Mestinon hurts my eyes
 

I've given up on the Mestinon again. I really don't think it does anything for me, and I finally figured out that the aching and pulling in my left eye is a side-effect of the Mestinon, and not a symptom of the disease.

When I went for my stimulated SFEMG, I went off the Mestinon for two weeks in advance (after two inconclusive SFEMGs, I was taking no chances!). So when I was describing the pulling in my eye, the neuro said, "Even when you're off the Mestinon?" And I thought, "Hey, actually he's right--I haven't had any trouble with that these past two weeks."

I had thought that the pulling feeling in my eye came on when I was weakest, in the late afternoon and evening, but now I think that was a coincidence. That's the time of day the Mestinon is piled up (I was taking it at 9, 12, 3 and 6).

I think that before I was diagnosed, I really wanted to believe that the Mestinon was helping me, since that would be more evidence that I had MG.

Of course I may change my mind about this. Meanwhile, I am a very weird MG patient: seronegative and atypical symptoms, and not helped by Mestinon. One thing that helped the diagnosis is that I have Graves' disease, and in fact my MG symptoms first became noticeable a few months after I had a Graves' relapse. My neuro says the disease would have definitely started gradually, and taken some time to produce dramatic symptoms--which means it probably started at the same time as the Graves' relapse. That helps me to be confident that immunosuppressant drugs (I'm going to start Imuran soon) are the right treatment, even if I have some new kind of antibody that they haven't identified yet.

Abby

I know this is going to sound stupid but maybe you should keep a journal about this.

What if it's not the Mestinon per say but that the Mestinon is "revealing" something else going on. Like maybe - if you have Grave's ophthalmology - it is making that worse.

http://discoverysedge.mayo.edu/de08-4-endo-bahn/

http://www.mayoclinic.org/medicalpro...athy-2010.html

Be careful. Mestinon's effects have been shown to last for a couple of weeks. And when Mestinon wears off, you could have more "corneal drying" which could hurt the eye. Kind of like when you have too much acetylcholine, you have tearing (as in tears). Just a thought.

I think checking with a neuro-ophthalmologist or an endocrinologist might be a good idea.

Annie

I have the aching and pulling of my eyes too. They seem to wander all over the place. For me, I can't blame it on the Mestinon because it seems to come and go. It came and went before I was on the Mestinon too. I agree that keeping a journal would be a good idea.

Hang in there.

Abby,

"Too much" Mestinon gives me eye problems, including tense muscles around my eye and double vision. There was a time when I wanted to stop taking Mestinon, but have found that instead I take smaller doses and sometimes reduce my daily amount. Mestinon definitely helps me but too much Mestinon is worse in my opinion that not enough. It took a long time for my neuro to agree to let me vary the amount of Mestinon but since I started adjusting the amount depending on how I feel, I rarely get double vision.

If you have MG, maybe something similar is going on for you.

Journals are a great idea, I don't consistantly write down things, but when I have odd symptoms keeping records help figure out what is causing them.

I hope you are feeling better.

Thanks, Annie. It's good advice, and I'll take all of it. I see my endo next week (my neurologist said it's especially important to make sure the Graves' is under good control). I'll ask him about my eyes--it didn't occur to me this may be related to the Graves! I've had Graves for 15 years, and never had eye trouble, but I do get it--these diseases are unpredictable.

DesertFlower, your reminder is excellent, too. Maybe I was just taking too much Mestinon. I'm going to journal, like Annie suggests, and maybe try again. My neurologist said that even if it doesn't seem to be helping me now, it might help in concert with the Imuran.

Abby

I would like to add that if you are going to journal, please write the time that the symptoms occur and what were you doing before the incident.

I agree that taking too much Mestinon gives me eye problems, especially when my day is a low energy/low stress day, and does not require the medication. As a result, I would have twitching, blurriness, but I would not have double vision or pain.

I'm not a doctor, but if you are taking 60mg every three hours that might be too much. I know it would be for me.

Plus, it took a couple of months to get use to Mestinon. I was happy as a clam at 30mg every eight hours, until I was told that I would need to increase the dosage.

That increase was too much too soon, and I woke up one night unable to move a limb. In fact, I was having the serious adverse reactions, and it took a lot of deep thinking to convince myself to consider giving the medication another try. However, I couldn't breathe at night, so I was really under the gun, but now I know Mestinon better.

At the RIGHT dosage AND at the right TIME, it can be a great benefit.