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Eye Tics? Any solutions?

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Posted 3/19/2008 10:27 AM (GMT 0)
Yes, Hes ok, getting tired with the eye thing..It takes alot of energy to cope with that all day.Monday is U of M day for contact lenses.Hopefully we get them that day,already saw the nero op, but I don't know the process on this..so....if he gets them that day,maybe it will slow those tics...He was ttaking the rebif & Copaxone together for 6 months while he made the switch to Copax..he said he was doing better on both together..told his Dr. yesterday,he said wait til after the MRI ..April 2. and we see him on the 18th I think...he will dicuss it then- on going back on both,,he may suggest Tysabi..like he did last time,,dont know yet,will know soon though. Thanks for asking..Deb
Posted 3/20/2008 3:14 AM (GMT 0)
I pray for him, I see my son who's gonna be 31 in May and I thank God he's healthy for the most part (his greatest problem is osteoarthritis-hereditary) and feel blessed and think of your son so young dealing with my issues and worse. So hoping the docs figure out the best for him. Will be praying solutions.
Posted 3/21/2008 1:27 AM (GMT 0)
Thank You Deb....It's hard to believe at times,ya know.Its alot to deal with,for both of us.He's a strong young man with lots of hope and faith. I pray for a cure..for all..Deb
Posted 3/21/2008 11:19 AM (GMT 0)
I'm just chiming in here to agree with others. My eyes bounce as well but thus far havent in front of alot of neuro's. I think 2 did turn the light off and do what gmom said and noted it. I dont take meds for it though, due to the fact that i already take neurontin and baclofen as needed.

It really depends on how much its interfereing with your normal activity. Mine tends to always do it when i drive (the sun really induces mine)

I also have eye twitches and when they do this together , i have some pretty funky jerking going on.

I'm not certain of which causes the double vision ive been having but it might be a combo of both.
I hope that you feel good to at least know this is not uncommon and alot of us have this as well.

I also have migraines, immitrex works but as of late a spinal doctor induced a headache (to ensure he got the right nerves) then numbed them. Its the first time ive had it done and im not sure ill repeat it. I cant keep taking immitrex daily though (well thats what the spinal clinic said) and my migraines are almost daily now.
They feel they may not be true migraines but a lower and greater nerve that runs from base of head over your head, thats why they have injected, ill keep you updated as to their success or failure.

I like the mom who emails visible symtpoms to the neuro, it takes alot of the explaining out of it and keeps one from forgetting to mention a specific problem.

thanks

kiera
Posted 3/21/2008 12:20 PM (GMT 0)
I hear ya on the tics, Kiera, mine just annoy me but I've connected it so far to the neuritis and generally precedes a migraines approach. I don't get them as often anymore since on Topamax daily, but about 3-4 times a month, they'll hit but not as hard... when the eye tic strikes, I've checked that eye (rt) and it's usually pupil enlarged and the migraine on the way (always right sided too) so I figure there's a connection witht he inflamation of the right eye now. I plan to discuss it with the neuro on next visit.

I took imitrex at first and it laid me flat afterwards, so I used dissolvable Maxalt now cos I can keep functioning afterwards and the headaches eases away with very little side effects. 

And yes, it feels better knowing others know what I'm talking about... hubby is not quite in tune yet and though he sees me stumble, stagger, trip, sway, be exhausted, suffer these headaches, he still just says, slow down, you're doing too much, or you're causing it stressing out... which kinda discounts the fact that a disease is underlying the whole thing.  I think a part of him is in denial about it yet, so I plan to invite to my next neuro visit or the one the neuro says he needs to hear... he's not a big believer in doctors and whatever he can't really "see" he just doesn't think really exists. However he knows nerve pain from his own experience with a virus in his long thoracic nerve this last spring that has left his shoulder weak... of course, that's different it was him! ;) I think God was trying to give him just a little taste so he could relate and he still can't.  So be it.

Posted 3/21/2008 1:36 PM (GMT 0)

Hey Deb,

Bringing your husband is a great idea.  Those without husbands (or wives) may want to consider bringing someone supportive to their neuro appointments.  It is always good to have an extra set of ears.  Those appointments can be stressful, long and it can be very helpful to have someone else there to hear all that is said.

My husband has gone to all of my neuro appointments.  It is a real team effort.  My husband and Doc happily talk about me like I am not there when she questions him as to my memory and moods lol.  I have to remind them that I am right there!!!  So by all means, husbands, wives and other significant people should attend these important appointments.

