140 replies to this topic

[Dichotohmy]

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 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?

 

I may have RLS and do have some faciculations but I don't think it affects my quality of life or necessarily means anything. I have ADHD myself and Parkinsons in my family. As I said, I'm not sure I ever had anhedonia as opposed to just being too burnt out from calorie deficit and daily stimulant use to do much of anything. I certainly don't consider anhedonia a symptom to embrace and I find it kind of troubling how people on the internet seem to fixate on it when its clearly hard to touch with any treatment.

 

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

 

I've smoked my share of weed over the years. I have never found it particularly fun, or significantly beneficial for anything, and honestly feel almost no desire to use it despite having a good stash. In my case, an acute dose of CBD weed is ok for helping muscle and joint pain, and THC weed can really open up my perceptive skills and look at things in a new way like no other psychotropic drug does, but extended use of either type seems to make me really cognitively flat all the time and takes my ADHD from moderate to severe. CBD weed or THC weed do not induce subjectively restful sleep for me either in the short term and especially not in the long term. Medical marijuana is considered a novel treatment for sleep apnea, probably because THC is a bronchiodialator and does objectively lower the total duration of REM where sleep-disordered breathing is typically worse. On the other hand, I'm pretty sure I need more REM sleep even if I do have some sort of SDB like UARS.

 

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

 

The longest I can recall not eating is around 20 hours and by the end of that I was having obvious hypoglycemic-type symptoms in addition to everything else. That was about two years ago and I believe I was trying to fast but was so turned off by the experience I haven't tried it again. I have to admit I've never tried going beyond 20 hours in my entire life, even while sick with the flu or some intestinal bug in the distant past.

[brainfogboy]

Dichotohmy,

 

While the VA sucks, they're helping me out with housing.  HUD-VASH.  30% of income, whatever I make, and I can get my own apartment.  I highly suggest you start looking into this before your savings run out.  However much money you have in savings doesn't matter, since it's only based on your income.  I highly recommend you start working with a case worker through the VA, because sometimes the wait can be months before you can get a place.

 

Don't end up like me.  I was on the street and eating out of the garbage.  I was so tired I was passing out on the sidewalk and people thought I was a bum and would just step over/around me.  Everyone left me for dead.  I had nothing left and was filled with too much pride to ask for help.  How ridiculous.  I ended up in a psych ward, was able to bank some SSDI for several months, and so I have a little money to play with while they are trying to permanently house me through HUD-VASH (early next week).

 

The criteria is homelessness.  I don't know if you have a lease or what, but if you explain the situation or tell them you don't have means to support yourself they should be able to work with you to find housing.  The last thing you need is to be this sick, this tired, and on the street.  I'm really surprised I'm still alive.

 

One last thing:

 

There is supposed to be a medical food called "Enteragam".  It's supposed to bind to toxins caused by bacteria in the gut.  It's non-absorbable and can be taken long term.  In addition to the vagal stimulator that I will be getting in mid-July, I'm going to try and see if the VA can script this for me to try.  

 

Here's a website on it:  http://enteragam.com  

 

and here's a study on gut bacteria and chronic fatigue syndrome: https://www.scienced...70426092351.htm

 

Maybe we're just struggling with a form of toxic overload from some sort of gut fermentation.  I had a full night of sleep the other day, felt wonderful waking up, and had 2 slices of bread and passed out in the library for 4 hours.  If this stuff actually works, and isn't bullshit like everything else, I'll find a way to get you a box (it comes in these packets you mix with water).

 

 

[teacult]

I am very happy to see you ok. And i am happy that I was right, because I have given same advise to a lot of people.

If you remember my answers about ditching stimulants, rest & recovery and job demote, you can reread it. A lot of people wrote against it. Only real boost comes from positive emotions, and it comes from truth and eustress, also from positive thinking. If it was built on truth you grow, else you feel frustration. Instead of overclocking the body and mind you should improve architecture of both with good software (delicate solutions and wisdom).

I wrote like close minded grandfather, because i struggle with cell phone keyboard no energy left to be polite )

Edited by teacult, 02 July 2017 - 09:35 AM.

[simonjb]

I'm now investigating the possibility I have some sort of obscure or atypical gut condition.

 
This is a logical avenue for investigation, because of the relationship of gut health (notably microbiome health) and immune modulation. This mechanism has been indicated in all sorts of conditions, including the more severe ones such as parkinson's. I have worse gastrointestinal health than I used to, correlating with the onset of symptoms which is highly suspicious. I am currently using live greek yoghurt and kefir to assist my microbiome. Helping with the digestive issues, but not much else yet.
 

