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dkd

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Everything posted by dkd

  1. When you have a mast cell rash, is it itchy? I have a rash on my lower abdomen, right and left sides, that is itchy.
  2. I just call them muscle twitches . I do have them somewhere everyday, but not for long. Usually eyelid, but can be in other parts of the body-arms, legs, abdomen, one that's really weird is in my groin area Mine have never been painful, just annoying. I had a twitch in my shoulder this morning when I woke up, so it's not related to being upright specifically. I looked on youtube once and saw a few videos in which the muscle was twitching very strongly. Mine aren't that bad. I don't think anyone else could see them, I just feel it. Sometimes they seem like they're really deep in the muscle where it wouldn't be visible on the surface of my skin. I mentioned it to a neurologist once and he just said 'a lot of people have that'
  3. I have an exaggerated startle reflex to a lot of things also. Mainly the phone ringing and hubby's snoring. I did go through a time when I drove on the interstate, I had the feeling that every car that I passed was going to swerve into me. I finally taught myself that not every car was going to hit me and to just calm down about it and keep my eyes looking straight ahead. My neuro prescribed Lexapro once and I only took one dose. I felt like my startle was increased and it made me urinate a lot! So I felt like it was making me more anxious. My GP doc later prescribed Cymbalta and I never took it cause I was afraid it would cause the same symptoms. I have not tried to go to the movie theater but I have thought that it might be a little too much for me. I sometimes have to turn away from the tv if a show has too much action going on, or flashing lights. So, I don't know--does this mean we have too much adrenaline floating around in our systems???
  4. That's why I don't talk about my condition to people anymore. If they ask how I'm doing, I say 'just fine'. Too bad it's your sister though. That's tough when it puts a strain on family relationships. My hubby's the only one in my family that knows and I don't even talk to him about it much.
  5. I tried three different ones before I found one that didn't have me nodding off all the time. My doc told me he had a long list of betas that we'd just go through til we found the one that worked best for me. So, maybe give your doc a call and explain that you're really tired, he might switch you to another one. Is your blood pressure low while taking it? That was my problem. BP was in the 90s/50s range. I took it for about a week before I called, the second one I took for a couple of weeks, then changed again. I don't remember having extreme fatigue with the one that I take now. My bp reads around 109/65ish on my current med. Good luck!
  6. I've wondered all of those things also but never got straight answers. I also recumbent bike and my HR never goes above 100 (on beta blocker). So, I wonder if it's even doing me any good. The other night I felt kind of sweaty and weird after bringing laundry up from the basement and HR was 111. It really doesn't get much higher than that, but I don't do anything much more strenuous than that-lol.
  7. Maybe you could ask for a tilt table test and see what he says. The treatment may be the same though. So, maybe he's just trying the meds first to see if it helps. Testing can get expensive and you still wind up with the same treatment. Did your heart rate go up when standing? It's good he's doing an echo at least to check the structure and function of your heart. That can alleviate some worry. I still wonder about the underlying cause of my dysautonomia. After a year of 10 different doctors, $7500 in deductibles for doctor visits and tests, I still have no answers and still have symptoms that aren't any better. My heart rate is down though due to beta, so I feel a little better in that area. I hope the beta helps and don't hesitate to call the doc if you feel worse. It may take trying a different one if it doesn't help.
  8. Thanks for posting your updates. My primary care doc didn't know what else to do with me so she prescribed Cymbalta back in June and I have not taken it yet-lol. Mainly because I don't want to have to wean off of it one day. I tried Lexapro for one day (prescribed by neuro) and it made me feel worse, so I did not continue with it. Best wishes with your weaning.
  9. I have heard most of those, but I can't say one of them bothers me more than the others. I guess I've come to not discuss how I feel with anyone, cause I usually get one of those responses. I just suffer in silence-haha. I did say something similar to your signature line to my primary care doc (who has not helped me and I probably will not see again)--either I'm going to get better or I'm going to get worse-I guess time will tell. I think the one that bothered me the most was that she said she hated to see people be victims of their symptoms--while she was trying to talk me into taking an antidepressant.
  10. Could you call the diagnosing doctor's office, explain that you have not found a suitable doctor for care, and ask for a referral? They might know someone who can be your regular doctor. Or ask that you could see him again since you have not been able to find anyone else yet.
