headaches after GBS

    • November 2, 2006 at 8:55 pm

      Hi all

      has anyone else dealt with headaches?? I am still getting them. It starts in my neck about the base of my skull and snakes up on both sides of my head (like a line from the back of my head up and over to my forehead, on both sides). The reason I dont believe they are typical headaches is because tylenol and excedrine do nothing for them. They arent like migraines either. Feels a lot like the “bone pain” I have heard about (and experienced) in our feet. I tell hubby it is as if it is not IN my head but on it, but not exactly my scalp either.

      Thinking of calling or emailing Neuro about it.

    • Anonymous
      November 2, 2006 at 10:45 pm

      Hi Fairy Odd Mother

      I too have what I guess is headache. Its not a pounding or an aching as such. Feels like an arthritis pain in no particular spot. If I lay flat for a long time it really bothers me a lot and I must roll over on my side. Of course then my ear gets numb from laying on it. I have often thought it might be part of the fatigue. When I was in rehab the therapist had me lay flat and force my head onto the pillow and that is where this started and it would hurt so much later I told her I no longer would do that. The past two days mine has been bothering me terrible. I have tried to nail down where this is coming from with no luck except to assume it is fatigue. Extra Strength Tylenol helped today. I very seldom have any pain I need to take meds for but this really got to me today. I am almost 4 1/2 years since onset. I have many residuals but am doing okey even though I must rely on wheelchair and walker. Life is for living and I’m trying not to waste what I have left. I’m 66.
      I hope others can give us a clue as to what is causing this ache.

      Take care.

    • Anonymous
      November 3, 2006 at 10:35 am

      I read the subject of this post and though it was ironic until I started to read the message… I have a headache today and have had a lot since GBS although my headaches feel more migrane like as I used to get migranes all the time since 1987. They seemed to finally calm down about 2 yrs ago and now since GBS the migranes seem to be back in full force. If I can go a day with just a regular headache and not a migrane, I consider it a fortunate day.

    • Anonymous
      November 3, 2006 at 10:41 am

      hi lori. yep got a similar headache also-3rd day in a row now. it isn’t a migraine-well at least mine isn’t like i use to get everyday prior to gbs, it isn’t going away with aleve for me either. although my infectious disease dr snapped my neck for me yesterday and today it isn’t quite soo bad. my neuro touched my neck muscles as well yesterday and man did that hurt. since i have a history of severe migraines and fibromyalgia i think these headaches are just another residual of gbs, i had them come up when i have over done it-except this time-i’ve been pretty lazy for the last week.:) :confused: maybe its a sign that the body is trying to fight off an illness-like a cold or flu-my family has been fighting them for the past few weeks and i haven’t come down with it, when i usually will get sick just from looking at a sick person. just a thought. being lazy isn’t like me so maybe there is more going on. take care.

    • November 3, 2006 at 4:07 pm

      thanks for the input. I am trying so hard to overcome the obstacles…fatigue, pain (which fortunately is not too awful for me), weakness. I told hubby I am sick of it, sick of not being me. And not ready to accept the “new me”. My entire family suffers from migraines and even my kids get headaches. They are normally taken care of by a couple of tylenol or excedrine and some sleep. These new ones are very similar to migraines, minus the over sensitivity and of course nothing touching them.

      Think I will check into chiropractic care and see if that helps a bit. And let my neuro know what is going on. Just hope I dont ahve to get stuck in that tube again (I just about panicked and I was doped up last time).

      Thank you!

    • Anonymous
      November 3, 2006 at 11:14 pm

      When I first went back to work, I would get migrane like headaches by midafternoon on Fridays. They felt very much like a migrane to me. I finally realized that mine WERE due to fatigue. When my body finally adjusted to being back at work, the headaches went away. Then, when I got stressed out I would get one. Now, I have been two and a half months without one at all. I’m really happy. Take it easy and get some medication for them if you need to.

      Tonya Correll

    • Anonymous
      November 9, 2006 at 10:25 pm

      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.

    • Anonymous
      November 13, 2006 at 1:36 am

      I’ve learned that using a neck pillow to completely take the weight of my head off the muscles of the neck and shoulders, and lying in a resting position with the pillow under the neck allows the muscles to relax so that the headache goes away. Running hot water in a shower over the neck and upper back/shoulder area before doing this, and then deep slow breathing while relaxing will gradually allow the headache to lessen and go away. Taking Robaxin, a muscle relaxant is my next move if this won’t lessen it, as it’s guaranteed to work for me. I hope some part of this works for you, too.