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 mean I got some insights from the test and I had a prolonged REM latency and little total time in REM

 
I would agree with this too, the lack of REM sleep is very important. Pregabalin/Gabapentin increase slow wave sleep, and whilst helping my physical exhaustion, this does not have any effect on the brain fog. Nights with lots of dreaming do seem to make me feel a little better. Some cholinergics/NE inhibitors such as Huperzine-A, Bacopa, and DMAE do seem to have a positive influence on dreaming, but their effect is slight and not very consistent.
 
My total REM time was also low, with a higher REM latency that is classic of fragmented sleep architecture. I think this similarity is very relevant.
 

By cytokine blocker, do you mean like a TNF-A antagonist such as Humira? 
 ...
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.
...
I've never tried any antipsychotics or bonafide dopamine agonists.
...
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.

TNF-Alpha antagonists are exactly what I mean. Slight overall systemic and appetite improvements have been noted from Milk Thistle and Cat's Claw herbs, these are only slight - but consistent. I do wonder whether a systemic corticosteroid or TNF-Alpha reducing medication would have any effect on the illness.

 

Tianeptine does unreliably help my mood, but had no effect on my sleep. I have no desire to try opiates because of the risk of dependence and side effects such as constipation. However the fact that they help rather than making things worse is quite interesting. Opiates are known to help with Restless Legs Syndrom (and Periodic Limb Movement Disorder), which causes fragmented sleep. I have not been diagnosed because I am "too young" to have such a condition, but I am persuing the dopamine agonist Pramipexole to test the theory for myself; as DA agonists are usually effective.

 

Amisulpride in low doses acts oppositely to it's higher-dose antipsychotic action; as a result the improved dopamine neurotransmission does help a little with my cognition until tolerance sets in. Definitely an occasional thing, but it helps.

 

Melatonin also helps set my circadian rhythm and improves sleep onset, but doesn't help sleep quality. However Agomelatine has been noted to improve disrupted sleep architecture by both melatonergic mechanisms and it's blockade of 5HT-2C receptors; which normally limit dopaminergic neurotransmission. The interaction of these and the longer half life of the drug makes it function differently to melatonin. I think it's worth a shot if I can get it prescribed, if not then I have ruled out something else.

 

Lastly, I have tried Sulbutiamine to assist with the fatigue, as it is often used in other fatigue conditions such as CFS/ME. So far some limited improvements in brain fog, but these are dependent on my sleep still. Continuing to persue as the prolonged effects are what I want to test.

[brainfogboy]

I am very happy to see you ok. And i am happy that I was right, because I have given same advise to a lot of people.

If you remember my answers about ditching stimulants, rest & recovery and job demote, you can reread it. A lot of people wrote against it. Only real boost comes from positive emotions, and it comes from truth and eustress, also from positive thinking. If it was built on truth you grow, else you feel frustration. Instead of overclocking the body and mind you should improve architecture of both with good software (delicate solutions and wisdom).

I wrote like close minded grandfather, because i struggle with cell phone keyboard no energy left to be polite )

 

I don't understand this guy.  There is a difference between living an easier life and being so mentally and physically fatigued you can barely function at all.  Dichotohmy, like myself, is not recovering.  Eustress and truth have absolutely nothing to do with it.

 

I was living on 3 hours a night in high school, while crashing for 12 hours on weekends, and doing this for over 3 years.  I was always one good night sleep away from recovery.  I held 3 jobs while in high school and worked myself like crazy.  If i was going to suffer something major from stress it would have been then.  Getting older has nothing to do with it either, since these symptoms of mine started around 22 or 23, only a few years after high school (and the Army).  Life (school, work, play) was so easy it was a joke, and I regularly pushed myself to extremes because I could.

 

Now I barely have the energy to brush my teeth.  I have zero energy to run on, which is a complete 180 of what I used to be like.  I feel like I've been betrayed by my body, and the mind has nothing to do with it.

 

I think teacult is more concerned with being right than anything else, like he's trying to push some kind of agenda.

Edited by brainfogboy, 02 July 2017 - 10:05 PM.

[JONELL]

I see I'm not alone.

Right, I've gone down the long route of validating whether sleep is or isn't at the core of these hellish symptoms.
I don't believe it is.

Look into the brain and CSF pressure. Those areas explain our symptoms to a T and are treatable.

Anyway, I'll try to provide an update should I have any.
Life like this has been a two decade long nightmare, not knowing if I'm asleep or awake.
Fucks sake.

[brainfogboy]

Low or high CSF pressure?  I had a spinal tap and I was 21 (slightly elevated from what he told me, but nothing to worry about).  I've also read of CSF leaks from people who have sinus problems.

 

Have you been tested?

[JONELL]

I was referring to leaks.

Also Chiari malformations and intracranial pressure.

