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turtlefairy5

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Everything posted by turtlefairy5

  1. I have bipolar depression with accompanying anxiety issues. I have had my POTS symptoms brushed aside as anxiety. Amber
  2. Hey guys, I might've asked this one before. Does anyone out there take a sleep aid such as Ambien on a regular basis (herbal supplements excluded)? Has your doctor been willing to prescribe the drug on a regular basis? Have you noticed if it worsened your other symptoms, specifically the tachycardia? Do you feel groggy or tired the next morning or the next day? Second, a while back I remember someone on here implied that carbohydrates, too many, made their symptoms worse. Is this true for anyone else? One of my other medications causes carbohydrate cravings and I'm wondering if eating carbs is contributing to or worsening my symptoms. Thanks, Amber
  3. I believe that mine started with a virus that I had during the fall of 2005. I was incredibly sick, and had the worst lower back pain that I had ever had in my life. It was incessant, aching, throbbing pain. I tried Tylenol, Advil, Aleve. Nothing touched it. My vision dimmed, it felt like I was looking through sunglasses, I couldn't make out details, and this lasted even after I had otherwise started to feel better. It worsened when I was in a room (a store, my classroom) with florescent light. I believe that there was damage to my spinal cord. A nurse at the office of the neuro-opthamologist I saw said that my vision problem was due to the virus, and that the virus remained in my system even after I felt better, that the fluid in/around my spinal cord increased and put pressure on my spinal cord which caused the vision problems, and that once this was relieved, my vision would return and I would feel better, it would just take time, there was nothing they could do. A few months after that, I got pneumonia, then just about every cold that came my way. I was often exhausted, and because of that, irritable. I went through a heavy episode of depression the next school year, and left my position as a teacher. Over the summer, with less stress, I felt better, but had scary episodes of sudden fatigue often. I tried again to teach, at a different school, but again caught every cold and virus that came my way and again, was very irritable and stressed because of the constant colds and exhaustion. In February of last year, I landed in the ER for the first time with a heart rate in the 190's. In March, I resigned from my teaching position. Later that month, I was in the ER again. Getting my diagnosis was a long and twisted road, and would've never happened had my therapist, who has no medical background what so ever, but does have Mitral Valve Prolapse, suggested what is a poor man's tilt table test. In any case, since my diagnosis, I have come to believe that I've had dysautonomia for years as a result of that virus. Amber
  4. I have no idea but I hope you get this figured out soon and get some peace about it. Amber
  5. There have been many times when I have felt really bad and have checked my heartrate only to see that it is perfectly normal. Confusing. I agree with others here that our bodies are more generally out of whack with Dysautonomia, and while sometimes our heartrates reflect/cause it, sometimes we just feel awful without any bells and whistles going off. Amber
  6. I'm sorry that you weren't able to do something you really wanted to do. It is a horrible catch-22 that you actually have the motivation to do something to make you feel better - emotionally, spiritually, etc. - but find that you cannot do it. You get all your stuff together, you put your gardening clothes on, you envision what it's going to be like, look forward to it, and then......splat!, you're struck down. It is hugely depressing, disappointing, maddening. It is such a simple thing to do, something others take for granted. Yet another thing that you can't do that others look at you and can't believe, think you're weak, lazy, more mentally ill than physically ill, trying to get attention, etc., because "but-you-don't-look/act-sick," right? If they only knew. If they could only wear your gardening shoes for a few seconds. It's not like you're trying to run a marathon, you're just trying to do one tiny thing. This may sound stupid, but if you can't garden, ****, I say take a chair outside, put in the middle of your yard, and appreciate the weeds! Think of them as the underdogs of the gardening world. They never get any love. Amber
  7. As for the burning in your throat/ears, that sounds a lot like GERD to me. I felt/feel the same way with GERD. Expecially when I wake up in the morning. Your throat feels hot, your ear tubes like they're burning. I know. Good luck, Amber
  8. Like you, I woke up one morning feeling like crap. I tried to go into work, but ended up in my mom's apartment, collapsed on the couch. I went to the doctor later that day, and after they checked my fever and my heartrate, they called an ambulance to pick me up. In the ambulance, the EMT kept telling me that if I didn't "calm down" I would go into cardiac arrest. He called in to the hopsital that he couldn't even start an IV on me. Like you, a nurse at the hospital was shocked that I had such a high heart rate and was still conscious. She called in a student to feel my pulse. He sort of smiled at her like "Wow! So that's what a heart rate in the 180's feels like!" Like you, they did all sorts of tests on me and found nothing. Like you, I begged to go home. A couple months later, I ended up in the ER again. This time the ER physician (different hospital) put me on Metoprolol ER 25mg and referred me to a cardiologist. At first, the cardiologist found nothing. Then my therapist, who has no medical training at all, but does have MVP, suggested that I have my doctor take my blood pressure and heart rate laying down, sitting up, then standing up (the poor man's tilt table test). I asked my general practitioner to do the test, which she did, and referred me to the cardiologist again with those results. They performed the test again at his office, at which point he diagnosed points. In between all this was a lot of stress, a lot of anxiety, a lot of fear, a lot of fatigue, and a job loss, etc. I have GERD too, and currently I am taking Metoprolol ER 25mg once daily and Aciphex 20mg twice daily. Recently, I've increased my activity level and have been pleasantly surprised with what I CAN do. I hope you find a lot of help and encouragement here, and that you feel better soon, Amber
  9. yeah, I completely lost my period on Risperdal!
