140 replies to this topic

[HoldingTheFaith]

Ah Dichotohmy, I didn´t imply you have depression, was just stating I do, and quite sure the decreased REM latency and phasic density characteristic of depression is present in my case.

 

We gotta become experts in our own little world to beat these "idiopathic" curses.

 

Keep in mind the supp has 5HTP too. Sure it boosts dreams for me!

 

Glad to see you are improving on that med, good work. All the research and efforts pay off sometimes!

 

Regarding the thick discussion of wether the subconscious is responsible of psychological and even physical disorders, I am not the one to engage in it, for is quite futile taking into account your position holds a strong inner logic (that everything stems from purely physical events) that has yet not been dethroned, or demonstrated in a Kantian fashion to be myopic. However, I will say I can understand how the subconscious creates symbolic dreams from previously stored material to process emotional debris, and how when this mechanism is dysfunctional they reinforce/cause depression.

Edited by HoldingTheFaith, 01 October 2015 - 07:20 PM.

[dolan_duck]

I decided to start using very low-dose methylprednisolone to encouraging effect. I am seeing definite improvement in sleep quality, control of inflammatory pain to the point that I've dumped my 1400-2000 daily ibuprofen, a slight improvement in chronic nasal congestion (sinus inflammation after all?), and even a slight improvement in energy. The sleep thing is still pretty bad on paper - meaning still very fragmented, but better subjective quality. MePredisolone has a long half life, so the morning dose is still physiologically active when one goes to sleep. One thing I am noticing is a drastic increase in REM sleep and dreaming, which for me, is something I've been deficient in. The point I take from this is that the conventional wisdom about REM sleep being idiopathic and maybe unecessary is BS. I'm not sure if slightly improved breathing is helping me out, because due to the heart-rate rise in REM naturally I need to be able to breathe in more air, or what.

 

Perhaps I got really unlucky and my past alcohol use unhinged by HPAA and larger endocrine system. By unlucky I mean I didn't stick to heavy drinking for more than 3 years, versus those who go for decades without problems like this, and have one hell of a protracted, maybe permanent neurological change following acute withdrawal if that's what's going on. One thing that always struck me is how much better I feel for a few days immediately following an acute withdrawal following a period of prolonged heavy drinking. By that I don't mean during a hangover, but around 24 hours after alcohol cessation. Conversely, now when I try, after 30 minutes or so the pleasure effects of alcohol melt away and lead to a stuporous malaise with physical symptoms of alcohol intolerance after just 2-3 drinks.

 

http://www.ncbi.nlm....les/PMC2266962/

 

http://onlinelibrary...2036.x/abstract

 

Really amazing how much we have in common. I also have just about all the symptoms you have and have gone through similar struggles. I also feel that alcohol is often the only way I get a really "deep sleep" and it's often on the days I rebound after drinking and not the actual night of drinking that I feel the best. Ibuprofen also helps alleviate my brain fog. The problem is that after I take it, my kidneys are in very severe pain. 

 

I really have no idea if we came to the same point due to different reasons. There really are a whole lot of people with similar symptoms from a variety of reasons, including people who are taking SSRIs, benzos, people who were on propecia, and even alcoholics suffering from PAWS (which is similar to benzo withdrawal). Other people just seem to wake up one day and brain fog/unrefreshing sleep hits them, which must be especially bewildering. To be honest, I've been on SSRIs, tried propecia, and had a pretty bad alcohol problem. Basically, at some point while I was on Celexa, these symptoms started and I lost the ability to have refreshing sleep. Celexa also led me to drastically increase my alcohol intake and turned me into a bit of an alcoholic, which other people have experienced on the drug as well.

 

I just want to share what helped me quite a bit with you and the other people suffering from these issues in this thread. Eating mackerel and herring. I usually eat it smoked or baked as I somehow don't get the same effect when it's prepared in other ways, such as pickling. I also eat canned tuna that is packed in its own juices/salt water. I don't know why this fish helps, but it is packed with B vitamins, vitamin D, Omega-3s, phosphatidylserine, and plenty of other nutrients. I actually live in Germany at the moment and I know the average grocery store tuna in the US is a bit questionable, but it's worth a try for you. Who knows if it works, but I'm not peddling anything to you. Try eating a lot of seafood for a few weeks and let me know if you have any positive impact.

 

The real problem for me is alcohol though. Whenever I'm successful with this seafood diet, any alcohol consumption seems to set me back to square one and I have a really hard time saying no to alcohol in social situations.

[Dichotohmy]

Surprised to see this back up.

I'm glad fatty fish seems to help you. You are correct that finding good seafood is challenging in the US outside the coastal areas. I have experimented with eating pouch tuna, rockfish or fresh salmon 3-4 days a week, but never noticed anything remarkable. Nor have I noticed anything good from the individual nutrients one would associate with fatty fish.

I dont buy persistent PAWS as a real explanation and doubt my past drug use is any way separable between correlation and causation.

I'm now resigned and not looking for or expecting answers to my problems, which persist and have stagnated. Correlation and causation are the operative words and I'm all too aware that medical science and 99% of people have a tendency to confuse correlation and causation, which has rendered me cynical to both evidence based and empirical treatments.

[dolan_duck]

Surprised to see this back up.

I'm glad fatty fish seems to help you. You are correct that finding good seafood is challenging in the US outside the coastal areas. I have experimented with eating pouch tuna, rockfish or fresh salmon 3-4 days a week, but never noticed anything remarkable. Nor have I noticed anything good from the individual nutrients one would associate with fatty fish.

I dont buy persistent PAWS as a real explanation and doubt my past drug use is any way separable between correlation and causation.

I'm now resigned and not looking for or expecting answers to my problems, which persist and have stagnated. Correlation and causation are the operative words and I'm all too aware that medical science and 99% of people have a tendency to confuse correlation and causation, which has rendered me cynical to both evidence based and empirical treatments.

 

Pouch tuna from the major brands is garbage. They actual flash cook the industrial tuna twice which basically kills all the nutrients. You can read about their cooking methods for the big brand name tunas on the web. It's true that in places like Oregon and Washington not only can you get better seafood, but the overall quality of food is world's better. I have the feeling that a huge amount of people who have these kind of CFS/metabolic problems mostly stem from the south and Midwest, and that's partly tied to diet and so on. Although, that is mainly a generalization, because the diets across the US are pretty terrible.

 

Also, are you eating farmed salmon or wild salmon? Farm salmon not only has a screwed up nutrient profile, but it also tastes pretty terrible.

 

Like I said. Herring and mackerel. These are deep water oily fish that offer a lot of nutrients that other fish don't.

 

But I understand the frustration you're going through. It's very possible eating the healthiest and best quality seafood on the planet would do squat for you.

[czGLoRy]

I can relate surprisingly well to your symptoms. All of  them resonate with me. I was diagnosed with sleep apnea however, but the most noticeable part of my diagnosis was that I had not gotten any rem sleep over an 8 hour period. 

[Dichotohmy]

I can relate surprisingly well to your symptoms. All of them resonate with me. I was diagnosed with sleep apnea however, but the most noticeable part of my diagnosis was that I had not gotten any rem sleep over an 8 hour period.

Interesting.

Would you say that you consistently get little or no REM sleep each night? How long do you think your REM dediciency has been going on and how long have you been having similar symptoms? Are you on some medication that is known to blunt or eliminate REM sleep?

I intuitively know that my lack of REM makes this all worse. Unfortunately, there's very little in the way of evidence to corroborate the importance of REM , or the negative effects of not getting REM. Keep in mind lay people often confuse deep NREM sleep with REM and it gets more murky to research or explain.

My deal is that for whatever reason, I wake up during or immediately after every single REM cycle. I can almost tell what time its going to be because its on the 1.5 hour dot each time, until REM density increases in the last 2 hours or so and its every 30-45 minutes. This both leads to extremely fragmented sleep and decreased REM duration. I can't entirely blame this on breathing, but breathing effort definitely makes my sleep worse ala UARS.

The other thing is my long REM latency - usually 3.0-4.5 hours. Could that be an adapation - in that my brain wants to keep this time of deeper NREM sleep non-fragmented. How important is non-fragmented and continuous occillation through the sleep cycles any way.

[deetown]

All your symptoms fit biotoxin illness.  

 

http://www.survivingmold.com/diagnosis

[brainfogboy]

Not to hijack the thread, but OP and I have very similar issues.

 

I made a recent post on reddit and numerous people recommended the same website.  One of the doctors (Dr. Keith Berndtson) is very close to my area.  The biggest problem is these guys usually don't take insurance and with office visits, testings, etc. it's going to range in the thousands of dollars.

 

I can't tell who to trust anymore, what is real or not real, and what constitutes as adequate testing and what does not.  I have had over $1 million in testing via insurance, with no luck whatsoever.  Interestingly enough, I had a migraine over the past 24 hours which prevented me from eating (throwing up for hours) and nearly all my symptoms go away.  I watched a movie and was able to follow it for the first time in years.  I couldn't figure out why, and then realized I had not eaten for quite some time.  Eating caused immediate brain fog.  I feel like (still going through it) I'm being poisoned by something.  I'm pretty convinced it's food related, but unsure of where to turn.

 

If it is biotoxin illness (mold,whatever) is there any validity to urine testing?  I tested positive for mycotoxins and nothing was ever done about it, because the doctor who ordered the test wanted to charge me $15,000 out of pocket for IV treatment.  I ran from him as fast as possible, and doubted the validity of the test.

