92 replies to this topic

[serp777]

For someone who claims to have disorganized thoughts, your post is sure organized well. 

[tiadan]

My pleasure. I am more than happy to be in touch individually and with group- great idea.

Aside from the support, the more heads we have thinking about this stuff the better.

Will drop you a pm.

[AlmostEasy]

For anyone who wants to join the discussion group we'll be using Skype and it will be text chat only, you can join by adding me by username:

 

Almost.Easy2

 

(yes that is indeed a period in-between the 2 words)

 

Cheers

[AlmostEasy]

Alright, long time no see.  I've been pretty busy on other forums and with doctors running as much lab work as I can.  Some interesting things have happened.
 
First off I tried PQQ/Ubiquinol and had some good results there that then faded after a month.  A definite pattern there.  Too expensive to continue.  Am probably treating the problem upstream.
 
Then I started taking a look at hypothyroidism as a possible problem.  I've no clue what exactly set that off but I think I started looking a lot closer at my testosterone results and started searching around there.  One thing I did find is that my body temperatures are WAY low (an easily done at home diagnostic method).  Confirmed at the doctors as well.  This is a pretty big sign for either hypothyroidism or adrenal fatigue.  Both of which could be causing at least some of my problems.  SOMETHING in the metabolic axis is off (HPA).  Here are my temps:
 

 
As you can see the average is low in both situations.  Waking should be around 97.7 with very little fluctuation day to day and waking hours should be almost exactly 98.6 unless the body has been recently stimulated by activity.  This led me to get a full lab panel done, a real one.  This means fT3/rT3 ratios.  None of that TSH/T4 only crap.  The results:
 
 

• THYROGLOBULIN ANTIBODIES <1                              < or = 1 IU/mL CB
• THYROID PEROXIDASE ANTIBODIES 1                      <9 IU/mL CB
• T4, FREE 1.2                                                                   0.8-1.8 ng/dL BH
• TSH 2.16                                                                          0.40-4.50 mIU/L BH
• T3, FREE 3.6                                                                    2.3-4.2 pg/mL BH
• CORTISOL, TOTAL                                                        13.0 mcg/dL CB   ****Did not request, doctor threw in for some reason
  • Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0
  • Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17. 
•  * Please interpret above results accordingly *
• T3 REVERSE, LC/MS/MS                                              17 ng/dL EZ

 
 
All of them PERFECT, and I don't have Hashimoto's Thyroiditis.  This was a bit flabbergasting.  How could my temperatures be so low (doctors thermometer confirmed low as well) and my thyroid not be off?  "Wilson's Syndrome" suggests T3 treatment but it is only a independent theory at the moment.  Going that route would require eliminating all other factors for causation and there's one important test that I had to take home which would let me know if anything was up with my adrenals.  Also I began using Iodine to test if that could have caused my potential hypothyroidism (that I now see is non-existent).  It actually gave me a positive response, but an extremely small one.  May dose up 1/week just to keep stores full.
 
The 4 sample salivary cortisol test:
 

let it be known that I work 2nd shift so my sleep schedule is way different than the norm.  I was unable to find any articles on this so I took it upon myself to measure upon my own personal waking and 2 times during they day, and then before my own personal bed time.  I don't know if this ruins or tarnishes the results but i'm sure my circadian rhythm is way off.

• 1:30 PM (Awaken)     - 0.59 mcg/dL
• 7:00 PM                       - .05 mcg/dL (error??? that's extremely low)
• 11:16 PM                     - .26 mcg/dL
• 3:20 AM (Bed)            - .20 mc/dL

Here are the ranges provided by Quest:
 
Reference Range:

•  8-10 AM:       0.04-0.56
•  4-6 PM:         < OR = 0.15
•  10-11 PM:     < OR = 0.09

 

 
 
High in all situations and freakishly low in one.  This seems to be (from what I understand currently) the signs of early stage or even pre-stage adrenal fatigue.  Where the stress has happening but the adrenals have yet to fail.  This doesn't fit my symptom time frame very well, but who knows.  Unless my adrenals have been pre-failure for a very long time, who knows.  I've asked about it at several other forums where that's the topic of conversation so I'll have to see what they have to say.

 

Also I did have an incredible response to hydro-cortisone cream.  I was using it as a sort of self diagnostic tool.  I've only used it a few times and it does sometimes help.  I don't know enough about the substance to come to any conclusions at all but if you want to read about my response to it, it's in that link.

 

So that's taken up most of my time.  I know a crap ton about the thyroid now.  Some of the tests took quite a bit longer than I would have liked, they kept me from moving forward at the pace I want to.  So now I guess it's time to research problems associated with high levels of cortisol.

 

Also I may schedule an appointment with a neurologist and just throw everything I have at it and see what he thinks.  Probably will schedule this tomorrow.  I've got the insurance now (all tests were (are supposed to be...) 100% covered)) so why not right?

 

I've been looking a lot at "Hashimito's Encephalopathy" which led me to think about seeing the neurologist as well.

 

Any input appreciated!

