Ocular MG – Hacks, tricks, tape, etc?

[deb-hansen]

I had severe ptosis of my right eye lid (drooping so much I couldn’t see out of it) that I had surgery that resolved that problem.  For the vision I had been on Mestinon for awhile which had gotten me to about 75% of the time I had clear vision (but I was taking quite a bit per my neurologist).  I had a pretty bad ‘relapse’ over the summer when my vision was only clear about 25% of the time.  My neurologist put me on Prednisone, tapering off within 6 weeks and my vision is amazing!!!

[charles-karcher]

I was initially diagnosed with 4th Nerve Palsy.  My opthamologist said if it did not get better on its own than we would try Prismatic lenses.  I still have double vision but not to the point that I need those.  You might ask your neurologist or if you have an optometrist or opthamologist you trust if this might help you.

[mlbquiltsgmail-com]

Thank you, Charles.

[rina-nel]

My OMG miraculously disappeared after my Thymectomy in 2015. My eyes gradually returned to doublevision early last year. Very light sensitive still but I am taking Mestinon 60 gm x 3 a day and also take Azunum 50gm x 1 a day. I don’t have doublevision anymore although I have to wear sunglasses all the time…. even at night. But, my right eyelid does not droop as much although that eye is still incapable of looking up and the left eye is still shooting upwards. I am sure Steven Spielberg could use me in most of his horror movies 😂😂

[rick-b]

I have double vision and was recently prescribed Fresnell prism press-on lens.  It is a soft piece of plastic that sticks like a decal to one of my eye glass lens (I wear eye glasses).  The lens immediately corrected my double vision and I can finally drive again.  I took a prescription from my ophthalmologist to an optician and was ready to go in 15 minutes. It cost only $30.00 (although I received much higher quotes from other opticians so shop around; and not all opticians sold them). If you don’t wear glasses I am sure an optician can sell you glasses with plain plastic lenses. I tried glasses with the prism inside the lens but that cost hundreds of dollars and made my double vision worse. Try the press-on lens first.

[TheresaG]

The ground in prisms on glasses I found way better than stick on ones, in fact the stickies did not work for me and caused migraines.
I get my glasses at Costco, and it only adds $30-50 if you want them permanent. I pay $129. Total for new prism prescription lenses, with all the non glare goodies etc.
I Also have them reuse frames as my sight is constantly changing with new meds etc. gets expensive for sure.

[thomas-arndt]

I am a member from Germany, 69 years old and for three years I have had permanent double vision. My ophthalmologist prescribed me permanent prismatic glasses, which have so far worked perfectly. But unfortunately, my vision is getting worse and worse and I suspect that soon the prism glasses will no longer help either. My neurologist prescribed half a tablet of Mestinon (90 mg + 90 mg) twice a day and an additional 60 mg in the evening, but I don’t have the feeling that this really helps. An attempt with Prednisone (30 mg daily for 2 weeks, then 5 mg less per week) did not yield anything.

Unfortunately, there are few information about ocular Myasthenia. I would therefore be interested in which medication has improved double vision in you.

[ronald-e-clever]

<p style=”text-align: right;”>As far as the double vision I still have that and it has not improved.</p>

[thomas-arndt]

Seems that we have the same problem. What medication do you get?

[mlbquiltsgmail-com]

Thank you, Theresa.

[mlbquiltsgmail-com]

Thank you, Rick.

[paul-spychalski]

I have double vision also and need Prismatic lenses and need bifocal’s. One eye doctor said she couldn’t do it. Anybody elae need bifocal’s?

[john-g]

Charles is right on! Prism glasses for me worked immediately. Wasn’t until I had a firm diagnose of OMG and a few days on pyridostigmine was I able to see good without the glasses.

[mlbquiltsgmail-com]

Thank you, John.

[raymond-nelson]

Here are two tricks that work for me although not particularly elegant.  I wear glasses when using my computer and sometimes have double vision.  Have found that I can correct it by bending the frame of glasses so they sit canted on my face.  In effect I am looking out of the top of the left lens and the bottom of the right.  Individual results may vary.  When I am driving and bothered by double vision the trick of rolling the head all the way back and/or dipping the chin works for me.  I can regain good vision with head in normal straight ahead position by rolling my eyes in a circular motion for a few seconds.  Seems to loosen up the eye muscles so they can operate normally.  Be sure to do this safely when driving.  As I said, not elegant but works for me.

[mlbquiltsgmail-com]

Thank you, Raymond!

