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  • I am 21 years old and have had POTS for about 3 years

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    Old 08-20-2006, 07:02 PM   #1
    NicoleMC
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hi everyone! I was researching POTS and I ran into this website. I am 21 years old and have had POTS for about 3 years. I had it under control--I was even able to workout and walk. But I recently got married and moved. Due to all that stress I have been having a pretty bad time. I was passing out almost everyday. My husband had to work so I went to stay with my parents for a little while. I got so bad that my mom was pulling me on a sheet so I could go to the bathroom without passing out. I was going to IV therapy 2 days a week and could not stay hydrated. Just like a lot of people that have been talking on this site...one of my doctors thought I had Adissons disease. I found that if I drink gatorade and pedialyte along with eating TONS --may I say TONS of salt I have been staying pretty hydrated. I am not back to where I was but I am doing a little better. I have not been to IV therapy in 3 weeks! I am taking midodrine, florinef, and chlonidine. I just want to talk to people to let them know that there are other people out there with this problem. The good thing is that I will soon be able to go home in about 20 days (yes I am counting down) and I will be able to be with my husband of 3 months!!!!!! Well, I hope to hear back from some of yall!

    Take care,

    Nicole

     
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    Old 08-25-2006, 08:38 PM   #2
    schao
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    Re: I am 21 years old and have had POTS for about 3 years

    Hi there:

    My doctor is sending me for a bunch of tests and I looked some of them up, and I think he might be considering that I have POTS. How did you get diagnosed, and what are your symptoms?

    Thanks!
    schao

     
    Old 08-26-2006, 09:00 AM   #3
    NicoleMC
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    Re: I am 21 years old and have had POTS for about 3 years

    Well for about 2 years they had no clue what was wrong with me. I was working out one day and I passed out. I went to numerous amount of doctors and they kept saying nothing was wrong with me. They finally sent me to do a tilt table test and I almost passed out while doing that. So then they sent me to a specialist in POTS. But my symptoms basically were passing out, irregular heartbeat, fast heartbeat and any time I tried to walk upstairs or walk up hill I felt like/or would pass out. Anytime that I get stressed my symptoms get worse. Recently it got really bad...everytime I got up to do anything I would pass out. I could barely make it to the bathroom and I couldn't stay hydrated for anything! So I went to my family doctor and he suggested that I get tested for Addisons disease. He said it has alot of the same symptoms as POTS. So I got tested but I didn't have that. So I would suggest getting tested for Addisons also. That is treatable unlike POTS. I wish you good luck and if you have anymore questions let me know! I am now doing a lot better and I want to help and talk to people that are going through the same thing! What kind of test are they planning on doing??

    Last edited by NicoleMC; 08-26-2006 at 09:01 AM.

     
    Old 08-30-2006, 03:07 PM   #4
    schao
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    Re: I am 21 years old and have had POTS for about 3 years

    Thanks for your reply. He's running some special blood and urine tests, and also a tilt table test. We'll see how it goes. Did you have a tilt table test? If you did--how was it?

    Thanks!
    schao

     
    Old 08-31-2006, 11:02 AM   #5
    NicoleMC
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    Re: I am 21 years old and have had POTS for about 3 years

    Yes, I had a tilt table test. To be honest with you...I hated it! They made me fast before and then did the test and then they put and IV full of fluids in me for 2 hours and then I had to do the test again. Good luck with everything!

     
    Old 09-06-2006, 09:06 PM   #6
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    Re: I am 21 years old and have had POTS for about 3 years

    Hi,
    Sounds real similar to my situation. Had a Tilt Table test today and was positive. So, finally down to NCS(similar to POTS)or Addisons Disease. Had the ACTH stim test a few months ago and the endo said I didn't have AD. After many hours spent researching both and reading posts on different sites, I find the two are really similar. They both make you tired, dizzy, pass out, tingling in hands and feet, salt addict, exercise intolerant, just feeling bad.. I don't know really, I'm no expert. But, since I've moved out of state since the stim test, I'm requesting another. Plus, the endo here did a plasma renin activity, aldosterone, & one other which I forgot. LOL (another symptom short term memory loss)! I have low sodium also. One thing that separates the two is the hyperpigmentation with AD. My endo didn't seem to think my skin was any big deal even though I told him I haven't even been out in the sun. One thing my husband pointed out is if it is a tan, why no tan lines. Hmmm... Hope this helps, somebody.

