13 replies to this topic

[Rozzy80]

Hello everyone! --

I have been suffering from a dysfunctional autonomic nervous system for the last 13 years.

I woke up one summer morning as a young 21 year-old feeling completely discombobulated. I couldn't cool down when it was hot (profuse sweating), I couldn't warm up when cold, I got fatigued/dizzy when standing up for long periods, I had delayed gastric emptying, etc. I just felt awful.

Thus began a year + long experience with doctor's performing multiple blood tests, CT scans, allergy tests, sinus scopes, endoscopy's, and colonoscopy's with no abnormal results.

My MD became perplexed, said "Maybe it's all in your head.", and sent me to a psychiatrist (Two, in fact) who then told me nothing was wrong psychologically and said "You should go back to your MD." My MD gave me Paxil, which gave me immediate horrible anxiety/crying fits, and then Effexor which eventually caused weight gain and sexual dysfunction but no other improvement. He also gave benzos which actually gave me anxiety (?).

I then tried to solve the issue on my own, trying a ridiculous amount of supplements over the last 13 years, as well as a multitude of diets (Low/high carb, Low/high protein, Vegan, Ray Peat, Gluten/Dairy-free, Paleo, etc). Nothing really made me feel any better, and a lot of it mostly for the worse.


I'm now at about 85% functionality (when 13 years ago I was in terrible shape...), but would love to feel "great" instead of "OK". The less is more approach seems to work ok. It'd be nice to have a nervous system that functioned optimally instead of always out of sorts.


Current diet/supplements/health related activities: Mediterranean-ish diet, Ortho-Core (half dose), Cardio-Mag, Whey Isolate, Sun exposure for Vitamin D. Weight training 2 times a week/Walking on other days. Meditation. Reading and playing multiple instruments. Mood has always been pretty good, I just get nervous public speaking (who doesn't?) or during tense situations (I work in a Trauma centre at a large hospital).

Current symptoms: Poor temperature control (too hot when hot, too cold when cold), slow stomach emptying (intestinal transit is fine), occasional insomnia, moments of brain fog/forgetting words, physiological overreaction to stressful situations even when I personally don't perceive the situation stressful, fatigue when standing too long (I work on my feet), blood pooling in hands when standing (hands bright red).

Abnormal lab results (so far): High cholesterol. Low Vitamin D. (CBC, LFT's, Lytes, TSH, 5-IHAA, DHEA, Organic Urine Acids Test, all normal). Any suggestions for further testing?



Anyone else suffer from similar symptoms/conditions and have had great success in treating it? Any help and suggestions would be much appreciated.
Please feel to ask any questions as well.




Note: As far as supplements that affect nervous system function go, I have tried: 5-HTP, L-Theanine, Phosphatidylserine, Niacinimide, Pharma-GABA, Inositol, Taurine, and Glycine. 5-HTP caused terrible nervousness/anxiety, and the others just made me feel tired/zombie-like.

[KimberCT]

What's you blood pressure look like?

[celebes]

Have you tried dibencozide, methylfolate, P5P?

[Rozzy80]

Thanks for your replies!

KimberCT - My blood pressure is pretty good. Usually between 118/70 and 130/80 depending on the time of day. Heart rate usually in the 70's to 80's at rest, though the slightest bit of exertion or effort causes a dramatic increase in heart rate. A 30 minute session of weight training causes my heart rate to become elevated for the rest of the day up in the 90's to 100's.

Celebes - I haven't tried Dibencozide. Is that a B-vitamin? I've actually tried Methylfolate and at a .5mg dosage it caused an increase in sympathetic activity.. felt like mini anxiety attacks.. my hands and feet were ice cold the whole time, and at a 1mg dosage caused intense sneezing fits/runny nose and fatigue - almost like a cold. I've tried P5P as well which also seemed to cause anxiety-type symptoms.

[celebes]

Dibencozide is aka adenosylcobalamin (B12). I've found it significantly better for peripheral nervous issues than the other forms.

