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.

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

My daughter gets migraine headaches 3 days after like clock work. WE have tried everything and nothing has worked except she started taking prednisone 15.mg on that day and that has helped a little. We have tried slowing down rate and benadryl and hydration and nothing helps. She also gets fever and neck pain. Same for both Gammaguard and Gammunex. Trying to get sub-q approved to no avail.

Ask your doc about prednisone for the headaches.

Hang in there Tjay, hydrate and rest. Once you find what works best with your body, hopefully you’ll be on a recovery and keep moving. Try and maintain your job as long as you can.

I was cane bound Nov-Jan 09 now I am back to full strength (almost) I did 5 12 hour days, and three 15 hr days and I work as a turbine mechanic , so stamena will return once you find the right treatment. It took me along time
to get straightened out. keep pushing the doctors and suggest ideas that
stimulate what is best for you.

Be Strong and come here for the best advise and opinions you’ll find on any site. All our stories are different but you’ll gain feel for the situation reading and asking questions.

Good Luck.–tim–

Hi Katie,

I get headaches too. I am new to IVIG. Had it twice. got real bad headache the first time, not so bad one the second time.

I get it at a rate of 100 ml per hour and it takes all day. Perhaps slowing yours down will help. I guess it depends when you get the headache. If you get it two days after, I don’t know if slowing down will help. thats what happens to me. like day three or four the headache sets in.

the water is important, I think It may prevent more problems than we know.
There are alot of options for you with your wide frequency. I am sure the doctor can make an adjustment and yet stick to his plan. Slower would be less disruptive.

Good Luck Katie!

Jangray, welcome to the forum.

Regarding recovery from exercise, Lee gives the standard advice. It might be best to start with stretching and range of motion at the gym and make sure that this is recoverable in the 12-18 hour range, then add more.

I had severe headaches on the left side at time of diagnosis of GBS. the Rehabilitation doctor said that it was myofascial pain because there was point tenderness and visibly tense muscles in my neck. This was because my muscles were weak and my posture changed as I tried to cope with the GBS. He injected the area with lidocaine and this helped tremendously. The pain did return after a few weeks, but not nearly so bad. It slowly resolved for me over the next month or two. You might ask/consider if you have something similar causing the jaw to neck pain. You might also think about if how you hold your head has changed and also if there are ways to help relieve tension in the neck muscles (like changing monitor height at work, how you hold a phone, how you hold a book/papers to read, etc. Taking time to stretch the neck periodically might help if it is due to weakness, even subtle weakness since GBSers seem to have trouble with sustained muscular activites.

On the feet issue, I assume you mean that you are hypersensitive to touch with bare feet. Do you do okay with shoes on? Some people need solid shoes/socks to protect against the hypersensitivity. If you have trouble despite this, it may mean that the nerves of the feet are annoyed enough that you might eventually benefit from neurontin or similar. This is standardly used for pain, but people’s definition of pain varies. Saying that you could barely stand to walk is an expression of pain, it just is fortunately circumstantial enough that maybe you can be okay most of the time, I hope.

With Hope for cure of these diseases.

Hi Miami Girl and Herself,

I have tried everything including solumedrol. The gamunex brand seems like I get them less but even this brand I still get them. I have been getting IVIG for about 5 years and have gotten headaches the whole time.

Do you all get more numbness after an infusion? After an infusion, I get considerably more numb plus kind of sick. It’s like that old saying, “the cure is worse than the disease”.

David

Its funny that one Neuro says headaches don’t have anything to do with GBS and others say it does.
Even Nates PT says they do, his primary care doc says they do, his hospital nurses says they do, his old Neuro too.
How they can be so divided is puzzling.
If you don’t have them before you got sick, then suddenly you do should tell them to wake up and smell the coffee. LOL
Nate only had one migraine that I knew of about 3 yrs ago. Now he has them 2 or 3 times a week.
He has been doing better though since we took him to the chiropractor.
Its such a relief for him too.

I have had migraines since I was about 20. My daughter and youngest son also have them and my mom did when I was a kid. I know my triggers but it isn’t easy to stay away from them, especially chocolate.
Nate never had bad headaches until he got GBS. Now he has horrible ones.
They start at the back of his head then move to the left side like mine.
We saw our doc friday and I told him that they seem to be getting worse.
I asked him if we can try Nate on Imitrex to see if they are really migraines.
He agreed that it would be a good idea so he gave us samples.
Next time Nate has a whopper, I will give him some. Hopefully it will work like it does with me.
Nate has not had a really bad one though since he got a chiropractic adjustment a week ago last friday. He got a small one last week before we saw our regular doc, which was easily controlled by Vicodin.
I wouldn’t wish a migraine on anyone but I hope if they are migraines that Imitrex will work on him.
Watching him in such intense pain is hard, knowing how much he has had to endure already.

