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SomethingClever

Does Knowing Your Subtype = Better Treatment?

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So obviously finding your underlying cause makes a huge difference in finding effective treatment.

I haven't been able to find a doctor invested in running down all possible underlying causes, but Mayo is willing to see me again to run the basic autonomic tests again and allegedly tell me my POTS subtype.

It's going to be a tremendous pain to fly out there and I'm wondering if it's going to be a waste of my time. I'm going to go regardless, but I'm wondering if those of you who know your subtype have found that your treatment has become any more effective as a result of knowing?

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I was never diagnosed as far as a type of POTS. My specialist prescribed beta blocker and SSRI, more fluids and salts, and gradual exercise, and I got loads better.

I think getting more testing is very individual. I think if you are not getting better, it may be useful, to help tailor treatment, and identify and perhaps treat the underlying problem as well. You still need a specialist who will do something helpful with that information obviously.

I had asked my specialist about whether I should get more testing and his opinion was it was a waste of my energy and resources. But I got gradually better and other than having occasional flare-ups, I am doing fairly well.

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Guest Alex

My dr said he is 100% sure I have hypovolemic POTS (based on low sodium in 24 h urine collection). Meaning a high salt and water intake combined with florinef and propranolol (which I take since the beginning of the year) should help.

The reality is different. I haven't exactly seen any major improvement in my health or quality of life since starting my current treatment, plus I'm experiencing a whole bunch of new symptoms.

Unfortunately it seems to me that POTS is such a complicated issue, there is a lot of trial and error in terms of finding the right meds combo, and even the so called specialists can't figure everything out yet.

Good luck with your appointment.

Alex

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I agree with Mom...certainly it is up to you, but you couldn't pay me to go through that testing again!! My meds are still being tweaked, and I was a lot better until about a few weeks back. I had a lot of nerve pain, so they think I have Fibromyalgia, and want me to go to a Rheumatologist, but I'm tired of going to doctors, to be honest. I've heard Lyrica is not tolerated well by dysautonomia patients, but maybe neurontin or cymbalta would be. My question to you is...is it because you are still feeling badly with treatment, and feel like you aren't getting adequate care, or do you just want to know? because if is the latter, it wouldn't be worth all the trouble...

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I understand, you just want to feel better. I hear you, but I really don't know whether it will make things better for you either, because there is still so much they don't know!! Some places are just looking for willing guinea pigs, too, yes, for research, and I know that is important, but to be honest, I'm just tired of it all, so you've caught me at a weak moment. I was disappointed with my last 2 doctors appointments, so I'm not the one to be advising you either way. Do what you think is best :)

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Certainly if you can get more info about the mechanism behind your case that would help both you and the docs in exploring treatments that seem to work with that subtype.

And, like Kim I too am so tired of docs and spent a hlf hour crying in the parking lot of my last specialist visit bc I'm so frustrated that he was not willing to even try to help me. This condition can make you feel so alone- and most of the docs don't sympathize.

That said, I'm still fighting to figure out what can help me feel better- I'm just not counting that the docs to do it. So here's my game plan:

- Continue following w my team of 4 local docs. (primary, caridio, neuro & sleep)

- continue following w my out of town autonomic specialist. (8.5 HR drive / 3x yr)

- continue getting IV therapy as a "bailout" and for prevention before stressful events

- continue to research possible mechanisms that are effecting me

- find docs to help me rule out things I suspect.

(for instance I'm headed to Charleston in 2 wks to see Dr. Afrin to rule out MCAS)

- go to Vandy to participate in research. (application in- waiting to schedule)- the reason is not only to aid in research but specifically work w the leading US researchers on Autonomic dysfunction to gain their insight about the mechanics behind my POTS. (is NET deficiency an issue? Is this truly hyperadrenergic w severe pooling? To I have Renin- Aldosterone issues, etc)

- continue my salt/ fluid loading and exercise plan (adapted Dr Levine protocol)

- if I'm not feeling better after the heat of summer is gone (still 90s here), consider a chest port with at home multi day saline drip.