Seeing a private Neurologist that specialises in this next week.

[brainfogboy]

I was told I didn't have Chiari.

 

My neuro hadn't a clue as to what he was doing.  These people are so ridiculously stupid I can't believe they make the amount of money they do.  If you find a good one please let me know and I'll drive across the country if I have to, in order to see him.

[Dichotohmy]

Dichotohmy,

 

While the VA sucks, they're helping me out with housing.  HUD-VASH.  30% of income, whatever I make, and I can get my own apartment.  I highly suggest you start looking into this before your savings run out.  However much money you have in savings doesn't matter, since it's only based on your income.  I highly recommend you start working with a case worker through the VA, because sometimes the wait can be months before you can get a place.

...

One last thing:

 

There is supposed to be a medical food called "Enteragam".  It's supposed to bind to toxins caused by bacteria in the gut.  It's non-absorbable and can be taken long term.  In addition to the vagal stimulator that I will be getting in mid-July, I'm going to try and see if the VA can script this for me to try.  

 

Here's a website on it:  http://enteragam.com

 

 

Thanks, I had no idea there was such a VA program. I must not have read my helpful VA info packet carefully enough, or this is a new program from them I never knew about because I wasn't paying attention. I honestly don't know what would happen if I run out of savings and I'm still so gone that I can't earn enough in wages to afford the basic necessities. I haven't planned for such an inevitability at all. On the other hand, I am completely unable to envision or plan for ANYTHING that far ahead in time. Trying to think about becoming destitute does absolutely NOTHING in making me anxious and thus fails to spur action on my part to avoid. Folks, having ADHD with no anxiety is not good because when you are without fear, or the executive functioning to effectively plan ahead, not only do you tend to gravitate towards extreme situations and danger you should avoid, but you don't have that nagging bit of anxious thinking there to motivate you to plan for avoidance of calamity.

 

Yeah, let me know how enteragam works for you, because I am pretty wary of stuff that smells like snake oil to me (and enteragam does) that I won't try it myself without glowing reviews.

 

I am very happy to see you ok. And i am happy that I was right, because I have given same advise to a lot of people.

If you remember my answers about ditching stimulants, rest & recovery and job demote, you can reread it. A lot of people wrote against it. Only real boost comes from positive emotions, and it comes from truth and eustress, also from positive thinking. If it was built on truth you grow, else you feel frustration. Instead of overclocking the body and mind you should improve architecture of both with good software (delicate solutions and wisdom).

I wrote like close minded grandfather, because i struggle with cell phone keyboard no energy left to be polite )

 

Ditching stimulants, quitting my job, quitting school, and resting definitely helped. However, it has not helped enough by any means and I can't keep resting and not studying or working for the rest of my life. Thinking positive, making an effort to be understanding and tolerant of people who anger me, and doing charitable things for other people are all useful to me for anhedonia and psychosocial relations with other people. When things frustrate me, and I have always had a low-frustration tolerance and probably always will, I try to view the frustration as nothing personal and just tell myself "such is life." I actually credit these things as being a big reason why my anhedonia (if it ever was that in the first place) has receded and I feel significantly more emotions nowadays.

 

Unfortunately, those things still haven't done much of a thing in improving the symptoms that actually impair my ability to live a healthy, productive, and meaningful life.

Edited by Dichotohmy, 19 July 2017 - 11:35 PM.

[Dichotohmy]

TNF-Alpha antagonists are exactly what I mean. Slight overall systemic and appetite improvements have been noted from Milk Thistle and Cat's Claw herbs, these are only slight - but consistent. I do wonder whether a systemic corticosteroid or TNF-Alpha reducing medication would have any effect on the illness.

 

Tianeptine does unreliably help my mood, but had no effect on my sleep. I have no desire to try opiates because of the risk of dependence and side effects such as constipation. However the fact that they help rather than making things worse is quite interesting. Opiates are known to help with Restless Legs Syndrom (and Periodic Limb Movement Disorder), which causes fragmented sleep. I have not been diagnosed because I am "too young" to have such a condition, but I am persuing the dopamine agonist Pramipexole to test the theory for myself; as DA agonists are usually effective.

 

Amisulpride in low doses acts oppositely to it's higher-dose antipsychotic action; as a result the improved dopamine neurotransmission does help a little with my cognition until tolerance sets in. Definitely an occasional thing, but it helps.

 

Melatonin also helps set my circadian rhythm and improves sleep onset, but doesn't help sleep quality. However Agomelatine has been noted to improve disrupted sleep architecture by both melatonergic mechanisms and it's blockade of 5HT-2C receptors; which normally limit dopaminergic neurotransmission. The interaction of these and the longer half life of the drug makes it function differently to melatonin. I think it's worth a shot if I can get it prescribed, if not then I have ruled out something else.

