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Hi Everyone,

For those who don't know me I was bedridden and in a powerchair for 8 years, fainting 5 to 10 times a day. I saw Dr Grubb and Dr Goldstein and my local doctors who helped me tremendously with medication. Then I went to rehab for a year, exercised with older people (average 72 years old) for a year, and now balroom dancing.

I have been very busy for the past 14 months renovating my house with my husband. We finally finished the job and now we just put our house for sale as we want to buy a smaller one. I still have difficulties going upstairs and we want a bungalow. We presently have a huge cottage.

Also, during the last year I have been taking 4 - 1 hour ballroom dances classes per week and practicing every second Saturday. When I first started dancing last year I danced 5 minutes and sat 5 minutes. Now I can generally go through the whole class depending on which dance we do. I can also stand up much longer than I used too last year. So, I realise that dancing helps me improve my general health. I am always careful to sit down when I feel dizzy or nauseated. When I tell my husband that I have to sit down and I rush to a chair he does not ask or argue. He comes and sits with me and waits until I tell him I can continue the dancing class. I am so happy to be able to do something I enjoy doing again. I am far from cured but I have a better quality of life.

I still faint about twice a month but I can live with that.

Love to all.

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Good to hear from you Ernie, especially with positive news! Sometimes it seems that there is no hope, because the only folks who post (it seems) are sick. The healthy ones are just too busy living life to the fullest to drop in and say "hi"! I see a local (Charlotte, NC) headache specialist tomorrow, and Dr. Grubb next month, and physical therapy is at the top of my wish list. Seems to be the only thing that has given me a measure of success, at least for a little while! I sincerely hope you continue to improve. And how wonderful that the activity responsible for your improvement also promotes closeness between you and your husband, talk about ideal!

Sandy

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hi ernie, great to hear from you! it seems you've made great progress, i'm really happy you're back on the dancefloor together with your husband, enjoying your life again.

wishing the two of you a bright and happy, potsfree(as far as possible), future!

love,

corina :)

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Thank you fot sharing your wonderful news, Ernie. We've had quite a bit of chatter lately about the restorative power of exercise. You are another success story. Check in with us in between waltzes :P

Julie

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Wow, what an amazing success story! Sounds like you have worked hard for it. All this talk lately is making me want to try exercising -- but where to begin!?

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Thats great Ernie :D

So to the docs that dont see the point in trying out meds etc, our story tell them wrong=) I used to dance, one of the last things i did when could still stand some more up was dancing and horse bakcrinding... Problem was that many wouldnt danse whit me, it freakt them out that i suddenly lay on the floor B) but the last tango class i attended it was nice to se the other dance, but my body ust couldt deal whit it any more... The last horse was a very kind one, the stoped when i fainted or gott ill, a wounderfull horse..

I actually are going to start terapi horseback riding now, i have been one time. The smallest lilte creature, not such a long way down then. And i had two on each side of me, and one infront of the horse, i feelt a bitt impearest for a sec, then i couldnt care less, I was on a horse :D

i hope u stopp by here once in a while and tell us how u are doing. :) Its wounderfull news...

(ps again sorry for my spelling, but my weird word creations might but a smile on someones face, ;) )

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That's wonderful news! This kind of story gives us all hope. I just posted a topic about "anyone ever gone into remission" and you my friend have answered it as YES:) This really puts a smile on my face. Again thanks,

Dixie

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Ernie, I have to ask. I am NOT trying to discount the exercise as your "saving grace". I am just trying to look at this from all angles!

You stated in a post from last year that you had started DepoProvera to stop your periods and gave you a great start at recovery. We have had talk in the last couple of months about pelvic congestion syndrome, and one dad was mentioning that progesterone might help in "constricting" those lax vessels in the pelvis.

Do you think progesterone has in any way contributed to your improvement? Besides the possible help to people with pelvic congestion, progesterone is a steroid that shares a pathway with cortisol. This, indirectly, could influence blood volume.

I'm just asking because we really need to break down into specifics what could be at the root level for some of our issues. I know you said genetics for yours, but what if progesterone is the key to some who have lax vessels related to genetics or not?

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Wow, what an amazing success story! Sounds like you have worked hard for it. All this talk lately is making me want to try exercising -- but where to begin!?

This is what I'm doing: http://www.hyperadrenergicpots.org/BENEFITS--OF---EXERCISE.html I'm up to 5 minutes...YEA!!!

Ernie,

Soooo glad you have found your way! I have never been to the point where I've stopped working but sometimes I'm just plain miserable. B/c my doc has me feeling better on meds, and I'm starting an exercise program of my own, I have decided to try & play the violin. It's never too late I guess and it is a hobby to keep me going.

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Ernie,

We haven't met, but I just want to say HI from a fellow ballroom dancer. I am so happy that you are able to do this again. I miss it so much. But maybe one day... It was nice of you to post because it is good to hear success stories.

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Ernie,

I am so happy for you. Back in the day, I used to do a lot of dancing, three times a week, to be exact.

Lately, I'm gradually building up my abilities through exercise.

