Double vision & drunk sailor walk again!

[sjconner]

Today, at about 11:00, I suddenly had double vision and what I call the drunk sailor's walk. I have had this a couple of times before and it lasts for a few hours. I have been, for about 6 months, on lamotrigine 200mg twice a day. Last night I started 100mg tegretol twice a day. I called the neuro and he told me to back off the new med. Then I am supposed to take 50mg twice a day. The neuro is trying to get me into an epilepsy center. I have tried 7 different med combos in the last year. I know it is "all in my head" but which version? Structural, electrical or psychological?


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[Dolores]

I'm truly sorry for you. I take Dilantin and while I've only experienced double vision once it was scarey. I was driving down the thruway during rush hour when the car in front of me suddenly became 2 cars. I got off the thruway, turned around and went slowly home and then to my doctor. Turned out my Dilantin level was at 43! And here I just thought I was coming down with the flu.

I also experience the drunken sailor walk though I call it my epileptic walk - a neurologist watched me walk into his office and said "yes you have epilepsy I can tell by your walk". Now I realize that when it gets to the drunken sailor level and I'm losing coordination and feeling depressed that I'm probably overdosing on my Dilantin. Not fun but it does control my seizures so I'll deal with these side-effects.

Hope you're able to find an medicine combination that works for you so you can get on with the business of living.

Take care :hugs:

 

[valeriedl]

I get double vision sometimes. To get rid of it I usually have to lay down with my eyes closed till it goes away, which may be 15 minutes to a few hours. I told my neuro about it on my recent visit and he said to keep track of how often it happens. He didn't say which med might be causing it but one of the meds that I take is tegretol.

When I was first diagnosed, 10 years ago, I don't know how many different meds and dosages I went through over the years before I found something that worked for me. I am still having seizures though. I hope you get into the epilepsy center and find something soon that works for wyou..

 

[arnie]

I had that drunk sailor walk a few weeks ago for about 45 minutes one morning. I was out taking photos and when I changed position, started walking, crouched, almost anything, my equilibrium was pretty much gone. I had to climb and descend a couple flights of steps, too, and I was really careful to hang onto the railing and not trip. I have no idea why that happened. I also get blurry vision at times, not double, though. I'm also on 200 lamictal, twice a day.
As far as finding individual or multiple meds that control our seizures, do you think anyone here has complete control? Zero seizures? Without completely intolerable side-effects? I really doubt it. I think most of us try for some sort of balance between having few enough seizures to function and few enough side-effects to function.

 

[Belinda5000]

I've had that drunk sailor walk plenty of times with all the meds I've been on and the fooling around with my doses and double vision I know it well.

 

[JaneP]

This all brings up a question......
What do/can you do if your neurologist flat out won't listen to what you tell him -even when you get this way on drugs? I've seen a total of 7 neurologist in the last 20 years (2 just this last year). NONE of them listened to what I was concerned about. 1 of them wanted me on so high a dose I looked & felt like I had just downed a bottle of Jack Daniels, if you will. I was up by my mother for 2 weeks because I couldn't get dressed or anything alone. (She was afraid to go anywhere if I'd lose my balance walking at home alone!) I tried to tell him how I felt and he took the attitude of "Well, then I don't want to see you anymore if you won't take what I tell you."
I'm not the only one that I know like this. There's someone I know who's seizures are 10X's more frequent than mine and she's gotten the same -if not worse- treatment than me. Her neurologists she's seen all insist she's faking them!
What in blazes is wrong with the Dr.'s in this Country today??? What the heck are they being taught in school??? It's more than just a personality thing when you have 6 or 7 or 8 different ones all acting the same way. I even looked at the one who doubled my dose & wouldn't listen and finally asked him; "How does this fit into your oath you took to "....keep my patients from harm & injustice" and "....prescribe regimen for the benefit of the sick according to my ability & judgment"?? No answer. I then flat out asked; "How much are these drug companies paying you to give people more than they can handle?" (DUH! What else could it be?) His only response was; "We're not allowed to take anything from them." Like puhleeeeezzzzze! We all know Congress does it, and it's illegal for them too! Why the heck else would you do such a thing to people who are supposed to trust you with their lives unless someone's paying you by how much drug they sell? (More prescription means more sales which mean more profits) It doesn't take a genius to put that together!
If it's the insurance companies & the "have to see so many patients a day for a certain quota" thing I've heard, then why don't these doctors across the Country get together, use their decent judgment and common sense & tell these insurance companies they won't stand for those kind of regulations if it means sacrificing people's health -and possibly their lives?? What the heck is wrong with them today? How long should it take to find a decent Dr. who cares for more than just his wallet & being friends with Pfizer, Merck, Medicare, and whoever else??

 

[Belinda5000]

Jane find a neuro that will listen there on line now and you can look them up find out about them before you see them.I have told my neuro before that he wasn't leaving the room until he heard everything I had to say and I saw him 30-40 minutes.
My neurologist wants to know about all my sz's since I'm not controllable.
my neuro called mine pseudo sz's once until he put me in the hospital and he walked in on me having a full blow tonic-clonic and he said he didn't know why he was calling them pseudo sz's said that in front of my hubby.I have like 6 different types of sz's myself.It can take a lot of different combos before one works I've never had a combo that controlled my seizures.

 

[JaneP]

Unfortunately reading about them on-line doesn't much work (at least what I and others have seen). The last 2 sounded like they would be perfect (in fact, I had 2 people say "Oh! Dr. ____ He's good!" (dare I mention his name here?) Well, that was the one even my mother (who's more able to "read" people than I am and think quicker) said several times she didn't care at all for his "professional" attitude.
I just don't understand why things have gone this way in the last 25 or 30 years. Like I said before, good manners, decency, and such should prevail before their wallet or making their quota every day. What's wrong today?
By the way, from what I've heard from others it's not just neurologists acting this way

 

[Belinda5000]

Jane sure mention his name mine is Dr.Hedaya at Crawfordlong in Atlanta

Belinda