 

External forum interactions (If interested):

 

http://thyroidboards...isone-response/

http://tnation.t-nat...ogadvice_needed

 

Current Regimen

Spoiler

• Brain Repair/Maintenance Stack:
• Ashwagandha KSM-66 - 500mg/day
• 5k IU D3
• LEF 2/days
• Bacopa - 450 mg/day
• Lion's Mane 4g/day
• ALCAR - 1g/day
•  
• Adrenal Repair Stack:
• Pregnenolone 25mg/day
• Milk Thistle - 150mg/day
• Collagen Types 1&3 - 6.6g/day
• Licorice Root (Non DGL) - 1-2/gday (may quit, feelin strange)

Licorice root is supposed to sustain cortisol in the blood stream for a longer than typical amount of time so with my new information on my cortisol levels I will probably stop this.  It doesn't seem to be helping or hurting really, though it does moderately affect me, it just kind of makes me feel weird.

 

Thanks!

[AlmostEasy]

Alright some interesting things are happening and I may be narrowing down the problem area.

 

From my experiences and understanding of the situation it appears that heightened cortisol may very well be either a major portion of my problem area (with cause still unknown) or it may be the problem entirely. From the research I've been doing it's been proven that prolonged levels of heightened cortisol (as in Cushing's Disease and/or Syndrome) causing brain atrophy and cognitive deficits.  This would fit my disease progression fairly well.  It started ~8 years ago and peaked around 4.5 years ago.  I'm experiencing some levels of normalcy and actually standard levels of consciousness that I've not experienced in YEARS.  Even before the problem progressed to a painfully obvious state I lost some of the more subtle and heightened levels of perception that really make a person a person.  I didn't really acknowledge this as a giant problem until the symptoms were drastic and undeniable. 

 

Cushing's Disease/Syndrome.

So to the point.  After receiving my cortisol test results I again went into research mode, I had a new lead.  The only real thing that turned up is Cushing's Syndrome/Disease.  One being a malfunction of the pituitary gland due to a pituitary adinoma, and the other being from either a disease state caused by excessive exogenous steroid (prednisone, hydrocortisone) or from an adrenal adenoma.  These cause cortisol to be stimulated for release outside of the normal feedblack loops the body has in place to maintain homeostasis.  I plan on seeing and endocrinologist very soon and I'm going to finish up my little packets that I make to bring to the doctors to inform them of information that they should probably know but always don't and hope he understands what the hell I'm talking about and hope that he/she can help me with diagnostic options.  I'm not sure if I qualify for Cushing's but due to the extreme nature of my situation an extreme disease like that is probable.  This isn't just heightened levels due to stress.  This is extreme chronic levels that caused massive disruption to normal mental and physiological functioning (again, if this is what's happening).  Also note that I do not experience the typical symtpoms that makes Cushing's obvious such as the "buffalo" humped back fat deposits, the purple striae on the skin, the high blood pressure etc.  But I certainly have diagnostic proof of heightened cortisol and an extremely positive response to cortisol reducing supplements where no other's even begin to quell my symptoms in the slightest.

 

Phosphatidylserine

So once I researched that whole situation I again turned to the supplement industry to help me quell my symptoms in the meantime.  I then found out about Phosphatidylserine.  I found the cheapest brand with the highest quality/quantity and began taking them (Swanson's Triple Strength Phosphatidylserine).  The results have been fantastic.  Things are starting to come together.  I never understood fully why Ashwagandha was my most helpful supplement.  I never could have imagined that cortisol would be an issue.  I've never once heard it causing cognition problems to the severity that I experience.  Again I can't say for certain this is the situation but a lot of things are pointing in that direction.  PS is used for treatment in Alzheimer's and dementia as well so the possibility of that method of action is always there, but I'm going with the most obvious signs here.

 

Prognosis

All in all I'd say I'm operating at about 70%.  There are still times I feel very strange and zoned out and slightly confused but it's overwhelmingly more manageable.  This is definitely the best I've felt in a long time.  It's also said the PS repairs damaged cortisol receptors (from prolonged heightened levels) so perhaps over time I'll get even better.  The experience on it is strange.  It's not so much like when you drink alcohol; 3 beers = a predictable buzz for a predictable amount of time.  It seems to come in waves.  There will be a time when I'm like wow this is working so well, then it will dip away and I'll think I need to dose again and then all the sudden some clarity returns.  I'll have to see if this pattern continues.

 

I should also note that my body temperatures have responded drastically to this.  Oddly enough this morning I hit 95.0 F (a new all time low) and then a couple hours later hit 98.8 (an all time high).  I'll keep an eye on this but before taking PS I never hit even close to 98 as consistently as I am now.  I have absolutely no understanding to explain this.  Apparently my metabolic rate is hindered when there's excessive cortisol in the system.  I've never read about that kind of mechanism in my research.

 

But there you have it.  Hopefully this IS the problem area and hopefully I can tear at the root of the problem once I see a few doctors.

 

Wish me luck!

 

Later

Edited by AlmostEasy, 12 October 2014 - 10:14 PM.