For anyone else out there who is thinking about all this. There may be other things that would benefit your condition. For me, it is supplements, monitoring my thyroid hormone dose, eating organic and good food as much as possible, taking antibiotics for my "small intestine bacterial overgrowth" every three months, etc. There are too many things to list that I've done differently since I began reading this forum.

If you do decide that you want to exercise, don't do too much at first. Remember, we are not like normal people. Start real slow, little bits, Keep at it. There is hope. Don't overdo, and don't give up. When I say start real slow, I mean choose an exercise that is done near the floor, at first. Don't do too much. But, don't give up. Then, come back on here and let us know how it went. (Do not do anything without first consulting your doctor.) As one other person mentioned, do not expect that you can do even five minutes worth of exercise, unless you have been doing it for a while.

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My Dear Friends,

Thanks for replying to my post. I think of you every day even if I don't come here very often anymore.

I was just told today by Realtor that I dream in color. I told him that I do dream in colour but my dreams do get fulfilled and if I dreamt in black and white I would already be dead and 6 feet under. Then I told him that he should dream in colour too. He stared at me so discouraged because he wanted me to accept a cut in the selling price of my house.

Anyway, back to POTS, I think that we always have to keep our hope of improvement and try different treatment plans, either medications, exercise, food, alternative therapy, etc. Whatever helps you.

Eleven years ago, the psychiatrist asked me what was my dream, if I could stand and walk again. I told him that I would like to be able to dance again. So that has been my focus for the past eleven years.

So in 2007 after almost dying 3 times in the hospital and the doctors wanting to send me to a nursing home for the rest of my life I fought for my life and pleaded to be rehabilated. I went to rehab for a year. The exercises consisted on working my leg muscles laying flat on the floor by bits of 1 minutes at a time with resting periods. After a year I was able to exercise sitting and the 3rd year I started dancing.

I took Depo Provera in 2007 for 1 year because I had endometriosis. At that time I was fainting every time I stood up or straining even on all meds because of the pain. Within 2 weeks of taking Depo Provera the syncopes decreased 80% because the pain was almost gone.

Love

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i'd like to add dear friends that it's not just the exercising that helped ernie get where she is at right now. she also mentions the (local) doctors who "helped tremendously with medication". i realize there's a lot of excitement about exercising going on, but please don't forget to ask your doctors first about what you can or can't do. like ernie (and lots of others) did. i'm a big fan of exercising but i know (from experience)that it's just not for anybody at any time.

really glad that you've been able to get to the point where you can enjoy your life again ernie. now all you need is a good price on your house :)

take care,

corina :)

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Hi Ernie,

Thanks so much for coming back to check in and let us know how you're doing. It is great to hear that you are dancing! Keep enjoying it!

Rachel

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My Beloved Friends,

I am sorry if I let you believe that exercise is a miracle treatment. It is not in my case. I started exercising after finding the right medication combination, eating well and sleeping better. I still take many medications which I will have to take for the rest of my life. Unless researchers can modify my genes I am medication dependent to live and be able to walk. The doctors had to find the medications that solved all the problems that made me faint in the first place and with the meds on board I was able to start rehabilitation. Maybe some of you will be able to live a more normal life just exercising and without meds but that is not my case it and I don't think I will live to see that revolutionary medical treatment. Younger generations have a chance at it and I am happy for you guys and girls.

I also accept the fact that I have to take meds every day to be able to function. I still can't work but I can do my grocery shopping when the store is not busy and I sit on my portable chair at the cashier.

So my life as improved greatly from the days I spent 5 days a week at the hospital, played puzzles and watched TV all the time, fainted everytime I stood up, spent 4 days in the ER once a month and had no life whatsoever.

I still have to be very careful about my triggers and stay close to a chair or a bed but now I can go out by myself which is so great. I love to be independent, be able to leave when I want and go where I want as long as it's not too far and not for too long.

I have a great team of doctors who believe in me, know reasonably well my disorder and treat me well. What can I ask for more!

I am at peace with myself and I live one day at a time and I enjoy the freedom and the renewed capacity that I have. I can't explain in words how great it feels to be out of a wheelchair and walk all by myself alone in a shopping center.

I am still working on improving myself as I fell that my body has the capacity to do so. It is a long process and I have to be very patient.

I know that you too can do it if you find the right combination of treatment plan.

I keep thinking of you and hoping that you all improve and get a better quality of life.

Love

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Ernie, it sounds so good to hear your post!! I crave what you got back! I know how you must treasure the simple act of going to a store by yourself. We have all learned to really appreciate the small things. :)

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good to "see" you ernie, and certainly very happy for you and all the positive changes in your life. enjoy and keep dancing!

B) melissa

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Guest tearose

hello and wonderful news dear old timer!

Well Ernie, you sure demonstrate how dedicated you were and are in getting the best our of your body even with the challenges in your genetics!

It is so good to hear you have found the right treatment plan.

So I suggest you try out for "dancing with the stars"!!!

Keep enjoying every moment of life and thank you for saying hello.

Love and Light,

tearose

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