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

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

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??

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

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!

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.

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.

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!

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.

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

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!

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?

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.

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

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.

160/100 is not dangerous? How do themeds make you feel? Im so nervous in taking them becasue I hear the are pretty stron and can cause strokes etc which I know any meds all meds have some side effects .. just a lil scared and truth is dont know if it wil help...also do you feel lighteheaded, disoriented dizzy only when you stand up or do you feel it while you sit?

I feel worse when I stand but I've also had symptoms sitting. I know a few people who take Proamatine and nobodys had any real problems with it. You just need to monitor your blood pressure while on it and I would increase it gradually. Your doctor should take an ultrasound and other tests of your heart to ensure that it's healthy and that everything's okay before you take the Proamatine. I used to be very concerned when my pressure went up that high but my doctor reassured me that high blood pressure only becomes a problem when it's consistent and if your heart isn't in good condition. If I were you, I'd write down a list of questions about it and ask your doctor - that way you'll have more peace of mind about it.

I take 10mg 3.5 times a day. Some people take more, others much less. It all depends on what your doctor thinks you need.

For me, the benefits have outweighed the negatives. I no longer faint or get as lightheaded and like I said, my bp is stable now so it was worth it for me.

[thank you.......QUOTE=dreemilyn;2999298]I feel worse when I stand but I've also had symptoms sitting. I know a few people who take Proamatine and nobodys had any real problems with it. You just need to monitor your blood pressure while on it and I would increase it gradually. Your doctor should take an ultrasound and other tests of your heart to ensure that it's healthy and that everything's okay before you take the Proamatine. I used to be very concerned when my pressure went up that high but my doctor reassured me that high blood pressure only becomes a problem when it's consistent and if your heart isn't in good condition. If I were you, I'd write down a list of questions about it and ask your doctor - that way you'll have more peace of mind about it.

I take 10mg 3.5 times a day. Some people take more, others much less. It all depends on what your doctor thinks you need.

For me, the benefits have outweighed the negatives. I no longer faint or get as lightheaded and like I said, my bp is stable now so it was worth it for me.[/QUOTE]

Hello I am from Missouri. I just started seeing a Dr. who treats POTS. I am on florinef and Toporal. Now I have been haveing symptoms since I was 15. It took them a while to figure it out. I am now in College, and its hard to get up in the Morinings so i don't have Morning classes. A lot of my friends kind of look at it as a sickness, thinking i am just sick a lot. So i was just wondering how you deal with symptoms, and life.
Thanks

I've had to make alot of adjustments in my life unfortunately since the condition started for me. I don't work or go to school at the moment although recently things have gotten a little better for me for whatever reason so I'm slowly moving toward doing more. I'm glad you found a doctor who specializes in POTS; that will be extremely helpful. For me, the Proamatine has been a real lifesaver - I no longer faint but as I said before I tire easily and feel weak alot of the time. Make sure to load up on salt and drink as much water as you can or Gatorade. The compression stockings are a good idea too. Propping your legs up when you're feeling symptomatic helps. Exercise is important too although alot of people with POTs have trouble tolerating it. Just do as much as you can but don't overdo it...my doctor told me that any type of pool exercise is GREAT for circulation even just walking back and forth in the pool is a good idea. Mornings are rough on me too for whatever reason. I will say though, if I have a day where I don't feel good and sit or lay around all day I tend to feel worse so you do have to push yourself to a certain extent but you have to learn your limits which is really tough in the beginning. Things WILL get better and there is a lot of research going on right now about this. You'll improve within time. ::Hugs::
I'm part of a support group that has been very helpful to me but I just read that I'm not allowed to post the name of it on here unfortunately. :(
Thinking of you!

My doc just took me off of my toprol due to side effects and placed me on Theaodur. It is an asthma medicine tha is suppose to help POTS patients. So far the down side is i feel like i'm on major caffine! Trouble sleeping, etc... Thanks for all the advice! I'm still looking for a support group online!!