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Everything posted by masumeh

  1. Congratulations! "Every day is a tiny piece of forever....best wishes for many happy forevers"
  2. I've taken it before and had no side effects. But I wasn't on meds at that time, and I've never been on steroids. Maybe there was some kind of interaction?
  3. lifting arms over shoulder hieght triggers tachycardia for me. I think I read somewhere on this site that this is a classic POTS thing. Can't remember where. I can do lots of arm exercises, as long as I don't lift them over my shoulders/head. I think my arms are much better off than my legs, probably because they're not overpooled with blood.
  4. Guys have such a hard time figuring out what girls want...poor souls. Seriously, I think that POTS might be a blessing for a guy in terms of filtering out gold-digger women. A friend of my husband was very healthy, etc., and married a woman who robed him blind then left him (within about 3 months). Later that year, he developed a serious chronic illness. His life was in and out of hospitals after that, but he managed to meet a great woman, marry her, and they are coping with his illness together. She pays the bills, keeps cheerfulness in the home, etc. And she's really in love with him. His disease terrifies her, I can tell. SHe's afraid about the future, children, old age, everything down the line. But she's really sincere and committed. That's a lot better than the first wife he had while perfectly healthy. POTS doesn't have to be a negative....but I think it does mean that Mr./Mrs. Right has to be a very special person....isn't that what ppl are looking for anyway though? So good luck to all you singles.
  5. She's a really good gymnist...hope she finds some recovery over time. Thanks for sharing.
  6. Best to consult a doctor, I think. If you don't like one med, a good doctor should know of several other alternatives. By the way, do you always get these reactions to bug bites? My daughter does, and her allergist told us she's actually allergic to bugs! (and every other kind of animal except fish.) We use hydrocortisol cream as soon as possible after a bite, and this minimizes the reaction. Otherwise, it swells like as if some body part is broken! Blood flow even gets disturbed if it's in a digit, and it turns purplish-blue. But it's all just because of the little bite and the corresponding allergic reaction. With the hydrocortisol cream, it all goes away. Maybe it would also work for you....something to ask your doctor about. Hope you find something that works soon
  7. Yeah I used to take these as a child They do taste good, but are for mainly for children/teens. By the way I'm 25 and male. They are made for kids, but adult versions of "complete daily" vitamins are about the same. I'm older than you, and my POTS doc just said "whatever works for you (digestion-wise), they're really all the same". My OB/GYN also prescribed Flintstones for me during pregnancy at age 21 (bc I was overly nauseous, threw up like 20xs per hour)...she said 2 Flintstones are the same as a normal prenatal vitamin (which is yucky, very heavy on the stomach, and everybody hates them). So the content is about the same, and the digestability is much, much better. In general, I found that many things made for kids are simply healthier than things made for adults. They're more gentle.
  8. I use Flintstones. My POTS doc said that all "complete" supplements are pretty much the same, and if I can stomach the candy coated ones better, that's great.
  9. Wow, it must have been such a stressful and painful experience for both your daughter and you. I'm so glad it seems to be coming to an end. Wierd that they couldn't figure out what caused it. She's so lucky to have such a supportive mom! Best wishes for a swift and smooth recovery!
  10. I watched an add for Cymblata a few nights ago, and remembered that you mentioned having severe symptoms after starting and stopping it, though overall (after starting it) you seemed helped by it. The TV add mentioned that Cymblata may cause "blacking out or fainting upon standing". That's so POTS, and it's a really wierd side-effect for a med. Maybe you were pre-disposed somehow to POTS, and the medication brought the disease to the forefront? Good luck finding answers. I hope your appt goes well tomorrow.
  11. Did you find any help with the edema? It sounded really severe, so I'm concerned that you get the medical attention you need. Sounds like (from other replies) it can be helped through diuretics. Were you able to see your doctor?
