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Mayo Suggestions


deeplyset
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I went to the Mayo Clinic and saw a Antonomic Specialist in Dec. He gave me a few very practical suggestons to deal with the POTS that has immensely helped me so I thought I would pass them along.

I know that may be elementary for some but they also my be revolutary to others (as they were to me).

He showed me a technique while standing to cross your legs (like as if you had to go to the bathroom) and squeeze your thighs.

This pushing your blood pooling in your thigh muscles and legs up into your heart and helps your heart not have to work so hard. He tested my heart rate and blood pressure while I was stand and did this and my immediately dropped by 20 bpm. It also deceased my dizziness and nausea.

It has increase my ability to stand. And has help me get through quite a few tests already.

Next, to told me that instead of drinking Gaterade (as suggested by the Mayo Clinic in Scottsdale) that I should drink Pedialite (a baby drink for dehydration) because it is higher is sodium and lower in sugar than Gaterade is... It found that it is like an Energy drink for me and much for effective then the Gaterade was.

Next, he pointed about that a lot of my symptoms were being exagerated by two factors #1 mirgraines and #2 hyperventilation. In identify the difference of what was what I would be able to identify what I could control better and what I couldn't.

I have felt very helpless and "victimized" with my whole POTS experience. Knowing there were factors I could control and things that I could contributing to feeling better has help me feel way better.

He said the one of the biggest problems POTS patients face as a whole was hyperventilation. It agggravates their symptoms. He pointed out to me that not CONTROLLING and really focusing on steading my breathing was causing me to #1 panic, #2 get weak really fast, #3 pass out quicker, #4 light headness, and other things like confusion and disorented because of the lack of oxygen. Just focusing on breathing steadily has been really REALLY hard but has help me feel better and not get nearly as bad off as I use too.

I never realized before that my mirgaines were playing such a big role me me feel so rotten. He pointed out that a lot of my weakness, and the vision disturness, speech disturness, the paralization and some other symptoms were the mirgaines. I then later was diagnosed with hemiplegic migraines (headaches associated with paralasis).

Anyway. I don't know if any of this will help anyone else but I hope so because it sure helped me.

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Deeplyset,

Thanks for sharing all this. I'm sure it will be helpful to many people. We all like to hear what the docs at Mayo say.

What do you take for your migraines? My family physician has been unsure of what I can and can't take with POTS because normal migraine meds open the blood vessels which seem to be opposite of what we need ...??? I'd love to know what you have tried.

~Roselover

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Deeplyset,

Thanks for sharing all this. I'm sure it will be helpful to many people. We all like to hear what the docs at Mayo say.

What do you take for your migraines? My family physician has been unsure of what I can and can't take with POTS because normal migraine meds open the blood vessels which seem to be opposite of what we need ...??? I'd love to know what you have tried.

~Roselover

I tried a lot but I get nerve block injected into my occipital nerves every 2 months. I think I would have died had I had to learn to live without these. I go to a NeuroOpthmaogist (sp?) and he injects them. It takes like less than 5 minutes and I get instant relief. My headaches goes from like a 9 to a 2-3 in seconds. I get them on both the left and right sides of the back of my head. I'm good for 2 MONTHS and them have them again.

IT'S A miracle! My POTS symptoms allievate also. For the rest of the pain this is what i do... I also take topamax - 100 am and 100 pm. That was a long story to get too. And IBP 800-2400 mg. But, really it's the occipital nerve block injections with Marcain (just a numbing agent) that does most of the work.

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Thanks for sharing the recommendations from your Mayo doc. May I ask who you saw? Thanks!

Dr. R.D. Fealey, 200 1st St SW # W4 Rochester, MN 55905, 507-284-2511, Neurologist (Autonomic Specialist).

I was really pleased with him in the since that he was able to give me a lot of helpful advice but as far a follow up and through... I've been disappointed. I figured if I want that kind of attention I'm going to have to pursue him or go somewhere else. He is extremely smart and he even invented different stuff to test conditions of for atonomic patients (ie the sweat test). He is very much into the research side of the whole atonomic disorder side, which I like to because It made me feel hopeful that people are out there looking for answers for us :rolleyes:. Maybe, one day...

Rachel

Deeplyset,

Thanks for sharing all this. I'm sure it will be helpful to many people. We all like to hear what the docs at Mayo say.

What do you take for your migraines? My family physician has been unsure of what I can and can't take with POTS because normal migraine meds open the blood vessels which seem to be opposite of what we need ...??? I'd love to know what you have tried.

~Roselover

Roselover,

About the injections I also wanted to mention because they are relatively straight forward and easy even my MD can do them on a regular office visit. So, you may not even have to go to a specialist.

When I initally get the injections it was kinda complex. I got them by trigger point injection in the hospital by an anthesiologists. But, once they found out how amazingly they helped and alleviated my symptoms (both headaches and POTS) my regular Docs. got me on these nerve blocks. It's just so simple, and easy going... I can't praise them enough.

Rachel

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