 

Lastly, I have tried Sulbutiamine to assist with the fatigue, as it is often used in other fatigue conditions such as CFS/ME. So far some limited improvements in brain fog, but these are dependent on my sleep still. Continuing to persue as the prolonged effects are what I want to test.

 

I am very interested in tests or other info to elucidate a mystery gut condition that presents in nutrient malabsorption, postprandial fatigue/sedation, and potential sleep disruption as the only apparent symptoms. It seems to me that every gut condition I've read about also presents some mix of pain, motility abnormality, constipation or diarrhea, bloating, intense fatigue ALL THE TIME, or food allergies. Beyond the three symptoms I mentioned, I do not have the last six.

 

I have tried a course of cat's claw and didn't get anything beyond the supplement acting as a weak stimulant. I have never tried Humira but am curious to if I could ever afford it without copay, or for some far-out reason a VA doc prescribed it. I have tried a 3-month course of prednisone and methyl-prednisolone, and both are very effective alternatives to ibuprofen for me at low doses. In fact, those corticosteroids are so effective for the things I use ibuprofen for, that I didn't use any ibuprofen at all while on the steroids. Unfortuntately, I am sensitive to both the steroids I mention and anything beyond 5mg or so make me very wired and tired when taken after unrefreshing sleep and in fact, I believe the steroids also gave me sleep onset insomnia and lower sleep quality while using them - thus making ibuprofen the better solution after all.

 

Tianeptine and other opiates are remarkably effective if I am having a borderline-malaise day, or I just need some relief right now to power through the zombieness and get something done. If I am in full-on run-down and half-dead mode, opiates do not salvage the day or make me able to get things done. Tianeptine is the only effective anti-depressant I have ever tried, instead of acting like sedatives and apathy pills like the dubiously-named SSRI/SNRI antidepressants. Tianeptine does build tolerance for me and might have had some noticeable withdrawal when I have quit after regular prolonged use - just like other opiates. Tianeptines and real opiates are not the answer, let alone a really sustainable answer, so I use them sparingly as they do definitely help if used wisely.

 

I'm familiar with amisupride's action at low doses, and how other AAPs can act as partial dopamine agonists at low dose. I am also familiar with the theories of how dopamine is probably mostly an inhibitory NT and can also calm down an immune system that is overactive or devoting resources to the wrong things. I just don't think dopamine/NE is really the answer though as I have lots of experience with psychostimulants, both illicit and prescribed, and have never gotten consistent ADHD relief from them (beyond reducing hyperactivity) in the last 3.5 years - let alone a solution to the core problems. When stimulants work for me, such as after a night of refreshing sleep, which is the only time they do work, they don't do enough for my executive function to work, and they don't boost my cognition enough for schoolwork. And yes, stimulants or low dose AAPs taking a D2-agonist route will lead to inevitable tolerance. 

 

5HT-2C antagonism does look great on paper, but agomelatine does not have a very high affinity for that receptor subtype. Unfortunately, everything that does have a relatively good affinity as a 5HT-2C ligand is non-selective. Indeed, 5HT-2C antagonists are usually anti-histamines as well, which massively sedate me and worsen sleep quality if I take them at bedtime. I don't have circadian rhythm complaints anymore and have no problem going to bed just after sunset and waking up (unrefreshed) at dawn, so I have reason to believe my endogenous melatonin production is OK. 

 

Sulbutamine is interesting in that it has made me feel much better at times. On the other hand, that was probably because I was heavy drinking and B1 depleted. Nowadays, acute or regular use of thiamine or sulbutamine in 200-500mg doses has subtle effects at best and I often times can tell nothing.

 

 

 

I don't understand this guy.  There is a difference between living an easier life and being so mentally and physically fatigued you can barely function at all.  Dichotohmy, like myself, is not recovering.  Eustress and truth have absolutely nothing to do with it.

 

I was living on 3 hours a night in high school, while crashing for 12 hours on weekends, and doing this for over 3 years.  I was always one good night sleep away from recovery.  I held 3 jobs while in high school and worked myself like crazy.  If i was going to suffer something major from stress it would have been then.  Getting older has nothing to do with it either, since these symptoms of mine started around 22 or 23, only a few years after high school (and the Army).  Life (school, work, play) was so easy it was a joke, and I regularly pushed myself to extremes because I could.