  12. Hi, and welcome to the forum! There are lots of helpful people here, with many different experiences. I'm sure you'll find support. About your low blood pressure, that's something many of us experience. Midodrine (which is the generic name for ProAmantine, one of the drugs you mentioned) raises blood pressure, so you shouldn't have any problem from that angle. If your doctor prescribed it, it's probably worth a try. I also really hate taking meds, but I was willing to try anything to get my health back. You gotta fight. Natural stuff....try fluids, gatorade...there's a thread on fluid intake and electrolytes somewhere in here. My doc recently told me that my memory might be helped by blueberries, almonds (bad for IBS, however), mushrooms, egg whites, and apple peels (just the peel). But again, I would strongly recommend that you try the medication your doctor prescribed for you. Try them one at a time though, because if you take both at once, you never know which is giving what side effect in case there are problems.
  13. I'm interested in this issue because I read that the autonomic nerves relay signals from the body to the brain and this causes emotional reactions such as fear, humor, sorrow, etc. I realized that I cry a lot less since developing POTS, like if something sad happens. I wonder if this is why.
  14. Is she doing any better now, Randi? She's in our thoughts.
  15. Yey! It's so exciting to hear this kind of good news Woohoo, tell you're sis we're so happy for her My brother's wife is also expecting, and this morning she had an OB/GYN appt and found out she's 1cm dialated! We are getting ready for a big week Hope your sister's pregnancy goes smoothly, and that the baby will be a wonderful addition to the world! Oooo....babies are sooooo cute
  16. Hi! And welcome to the forum I hope you find the support you're looking for here
  17. OK, I think I get it. Sounds like you need this PCP to at least suspect POTS in order to get the recommendation to an ANS center....right? So you really need to avoid that "anxiety" label. Here are some more tips... Attitude: your physician is NOT qualified to diagnose you with an anxiety disorder; that's the job of a psychologist/psychiatrist. So don't let them slip into that mode of discussion. If the pcp starts talking about, "Are you under a lot of stress these days? Do you feel anxious or worried most of the time?" Just say something generic because IT's A TRAP! I was under mega stress at the time I was investigating for POTS, but I would just tell them, "Yeah, of course, everybody has stress. But I'm handling it really well. That's not what I'm here to talk about today." It's true. My stess is not their business. My body is. If I wanted to discuss my stress, I'd go to behavioral health, not a cardio or whatever. Ticks and figits: outward signs of anxiety like leg ticking, finger play, teeth grinding, hair play, etc are all going to push the anxiety label onto the table...which you do not want to happen. Try to abstain from these kinds of behaviors in front of the doctor. Internet searching: reading about diseases on the internet is something doctors generally hate to hear, and it also causes them to suspect hypochondriasis and symptom feigning. You might just ask, "Did you ever hear about Postural Orthostatic Tachycardia Syndrome?" If not, you might just say "I have some friends [i.e. us] who suffer from the disease and we share a lot of strange commonalities, like dizziness when standing, fluctuating heart rate...I just wondered if you had ever heard of the disease. It's generally diagnosed by neuro or cardio specialists, but I thought you might have come across some patients who had POTS before." [General tip: always turn the conversation back onto the doctor's opinion, as another post said, it makes them feel important.] Depressed posture: slouching, sighing, flat tone of voice, avoiding eye contact, poor grooming, and crying are all telltale signs of depression. Try to dress sharply, sit upright, and speak confidently. I'm not saying that anxiety and depression are not real diseases that require real medical attention....but you just need the doctor to focus on the less understood possiblity of POTS, so push the other things out of the discussion for now. If your psychiatric history comes up, just redirect. Like, if the doctor ACTUALLY looks at your records (which I doubt), and then says, "Oh, I see you have a suffered from anxiety and depression in the past. How is that going?" You can just deflect it, like say, "Oh I have a very good psychiatrist who is working with me about that. I'm not here to talk about that today. What I really wanted to talk about is...." That's what I got. I hope these tips and/or other ppls' tips here work for you....If not, you could just straight out say, "I know I have anxiety and depression. But I believe I have POTS as well. What I really need from you is a referral to an ANS center." The pcp will probably comply, even if he/she is incredulous about POTS or your particular case. You deserve to be evaluated by a professional who can rule out or confirm POTS. Proper treatment is like a right, not a favor, in most HMO bill of patient rights.