  10. I've tried 3 different AAP's, Seroquel has been the best for me so far. I was on Zyprexa for several months, and did not have the physical sensation of emptiness as you describe, but more of an emotional, loss of soul emptiness. Also, sugar cravings. You seem to indicate that the Zyprexa is holding the Zoloft down, or counteracting some aspects of the Zoloft - in what respect? Has the Zoloft been too activating? If so, you may want to reconsider your diagnosis. (SSRI "activation" is how I found out I'm a beeper (BiPolar). Not trying to diagnose you, just giving food for thought. And I have heard that Zoloft is notorious for the stopping of the pooping. Could fiber supplements help at all? In any case, if you are having side effects with either med to the point that you find yourself needing to start and stop, I would suggest that you get thyself post haste to your nearest doctor/psychiatrist/something. It shouldn't be that way. I can tell you that I do know what it is like to deal with both a physical and mental illness, FWIW. hope you feel better soon, Amber
  11. Hey again, I can't completely chalk up my fear of the Florinef to what I've read here on the boards. I should have noted that I'm fearful of drugs, any drugs, to start with. Between POTS and my bipolar disorder, I take a lot of drugs (not as many as others here), and I worry about interactions and long term effects, etc. What I'm noticing here is that Florinef tends to really help those that are at an extremely bad place, i.e. someone here mentioned barely able to lift their head off the pillow? I'm pretty highly functioning, and I'm wondering of Florinef would be called for in my case. Also, I'm noticing that it seems to affect blood pressure, and blood pressure has never been my issue - it remains the same standing or sitting, it's only the heart rate that goes nuts. Anyhoot, I'm still skeered of the Florinef, and questioning whether or not I need it, but wanted to make sure that the forum here didn't get any blame for it. Thanks! Amber
  12. As a beeper myself, this does smell a little of BiPolar disorder, though I don't want to chalk up your partner's abhorent behavior to a mental illness. He's still responsible for his actions. Also, I get the idea that if you suggested a psychiatrist to him, he wouldn't be too happy. I recognize that you don't feel like you can leave right now, but what you can do is start building up resources (money, friends, etc. support) with the idea of leaving or at least becoming more independent so you have the option if you want it. Take care of YOURSELF, Amber
  13. My cardiologist prescribed .1mg twice daily, I believe, which, after reading posts here, I was uncomfortable with. Definitly struck a blow to my trust of the cardiologist. Whatever your ultimate dose, I think it is best to start really, really small and build up to a bigger dose, stopping at the point that it has a positive affect. I freaked out about the potassium blood work and side effects. I took one dose a couple of times, but ultimately couldn't get over my anxiety of taking it. Amber
  14. Hi, Admittedly, I sort of scanned over this thread, but I just wanted to share something that I've been thinking recently. My cardiologist okay'd me for exercise as well which, in the past for me, has meant going for walks. I still would like to try walking occasionally, more to curb weight gain than anything else, but recently I have thought that building up my muscle mass might help, as I think your doctor suggested. So for the past couple of days I've started with my arms (though starting with your legs might make sense what with the blood pooling associated with POTS). I have little five pound weights, and I do bicep curls, then put it behind my back and lift it up straight above my head (this might be a problem for those who get potsy when they put their arms above their heads). I just wanted to put in a suggestion that instead of trying more cardio activities, you try some weight lifting to build muscle mass. Nothing too heavy or strenuous of course, but it might help. Amber
