Time To See A New Pots Doctor?

[DIXZELAND]

I have been seeing my POTS doctor for almost one year now. He's tried different medications and they work from time to time. Right now I'm on Clonidine and Inderal. These two are not starting to work either. My blood pressure and HR are though the roof many days.

I was wondering if I should try to persue seeing a doctor at one of the famous hospitals like Mayo Clinic or Vanderbelt or any others whom are world known. I just wonder if it would make a difference in my POTS. I am going down hill slowly but surely. Little by little not being able to do the things I did just months ago.

Please any suggestions as I am desperite. Some days I don't feel good about myself and want to end it. I can't keep feeling this way. I feel out of control!

Thanks,

Dixie

[Godsgal]

I'm sorry you are having such a hard time. When my symptoms get out of control like that, I feel like giving up too. I would definitely see someone else and I would absolutely see a tertiary care center like Mayo or one of the others. We have a special condition and it requires an extra specialized doctor. Don't give up fighting for your health. I just got to a point where I was desperate and as they say, desperate times call for desperate measures. I got really desperate for relief so I did a complete overhaul diet wise. I got tested for allergies and I only eat all natural foods. That has provided A LOT of relief. I am trying to eat a mostly raw diet of fruits, veggies, nuts, honey with a little eggs and a little fresh cooked meat thrown in there. Absolutely NO boxed or processed stuff. And I think I may have MCAD so I eat none of the histamine containing or releasing foods. And I never cheat. And when I do, I suffer with my bp, heart rate, all of that. Sounds crazy but I think that God, prayers, and my diet have helped me a lot! I try to pace myself and give myself plenty of rest at night and during the day. And just so you know, I'm not one of those people that's running on a treadmill, working, and shopping at the mall. I was bedridden for weeks just 2 months ago and I take a wheelchair when I go out places. The diet and prayer have helped me immensely. Keep fighting and don't give up.

Sending hugs and prayers

[MomtoGiuliana]

It can take awhile to find the combination of drugs (and also non-medical interventions--diet, compression, fluids) right for you. Also it takes time to recover (most people do recover, at least to some extent, but this can be a very slow process with steps backward as well as forward). Keep in mind that these clinics can do tests but cannot treat you--you will still go back to your local dr for treatment. I would see what your specialist thinks about seeking further help. These are just my thoughts based on my experience and what I have seen on this forum over the last 8 yrs. Hope you begin to feel better soon!

[MomtoGiuliana]

PS I am sorry, I just read the last line of your message. If you are feeling desperate, please seek support, family, friends, counselor, hotline--whatever is available to you. I definitely understand that feeling I have to say b/c I also felt that way at times when I was very sick with POTS. I know how very hard it is to feel that badly. For most people this condition does get a lot better over time. Please continue to have every hope that it will get a lot better.

I saw a psychologist with expertise in hypnosis and biofeedback when I was really sick. He taught me relaxation techniques which did help me, at least mentally! Specifically, breathing exercises helped me. *Spontaneous Healing* by Dr. Weil includes information on breathing exercises for healing.

[comfortzone]

I have been seeing my POTS doctor for almost one year now. He's tried different medications and they work from time to time. Right now I'm on Clonidine and Inderal. These two are not starting to work either. My blood pressure and HR are though the roof many days.

I was wondering if I should try to persue seeing a doctor at one of the famous hospitals like Mayo Clinic or Vanderbelt or any others whom are world known. I just wonder if it would make a difference in my POTS. I am going down hill slowly but surely. Little by little not being able to do the things I did just months ago.

Please any suggestions as I am desperite. Some days I don't feel good about myself and want to end it. I can't keep feeling this way. I feel out of control!

Thanks,

Dixie

Hope you are doing okay -- I have the b/p being too high issue - and it's only getting worse now -- still fluctuates with low all in a day. Today I got like 146/106 when I awakened and now it's about normal - by night fall it will likely be 90's over 60's.

There's lots of reasons for refractory b/p and the usual doc to help I guess is a nephrologist. They can determine if it's essential hypertension or secondary to some other issue with the kidneys etc... My heart rate is doing fine however now on Bystolic - though it's creeping upward as well. No biggie though - it's still under 100.

If you do have insurance that has good coverage for Mayo - it did seem helpful to me & I'd encourage it. But the thing is even if you go there - there is no magic cure and you are essentially doing the same thing - after accurate diagnostics you are back to tinkering with meds. If you need the assurance that you are pretty much spot-on with your diagnosis -Mayo can check everything within a week or so if necessary. But as far as them 100% healing or curing - no they can't really do that....they are human beings helping you to feel your best just like the other docs (that are good docs).

Sometimes it's healing just to hear you are not crazy - this is real - and be given options for treatment from a new set of eyes. For the price of a plane ticket - a room for a week or so - your meals .... you have given another good shot at your best health. Personally I think you are worth it as is everyone of us with weird symptoms that most docs just don't understand. But you probably know that even though they can tell you what they think - and prescribe what might work - this disorder just seems to never stay the same. Climate, emotional states, hydration, all of it seems to change the way we feel. The meds too - seem to be very tricky even for the docs to titrate - bringing you to a place where you might frequently be calling and expressing 'the latest' in utter frustration. I've been given some leeway to titrate minorly on my own -- but then again I'm a nurse and that's probably why.

My doctor is actually treating me and he is from Mayo - so I do think some of them will offer to continue to help you with your symptoms rather than solely functioning as a consultant. How to know which will do which - I guess you have to ask them when you are there. I have no idea how long my doc will help me but my issues persist and aggravate the heck out of me in a very complicated case.....I think I probably wear on everyone...but heck all I'm doing is reporting what's 'not okay' - lately it's my ability to stand --- that's pretty significant - standing is a part of life, eh?

Anyway - blessings to you - and if you feel it's time to seek out help from a tertiary care center or big place with a good reputation for tactfully and expertly caring for pots and associated disorders.... you'll know it and go for it. Really if you can afford it and insurance is good - I found my local physicians welcomed the idea that I was seeking wiser counsel from Mayo - they were at a loss. Hopefully ego's don't get in the way. Sometimes you can simply self-refer. If not - it's a matter of sending xeroxes through fax or mail of your most important recent records that demonstrate your Pots issues and where your at with it all.