[StevesPetRat]

Wish me luck!

Good luck.
When do you take the PS? Evenings? It's something I've wanted to try for a year now... but don't know if I'm already dropping back over to the low cortisol side of things or what.

[AOLministrator]

@OP:

Can you please write your original post again, but try more to gear the text towards speaking to god than towards speaking to the average person. Thanks.

Edited by Aolministrator, 13 October 2014 - 01:27 AM.

[AlmostEasy]

 

Wish me luck!

Good luck.
When do you take the PS? Evenings? It's something I've wanted to try for a year now... but don't know if I'm already dropping back over to the low cortisol side of things or what.

 

I take it in the morning and have been taking it around mid day as well.  I'm not sure if I'll continue that since it's pretty expensive to but we'll see.  I haven't tried just taking it at night before bed or something so I'm not sure what to tell you.  I think some people are really calmed by it so if that affects your life at all you may want to take it then.

 

If you try it and the experience is negative then you can probably assume you're on the low side.  Many people take it for it's nootropic effects, people who don't have cortisol problems and they seem to be fine in that area so it's worth a shot for anyone imo.

 

Can you please write your post again, but try more to gear the text towards speaking to god than towards speaking to the average person. Thanks.

Honestly I'm not sure if this is meant to be an insult or what it even means but I'm assuming it was meant to be.

 

I'm not writing to the average person, I'm writing to scientifically minded people who can help me with a complex and uncommon problem.  If the scientific method and complexity offends you you might be browsing the wrong site.

 

If that's not what you meant I apologize but honestly I don't know what you're saying.  Send me a PM or something though I don't want to fill this thread with pointless banter.

[AOLministrator]

I kind of probably have your issue but not 100% exactly, that is why I wanted to know more. If you lack the self-awareness over your communication abilities then so be it. I am not sieving all that BS you wrote for the mob. Could give you tips if interested though.

[Flex]

@ AlmostEasy

 

Dont forget to ask Your Endocrinogolist about the possibly non measurable cortisol.

Because, as far as I know, the receptors and/or the degradation enzyme of cortisol ( 11beta hydroxylase) could be malfunctioned

and You dont need a high cortisol level to get any e.g. memory impairments & etc. since its within the brain.

 

Furthermore, cortisol is the one Neurotransmitter which induces the negative feedback loop. So it restricts the release.

 

Its all half-knowledge therefore its actually better to get it diagnosed by a Doc.

 

Nevertheless, here are some links if You are interrested:

http://www.longecity...is-dysfunction/

http://www.longecity...altering-stuff/

 

 

 

[AlmostEasy]

@ AlmostEasy

 

Dont forget to ask Your Endocrinogolist about the possibly non measurable cortisol.

Because, as far as I know, the receptors and/or the degradation enzyme of cortisol ( 11beta hydroxylase) could be malfunctioned

and You dont need a high cortisol level to get any e.g. memory impairments & etc. since its within the brain.

 

Furthermore, cortisol is the one Neurotransmitter which induces the negative feedback loop. So it restricts the release.

 

Its all half-knowledge therefore its actually better to get it diagnosed by a Doc.

 

Nevertheless, here are some links if You are interrested:

http://www.longecity...is-dysfunction/

http://www.longecity...altering-stuff/

Alright cool thanks man, those are some interesting articles for sure.

 

Small update while I'm at it.  Feeling a bit in a slump the last couple of days.  I may be taking too much PS, I think I am.  My brain feels a bit dried out when taking it twice daily.  I may get a smaller dose and break it up over the course of the day instead of taking 300mg in the morning.

 

It's hard to say though it is so unpredictable.  A couple of times I went through some strong emotional experiences that I haven't had in a while.  They weren't inherently pleasant but it was impressive to actually experience them in that way.  Reminded me of how easy functioning normal is.

 

I'm feeling a bit burnt out from all this overall.  I think trying to figure it out myself is just becoming too much.  As much as I have found that doctors have been less then useless it feels nice knowing I'm going to be seeing some specialists soon, I just really hope they actually care about what they're doing.  Most of my doctors are just brainwashed and are stuck in the anti-depressant rut.  I display huge swaths of information indicating something completely unrelated to depression or ADD - doctor thinks about it... "hmmmm, you know it could be a problem with neurotransmitter levels in the brain, maybe you should try another anti-depressant.  Or it may be that you have ADD, take home this sheet and fax it in when completed". Oh your body temperature hits as low as 95.5 F?  We don't usually worry about that.  Ohhhh, ok, thanks.  Ashwagandha helped you more than any A.D. ever did?  Ohhh, that's cute.  Blah.

 

Anyways, I think overdoing the PS has been counterproductive so I'll lay off a bit and see if I can find my happy medium again .  I'll hopefully be seeing an endocrinologist and a neurologist next week as well.  I'll update if anything comes of that.

 

Later!

[AOLministrator]

I see you have never had any experience with the health care system ...

[AlmostEasy]

Hallo frendz!  It is me again!

