jbbb
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Posts posted by jbbb
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Yes, it does with my daughter. I think it is the main reason she isn't in school at all, now. In fact, I'm up now with her because she was feeling particulary bad (sh'e 15). Dr. Grubb says it can go with the territory of POTS. There are some sleeping meds you can try, but, they often don't work (at least they didn't with my daughter). Mayo says her sleep results are extreme, and she doesn't really get much significant sleep at all. I think there are a lot of PTS patients who suffer with this. Anyone have any thoughts? Joan
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My fifteen year old daughter was put on mestinon a week ago by her neuro. We started at 30-then went to 60- she didn't notice any diff. Then, we tried 90 mg, and she feels sick. Midodrine and florinef really did nothing for her. I was looking for a dramatic feeeling better- but the neruo said to go back to 60 for a while, that we might not see a dramatic diff, but it still might help her dengnerating muscles. When you said you feel great on it- what does that mean? Great in what respect? Thanks, Joan
Weird blister-like bumps
in Dysautonomia Discussion
Posted
If they are like what my daughter gets, Dr. Grubb said they are peziotic granules (something like that) and are a result of her also having EDS (hyperflexibility) . Sometimes they progress to almost an impetigo-like condition, and sometimes antibiotics seems to help . She also gets cuts that won't heal and sunburns easily. You can chack an EDS website. Joan