Through the many years since have been diagnosed with MG I have had pain in the back of my head. Usually only on one side and sometimes my neck too, its not constant but more so when im having flare ups or really tired. When I have brought it up to my neurologist and even an MG specialist I go see they both have told me that its not from MG but I seem to think it is. Does anyone else get these head pains?
-Tracey

When my neck muscles are weak, other muscles compensate for them--or other muscles get pulled--and I get muscle cramps and soreness in my neck and shoulders. Neck pain often radiates up into the back of the head. Could it be something like that? This is just a guess.

Abby

From time to time, I get cramps on top of my head and always on one side. My dog freaks me out by constantly sniffing my head and rubbing his head on my head. Luckily, I had the MRI to rule out the unmentionable.

My problems with my neck and shoulders seem to be situational.
When I had a stiff/sore neck and shoulders, I was told I pulled the trapeze muscle, which is located on the shoulder blade. I tend to believe this, since the problems occurred after I awaken. As a result, I try to make an effort to sleep with arms at my side.

My neck and shoulders get sore during the day, especially if I am having a stressful day. If I don't get a good night's sleep, it seems like I wake up sore in my shoulders and neck. I never had headaches on a regular basis, but lately, it seems like my head throbs a lot or sometimes it feels like an annoying ache but not a full-blown get-you-down ache. I don't know if it is sitting at a desk most of the day or if it has to do with the MG, but I do know the more exhausted I get, the sorer my neck and shoulders get. All I know is when I am so tired that I could just cry and don't even feel like carrying on a conversation, these things are so much more prominent that you can't help but notice and relate it back to MG. I really think there is much more to MG than just general weakness or either the side effects of MG has a domino affect on the rest of the body. I think all these symptoms should be noted and discussed by the medical association so future patients may have a little more knowledge of what could affect the body if MG is present. I think if a questionnaire was available, more knowledge could be compiled and looked at and questioned that this or that is possible. This may have already been done. Anyway, I hope things will get better.

Thanks for the response from you all! I agree, I think there is so much more that goes along with MG other than just the stuff we read online or in pamphlets. Just like these pains we get, as well as what it does to us emotionally, just to bad no one has written about it. Well I guess thats why we have this forum and im sure glad I came across it thanks again

I have been complaining of the same thing the last couple of weeks. It is like at the base of the right hand side of my head. I say it is a headache buy I kinda wonder if it is neck muscle strain.

Have you at least had an MRI to be certain it is not from a disc issue or a circulatory issue of one of the brain arteries?

Does the pain seem to get worse between doses of Mestinon (if you are on it)?

Muscular pain, as these guys have said, can occur when muscles get weaker or are overused.

Have you ever had your heart checked out? What about a sleep study. If you have apnea, it can cause a headache too.

I hope it's "just" the MG and not something else.

Annie

I rarely get headaches, even with MG, but the last three days I have been getting pains in my head, mostly on the sides, nothing serious, but this is new for me.

I did make one change these last few days, I have reduced my Mestinon by half.

I have (temporarily?) eliminated my morning and evening dose of Mestinon because I seem to be having some improvement of my MG symptoms during these times and am getting too many Mestinon side effects. Mostly the Mestinon during the mornings and evenings has been making me jumpy and nervous, this has happened before when my MG decides to be mild. But I didn't get a headache that time when I reduced the Mestinon, at least not that I remember.

I am feeling much better since I stopped taking Mestinon during these times, but this headache is driving me crazy. It is a minor headache and could be a sinus headache...but I am not having any other allergy symptoms so I am not sure.

Since this is a new symptom for me, if it gets worse or doesn't go away, I am going to call my neuro. I know he will tell me that MG doesn't cause pain, but I still feel it important to report any new symptoms to him just for the record...

I thought at first that this pain might be because I was weak from not enough Mestinon, it is hard to tell sometimes. The headache seems to come and go all day and doesn't go away when I do take Mestinon. It does go away when I am sleeping and I wake up just fine.

To be honest, I'd rather have this headache than feel nervous, but still, it is a sign that something may be wrong. I am happy to say that I have been able to do a few extra things, I feel like celebrating rather than wondering why my head hurts a little. My mornings have felt wonderful these last few days, I almost feel like I don't have MG for a few hours.

I do know that drugs often give me headaches, as do vitamins, allergies, or being dehydrated. A cause of neck pains for me is sitting at my computer crooked when I can't sit up straight due to weak muscles, I've learned to pay attention to sitting facing straight towards the computer and not leaning to one side or the other...time for a break when that happens.

I hope any of this information is helpful.

Absolutely I have this!!

It took time for me to figure out. And while pain isnt an MG thing I know that my neck is one of my weakest places from the MG so the indirectly I guess it is caused by the MG.

I learned from many experiences with my grandkids, sitting on a couch looking down reading to them after playing a game and all this time I am looking down. This is my heavy head trying to be held while lerched forward and down. It would usually hit me the next day the pain you describe in the neck and base of skull some. As I became weaker or tried to do certain activites on a weaker day this would happen again.

Now for me 2 of the biggest offenders for this is leaning over to gather loads of laundry and leaning over a container of files to try to find something like I did Sunday to prepare of the Doc visit. I have a soft collar support I have to wear more now in hopes of preventing this. If I put it on before I do these things maybe it wont be as bad I hope. The collar doesnt fit well so I am still experimenting. There have been times I just have to lay down to take that 'load' off my neck. If you take one of those gell packs for sore muslces and put in freezer and lay down with this under your neck it will feel like heaven!. Putting it there at bed time is actually considered a sleep aid by some but it will help take down inflammation there. Use a medium sized one with lots of filling.

Annie59