 

Is it reasonable to assume biotoxin illness is a real thing, urine testing can test for the presence of toxic substances, and with treatment this can go away?  After countless failed attempts this just seems like another failure waiting to happen, and I cannot afford another mistake.

Edited by brainfogboy, 02 June 2016 - 02:42 AM.

[deetown]

Urine testing is not a good test for biotoxin exposure.  There are many quacks in the mold illness space, so I can understand your apprehension.  When I had it my immune system went crazy and I developed allergies to just about everything I put in or on my body regularly.  You have a few options.  If you have funds you can pay $300 to run an ERMI mold test where you live.  All other tests are useless.  You can find a doctor who knows the shoemaker protocol and pay them for consultation, probably $500 for the first season and a third that for follow ups.  You may have trouble with insurance here.  They will prescribe all the tests and medicine which your insurance will cover.  If you can't afford a doctor you can talk your general practitioner into proscribing the tests and medicine.  You will  have to do the analysis yourself.  Fortunately this site lays it out pretty well:

http://biotoxinjourney.com/ 

[brainfogboy]

The illness remains with me no matter where I live. Currently I'm somewhere in Indiana living out of my car, hundreds of miles away from initial exposure. I don't think ERMI would apply, unless there's some other test that can be run in relation to that. Thanks for the link though. Can definitely resonate with much of what he said, minus the god part.

[Ed Sorow]

I had a great deal of these symptoms--nerve pain, muscle pain, joint pain (with cracking and popping), inflammatory tendinitis, stiffness in the joints, stiff posture, brain fog, wired yet tired feeling, low quality fragmented sleep, ibs from certain foods, low body temperature, lack of concentration, and anhedonia. I even had the blurred vision. The post-exertional malaise was there as well, but it did not make me fatigued, but it made the nerve pain, muscle pain, and joint pain worse. I also had orthostatic intolerance, but it was never bad enough to make me faint. I wasn't able to stand hot or cold temperatures. I can't remember if my heartbeat was affected.

 

The doctors were never able to figure it out. Just said it was probably CFS.  I did various experiments over the years, and came up with various theories. I still haven't figured out what the problem is exactly, but I have been able to manage my symptoms.

 

In the end antidepressants are what helped. The SSRIis helped a bit with the physical pains, and stomach pains, but had various side effects. Eventually I asked for Bupropion, and that's what did the trick. The fatigue, and brain fog has almost vanished, but the anhedonia is still a serious issue. The physical pains are drastically reduced as well, and they are manageable with exercise. Also, there is no post-exertional malaise at all. Before I started taking the bupropion, weed affected me the same way it affected you, but after I started taking the bupropion, it stopped causing the mental issues, and started helping with the physical pains as well.

 

I also figured out that I can't tolerate fodmaps. As long as I avoid those, my stomach issues are minimal. Also my stomach issues seem to trigger my physical issues, but I don't need to have stomach problems to have the physical problems. When my physical issues get particularly bad, I just smoke a bunch when I'm free, and lay in bed all day, and that usually helps.

 

I still had fragmented sleep until recently, but vistaril helps with that, although it can leave you drowsy the next day. Even if it leaves me drowsy though, it's drowsiness without the mental fatigue/brain fog from lack of proper sleep. Also, it makes it much easier to nap during the day.

 

I never did get heavy metal testing, or any other kind of toxin testing done. Nor did I get test for a chronic infection. I just figured since the bupropion worked so well, that neither of those were the issue. Correct me if I'm wrong about this. 

Hope this helps.

Edited by Ed Sorow, 16 July 2016 - 03:53 PM.

[Dichotohmy]

Hi, Ed, thanks for posting.

I was on buproprion in the very beginning of these issues developing around 33 months ago now. Now, I was taking the bup as a stimulant adjunct, and it did synergize well with psychostimulants. As a monotherapy, buproprion was pretty useless for me and infact, I could only tolerate a maximum of 75-100mg once daily. The two times I tried to take 150 mg of buproprion, I had such an adrenalin dump, IE sweating, jittering, 170/120 blood pressure, tunnel vision, and heart palpitations, that I swore off ever taking anything but small doses.

I have also tried fluoxetine and venlafaxine through an understanding psychiatrist as adhd adjuncts. These plus other serotonergic antidepressants like 5-htp and SJW just don't get along with my brain. While they help sleep quality a little, that's about it and instead of cognitive uplifting effects induce apathy, worse adhd, blank mind, and this nagging sensation of unreality that sits under the surface. The one benefit doesn't outweight these negatives and the other well-known serotonergic side effects I don't need to mention.

Weed is interesting as it is now pro-hedonic and really allows me to be introspective and feel an emotional connection to my thoughts and experience instead of the typical robotic neutrality. It still worsens ADHD a lot and induces strange effects in the long run from chronic use so that I don't use it very much.

Obviously in terms of testing you need to ask yourself if an abnormal result will really help you gain more perspective or tailor treatment. Keep in mind that antidepressants likely have effects on the immune system and other MOAs we don't understand yet. That isn't an appeal to ignorance so much as it is a wisdom not to draw too many conclusions when it comes to issues of the brain, which are inherently mysterious and difficult to elucidate.

[niner]

I was on buproprion in the very beginning of these issues developing around 33 months ago now. Now, I was taking the bup as a stimulant adjunct, and it did synergize well with psychostimulants. As a monotherapy, buproprion was pretty useless for me and infact, I could only tolerate a maximum of 75-100mg once daily. The two times I tried to take 150 mg of buproprion, I had such an adrenalin dump, IE sweating, jittering, 170/120 blood pressure, tunnel vision, and heart palpitations, that I swore off ever taking anything but small doses.

 

 

If bupropion is helpful (presumably as an adjunct to other therapy), you could try the sustained release version.  Once per day dosing and more consistent levels.

[Dichotohmy]

If bupropion is helpful (presumably as an adjunct to other therapy), you could try the sustained release version. Once per day dosing and more consistent levels.

Indeed, but I don't use psychostimulants anymore.

I had to come to the hard conclusion that stimulants just don't work for me unless I take them after refreshing sleep and while otherwise feeling physically ok. Taking them after unrefreshing sleep in an attempt to promote wakefulness cognitive powers, or to ineffectually attempt to power through feeling physically crappy, backfires on me without fail. Being tired and wired is much worse than just being tired. Having more mental energy and attention capacity is actually counterproductive when in this kind of zombie mode, as it fans the flames of frustration.

[Dichotohmy]

Because I stlll get PMs from random strangers over this thread, I'll post some updates.

On the plus side, I have definitely gotten significantly better since even just last summer. I would describe this improvement as around a consistent 50% of healthy, to even 60% on good days; wheras when I first made this thread, and up to around the middle of this year, I was more like consistently 15% to 30% on a good day. Now, I'm by no means improved to normal, and certainly have a long way to go, but that relative improvement is significant.

The first thing I believed to help is high dose zinc. By that I mean 100-200 mg elemental consumed in drinking water throughout the day, so basically divided doses. I had and have zero apparent side effects from this, not even nausea. This dosage is medically inadvisable, but given my situation, risks are worth taking.

The second thing is eating a caloric excess, like around 3000-3500 a day when by my calculations I should only need 2000. I have to force it down sometimes, and I pay absolutely no attention to nutrition, macronutrients, or any of that stuff that might make a difference for others. I have managed to gain 7 pounds in eating like this for around 5 months, which given my activity level, tells me my gut is a black hole where calories disappear. Keep in mind I was down to 119 pounds/69" tall just 5 months ago I would have never thought this could make such a difference as I always thought I was eating enough and never really felt hungry.

Symptom wise, the improvement can be attributed to the dysautonomic things largely going away. There is also a marked decrease in PEM like episodes and I am generally better at recovering from a given day of doing things.

My sleep quality is still quite bad, which I believe is related to non-allergic rhinitis and/or sinusitis causing the sleep disorder UARS. I have tried just about everything short of surgery for my upper respiratory issues while sleeping to little avail. Stimulants still mostly don't work so I have no answers for severe ADHD, I am still overly fearless and risk taking and irresponsible, still brain fogged, my joints and muscles still get destroyed and painful from seemingly unremarkable physical exertion (which has always been the problem vis a vis the muscles and joints hurting for no apparent reason), and I still can't hold a job or make much progress on my college degree because the PEM still kicks my ass if I'm not cautious.

Given everything, it beats being half dead.

Edited by Dichotohmy, 10 November 2016 - 01:32 AM.

[AlexCanada]

Because I stlll get PMs from random strangers over this thread, I'll post some updates.

On the plus side, I have definitely gotten significantly better since even just last summer. I would describe this improvement as around a consistent 50% of healthy, to even 60% on good days; wheras when I first made this thread, and up to around the middle of this year, I was more like consistently 15% to 30% on a good day. Now, I'm by no means improved to normal, and certainly have a long way to go, but that relative improvement is significant.

The first thing I believed to help is high dose zinc. By that I mean 100-200 mg elemental consumed in drinking water throughout the day, so basically divided doses. I had and have zero apparent side effects from this, not even nausea. This dosage is medically inadvisable, but given my situation, risks are worth taking.

