Question about headache

    • September 26, 2011 at 10:08 am

      Hi Everyone,

      I have a question about headache and CIDP. Recently I have gotten a headache that has lasted about a week. It has been 14 days since my last IVIG infusion and this did not crop up right after the infusion, about a week later so I don’t think it is due to the IVIG. But the headache starts in the back of my neck and radiates up my back of my head. It isn’t horrible but bad enough that I know it is constantly there. Pain meds don’t seem to help it go away. If i rub my neck and head it feels better for a while but always comes back. The other thing that I am experiencing is a weird ‘motor feeling’ in the neck when I lay my head down to go to sleep at night. It feels like someone has a fan sitting on my bed causing the bed to vibrate ever so slightly. This headache is getting old. I feel like I am coming down with something but I don’t get sick. Could this be a symptom of my CIDP? I don’t see anything regarding headache as a symptom except for post IVIG. I don’t have any other symptoms like numbness in feet and hands. My condition seems pretty under control except for this darn headach that cropped up about a week ago. I don’t know if I should report it to my doctor as I don’t know if it is really related to CIDP or not. I feel so tired of feeling like my head and neck are going to explode!!!! I wonder if it is stress related or what? Any insight would be helpful. Thank you.

    • Anonymous
      September 26, 2011 at 4:28 pm

      I’ve had a similar headache & I don’t have CIDP. I came down with a cold late last week & yesterday this terrible headache started. It started at the back of my head, went down my neck & into my shoulders.

      Now I’m left with terrible neck pain. I’ve been taking Aleeve & it has helped slightly.


    • Anonymous
      September 26, 2011 at 8:43 pm

      I am not saying it is or isn’t CIDP related, but I am careful to keep from clumping everything into CIDP.

      Don’t get me wrong, many times CIDP does affect your life in many different ways. Besides the disease and its symptoms, CIDP can and does put a lot of stress on yourself and your family, your job and your finances, and that “Sword of Damocles” thing.

      Stress, family stresses, money and job stresses, and all of the rest can definitely aggravate any symptoms.

      Maybe not CIDP caused, but something like a CIDP by-product?

      Keep everything in perspective and look forward.

      Dick S

    • Anonymous
      September 27, 2011 at 2:55 pm

      Chirpy Birdy,

      Migraines can last up to a week. Maybe you should talk with your family doc about this. I don’t get them in the back of my head, but it moves back and forth on the front of my head. Mine are triggered by hormonal issues, stress or red wine, caffeine, etc.

      Me and another member who had an H1N1 flu shot almost 2 years ago had mild GBS, but then it turned into fibro/CFS. Headaches is one of the symptoms. Both of us are treating with a doc in Miami that deals with vaccine reactions. It has helped a lot. If you want any info, let me know and I can send you a PM with the info.


    • September 27, 2011 at 3:06 pm

      My CIDP was triggered by a H1N1 vaccine shot back in November 2010 also. But i got CIDP and not GBS. So far I have had mild symptoms that I have been able to live with and control with IVIG every three weeks. But these headaches are new. I think they may be migraine but I never had one that involved the back of my neck so much. Usually my migraines last about a day or two at the very most and they don’t involve my neck. But stress could be a factor for sure. I am having some leg vibrations and stiff knees this week with my CIDP and this is stressing me out because I have not had much in the symptom department lately and now it seems i am having active CIDP again. I am not due for another IVIG for two weeks so I am just toughing it out and feeling stressed.

    • Anonymous
      September 27, 2011 at 9:28 pm

      I began having headaches that begin in the back of my neck after my infusions – either 20 hours later and sometimes (if I haven’t taken benadryl at night for 4 days following my weekly infusion) up to 5 days post infusion. Headaches are exacerbated by not drinking enough the day before and several days after my infusion. I take a migraine medicine that alleviates the neck pain; it is remarkable. The theory is that the migraine medicine controls the flow of fluid to the brain. With the flood of extra fluids we recieve via transfusion, it makes sense.

      Bottom line: migraine meds work for me and they might be right for you, too. Ask your doctor.

    • Anonymous
      November 22, 2011 at 1:39 pm

      The daily headache was one of the first symptoms of my current relapse, now into its second year.

      I was diagnosed with CIDP 35 years ago, was in a wheelchair and subsequently went into remission with some minimal residual paralysis. Now, after all these years, I started having daily headaches and fatigue. Months later the doctors figured out it was a CIDP relapse.

      In the last 18 months I’ve had 50 overnights in the hospital for ivig, have been on up to 100 mg of prednisone, 200 mg of Plaquenil, and 2 grams of cellcept.

      I’ve weaned myself off the steroids and have not had ivig for 4 months.
      I am finally getting better, but now have radicular pain and the suggestion of a headache in the morning again.

      In my view, this is clearly a symptom of cidp.

      Best of luck to you and hang in there!

      – Rosemary

    • Anonymous
      November 23, 2011 at 11:00 pm

      Also chronic headache can be a sign of high blood pressure.

    • Anonymous
      November 24, 2011 at 11:04 pm

      Chirpybirdy: This wierd headache is actually one of my first cidp symptoms. I never really called it a headache though. It was this wierd sensation- pressusure/ache in the back of my neck. It would send a wierd pressure up into my head. It was actually uncomfortable to turn my head cuz there was this pressure/squeezing? Then it felt like a tight band around my head. I don’t get that “tight band” feeling now- but I do get the pressure/ache up the back of my neck at times. I also remember getting some chills at the very beginning.