 

Short update for the lulz.  So I've been on Zyprexa 2.5 mg for about a month now and that's going pretty well.  It's a decent band aid.  I'll be starting 5 mg tonight.  

 

I've had to cancel my Endo appt because they scheduled it so far out and I'm moving in a little bit so logistically it's just not going to work.  Though in the meantime I've found a new local doctor and I couldn't be happier.  My advice to anyone struggling with their doctor... GET RID OF THEM.  ASAP.  Instead of talking down to me like I'm a little child playing doctor on the internet this new guy is right up there with me in my assumptions.  He's very keen on treating the thyroid and low T before anything else.  He actually suggested it based on my numbers before I could even plead my case.  I'm very excited for this.

 

So the plan for now is to treat the thyroid with Amour as I am a classic case for Wilson's Temperature Syndrome.  Some believe this isn't a real thing but there are so many anecdotal reports of phenomenal recovery that it's impossible to ignore.  My body temperatures are very abnormal.  Once this is done and I've come to a conclusion about it I'll test my T levels and see where they are at now that my metabolism is functioning properly.  if the levels are still low I'll begin TRT.  Even if my problems don't stem from T directly, optimizing my health is a large priority of mine and I don't see how it can hurt.  I've always assumed intuitively that my levels have been off based on some of my symptoms. 

 

So that's the plan, treat the HPA & HPG axis.  This has been lingering in my mind for a very long time and it's going to be very insightful to me to finally see what happens when I'm treated for these problems.  Very excite!!

 

Forgot to mention.  The phosphatidylserine isn't really working for me anymore.  It seems to actually cause mental disturbances rather than alleviate them.  Perhaps this is due to it's ability to reset cortisol receptors, maybe it's done its thing.  Whatever the case, this is another situation in which the supplement worked and made me think "it's the one" and confirm a theory I have only to have it then stop working entirely and leave me very confused.  Perhaps this is me treating the problem downstream and it only affecting secondarily interrupted chemical processes and not the fundamental ones.  I don't know.

 

Later!

Edited by AlmostEasy, 02 December 2014 - 04:32 AM.

[Flex]

Glad to hear.

Knock on wood!

[AlmostEasy]

Hello,

 

Well I've begun to realize that this is something far beyond supplements or medications.  My state is progressively getting worse and the supplements just aren't doing it anymore.  I don't have a fucking clue as to what is going on.

 

I'm about 6 weeks into T.R.T. and my test levels are much better (Total T in the 700s) than they were and I don't feel any different.  I in fact feel worse.  My free T is moderately above the high range so maybe I'll tone that down, I don't know.  I don't have any competent doctors on this subject that could intelligently advise me.  I'm told it can take 3+ months for me to actually feel anything and I'm hoping so bad that it will help me.  So another 6 weeks to determine how much this is really affecting me.

 

I got a Lyme Western Blot from Quest that all turned out negative, though I was told to expect that as the Quest Lyme panels are awful and give a lot of false negatives.  If I had about $200 I could do the IGeneX test and put that to rest once and for all.  Maybe I'll do that eventually.

 

I was approved to get an MRI with contrast and it's in the pre-authorization stage so that will be huge for me I think.  It's impossible that that wont pick something up for me, this really feels like straight up brain damage.

 

I also talked to a new doctor at my new location and she was very interested in my situation and actually listened to me.  She's very enthusiastic about helping me figure this out, she says she enjoys a challenge like this.  That made me feel a bit odd but we both have similar goals in this. She wrote some labs up for some allergy tests but my insurance doesn't cover it, so I wont be getting those.  She did allow me a prescription of Ritalin which I'm using sparingly.  I did get a script for Adderall and it gave me the same kind of depression that Vyvanse did so we'll see how Ritalin stacks up.  Felt some real relief the first day @ 20mg.  Day 2 @ 10 mg and I'm feeling pretty spaced out at the end of the day.

 

I'm just so defeated at the moment.  I see everyone just walking around nonchalantly having pleasant conversation enjoying their day without worry, just effortlessly being themselves.  I can't relate to that at all.  I live in a mental hell.  It's so fucked up that I have to experience this, it is so inhumane.  I don't get a moment of rest from this.  People that have stressful lives at least get to come home and unwind and shut their brains off for a bit.  Every moment of my existence is suffering and confusion.  The fact that I have no idea what's going on, no clear sign of cause, and the doctors are clueless just compounds this problem so much more.  Sometimes it makes me wonder if it's even real, like it's just in my head.  But no, it's very real, and very terrifying.  I don't know what this is going to progress into.  Nobody is helping me.  I go to the doctor and they're sympathetic then I just leave and am left on my own again, off to suffer some more and Google research until I can't stand it anymore.  If I could just have a clear head for like 24 hours I could restructure so many things causing me mental anguish.  My mind keeps trying to behave like nothing is wrong and it's so difficult.  I think I just take myself too seriously for some reason, like I HAVE to be that normal successful person that I was going to be.  Like it is NOT OK to have gotten sick.  I have so many passions that I can't follow anymore, so many things I wanted to do and accomplish.  I never knew suffering like this could exist. I can't even imagine what people going through worse feel like.  I really think my ego exacerbates it quite a bit, I'm trying so hard to hide this from the world and just plow through.  I dunno.