The second thing is eating a caloric excess, like around 3000-3500 a day when by my calculations I should only need 2000. I have to force it down sometimes, and I pay absolutely no attention to nutrition, macronutrients, or any of that stuff that might make a difference for others. I have managed to gain 7 pounds in eating like this for around 5 months, which given my activity level, tells me my gut is a black hole where calories disappear. Keep in mind I was down to 119 pounds/69" tall just 5 months ago I would have never thought this could make such a difference as I always thought I was eating enough and never really felt hungry.

Symptom wise, the improvement can be attributed to the dysautonomic things largely going away. There is also a marked decrease in PEM like episodes and I am generally better at recovering from a given day of doing things.

My sleep quality is still quite bad, which I believe is related to non-allergic rhinitis and/or sinusitis causing the sleep disorder UARS. I have tried just about everything short of surgery for my upper respiratory issues while sleeping to little avail. Stimulants still mostly don't work so I have no answers for severe ADHD, I am still overly fearless and risk taking and irresponsible, still brain fogged, my joints and muscles still get destroyed and painful from seemingly unremarkable physical exertion (which has always been the problem vis a vis the muscles and joints hurting for no apparent reason), and I still can't hold a job or make much progress on my college degree because the PEM still kicks my ass if I'm not cautious.

Given everything, it beats being half dead.

 

 

I used to have some reasonable improvement from zinc a year ago but unfortunately almost any time I try taking it these days... including low doses such as 4mg Zinc Citrate I get such strong chills and my entire body gets extremelyy cold for the next 20+ hours. The coldness and chills start about 1-2 hours after dosing.  Yet if I remain under the covers sometimes my body feels warmer than usual at moments. Outside of bed though good lord. Freezing unbelievably from the zinc. 

 

I don't know why this is.

 

 

I've been copper deficient btw as shown on blood tests. I take low doses of copper once in a while and there is a distinct improvement to my cognition and greater clarity of thought about 3+ hours after taking it. It also seems to help bowel movements with large clearance. 

 

I am low T, very low estrogen, very low cortisol***, moderately hypothyroid, very low copper, very acidic PH.   Lot of symptoms of fungal infections.          Don't know what to do.    I am often joyless, disinterested, withdrawn, severely brain fogged, diffficulty communicating, poor motivation, etc. 

[teacult]

Its been a while. I was attending my studies. During the time I figured out many more things to share. 

 

My old strategy for you was to cut stress and enjoy life a little more increasing calories, demanding a demote in job environment (an easier job) , reduce sports activity intensities and better friends and environment and sleeping more.

Including not smoking and not taking alcohol, cutting all chemicals and switching from wheat to legumes, red meat to fish. Namely yogic principles ...

 

In addition, I would like to inform you that many known and unknown STD's parasites, viruses and bacteria causes significant endocrinological and neurotransmitter-balance changes. And they also cause intense inflammation, cysts , and cancer in long term.

They make IBS and gastritis like symptoms, especially in stomach and gut, consciousness weaknesses, energy lack etc. These are very similar symptoms what you were describing.

One of them standing out is toxoplasma gondi (cat feces germ), impossible to cure, but it can be managed.

 

There are many types of HPV - nearly 10000 is known 240 are mastered - . There are vaccination options.

Getting screened for such viruses bacteria and parasites seems to be a good idea.

Many of these germs are carried from mother to child. CDC (Center of Disease Control) has a lot information about these.

Celibacy and a healthy mother and alternative conception options seems good enough tho. I personally think DNA methylation-wise imbalances degenerate generations to compensate these infections. That is what causing so many stupid people around.

Increasing immune function deals with a lot of problems. Telomeras activity promoting foods and health practices are very effective with dealing symptoms. There are two drugs with different mechanisms are recently invented for this.

However if you lengthen telomeres too much. They cause cancer, since not only immune cells divide many times more , all cells does. That cause another type of DNA damage.

You probably know what I am talking about.

 

If things are very messed up. As a management strategy ;  

You can slow down, and loose use your 3th eye (logic and knowledge) and program a good education and health strategies for next generations of your own (your children) . Sacrificing some success and IQ gains which improves as much as you push hard. 

So whats left is to enjoy life. Since you give up with pushing hard...

That's basically what eastern cultures and yoga advice. 

 

There are very advanced options in synthetic biology, and new types of retro-viral therapy if it is your case. You can find them from pubmed. And contact them and get volunteer for promising drug trials in late stages.

But the most important thing would be DIAGNOSE of the underlying condition. If you volunteer they might check for viruses and bacteria for free and if you dont have them, they wont proceed with drug trial.

 

As final words, there are many possibilities about what is wrong and a lot of options depending the cause. 

But there is always hope. So try to get as specific as possible with your condition with good diagnoses, or take a general approach to well being without exerting yourself too much.

 

Good luck.

 

 

 

 

[UnrefreshedTurtle]

Hi all, just joined today to reply here. First let me say, I share a lot of symptoms with many of you, particularly Dichotohmy, HoldingTheFaith, and brainfogboy. This post mostly goes out to Dichotohmy, but I think it applies to many.

 

I've been experiencing these problems around 5 years or so now, but some days I think about it a lot. Still haven't found a cause or solution. Today I've been on a 7 hour bender of researching forums online, and this was the last thread I found. I read through the whole thing. Not meaning to thread hijack, hoping to help myself and others.

 

Regarding "function", I feel like this doesn't affect my daily life that much.. but then again I did quit my job almost a year ago and have lived only on my own savings since then. I'm not sure how I'd adjust if I had to get up at a certain time during the day again. Part of my coping strategy has been to eliminate any source of time-sensitive exertion.. ie a 9-5 job where I have to be "on" at the right time.

 

I must say I also relate to teacult in some way, I see that there has been a lot of conflict here but ultimately I think you all just want peace.

 

Lastly before I start, this got huge. I hope it helps someone, and I certainly hope it doesn't come off as an attack (I keep saying that because I really attack some of the assumptions of the posters below, but it's from a place of trying to understand and clarify, hopefully on both sides)

 

Here's my symptoms. Casual readers can skip this list as it's very similar to other reports. For most of them, I have found NO correlation to caffeine, diet, things like that. Some may be unrelated (such as sinus issues) but wanted to include for completeness.

- IBS issues of all kinds, nausea, pain, limited appetite at times

- Swollen nasal turbinates, basically sinus problems.. get sinus infections often, snore a lot, wake up with dry mouth

- Extreme fatigue which can be off and on in a moment, I can get tired or have tons of energy at ANY time of day, right when I wake up to lying in bed trying to sleep

- Sometimes insomnia (see above, I get energy randomly)

- Get colds and flus often (lowered immune response)

- Tight feeling in belly, like I have a knot, sometimes feels short of breath like anxiety

- My big toes are always numb, and I sometimes get this feeling in other areas of my feet

- Sometimes my skin tingles, not an itch or a burning feeling, but it feels uncomfortable, like my clothes are tearing at my skin or something

- I have an eye twitch that I don't notice.. basically sometimes I wink or something, but I never know I did it, only my girlfriend told me a couple years ago this was happening

- Waking up feeling extremely tired after sleeping a full night

- Very poor hand eye coordination (lifelong problem)

- Repetitive muscle action makes me very tired - at one point I could squat 280 pounds 5 times, but at the same time, squatting 20 times with no weight would give me trembling feeling. My arm sometimes gets sore brushing my hair (I'm a man with long hair). Yoga makes me tremble and often fall to the ground if I try to work past the point of discomfort, this is with "beginners" yoga on youtube from several sources. This is odd because I am seemingly "strong" in some ways, I'm a 26 year old male and overall quite fit, I can run 5-10 miles

- Despite this, I very very rarely get DOMS (delayed onset muscle soreness) from exercise

- Extremely sweaty person, I get overheated easily during exercise, actually right now I'm sweating and kind of smelly for seemingly no reason, but this isn't that common except with exercise

 

So that's it for the physical. There's also some things I would consider more "mental" symptoms, or seemingly psychological related

- Brain fog, trouble focusing

- Extreme avoidance of cognitively taxing tasks. I was a software programmer and quit my job and haven't really touched much hard thinking since.

- Racing thoughts

- Impatience, impulsivity, especially while driving

- Prone to anger particularly while driving, actually almost exclusively while driving and the anger is VERY strong

- On the other hand, I'm generally very risk averse, so this is very odd behavior when it happens

- Anhedonia

- Constant task switching while trying to get something done.. I often will want to make coffee, but keep cleaning up random little things, basically flying from thing to thing and in the end taking forever to just get a sandwich to eat

- On the other hand, extreme focus on some things. Hence this 7 hour (so far) bender without eating, I'm hoping after I post here I'll relax.

- Feeling very overwhelmed when there's a large number of details.. ie if there's a 20 step process, even if each step is simple and the whole thing only takes 5 minutes, my brain has a very hard time proceeding until it understands each step or something? Basically it gets overwhelmed and I get "frozen", unable to act

- Extreme procrastination, probably due to this ^^

- Mood swings

- No social drive, I simply don't care to see or talk to other people 99% of the time.. I do have good social skills and am generally considered very charismatic and endearing by people I meet through friends and in business, but I just don't find entertainment.