 

 

A big difference indeed. While I have recovered in the areas I have recently mentioned, it really is the poor-recovery from work and other energy expenditure, and ensuing malaise that follows, that is the true obstacle to functioning. Honestly, I am limited to a productive time of of 4-5 hours tops, in the morning, and then I am just done for the day. That's 33% of functioning. I could have a part-time job and I would have nothing left in the tank once I got off work to devote to feeding myself or seeking food, taking care of bills and other errands, and definitely not enough left in the tank for any sort of meaningful leisure. Full-time work is completely out of the question, and I can't make enough from part-time work to make my finances sustainable. And yes, I am constantly testing this 33% rule to avoid becoming complacent or deconditioned, but also because I'm constantly hoping this is where I break through, because I want to surpass that 33% and live my life again.

 

I think for me that the notion of eustress is important. Like I said, I simply do not feel fully alive outside of stressful, dangerous, or otherwise extreme situations - a piece of me is missing. I actually thrive under the exertions of more mundane stress and duress as well, but as in extreme situations, I only have the energy for a little while until eventually the 33% rule catches up and I crash. To a big extent, this stress-tolerance pattern has always been true for me, but in the past, I would just mentally shut down after a while instead of physically and mentally crashing from stressful exertions like I do now. When I was in the Marines I would frequently get put in stressful leadership billets, or get important responsibilities, and I would enjoy it do great for a little while. Inevitably, I'd get fired after my superiors saw that I started doing a shitty job after the honeymoon period was over. So yes, stress in MODERATION is good for me. Eliminating all stress is bad because it makes me unhappy and instead of not being able to function because I've crashed, I don't function because of not doing anything. The happy medium of moderation is hard to find.

 

I'm 35 now so maybe age has caught up with me to some extent. I went through middle school and ninth grade on 3-5 hours of sleep every night because of delayed-sleep-phase, plus had big family, social, and academic stress and it was comparably easy. I went through a year of using meth almost everyday, with all that entails, and it was comparably easy. All of the physical and mental stress of the Marines was comparably easy. Indeed, the difference back then is that my ability to recover from exertions was normal and I could always depend on AND take an opportunity for a good night's sleep being a reset switch that would leave me recharged the next day.

 

In essence, the real core issue is that my body (that includes the brain) just cannot, or does not, recover from the rigors of daily life like a healthy person's does. Everything else stems from that. The recovery doesn't happen because something is happening in sleep to make sleep unrefreshing and no-longer a recharge.

[brainfogboy]

For every one (or two) of us there are a thousand more that are able to operate at our previous level of functioning and maintain that for the remainder of their lives.  I went to high school with several friends that are now working on Wall Street, and are regularly putting in 80 (sometimes closer to 100) hour work weeks without any of the problems we are experiencing.  A few are in Investment Banking, a few are in Consulting, and a few more are in Private Equity.  These guys are making serious coin.  We used to know each other pretty well, and after reconnecting with them a few years ago (also a few years into this illness), they cannot believe I went down.  I was one of the people that was voted 'most likely to succeed' if you catch my drift.  People like Dichotohmy and I (and others) do not go down easy, and I hate to think of the other thousands (millions?) of people out there who are not as mentally/physically resilient as we are.  I'm sure many take their own lives (I tried to but was too impaired/zombified to even do it right - too sick to even kill myself, how absurd).

 

There is something seriously wrong and the mind has nothing to do with it.  Ignore Teacult.  He seems only interested in claiming how right he is, rather than doubting himself and trying to refute his claims in search for truth.

 

Dichotohmy, to be blunt, if you run out of savings you will probably not survive.  I had the not-care attitude as well, but thank god I was smart enough to get SSDI going a year prior.  If I did not have the little bit of SSDI coming in every month, I wouldn't be here.  I simply could not work, could not function, and eating on the road without being able to cook gets expensive.  I would drive past these guys holding cardboard signs, asking for change at intersections, and I would watch them, full of energy, run back and forth between cars.  Here I was barely able to keep my head above the steering wheel, and these guys were healthy enough to run around in the 100 degree weather every day of the week.  I have no sympathy for anyone who is up and about for the entire day, asking for handouts.  I wish I had the energy to do that.

 

Dude, you need to apply for:

SSDI

VA comp and pen

HUD-VASH

 

As soon as possible.  Wait times are killer.  Lie if you have to.  I flushed my honor down the toilet a long time ago, and it's keeping me alive.  We live in a poisonous society as it is, and people don't give two fucks about you.  Take what you can get when you can get it.  I'm aiming at the 25 meter target right now, because like you I cannot plan far enough ahead at all.

 

I haven't been able to get the Enteragam yet.  Still working with the VA.

 

I just got the Vagal Stimulator today and will be updating with progress.  None just yet.  Phone got shut off so I had to stop in the library to check email, and saw an update and wanted to post.