  18. To me, this revised list sounds much better, much more to the point. It zeros in on the most important features. A small tip: When you talk about your symptoms, don't look worried. Let the doctor do the worrying. I think it's important for you to ask yourself: What exactly do I want out of this appointment? before you go into it. Like, are you looking for a recommendation to a specialist who can diagnose the POTS? Certain tests? Want to form a long term relationship with a supportive doctor who is willing to learn about POTS? Or are you looking for a doctor who already knows about POTS and can help YOU understand it, yourself, and treatment plans better? In my experience, literature goes from your hand to the garbage. All depends on their attitude I guess. Hope you find a good one.
  19. Oddly, when we painted in my place, it didn't bother me. Cleaning solutions, on the other hand, do bother me. I used to faint if I passed the detergent isle in the grocery store. But paint, I do OK.
  20. Did anybody see the POTS clips on YouTube? One got over a thousand views. I think that's great for awareness. Is the DINET documentary on POTS finished yet? Can we put it on YouTube? If you want to check out the clip I mentioned, go to www.youtube.com and search postural orthostatic tachycardia syndrome. There are few homemade type clips availible.
  21. Um, are you on a steroid, by the way? I mean, is this possibly a side effect of a med you've taken?
  22. YOu are absolutely correct. Salt is not for a POTSer with high bp. Everyone's symptoms are unique to their particular damage etc. If you need to flush water out because you are holding it (edema), you need to drink more water and less electrolytes. Ironically, water takes water out for edema. It's dysregulation, not necessarily always deficit. It can be the opposite too. Are you with a doctor who is experienced with POTS? You should really talk to your doctor about this kind of stuff. Although we can share our experiences with each other, each case is different and needs a professional to evaluate and treat according to individual circumstances.
  23. Yes, I get that. I'm not sure it's from the tachy exactly, however. Sometimes I think it's oesophageal spasms...there was a time that it turned from "wierdish discomfort" into really sharp pain, progressively, and I went to a cardiologist suspecting my MVP was going from benign to regurgitating (which it wasn't, no change and incidental finding)...he sent me to a gastroenterologist who induced an oesophageal spasm...I was like, "Yeah, that's the pain exactly" and he prescribed an anti-spasm med, which worked beautifully! I was so relieved. The pain of an oesophageal spasm is described as "cardiac awareness" or "cardiac pain" because the oesophagus and heart are so close to each other. I didn't have any acid problems previous to this, by the way. I think it's another POTS dysfunction. Other chest sensations: palpitations (this is usually brady for me, tachy for some as I've heard in this forum); shortness of breath (why? don't know); tightness.
  24. I don't know anything about fibromyalgia or what it feels like, but heavy legs is soooo POTS to me. I get visual disturbance problems from POTS too....it varies, but something like what you described is pulsating blurriness (that goes in and out with my pulse), which usually precedes an episode for me. Once I start blinking to focus, I know I'm on my way out. Heavy legs is bc of blood pooling. Are you having a lot of tachy, brady, or circulation problems these days? Sorry that it sound like you're having a flare-up. Hope you get through it fast.
  25. That's really horrible. The only thing I can contribute is that my daughter was also ill (not with skin issues, however), and doctors suspected Staph after a positive blood test. BUT then a specialist stepped in and informed us that positive staph results are almost always a lab error. He retested her and found a negative result. He said that the staph gets into the lab from technicians' hands, and its very common to have a false positive, not very common to have a real positive. Maybe you should have her retested, if the it's not meth-resistent yet it is not responding to the meth (not getting any better). Did you test for herpes-related viral infections, such as chicken-pox and stuff like that? Also, the best thing is to find the best doctor you possible can. Is she in a good hospital? You might consider transferring to a better one if she's not getting the right care where she is. Good luck! I hope she feels better soon.
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