 

I'm sorry guys I'm not usually one to complain in this manner but it's just so bad.  It's really hard to deal with.  I just needed to vent somewhere where they might understand my situation.  I can't talk with anyone in my real life about this.  If I could just find a god damned diagnosis I could maybe tell people what's going on and they'd understand.

 

So I suppose I just wanted to update for anyone who was curious, and to log my current status.  Usually if I typed something like this I'd delete it after I got my feelings out but I think I'm going to keep it and see what you guys think.  I don't allow myself to be upset about this enough, I don't let myself complain or appear weak or vulnerable.  I thought that was a strength but in this case I think it's holding me back.  I think talking to a counselor might do me some good.

 

Current Regimen:

Spoiler

Main Stack:

- Fish Oil 1g High EPA

- Ashwagandha KSM-66 500mg

- Vitamin D3 5k IU

- Vitamin B Complex Tincture (Now brand)

 

T.R.T.

- 100 mg/week Testosterone Cypionate split into 2 doses/week

- 750 IU HCG / week split into 3 doses

- .5 mg Anastrazole / week split into 2 doses

 

Experimenting With:

- Magnesium Glycinate 200mg/dose

- Phosphatidyl Serine 300mg/dose

[StevesPetRat]

Hi again. Try thiamine. A lot (up to 1800 mg in divided doses). Try allithiamine. A lot (up to 600 mg in divided doses). Honestly, I give it a 50/50 shot of helping significantly. Effects may be subtle at first, but I had almost immediate major improvement in autonomic symptoms. Riboflavin (a little, your B complex probably has enough) and magnesium (a lot - I now take 1200 mg combined between gycinate and citrate daily, along with epson salt baths almost every day) are necessary cofactors. There is a lot more to my personal stack, but something seems like it's very distinctly metabolic in your case; dunno, can't quite put my finger on it. At least try the first one, at worst you're out nine bucks.

 

And hang in there. Believe it or not, some of us know almost exactly how you feel.

[AlmostEasy]

Hi again. Try thiamine. A lot (up to 1800 mg in divided doses). Try allithiamine. A lot (up to 600 mg in divided doses). Honestly, I give it a 50/50 shot of helping significantly. Effects may be subtle at first, but I had almost immediate major improvement in autonomic symptoms. Riboflavin (a little, your B complex probably has enough) and magnesium (a lot - I now take 1200 mg combined between gycinate and citrate daily, along with epson salt baths almost every day) are necessary cofactors. There is a lot more to my personal stack, but something seems like it's very distinctly metabolic in your case; dunno, can't quite put my finger on it. At least try the first one, at worst you're out nine bucks.

 

And hang in there. Believe it or not, some of us know almost exactly how you feel.

 

Hey thanks for the reply.

 

So are you alluding to Wernicke's Encephalopathy when talking about thiamine?  I don't think I really fit the bill for that but I'll still give thiamine a shot, not much to lose on that one.

 

For the thiamine would you suggest ramping up to that dosage over a long time or just over a couple of days?  Also does the form matter?  I'm seeing some Thiamine HCL on Amazon for a good price.

 

For the "allithiamine" is this what you're referring to as well?

 

I think this new magnesium is helping with my sleep but I haven't experimented with higher doses, maybe I'll ramp it up tonight.  Thank you very much for the reply though.  I'm sort of over the phase of having much hope with supplements but if it's cheap it's worth a shot.

[Flex]

Whats about Zyprexa, are You still taking it ?

Asking otherway arround, could Zyprexa be the reason for feeling bad ?

[Dichotohmy]

OP, I share pretty much all of the chronic psychological symptoms as you, as well as a significant cognitive decline over the last 15 years.

 

I also have a slew of physical ailments like joint and muscle inflammation, orthostatic intolerance, exercise intolerance, and dysautonomic wierdness (large BP/HR swings, low body temperature, etc). Do you have any other clearly defined physical symptoms besides the low body temperature? In my case, basal temperature is a consistent 95.8-96.6 and it swings throughout the day from 96.0-97.7, but I rarely notice a difference in global symptoms when my body temperature does rise. Wilson's Temperature Syndrome is an extremly fringe and discredited theory (moreso than adrenal fatigue), but IMO, the importance of optimal thyroid hormones for one's own physiology, which WTS espouses, is right on the money. What I mean by that is that it's foolish to assume that good lab values equal an optimum level of thyroid hormones. There's the simple idea that you may just feel better with your thyroid hormones way above reference values. There's also the possibility of thyroid resistance, right down to the individual cells of your body, which is an issue of either too high or too low cortisol. You might already know these things, but it bears mentioning. 