    • Anonymous
      November 15, 2006 at 9:22 am

      [quote=Denise]I had exactly the same headache you described; went to the GBS forum and GBS experts say GBS does not cause headaches-interesting![/quote]
      That’s weird – because when I started up with those headaches my neuro told me that a small percentage of people with GBS [B]can[/B] develop a type of chronic migraine but that it would ease over time.

      Now, even though I absolutely despise that little @#$%!, he [B][I]was[/I][/B] lightning fast with a diagnosis & treatment for me which probably saved me from the vent, and he was right about the headache thing too.

      My GBS headaches occurred daily for a few months, then they started easing off to a few times a week, then a few times a month. At about a year post-GBS I got them so infrequently I forgot to count them so I figure that is back to normal! ๐Ÿ™‚

      I know that doesn’t help you now while you are miserable with them. ๐Ÿ™ Medication (even strong narcotic medicine) did NOTHING for those headaches. I would lie down in a quiet, dark room, just like I would do for a regular migraine and rest. Overdoing it will definitely make it worse.

      ~ I’m sorry you’re hurting! I hope they ease off soon! ~

    • Anonymous
      November 15, 2006 at 9:43 am

      I was asked several times a day if I had a headache. Their information said that GBS can be accompanied by headaches. I did not get them! I very seldom have had headaches. I just contribute that to the amount of caffine I have daily. But after I fell a month after being home. I did jar my head, shoulders and back. I did not get a headache but I had pain in my shoulder and neck. I tried to let it heal on its own and I had no luck. So I did go to the chiropractor and he would make adjustments over a few days for 4 weeks. I found that the muscles in my neck were weak and would not hold the adjustments. I had been doing exercises to strenghten the neck muscles. I started to concentrate more on that area and had my personal trainer help me safely work that area. After a few more weeks I went back to the chiropractor and those final adjustments did hold. I contributed my pain to fatigue and muscle weakness.

    • Anonymous
      November 15, 2006 at 10:06 am

      :confused: hello everyone I have CIDP but I get those regular back of the head or middle top headaches. my recent adventure was that my arms were heavy and the hurt. plus wrists were very weak. hands hurt so bad I couldnt grab onto things. I don’t know if any of you have been told about brachial nueritis. that is what I was given a MRI for. I still dont have the results but the more I have read it is a part of CIDP also. They are trying to rule out a slip disc.

      I layed in the MRI and when I was allowed to get up I was dizzy and hard time keeping balance for a little while that went away. But still have the headaches and neck,arm, and hand problems. Has anyone been told this? thank you in advance for you comments.

    • Anonymous
      November 21, 2006 at 12:08 pm

      Here’s a new one for you. We went to see a new neuro last week, and he diagnosed Ben with having migraines, even though Ben doesn’t have headaches. He said that Ben had all the other symptoms of a migraine though, especially light-headedness and dizziness, so he prescribed Verapamil. Ben says it does the trick.


    • Anonymous
      November 21, 2006 at 1:59 pm

      A note to NebraskaFan ~ MRI uses magnets to “get the picture”. And we know that the pull of the magnet does affect the energy fields of the body. And we probably know less rather than more on how it ultimately affects “every little thing” ๐Ÿ˜ฎ I am always amazed when one says “that isn’t part of GBS”. Hey, we’re talking about the messaging system and that involves every part of the body. There are “no absolutes” with this disease process!!!! Most of us are not doctors But we live in our body 24/7. When your “6th sense” speaks to you, it is wise to listen up ๐Ÿ˜‰

    • Anonymous
      November 21, 2006 at 4:35 pm

      hey shan, not new one for me-i’ve been battleing migraines for eons now-my normal ones were very painful, but i had a few that had absolutely no pain at all with them. they are different to say the least. i’m glad ben was given a med that is helping him. he’s got half the battle won. give him hugs for me. take care.:)

    • Anonymous
      November 21, 2006 at 7:40 pm

      I have come to learn that headaches are a daily part of my life now.
      Durning the onset, the headaches were major. However, now they are not that bad…. But I still have to take a drug to keep it under control.

    • Anonymous
      November 21, 2006 at 9:11 pm

      Shan when I looked up that medicine (because I also have bad headaches), it said it was for high blood pressure and irregular heartbeats. Does Ben have either of those issues, or is it somehow related to the headaches? Just curious because I plan to talk to my Neuro. about my headaches.