- Feeling extremely "in the moment" often, many times I will think it's the "coolest" song or the "best" flavor of ice cream but it always changes, fad prone

- Extremely poor memory, especially recall memory. I can memorize stats, tables, and facts, but rarely anything to do with personal people (ie stories of my girlfriends coworkers), really bad at remembering dates, both past and future. I have to write EVERYTHING in my planner ALWAYS or I Simply WILL NOT DO IT. Even in my planner it's a gamble if I'll really do it in the end. Mostly due to not checking my planner, even though I know it's important? I simply don't remember to open it during most days.. also, if someone asks me to "think of a time when" or "what is your favorite" I generally cannot answer this, or it takes me a long time, or I have to just say whatever comes to mind instead of really answering their question because it's very hard for me to remember things in this way.. yet if someone asks me "What are the weaknesses of a steel type pokemon" I will know, despite the fact I haven't played in well over 12 years...

- I noticed in the past year, I have lots of perfectionist tendencies that created all kinds of problems, but they're mostly reduced now

- Very much a people pleaser, perhaps due to abuse in the past

- Extremely easily startled

- Some types of gore in movies etc will make me very ill, to the point of tunnel vision, nausea, almost throwing up or passing out

- Coffee gives me an extreme euphoric and alert feeling, sometimes, but not always. Most people I talk to do NOT relate to this feeling on coffee. It is akin to the "superman" feeling people report when on stronger stimulants, though I've never tried them (not sure if I can elaborate more on this)

- I don't grieve much, when my grandmother and father died, I did care but never really cried. I have cried more from dogs dying, or even from dishes breaking before as a kid (attachment issues?)

- I don't seem to care if other people were to die, not sure if this is really relevant, but it's because I don't think dying is a bad thing per se.. anyways that's more philosophical, but some people have reacted very oddly to this

- Difficulty with over-commiting, I tend to overcommit to everything until the time comes, in which case I don't want to do it, probably related to people pleaser mentality

- Tend to get EXTREMELY tired when entering a stressful conversation

 

So if you got through all that, thanks. You can see why it's so confusing (and I'm sure can relate yourself if you're here).

 

At this point, I think it could be mental, or physical or both.. I read so many great insights here which is why I had to post.

 

@Dichotohmy: I hear that you've been through it all and tried so many PTSD etc related treatments. After I wrote this section to you, I realized it comes off as kind of combative.. please know that I'm coming from a place of love, I'm an INTJ and clinical by nature but I'm not trying to attack anyone here in any way.

 

After researching so much on my own health, I'm convinced that for a large number of people with these problems, there are psychological issues at play. I don't think this covers everyone, but I also don't think it's possible for anyone to 100% objectively evaluate whether there are psychological issues at play in their own situation. Because of this, I am seeking it as a possible solution, and I would encourage you to as well. Here's my rationale.

 

I rewrote this next section many times actually. And at the very end of it, I re-read your first post, and found we have some of the same conclusions.. But long story short, I believe that there's no way for us to completely understand the brain, at least as of now.. and as a result, there may be many biological mechanisms we are completely unaware of, or don't full understand. If you look at the brain from an evolutionary and survivalist perspective, lots of things start to make sense (though that doesn't necessarily give us solutions YET).

 

Mental illnesses are real illnesses, with real causes, and real effects. Maybe we don't know what chemicals are out of whack, or if that's the problem at all, but the facts remain. People get depressed, and they have REAL physical symptoms as a result. Perhaps in your case this is not true, but the statistics simply do not lie. Depression CAUSES physical symptoms.

 

But our physical state also CAUSES mental states within us. As Juangalt mentioned earlier, smiling can make you happier, this and many other effects have been well proven, this isn't pseudoscientific bs. I saw you mentioned that perhaps depressive cases could be caused by inflammation, this is the same concept, perhaps I'm speaking out of turn and there's no reason to explain this to you since you get it.

 

I read that whole blog post you linked earlier, as well as the comments. If you never read the comments on that page, I recommend you do so, because they were more interesting to me than the whole post (from the Rob guy and the replies).

 

I don't think we fully understand the relationships between anhedonia, sleep, proper nutrition, dopamine responses, stimulant use, etc. I think it's a complex chain. I know for a fact that the simple act of smiling can make you happier, both in my own experience and in scientific studies, just as one example. If thoughts are within the biological machine, why can't they affect the machine itself? I believe this is an oversimplification, and trying to fit the workings of the brain into a finite understanding, which causes conflicts.

 

What I'm getting at, is you may have PTSD or a similar "psychological" condition. Whether it's caused by "bad thoughts" or by a complex biological chain doesn't really matter. Like you said, who cares about the why at this point.. but if you completely ignore any and all biases, reasonings, and motivations, you will see that all that matters is the result of the treatment.

 

Forgive me if I'm wrong, I know these subjects can be very sensitive. But I noticed something. You said "I don't think I have significant trauma from any stage in life", yet you also said "I have little doubt I could be diagnosed with C-PTSD from my upbringing (pre-military)". I may be wrong, I often am, but this seems like a paradox.

 

I don't know why I care so much about this. I think it's because I see myself within you. I have gone through a lot of abuse that I dismissed as stuff I could handle. It doesn't affect me emotionally anymore either for the most part. When I think of what has happened to me, I do not get sad, or angry. But sometimes randomly during the day, if I remember something new that happened to me, or gain some insight into my childhood or previous marriage.. it will make me cry for about 15 seconds, very strong sadness that goes away quickly. I think your drunk episodes may hold a clue.

 

All current living organisms have evolved a long ways to get here. Humans have stress because it shapes their behavior to make them more likely to survive. That said, an excessive amount of stress (or an excessive amount of anything) numbs the brain. This is for simple survival reasons. You cannot pay attention to everything at once (simply try), so your brain has to prioritize. Habituated stimuli get ignored.

 

Is it possible that these experiences were once traumatic to you, but no longer feel that way? Perhaps your brain just can't deal with those situations anymore.

 

Anyways, aside from that, I think there are lots of things we can try to do which can affect our biology on a very deep level. One possible method is, like teacult said, to enjoy everything around you.. I know easier said than done with anhedonia. But what if we could retrain our brains, to realize that it can expect joy and pleasure on a daily basis. I don't know how I could do this.. but I do know that on the days when I have something I really want to do (like right now) I have unlimited energy.. It's just that finding something I really want to do is very difficult, and what worked yesterday often won't work today. But I think this is an important insight into discovering all kinds of new treatments.

 

At the same time, on the days after the days where I've had lots of energy, I feel somehow "hopeful", like I understand what it's like.. and in general, I have more energy the next day as well. This corresponds to a lot of science on habit building.. not sure if you've looked into that, but habits are fairly magical things. Perhaps a modified CBT of some kind would be very powerful.

 

I guess long story short, I don't want you to dismiss a possible diagnosis or treatment because you don't think it is physically possible for it to help. I think that talk therapy, CBT, exercise, etc may all have extremely profound and obvious effects on the brain. I mean, we have to sleep to consolidate memories. I don't see why talking a problem out can't affect our physical biology as well. Really, the comments on that blog post were so insightful for this, I'm going to read them again. Still not sure where I stand on it but I think it's an important part of understanding the whole body and what we're talking about.

 

I do think you may be right about the sleep.. and I think you should try getting another sleep study done if at all possible, you can also try to buy a cpap machine locally from craigslist if you're in the US and look at forums to evaluate the results yourself. I haven't done this yet but have a friend who has. But sinus issues combined with waking up many times and no restfulness is a recipe for sleep apnea.. sleep apnea is a recipe for sleep deprivation.. and bad sleep can cause a LAUNDRY LIST OF ISSUES.

 

If you have not confirmed sleep health, in my opinion there is simply no way to judge the rest of your experience. It's annoying because logically in my mind I can think everything through, but the reality is, without enough sleep, the body WILL react in physical ways. Often in very odd ways. It's kind of a game of cat and mouse, but dealing with my own condition, I have always had the sense of.. there's some kind of cause for all of these problems.. and if I could eliminate that one cause, I could eliminate everything else. Right now, I think sleep is a very big thing you should pursue, because there is actually a possibility (a REAL possibility) that fixing your sleep would fix every single one of your other problems. And there's lots of possible problems with sleep. If you sleep 16 hours but get woken up every 20 minutes it won't do you much good. Perhaps you wake up every night but only remember some nights? This is a symptom of sleep apnea.

 

I've sometimes wondered if sleep is at the core of my issues too. But I think that anxiety, ptsd etc could actually CAUSE sleep problems. I mean think about it.. severe stress is the same on a biological level, whether you're being attacked by a murderer or you're worried what Jane thinks about your jacket. It just seems to make perfect sense to me that, evolutionarily speaking, anxiety could cause wakeups, which could cause sleep depriation, etc etc etc.

 

And again, as stated above, I don't think your brain has to be directly and currently conscious of the stress and anxiety to be experiencing it.

 

I can see that you're really hurting man.. I am too, it freaking sucks. I hope this somehow helped you think of things in a new way. It's now been 8 hours since I last ate so I absolutely must stop now that I'm done with this post, but I'll check for replies later.

 

Just a few more details:

- I have tried buproprion, that seemed to keep me up for 36 hours at a time playing world of warcraft, but that was 10 years ago. Basically improved energy but made the hyperfocus impossible to avoid

- Never noticed a correlation with alcohol or ibuprofen but I may experiment a little

- I also smoke pot frequently, it does help with nausea and ibs symptoms but doesn't seem to help with most of the other symptoms. Pot smoking started after these symptoms arrived anyways, as an attempt to help with some of them :\ I do plan to experiment totally cutting it out again soon though.

