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xRobin

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About xRobin

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  1. Hey everyone!! I hope Thanksgiving is going well for all! I am primarily an ME/CFS patient who went on to acquire comorbid POTS. It's difficult for me to understand where one ends and the other begins because the symptoms often overlap. However, since developing POTS I have the blood pooling and other standing up stuff that I didn't have much of before. I try to be upright and active as much as possible, though I'm always running into the ME/CFS symptom of "post exertional malaise" so I've never been successful with exercise. Even a minute of recumbent bike or bed exercise knocks me back for days and pushing through it has only led to significant worsening of symptoms. I keep trying because it's good for POTS so but far haven't figured out how to do much more than my bed yoga. Lately I've been having a flare up. My POTS symptoms are worse, and I tire out after only a minute or two of standing. I had to sit down brushing my teeth the other day. My worst symptom is intense muscle pain. I feel like I've been beaten up, or in a car accident. I can't stand it, and getting up and moving around makes it much worse. Is this a POTS thing? I've had some very extensive medical work ups but am limited to what I can do locally. I just had a skin test for small fiber neuropathy, and I've consulted with Dr. Blitsheyn who found some deficiences that we've corrected. All of my autoimmune stuff is normal (SED, ANA, CRP) except a borderline elevated Sjogren's marker. I haven't had a chance to follow up because of family stuff going on but am hopign to see a rheumatologist after this flare settles down. Just wondering if there is anyone else here that sounds like me, that could offer some advice.
  2. Hey, I agree with everyone else! Go see an EP. It sounds like that doctor did blatantly lie. Your pulse should not be 188 after 10 minutes of standing! I'm not sure that reporting him to the hospital will yield much because they have a self-interest in protecting from lawsuits and doctors are never supposed to admit fault, apologize, etc. You could pursue malpractice or file a claim with your state's ethics board, but, I would be very careful because that sort of thing may make future doctors very wary of treating you. Just fyi, I was diagnosed by my PCP doing a poor man's tilt in his office. Though it may be of interest to future physicians, I don't think a TTT is necessary for diagnosis and treatment. I later saw a cardiologist with an interest in POTS, and my poor man's tilt seemed to be sufficient as in he didn't request a tilt. Just passing this along in case you want to pursue a diagnosis but don't want to go through a tilt again.
  3. That makes absolutely no sense because somatoform disorders by definition have no underlying disease process! He thinks there are problems and then the "mind" magically creates symptoms which match up? Yes, my menstrual cramps, which are well known to be caused by uterine contractions, are just feminine hysteria. (Sarcasm) Goodness, how do some of these people get through medical school? Don't give him a second thought. (I, however, would give him a menstrual cramp for a day.)
  4. Hi Parages, I have had a lot of the symptoms you've described because of migraines, especially the tinnitus. They arrived shortly before POTS and I think the two are related. They had me do an MRI and a neurological examination as well, and both were OK. Good luck with your tests!
  5. ETA: Wait, I reread your post. "Somatic" means bodily, not psychological. That would mean he thinks your symptoms are deriving from illness in your body. Did he say psychosomatic? That means physical symptoms that originate from emotional distress. If so, read my original post below, if not it may just be a misunderstanding! Original post: I really encourage you to drop that psychiatrist and get another opinion! I have CFS and many years ago,when I was first diagnosed, I suffered from a reactive depression. Who wouldn't, after having to drop out of grad school and live a life of extreme debilitation and disability? I approached psychiatrists with the full expectation of some wanting to label me as a somatizer simply on the basis of reading my diagnosis, so on my first appointment I thought of it as in interview, as in I was interviewing the psychiatrist for the job of treating me. I asked questions to determine their "epistemology" of my illness. I found one who referred me psych nurse/therapist who had chronic illness herself (MS) for talk therapy, while he prescribed medication as needed. It was the best of both worlds and after a while I got a lot better. So, please don't give up. I'm very sorry that this happened to you and unfortunately it is not uncommon. You're just as worthy of help as any other patient and you certainly don't need it with a side order of inadequacy on the part of the health professional. If you want to engage this person further, here's a recent journal article about a report made on CFS by the Institute of Medicine, which states clearly that it is not a psychological illness: http://jama.jamanetwork.com/article.aspx?articleid=2118591
  6. Yes! Before I was on a beta blocker I wore a heart rate monitor, and my pulse would drop suddenly when I bent down, like Katy says. Like to get fruit out of the drawer in the fridge, it might go from 130 to 90 very suddenly. I also get the wooshing noise in the yoga cobra position, which is an arched back while lying on your stomach (see link for illustration for some reason the forum won't let me post the image), and sometimes even a headache. I have no idea why, so I stopped doing it.