 

I'm also curious about a few things:

 

Do you also have cold intolerance in addition to your low temperatures? In my case, my cold tolerance has completely disapeared. I need to wear multiple layers of clothes in temperatures below 75. Winters for me, even in a warm/mild part of California, completely suck. On the other hand, I am much more comfortable in temperatures of 85-110 degrees, like some sort of smooth-skinned reptile. I know that heat intolerance is also a thing in the thing of temperature disorders, but it sure isn't for me.

 

Have you ever had a sleep study done? Do you ever have days where your sleep quality is better of more refreshing? In my case, I have maybe 10% of days where my sleep is inexplicably refreshing and my nexus of symptoms improve significantly. I'd even say that sleep quality is an essential trigger for me, yet my sleep issues are seemingly ideopathic and a slew of sleep treatments I've tried have no consistent effect.

[AlmostEasy]

@Flex good eye, I forgot to mention I'm still on 1.25mg Zyprexa. I tried to go off totally but it was just too much atm. That stuff really sinks its claws in deep. 1 day off and I'm quite depressed. I might setup an extremely slow weening process. Just taking it now to stay stable for a bit.

@Dichotomy my BP and HR are very very good and stable. 100/60 and like 62 pulse. I do have cold intolerance. I just can't handle it. I have a ton of Cytomel to experiment with should I want to humor that theory some more.

The heat doesn't bother me quite as much though it still does some. It makes me want to move when it's really cold out, though many feel the same in my region.

I do wonder about my sleep. I checked out sleep studies and they looked like a lot of work so I put that on the backburner. I absolutely feel my best my a significant margin when I have adequate sleep. I have like intense fear of days when I know I'm going to be sleep deprived, it sucks. Magnesium seems to be helping that some but nothing conclusive yet. Just started testing that.

Would you like to chat some on Skype? It's helped me quite a bit to chat with some people with similar problems. Up to you, my handle is almost.easy2.
I'm on mobile atm I'll add more as I think of it when I'm back at my pc. Thanks for the interest in my situation, much appreciated guys

[StevesPetRat]

So are you alluding to Wernicke's Encephalopathy when talking about thiamine?  I don't think I really fit the bill for that but I'll still give thiamine a shot, not much to lose on that one.

No, apparently thiamine deficiency really screws up your autonomic nervous system, even without full bore WE / beriberi symptoms. You can search for "Derrick Lonsdale MD thiamine". He has a little hint, just a smidgen really, of the "True Believer" about him -- i.e. the guy who thinks he found the cause of all disease -- but on the other hand he has had really good results.

For the thiamine would you suggest ramping up to that dosage over a long time or just over a couple of days?  Also does the form matter?  I'm seeing some Thiamine HCL on Amazon for a good price.

You can ramp it up pretty fast, like by 100 - 200 mg / day. If you feel weird, try increasing magnesium dosage. Thiamine HCl should be as good as mononitrate; I eat the bulk powder so I prefer something less tooth-eroding.

For the "allithiamine" is this what you're referring to as well?

Benfotiamine isn't a true allithiamine and doesn't readily cross the BBB (though it still is a useful supplement for e.g. peripheral neuropathy). Look for TTFD. There is a cream but it stinks (TTFD is a synthetic form of the natural allithiamine from garlic). The brand I linked is pretty much the only pill form I found available in the US.

I think this new magnesium is helping with my sleep but I haven't experimented with higher doses, maybe I'll ramp it up tonight.  Thank you very much for the reply though.  I'm sort of over the phase of having much hope with supplements but if it's cheap it's worth a shot.

Well, it pretty much fixed my POTS, something that I had given up as hopeless, and I get hot again, I can take the cold better, etc. I wasn't looking for any of these effects, and anyway POTS is really hard to placebo out of existence...

[Flex]

@Dicotohmy

 

Body temparature could be related to monoamines, (endo)cannabinoids, and perhaps other neurotransmitters.

[AlmostEasy]

 

So are you alluding to Wernicke's Encephalopathy when talking about thiamine?  I don't think I really fit the bill for that but I'll still give thiamine a shot, not much to lose on that one.

No, apparently thiamine deficiency really screws up your autonomic nervous system, even without full bore WE / beriberi symptoms. You can search for "Derrick Lonsdale MD thiamine". He has a little hint, just a smidgen really, of the "True Believer" about him -- i.e. the guy who thinks he found the cause of all disease -- but on the other hand he has had really good results.

For the thiamine would you suggest ramping up to that dosage over a long time or just over a couple of days?  Also does the form matter?  I'm seeing some Thiamine HCL on Amazon for a good price.

You can ramp it up pretty fast, like by 100 - 200 mg / day. If you feel weird, try increasing magnesium dosage. Thiamine HCl should be as good as mononitrate; I eat the bulk powder so I prefer something less tooth-eroding.

For the "allithiamine" is this what you're referring to as well?

Benfotiamine isn't a true allithiamine and doesn't readily cross the BBB (though it still is a useful supplement for e.g. peripheral neuropathy). Look for TTFD. There is a cream but it stinks (TTFD is a synthetic form of the natural allithiamine from garlic). The brand I linked is pretty much the only pill form I found available in the US.