 

I've tried lots of treatments, exercise etc.. I'm going to try exercise again soon. Due to the anhedonia, fatigue, etc, makes it very difficult to stay consistent on one plan. Plus the memory issue is actually the biggest one. I can simply not seem to remember most days that I need to exercise if that's what I decided, and so far any attempt at creating a system to effectively remind me hasn't worked. Same thing has happened with supplements. Perhaps I can pay someone else to help me with these reminders somehow..

[simonjb]

Hi all, and to Dichotomy in particular.

 

I suffer with the same set of symptoms and have also read this thread all the way through. This thread is the first compelling lead I have had in over a year, since the gradual onset of these symptoms a couple of years ago.

 

I have severe sleep fragmentation, which thanks to an NHS Polysomnographic sleep study, has revealed that I have many arousals to N1 (very light sleep) per hour, a loss in total slow-wave sleep (reduced by about 5-10%). The most compelling find however was that my total REM sleep percentage was consistently under 10%, whereas it should be 25%. My REM latency averaged 146 minutes, and was significantly longer on a couple of tested nights.

 

Correlated with my sleep disturbances, is an inexplicable increase in heart rate, which is not associated with any SpO2 (blood oxygen saturation) events, I have no sleep apnea (less than 1 per hour AHI) and no associated respiratory comorbidities.

 

I suffer from constant brain fog, fatigue that is worsened by exercise, depression, and cognitive deficits including memory. I also have an unsual essential tremor that is far worse in the morning, as are most of my other symptoms except sleepiness which persists. I am quite convinced that my fragmented sleep is the cause of my symptoms, but the root cause of that itself is still unknown. One compelling piece of evidence for this was one night many months ago where I slept really well on a combination of Zopiclone and Piracetam (acute not chronic), I have not been able to repeat that night. When I awoke from that sleep, I felt groggy, but I knew my sleep had been deeper than usual. That day my cognitive deficits were reduced and overall brain fog was massively reduced.

 

I have unsuccessfully tried to treat my sleep with a whole host of various drugs including benzos, non-benzos (z-drugs such as Zopiclone), sedating antidepressants (mirtazapine, trazodone), first-generation antihistamines, and melatonin. Many others including a variety of herbs, supplements, and nootropics. The ones that had a noticeable effect are listed below:

 

• Trazodone - Improvement in slow-wave (deep) sleep earlier in the night, some increase in dreaming. Too short acting, ideally would double dose if grogginess wasn't so prevalent.
• Pregabalin/Gabapentin - Both consistently improve deep sleep at low doses until tolerance sets in after 1-2 weeks. About 30-40% better functioning, dreaming is still rare though.
• Baclofen - Hit and miss, still experimenting
• Benzos or Z-Drugs - Very rare improvement in fragmentation
• Hydroxyzine - Tested this for the first time recently, two tests on record. Improved sleep on second test, but not first. Leaves grogginess.
• DMAE - seems to enhance ability to dream, AChE inhibitors and other cholinergics do not have much effect. Piracetam was used mainly for anticonvulsant properties when paired with Zopiclone.

 

At present I am trying to treat the depression aspect, as it may reinforce the sleep issues, as advised by my sleep consultant who is excellent.  He has been unable to explain my issues, as he has not seen symptoms like these before. I am currently on 450mg (150mg 3x/day) Moclobemide, a reversible MAO-A inhibitor. Upping to 600mg soon, been on for around 4 weeks, does seem to help with depression and lack of emotion, but waiting longer to be certain.

 

Also investigating low dose amisulpride (25-50mg) to increase dopamine (by competitive inhibition of presynaptic autoreceptors), as well as ultra-low-dose Lithium (5mg elemental lithium from 131mg Lithium Orotate). The lithium is for general neuroprotective purposes having read an interesting study about the correlation of naturally-occuring lithium in the water supply, and a reduction in suicide rates, it is worth a read.

 

I intend to persue Agomelatine next as an adjunct to the Moclobemide, which is known to improve sleep by activation of both MT1 and MT2 melatonin receptors, aswell as antidepressive antagonism of Serotonin (5-HT) 2C receptors.

 

For anyone with similar fragmentation wishing to find an occasional source of semi-relief. My recommendation is occasional use of Gabapentin, it seems to reduce fragmentation.

 

I saw someone here say that Zinc seemed to help, but that they couldn't tolerate it. I also noticed they said they had low copper levels, Zinc and Copper compete, so often should be supplemented together. Higher ratio of Zinc to Copper in terms of %RDI is recommended based on literature. I may go back to trying higher dose Zinc.

 

To those here, and those reading, do not become disheartened. Regardless of the cause of our symptoms, there is a definite biological mechanism. Whether that be inflammatory/autoimmune, deficiency, phsychological (unlikely), or pathogenic; something is causing these symptoms in people across the world, and therefore there must be a cause or causes. And if we can find that, perhaps we can begin to find a solution - and not just the "disease management" that we have all apparently resorted to, in order to get by.

Edited by simonjb, 14 June 2017 - 05:39 PM.

[Dichotohmy]

UnrefreshedTurtle and simonjb, thanks for taking the time and effort to post some interesting thoughts and experience here. Don't think I'm ignoring you, I just haven't found the right time and muse to post a commensurate update yet.

Its been more than three and a half years on this ride and a lot has changed - some things for the worse, but mostly for the better. In short, I've plateaued around 1/3 of my personal 100% and have learned to accept that and live my life to the best and most fulfilling of my ability. Unfortunately, I still haven't found anything that really helps me and so have almost entirely stopped looking or thinking about solutions to my problems. I hope to elaborate on these things in the near future.

Edited by Dichotohmy, 15 June 2017 - 06:15 PM.

[simonjb]

Hi Dichotohmy, thanks for your quick response, I look forward to your musings. I'm glad you've been able to find ways to deal and cope, that's comforting.

Did you say that you've already tried anti-inflammatory treatments such as cytokine blockers?

I have found a direct correlation with sleep quality and next day function, so I'm attacking the sleep aspect as a treatment. I may retire from trying to find a solution after 3 years, but for now I'm determined to find a solution. My sleep consultant is passing my case details around at medical conferences so I'm hoping that he will be able to find something useful.

I have found that the mood and cognitive deficits can be somewhat attenuated by dopaminergic medications. Whether that be Mucuna Pruriens for L-Dopa, L-Tyrosine, or the ultra low dose amisulpride which I am currently experimenting with. Pregabalin and Gabapentin appear to improve deep sleep, but provide no improvement in REM sleep.

If I ever find a solution or have any useful updates I shall post here. Going to rule out depression-like fragmentation with Agomelatine soon, and I may also persue dopamine agonists as there appears to be a dopamine connection. Note: stimulants do not work unless I've slept well. I am talking drugs that selectively enhance normal dopaminergic neurotransmission, not NDRI type stimulants which only make the brain fog worse.

I hope you are all well as you can be.

[brainfogboy]

TLDR; Read the last paragraph - vagal nerve stimulator

 

I just spent 4 months on a psych ward after attempting to kill myself.  Fortunately/unfortunately I'm still here, and I wanted to say a few words as someone who has been struggling with this for over 5 years now and has literally been driven insane.

 

Is everybody ready?: THERE IS NO PSYCHOLOGICAL COMPONENT.  That idea gets thrown around like the word 'slut' and has lost all meaning.  To any of you reading this that think there is, or that there is a slight chance it might be, JUST STOP.  Do not turn on yourself.  We have it bad enough being sick, and then to be blamed and told that there is some way out of this, like if we only:

 

"accept out mind/body/spiritual problems and move on", or

"just learn to pray more", or

"ask god for forgiveness", or

"meditate and take up yoga", or

"get more exercise and reduce stress", or

"insert other stupid fucking comment here",

 

is just utter bullshit.

 

I had a really rough childhood.  Stress you can't imagine.  Never in my life did I ever get sick or have anything resembling these problems, or come close to the level of 'zombie-ism' that I experience on a day to day basis.  Unless Jack and his magical beans somehow made these traumatic experiences of mine suddenly come out of nowhere in my early twenties, I doubt the psychological component holds true for my past.  As to the future, I want to do things.  I crave to do things.  I JUST CAN'T.  Neither can most of you.  The majority of my stress comes from not being able to do the things I enjoy, and stress is therefore a consequence of my condition.

 

Good old Ockham has a point:  Which is more likely, stressed out from being sick, or being sick due to some weird-ass, psychological problem only prayer, medication, exercise, funky diets, and hot yoga can solve?

 

I have come to the following conclusions:

1. When a problem is effectively addressed the solution is immediate.  Think: antibiotics for infections, Valium for anxiety, orgasm for sexual release, etc.  There is a binary correlation between cause and effect.  If we indeed live in a world of causality, then there is no long term, drawn out, "Take these pills, wait a few days, take more supplements, wait a few days, start meditating and having more sex, and in 6 months your problems will go away".... it just doesn't work.  If you can address the root of the problem, IT GOES AWAY IMMEDIATELY.  If this is correct, we can be moments away from a cure.  Therefore,

2. We are not addressing the right problems.  Zinc and other supplements shouldn't be needed for maintenance.  The underlying problem isn't being addressed.  It is attempting to manage symptoms in relation to an underlying problem.  This is not okay.

3. We are over-thinking the problem.  We don't need a million supplements to get better.  We don't need any.  Something is off within us and we need to make it right again.  If  supplement can act as a catalyst for this, then so be it, but maintenance doses on supplements aren't needed.

 

Here's what I think it is, based on some recent results:

 

Unrefreshing sleep.  BURNOUT.  This has been stated over and over again.  Whether it's lack of REM, or non-REM... it doesn't matter.  Sleep is fucked.  The question is why?