     
    Old 09-09-2006, 06:04 PM   #7
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    Re: I am 21 years old and have had POTS for about 3 years

    Hello to all. I'd never even thought about the fact that POTS and addison's have such similar symptoms. Mainly because I didn't think I had POTS, but thought I had vaso-vagal syncope.

    But I've always been heat-intolerant, sweated really badly no matter what the temperature, even took salt tablets as a kid [since my father had addison's, he always had a stockpile, and I just used his].

    In high school I can remember standing at attention on a football field [practicing drill squad moves] and falling down in a dead faint after maybe 3 minutes. And I always prefered to squat down, rather than stand straight up, if I was going to be in the same place for longer than a few minutes.

    Actually, after I was diagnosed with MS in 2000, and started researching on-line, I came across all the various medical terms for fainting, and the slightly different reasons and symptoms of each. I settled on neurally-mediated hypotension because, with MS, obviously some of my neurons are mis-firing.

    Probably should quit wondering about it, and ask for an ACTH stimulation test and a tilt table test and some of the other diagnostic tools, and find out for sure what I have. But the feedback on this message thread has been a big help to me. Thanks.

     
    Old 09-18-2006, 12:21 PM   #8
    NicoleMC
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    Re: I am 21 years old and have had POTS for about 3 years

    Scoripi-
    I was wondering if you got a tilt table test and ACTH test lined up? or have you done either yet?? Hope all is going well!

     
    Old 04-02-2007, 01:44 PM   #9
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    Re: I am 21 years old and have had POTS for about 3 years

    Hello, I have been recently diagnosed with POTS only I have not been fainting. My heart races, I feel weak, do not like to be hot, sunlight bothers me, etc. I think I've had it at least 7 months but had a stressful life episode in January and it brought out the POTS full steam. I was quite sick for a good month. I am using Xanax and my primary care doctor is suggesting florinef and high salt and possibly zoloft. Any thoughts on this? Anyone using Florinef? I'd like to find out more about this.
    Thanks.

     
    Old 04-25-2007, 10:46 PM   #10
    mngirl
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hi Nicole. I was just wondering how you were doing with your POTS? I hope that all is going better for you.

     
    Old 05-11-2007, 08:32 AM   #11
    dreemilyn
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    Re: I am 21 years old and have had POTS for about 3 years

    I have POTS also but I've been looking into other things because even though my blood pressure and heart rate are stable because of my Proamatine & Florinef, I still feel sick. I feel exhausted and out of it even when my bp is fine. That's when I came across Addison's and you're right, a lot of the symptoms are the same. I was really surprised. The thing that really got me thinking I have it is because I don't have a menstrual cycle and there has never been an explanation as to why.

    But anyway, I was diagnosed with POTS 2 years ago and its a difficult diagnosis or atleast it has been for me because the medicines haven't allowed me to return to my life. But you're right, salt is really helpful and I don't eat it as much as I should so thanks for the reminder!

     
    Old 05-20-2007, 09:35 AM   #12
    beeatrice
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    Re: I am 21 years old and have had POTS for about 3 years

    I wa sjust diagnose dwith POTS about 3 months... They just staretd giving me miodrine but all the side effects it can cause scare me..... how di dyou do withthe medicine?

     
    Old 05-20-2007, 01:23 PM   #13
    dreemilyn
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    Re: I am 21 years old and have had POTS for about 3 years

    I dont get many side effects from Proamatine although in the beginning, like I said in the other post, it was difficult. The only major side effect I noticed was that I had tingling on my head - lots of people notice this but it goes away within time and its not that hard to deal with. I get muscle aches from time to time that I'm not sure are from the Proamatine but they could be. You should always monitor your blood pressure on this drug since it raises it. Every once in awhile mine will spike up too high but standing up usually makes it go back down.

     
    Old 05-20-2007, 01:28 PM   #14
    beeatrice
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    Re: I am 21 years old and have had POTS for about 3 years

    What was your blood pressure before the drug and how high doe sit get from it?

     
    Old 05-22-2007, 11:26 AM   #15
    dreemilyn
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    Re: I am 21 years old and have had POTS for about 3 years

    Before I started my medicines my blood pressure was dropping as low as 80/30. After I took them it remained pretty much perfect, 120/80. Every once in awhile I'll have a spike and I stand up to get it to go back down. The highest it ever went was 160/100 but I'm told that doesn't happen to most people and as long as you're healthy, it's not dangerous.

     
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