Hello, I am new to the site and to GBS being diagnosed . I have experienced terrible headaches with burning in my scalp and itching. I have not been successfully with any of my many doctor’s advising me what to do. They look at me like I’m crazy. I had a mild case of GBS back in November and still looking for answers.
I learn from all the wonderful people on this site. Doctors have done nothing nothing nothing for me. But like you said look at me like I was crazy. Last doctor said oh that’s what happens when you retire. I said what happens. She said get sick and ended up in the hospital. Doctor before that said I was cured. I said really cured he said you walked I here. The headaches are bad for me, I get a massage once a week seems to help, I just started with the itching it’s horrible my ATMs lower legs and head lol. It will be a year for me may 5.
I was at my neurologist yesterday. He adjusted my meds. My worst residual is a constant, severe headache & itch. He wants me to stop taking the meds for it.
I asked him what should I replace it with. He said just keep taking Gabapentin. He advised I’m going to fell worse for awhile due to the withdrawal of Isometh and Foricet. 5 1/2 months of never ending headache and itch. I want to cling to some hope that this is going to pass but becoming discouraged.
Are you taking pain medication by any chance? When I take my Percocet, my face and scalp itch like crazy!! When I don’t need them, I don’t.
And even if your not on pain killers, it does sound like a medication symptom. I haven’t read much about itching as a “direct” GBS issue. But obviously discuss all this with your neurologist.
Thank you for responding. Well, doc said stop taking the pain meds and I’m now on Gabapentin and nortriptyline only. Will soon find out if it was due to the medication.
How about when you don’t have a doctor. I can’t find one to help me. They all say in my head really. Neurologist asked why I was there seeing her it hadn’t Ben a year yet she said, I told her trying to find somebody to help me. She told me to get a job and I would feel better really. I asked how could I work in the pain iam in
Goodness, so sorry to hear. What a terrible bedside manner. Do stop seeking help, keep pressing on. I had seen 5 different doctors before getting anywhere in my journey.