 

Things that have messed me up:

Amphetamines have put me in the "fog".

Exercise has put me in the fog.

Stress has put me in the fog.

Eating can put me in the fog.

 

Things I do can put me back in zombie-land, so even on a good night's sleep I can still fuck myself over.  Am I not recharging enough, even on good days?  I feel like I'm always running on empty, which is why I can type something like this while on auto-pilot.  It doesn't require memory, forward thinking, or really any brain power.  I just type.

 

I recently started this supplement:

Kavinace Ultra PM

https://www.pureform...PPTEaAjbv8P8HAQ

 

And have had some success.  It has L-tryptophan and Phenibut.  I woke up feeling amazing, but within about 2 hours I was back in the fog.  Usually I either wake up in the fog, or fall into the fog within 10 minutes of waking.  So this had a remarkable improvement, although after a few days I built a tolerance and the benefits subsided.  The point is I felt like myself for a brief period of time, which told me there is something to this.  Refreshing sleep is what takes us out of the fog, so why aren't we getting it?

 

Finally some good news.  I just met with a doctor in Milwaukee, WI.  He's an autonomic neurologist.  His name is Dr. Thomas Chelimsky.  He's what doctors should strive to be like, because he actually listens and cares for his patients.  He was going to fit me with a "VNS Microstimulator", also known as a Vagus Nerve Microstimulator.  He said I had damage to my vagus nerve.  Hardware damage, like "physical damage".  He said I can't get proper sleep because my body isn't calming down, despite my best efforts.  I will be fitted with this device mid-July, so hopefully I can make some progress and send some updates.  Look into Autonomic Dysfunction.   You can't control it, but it WILL dominate your existence.  Most doctors don't know what Autonomic Dysfunction is, and aren't trained on it in medical school, which is why people like us cannot get treatment.  I'm not saying any of you have it, but the possibility is there.

Edited by brainfogboy, 17 June 2017 - 02:32 AM.

[UnrefreshedTurtle]

brainfogboy, I agree that sleep might have a lot to do with it. I also agree that we live in a world of causality.

That being said, symptoms of PTSD include: sleep disturbance, insomnia, fatigue, and restlessness. Perhaps we all have different reasons for why we feel this way, as well.

 

In recent days I've had huge breakthroughs on an emotional level. I've also found a lot of information relating to PTSD, panic attacks, and the body. With PTSD, the body initiates a stress response when it's not needed - at random times, or at specific triggers, or just all day. Cortisol and adrenaline can make you feel extremely agitated, tense, stressed, and wound up.. then leave you feeling like shit, or like you're on an amphetamine comedown. Because your brain is going through the same kind of comedown.

 

Since I was unaware of my emotions, I was unaware of the fact that I was having panic attacks very frequently.. I had read a couple descriptions of panic attacks, and didn't think they fit me. But they can have a wide range of effects - many people experience panic differently. I also started noticing intense fear around certain triggers, and recognizing it.

For some, perhaps it's not psychological. I'm convinced I have severe sleep issues, and now I think a big part of that may be due to PTSD and not feeling safe. PTSD physically rewires the brain to react differently to stimuli: http://energypsychol...ral-plasticity/

 

If the brain can be physically rewired by this, then all sorts of symptoms can result. In my previous posts, I mentioned the mind body link, and I'm doubling down on that now for myself.

 

If past trauma has nothing to do with it, why do Dichotomy, myself, and yourself have trauma? Why does Ed Sorow say an SSRI fixed his issue, and why does HoldingTheFaith have depression as well?

 

I know that illness can cause you to become depressed. I've certainly become much more depressed since I started having fatigue and brain fog issues which caused me to quit my job. But the fact that the brain fog can come on and go away in an instant has stayed with me.. especially because, the moment I start having fun, I generally wake up.. just can't find anything fun to do most of the time.

 

I am interested to see what your new doctor has to say. I did a little googling on the topic and found reference to POTS. From what I've read, that's a really annoying condition for a lot of people, but also seems pretty dang pseudosciency. I know that we're trying to find solutions for ourselves and that ANYTHING that works will be worth it 100x over, but wanted to let you know in case you hadn't read any info about that.

 

Phenibut also seems to temporarily "cure" people's depression before they get a tolerance as well, if you search on the topic. There's even mentions of using phenibut for anxiety and depression on this board.

 

I do think you should continue with your doctor to see how that works, but I don't think it's wise to forever ignore the emotional aspect. You don't have to drive yourself crazy, wondering if you've gone mad or anything - just be aware that brain chemistry can in fact also cause all these symptoms, and trauma can alter brain chemistry, and there are ways to reverse this (ie talk therapy, antidepressant drugs, cbt, exposure therapy, etc).

 

You certainly don't need to pray more, or "Just accept things", or anything like that.. you need to logically reason through what happened to you as a child, how that has affected your behavior, and how that affects your mood and health now.

 

Actually, based on your last sentence, I'd guess that you're the type that thinks you had a hard childhood, and that it never affected you. That you don't need therapy because you've got it all on lock. Have you ever been to therapy? Do you express ALL emotions, such as anger, sadness, fear, jealousy? Are you afraid to have conflicts with strangers, or with people close to you? These are all rhetorical, just food for thought.. I thought I had things on lock too. Cheers.

[simonjb]

Brainfogboy I'm sorry to hear that it drove you to that, I agree with a lot of what you say. I'm not going to rule out a psychological component, as I must cover all bases. However my instinct tells me something is inherently wrong with my body's physical ability to sleep. I look forward to finding out of the vagus nerve stimulation works out!

Unrefreshed turtle, I don't have a traumatic past, nor do I have PTSD. I suffer from SAD, but this problem is very different from the sleep onset insomnia I get during the winter, which can be controlled with melatonin and a light box. My current Anhedonic and depressive symptoms came about after this issue started, and go into remission upon having a slightly more restful sleep. My ability to manage stress has deteriorated with my tiredness and brain fog. We may all have different causes, but I do experience the same symptoms of highly fragmented, unrefreshing sleep. Last night was a bad night, despite my use of a benzodiazepine and feeling very unstressed and not anxious.

I currently take Moclobemide for those symtpoms and whilst it definitely helps mood, it like so many other drugs, has no discernable impact on my sleep.

I have had limited success with Phenibut, with more use coming from the aforementioned anticonvulsants.

Can I ask all of you if you have any dopamine related symtpoms, such as Anhedonia, muscle or hand tremor, restless leg syndrome etc?

[brainfogboy]

Doctor told me I more likely than not have a mitochondrial disorder.  He's running bloodwork right now.  Says he has seen hundreds of patients with this condition, and that the only way for research to be done is when enough evidence is put forth that the CDC/NIH cannot deny it exists.  Many people are struggling with this (or something similar).  This is not a joke and this is not a conspiracy.  The dude is receiving grant money and has been studying autonomic disorders his entire career.  I feel like I am in good hands in Milwaukee, WI.  IT IS NOT IN YOUR HEAD.

 

This blame the victim mentality needs to stop.  What the patient says he/she feels should be taken as gospel, not argued against and downplayed.  The patient is begging for help, not looking to be mentally destroyed by "medical professionals".

Edited by brainfogboy, 19 June 2017 - 06:41 PM.

[simonjb]

If it's a mitochondrial or metabolic disorder of a sorts, perhaps supplemental Coenzyme Q10 paired with Nicotinamide Riboside and Pyrroloquinoline Quinone (PQQ) may be able to have some sort of impact?

 

I also don't think it's in my head, but being a man of scientific nature, I must rule it out with experimentation. I.e. currently trying antidepressant therapy. Not had much success with it so far.

 

I'd also theoretically be interested in persuing CBD (Cannabidiol) or if necessary actual medicinal quality cannabis, as the endocannabinoid system is something which I have not yet targeted in trying to treat this.

Edited by simonjb, 19 June 2017 - 08:36 PM.

[UnrefreshedTurtle]

brainfogboy, I'm really excited for you. Does that doctor have a web site with more information? I'll be honest, what you're describing DOES sound like the typical "medical institutions have got it all wrong!" stuff, BUT I do understand that western medicine is very close minded and has an infallibility complex. So, I would be very interested in hearing what this guy has to say.

 

To clarify, I don't think it's "all in my head", nor in yours.. I'm certainly not trying to victim blame. I'm also going through these symptoms, it really sucks and I know you have no control over it currently. At least I don't have any control of them.

 

In the past few months, I've noticed that I have been experienced panic attack type symptoms, and honestly I think I have been feeling them for a long time while being unaware. And I'm remembering and working through all these emotions and what not at the same time. For me, these two issues seem inextricably linked. If I ever find a cure perhaps that will tell me more about the cause, but perhaps not.

 

I have tried medical cannabis containing both THC and CBD for these anxiety issues, it does seem to help a bit but not much. I think that CBD would be a good option to restore restful sleep. I believe my next, most helpful step will be to have a polysomnogram done since I have many "signs" of sleep apnea, and I think a diagnosis and CPAP could possibly fix a lot of my issues. I tend to agree that sleep issues are a big part of this. But I'm also thinking that PTSD may be causing sleep issues for me.. at the very least insomnia. Hence linkage, at least for myself.

Cheers everyone, hope to feel better soon

[brainfogboy]

It's all bullshit, all of it.  I fasted for 24 hours and was completely fine.  1 bite of food to break the fast (pizza, thought I'd treat myself) and the fog IMMEDIATELY came back.

