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Any Hope?


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Hi Karen,

I wouldn't say I'm doing well, but I am relative to how I was doing when I first got sick.

For the first four months I was completely bedridden and needed assistance to make it to the bathroom. Even doing something as simple as turning over or fluffing a pillow sent my heart into a tizzy. On the tilt, I was only able to stand for two or three minutes before having near-syncope (I didn't faint but I lost postural tone and by BP crashed--60/20!). Then my health improved some and I was able to go out every once in awhile in my wheelchair, but was still mostly confined to the bed or couch.

I started Midodrine about six months ago and my health has continued to improve. I can now go to school part time, and can stand for up to 15 minutes on a good day before I become severely tachycardic. My health is slowly continuing to improve, and every day I'm able to do a wee bit more than the day before. If things continue to improve at the same rate, by next year I should have a tolerable quality of life (ie. going to school full time, grocery shopping etc). I don't think I'll ever be able to run a marathon, or climb a mountain, but I'm pretty confident I'll be able to hold a job and raise a family.

For me, improvement has been contingent upon my Midodrine and learning to listen to what my body tells me, but it also relies on staying positive. I've never accepted that I would be sick forever. This forum has also been a HUGE help, and has given me the strength to keep fighting, even when it seemed a losing battle.

I hope this helps, I know there are others on the forum who are doing much better than I am too.

Hugs,

Lauren

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Guest dionna

physically- no! mentally- yes! i still pass out or have atleast a few presyncopal episode everyday and all the pains and twitching and nausea and vomiting and loss of appetite and stomach issues and soreness and all the stuff. i stay in bed most of the time but i am happy with my life. i really need to get to a doctor but i have to find someone to take me first. the nearest hospital for my insurance is atleast and hour and a half away. just hang in there and you will see some sort of relief. i know that it isn't something that you should have to get use to but in some way you will. POTS is always changing and always coming with new symptoms but something good will happen. i don't know if you believe this or not but the thing i always say is that everything happens for a reason. there is always a lesson to be learned. just take careof yourself and know that others are out there just like you. when i first starting passing out all the time i thought i was the only one that did. i felt alone but i was lucky that i had supportive friends that would pick me up and hold me on the toilet and help me out in the shower. i was in the marine corps when it started. i was left out all the time. my dream job was taken from me but i am happy. i've gotten so much more out of life. i've learned so much and have experiences awesome things. i wish you well and i pray that you find something good. may God bless you.

dionna :)

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hi karen -

there are people who are doing well - both on the forum & probably even more so not on the forum. people have a tendency to disappear or be less active when out & about living a more "normal" life.

there have been several discussions about this in the past that you may want to peruse as well. here are two within the past year:

http://dinet.ipbhost.com/index.php?showtopic=2968&hl=

http://dinet.ipbhost.com/index.php?showtopic=5750&hl=

hope this helps,

:) melissa

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karen- there is hope... you have to hold on to your hope in order to make it thru everyday.. and want tog et out of med.. with out hope.. you cant fluirish...

there are people who do not really improve and continue to get worse or stay the same.. but as has allready been said.. there are people who do improve to a point where they are fairly functional.. with some limitations or adjustments i should say to daily living.. and knowing the things to avoid!

so please don give up hope.. you never know when you miht come across something that really helps you...(i should take my own advice!! lol :) )

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I happen to be one of the ones who is functioning--not without meds, loads of sleep, and this time of year--my cooling vest, which has made me able to be a bit more idependent in the heat. If you want to read about me you can go to my personal website that I've got linked in my signature.

Nina

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I would describe myself as highly functional--I still make modifications to my lifestyle to keep myself this way--I probably will not attempt another pregnancy, since that seemed to bring POTS on full-force for me. Mild symptoms come and go for me now. POTS is very unpredictable--but most people do improve with time and appropriate medications. My younger sister also has POTS and she is also very functional with low does meds. It is very important to try to continue to be hopeful--and no reason not to be. And I agree too that most people who get better don't continue to participate in a support group, which is why most forum users are struggling with difficult symptoms. Take care, Katherine

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