I too have double vision off and on and know the head lifting and lowering trick well! Definitely not elegant!

I love your sense of humor – individual results may vary!

My best wishes for you,

Michelle

[julie]

Perfect description of how I wear my glasses when my vision is bad. I have a pair of frameless glasses and they work great for the bad vision days!

Julie

[deborah-a-dortzbach]

I can relate to many of your concerns–with driving, eye fatigue, feeling droopy eye, sun sensitivity. Here are some of my tricks and lessons and go-tos. Always keep eyes moist–my opthamologist recommends RefreshPlus eye drops and I always have them in my pocket for use multiple times a day. Take multiple breaks from computer, phone, TV, reading, etc. I have even pulled off the highway at night for breaks, just for my eyes. Even 10 minutes helps. I have to actually close my eyes and rest them for a full 10 minutes, not just “take a break and do something else. I asked my neurologist just two days ago about the effectiveness of pridostigmine when used just “as needed” for symptoms. “Yes”, she said. It can be used that way and be very effective. So, I do–when I feel “droopy eye” coming on, I just can use that drug and feel much better. I recommend asking your neurologist the same. Just by way of information, I am on 2000 mg of CellCept daily and now a maintenance dose of prednisone of 2 mg daily. It seems to be “holding me” and I swim in a warm pool regularly which helps my overall physical and mental state tremendously.

[mlbquiltsgmail-com]

Thank you, Deborah!

I appreciate your feedback.

I’m bad about taking breaks, so I need to actually set reminders for myself.

I will try the eye drops, too.

I have never heard of CellCept or been on prednisone. I have only used pyridostigmine.

Your additional information has been very helpful to me.

Thanks,

Michelle

[matt-sereby]

cellcept is an immunosuppressive drug whereas pyridostigm is not. I am scared of getting on immunosuppressants until I absolutely have to.

[rina-nel]

I live in South Africa and for me the cold pool brings a lot of energie back into my body. Hot doesn’t work for me. I can also not realy relate to the medications you mention. I only use Mestinon and Azanum and this keep my eyes straight and the droopyness at bay. I guess I am lucky that this is the case. I feel for you guys. Some days we are ok and some days not so much and then I think if you all with great empathy.

 

[MikeS]

Hi, Michelle. I had my first instance of droopy left eyelid a few months ago. Initially I would hold my eyelid up, while driving, with my left fingers. That got old and useless quickly, even on short drives. I got out the scotch tape and tried taping my eyelid to my forehead. That seemed to work much better. I would place the lower end of the tape just below my left eyebrow, pulling up as needed before attaching the top end to my forehead. I used this technique until the drooping decreased to the point that I didn’t need it (around 3-4 weeks later). Besides driving, I also would tape up my eye for TV viewing. The scotch tape is hard to see, so it doesn’t look so bad in public. If I went shopping I would wear a baseball-style hat to cover my forehead and pull it down slightly to reduce visibility of my raised left eyebrow. I was diagnosed only recently and came up with this on my own, so if there are other better solutions for drooping eyelids, I’d sure like to hear other peoples’ ideas. Thanks! Mike

[mlbquiltsgmail-com]

Hi Mike,

Thank you for your reply!

I am still holding my eye open while driving and it is very old! I’ve been dealing with this for a year now and you’re right! It is very old.

I am going to try the scotch tape method right away! Hopefully, it will give me more freedom to drive, etc!

Best of luck to you in your new journey with MG.

Michelle

[matt-sereby]

I also have vision problems and have prisms 7 and 3. The lens on the right is a coke bottle thickness! My right eye droops so bad that my optometrist cannot provide me with a quality eye exam. On my last check up a couple of weeks ago my eye would not stay open. Once it gets to where I am looking through my eyelashes it simply closes. She had a sample of a new eyedrop called Upneeq which she tried in my eye. It did open it enough for an eye exam but I am not sold on it yet as I still walk around with it open just enough to not see my eyelashes. Have been on it for about a week. Not covered by insurance and runs $105 a month available from the manufacturer by prescription only. I don’t know what my neurologist would think of it but he has been no help in this journey. As for glasses I am 63 and tough on glasses so I purchase from Eyeglass Mart which is national. A plastic frame with progressive lenses and prisms galore run about $90.00. There are days I have used a patch when driving but my other eye is not strong and then gets tired. I then would switch the patch over to the unaffected eye. My tip is never to do that because when you sneeze or laugh or yawn your other eye closes and as we all know won’t open again without help or time. It’s a scary moment with both eyes closed for a few seconds Oooops!