 

I take back what I said.  Sleep doesn't matter.  Being refreshed doesn't matter.  Food is drugging me.  I'm going to put it to the test.  I have some Adderall lying around.  Normally this would ruin me, and if I didn't feel good before taking it, it would only make matters worse.  I'm going to fast for 24 hours and then take it, and see if it has an effect.  I don't think stims are causing bad reactions, I think the bad reactions are preventing them from working.

 

It's something dealing with food.  I've said this countless times before, and it's amazing how quickly I forget.

 

Do any of your symptoms go away when fasting?  Does anyone here have complete symptom relief upon fasting?

Edited by brainfogboy, 28 June 2017 - 08:34 PM.

[Dichotohmy]

This is going to be a big post, but I have been working on this response for the last few weeks off and on and I promised I would make an effort to respond.

Like I said, a lot has changed for me - some better and some worse. Still, some things haven't really changed at all.
 

 

 

In the better camp:

-- I don't have anhedonia anymore and really doubt I ever did. I have a significant increase in emotions. The only thing that seems to have helped this is time, rest, and learning to appreciate the positives I do have.

-- I have learned to acknowledge that sometimes we just aren't in control and this isn't necessarily a bad thing.

-- Motivation is better. I am pretty motivated now in general but...

-- I acknowledge something has happened to me that is a burden on my life and only allows me to do a fraction of what I want to do. I sustainably manage about 3-4 hours a day of productivity after which I am just depleted when it comes to physical and mental energy. This is about 33% of where I WANT to be, but a lot better than where I was 3 years ago.

-- Mornings are now the best time of day for me and pretty much where I get things done.

-- I don't wake up feeling like I got hit by a truck the night before, anymore.

-- I don't have any signs of IBS or obvious signs of gut trouble occurring anymore.

-- My appetite has improved significantly.

-- Dysautonomic-type stuff is a bit better.

-- Less muscular weakness than three years ago despite obviously losing muscle mass.

-- Muscle and joint pain is significantly better.

-- I have my nasal breathing pretty much under control so have less sinus, sore throat, or upper respiratory cooties.

-- My circadian rhythm is rock solid now and I can go to bed a little after sunset and wake at sunrise. I used to have some a possible delayed sleep phase and never felt good about a normal pattern of sleeping at night.

 

 

 

Things that have turned for the worse:

-- I hit the proverbial wall almost every single day around midday and the rest of the day is done. I do not get a second wind around nightfall. Caffeine and stimulants don't touch this and just make me wired and tired for the rest of the day. I'm not sure if this is because I'm most active in the morning now, or what.

-- I am still hypo-aroused, without fear and anxiety, and can only really feel truly "alive" by means of novelty, travel, or external circumstances imposing pressure on me. My perception of being bored is definitely worse. I am chronically bored. I have a real hard time listening to music and a better but still difficult watching movies and TV without seeking some sort of distraction or pointless walking around. I have a worse time trying to "relax" and sit still. This really sucks when I feel compelled to rest.

-- A healthy diet of lean protein, low carbs, lots of vegetables, etc makes me waste away. I eat whatever I want and typically calorie-dense things. I have still lost significant weight and am finding it very difficult to eat enough to gain ANY weight OR stave off the slow decline. That is because...

-- Eating sedates me worse than ever. What I eat seems to have no bearing on this phenomenon. The only way to manage this is eating smaller amounts more often. Maybe I do have some gut problems that I just don't understand because the bloating, discomfort, and other signs just aren't there anymore.

-- Instead, I've noticed that eating certain things like too much fat or too much difficult to digest foods (FODMAPs) don't really result in any obvious symptoms beyond being a sure way to experience even worse sleep quality.

-- I am having a worse time staying hydrated and get dehydrated more easily. Drinking more water is not the solution as I just pee it right out. Electrolyte loading helps a little, but not nearly enough.

-- My financial situation is unsustainable and I am mostly living off of my IRA.

 

 

 

Things that haven't really budged too much:

-- I still get my ass kicked by a delayed malaise and worsening of symptoms if I try to push my 33% energy capacity. I haven't tried to seriously resume weightlifting, biking, or running, but I haven't seen good signs when I do try to reintroduce these things.

-- Syncope, pre-syncope, or otherwise passing out or nearly passing out upon rising are still there. I am still very cold intolerant and my feet are very difficult to warm in the cold. I do not really have such a problem with my hands anymore, which makes no sense to me. My body temperature is still low, my systolic is still pretty high despite low heart rate, my pulse pressure is still like 55-60. All of this is of course primarily worse when I've pushed that magic 33%

-- My sleep is still as unrefreshing as ever. The sleep architecture abnormalities and other odd sleep things I have written about are still going strong.

-- On bad days when I am compelled to sleep, I still never fall asleep for a nap. That pulling compulsion to do something still contrasts with being really fatigued and sleepy.

-- Still have the skin cooties.

-- Brain fog is still about the same on average. My inattention is about the same. I still have a weird feeling of head pressure when the brain fog is really on. I still have sensory-gating issues and heightened senses as much as ever.

-- Still have the joint crepitus, stiff muscles, stiff joints, and stiff posture even though pain has subsided a lot.

 

 

I'm now investigating the possibility I have some sort of obscure or atypical gut condition. I have never given this possibility much credence because the typical signs of bloating, gas, motility abnormalities, constipation or diarrhea, or discomfort aren't there. Its interesting how eating certain things can result in no other obvious symptoms beyond making my sleep quality even worse. Its also curious how I can eat so much and be so inactive and still struggle with keeping weight on -- let alone gaining weight or muscle mass. I also know that eating should not be as sedating as it is for me.

Edited by Dichotohmy, 02 July 2017 - 03:23 AM.

[Dichotohmy]

I am trying to be concise here. Please let me know if you want me to elaborate or think I'm deflecting any questions.

 

 

Text snipped to make this easier to read...

 

 

I agree that so-called mental illnesses are real diseases and I would LOVE to get or have gotten real results by pursuing that avenue. I would have no shame in accepting that a psychiatric or psychological treatment helps me if it did turn my life around. I might feel a little foolish for attributing my problems to some nebulous cause when the solution was right there, but I would assuredly get over it real quick over the relief to be living a healthy life again. I just haven't gotten anywhere close to remission from honestly pursuing those avenues. I guess its possible I just haven't pursued those avenues thoroughly enough, but I mean I just haven't gotten ANY sort of significant and noticeable improvement to make me think its worth further pursuit. 

 

I think it was hyperbolous of me to say I could be diagnosed with PTSD. I don't want to downplay the seriousness of that condition and the real suffering it causes people and was in poor judgement of me to say I could probably have it. I do not satisfy the diagnostic criteria of PTSD beyond sleep disturbance and the fact that low-level traumatic things have happened to me. I do not feel like I have unresolved trauma and I am highly skeptical of the notion of repressed trauma existing. At the same time, yes I had a number of bad things happen to me when I was growing up which I can clearly remember, but which I have learned to view in a neutral light as just my history. I have learned not to hold grudges and I forgive the people who have done bad things to me. At the same time, I have never, ever experienced a really horrible thing like sexual abuse/assault or grevious violence, nor have I done cruel and horrible things like that to anyone else. I have never had anything happen to me that scared the living shit out of me or made me feel helpless. From my research, it is the fear and adrenaline response (or in the case of C-PTSD, responces) to a trauma that leads to the epigenetic changes that are most likely really behind PTSD. I don't downplay the fact that bad things have happened to me, nor do I forceably avoid memories or emotions, and I don't have a psuedo macho inner voice telling me I'm a pussy if I do acknowledge that I have been done dirty and victimized.  

 

I don't buy the notion that there are psychological gremlins living in parts of the brain you can't consciously access, that you don't realize you have but are pulling strings and causing all sorts of weird and debilitating symptoms. To me, that's just a strange way of interpreting the fact that there are complex brain and perhaps epigenetic processes nobody understands. I wager it is those biological processes pulling strings and causing all sorts of weird and debilitating symptoms. That is in my case, mind you. I don't have anxiety. I can say confidently I don't have traumatic experiences that I haven't dealt with or more than rarely think about; I don't have people in my life I haven't forgiven or asked forgiveness from, etc. I do not stress myself out EVER because I don't get stressed out, I am calm, cool, and collected really to a fault. I live and let be, accept that its OK to not always have control, and try to live my life as meaningfully as I can. I can mindfully observe my thoughts without them resonating in any sort of negative manner. I most certainly am not thinking of terrible things and putting myself in a bad mood before I go to sleep, and conversely, I am not getting myself hyped up or hypomanic and finding it difficult to sleep. The quality of my sleep is still likely to be totally awful, despite also practicing textbook sleep hygiene, and I still have weird and debilitating symptoms.

 

I actually do accept and can see how its possible that for some people thoughts and thinking can do things like make one stressed out, stimulate the sympathetic nervous system, and this sort of anxiety can then wear the body down and destroy sleep which leads to somatic disease states. In that respect, somatic symptom disorder is probably a REAL thing, but I also think it is a rare thing and likely over-diagnosed and used as a catch-all when the medical practitioner can't figure out what is wrong. I can also see that psychological therapies will help if that is your problem. That just doesn't seem to be my problem and I have gotten pretty much nowhere trying psychological therapies. I mean, I am now a lot more able to cope with my life now that I practice some mindfullness and search for meaning in life, but at the same time that doesn't give me the physical well being, or other metrics of health to get beyond living at essentially 33% of my known capacity when I would very much love to rise towards 100% I don't believe I haven't tried hard enough or that there is some therapist out there who is a miracle worker where all else (including me) have failed, and can get to the bottom of psychological gremlins I haven't considered or can't comprehend.