  15. Not only a wicked sense of humor, but creative!
  16. Thanks everyone! All of your suggestions/comments sound very sensible. My BB is extended release, so I don't that the time I take it matters or if it is wearing off. I still have my wrist watch monitor which I check from time to time, but much less when I used to. I've become a lot less freaked out about. And it's good to know that diarrhea can be a ANS function issue. Thanks again, Amber
  17. Hi, So I've been more active lately, and I've been pleasantly surprised to find that I can do a lot more than I thought I could do. When I do feel bad, I've realized that if I rest for a while (like an hour to two or three hours) I will eventually feel better, maybe even able to resume activity. Today, in fact, I went to a local park and walked around the path. I haven't walked this far in quite some time, and it felt great to be able to do that, and the weather was warm, but not too hot, so I was loving it. I got tired toward the end, checked my heart rate, and was surprised to find that it was 109, not into the 150's or 160's like I was expecting from experience. I was really shocked. Here's the confusing thing - later, when I got home, and sat down, I checked again, and it was 123, higher than it was when I was at the tail end of a rather long walk out in the warm weather..... Huh?? Then later, I sat outside in the sun. I checked my heart rate and it was 153!! Sitting down! I know that heat tends to make our symptoms, especially tachycardia worse, but I didn't know that it could make it that bad even when you're sitting down. Also, for the rest of the day since my walk and sitting out in the sun for a little bit (like 5 - 10 minutes), my bowels have been all but liquid. I do tend to have pretty immediate diarrhea when I am out in the heat for even short amounts of time, but for the whole rest of the day? If anyboy has any insight/advice/explanations/empathy please let me have it! Thanks, Amber
  18. Okay, I'm not trying to make light of this, I have missed dancing, too, or any fun activity really, but...... has anybody noticed that, technically, the subject of this thread is...Poll: dancing...."poll dancing"...? Amber
  19. Congratulations on your victory!! Amber
  20. Pull an Ellen and bring a bed to lay down in while you give your testimony! That'll show the little ********. Amber
  21. Here's how mentally challenged I am - when I read the subject line and description under the "view new posts" I always click on, I thought, "hmmm, who's Dr. Miney and Dr. Moe? Wonder where they're practicing....Mayo?...I hear about Dr. Grubb here but never these Miney and Moe people..." It wasn't until I read through the post (a second time) that I realized.... Amber
  22. Okay, this scares the heck out of me. I'm on Metoprolol ER 25mg. When I had my 24-hour monitor done, I did notice a lower heart rate at night, I think around 50's. I've been on Metoprolol ER for a long while and have been okay so far as know ???, though I have no idea what my heart rate is at night. This is really freaking me out. If I did just a regular morning dose, though, how fast would it wear off? Would it last all day and be out of my system at night? Maybe this BB is why I've had trouble with insomnia as well, though to be fair I've struggled with insomnia for years and years. I take an anti-psychotic that helps me sleep. Amber
  23. Thanks, ya'll! I feel encouraged. It's good to know that nothing serious will necessarily happen, that I can always slow down and my heart rate will get back to normal. And yes, I am taking a beta blocker - Metoprolol 25mg (they got the generic back in!). Last time I saw cardiologist, he said he didn't want to increase BB because it might make me tired. I was at 50mg at one point, and I never was sure if it was the BB making me tired or just POTS making me tired. I'm pretty much tired most of the time. I'm also considering the Tumerin, but waiting until we get more people reporting their results. thanks! Amber
  24. Okay, this is sort of a follow-up to the thread where I spoke about how my mom is worn out taking care of me. So I've been taking on more stuff like trying to fix or go get my meals. Mom is still helping because sometimes I am just too sick and exhausted, but I'm doing more than I used to. Since then, I've noticed that my heartrate tends to go up higher - when I'm standing, up around doing stuff, and when I'm sitting. It can be, not always, around 90 or 100 when I'm sitting. It goes down eventually. It's in the 114 - 120 range when I'm standing, and can get to the 150 - 170 range when I'm up and about. So then, I'm wondering when I should get worried and stop whatever I'm doing. I can definitly feel it when I'm in the 150 - 170 range, fatigued, anxious, sick, but if I can push on, should I? Or stop at that point? Or should I even stop when it's lower than that, in the 120 - 140 range? (If I did that I wouldn't be able to do hardly anything, I'd be back at bed rest.) Okay, in summary, I've noticed that all around my heartrate is higher since I've increased activity, and I'm wondering if this is going to make things worse and cause me to have a bad episode and collapse for a while, or if I push through it I might actually see that I can increase my activity over time, even go back to work maybe??? Please note that previous to this I spent most of my time laying on the couch, pretty much in a state of bed rest except for one outing during the day or evening each day (meetings and appts.). I know ya'll aren't doctors, but any advice would be appreciated! Thanks! Amber
  25. That's a question I've had too, whether I should see a cardiologist or neurologist or both. As I find out more about this syndrome, I'm learning that it's sort of a ? --> Dysautonomia --> POTS ; that POTS is a symptom of Dysautonomia and Dysautonomia is caused by something that sometimes can, after loads of testing, be figured out. Here's the 1,000 $ question: How important is it to go through all the testing and searching to find out what is causing the Dysautonomia? This thing is confusing. I tell people I have POTS, then I tell them I have Dysautonomia, or have both, or I try to explain it to them, and my confusion and different labels lends a sort of absence of credibility to me - it makes me out to be suspect as a hypochondriac. Anyhoot, sorry to take this off topic! Amber
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