Caffeine Tolerance / Intolerance

[ramakentesh]

And you have POTS waterbaby?

When im really bad I am also like that.

[cordila]

hi ramakentesh:

my dysautonomia diagnosis was never given a distinct flavor by drs. my TTT was 106/57 pulse 76 at the beginning (supine) and within 4 minutes I was 79/41 pulse 112. At that point they put me back to save me from passing out. I've never seen any ANS specialists (ie Vandy, Cleveland Clinic, Mayo) and have been more interested in the reason for the dysautonomia as it generally doesn't appear in a vacuum. The empirical evidence now points strongly toward mitochondrial issues which I'm treating with vitamin therapy with some success. My improvement can be broken out into 2 chapters over the course of the last 4 years: Chapter 1: going off gluten/dairy/caffeine/alcohol. These dietary restrictions immediately evened out my BP and lowered my pulse. It restored my equilibrium (previously I could only walk by using a hand along the wall as guidance), and generally took me from bed-bound 24/7 to mild functionality. Chapter 2: introducing B1 transdermal cream (Authia Cream by Westlake Labs). Applied daily, this cream, over the course of 2 years, allowed me to move out of my parents house, take on full-time employment, move to Seattle (from the small city my parents live in 5 hours away), and enter into a romantic relationship. While all of those strides forward have been fantastic I am still far from 'normal'. Most recently the Mayo Mito cocktail of vitamins has all but taken away what was a daily plague of nausea. My B1 injections are going well (although I've not noticed a discernible difference) and I'm now up to 15mg 2xs/week. The goal is to slowly build up to 100mg/day, the level at which others have reported marked success.

I have suffered a tremendous setback since mid-April, which I attribute to Seattle seasonal allergies (actually the Seattle climate in general - constant low pressure systems and high humidity - both starving the air of oxygen), both new to my system and reported to be an extraordinarily vicious year. I suspect increased vasodialation (common w/histamine) is lowering my diastolic BP and (of course) increasing my pulse to 80-130 BPM resting. This is causing crippling fatigue and symptomatic episodes (irritability, racing brain/wired feeling, stomach pooling, adrenalin rushes) due to low BP. I notice the moment I return to my parents house (a more arid, albeit warmer, climate) my energy and stamina return.

I find your posts always very interesting as you seem to have a probing mind into the why's of our particular disorder pathway and use the latest research to strike forward into new theories. Keep 'em comin'!

-waterbaby

[Guest tearose]

I must take caffeine as a medicine. I do not overuse it. I have improved bp and lower hr with caffeine. I don't have cold hands or feet on it, if anything, I feel comfortably warmer.

[valliali]

I drank some "decaf" coffee today - maybe like six to ten sips, and felt AWFUL. Heart rate picked up, I started feeling really really hot and flushed, chest got really tight, dizzy, muscles started feeling strange....

My reaction to caffeine is totally bizarre and seems very extreme.

waterbaby, I can relate to your sensitivity to the weather. Low pressure and high humidity is the worst combination for my symptoms. I have never ever felt so sick as I did when I moved back to the east coast. I too felt really wired, heart out of control, panicky, and I had the worst pressure in my head, ears and neck. It was so awful I moved to California, where I tend to feel much better.