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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
Avatar universal
12/12
Just a quick note to say hi! Wondering how you are doing and what ended up with your trip to New York. I am going to be going to the Cleveland Clinic in a couple months and hope to have some more answers.
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Avatar universal
11/12
i feel really stressed out n emotionally stressed as m far frm home n feel lonely wat 2 do can u help?
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Avatar universal
11/12
hi!
i dnt kno wat 2 sae buh m jst 18 n i feel this change in gravity stuff has sumthing 2 do wid my symtoms....
i feel so scared n panic attacks, i feel hungry all the tym n burp most of the tym n m i did sum tests n evrythin was normal no reason at all but still i feel sick....
i used 2 liv in hilly region n den came 2 the plains 2 stdy in collge so i guess m havin this prob sumtyms i feel cold n go 4 my pulse but it seems normal but sumtyms it jst raises rapidly i feel sumthin stuck lyk in my chest in the
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Avatar universal
11/12
I live in Michigan, the metro detroit area. I went to one U of M specialist and was totally disappointed. I recently went to an electrophysicist? that someone recommended. I am waiting for the results from tilt test. But I think I did fine that day. Some days BP isn't as bad, especially when I am on BP meds. Then days like today are awful. I called them 2 weeks ago when I had a bad episode and they said go to primary they don't think this is related. Primary says symptoms don't make sense. I don't care if they don't make sense, they just are. I know this is something I cannot cure myself but don't know where to turn. Some days I feel like what ever this is, it is going to kill me. I have even thought of making appt. for Mayo in Minn. Where ever.
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Avatar universal
10/12
I am on a beta blocker and an alpha blocker. Could hyper pots cause symptoms, like left sided throbbing/pain in neck, face/head, left side and left knee area, along with pressure below sternum. Before the BP meds the episodes were much worse, emergency room worse. Then I had additional symptoms of intense head pressure, sweating and pallor. Really thought I was dying. Now episodes still can be very bad, but BP hasn't gone to crisis numbers. Still even when my blood pressure isn't too bad I feel awful. Just got off the phone with an old friend and she said not to be mean but how can the doctors think you look fine. You look so thin and sick. (Thanks LOL). I so need to find a doctor than can help.
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Avatar universal
10/12
Would you mind sharing some of your symptoms and some of the treatment they are suggesting for you? I am not sure what I have wrong with me, but if it is pots, it would be the hyper. My BP goes high when standing, and heart rate too. This all happened in the last year, in the beginning I thought I had angina or some heart problem,Long story short, by May I was in hospital with uncontrollable bp and feeling awful. But no doctors seem to know what it is. I am on two BP meds which seem to help the BP most of the time, but it still spikes high durng episodes. Once I have an episode it takes days or weeks to slowly recover. Even when BP is ok I am still having these pain/symptoms. I was extremely active, can no longer do stairs, lift up heavy things, and at times cannot bend.
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Avatar universal
10/12
Just wondering how your trip went and if you have gotten help.
I am still waiting on results and a diagnosis. I had another relapse/episode that lasted about 10 days, am slowly getting better. It is soooo frustrating.
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2071518 tn?1340383343
10/12
Thanks for sharing that mountain of info! I would imagine it is a relief to have that trip over and nice to have a firm diagnosis! Other than blood pressure, what tests were performed to measure these levels? Are the meds helping or is it too soon to tell? Glad you are safely back home. Take care.  
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2071518 tn?1340383343
10/12
You're in my thoughts all the time, but especially today. How was your trip?
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1331422 tn?1326566597
10/12
Hope you feel better soon!

I would suggest everyone go to an EP.  They can find out what's wrong by going up your groin into your heart and fix what's wrong.  Please don't let it scare you.  Doesn't hurt because the give you conscious sedation.  I hope you feel better soon.  I was in such bad shape and so sick, but now I am fine.  I put it off going to an EP as long as possible, but I was having trouble almost passing out all the time.  My heart was slowing down way too much.  When your natural pacemaker wears out, they just give you a pacemaker.  You don't even know it's there except you feel normal.  God bless everyone.

Warning:  Check out any EPs carefully before choosing one. I have a good one, but she is in  Arizona.
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1331422 tn?1326566597
10/12
Just a quick note to say hi!

No I have never heard of this, but it is very interesting.  I had an EP study, two ablations, and a pacemaker installed.  I am doing just fine now and have never felt better..    Thank you for thinking about me.  
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2071518 tn?1340383343
10/12
I have been struggling for years with near fainting episodes and recently they became so severe, my doctor is going to test my heart. But she mentioned POTS as a possible cause. I'd never heard of it before. I can't do a tilt table test right now because I'm recovering from a broken foot. How were you diagnosed?
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Avatar universal
10/12
Hi brianne, I'm not in America unfortunately :( but thank You
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Avatar universal
10/12
Hi Madame, sorry to read of your struggles too. I am still ill and it's very frustrating not having found any answers. Every doctor assumes I'm either a hypochondriac or just anxious. My latest doc basically said she's exhausted all resources and can't do any more tests for me, so now I'm stuck trying to find yet another doc who will listen to me.

I've lost 16 kilos and i keep loosing despite of what I eat. Some people have suggested POTS to me, but no doctor seems to have even heard of it when I've mentioned it....

I hope you get better very soon

Lena
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Avatar universal
10/12
Wow, thats a lot of testing! But that is great, maybe you will find out some important answers. Not finding doctors that know what to do is so frustrating. I have had some doctors not believe (in the beginning) then I had some really caring doctors that just didn't know what to do. I am hoping I have finally found a doctor that will help. I go for a Tilt Table Test this Monday. I am a little afraid. For two reasons- one when I am on my medications my increases are not always as extreme, just when I first wake up and then some times. Second they are going to inject me with something to stimulate and I am afraid that I will respond and it my BP goes up so high and I am in a lot of pain. So LOL I am afraid of both outcomes!





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Avatar universal
10/12
Just a quick note to say hi!
I am currently being tested for hyper pots and am looking for information from people currently diagnosised with it. I would love to hear about the trial you are involved in and how you are managing your condition. I have been having problems for a year now and afraid of not getting better.
Thank,
Joann






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Avatar universal
10/12
I've had weird heart rhythms since I had a miscarriage 8 years ago.  Right after, it would randomly start beating REALLY fast, but I didn't feel like it was anxiety, since I was no more anxious than usual, and sometimes would awake me from a deep sleep.  Then the beat-skipping started.  When it happens, I get a surge through my body that I can't describe.  Then, my face feels really hot, but often I turn so pale that anyone looking at me knows something has happened.  The last really bad episode was the other day.  I was sitting, and I bent over, and I felt several skips, and things started to go black.  I felt tingly from head to toe.  I think that about covers it :)  Oh, also, it makes me very tired.  For a "healthy" 29-year-old, I'm very inexplicably fatigued.
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Avatar universal
10/12
I'm new too, so I don't know how to send a message yet.  Basically, I can feel my heart skipping beats.  I go through worse phases and better ones, but sometimes I nearly black out, and it's always scary.  I used to have chest pains occasionally, like maybe only once or twice a year; now, they come and go several times a day.  My doctor's PA said if I can point to the general area of pain, then it's musculoskeletal, and I wanted to point out that the heart is a muscle, but I didn't.  She told me I didn't have a heart attack after being up all night with chest pain, which I knew, but she refused to do testing because I'm a healthy, non-smoking, non-drinking 29-year-old.  My blood pressure is always high when I go in, but no one other than the CNA's who check it ever even comment on it.  
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Avatar universal
10/12
Yes, I am still active on this site and would gladly receive any information you might have.  Thanks!
Shallin
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