Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I’ve had a headache on the same side as my drooping eyelid that seems worse at night, but is now waking me up in the middle of the night.
Has anyone else experienced this? Almost like a tension headache that never goes away...
Becky
No headaches for me - fortunately!
Peter
just a clarifiction, the pain that you have is it behind the eye ball, if it is it should be more accentuated when you close your eye, this would be tipical of gm.
my self when that happens i know that i am in trouble with my mg, after adjusting my pirdoistigmine, and prednisone to curb the inflamation just in case, and taken very slow and deep breaths, i am able to control it.
just as i menti0ned to you it takes lots of commun sence and logic, as mg, is the kind of desease whit will drive us nuts.
best of luck (fighter)
And my breathing- I don’t know if this is common, but rather than constant difficulty breathing it’s “episodes”, usually lasting less than 5 minutes where I feel like my chest is heavy and I’m working to inhale.
I try to just stay relaxed, I could definitely lose my mind trying to figure it all out right now.
Becky
i went back to your other blog to see if i missed some info. it look to me that is a disconnect with your doctor in regard of your troubles
this is typical of mg, symptoms, and are , progressives, also you maybe taking some other meds, with do not go along with mg,
you sould go bact to your doctor asap, and have a talk in regard of your administration of meds, and make clear to him/her your symptoms, dont let them take it lite.
all mg patient have differents stages and classification, so meds react differently
best of luck (fighter)
- Nan
I've recently had really bad headaches only on one side at the back of my head. That eventually moved to the entire head. I also had really bad muscle pains on the same side but from my shoulder and neck. My neurologist dropped the dosage of my prednisone from 20mg to 15mg daily. Since that change, I must say that the headaches have decreased significantly. The only headaches I get now are milder and due to my double vision. I would suggest talking to your neurologist about adjusting your dosage. Maybe it is too strong for you and is affecting you more negatively than positively. The breathing problems may also be due to the dosage not being perfectly suited to your body. It's alot of trial and error. I do hope this helps in any way and I wish you all the luck.
Sincerely, sush.
Thanks for your input. I’ve wondered if some of my issues are side effects of pyridostigmine. I feel like because I still haven’t been diagnosed with anything officially, the neurologist acts like he doesn’t know quite what to do with me. I’ve researched my area and I know he’s good. I might just need to be more assertive and “annoying” to get more information. I finally was approved for my single fiber EMG.
Question: when you cut your dosage did you take it more often, or still every 4 hours?
I take my full dose (15mg of prednisone) every morning. It's been working for me. I take mestinon every 4 hours. I've actually gotten a pretty intense headache this afternoon but I think it's due to me being slightly dehydrated. Also, you do have to be 'annoying' and push for answers with some drs. But have you tried getting a second opinion? Maybe another Dr will be able to fully diagnose you and pay attention to your concerns. I believe it's really important to have that type of trust with your Dr. You shouldn't have to feel like you're crazy for feeling a certain way or feel like you have to push them or constantly say how you feel for them to listen. I've had that experience with drs already and it isn't nice. Don't let anyone disregard you. You're important and how you feel is important. Especially with a disease that changes the way you feel every day. I hope this helps even just a little.
Sincerely, sush.