 

I stopped with all the research on neurotransmitters, receptors, supplements, etc.  It's all speculative and all bullshit.  None of it matters, and we could try an infinite number of things and still not hit the mark.  I think our hardware is fine but our reset button needs to be hit and it's just not happening.

 

Stay strong dude.  When I pull out of this I'm going to maverick the fuck out of healthcare, and I will get you better, that I can promise you.

 

 

Edited by brainfogboy, 20 July 2017 - 12:11 AM.

[Dichotohmy]

Alright, folks, this thread has run the course and I have made a new one HERE.. I won't be responding to this thread anymore.

 

I am not really looking for medical advise, but instead, meta-medical advise - or advise that helps me find good medical advise. I am no longer really interested in suggestions or explanations unless they are novel in nature or a breath of fresh air - as defined by common sense. I now believe I will likely never solve this on my own and need professional help, but as is so shameful a fact of life given the collective knowledge of medicine and the technological advancement of western civilization, finding good professional medical help is far from straightforward or easy

 

Thanks to everyone for reading and thank you to those who have provided constructive replies to this thread over the years.

Edited by Dichotohmy, 12 August 2017 - 01:40 AM.

[teacult]

teacult, on 02 Jul 2017 - 12:32 PM, said:

I am very happy to see you ok. And i am happy that I was right, because I have given same advise to a lot of people.

If you remember my answers about ditching stimulants, rest & recovery and job demote, you can reread it. A lot of people wrote against it. Only real boost comes from positive emotions, and it comes from truth and eustress, also from positive thinking. If it was built on truth you grow, else you feel frustration. Instead of overclocking the body and mind you should improve architecture of both with good software (delicate solutions and wisdom).

I wrote like close minded grandfather, because i struggle with cell phone keyboard no energy left to be polite  )

 

Ditching stimulants, quitting my job, quitting school, and resting definitely helped. However, it has not helped enough by any means and I can't keep resting and not studying or working for the rest of my life. Thinking positive, making an effort to be understanding and tolerant of people who anger me, and doing charitable things for other people are all useful to me for anhedonia and psychosocial relations with other people. When things frustrate me, and I have always had a low-frustration tolerance and probably always will, I try to view the frustration as nothing personal and just tell myself "such is life." I actually credit these things as being a big reason why my anhedonia (if it ever was that in the first place) has receded and I feel significantly more emotions nowadays.

 

Unfortunately, those things still haven't done much of a thing in improving the symptoms that actually impair my ability to live a healthy, productive, and meaningful life.

 

 

 

 

I am glad you have figured out all of this. The point is even if you are a turtle living around a swamp, your life is very meaningful.
Because the meaning comes from your ability to connect positive emotions, experiences, beliefs, preferences and your idea of your identity in your mind. They are already connected (naturally). However some beliefs and their manifestations disconnect them and create the illusion that your life is meaningless. Such as, it is good to be rich, powerful, strong, outperforming others etc. The truth is, everybody has its own genetics and growing environment. And it is irrational to treat them as equals. Combination of very high IQ, low rationality and low stress tolerance is very common. It is so common that a monkey can perform incredible scores in flashing number test and gets angry very quick and never acts rationally. As we get angry your amygdala hypertrophies and your hippocampus atrophies. When it reaches to the point where you cant stand some disconnect in pathway occurs. Memory pool gets smaller mental operations get faster. Most Hollywood films are appealing to people in this condition. So it proves that it is so common. 

The belief that someone is special because he/she is faster stronger /smarter is one of the most exhausting, mind trapping beliefs. Such beliefs disconnect us from what we really are, what we really enjoy, what our experiences really means to us. They override it. 
These are needs of others injected to us. They need someone to be smarter and stronger. We don't see our injected subconscious needs, we see them as wants, and they collide quite often because they are collected from different sources. 

Many of us in very bad shape and far away from to be whole within (including me apparently, otherwise why would I search answers in a forum ... ). So there is a very good and easy way to collaborate and reach each other by being understanding and compassionate to human (upgraded ape-like) condition. If only we can add others inadequacies and others problems to our problem and form a bigger solution for everybody, we all would respect and love each other and live in harmony. In other words it is usually said that we should "accept people as they are and world as it is". It means that we must formulate our problems including others needs without trying to change them. 

I will never be as smart as you are. Because I do not work and I do not perform anything requiring performance all day long. Wisdom and smart like tools like encyclopedia of mechanisms vs scissor and glue. One is detailed other is practical.  
When you lack physical tools and knowledge you get smarter as a survival mechanism. Last thing I want to emphasize is that the muscles of body and brain, the skill and art of movement of body and thoughts and all the riches in our life are the result of 
a process of having fun, joy and satisfaction.  If anyone aims for a very good body shape, he will exhaust himself in the process of getting fitter because it is an exhausting process. If anyone loves surfing and diving and do it several times a day, he will get happier, calmer and very experienced and skilled, because it is an enriching process. He also will get an insanely good body shape as a result. 