I got headaches all the time during my first year or two of GBS. I personally attributed it to trying to hold my head up for longer than I should have during the day, which cuased muscle strain, fatigue, and at last, severe headaches. If I would rest more, or not keep my head upright, than my headaches were much less. Just a thought. I don’t get them any more unless I’m really weak and fatigued so it seems to go hand and hand. Hope this helps. Thanks, xxoxoxoxoxo Roxie

I had exactly the same headache you described; went to the GBS forum and GBS experts say GBS does not cause headaches-interesting!

Anyway, I was on 1,200 mg gabapentin and my dr put me on 25 mg topomax- I was a walking zombie. But the headaches were gone. With the aid of a pain mgmt spec we got me down to 400 mg gabapentin, twice daily- w/breakfast and about 4 pm and 1/4 of the 25 mg topomax. I function much better. Have an occasional headache.

Good luck with those headaches- they can really slow you down.

Mason was admitted to the hospital Sat for severe headachs, stomach pain and dehydration. The dehydration was part from the vomiting and dry heeves he had the night before.
The doctors did an Xray of his stomach and found a xlarge gas bubble. The bubble looked like it took up half of his stomach. They could not belive it. He also had a blocked colon L and R. They gave him a shot of Morphin at 7pm sat night. At midnight they put a feeding tube down his nose. They fed some medication threw the tube.
Sun about four, they pulled the tube. He was still was so sick. I had not seen him that sick since he first was diagnosed with this disease. They gave him a dose of Lyrica. Within an hour he was his old self. He was smiling and happy. I was so happy.
The doctor took Mason off Neurotin he also changed his amitriptoline to every other night.
The meds he changed him too: Lyrica
Miralax
Predisolone
Levisin
Cyproheptal
Amitriptyline
Trish

[QUOTE=hiswife]Thanks for the information, it’s not just his gluts that are affected but its just a very bothersome symptom. His quads his knees, his feet. His first neuro had him on ivig every 3 weeks and he was improving, then when he was switched to a different neuro. he changed treatment plans & stopped ivig’s until he felt considerable weakness and loss of strength, he seemed to get that about 3 weeks after but by the time the dr saw him & either said yes or no to another course of ivig it would be 5 weeks out from the last, he started getting considerably worse over the last few mo. But this last ivig was 3 weeks from the previous one and he feels horrible, he has a lot of weakness. His new neuro. is going to hopefully do the maintenance series of ivig instead of the aggressive dose, at least until we see if the Imuran works, he hasn’t been on it long enough to know.

He found out he had CIDP in February of this year. It was hard to diagnose because he had a back surgery, fushion with hardware in Dec. 05, so when he started getting symptoms for the longest times they thought it had to do with the surgery until it started to affect his upper extremities.

the other thing he’s really struggling with is severe headaches, does anyone have these with CIDP. The doctors don’t know what may be causing it. They are there all the time. We have so many questions for Washington University when we go, hopefully they will be very helpful for us. Thanks again

hiswife[/QUOTE]

I know what you are going through! I am a new member, just sining on today. I have been reading many of the topics discussed here.
I have been going through hell since 2003, having been in perfect health prior.
But headaches, which my neurologists lated told me that they were migraines, were horrible.
UNTIL I finally found a neurologist specializing in rare neuro. disorders. He was also part of a team of neurologists, of which the group formed the “Migraine center for Southern California”. They often do much research and human guinea pig testing with new or possible drug help.
My neurologist, by the way his name is Dr. Gregory Sahagian, had me try Indocin 50 mg. three times daily. This team has be experimenting with drugs that originally were for osteoarthritis, (I am not a doctor, so I don’t know the medical terminology for it). One of those drugs was Indocin. I had originally tried various “meant for migraine meds” to no avail.
Then last year I started with the Indocin. It is very harsh on the stomach, so he also prescribed Zantac twice daily.
I gotta tell ya–I went from having migraines 2 or 3 times per week, down to once a month. I do avoid long exposures to outdoor light, as that is what triggers mine. But that Indocin REALLY HELPED ALOT!
Mention this to your doctor– it is a very new therapy, and I can attest to it’s good effects. I hope this will help.
THIS IS ALSO MY FIRST POST, SO I HOPE I AM DOING THIS RIGHT (LOL).