  7. Hey, sorry you're going through all of this, best of luck trying to get some answers. Regarding the migraines, I had a serious bout of them a few months before getting major dysautonomia symptoms. Mine had weird, neurological auras that were very scary and I went to ER twice wondering if I was having a stroke. Nope, just migraines! (Sorry about your mom's 12 strokes, sheesh.) Unforutnately their IV meds didn't work for me. My migraines were daily, 2-3 a day, and they didn't want me on an abortive or an NSAID or god forbid a narcotic. I got lucky and did well with the first preventative I tried which is gabapentin. I realize you don't want to add to the list of meds your daughter is taking but it really has been a life changer for me. Topomax and Depakote have helped a lot of people too I do get mild headaches but they are like a spring breeze compared to the melon crushers I was having! And, yes, I have had to taper off lorazepam, no problems. Ask a doctor for a taper schedule and make sure she follows it.
  8. Thanks for this, it is really interesting. The part about early life use of antibiotics was especially pertinent to me: I had a several month run of strep throat as a child and was on antiobiotics for a long time until my tonsils were finally removed. In my adult life I've developed allergies, asthma, me/cfs, irritable bowel, and now POTS. My sister also had strep/antibiotics for several months at the same time as I, but she was almost nine years older and has had a healthy adulthood. It makes me realize how much of the body's systems and pathways we don't understand at this point and how science is an ever ongoing process.
  9. Thanks for all of the replies, I think those of you who pointed out to control what you can (risk factors, diet, etc.) are totally right and it's great advice! We just do the best we can. Bellgirl, my cholesterol # is borderline at around 200, but my HDL is high, hdl:ldl ratio is very low and triglycerides are always low. I'm told these number are more important than total cholesterol and the cardiologist NP said my risk profile is "boring" and that a statin isn't necessary. I've reduced sugars in my diet and it seems to help with LDL but I need a few more tests to make sure. GJensen, I've had a few EKGs during chest pain episodes and all have been normal except one I had at urgent care, which other doctors reviewed and later said was normal and that the urgent care people read it wrong (!) They told me I didn't need a stress test so I didn't get one. I know you've been diagnose with spasms in your coranary artery, have you had abnormal results in your cardiac work ups? I'm so sorry you have to deal with that. bethanyh, I'm sorry you can't take a beta blocker. How low is your BP? I'm on bisoprolol and mine is usually 90something/50something lying down but they don't seem concerned. I get PVCs too and they hurt and are very scary and the BB has helped a lot with those. I also hate living alongside constant pain, doubt and worry! For myself, I think the catecholamines from POTS accentuates the anxiety. I try to do restorative yoga to calm myself.
  10. One of my worst POTS symptoms is chest pressure. It starts in the middle of my chest when I stand up and creeps up to my neck and down my arms, and worsens on exertion. I also get shortness of breath, poor appetite, and dizziness. These have been improving but I still get them. From speaking to my doctor (and reading the forums) I know these are symptoms of POTS. I've been to see a cardiologist and my echo and ekg are normal. So, today a study came out saying that younger women are more likely to die from heart attacks because they don't recognize the symptoms and delay treatment: http://www.npr.org/blogs/health/2015/02/24/388787045/younger-women-hesitate-to-say-theyre-having-a-heart-attack It really freaks me out because POTS gives me symptoms of a heart attack nearly every day, apparently! If I had a cardiovascular event, how would I know? My cardiologist says a lot of POTS patients go to emergency only to have normal test results. I asked him when I should seek emergency care, and he didn't know ¯\_(ツ)_/¯. Another doctor said, "if the pain is different" which is pretty vague. I'm not normally prone to worrying about my health but thinking about this is really making me crazy! I guess all I can do is take care of my general health and try not to think about it.
  11. No suggestions here, just so sorry you're going through this and I hope you find some answers at Vanderbilt. I hope you find one of those bright, motivated docs that gets interested in you and tries to figure it all out. I am super reactive to medication too and I understand how heartwrenching it is to find something that works only to have my body say "no!" I think our partners, family, close friends, etc., are the unsung heroes of chronic illness. Props to your wife!
  12. Hi, so sorry you went through this! How scary, and thanks for educating all of us. I had never heard of this. Please be careful, my Dad had his second stroke two weeks ago and it's been life changing and horrible. If you have any signs of stroke, go go go go to the ER! Strokes are truly a nightmare.
  13. When my POTS was very bad I had chest pain in the car, even when lying down in the back seat. I wondered if the air pressure is different in the car vs. not in the car, and my ANS couldn't compensate? I don't know. I too can't handle a lot of sensory stimulation, I find it very very tiring.
  14. Hi Goschi, do you think it might be something like sciatica? (Pressure on a nerve in the leg from anatomical problem in lower spine or hip). I had a bout of that last year in my right leg and being seated made it a lot worse.
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