To Brainfogy:

I am very sorry to hear what you experienced. I carried my friend 3 times to hospital because of suicide attempt and waited days long for the recovery. 
I want you to know most of the forum users who tried to answer you have sympathized with you and they have wrote what they wrote because they care about you. 
Even anyone who says that you are a fuckbrain tries to tell you that you have the capacity to be better and to think better and they care about you. But they do it poorly because they cant stay stable in such matters. That is the human condition. 
Nagging is an evolutionary mechanism which affects you, if you are weaker than nagger, otherwise it is neglected. Thus it works like a charm under stressful environment and in stressed group of people.
Even people who are nagging and speaking badly about you are loving and caring about you. Because it is evolutionary and impossible to workaround other than being extremely ignorant. 
So I hope you get well soon. If you want to die again, at the moment, please remember to do it by performing something you love such as watching cartoon or swimming or eating pizza in excess (I dont know what you love). 
Maybe you will fail, since you fail getting fun. Thus you are a miserable fuck ) . 

[CharlieG]

You posted this so many years ago. How are you doing now and have you ever tried NMN? Sounds like an autoimmune issue. Not sure if you mentioned that, but I didn't see it in the post. And, you may want to take breaks from supplements at times as well to really get your body to do some work on its own. I really hope you are doing well many years later!

[Dichotohmy]

You posted this so many years ago. How are you doing now. I really hope you are doing well many years later!

 

Honestly, I'm noticeably worse and progressively getting worse and worse at a frog-in-boiling-water-like pace. There's some continuation of this thread in the part 2, which I linked above, but as of 2018 or so, I have lost hope and pretty much given up. I haven't seen a doctor since 2017, nor do I have any motivation to do so.

 

Some highlights I may or may not have mentioned in the part 2 thread:

 

- Positive ANA at 1:64 diultion and positive SS-A antibody test (5.0), which my GP and the rheumatologist with whom I consulted at the time were unconcerned.

- A joint-hyper-mobility-spectrum-disorder diagnosis, but no Ehlers Danlos genetic testing.

- A finding of autonomic nervous system dysfunction NOS - by that I mean my health-care team had no interest in specifying the dysfunction.

 

Some other lowlights that my meat-prison body has thrown at me since then:

 

- I burned up my savings and am broke and back living with my parents.

- Significantly worse, seemingly idiopathic post-prandial fatigue. Because of this, I actively avoid eating much before dinner time and my BMI is below 17.0 now.

- Stubborn myoclonic seizures, mostly noticeable when lying down but also sometimes occurring at any other time as well. 

- Coat-hanger pain, pre-syncope (including falls), orthostatic intolerance, polyuria, and dehydration-like symptoms, probably part and parcel with dysautonomia, all worse.

 

 

 

and have you ever tried NMN?

 

Nicotinamide Mononucleotide? No.

 

 

 

Sounds like an autoimmune issue. Not sure if you mentioned that, but I didn't see it in the post

 

I agree. I would like to repeat the ANA and common anti-body tests. I want to add some other tests as well.

 

 

 

And, you may want to take breaks from supplements at times as well to really get your body to do some work on its own

 

As a result of resignation to my fate, this is my strategy. I no longer take any prescription meds, OTC meds, nor do I take any herbs, funcional foods, and no dietary supplements besides zinc, magnesium, sodium, and potassium in my custom electrolyte mix. The only reason I take the electrolyte mix is because nothing else makes a real, sustainable, favorable cost:benefit, noticeable improvement for me.

 

For some time, I was in regular contact with brainfogboy, but he totally dropped out of contact shortly after becoming homeless in mid-2018. Unfortunately, I strongly suspect he is dead now.

Edited by Dichotohmy, 08 October 2020 - 10:56 PM.

[simonjb]

Hi Dichotohmy - breaks my heart to hear you're still dealing with all of this. I haven't seen the new thread but I'd like to throw in my 2 cents in case any of it is helpful.

Risperidone at 0.25-0.5mg daily, I have found to be significantly more effective than amisulpride for anhedonia and Adhd-type symptoms. Definitely should not be combined with stimulants AFAIK, but in terms of dopamine modulation it's the most reliable tool I've found. Dosing works best in a cyclical fashion, e.g. 4 days on, 4 days off - best pattern is unique to the individual.

Regarding the gut, solid pro and prebiotic regimens can offer some benefit for these types of symptoms, but needs to be customised and maintained indefinitely due to the unknown causative factor behind the imbalance.

