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lumpchp

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About lumpchp

  • Rank
    Advanced Member
  • Birthday 09/26/1979

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  • Gender
    Female
  • Location
    Oregon
  • Interests
    My kids, crochet, snorkeling, outdoors

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670 profile views
  1. I was in the hospital recently (long story), and was hooked up to a heart rhythm monitor. While I was sleeping, several doctors rushed in and woke me up to do an ekg because they said I had been having runs of v tach. I was sleeping, so the only thing I felt was a little freaked out when they woke me up. Now they wasn't to put me on a beta blocker. I'm scared to go on one due to.my bp being really low lately. Anyone know what would cause this?
  2. Like doozlygirl said, the folks at EDNF are great :-)
  3. Ok, I finally had a ttt. I'm very concerned though that they missed a lot of my worst symptoms. 1. There was only one tech 2. I was laying down for an hour before the test 3. I was only tilted for 5 minutes... I was completely relaxed, and just as my hr started to rise, brought down and the tech said that I was done because they only tilt for 5 minutes. 4. That was it, I was sent on my way. I'm super frustrated, I feel that so much was missed. For one, I went in the middle of the day, after the worst of my symptoms. I'm worried now that I'll be told that everything was normal, when I know its not.
  4. There are several subtypes of Ehlers danlos, I believe a blood test can only diagnose the vascular type... Otherwise it is based on clinical findings and family history.
  5. I tried it once when I was symptomatic for days. I took half, because I'm also super sensitive and leery of that type of medication. All I can say, is I'm glad my hubby was home, cuz it made me VERY relaxed. I slept great lol. Honestly though, I don't think it made my bp any, lower, I think it just relaxed me, so naturally my bp and heart rate stayed low, since I was not crazy anxious anymore. Start small... It sounds like you could use some tlc... Try a half, run a bath, watch a sad movie. We forget that along with all that life throws at us, we deserve a little peace every now and then. I'll send you some calming Pacific NW rain vibes :-) Its really pouring...
  6. I've always been low too, but since after I had my son, all the dysautonomia symptoms came out, and what happens is I'll have a pots episode,(bp drops, hr increase on standing) then later after I recover, my bp goes really high sitting down. my cardiologist says it's not common with dysautonomia to have the orthostatic hypotension and concurrent supine hypertension, and it's difficult to treat. Is yours high after an episode, or more random? Are you checking sitting and standing?
  7. You should add a ? about our resting rate... Mine is around 60, its just so crazy that we can actually double our rates just from standing...
  8. I think some of us, myself included have these kinds of palpitation issues directly related to our breathing. There was a post not too long ago about how many of us struggle with singing. When I had my first exam by a Neuro, he had me on a heart rhythm monitor, and had me breath normally, then hold my breath... And I was instantly thrown in to svt arrythmia, which returned to normal once I started breathing normally again. He repeated this several times, and it happened every time. I was dazed and felt awful after, and unfortunately I don't recall what his explanation was. I'm going in tomorrow for a full series of autonomic tests, and I know one of them involves this type of breathing thing, so I'll report back what I find out.
  9. Glad you found this post and got it going again. I was ok during my first, actually bp was too low, and I got dizzy, lightheaded alot. I went in to spontaneous preterm labor at 29 weeks, and was put on meds and strict bed rest the remainder. 6 years later, after 2 miscarriages , I got pregnant, and again had low bp. This time was different though, so much worse. I kept passing out, just felt terrible every second. Worse than that though was postpartum up till now, I really think this last one broke me somehow. I never had the high blood pressure, but man was the labor fast when it came. I was on pitocin for 6 hours-and stayed dilated at 1, then literally within minutes my son was born. Same scenario with both. Not sure it helps with your question... I just know that pregnancy either caused my dysautonomia, or really turned up the volume...
  10. Strange, I believe mine was also pregnancy induced, or at least that's what tipped the scale. I get the same feeling, but until you said gravity, I never found the right word. I'm in the Pacific Northwest, so maybe it does have something to do with low pressure, humidity... I know there is some higher instances of ms here, but it would be interesting to relate some dysautonomia issues as well. I really tend to get worse when the weather gets bad, which as you know, is almost all the time here lol. Not sure if it helps, but at least you know there is someone who understands...hopefully you get a break from all the rain, I could sure use one :-)
  11. Does anyone else get bad throbbing headaches? Its been happening alot lately. Wake in the morning, and I'm totally fine until my head gets above heart level... Then stops when I put my head down. I've read a little, and seems it could be related to eds and/or low csf? Of course like many other strange symptoms, could be a potsy thing too I guess.
  12. That's the thing, I have noticed them being unequal off and on for a while... Today after a bad pots spell, they both dilated and did not constrict when I shined light... Just another oddity I guess :-)
  13. Ok, I have noticed that one pupil gets real big occasionally. This only mildly concerns me. The thing is, I just happened to be in the bathroom, had bent over the tub, and had a really bad pots spell when I came up. I don't really know what prompted me to do this, but I looked in the mirror after I got myself together, and all I could see was the black of my eyes they were so dilated. I did a cover test, and neither pupil reacted at all, meaning they did not constrict. Sooo strange... After a while, things went back to normal. Now I have had bad symptoms since, and sure enough, my eyes keep doing it every time I get a potsy feeling. Hmm, anyone else happen to notice their eyes do this after???
  14. Ok, I hadn't heard this, but it totally explains why lately I get that potsy feeling when I try to sing my son a lullaby... I knew I felt odd when the doctor had me hold my breath too, just didn't understand why.
  15. I was also tested for pheo before pots, it produces adrenaline surges similar to hyper pots. I think that's why they sometimes check blood metanephrine and normetanephrine levels when sitting, then standing during some autonomic evaluations.
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