NeuroTalk Support Groups - questions with ocular mg

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questions with ocular mg

My MG was diagnosed two years ago this month , it started with the double vision. Fortunately the double vision left, but I have on and off problems with the Ocular and some generalized MG>

The last month my eyelids are drooping terribly even in the early morning, I get alot of pain around my eyes also and it seems like it goes into my check and that side of my face even looks swollen , I imaging from the drooping. I start taking mestinon daily, but it really doesn't seem to help much., I work full time and yesterday I had to leave work early because the vision disturbances was making me nauseated and dizzy.

Is this normal with the ocular?

Something else I don't understande, I thought that the mestinon only worked while taking it and for 4 to 6 hours, but then I read that it can take 5 months for mestinon to work on the ocular portion., That confused me , can someone explain.

Are there any other helpful hints, I really do not want to take prednisone as I have high blood pressure and am a diabetic(which I have been controlling by diet only)

Any advice would be helpful.

I have primarily ocular too and I see you are from Ohio also.

I find that the weather (hot) makes me worse. I was doing pretty good until July hit. Also fluorescent lights make my eyes worse. When I first started with the double vision, Prednisone was the only thing that helped. I've been off it now for 4 months (after being on it 5 months).

Maybe your dosage of Mestinon needes to be changed. Have you talked with your neuro about this? I have my neuro's OK to adjust my Mestinon depending on my symptoms for that day. Some days I take 3 30mg tablets, some days I take 4. On days that I drive more, outside in the bright sun more, on computer a lot, etc. I find I need that extra pill.

Hope you find some answers.:hug:

This was strange I was taking my 30mg of mestinon every four hours and I actually gotten worse, I had to cut it down to 15 mg every four hours.

Quote:

Originally Posted by whirlwind123 (Post 689780)

This was strange I was taking my 30mg of mestinon every four hours and I actually gotten worse, I had to cut it down to 15 mg every four hours.

That's not strange -- taking too much can be as bad as taking too little. Finding that right balance is key and to top it off, it's a moving target depending on a lot of factors in your daily life.:)

Quote:

Originally Posted by whirlwind123 (Post 689780)

This was strange I was taking my 30mg of mestinon every four hours and I actually gotten worse, I had to cut it down to 15 mg every four hours.

Hi-Try with starting your 15 mg of mestinon every 4 hours, then after 1 hour, go and check in the the mirror to see if your drooping eye lid improved or not-chart if there were any changes. After a week, increase mestinon to 30 mg every 4 hours and again-check in the mirror at the end of the 1st hour to note if there was any visible improvement with the ptsosis. Chart each time. If needed, at the end of the 2nd week, increase mestinon to 60 mg and again, check mirror after 1 hour of the med and chart. You should be seeing dramatic IMPROVEMENTS in your eye lids. I havent seen my eyes wide open in years -until I began the mestinon and it feels so good now! My family and friends are thrilled to be armed with this new knowledge as they can now EASILY determine if I am up for an outing or if they need to jump in, stop my activity and give assistance. By observing my eyelids they know exactly when I start dropping into a severe fatigue state and will advise rest or increase of med. I am so relieved that they can recognize the varying levels of fatigue as my awareness and cognitive changes begin to alter and wander off into lethargic land that often I have pushed myself into a state of mind where I know I am falling into trouble. SOOO helpful now to have them armed with this visible signal and warning by the drooping of the eyelids! When they get to half mast-we know I am dropping into severe fatigue state-so it a huge warning signal to get me bedded down quickly. My fatigue at this level will quickly go into a state of temporary paralysis until the muscles have rested-sometimes days- and recovered from the exhaustion of usage. The double vision of MG should be vertical-as that is a hallmark sign-not horizontal double vision. Also, rest eyes when fatigue causes the severe droopiness,blurred or increased double vision. I lay down with my ice packs on eyes and rest 15-30-60 mins and get good results with this technigue. Good luck! And, rest, rest, rest! Hope this helps you:p