I suspect some level of psychedelic therapy could be useful, both for its anti-inflammatory action and it's efficacy in essentially resetting the default mode network. This can help with pain, mood, motivation, and even physical manifestations of CNS disease. I don't know enough about this, but both Ketamine and serotonergic psychedelics (under the proper supervision) can be life changing for some patients. I have derived some of these benefits for my own autoimmune issues.

I'm saddened to learn of the disappearance of brainfogboy, I hope we're mistaken regarding his fate.

I understand that at this point it feels like you've exhausted the available options, but I urge you not to give up. I can't pretend I understand the biological origins of your symptoms, but I see a lot of crossover in my own condition, and 3 years on I'm still managing it - albeit more successfully.

If you can find one medical professional who will listen, take the time to understand, and be your advocate, I hope you'll have the opportunity to find treatment that improves your QOL.

[CharlieG]

I am so sorry to hear this. It isn't my business, but maybe you could get on SSDI disability, if you aren't already. I know you've probably tried everything possible.

I don't want to annoy you with any recommendations. But, I hope you don't mind me sharing a couple things in case you ever want to look into them. I have had a good deal

of improvement with my autoimmune disorder issues (which used to cause chronic pain and fatigue) and that's through taking Low Dose Naltrexone (LDN) as an off-label use.
It works to modulate the immune system and increase endorphins. It shuts the endorphins off for a few hours at night after you take the medicine and your body responds by creating 2 or 3x

the amount, as well as working to repair and modulate the immune system to some extent. You'd have to find an open minded person to prescribe it. For me, I found a direct-pay or concierge type of

doctor and he prescribes it for me. Besides that, the only other thing (besides totally changing my diet to gluten and dairy free) that has helped me is NMN, which I'm assuming you may know of from the forums here.

I am sorry you are dealing with this. It sounds like too much to handle. I hope you can get some help or find a real decent doctor.

Honestly, I'm noticeably worse and progressively getting worse and worse at a frog-in-boiling-water-like pace. There's some continuation of this thread in the part 2, which I linked above, but as of 2018 or so, I have lost hope and pretty much given up. I haven't seen a doctor since 2017, nor do I have any motivation to do so.

 

Some highlights I may or may not have mentioned in the part 2 thread:

 

- Positive ANA at 1:64 diultion and positive SS-A antibody test (5.0), which my GP and the rheumatologist with whom I consulted at the time were unconcerned.

- A joint-hyper-mobility-spectrum-disorder diagnosis, but no Ehlers Danlos genetic testing.

- A finding of autonomic nervous system dysfunction NOS - by that I mean my health-care team had no interest in specifying the dysfunction.

 

Some other lowlights that my meat-prison body has thrown at me since then:

 

- I burned up my savings and am broke and back living with my parents.

- Significantly worse, seemingly idiopathic post-prandial fatigue. Because of this, I actively avoid eating much before dinner time and my BMI is below 17.0 now.

- Stubborn myoclonic seizures, mostly noticeable when lying down but also sometimes occurring at any other time as well. 

- Coat-hanger pain, pre-syncope (including falls), orthostatic intolerance, polyuria, and dehydration-like symptoms, probably part and parcel with dysautonomia, all worse.

 

 

 

 

Nicotinamide Mononucleotide? No.

 

 

 

 

I agree. I would like to repeat the ANA and common anti-body tests. I want to add some other tests as well.

 

 

 

 

As a result of resignation to my fate, this is my strategy. I no longer take any prescription meds, OTC meds, nor do I take any herbs, funcional foods, and no dietary supplements besides zinc, magnesium, sodium, and potassium in my custom electrolyte mix. The only reason I take the electrolyte mix is because nothing else makes a real, sustainable, favorable cost:benefit, noticeable improvement for me.

 

For some time, I was in regular contact with brainfogboy, but he totally dropped out of contact shortly after becoming homeless in mid-2018. Unfortunately, I strongly suspect he is dead now.

 

[Thingsvarious]

To me this sounds like multiple hormone deficiency.

 

Check this out! 

https://thingsvariou...ed-2904aa48b7bd

[gintrux]

Is anyone interested in this stepholidine group synthesis? It could help with amotivation, anhedonia, apathy. In one study it increased D1, D2 receptors by 40% https://www.longecit...ia-amotivation/

[kurdishfella]

 

 

, I have started having yawn attacks that come out of nowhere and last 15-20 minutes. During an attack, I'll yawn about 3 times per minute and they're frequently big, mouth-wide-open, head back type yawns.

Be careful to not overdo yawning or cough etc by if unhealthy it can cause blood vessels to pop anywhere.   lots of vessel back of head so sleeping on it can slow blood transport to brain causin headache and if you caugh hard while laying down on head it can be bad.