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Everything posted by HoudiniCat

  1. I wasn't on it for as long as you've been but when I stopped I had no side effects whatsoever. I also see Dr. Goodkin and he asked me to keep an eye on my BP readings to ensure it didn't get too low again. Thankfully, my BP stayed around a normal level for me and I didn't need to take any more meds. For me, I think those high BP readings was a signal from my body that it was healing itself and I really didn't need to supplement with meds any more. The Florinef was actually doing more harm then good at that point. Good luck.
  2. Count me in too. I was dx?d with POTS back in ?07 and used to get these episodes quite frequently. But its been awhile since I?ve last had one and thought maybe they?d gone for good. Wishful thinking. I just had a really bad one on Sunday. Probably not even as bad as they once were for me but since its been so long since its happened it really freaked me out. The same intense shaky/dizzy feeling you describe with the electrical shock sensation running through your body. And then waves of burning heat starting in my chest and radiating throughout my body. Most times these episodes woul
  3. I've been seeing a cranial osteopath as part of my POTS treatment for several years. It was actually at the request of my regular POTS doc (a cardiologist) who found that integrating the cranial treatments into the overall gameplan was very beneficial to a great deal of his POTS patients. I was skeptical at first but have found it very beneficial. I've been feeling pretty good for the past few months and thought I was finally getting this whole POTS thing somewhat under control. But then - wham - I'm completely dizzy, tachy, blurry vision, shaky, burning/tingling skin - the whole nine ya
  4. I've gotten two distinct kinds. One kind was a "brain zap" from an SSRI withdrawal (and sometimes also from various med) - like an electrical shock in your head. But I think you're referring to the other kind. Where out of nowhere your whole body jerks/jumps. Right before this happens, I usually get a chill up and down my whole body for a second or two before the jolt and sometimes get dizzy right after for a few seconds. Very weird - but I don't know why it happens.
  5. I used to get the numb arms and legs while sleeping frequently when I first got sick and still do every so often. Like you say, its more than just the usual tingling sensations I get throughout the day. Feels like my arms/legs are completely numb, dead-weight and almost disconnected from my body. My POTS doc mentioned that many patients have a marked drop in BP while sleeping and that, while uncomfortable, is not gonna kill you.
  6. I?ve got the same difficulty of being an overly sensitive person too. Any emotion ? either positive or negative ? other than calm and relaxed and it can send my nervous system into overdrive. Since my POTS dx however, it can send me into a full-blown panic attack. At work, it?s the worst because you want to appear professional, in control and not ?sick?. A couple of times I?ve had bad panic attacks at work and during and/or later when I confided in a co-worker, she had no idea I was going thru it while I was going thru it. So on the inside, I?m freaking out and falling apart but on the o
  7. I?m so glad you posted this topic. This happens to me on a regular basis and I hate it. On Tuesday at work, we were all talking about the blizzard that was predicted for the mid-Atlantic US . . . how we would probably be closing the office . . . and everyone was getting giddy about the thought of the day off and shared stories about the big snowstorms when we were kids, etc., etc. A little while later I developed a very fast HR, shakiness, blurred vision, ringing ears, dizziness and was barely able to walk I was so shaky. This lasted all afternoon and evening and it was extremely difficult
  8. I occasionally get this too and it is terrifying. I can usually tell what will trigger an episode or symptoms as well but when the ?panic attack w/o the panic? happens, it usually comes from out of the blue with no warning. My symptoms during my episodes are the same as you describe ? all the while I have a kind of ?detached? feeling, very calm and definitely not panicking. Lying down during this does not help me either. Sipping Gatorade or water may take the edge off a little ? but not much. I think this is one of those things you just have to ride out while breathing and staying calm.
  9. Yes, I get that from time to time too. I get very hot, irritable, disoriented, weak and it?s very similar to that pre-syncope feeling. I could swear I?m going to faint but when I take my BP, its very high and sometimes that feeling doesn?t go away even when I lie down. I had this happen in the ER once too when my BP reading was 148/120 (and its usually low too.) I?m shaky, weak and exhausted for hours (sometimes a whole day) after these episodes. I do believe its an adrenaline surge that some of us POTSies get from time to time but I would mention it to your doc.
  10. Me too. Sometimes laying down doesn't aleviate all the symptoms. I've felt dizzy, foggy, exhausted - all while laying down. I get that disoriented feeling upon waking frequently. Feels like you're trying to wake up from anesthesia. Horrible!
  11. Don't know if this may help but just throwing it out there. When I first got dx'd, my POTS docs suggested I compliment his treatment with cranial osteopathy. On my first exam withe the osteopath, he mentions that my vagus nerve was a mess and that would be where he would begin treatments. Went to him faithfully for over a year, in addition to my regular POTS doc, and most of my symptoms are now greatly reduced. Hope you're feeling better soon.
  12. I used to get this all the time and it was one of, if not my most bothersome symptom. Nothing to do but lie down and put cool cloths on my head, neck to make it subside a little. Of course, then I would sometimes go into a fit of shiverring and teeth chattering. Also used these things - Cool-danas - that I got at the sporting goods store - bandanas that you wet/freeze that you wear around your head/neck, especially in summer. I also sometimes put cool, wet teabags over my eyes and put pressure on them. That used to be a quick fix for puffy eyes that I'd used before and remembered that it
  13. Yes, the scrolling text on the tv gets me sometimes as does standing up too fast or turning my head too fast. Or just looking up at the sky or walking across a patterned carpet (or past a fence). Or scrolling on the computer/iPhone. It stinks! Totally a POTS thing for me.
