Hi Annie and Rach73

I am doing or have done just about everything you both mention, but not quite everything! Thanks very much for your detailed responses!

The thing is that my now-chronic headaches (about which I am now journaling in painstaking detail) started out of the blue, all of a sudden— right at the time my first real MG symptoms started! I am by no means ASSUMING they are related; I was just wanting to know if the correlation between MG and headache existed in the experience of any of this group's members.

Meanwhile, here's the best of several relevant sources I've found on PubMed.

Nishimoto, Y., S. Suzuki, K. Utsugisawa, Y. Nagane, M. Shibata, T. Shimizu, and N. Suzuki
2011 Headache Associated with Myasthenia Gravis: The Impact of Mild Ocular Symptoms. Autoimmune Disorders 2011:840364.

My summary of the article: Given the rather high frequency of patients in the MG study cited above who report headaches— esp. tension headaches—there might well be a connection indeed, whose indirect nature does not make it unimportant.

Nishimoto and colleagues write that, despite the lack of a “direct pathologic relation between MG and headache,” the following indirect relationship may well exist: “Head dropping and fluctuation of ptosis and diplopia would accelerate visual fatigue and/or stiffness of the neck, which could be the most important precipitating factors of headache associated with MG.”

Again, rather than assuming there is or isn’t such a link between MG (its onset? spikes in symptoms??) and headache, I am hypothesizing that some of us with MG might experience such a link.

I have consulted three doctors about the headache already, and will raise the issue with the two specialists with whom I have upcoming appointments. Meanwhile, just throwing this message out in case it resonates with anyone.

I had a few splitting headaches along my journey, too.

Could the eye muscle problems be involved? I had ptosis,and had to wear an eyepatch for a while because of mine.

Head / neck muscle tension might also be a possibility. Those are some pretty involved muscle groups, and keeping your head in the right position with sets of muscles fatigue-ing out could result in tension headaches from (mis)using subsidiary muscle groups. The head is a bit heavy and we rely on it for a lot of stuff, so the muscles supporting it get a serious workout.

I got sidelined from driving a company vehicle because I couldn't move my neck. I was moving my upper body to look in the mirrors.

Any time a muscle becomes weaker, there is stress on the skeletal system.

A weak muscle can cause secondary pain in MG. Weakness in area of the head from ear to ear, for example, can cause the feeling of a vice grip. That can occur after speaking or laughing. With MG, weakness is what happens after we DO something.

Maybe you could try using a u-shaped pillow while sitting. Those muscles need resting. Or more drugs.

There are many articles connecting headaches to muscle weakness. Massage can help. But massage is stimulating the muscle as well and can cause more weakness.

The odd thing about the body is that we can have more than one cause at once, thus the caution.

Annie

Eye dysfunction can definitely cause headaches.

Twice a month, when I have to sit down and pay bills, on computer and some by paper, I end up with a whopping migraine by the end of the session. And I know all the tricks to counteract the "wonky eyes" and all that is going on.

Normally, I don't really read, I just sort of skim over things. I keep my computer screen blown up to about 150%, if the websites still work that big.
(Use Ctrl + to make it bigger, Ctrl- to make it smaller, Ctrl 0 to get it back to normal. Or, hold Ctrl and scroll-wheel up for bigger, down for smaller, and if you get too mixed up, Ctrl 0 (zero) to get back to normal size.)

But when paying bills, I have to make sure I get all the numbers and passwords right, so it's concentrated, real, eye-work, and I pay the price with the resulting headache.

Is also why I can't do much reading up on things, or searching them out, myself. Wonky eyes don't allow it.