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Another Newbie


porque
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Good afternoon,

I have lurked around here for a while but decided gain enough nerve to ask a few questions now...but frist here is my story: I am a 21 year old college student who was very atheletic and never sick hardly a day in my life until one day last Febuary. I came home from school, went and got an oil change for my car and then ate dinner and started to watch TV when I had the sudden urge to "go" (bowls were moving) following by dizziness and a rapid heartrate. Went to ER and doc said anxiety...of course I'm a young woman...I cant possibly have a disease. He tried to give my Avitan but I insisted on recieving a beta blocker...I'm pre med afterall and want to be a caridologist, so I am very well versed on matters of the heart. I thought I was just having probelems with my thyroid, because when I was aneroxic in the past, I went hypothyroid. Normal TSH, T4, T3 and antibodies. Basic CBC normal....catecholamine levels (urine) normal...cort stim test normal but overall cortisol was high...doc said it was due to stress...urine sodium normal...ANA test normal...CT scan of head and sinuses head normal sinuses showed slight infection...cleared up with zithromax. EP doc decided I had IST...underwent sinus node ablation...no changes in HR still high at rest and with standing/activity. Had tilt table test...it was inconclusive...abnormal but not really POTS no fainting no real BP changes no bracycardia. HR went from 145 to 160. So I have had the full work up. Nobody really knows whats wrong. I've been to 5 neuros, and EP, a caridologist, the best endo in san diego county, gyno, GP docs, opthomologist. One of the neuros is from the Mayo clinic...said it didnt really seem like POTS because I dont really feel any symptoms when I'm in the upright posistion. I still work, go to school and even manage to play softball...but it is hard. I get lightheaded spells, rapid HR, headaches in the bifrontal region, sometimes loose stools,high blood pressure spikes...espically when standing 140-120/90-100...occasionaly low BP 100/60, usually at night and when supine, but these come on in any posistion, not just standing...actually I feel better standing sometimes...its just depends. In addition to that I have develpoed dry eyes and skin and my fingertips get really wrinkled at times (I searched a post on this and nobody really responded.) Anyway I dont really know what could be causing and or caused this. The only thing I can think of is something I ate becaue all of this stuff started two weeks after I got food poisioning...there is a certain kind of rare food poisioning that can cause strange things like this to happen, becasue the bactieria looks a lot like one of your nerves and the body may attack them instead of the bacteria...I forget what this is called...will have to get back to you on this. Anyway my docs liked this theory and said I will probably get better but the nerves take a long time to heal. He also said that usually you start to heal from things like POTS and neuroraphies after the 1 year mark...do you find this to be true? I am so scared of the blood pressure spikes however, that I just want to lay in bed and do nothing in fear of stroking out. I think my BP is going high due to low blood volume in an attempt to get blood back to my head. Also I exhibit the ever so famous "White coat syndrome." My BP in the docs office will be 140/95 but be 118/78 at home an hour later. Does anyone else experience this? Any commnets or concers woudl be greatly appriciated. Take care. Veryblue and rqt9191 your cases sound similar please contact me!

Tasha

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Welcome!

First, are you sure that all of your labs were draw correctly, some of the POTS tests have strange guidelines? Second, you said your HR on tilt went from 145-160. Was 145 your resting heart rate while laying down?

Have you been tested for Sjogren's disease?

I developed tachycardia (POTS) over 3 years ago. I've finally started to get better this year because of all the treatments and medications that they have me on. I think that your recovery depends a lot on what caused your tachcyardia, i.e. virus, trauma, chemical exposure, etc.

Have you read some of the other POTS literature?

What medications are you on? Maybe I missed that in your post.

Sorry have to run out the door, will check back in later.

steph

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Hi Porque,

Welcome to this board.

After reading your story it sure sound clear that you have a health problem. I can't tell you which test you need to get diagnosed but I can tell you that it took me 30 years of telling doctors about my symptoms and to finally get diagnosed. You have to perservere and find "the doctor" that will know what you have.

When I went to NIH I was told that I was the first in the world to be diagnosed with this specific type of POTS. Here in Canada they did not have the equipment to test me properly so when they tilted me I did not fit the standing response of syncope and they told me I was psychogenic or had Munchaussen syndrome. Now I have some medication and better quality of life.

Good luck with your search.

Ernie

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Dear Tasha, welcome.. How is your fluid intake? many of us drink ALOT ( 2-3 quarts at least) and many of us use extra salt to ( 3 -as high as 15 mgs). As to the "white coat syndrome", just moving could raise your bp for extended periods of time. Others might have better advise. Personally I'm the opposite, everything goes dow, ususally to low. I hope someone here can help you with their stories.

Blackwolf

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Tasha,

Your story sounds similar to mine...i.e.,

"sudden urge to "go" (bowls were moving) following by dizziness and a rapid heartrate."

I had just eaten a new restaurant and woke up in the middle of the night with those symptoms you described. I had major tachycardia and chest pain along with it. It eventually subsided about 30 mins. later. I just assumed it was something I ate. A few weeks went by and I felt fine until one night after standing up to go the bathroom in the middle of the night, same thing, suddent tachycardia, had to go to the bathroom, chest pain, etc. I went to the ER after waiting for 4 hours for it to subside and it didn't. All my tests were normal too.

This started happening almost everynight. I bought a BP/HR monitor and realized my BP was really low. I did research on the internet and thought maybe I had dysautonomia. I also had a bunch of tests to rule other stuff out.

I went to Birmingham to a center that specializes in MVP and dysatuonomia. I was given a dx of both of these, although my TTT was inconclusive. I too get "White coat syndrome" my HR and BP stayed fairly high and steady because I was so anxious.

Then I went to Mayo for more tests, which all came out normal, except for elevated ANA which I've known about for years. MY TTT at Mayo was okay too, but again my BP and HR had shot up and stayed there all day b/c I was anxious. The neuro at Mayo did not think it was POTs b/c they couldn't see the change in BP and I told him my tachy doesn't always happen just when standing, nor does it always resolve itself when sitting down. He seemed to only go by the strict definition of POTs :)

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