For your case I'd suggest you not go back to Mayo but perhaps go somewhere else where they will most likely have different equipment, testing procedures, etc. The likelihood you'll learn something helpful and new from another autonomic center is greater than going back to a place you've already been. Have you had a serum Catecholemine draw on tilt? I've been to CLeveland Clinic and it was very helpful. I know from that visit I have severe blood pooling but since I want more information I'm planning to go to other locations for better insight.

A side note, I've only had this thing for 1 year, but it has been a terrible year and I'm still fighting for answers and better treatment plans. I know many who have been down this road and are exhausted from the fight and a ready for a break from the craziness. My sister-in law has been fighting with docs for the last 13 yrs to find better answers and she has recently chosen to stop going to docs and stop w the testing. I totally support her decision and am glad she gets a little bit of peace. Rare conditions like these are like being on a roller coaster ride of ups and downs and unexpected adrenal surges that really mess w life.

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Sorting out and finally understanding (at least in part) the underlying biochemical mechanism that episodically holds my autonomic nervious system hostage has been the number one reason I have made progress. Before I connected my odd reactions to meds, food and environmental triggers to episodes of hypovolemia and subsequent syncope/presyncope and tachycardia/plummeting BP, I was a huge mess. It wasn't until I began to avoid the things that made me react, that I could unravel my ongoing symptoms. Now I have days where my episodes start and stop and in between I am symptom free.

None of the typical treatments for dysautonomia helped me before, but now that I have layered in those concepts with my current MCAS tretaments, I can abort the episodes. And knowing the meds, preservatives and drug additives that are known to cause degraulation has connected many dots for me. I can now avoid many things I react to, and am on my way to living a semi-normal life.

Best wishes in sorting out your underlying biochemical defects.

Lyn

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Guest maia

And knowing the meds, preservatives and drug additives that are known to cause degraulation has connected many dots for me. I can now avoid many things I react to, and am on my way to living a semi-normal life.

Best wishes in sorting out your underlying biochemical defects.

Lyn

Hi doozlygir, How did you find out which additives. preservatives and meds cause problems? can you share the list?

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Its my perception that the majority of people learn more about treating their disease on this forum than from their physicians.

Based on that, it would be helpful to know your type, so that you can follow the progress of others with that type and see how their trial and error practices work. You might pick up something you consider trivial, and it could be a huge breakthrough eventually.

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Maia,

There are several lists of degranulators out there. I started with www.TMSforacure.org, (under the TMS emergency protocol), www.mastokids.org and Mastopedia.

Degranulating meds

alpha and beta blockers,

NSAIDS,

opioids (codeine, demerol, morphine etc),

esther local anesthetics,

amphoteracin, polymyxin B, and vancomycin antibiotics,

atracurium, rocuronium, or succinylcholine muscle relaxants,

ethanol or alcohol products (including polyethylen glycol or other products ending in ol)

dextran

dextromethorphan

quinine

sulfa drugs (bactrim, septra, immitrex, and other sulfa meds)

penicillin

radioiodine contrast media

cholinergic receptor agonists

atropine

Preservatives and additives

metabisulfites, sulfites

methylparabens

Azo dyes (FD&C numbered dyes, FD&C yellow 5, FD&C red 40, etc.)

compound 48/80

benzoate

benzoic acid

Best wishes,

Lyn

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I'd say a large number of people here don't know their cause. I think POTS is treated with the same meds for the most part whether hyper/nonhyper etc.

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I think it is a huge help to find your mechanism. I recently went to Mayo, and learned that I have normal blood volume with the amount of salt and fluids I am doing ( positive reinforcement for continuing), I also learned that I pool blood even though I have no visible signs, so it makes sense to wear compression, I also learned my NE 3x higher than it should be even though I don't have signs of Hyper type POTS ( my HR runs 40's and BP low). So my meds were changed from Flurinef and Midodrine to Clonidine based off of these findings. Knowledge is power:)

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