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Where Do I Begin :(


nikigrl8883
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:(:) were do i start/ i am having a really hard time dealing with this illness and not knowing why i have pots i keep thinking theres a reason why i have that that is simple and i cant get rid of it if i only know why i had it :( i cant do anything anymore im not kidding nothng.....and i cant move out of my house now and even meets guys anymore. im stuck here ...my dad just got remarried again in april and 2 weeks later i had pots i dont like my step mom i cant even have friends over anymore if no ones here and im 23 yrs old my step moms new rule....i feel trapt in a prison becasue i cant even save money to get out of here either ....my friends want to go out to bars and clubs and i cant go ....and i so wish i could meet a new guy becasue i feel like i lost my soulmate he wont even talk to me now for no good reason ..he just disapeared///no one will ever want to be with a sick girl....im in a huge depression and i was in one before i got sick too becasue of loosing my ex bf now its like somone signed the death sentence...theres not one day that goes by that im not sick in some way...now i have chest pains all day and still got the tightning in throat along with tthe lightheadeness constantly i cant stand not knowing the reason for this.....i see that alot of you know the reason you have pots and i dont....not a clue...could be alot fo things i suppose ...and my doctor doesnt seem to be too interested his reply to me wanting to know why i have it was you may never know why...great i thought.... i am defentaly calling that place in boston for dysautmia i have seen 2 neurolgists though so far and they didnt even think anything was wrong with me at first until i had the tilt test before that they looked at me like was insane and told me it was anxiety...now they know its not but they still arent trying to find out why i have it...ive had alot of regualar blood work but i dont know if it was for alot of the stuff on the pots list....its just that ive had a very hard life so far since i can rember and i always thought when i grew up id be happy finally with my own family and now this ill never get out i swear thanks for listening

by the way i have a question when i had the tilt table test i also had the sweat test the breathing test and the one where they shock you on ur wrists and ankles i past all those tests the only one i didnt pass was the laying down to upright posture

(my heart went up to much) does anyone know what that means>? if u passed all the other tests i guess what im asking is does anyone know what kind of pots that is

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Hello

You might want to take a look at this message--it is a list of links to help answer basic questions about POTS:

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=1954

You may also send me your e-mail address (send me a personal message) and I will send you a basic article on POTS that may help you understand the different possible causes and the variety of treatments available.

Getting a better understanding of your diagnosis is a good place to start.

I was bedridden with POTS and am not anymore. Many of us have gone from where you are, to a normal life with a high degree of function. There are many treatments available.

It's good to talk out your feelings. I am glad you can come here to do that. We do understand a lot of what you are feeling b/c we have had similar experiences.

I am sorry you have difficult relationships at home. Do you have any friend you can talk to? Could you try seeing a couselor? Some are trained to work with patients with chronic illness. It can be helpful to have such a sounding board and support.

Take care,

Katherine

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My heart aches for you. I'm so sorry you are going through all this family stuff and this illness too. To be honest I don't think alot of us know why or how we got POTS. I have no idea. I was healthy one day and horribly sick the next. The only thing I'm fortunate for was I had my family when I was young when I got sick I was 27 with a 7month baby, 3yr and 6yr old so for that I'm thankful. But let me tell you the struggles of having this illness and raising a family...................not easy.l don't think it's easy for anyone even if you don't have kids. That might actually be harder since you don't have the extra push.

have you tried to talk to a counselor? Are you on any treatments? I have improved quite a bit in 2yrs but still have along way to go to feel highly functional but I believe I'm on my way with baby steps.

Their is hope for you it seems that it just takes time. So try to be patient and rest up so your body can heal. Also added anxiety is probally going to make recovery alot harder. Trust me I think that's the last link to my healing. If I can rid myself of the anxiety and lightheadedness I would be very functional.

I hope you find some answers. Also I failed all the tests you mentioned therefore I was dx with Idopathic (unknown cause) Autonomic Neuropathy or Autonomic dysfunction.

Hang in there and feel free to pm me if you need someone to talk to.

Dayna

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Nobody I know KNOWS why they have this illness?

20% of us have had mild form of this our whole LIVES and something makes it GRADUALLY worsen.

80% have sudden onset with all sorts or reasons given though not always proven. "Virus" is a big one. It also depends how LONG you have been ill before being dx. I was told I have CFS for5 years...became disabled 5 years after that...8 years or so after that, ANS problems discovered.

Saw Dr. Grubb in 2001 and he said most folks dont know WHY they have it. Just have to accept it and see what works. The sudden onset have a better record for recovery...though we are all different.

After 16 years of disability and illness before that that affected my energy, I know longer worry about WHY as that would make me insane.

Seeing a therapist about COPING with chronic illness is important. Newbies to this illness seem to think we all know why we are ill. That's not tru.

Sorry can't be more helpful. It's like looking for a needle in a haystack for most of us...I was told that from folks who went to Mayo, Vandy and other places as well. The folks that TRULY KNOW the EXACT CAUSE is quite small.

Folks can extrapolate but it's all a guess in most cases. Especially once you realize you were born with it but connect the dots LATER as the illness worsens.

The younger you are and the newer you are to this the better chance for recovery.

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i have no idea how i got mine either. it could have been from injury ( i was in a car accident half a year before i started fainting, i fell from a six foot wall on a training course, i was knock in the head with a rifle ), virus- i guess that may be possible but i haven't been sick--- that i know of atleast, vaccinations ?, chemicals, toxins, explosives, or whatever else i may have been exposed to. one day i was doing well... exercising every single day, going to work every single day and then out of the blue i fainted. other than the fainting i was just fine. then slowly i started developing migraines and then i started to develop all sorts of symptoms. i know that you would like to know how you got it and why. we have all asked that many times. maybe one day you will find out, i just don't know how to help you with that but i do want you to know that you are not alone. best of luck to you!

dionna :)

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honestly i think its from my pituitary gland malfunctioning...when i went to the hormone doctor in august i had a series of hormonal blood work done everything was normal except my prolactin level it was elevated so i had to have a pituitary mri which showed no sign of tumor the only thing it did show was my gland was borerline enlarged i showed it to a neuroligist and two radiologists and the endo doctor who all said there was no tumor and they didnt know how it would be causing me to have pots unless my other hormones were out of whack like adrenal and thyroid which they wernt / but they all agreed it was pretty darn wierd that i had elevated prolactin i have never been pregnant in my life so for it to be like that is odd unless i have a prolactomia which they saw no sign of! but it was enlarged ! makes no sence even to them it didnt....i do back to have more blood work in november i also dont think i can get pregnant becasue of the prolactin thing i am suppose to be taking a pill bromcriptine that they give to shrink tumors of the gland or to stop lactation it makes me sick when i take it but i try to everyday at night funny thing is last night i didnt take it and i felt good then i got really sick like major anxiety felt waves of lightheadedness and adrinaline so maybe it is that gland

oh by the way i got hit int he head with a bottle my forhead in november last yr i had a concussion where i got hit was in front of my putituatray gland im wondering if that threw it off or somthing :) i know theres no bleeding in my head or anyhting like that

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