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pnaturegirl posted:

Hello Everybody!

I had to report latest with new cardio!

This girl could had cryed after leaving his office honestly!

To talk with someone, Who was not only knowledgable about the condition but also new things even I did not no was refreshing to say the least.

He was not intimated by my research at all and got me sorta speak, Which we all no is not a easy thing! LOL..

He said this was a misunderstood condition and while theres no magic pill to retune the automic system, There was things to help retrain it still.

Somethings, I had been doing all wrong actually but was going on advice from previous cardio too?

First off dehydration is chronic and a serious problem and water alone is not enough and he understood about the Gatoraide pumping my heart rate up more too.

He suggested, G2 or better Powerade and said all would benefit the problem.

My biggest issue is actually the low blood pressure and in that it makes my heart pump faster and harder trying to make it rise.

I will never be able to take standard heart meds because of this betas and calcium channel blockers which I did for several months?

The Fludrocourt does work well for some people but did not myself and screwed up potassium levels to much and side effects were not great either.

There is another drug however and it of course is highly expensive called Midodrine and it has to be taken 3 times per day to work and had helped many people with Pots.

Walmart who is always the cheapest is 170.00 monthly! I got online to pprx and they have heard of it and I am gonna fill out papers to see if I can qualify for a trial of it myself?

Next, I was shocked to hear him say I should had never been walking!!! He said to start out and retrain my heart and brain, I need to use a recumbersome stationery bike for about 2 months!!

Do to the blood pooling my legs when I stand, That is what makes me dizzy and combined with low b/p can make me faint easliy!

He said walking is something I need to build up too and after 2 months, We would see where I am?

Typical in cardiac rehab I have learned is using this style of bike first to retrain things.

Mom was shocked at that!! He said just standing in line and not moving at Walmart could be enough to send me down for the count!

It is worse in the mornings always for me, This is from laying down all night and then getting up, A form of Hypotension from the Pots.

He said there hope here, No quick fixes here but hope for improvements and it takes time.

Lots of theorys about the causes of Dysautonomia and one he belives in is hidden auto immune disorders like Lupus?

Funny, For over 3 years, Every year, Doc tested me for every darn auto immune disase there is known to man and when nothing ever hit, We went with Fibro.

Other theorys our traumas, Infections, Food Poisoning, Viruses and Surgerys etc..

He said a good possabilty for myself was my mystery respitory infection in 2008 that went into 2009 and wham this started up?

So at least he was able to give me some Hope and direction.

I cannot say enough however, Just having someone listen and get it mens so much here!!

So thats my day today and a good one at that!

Booch, He about fainted that I put fence up and in the heat to boot!

Somethings, I get more than ever I have to stop to protect myself a tad better than I have!

Looking into a fitness place where no membership is required other than month to month! He feels this is important key to help those wobblys!

Take Care,
Penny
Check out my facebook page called, This Crazy Thing Called Pots My new Exchange on WebMd called, Pots and Dysautonomia Exchange and you can always find me here on FM Exchange or through my email!
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forgetful88 responded:
Funny you mention respiratory infections. My son who is now 16 suffers from the dizzy spells &, light headedness when getting up from a sitting or lying position. Yes, he was diagnosed with whatever it is that causes he blood pressure to drop in an instant when getting up.

Back to infections, when he was younger he always suffered from respiratory infections, every year, it never failed, as a matter of fact his last one was in Sept.09.

Except, he does play sports & has always been cleared for sports. (football & baseball) In Texas it gets extremely hot, especially in summer and the start of football. If he is having problems he does not mention them to us or coaches. I will say he has never fainted, but I know when it hits him at home beause he gets unstable when getting up.

He was just cleared this past June to play sports again, I even reminded his doctor about it, all he said is he will outgrow it. As of yet he has not...


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