static/changing nature of POTS confusing

[ramakentesh]

When i first got POTS I found that certain things I could not tolerate at all - alcohol and caffiene were no-nos and licorice tea always created a migraine in me.

Ive found the changing nature of POTS the most confusing - the changing nature of symptoms (periods of dizziness, periods of food intolerances that come and go and conform to no apparent pattern, periods of medicine intolerances that also come and go without any pattern)

Now I can drink licorice tea without any problem, can eat any food without an increase in symptoms and a beer actually helps (i dont know if this is because of its beta-depressing effects or its vasodilation which used to be bad for me).

Bet blockers used to help me greatly, whereas now they just make me feel more out-of-it. Licorice has been the only thing thats been keeping me going - and i used to have a bad reaction to it.

The strangest part of POTS for me is that I only get it when im back in my home city -and it always goes away when im overseas or out of town. Ive tried to find a trigger that is perhaps stressing my body and turning POTS on so to speak and I still cant find one.

But the changing nature of POTS leads me to think that perhaps it is an autoimmune disease or atleast a result of the body under stress from allergies or intolerances.

The fact that people can be on a medication that helps and then after a while it stops helping as the nature of their symptoms change is also confusing. If there was one underlying cause of POTS like something like Thyroid nodules or something, surely by targetting that one thing it would improve, whereas with POTS it seems that when you combat one facet of the disease, another one comes along to make it difficult.

I wonder if the recent finding in the UK of cellular changes post flu for Chronic Fatigue patients means that post-illness pots is in the same boat?

Im just rambling a bit because im frustrated that I have come home to all my friends and family and feel sick when i was overseas for two and a half months with barely any symptoms.

I wonder what stresses long-term pots has on people's bodies?

DO people actually ever get permanently better??

[Guest Finrussak]

I have spent a lot of time thinking about this as well...,and researching itno the wee hours...the finality I have come up with for now is that this is NOT a discrete illness like say Diabetes...its a "syndrome" of many casues and sx and therefore tx. Even if you have a population of patients who seem to be the same...lets say POTS due to Nervous sytem damage due to inflammation and a tick infection ( just because I am so darn personally familiar with it- ) and you track sx and what works...each and every chart would look differnt...which is why it frustrates "cookbook" docs so much as well as those of us suffering...Plus its a nervous sytem thing that affects and is effected by the neurochemicals whose very nature is ethereal...they are very tiny amounts that cause widespread (in some cases) results; very short acting, and very variable in how they are operating. Some people have high chemical levels and are fine, others feel funny with small variations. Which leads to the last problem,.,,how we react to all of these variables is in itself another variable!!!...By necessity so that studies can be done and comparative results can be analyzed many sx and tx are lumped under the catch-all category of dysautonomia...even a smaller category-POTS...but it may be that in the future we may be finally separated out into many types with our own sx and tx. Similar to EDS...there are many types each with their own causes, results and tx. Even with "simpler" discrete diseases that have a source its hard and not an exact science...take Gaucher disease...a faulty processeing of glucolipids...its inherited...gene defect...and mostly carried by East European Jews...but even with the defect...it can present at varuious ages and with various severities of sx...therefore some tx vary. BUT the unifying factor is that most can be helped by an enzyme replacement thats missing due to the gene defect. Some have the enzyme but produce too little,,, Just an example of even a simply defined disease with many variables!

So far Ive heard of "remissions" and partial recoveries...with varying degrees of returning to "normal"...Dr. Grubb speaks of this as lifelong with periods of better times and worse times...I personally have never heard of a complete cure...yet.

The frustration of figuring out the why and how can often be helped by a journal...even brief notations on a calendar or planner...what you did/whwre and sx...and maybe a pattern will emerge...either seasonal...or weather related or allergy related or activity etc...perhaps there are allergens near your home that make your system sensitized and hence more sx...there is an immune or autoimmune component that may be going on after all...

its hard to learn to "live with" something like this but others with things like MS and diabetes do it...we have to also...which is why a supportive forum with accurate information and emotional support is so valuable.

feel better

[Gena]

The ups an downs are definitely frustrating. I've been doing well lately and climbing out of a very bad POTS hole that I was in for a few months. Tonight I wake up with heart racing and adrenaline surge from a nightmare.

I start thinkging, oh great, am I sliding backwards again? And then I am like you, always searching for possible triggers. I wonder what was the trigger for the nightmare...I went to two movies in a row at the theater tonight, I ate some candy today and greasy popcorn, which I normally do not, was it the intense nature of one of the movies I saw? Or was it because I fell asleep on my side? (which often triggers a nightmare for me). My BP wasn't even very low, so I really don't know what caused this.

I will sum things up by paraphrasing my cardiologist, Dr. Kusumoto at Mayo Clinic in Jax...

He said POTS/dysautonomia is a general catch all term for what is probably at least 40 different genetic defects/conditions/diseases. "This is why one particular treatment does not work for all of us." he said.

Which, is similar to the point Finrussak makes in her post. Personally, I think primary POTS is definitely somehow autoimmune related. I wonder what would happened if you moved out of your house into a different house but stayed in your same town, if your POTS would get better like it did when you went overseas? This may not be possible for you, but I'm just thinking out loud.

On another note, the licorice helps correct adrenal insufficiency and the adrenal glands are so importatnt as they produce hormones that regulate how we deal with stress and affect how we retain fluid balance. So the licorice probably has something to do with your improvement in some areas.

One day, I hope we find more clues as to discover the imbalances in our bodies and how to adjust them so that we can live life on even keel with out rocking up and down from good phases to bad phases.

Glad to hear you're experiencing some time of relief though. Hang in there. (sorry for rambling! )

Gena

[ramakentesh]

thanks for the feedback - im feeling better now after taking a vasoconstrictor similar to midodrine.

Yeah ive spent too much time thinking about this.

Both those posts were very informative and all good points and I agree with them.

For me my POTS can dissappear when im outside melbourne, but here i always get it back within a few days of returning - whether im living my old house, my new place i just moved into or my sister's house. It went away when i had a shower filter so i guess i can try that again.

Overseas or when Im sent away for work i always get better. Its quite strange.

Its not so much that i havent learnt to deal and live with POTS, its just that I find in annoying that the one city where my life, work, friends and life are located seems to be the one place where i get POTS. If i could work out why i got it here and perhaps fix the cause it would be nice. Otherwise i wouldnt bother trying to work out the triggers - for me ive never been able to any way - foods that i can handle one week, may set me off the next.

If i got POTS everywhere then i wouldnt have to bother trying to work it out and there us always the possibility of coincidents - that i just happen to get POTS when im here by shear luck.