I think this new magnesium is helping with my sleep but I haven't experimented with higher doses, maybe I'll ramp it up tonight.  Thank you very much for the reply though.  I'm sort of over the phase of having much hope with supplements but if it's cheap it's worth a shot.

Well, it pretty much fixed my POTS, something that I had given up as hopeless, and I get hot again, I can take the cold better, etc. I wasn't looking for any of these effects, and anyway POTS is really hard to placebo out of existence...

 

 

Alright thanks for the responses.  I'll be starting that Tuesday so I'll report with updates.

 

Ritalin is going fairly well.  It really really helps me with social situations, which is where the pain from this rears its head the most.  I can flow and and have the desire to communicate with people and express myself.  That makes things so much smoother.  Whatever is going on with me is definitely affecting my dopamine system in a very negative way.  Like this clearly is my issue.  I don't get even close to 100% functioning again but at times it does go up to like 25%-35% maybe which is drastic for me.  Listening to music while on it is overwhelmingly pleasurable again.  My reward system is just broken otherwise.  I used to be infatuated with everything music and instruments and now when I listen or play (while not on Ritalin or Adderall or something affecting my dopamine levels) it's just empty.

 

I've taken it 5 days in a row in varying doses, only 5 mg today.  I'm really looking to min/max this as much as I can, not sure how many days I should take off a week.  It's hard because of how afraid I am to feel that bad again.  I might try using it all the time but on my slow days use only 5 mg, and then about 15 mg or so on my busy or social days.  Let me know if you guys think that would be wise taking my situation into account.  My sense of unwavering hopelessness lessens substantially even with just 5 mg.  I'm taking magnesium with this too.  With Adderall I experienced crushing depression with consecutive use but something about methylphenidate is a bit different, I'm pretty ok the days after taking it.  No intense depression like with amphetamines.

 

I did order that benfotiamine too so if that and the standard thiamine HCL have solid effects I'll look into that allithiamine a bit more. 

[Flex]

Personally: I would avoid Amphetamines. Some arent sensitive to it but according to some threads, others seems to develop lasting cognitive + emotional impairments.

Based on this, if You dont experience that much after a while, then better avoid it. No need to risk something.

Edited by Flex, 02 February 2015 - 05:44 PM.

[nowayout]

To me the symptoms you describe in your original post seem to fit the profile of garden-variety depression, with perhaps some OCD and anxiety mixed in, which is common in depression.  You certainly don't need schizophrenia or dementia to present with those symptoms.  Amphetamines can definitely be very helpful in the short term for depression, so the fact that you responded to them is unsurprising if you have depression.  They typically don't work so well in the long term for depression (or for anything else, for that matter). 

 

Nothing to offer except to mention than when you are taking so many different substances at the same time, it becomes almost impossible to determine what helps and what hurts.  I've been there.  You may even discard something that helps because you happened to take it concurrently with something else that cancelled out its helpful effect. 

 

Good luck!

Edited by nowayout, 02 February 2015 - 09:38 PM.

[serp777]

What about the basic stuff:

 

Do you have a good diet? How many fruits and vegetables do you eat relative to foods high in sugar?

 

Do you drink a lot of soda, particularly those with a lot of coloring additives? Do you eat a lot of packaged food or prepared meals? Do you eat stuff with a lot of trans fat?

 

Do you exercise enough?

 

Do you smoke or drink a lot?

 

Did you drink a lot in college? Do you take any recreational drugs or did you take recreational drugs for a long period of time/ high dosage?

 

A lot of the problems people have can be attributed to these things alone. People who drink a lot in college always wonder why they have cognitive decline now that they're 30 for instance

 

Also:

 

"

- Ashwagandha KSM-66 500mg

- Vitamin D3 5k IU

- Vitamin B Complex Tincture (Now brand)"

 

Have you been known to be deficient in vitamin d? And almost no one in America needs more B vitamins. There's no evidence that excessive b vitamins are necessary or beneficial. Ashwagandha looks somewhat promising though.

Edited by serp777, 06 February 2015 - 10:56 AM.

[StevesPetRat]

There's no evidence that excessive b vitamins are necessary or beneficial.

You really ought to check out the NR threads and see if you still feel that way.

[serp777]

 

There's no evidence that excessive b vitamins are necessary or beneficial.

You really ought to check out the NR threads and see if you still feel that way.

 

 

Well im looking at the studies which say that B vitamin supplementation is really only useful in case of deficiency. In America deficiency is not usually a problem because we tend to eat a lot of meat. There's even some evidence of a possible positive correlation between high b vitamin intake and some kinds of cancers.

 

http://www.hsph.harv...urce/vitamin-b/

 

I can provide more if you'd like too. Perhaps if you have some studies you can link me, I could be convinced. But some anecdotal evidence from some thread probably wont be convincing.

[StevesPetRat]

OK, I will take the niacin use that's so well established, even allopathic doctors routinely use it.
http://m.circ.ahajou...0/23/3512.short
http://www.sciencedi...002914989907546
http://www.sciencedi...95528630200284X
But sure, you can be like the neurologist I saw who told me he "didn't believe in high dose vitamin therapy," as though it were a matter of faith and not almost 50 years of clinical evidence.

