POTS info webpage useful basics

[ramakentesh]

Hi

ramakentesh,

I would like to educate my doctor on "abnormal acetylcholine-mediated sweating." He is not clued into the actions of acetylcholine and POTS. Can you cite a reference for two that I can look up at my local university's library and give to my doctor? I am hoping to push them to give a trial of Mestinon.

hi voner
there are two papers - both under 'distal sudomotor findings in postural tachycardia' via google. I'm away from my comp but can look them up later.

mestinon is one of the more helpful meds for me. Very relaxing and has done wonders for my eyes.

as far as diet goes I do better on low starch.

 

[xchocoholic]

You aren't dizzyceliac on another forum by any chance? The information being gluten ataxia?

Hi ram,

Yes but it's spelled dizzysillyak over on dinet. I'm not just talking about gluten ataxia tho. Gluten has been shown to affect a lot more organs than just the brain. It's all in theglutenfile now.

I really was hoping my OI would just vanish like my ataxia and most of my other symptoms did but no such luck. FWIW, tho I'd love to know if mine is from an autoimmune process. I have Hashimoto's. My body really goes nuts over the slightest amount of gluten.

tc ... x

 

[Sushi]

Here is a link to an informational video on POTS/Dyautonomia done by Dinet. It is not "new" but is now available on YouTube. I'm not sure if it has been linked here, but just in case not:

Sushi

 

[Allyson]

I am so glad this is been talked about, I wish people look into it too. So many are symptomatic and told they don't have it like in my case. I am glad I didn't take a no for an answer and ask for one month trial!!!

Inester you may like this useful thread too then

well. http://forums.phoenixrising.me/inde...-ehlers-danlos-syndrome-stretchy-veins.20351/

 

[taniaaust1]

Patients professing their own views aka experiences is helping change the way the medical profession is looking at diet and toxins as a possible causes of many illnesses. My goal has been to inform patients as we're the ones most likely to be interested in our health.

I found the info in "theglutenfile" on the web back in 2006 and yet our medical profession has yet to totally embrace it. I'm soooooo happy that I didn't wait for them. As are all the other patients who haven't waited for the medical profession to recognize how foods and toxins affect our bodies.

tc ... x

I wouldnt be surprised if something like celiac disease possibly causing autonomic damage and hence POTS has been missed and if that is so it makes sense diet would then help the POTS in such cases. When you say diet has helped your POTS, I believe you.

I personally believe thou that there may be many different triggers for POTS (just like most illnesses often have various triggers which may come into play to set an illness off. Take heart disease for example.. may be triggered by diet/obesity/genes/lack of exercise etc etc). If the POTS you had is triggered off by diet, it doesnt necessarily mean that others here have the same trigger. I believe my POTS has been triggered by the ME itself and whatever causes the ME and the down flow affects of having the ME.

My OI (POTS is the one of the main factors of my OI) seemed to be helped some by methylation protocol which is also helping my MTHFR polymorphism too (maybe helping the ME itself a bit). I think we all need to not only be treating our symptoms but also be on the lookout for other coexisting things coming into play too to treat as well. Its only when we start to do that, have we got any real chance of getting on top of things with this illness.

I have no doubts that once one has POTS food can affect it and hence one does need to look at diet at that point. eg coffee is bad for POTS for many of us myself included (Ive high noradrenaline so it probably triggers that more). Eatting also draws more blood into the stomach so can affect those of us who have low blood volume which is often the case in POTS (maybe some foods draw more blood into the area or for a longer time then other foods??). One part of my POTS control is looking out for mutiple triggers of my POTS and trying not to have several of those going on at once as some POTS triggering combos including eatting while having some other things going on... can send me blind (I can go blind for moments just before a POTS collapse) and collapse me completely with the POTS.

 

[ramakentesh]

LOL - i picked that up pretty quick eh? i recognised your comments from another discussion. Hope you are doing well.

Allyson you really are keen on the stretchy vein hypothesis. Unfortunately biospy of veins in many POTs patients are normal or have reduced elasticity rather than the opposite BUT - dehydroergotamine, horse chestnut and perhaps butchers broom and diosmin are all reputed to be selective venous constrictors - so you could put your theory into practise