[mlbquiltsgmail-com]

Hi Matt,

Thank you for your reply!

I appreciate the great information.

I just saw Upneeq advertised and wondered about it. Glad to hear from someone who has tried it.

Does using the eye patach at other times help your visio?

Thanks, Michelle

[Deleted User]

I have a similar problem, thanks for sharing the tips.

[ronald-e-clever]

I have had double vision from the beginning of my journey. My ophthalmologist is the one who had me tested for MG.  I have always had prisms in my glasses so that I can drive. I am fortunate to have great insurance from the union I work for. My right eye drops more than my left but I never really noticed until I started reading again and now it presents a problem. It has not closed off completely but I am always looking through my eyelashes. My glasses would cost about $1300 if I didn’t have insurance and still set me back around $500 but I can’t be without them since I commute 90 mins each way to work.   Luckily i have “readers” for use on the computer.. it seems the double vision only effects my long distance.

[matt-sereby]

Just an update on the Upneeq product that I was using. After a month I have found it is totally ineffective. Seemed to work in the optometrist office but went downhill after that. Not to say it won’t work for others, but it is not for me.

[matt-sereby]

At my opthalmologist/surgeon to discuss eyelid surgery as it stays closed involuntarily most of the time. Seeing what his suggestion is. Didn’t know there were so many types of surgery! I will keep everyone posted as to how it all works out

[thomas-arndt]

Hi,

I have had double vision for almost three years and have been using prism glasses for 1.5 years, which usually help. Since I work a lot on the computer and mobile phone, my eye muscles tire particularly quickly.

I read on the internet that vitamin D in high doses was a successful treatment for Myasthenia in Brazil. I have therefore read a lot about vitamin D and it has convinced me that adults need 4000 UE a day and older people double that amount. For almost a year now, I have been taking 5000 units a day, now 7000 units. That is still far away from the high doses which were used in Brazil. As a precaution, I have my vitamin D level checked every six months, so far it has always been in the average range.

For a month now I’ve had the feeling that my eye muscles don’t tire as quickly as usual. Of course, I cannot say whether this was due to the vitamin D administration, but I suspect it was.

After everything I’ve read about vitamin D so far, I can only advise everyone to give it a try. My hope is that in the long run it could bring relief from the ocular Myasthenia symptoms.

Of course, everyone has to decide this, I would also discuss this with my neurologist.

Thomas

[kelly-criezis]

A six week course of prednisone put this into remission for my husband as of now since October

[john-w-carnahan]

I have had ocular MG since 1974 without any period of total remission, but I managed to work through the double vision and ptosis by wearing an eye patch off and on. The biggest problem was the inadequacy of commercial eye patches. My wife and I figured out a pattern that allowed total covering of the eye (they switched back and forth sometimes, so I went to work one day with my left eye patched and the next with the right eye under the patch)and she cut out the patches and a thin cardboard liner, sewed them tougher and attached a thin elastic band. We must have made hundreds over the years because after a while, because of perspiration or wear and tear, they needed to be replaced.

 

[lou-venema]

I have been diagnosed with OMG for about 10 years now, although I had eye problems much longer that were undiagnosed. I went to an opto-neurologist to confirm the diagnosis of my optometrist.

My double vision was never really understood for quite a while. Everyone assumed that it was typical double vision with  side by side images. My left eye vision tilts about 135 degrees to the left.  Finally after much frustration with my VA doctors I had a warm discussion with  new opto-nuero doctor. Finally it clicked what I was telling him. He had some gizmo that he put over each eye and I could turn dials to get the line exactly vertical and level. Then he measured them and determined the angle. Several others tried prisms to no results. I don’t know if this is the way others have double vision or not. It may be worth effort to have your eye doctor try to duplicate the test.

Once they understood my real problem the treatment changed radically. See next message.

[lou-venema]

Now, on to what I have done and now do.

One trick I was told was to do some rapid eye movements, in a circle. That is a short term “cure”.

Don’t stare at anything. It strains the eye and makes matters worse.

To reduce eye strain, and tilt, while working I have different glasses. I have one for computer or model building. I have another for reading. Both of theses are single purpose. They are set to eye tests at specific distances. I also have a third pair for normal uses, distance and near  sections. These are what I use when leaving the house.

IVIG treatments were increased from every 4 weeks to 3 weeks. That has been the most help. That has allowed me to not need glasses during normal days in and out of the house, although I still need help reading.