I agree that they aren't beneficial in everyone; if that was your intent, I apologize for the misunderstanding.

[AlmostEasy]

Personally: I would avoid Amphetamines. Some arent sensitive to it but according to some threads, others seems to develop lasting cognitive + emotional impairments.

Based on this, if You dont experience that much after a while, then better avoid it. No need to risk something.

Ritalin isn't actually an amphetamine.  The amphetamines purge dopamine while ritalin inhibits it's uptake.  I've yet to look to do any serious research but from the basics it looks like Ritalin is well tolerated in the long term, being one of the oldest medications known (50+ years).  I can't claim that with absolute certainty but it looks promising.

 

It's helping so much too and I need to be at the top of my game that I'm at a point where I have to take it, I just can't afford to not be able to function.  I'll explain more in the next replies.

 

To me the symptoms you describe in your original post seem to fit the profile of garden-variety depression, with perhaps some OCD and anxiety mixed in, which is common in depression.  You certainly don't need schizophrenia or dementia to present with those symptoms.  Amphetamines can definitely be very helpful in the short term for depression, so the fact that you responded to them is unsurprising if you have depression.  They typically don't work so well in the long term for depression (or for anything else, for that matter). 

 

Nothing to offer except to mention than when you are taking so many different substances at the same time, it becomes almost impossible to determine what helps and what hurts.  I've been there.  You may even discard something that helps because you happened to take it concurrently with something else that cancelled out its helpful effect. 

 

Good luck!

This is just not the case, I'm being very genuine here.  I take Ritalin and my brain begins to function properly.  I can speak and my mind isn't brain dead.  My mood is almost identical on and off of it, my brain just actual functions more properly on it.

 

What about the basic stuff:

 

Do you have a good diet? How many fruits and vegetables do you eat relative to foods high in sugar?

 

Do you drink a lot of soda, particularly those with a lot of coloring additives? Do you eat a lot of packaged food or prepared meals? Do you eat stuff with a lot of trans fat?

 

Do you exercise enough?

 

Do you smoke or drink a lot?

 

Did you drink a lot in college? Do you take any recreational drugs or did you take recreational drugs for a long period of time/ high dosage?

 

A lot of the problems people have can be attributed to these things alone. People who drink a lot in college always wonder why they have cognitive decline now that they're 30 for instance

 

Also:

 

"

- Ashwagandha KSM-66 500mg

- Vitamin D3 5k IU

- Vitamin B Complex Tincture (Now brand)"

 

Have you been known to be deficient in vitamin d? And almost no one in America needs more B vitamins. There's no evidence that excessive b vitamins are necessary or beneficial. Ashwagandha looks somewhat promising though.

That's all covered in my original post, but yeah my diet / exercise regimen very good compared to the standard American.  80/20 split on healthy eating, work out 3 times a week.  I believe I'm going to add in cardio 3x / week too if I can help it.

 

Now onto my latest ideas.

 

Ritalin has been so helpful and so well tolerated that in my mind it is absolutely diagnostic in nature.  I can't even explain how crazy it is that if I pop 10-15mg Ritalin I phase over to another dimension where things actually fucking making sense.  I can think better, I can speak.  I'm still nowhere near cured but it's too therapeutic to ignore.  I strongly believe there is a dopamine problem in my brain.  My muscle rigidity also decreased on it.

 

This leads me to a new theory, young onset Parkinson's.  Oh boy, dropping mad hypothesis'.  Since I have such a strong response to Ritalin it made me look at what kind of disorders Ritalin can be used for asides from ADD and Parkinson's came up.  I dismissed this idea in the past because it's so associated in the publics mind with movement problems but this made me press further.  I looked at young onset PD and noticed a lot of similarities.  The cognitive problems are there like they've always been, but ones like loss of sense of smell and muscle rigidity really stick out.  Also PDs individuals respond positively to guess what?  Ashwagandha and Ubiquinol/PQQ and Phosphatidylserine and Lion's Mane (all my most positive responding supplements).  This may mean nothing as there's so much cross-over with these diseases and supplements but it's a road to go down.

 

So what does this mean for me?  I'm not taking this too seriously but it warrants further involvement so it's back to self diagnosis mode while I wait on my incredibly incompetent doctors office to get my MRI ordered, and also while I wait until April for my neurologist appointment. 

 

L-Dopa prescription is used as a diagnostic tool for PD if there is a strong, positive response.  With this in mind I'm going to check out some Mucuna Pruriens to see if I get anything from it.  I may also do some more research on Selegiline and see if my doctor would be into testing that.

 

I'd also like to do some serious research in how long I can keep up this Ritalin use and if it'd be smart or not (taking my situation into consideration) to ramp the dose up.  I'm keeping it at the lowest dose (10mg) but it'd be incredible if I could somehow safely amp it up a little bit, if that's possible.  If anyone has experience with long term Ritalin use please chime in.  I'm also on instant release too, considering doing XR.

 

Cheers