  11. Good luck tomorrow. Hopefully you're on your way to getting some help. It took me about about 5 months to get to a cardiologist that actually could help me. I saw a 'regular' cardiologist and he didn't catch on to the dysautonomia. It was a few months later that I had another pre- syncope episode that I actually got to see the electrophysiologist in the group and he did my tilt test and prescribed meds for me. Do you know if your cardiologist is an EP? They know about the heart rhythm stuff. A tilt table test is probably your next step. I hope it goes well!!
  12. Thanks so much for posting your experience. I have thought about going to Vandy, but never thought I was 'bad enough'. My issues seem fairly mild when I read some of the problems that other forum members have. Thanks again!!
  13. Someone posted, maybe last week, that they had a reaction to the lights, but it was more of a convulsion and not a seizure according to her doctor. I forgot who it was though. Maybe she'll see this thread. Hopefully you'll hear from your doctor soon!
  14. Is your blood pressure low? The first beta blocker that I tried (atenolol) made my BP drop into the 90s/50s and I was extremely tired. I tried another one that I had a weird reaction to and the third one is what worked--heart rate staying below 100 and BP in the 110/60 range. So, do talk to your doctor about maybe trying another beta. Good luck!
  15. Did they tell you to not use conditioner on your hair that day? The technician rubbed my head with a small pad, maybe like an alcohol pad and applied the electrodes with some kind of glue. Then I just laid down on a bed for 20 or 30 minutes, with eyes closed. There was a short section where I had to open my eyes when she made a noise (I can't remember exactly what the noise was- a buzzer or bell maybe). For me, it wasn't bad at all. Someone else on the forum recently reported a flashing light part of the test that caused her to have convulsions. I don't remember having that kind of test. Hopefully you'll be fine! It did take me a couple of washes to get the gel/glue out of my hair so you might have an issue with that. I went straight home and washed it right away.
  16. Yes, I have this also. I think I've had it for years, before my dys-diagnosis though. I did have a doctor say that on my EKG, that I have an extra heartbeat every once in a while, like a catch-up beat, so I wonder if that's when it's triggering me to cough? Mine has never lasted for 10 minutes though. Have you had an ekg lately?
  17. I guess cheaper is relative and I'm sure it's different depending on where you live. Through my hubby's work, we were paying $800 per month and now through the new exchange we're paying $630 per month (that's a high deductible plan also!). So, yes, cheaper, but still expensive. That's a house payment for a lot of people!
  18. That's weird. You may make too much to get any government subsidy, but how much you make shouldn't affect you being able to buy insurance from Blue Cross. I think medicare is affected by how much you make. Try contacting an insurance agent in your area for some help.
  19. Hmmm, not sure what to advise other than sit down when you need to. I work on my feet also and my beta blocker has made that more possible by keeping my heart rate down below 100 while standing. I believe that I probably have high norepi also, but I haven't been tested. Do you know what triggered the spike? Were you just on your feet too long, have your hands/arms up above your head? Anything you can try to avoid?
  20. I was going to suggest the Healthcare.gov website also. If you can get on it. I haven't tried in a while ( I gave up after a few attempts- I could see the plans, but could never create an account). The plans that I could get through it were exactly the same as going straight through Blue Cross Blue Shield, so we went with an insurance agent and he signed us up for BCBS. We weren't eligible for a government subsidy, so if you think you might be, definitely go through the .gov website and see if you can save some money.
  21. I say that mine feels like a cat is purring, it's like a pulsating/vibrating sensation. I've had it for years in my left foot and sometimes in my right. I don't know if it's a nerve being cut off or the actual blood flow through an artery??? It is weird, but I've never had it checked out.
  22. Hi Melissa, are you caving in your avatar? I used to do that in a former (younger) life-haha. Thanks for letting us know about your visit and how it goes. I look forward to reading about your experience.
  23. Can you see an electrophysiologist (cardiologist) without a referral from your GP? I had seen a 'regular' cardiologist and he didn't pick up on the elevated heart rate (150 after taking a shower) but the electrophysiologist did and he's the one that did the tilt table test and I got my diagnosis (neurocardiogenic syncope). I saw 10 different doctors last year and he's the only one that helped me. So, keep searching if you can.
  24. Oh my goodness, please be careful then. At least have someone around in case you have a reaction. Hopefully you won't have to take anything at all
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