Beta-alanine and B1 are also reported to help with nerve regeneration, B1 specifically in relation to dysautonomia.


Do you have an idea where your TSH is at?

Edited by celebes, 12 February 2014 - 04:40 PM.

[Rozzy80]

Interesting! I'll have to take a look a Dibencozide.

Funny enough, I was actually reading a monogram written by an MD from the Cleveland Clinic, Dr. Derrick Lonsdale, and the entire book is all studies based on the clinical effectiveness of Thiamine on dysautonomia and other CNS disorders: http://www.soilandhe...t/020173.B1.pdf

I haven't pursued this yet, as I just found it yesterday. But apparently he states the most studied form is of the allithiamine variety, primarily in the form of TTFD. (He states Benfotiamine is mainly only effective for diabetic complications.) Possibly sulbutiamine is effective as well?


My TSH is 1.1 (Seems to be conflicting reports as to what is actually considered optimal for TSH.)

Edited by Rozzy80, 12 February 2014 - 05:39 PM.

[xks201]

TSH alone doesn't mean dog crap. Free T3 is needed. Get a saliva cortisol test and an aldosterone test. I'll bet money that the problem is hormonal. a TSH isn't gonna tell you anything but that your doctor is an idiot. Please find a doctor competent in hormone replacement.

[Rozzy80]

Will do! Thanks xks201.

They're fairly stricter here in this part of Canada with the T3, T4 tests. Since all tests are paid for by the government, they have restrictions, so if the TSH is considered "normal", then they won't go through with a Free T3 or T4 test unless there's a good reason.

So i'll make sure the Dr. notifies them so that they go through with it.

I've always wondered if it was hormonal, especially with the elevated cholesterol level (usually related to thyroid).

[penisbreath]

Not sure if it's relevant, but a lot of people with CFS report start-up agitation on methyl-donors like methylfolate .. riding that out usually provides benefits in the longrun. Potassium can also remedy the anxiety.

[xks201]

Cholesterol turns into hormones. If it's high it isn't converting

[jadamgo]

Definitely get the adrenal hormones checked out. Both fasting cortisol and aldosterone. If they could be coerced into doing a norepinephrine level, that would be wonderful. If not, a tilt-table test may clear things up by clarifying exactly how your SNS is behaving under varying conditions.

[celebes]

But apparently he states the most studied form is of the allithiamine variety, primarily in the form of TTFD. (He states Benfotiamine is mainly only effective for diabetic complications.) Possibly sulbutiamine is effective as well?

My TSH is 1.1 (Seems to be conflicting reports as to what is actually considered optimal for TSH.)

TTFD is primarily used for rapid reversal of deficiency e.g. in Beri Beri or alcoholism and for chelation in autism. I have my doubts as to its superiority for chronic supplementation though. I'm waiting on some ThiamineHCl and Sulbutiamine to compare.

TSH should ideally be somewhat under 1 but yours probably isn't far enough from that to be responsible for those symptoms.

When did you have your D3 tested last? Sunlight exposure might not be efficient enough to correct the deficiency. But it's probably not enough to explain those symptoms either.

Tilt table testing and an endocrine panel are good ideas.

[socialpiranha]

have you tried withania somniferum?

Also what drugs have you tried?

[Rozzy80]

Thanks for all your replies! Everyone is so knowledgable here!

I will be going for an endocrine checkup in the next week or so. Hopefully that'll shed some more light as to what may be going on.

D3 was last tested in October. I will probably check again in May? I don't think supplementation plus sunlight exposure for 4-5 months would be enough to raise levels significantly.


I haven't tried Ashwagandha as of yet! Worthwhile for an overactive nervous system?

I really haven't tried any nootropics as of yet as this is a new area for me. And seems like you really have to be careful with a lot of them!

As far as pharmaceuticals go, just Effexor XR and Paxil. Just made everything worse threefold.