Love and prayers,

Posted 3/21/2008 11:11 PM (GMT 0)
Ya know, alot are suffering with this eye problem...What a nightmare..My son gets no relief, only by meds..he stuck with it always.So we will do permanent things to fix it..now.Its been so long.Hope is coming soon..Ihope. They aren't promising a miricle but some relief with the surgery.He can't go into the mall or a large store,his eyes go nuts.When he gets back in the car his eyes settle down and hes ok..Its too weird..The Dr. says some people eyes are worse than his and they get around fine,then some have alittle movement and they can't walk and are all off balance..I don't know? I pray it will stop, so he can have a little more of his life back..Just my thoughts..
Posted 3/22/2008 12:43 PM (GMT 0)
Hey Keira, Neurontin & Balcofen does help with the eye jerky, for most,I am told..We tryed Neurontin for a short while, but it made Rick dizzyer..How do you take it? We had to do the ramp up process....What do you mean by saying you take it as needed.? He also wears green tinted sun glasses, by experiments he says the dark green tint lenses help cut the glare and brightness, he can see clearer than just darkening everything..while driving.
Posted 3/24/2008 2:52 AM (GMT 0)
Gretchen, thanks for the reinforcement, I think it's gonna take that though to 'convince' him there's truly and issue here. He's one who just figures if you look ok, you are ok! Though he's been a bit more understanding since he got hit with a virus in his shoulder last spring and said it was the most excrutiating pain he'd ever experienced... I just couldn't help saying, "oh really?" He was somewhat amazed to learn that's sorta normal sharp pains for me periodically on a regular basis and a definite pain when exhausted or overworked and taxed out. But he listens to docs so yep, he'll be coming.

I'm finding my night driving to be very risky and this just kills me but I'm probably gonna have to plan to limit that night time driving stuff.

I'm hoping the neuro's got some antiinflamatory he can give me for the ON and help reduce it somewhat.

Posted 3/27/2008 11:57 AM (GMT 0)
Hey Deb, just wondering how things are going... I know you're waiting on appts coming up but just hoping all is good as can be for y'all. :)
Posted 3/27/2008 2:00 PM (GMT 0)
Yeah Deb, been busy....Yes yes yes yes yes...The contact lenses is the answer...we did a test @ U of M..ya know a fitting..anyways It worked,STOPPED IT..it will be a little difficult cause they are the hard lenses,but breathe-able..It was almost remarkable..it was only for 15 minute(the test for fitting)they have to order-special because hes 20/20..and they don't have any in stock without presc.She said hes the only patient there with Nystagmus that doesn't have a vision loss. Next Friday they will be in..and we are excited, but still you can never get to anxious.Thanks for thinking of me...Deb..you OK?VIEW IMAGE
Posted 3/28/2008 12:52 AM (GMT 0)
Yay for the contacts!  Glad to hear it worked so nicely Deb!  That's such good news and surely a great relief for your son!  I'm very happy to hear the success on the first time trying out something new like that, great!

I'm all good right now, a little perplexed with the "nothing abnormal MRI's" but then I'll wait to talk to the neuro before I think much more. Reading alot, learning alot, coping with it. Everything fits, I just might not be showing anything definitive yet. He's gonna love it! (Not!) :)

Posted 3/29/2008 1:38 AM (GMT 0)
Ya Deb, I'm excited too..I hope everything goes well.We should get them next Friday. There is always that nagging doubt if it will work in the long run, that troubles me,cause everytime we get excited about somethin, new med or what ever, we seem to always get let down.I guess it's common feeling with this illness.But since the trial a few days ago,he has had a few times where it has stopped on its own.Thats a first since last year.It may have some theraputic aspects to it,they say.One never knows..
So nothing has been found in your MRI's? What does that mean? Do you know yet?I don't get it?Whatsupwiththat?
Posted 3/29/2008 4:00 AM (GMT 0)
Am praying the best outcome for y'all Deb! It's always good to have hope for the best!

Yeah, the nurse said "nothing abnormal" but I'll wait and let the neuro explain it further, he's been known to mean otherwise with stuff or clarify there might be something but it's not quite definitive etc... so heck MRI's aren't perfect, he'll just be befuddled and challenged which he likes but hates not being able to figure out!

Most everythings the same... a little more imbalance (like nearly falling off bleachers tonight cos I thought I was forward prone and realized suddenly I wasn't... good thing it was the still down low!) :)  and the sight is alot more blurry in the right eye these days but other than that same old same old so maybe I'm moving out of a flare up a little bit... wouldn't that be great! :)

Otherwise waiting til May for the visit with the neuro... we shall see and hear then. :)

Posted 3/30/2008 9:37 PM (GMT 0)
Ya know,my son carries a cane, he ordered it on line, from the TV program HOUSE.Its got the flames on it just like Dr.Houses.Even though he seldom needs it,when he does, hes got it there for support. Maybe it wouldn't be a bad idea to give hubby a visial reminder..Hello, earth to hubby?
Anyways, MRI is Wed.Keep a prayer for us Deb.Thank you.
Posted 3/31/2008 2:57 AM (GMT 0)
It may come to that sometime Deb, it may... but for now... it's just weird when I'm off balance. 

Will be praying good results with the MRI, or as good as can be expected! :)  Lotsa hope!