      [quote=Shannon]Here’s a new one for you. We went to see a new neuro last week, and he diagnosed Ben with having migraines, even though Ben doesn’t have headaches. He said that Ben had all the other symptoms of a migraine though, especially light-headedness and dizziness, so he prescribed Verapamil. Ben says it does the trick.


    • Anonymous
      November 22, 2006 at 5:36 pm

      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

    • Anonymous
      November 22, 2006 at 10:52 pm

      I have noticed that since Nate got GBS, he gets a really monstrous headache about once a month and its a huge one.
      He doesn’t want to move unless he has to.
      He just wants to be totally still and sleep.
      He has to take Vicodin, every 3 hrs to keep the pain down.
      I guess with pain that bad, its all he can do til it goes away the next morning.
      So far, he has not had any that last more than one day.
      I’ve had Migraines for 34 yrs now so I know what that kind of pain feels like.
      Anyone that has never experienced it has no idea, trust me.

    • Anonymous
      November 23, 2006 at 2:08 am

      You should check with your Neuro about the headaches. Ask about ‘cluster’ headaches. These feel like migraines but can occur on either or both sides.

      There are five types of headaches and each has a cause and the cause should investigated. It could be nothing or it could be something.


    • November 23, 2006 at 2:32 am

      My MRI and CT scan were completely normal so I am not worried about anything awful with myself. These headaches are really odd. Not like any headache I have had…like i mentioned first off, these tend to start at the base of my skull, in the back, on either side and wrap up and over my head in two identical straight lines. Nothing touches them but time and lots of rest.

      Vicodin gives me migraines so I cant touch that. And having a family history of migraines, and suffering from them myself occassionally, I know how bad they can be. But these are definitely different than those…or clusters, or tension. I have not had one recently thank goodness, except for small nagging pains that feel as if a bad one is on its way.

      I find it interesting that a lot of us have experienced headaches before, during and after our symptoms hit us. And dr’s say they arent a part of GBS…hmmmm. We sure do learn a lot from each other huh?

    • Anonymous
      November 23, 2006 at 1:25 pm

      I love forums like this. We know far more than any of the docs because we are all tuned into our symptoms and tuned into each other.
      We can compare symptoms as if we were face to face.
      That doesn’t happen when we go see a doctor. They are not tuned into us the same way.
      They can only go from what they have learned from Medical School or from other Studies.
      The doctors also don’t have time to tell us everything they have learned or answer hours worth of questions from us either.
      Learning from each other is far more beneficial to us.
      Then we can go to our docs or take our family members to them and tell them what we learned from each other.
      I just tell the docs I learned it from a friend, not on the internet. Some docs still have a problem with that.
      Nate’s last Neuro did.

    • Anonymous
      November 23, 2006 at 9:10 pm

      [QUOTE=Jerimy]Shan when I looked up that medicine (because I also have bad headaches), it said it was for high blood pressure and irregular heartbeats. Does Ben have either of those issues, or is it somehow related to the headaches? Just curious because I plan to talk to my Neuro. about my headaches.


      Jer – Ben’s blood pressure is normal, and he doesn’t have irregular heartbeats. I was concerned about that too when I read about the Verapamil, but if you do a search on Verapamil + migraines, you might be surprised at what comes up. Apparently, it’s a pretty common drug for migraines.

      Cher – Next time something weird happens to Ben, you’ll be the first person I call. Don’t know why I didn’t think to call you two weeks ago when he was in the hospital! I’ll give him a hug for you as soon as I can give him one for myself. He’s working on something behind the TV right now, and I’m trying not to get involved!


    • Anonymous
      November 23, 2006 at 11:24 pm

      Thanks Shan, I am going to ask about it at my next appointment.

    • Anonymous
      November 26, 2006 at 1:51 am

      I didn’t have headaches with GBS until after the spinal tap. Other medical interventions for GBS can also cause headaches. Though headaches aren’t something I normally experience at this point in time, when I overdo it, such as using neck muscles too long to shop (looking about at the merchandise in stores) or in driving too long, my muscles grow weak, and spasms in the muscles result in a headache. The only solution is to completely rest, supporting the weight of my head completely. Nothing touches it, but using a travel neck pillow as a support when I sleep seems to relieve it the next day. In conclusion, initially for me, the headache was a side effect of the spinal tap. A headache now requires rest and support of the neck muscles and weight of my head. (It’s a small head but it sure weighs a lot.)