If I am having tilt issues in the house I can solve that by closing the left eye to get me past the problem. I may have to use glasses for some additional help. The glasses do not help the tilt issue. What they do help with is reducing the eye strain, and thus allowing the left eye to straighten out easier. Closing my right eye will allow the left eye to function “normally” with the tilt gone. My left eye has better vision that my right eye.

I am now seeing a doctor about the droopy eyelids. I am trying to get both eyelids lifted . There typical answer is “Well, if we do that what happens if you go in to remission? There wouldn’t be enough skin to let your eyes close.” They have some medicine they thing may help and we will be trying that out next month.

I am 75 years old and can be crabby. If you don’t like the way you are being treated, or don’t like what they are telling you, get another doctor. Get treated by a neurologist  with MG experience of more than a few patients. Get linked to a nuero -ophthalmologist for eye care follow up. Your optometrist should know one. If you have a training hospital in your state, see if they have someone  in that field.

Be careful with the prescriptions you are taking. Check carefully for side effects, including the ones in the list that are listed with few problems. Every prescription I tried  had some effects that the doctors didn’t know was a problem area. I do have some Mestinon for really bad days or driving on trips.

Sorry for  he long discourse. I hope this helps someone. I realized several years ago that remission was probably not going to happen so I gave up trying all kinds of cures and decided to work around the problems.  Best of luck to you on your future with MG.

[robert-davidson]

77 yo male. First MG symptoms appeared June 2021. Breathing difficulty, double vision, drooping eyelids, couldn’t hold my neck up, weak arm and leg muscles. The Hospital Emergency Room in San Francisco referred me to a Neurologist who specializes in MG. Several doctors at the hospital said he is an expert and has patients coming from around the country for treatment. He is part of a current clinical study on an MG drug. I was in the hospital for 9 weeks. Had 3 plasma flushes and 2 IVIG infusions, plus medications. Was discharged when breathing and muscle strength improved, but other symptoms hadn’t. I’m currently on 12.5 mg of Prednisone (down from 50 mg), Imuran 50 mg, Mestinon 6o0 mg 4 times a day, and Glycopyrrolate (Robinul) 1 mg. I had an at home IVIG infusions a month ago and all of my symptoms dramatically improved; no more drooping eyelids or double vision, no more drooping neck, can now reach over my head with no problem. , leg muscles improved. not as tired. Basically I can do everything I could pre-MG but in moderation. Find a Neurologist who is a specialist in MG, most are not but can do basic treatment. Sounds like you need a real expert.

[thomas-lee-clark]

Butterfly bandaids, strip wound closure. I have a friend that uses them all the time. My skin is so oily nothing sticks. The pirate patch was un-nerving. I got a disk from eye doctor that affixed to my glasses frame. My good eye took over on focus.

[sharon]

I have used an eyelid tape called Lids by Design. They are medical grade, hypoallergenic & Latex free. I ordered them online through there website. Definitely better then anything else I tried. You have to figure out the best way to use them for yourself. Sometime I used them horizontal and other times vertical. You can still use eye makeup to make you eyes look even. Good luck!!

[MikeS]

Sharon:  Thank you so much!  I reviewed Lids By Design and decided to give it a try during my next ptosis eposode.  I found a sample pack on sale on Amazon, and figured that would help me narrow down the size I would need going forward.  Thanks, again!  Mike

[mlbquiltsgmail-com]

Sharon,

Thank you so much for your feedback! I have also ordered a variety pack of Lids by Design. I am so hopeful that they are going to be just what I’ve been looking for!

Thank you, Michelle

[matt-sereby]

Hi everyone. Unfortunately I need to eat some crow. I had been taking a product called Upneeq that I believed wasn’t doing anything for me. Of course I reported that on this chat. Once I quit taking it I was right back to having my eye closed regularly. So here I am back on Upneeq everyday. It has single dosage packs that give you enough to do both eyes along with a little extra in case you miss. Since I only have one droopy eye I put two drops in one eye and then seal the package up with a clip and use another two drops the next day from the same container. They raised the price up to $120 from 105 but it lasts for 2 months so not too bad.

[matt-sereby]

I have surgery coming on the 26th of January for my eyelids. They’re going to add a strap that is muscle from my forehead. When I act excited my eyes will open. In the meantime what I’ve been using for quite a while is dukal butterfly closures which are available from Amazon for pretty cheap. 100 to a pack. I pull my eyelid down and attach one side to the base of my eyelid and then pull it up to my forehead. I’ve learned to wink by scrunching up my eyes from the bottom