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abbyw

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Everything posted by abbyw

  1. I have always had irregualr periods, and I don't think it was related to my POTS - my POTS just started this year. (I am 37 now.) I also would not worry about it at all. I was able to have plenty of kids.
  2. I also go to sleep feeling fine and wake up feeling like I have tightness in myc hest and that tensed up/ frightened type feeling. It is awful to wake up all jittery in the morning. I feel like I want to go abck to sleep until it all goes away, but I am too wound up. I find that forcing myself to get up and going for a brief walk actually calms things down, as if forcing my body to be in the same state as my heart rate evens things out. I am sure that doesn't make any sense, but when I get back from my walk and after a brief recovery period, my body seems to get somewhat back to normal. Like Dani and Lemons, the Lexapro (also an SSRI) seems to be helping this,although not completely.
  3. I am going to the doctor tomorrow and I will ask for an ANA test. I see that I haven't had one. If it is positive, does knowing that it is autoimmune help somehow?
  4. Well, he claimed that because my resting heart rate was in the 60's, even if it went up 30 points, I am not POTSy - that POTSy people's resting heart rate is much highter. And, ramakentesh - I did feel pretty patronized being a woman. Like I said, he asked me how much help I had with the housework as a mother of lots of kids. As Julie pointed out, the housework and the kids are, thankfully! there every day.....I think they are what keeps me going.(Well, not the housework so much ) Again, I just don't know....yes, I have a stressful like, who doesn't?...but if my symptoms say POTS, why would he call it stress?
  5. Thanks, Julie, that's an interesting idea. I tried looking up autoimmune on wikipedia, but it was too compliacated for me How would I know if this is the source of my POTS symptoms or the swollen glands? From what I read, it is an interesting theory, my body has been through a lot of wierd things in the last year and half, and it would be nice if I could wrap it all up with one neat explanation. Right after I had a baby a ear and a half ago, I had crazy dental problems that noone could explain - the inflammation and infection spread from tooth to tooth and I ended up with 3 extractions! I went to the best specialists, and noone could explain it. Then, my IBS went crazy for around a year, and now the POTS symptoms. It all seems so unrelated, but if we could say that the inflamamtion is a AI response, would that make it all fit? On the other hand, I was sort of hoping that the swollen glands meant that I had a viral based POTS and that one day, it will just go away.....
  6. We have the opposite! I am beating myself up that I got sick because I can't handle my stress well enough. I feel completely inadequate and at a loss - why can't I just take life more easily. He says that I am doing eveything I can do and I should just accept things the way they are. I feel bad that he has taken over so much that I used to do. I feel like maybe I should push myself more. He doesn't understand why I feel that way. I am really lucky that he is so supportive, but I also feel not understood. I don't think he understands how frustrated I feel! Which makes me feel more alone - physically (he can't understand how I feel) and emotionally ( he is so laid back that he doesn't understand how I feel). I realize that this was totally not helpful to you - you were looking for advice and I told you I have no idea how to help BUt maybe it helps to hear that we are sort of in the same boat.
  7. The guy who told me it was all stress also told me I was hyperventilating without realizing it. I asked him how come I never had that problem before - suddenly one day you start hyperventilating? He didn't really have a good answer for that......
  8. Hi, I seem to have chronic swollen glands in my neck. Could this be related to my POTS symptoms? Most of the time, they don't hurt, but once in a while, I get a day where my ear and neck hurt on one side. I seem to think that the swollen glands came at around the time my POTS symptoms did. They have not gone away - it's been a little over 2 months. Thanks for the help!
  9. I really appreciate allof your support. It's so nice to feel understood. I think that keeping a journal is a good idea, and I am going to try that. He did say to get back to him in two months, so if I am still symptomatic, I will have good evidence for him. They have been so supportive at work, letting me work from home for as long as I need. I keep thinking about going in to the office, but I am worried that I won't feel well and I'll be 1.5 hours from home...but I digress..... I hear what you are saying, ramakentesh, about crashing AFTER the stress, I have always done that in life, pushing through the hard times and then feeling it after. It could be that that is happening here, but again, I never had any of these symptoms before and I think that the physical symptoms HAVE to be caused by something going on in my body - the question is .. WHAT?
  10. No, he only did the poor man's tilt table. Took my BP and pulse a few times lying down and then once after standing for 3 minutes. Also based it on the fact that my dizziness can happen at any time, not necessarily when going from lying to standing, and I don't have cold extremities.
  11. I feel like I should clarify. He based his "stress" diagnosis on the fact that I have a lot of kids (which totally shocked him, as he has 2) and I work outside the home. So a working mom + lots of kids must mean stress. He asked me if I had help with the kids or with the house. I told him that my husband is a big help, and he laughed that off, and kept talking about stress and anxiety. Now, I have always been a high -intensity type of person. I tend to be hard on myself and demand a lot from myself, but there has been no intensely stressful event in my life lately (thank G-d!). I was so frustrated that he was looking at my life and assuming it was stressful and ignoring the fact that I was on meds which could affect the results. I lived 37 years without feeling faint from strolling down the block. It is hard to believe that one day, my intense personality causes that! My GP also tried "You seem to be a sensitive person. I think you just have to be careful about eating regularly and not overdoing it." Since when is walking one block overdoing it? Again, sorry for the rant...... but this is all so new to me and suddenly I have these wierd symptoms where I am doing my own research and coming up with my own diagnosis, and doctors have never heard of it, and I am just hoping it will all disappear.