  14. I used natural remedies to transition from the regular meds (with both the skepticism and blessing of my POTS doc) and they seemed to have worked for me. I took a combo of supplements - the only one on your list that I used was the CoQ10. CoQ10 claims to enhance the pumping action of the heart, output of blood, speed of heart muscle contraction and general cardiac efficiency. It also may also take the edge off fatigue. No experience with any others you listed.
  15. When I was first dx?d with POTS, I had a similar experience where the meds kind of helped the BP and HR issues yet I was still dizzy all the time. My doc always wanted me to try and stay on meds for 3 months to see if they were helping at all (unless I had a bad reaction then we stopped sooner). For me it was over a year (maybe even closer to two years) that I would still get waves of bad days and even new symptoms popping up before things started to even out.
  16. I see Dr. Goodkin as well and took his advice and began seeing a cranial osteopath early on in my treatment. I felt the cranial manipulations were an important part of my recovery and a perfect compliment to the traditional meds route. Even though its not chiropractic, that?s the best way I can describe it . . . its like chiropractic for the head. The osteopath gently works on your head to work out any ?knots? that would be obstructing your nerve ways and blood flow resulting in a more balanced HR and BP and hopefully lessening (or eliminating) numerous other complaints shared by POTS peop
  17. I used to get this all the time early on and it was one of my most bothersome symptoms. It felt like I had a really bad sunburn and at its worse, I felt like the blood in my veins was actually on fire. Also numbness and tingling in my hands, legs, etc. It could happen anywhere on my body but mostly showed up on my face, neck and chest. My POTS doc said that although the HOTS was not one of the symptoms shared by most of his patients, that he had seen it quite often. I tried Klonopin and Lexipro for it but they really didn?t do too much to alleviate it. Nothing to do but lie down and put
  18. I?m one of those who just hate, hate, hate any type of meds and always thought I could cure whatever was ailing me with natural remedies, diet, exercise, etc. When those didn?t work for my POTS, I had to start trying meds and found my best combo was Toprol and Klonopin. I used to drive my doc nuts because I would stop taking them too soon and not see much improvement in my symptoms but then again, there was no great improvement while taking them either. After about a year, I slowly switched from the meds to more of the natural remedies and that seemed to work for me. I also got the killer
  19. I can sympathize with you Lissy. When I first got sick and then finally got a POTS dx, I was convinced that it was not just POTS alone ? that there had to be something else wrong to be causing all these symptoms. And then to have docs kinda dismiss you, write a script and send you on your way was just amazing. Once an ER doc (who was looking up POTS on his computer) was asking me about the different docs/tests/meds I was on and was getting so confused. Finally he questioned that if all the docs I see were like players on a football team, then who was the head coach . . . who was in charge
  20. I too get this from time to time and for no apparent reason. You can understand it if you?ve been on your feet for a long time, climbing stairs or generally over-doing it. But when you?re just sitting at a computer and typing or relaxing and watching tv and it happens, its puzzling. When this happens, I just have to take a few minutes, try to relax and count my breaths till it passes. After years of this, I know its not actually going to suffocate me and kill me (although it sometimes still feels that way). Just another really annoying POTS symptom to deal with.
  21. I had crazy panic and anxiety when I was coming off Lexapro and then Klonopin ? and then the alarming brain zaps kicked in ? but I didn?t have the kind of pain you are describing. Coming off these drugs was one of the hardest things I?ve ever done in my life and for most people it takes weeks and months of tapering down to get through it with the least amount of problems. I?d call my doc and discuss if you?re not feeling better. You can tell the difference between ?horrible and uncomfortable but I can see the light at the end of the tunnel? and ?there?s absolutely no way I can survive this
  22. This was one of my first symptoms. I'd be sound asleep and then woken up by my heart running like a freight train for apparently no reason. My POTS doc likes to say 'that's what puts the P in POTS'. While many POTSies would get tachy going from sitting to standing, I would get it just from changing positions while sleeping. It got so that I actually had to sleep with one eye open to remain in one position and not roll over/around during the night to get any kind of sleep at all.
  23. I?ve had every symptom you mention. When first dx?d, I would get this 24/7. Now, it?s been almost 3 years and it feels like its subsiding. Still, at least once a week or so I get that ?drunk? feeling ? the kind of light-headed and floaty, out-of-balance feeling. Almost always still get this sensation in the supermarket ? between crowds, florescent lights, loading and pushing the cart around, etc. ? I know this brings it on for me. Changes in weather, stress, and the ever popular ?no-reason-at-all? also bring it on. Vision and hearing go crazy. Hard to keep things in focus (doubly so if in
  24. I think it?s a slow journey for most of us ? this POTS thing. Dr. G. tweaked my meds several times throughout years of treatment. Looking back now I can honestly say that I really didn?t give some of them a chance (some prescriptions I filled and didn?t even try). But if you stick with the cranial osteopathy, I think you?ll find that is a unique kind of ?feeling bad? that you?ll be able to equate with the treatments as opposed to a different kind of ?feeling bad? that may be from new meds. Hope that makes sense. I?ve really learned to listen to my body now though and can tell when a me
  25. In the beginning, I had the same experience of feeling worse after each treatment. When I would first stand up after treatment I felt like I was totally drunk. Would sleep in the car the whole ride home. And always scheduled my appts. for Thursdays so I could take Fridays off (plus weekends) to rest. I only went once a month as I felt it would take me days to recover and then a few weeks to get the full effects of the therapy. I know some people who?ve felt significantly better after 2-3 treatments but honestly, it was a slow process for me. My family was very skeptical and swore he was
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