5 Questions For People With Pots (please Help)

[avidita]

Thanks Intuit!

That was helpful! I absolutely agree with you that managing stress is very important along with building up fitness. I am taking some of things you said to mean that you have managed to improve your symptoms. That makes me optimistic!

[ramakentesh]

Intuit I found your post interesting.

Gaba

Ofcourse there is no scientific evidence that gaba deficiencies play a role in POTS or dysautonomia in general, and for every patients Ive spoken to that responds to Gaba meds (I being one of them - alcohol works for me) there are two that dont just as drastically. kava for me works a treat, but a guy I met went down hill fast on it.

In many forms of POTS there doesnt appear to be baseline sympathetic activation - it appears that in some forms there is orthostatic parasympathetic withdrawal and orthostatic norepinephrine potentiation - in other words there is baseline normal values but orthostatic hyperactivity. A gaba deficiency would be expected to result in constant sympathetic activiation through unapposed sympathetic stimulation.

However, there are patients like me that show signs of sympathetic activation at all times that are only exacerbated by standing and static postures.

Interesting theory and one ive thought about at length but still iffy. In most cases the problem seems to occur on standing the balance only becomes messed up then.

So you cant really talk definitively about this being a proven mechanism of dysautonomia.

Breathing and blood sugar fluctuations

Symptom severity is the fundamental factor that will effect a POTS patient's ability to complete a physically demanding task. My symptoms fluctuate - when im in a relapse all the good breathing and blood sugar control in the world is not going to assist me to complete some sort of physically demanding activity - and this can be a week after running 3 miles without a problem. My fitness was fine, but after a long distance flight I came down with a relapse of POTS.

Blood sugar can and does play a role in POTS - but not for the reasons most people think. Cerebral hypoxia's main significant effect is that it stops glucose from being metabolised in the cerebral mitochondria. This results in elevated lactate levels. Impaired cerebral glucose metabolism tricks the brain into thinking that your serum blood sugar levels are low when infact they are normal = the result being that orthostatically you may experience symptoms of low blood sugar when infact your blood sugar is normal.

Ofcourse there are some that do have genuine reactive hypoglycemia but these people cannot be generalised as representing the whole dysautonomia patient group.

Hypoxia

Cerebral and thoratic hypoxia is the cause of ALL or 90% of the symptoms of dysautonomia.

Yes. Not only do stressful events make the symptoms worse, but the frequency of these events, over the course of months to years, has a direct role in sudden escalation of symptoms and their severity.

How you cope with acute and chronic stress is very important to managing dysautonomic conditions.

You can never be 'cured', but you can work towards extended remission.

Quite possibly true, but based on what medical evidence? I thought the same until I noticed that my four major relapses have all occured within the space of a week of ling haul flight. Again, this is based on my own observations and not any genuine medical evidence so I dont talk about it definitively.

POTS seems to be one of those things where you think you have a hold on it and then it rears its head again.

In my situation stress usually makes my symptoms worse, but not always at the time of the stress but perhaps later on.

original post

I guess at the end of the day in this case, for me there was no doubt I had dysautonomia and POTS - I was so ill I knew it was much more than just anxiety or being in my head. It was like night and day. I woke up one morning and I was VERY ill. That being said, I also experienced significant cognitive problems and felt on edge 24-7 for a while.

Ive learned to exercise my way out of a POTS hole and most of the time im 90% functional. Its not all doom and gloom and I think there will be significant treatment advances in the not too distant future.