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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
  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 of
  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
  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
  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 h
  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'v
  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:
  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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