 

I do believe that the brain is going to be conscious of psychological stress and anxiety if it is experiencing those things, otherwise you're just acknowledging biological processes and calling them stress and anxiety. Biological stress is something different and can be caused by a lot of things that affect homeostasis. I acknowledge that I no-doubt have biological stress occurring in me. Sympathetic nervous system overdrive (which I don't have) is perhaps one case of physical anxiety one could overlook, but can also be caused by a ton of other things. I don't think I have physical anxiety.

 

I have sort of confirmed my sleep health with a polysomnogram. I would like to try another one, but I have bad health insurance right now and just can't afford a polysomnogram out of pocket. I agree that sleep is a basic necessity of life and health and poor sleep WILL cause problems. I practice good sleep hygeine, even though it doesn't make any difference in overall sleep quality for me beyond making it easier to fall asleep. I agree that fixing my sleep quality is a big thing for me to pursue and that fixing my sleep quality could well fix everything else. There is something clearly wrong when something as basic and involuntary as sleep is more like a horizontal time machine rather than a refreshing recharge.

 

Getting a second hand apap machine is on my radar, even though I feel like I have my nocturnal breathing under control (more below on that).

 

 

Hi all, and to Dichotomy in particular.

 

I suffer with the same set of symptoms and have also read this thread all the way through. This thread is the first compelling lead I have had in over a year, since the gradual onset of these symptoms a couple of years ago.

 

I have severe sleep fragmentation, which thanks to an NHS Polysomnographic sleep study, has revealed that I have many arousals to N1 (very light sleep) per hour, a loss in total slow-wave sleep (reduced by about 5-10%). The most compelling find however was that my total REM sleep percentage was consistently under 10%, whereas it should be 25%. My REM latency averaged 146 minutes, and was significantly longer on a couple of tested nights.

 

Correlated with my sleep disturbances, is an inexplicable increase in heart rate, which is not associated with any SpO2 (blood oxygen saturation) events, I have no sleep apnea (less than 1 per hour AHI) and no associated respiratory comorbidities.

 

I suffer from constant brain fog, fatigue that is worsened by exercise, depression, and cognitive deficits including memory. I also have an unsual essential tremor that is far worse in the morning, as are most of my other symptoms except sleepiness which persists. I am quite convinced that my fragmented sleep is the cause of my symptoms, but the root cause of that itself is still unknown. One compelling piece of evidence for this was one night many months ago where I slept really well on a combination of Zopiclone and Piracetam (acute not chronic), I have not been able to repeat that night. When I awoke from that sleep, I felt groggy, but I knew my sleep had been deeper than usual. That day my cognitive deficits were reduced and overall brain fog was massively reduced.

 

 

I'm not even sure fragmentation means anything for me anymore, or if it does, is a red herring. I have had really awful fragmented nights of 10 or more memorable/conscious awakenings and eventually woken up refreshed in the morning. Conversely, I have on a few occasions managed to sleep for almost six hours straight, and then gone back to sleep an extra 1.5 hours after that and been groggy and unrefreshed when I eventually woke up. I can say I rarely manage to sleep beyond 4.5 hours straight in my re-callable memory. Usually I wake up after the second sleep cycle when I am in REM, and then tend to keep waking up in the middle of a dream for the rest of the night.

 

I still wonder if I have UARS even though I have my breathing under control with a nostril dilator, an inhaled corticosteroid, afrin, and taping my mouth shut every night. I used to have big problems with mouth breathing in sleep and frequent sore throat and upper-respiratory infections before I got my nocturnal nasal breathing under control.

 

My gut feeling is that REM is my answer to getting refreshing sleep. When I do wake up refreshed, I notice it is almost always after a night of vivid or otherwise dense dreaming. I also wake up a lot on those nights of increased REM activity, which is why I'm not sure having a fragmented sleep architecture means much. I think science has it dead wrong when it comes to the view that REM sleep isn't that important.

 

I would love to have a sophisticated EEG and pulse oximeter for a few weeks to get to the bottom of my unrefreshing sleep, but comparably crude measures like journaling, the Zeo, and maybe recording myself sleeping remain the best I can do. That polysomnogram I took wasn't very representative of a typical sleep for me. I mean I got some insights from the test and I had a prolonged REM latency and little total time in REM, and I did in fact wake up very unrefreshed in that hospital bed, but I also had a hard time falling asleep during the test which I definitely do not experience in a comfortable bed in a comfortable room.

 

I have unsuccessfully tried to treat my sleep with a whole host of various drugs including benzos, non-benzos (z-drugs such as Zopiclone), sedating antidepressants (mirtazapine, trazodone), first-generation antihistamines, and melatonin. Many others including a variety of herbs, supplements, and nootropics.

I hope you are all well as you can be.

 

By cytokine blocker, do you mean like a TNF-A antagonist such as Humira? I never have tried that and I don't really know of much in the way of other bonafide cytokine blockers. I have tried plenty of things purported to boost anti-inflammatory cytokine action with nothing noteworthy to say, but good old Ibuprofen remains an effective thing for me. To a lesser extent, zinc being an immune modulator is effective too, but not as immediately, effectively, and dependably like Ibuprofen. 

 

Tianeptine is still the only psychiatric drug I've ever tried that seems to consistently help me, in terms of sleep quality or anything consistent for that matter, but the benefits aren't strong enough. Curiously, real opiates do help too, but are of course with unmanageable diminishing returns. The exception to that would be tramadol and DXM (an opiate in terms of sigma agonism), which both give me wicked insomnia and ruin my sleep quality like other SNRIs. Alcohol remains the other drug I have ever noticed to consistently improve my sleep quality even though its a really problematic drug for me and the dosage window is very tricky - IE drinking even a little too much ruins my sleep quality. A tolerance-naive dose of various gaba ligands, NMDA antagonists, Z-drugs, or benzodiazapines might make my sleep higher quality or they might not - they aren't anywhere as close to dependable as alcohol, which itself is pretty undependable. Trying to use gabaergics or anti-glutamate ligands a second night (or more) in a row is guaranteed to make my sleep quality worse. Things with anti-histamine action are especially bad in ruining sleep quality for me. Anti or pro sertonergic ligands and reuptake inhibitors are slightly less bad than anti-histamines, but also ruin sleep quality for me. Racetams give me sleep-onset insomnia. Alpha blockers have a paradoxical effect on me and make my sleep worse. Beta blockers work as they should for me, but don't seem to make sleep better. I can sleep on caffeine and other stimulants, but its going to be sleep with significantly more stage 1 activity and be noticeably less refreshing when morning comes.

 

I've never tried any antipsychotics or bonafide dopamine agonists. I can't say I've tried many cholinergics, but choline supplementation doesn't help with sleep quality and I'm very sensitive buproprion as I've written earlier (weak anti-cholinergic). Low-dose buproprion makes my sleep quality worse. Melatonin lowers my sleep onset from 10 minutes to more like 5, but doesn't help sleep quality, so I have no desire to try agomelatine. 

 

Stimulants still don't work positively for me unless I take them after high-quality sleep. I agree with brainfogboy when he says below its probably something else making the stimulants have non-positive effects instead of the stimulants inducing non-positive effects. I group those drug classes together because I've found different drugs in the same class do not behave differently. 

 

I have come to the following conclusions:

1. When a problem is effectively addressed the solution is immediate.  Think: antibiotics for infections, Valium for anxiety, orgasm for sexual release, etc.  There is a binary correlation between cause and effect.  If we indeed live in a world of causality, then there is no long term, drawn out, "Take these pills, wait a few days, take more supplements, wait a few days, start meditating and having more sex, and in 6 months your problems will go away".... it just doesn't work.  If you can address the root of the problem, IT GOES AWAY IMMEDIATELY.  If this is correct, we can be moments away from a cure.  Therefore,

2. We are not addressing the right problems.  Zinc and other supplements shouldn't be needed for maintenance.  The underlying problem isn't being addressed.  It is attempting to manage symptoms in relation to an underlying problem.  This is not okay.

3. We are over-thinking the problem.  We don't need a million supplements to get better.  We don't need any.  Something is off within us and we need to make it right again.  If  supplement can act as a catalyst for this, then so be it, but maintenance doses on supplements aren't needed.

 

Here's what I think it is, based on some recent results:

 

Unrefreshing sleep.  BURNOUT.  This has been stated over and over again.  Whether it's lack of REM, or non-REM... it doesn't matter.  Sleep is fucked.  The question is why?

 

 

I agree completely when one finds something effective, the benefits are noticeable immediately - even if the benefit you notice is subtle and only really builds to a very noticeable level over time. It is unwise to keep pouring time and effort into a solution in the hopes that it might start working if you just keep at it. Sleep used to be a real reset for me if I was feeling run down, it was dependable that I would get a good night sleep if I practiced good sleep hygiene. It hasn't been dependable for a long time that I will get a good nights sleep if I put in the effort to, yet a good night's sleep remains an immediate and noticeable benefit if I just so happen to get it.

 

Edited by Dichotohmy, 02 July 2017 - 03:17 AM.