HeatherMarie
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June 28, 2017 at 2:05 pm
I have had more standard GBS (I think, always hoping it doesn’t end up being CIPD) so I don’t have a personal experience like yours. But I would like to encourage you to see a neurologist who specializes in autoimmune disorders. I have had a son with cancer (only about 50 cases a year are diagnosed with his particular type), a mother who has a rare autoimmune disease, and now my own (rare) GBS, and I can tell you I have learned it is beyond important to see the right doctor. Not just with the right specialty (neurology) but the right sub-specialty. Especially if you end up having CIPD (GBS is acute and doesn’t match your history very well), you need the right doctor to correctly manage it. I would look at the centers of excellence listed on this website and see if you can get into one of those, or research the neurologists in your city in terms of their sub specialties. It can make all the difference. I found that I could actually get into the center of excellence closest to me sooner than I can get into a neurologist who specializes in autoimmune here at home. Good luck to you. Be persistent and research!
June 28, 2017 at 1:54 pmI was having horrible insomnia before my GBS. Cymbalta was part of the regimen they put me on in the hospital. I took one in the morning…I have been phasing off of it now. (Every other day.). I have had mild sleep problems at night, so I think it was helping me sleep, but didn’t make me feel groggy or doped up. Medications are so different from person to person. I was told Lyrica made you sleepy but one doctor said most patients will adjust and no longer be drowsy with it..I took one at night when the nerve pain was at its worst in the hospital. Maybe try Cymbalta at night? I am in the process of phasing off all my meds as I am customarily a person who takes nothing. But when my nerve pain was severe I had to get some relief. I hope you can find something that gives you relief w/out worse side effects!