  12. I got into the only autonomic disorder doctor in my area. He listened to my symptoms and claimed that I have too much stress in my life. I pointed out that my sumptoms started from one day to the next when nothing had changed in my life and he maintains that it is a stress buildup. I think he was basing his diagnosis on the fact that my pulse did not shoot up during his examination. I pointed out that I have been taking Lexapro for a few weeks, and couldn't that skew the results? He agreed that it could but still maintained that it is not POTS, Now, before I started taking the Lexapro, my pulse was consistently going up more than 30 points after standing. At the same time, I developed exercise intolerance from one day to the next and anxiety symptoms without any anxious thoughts. I was dizzy several times a day and had severall near fainting episodes, which I never had before. I don't believe that all of that happens from one day to the next because of stress that has not changed for years. I know that having a doctor confirm a diagnosis does not really make a difference. I am continuing with the Lexapro, drinking a lot, adding salt, and trying to exercise a little bit every day. Practically, there is nothing else I can do. Some days are better than others, I have to be careful not to overdo, and that's it. But it was very disappointing to be told it is all psychological. I feel very invalidated. Thanks for listening......
  13. I am new to this, (2 months) but I really relate. Every time I have a good day, I think "Oh, that was just a bad patch, and now I'm on the uphill", only to have a few bad days. I am having a hard time staying positive. Maybe that is normal for the beginning, but I keep feeling that I should be taking this more in stride.
  14. Thanks. My stomach symptoms have actually been better since this whole thing started. I sort of have the feeling that one hardship replaced another What do you mean by there being a viral link? I can't imagine that there is anything that can be done for that,
  15. Thanks for your replies. I tested negative for celiac in blood tests. Do those of you who stay off gluten do so becasue you have celiac or even though you didn't test positive for it? How long were you off of gluten before you saw a difference? ( I tried going off for 3 days, and it didn't help). Does it sound to you like I can be pretty sure that I have POTS?
  16. Hi, I am new here. I have been following your site for a few weeks and I really appreciate all of the information. Here's my story. I am a 37 year old female. Always considered healthy, even though I always felt that I was a "weak" type. I couldn't do vigorous exercise and couldn't do "too much" in one day, but other than that, I was fine. I have had IBS for around six years. Around a year ago, I started having near fainting along with my stomach attacks. Then, I started new meds for my IBS, which were starting to work. In mid November (2 months ago), I had dental implants done, and I needed to take antibiotics. This, of course, made my stomach worse and I started having bouts of dizziness. That week, I got up once in the middle of the night to get a drink from the kitchen, and I fainted. I thought it must be that I was about to have a stomach attack, but I didn't, and we chalked it up to a random thing. That same week, when I went for my normal morning brisk walk, I came home and nearly fainted again, but I did not faint. Since then, I get this dizzy feeling several times a day. I can get it standing or sitting. It is not always associated with standing up. Someone mentioned orthistatic hypotension, so I stareted measuring my BP sitting and then 3-4 minutes after standing. There is consistently a significant rise in my pulse rate after standing ( from around 60 to around 90). My BP does not seem to be that affected. I have also been cold - so cold no matter how many layers I wear, and I have this feeling like I am "jittery" or nervous inside. My dr. told me that it is probably anxiety. I told her that I was not thinking any anxious thoughts, I just feel anxious. but she prescribed Lexapro anyway. I researched OH,and discovered POTS. I felt like that explained everything. IT even ties in with the fact that I have never been able to tolerate novacain shots at the dentist, as that contains epinephrine, That has always made me feel as if my heart is pounding and I am going to faint. My dr. had never heard of it, but she was open minded enough to look into it. Meanwhile, I have been increasing my fluid and salt intake and I have been taking the Lexapro for 4 weeks now. ( The first 2 weeks on Lexapro were awful, but then I thought I was starting to stablize.) Last week I thought I was seeing major improvement, and I was accredditing the Lexapro and I went walking every morning (slowly) for 15-20 minutes and then actually ran some errands each day. But on the 3rd day in a row, I crashed, and then I was basically in bed for 3 days, I felt like I couldn't pick up my head. I still haven't recovered completely. The question is, is there any reason for me to get an actual diagnosis - go for tilt table and other testing? (There are no facilities in my area that have a tilt table.) Or if I am doing everything that can be done anyway, should I just continue and the actual diagnosis is not really necessary? Also, are there really people who just have this for a few months? I have only had this for 2 months (which has been enough, thank you,) but I read somewhere that you need to have the symptoms for 6 months for a diagnosis. Is that correct? I appreciate your listening, and being my unofficial doctors, until I find one.
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