Posted 4/2/2008 11:40 PM (GMT 0)
Made it though the MRI today he went by himself,drove the hour to get there,had head neck spine area done.Two more days till he gets his contacts, hes so excited.God Bless him.Praying for good results with that.I think hes planning a shopping spree, cause his got his income tax money,and he said hes going wheelin around town.God will bless him, and give him some releif with this-to get his life back.Lotsa hope :) Deb
Posted 4/3/2008 12:24 AM (GMT 0)
Hey Deb!

Wow!!...good for him!! I don't know if u know this or not, but for those mri's u can ask for and usually get a copy of both the film and the cd...as well as the radiologists report. I always try to encourage others to get this because of the long process of not only getting dx'd, but also of the care u'll have afterwards. It's just a good way to provide a bit of a baseline should u need it for new docs should u have a need to see one. I hope his results are good and that he gets those contacts soon. I'm sure it'll be a much needed relief for him and u!
Posted 4/3/2008 2:17 AM (GMT 0)
Yes..I do have the MRI's on CD..Alsos the reports, The last one was hard to read cause it said something to the effect that the one leision showed some progression.I didn't want my son to read that cause I was not sure what it meant?Did it mean, he has progessive MS, or did it mean damage from the one leision,progressed? which was huge? Who read it @ U of M ? Am I in denial ..Yes...He's had no relaspes in 14 months ,since the bad one.Just this stupid Nystagmus.hanging around..Hes testing heel over toe ..finger to nose all those tests have improved drastically, from one year ago.He can do all that, and no brain atrophy.on MRI.The leision was 3/4 of the brain stem,6 month(later) of copaxone & Rebif together, that lesion was a pin point..at last MRI.So.Thats why the DR said Tysabri...until he saw that MRI..he said it was totally remarkable!! These last 6 months it been Copaxone alone.He not doing as well strengh wise,he has asked to go back on both drugs together again.They will deceide on the 12th, they want to see this MRI first.Anyways I guess I needed to vent all this cause the ball is going to start rollin again.And 1MOM needs to settle her nerves.
Thanks for your reply Rhonda and thank you for listening...God Bless
Posted 4/3/2008 2:26 AM (GMT 0)
Hey 1mom

No prob at all. Vent all u want and as often as u need. We all need to just talk sometimes...and that doesn't always mean we need answers...just to be heard. I dear and very special friend taught me this recently. Lean on everyone here and we'll prop u up.
Posted 4/3/2008 10:27 PM (GMT 0)
Great news, Deb! I'm so happy for your son! I will be praying it all works as perfectly as it looks like it will and without any relapses that's even better! Happy 'wheelin'! :-) I like to hear the good report on the meds too, that's great progress!

Rhonda, thanks for the tip on the MRI... cds and reports... I'm gonna ask for them now... this is kinda annoying waiting forever, then getting the whole "nothing abnormal" preliminaries... leaving me to wonder forever. I'm in a funk about feeling rotten, staggering, imbalanced, lightheaded, vision crud happening, (hubby says tonight I feel hot, yep, feeling rotten all over) etc... and "nothing abnormal"... gotta just hang on for the May appt... I'm on the cancellation list if anything comes up but man, these neuros get so booked ahead.

So thanks for the tip on the CD & reports!

Posted 4/4/2008 12:08 AM (GMT 0)
Thanks Deb,(& everyone else) I'm feeling really good today & so is Rick,One more day..one more day...I always seem to have feelings that always seem to be on target.I'm feeling great.God is lifting me up...I'm positive and strong.Although,my prior writing may say different.Don't believe my weak moments.I just get tired.The people at his work are so great.His boss is senting him to be a their consultant @ Ford Mo Co. I guess they are waiting for his contacts to come in, so they can see, that he'll be able to work in different surroundings.How wonderful for him.He is a brillant young man,charming, handsome,kind,and gifted in so many ways.I have be blessed!Thanks to all that have been listening..say a pray for us .Please, the next few weeks are so important.Love..1MOM Deb also.
Posted 4/4/2008 12:11 AM (GMT 0)
Hey Deb

One more thing on the mri's ....u can usually get the report BEFORE the doc has it. I love to do that because when i get that call from the doc's office telling me all is ok i can be ready with any questions i may need to ask. Of course this is much more helpful if something is seen on the mri. Just fyi. Take care and im glad the tips helped!
Posted 4/4/2008 1:06 AM (GMT 0)
Didn't know that Rhonda! Interesting. May have to look it that..Thanks
Posted 4/6/2008 11:06 AM (GMT 0)
Ajustments have to be made to contacts.They fitted son in the office, contacts were great.Well what they did was customized for his eye size, and that is the problem.They fit perfect.Makes NO sense does it.Well the standard (off the shelf)contacts they keep @ U of M were great.The fit is too good and contacts move with his eyes.The other pair he tryed on were not, so it forced his eye to find the center of the contact len,and kinda locked it.Inturn the drift and shakyness stopped.Ruff couple days with dissappointment for both of us.But his dad talked to him,told him hes been wearing contacts for 25 yrs,and this can be fixed.So, on we go.
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