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-   -   Vertigo / Nystagmus (https://www.neurotalk.org/multiple-sclerosis/52449-vertigo-nystagmus.html)

jowen214 08-19-2008 04:11 PM

Ack, I feel for ya! I had a 7 week bout of severe vertigo 3 years ago with nystagmus (right before sxs started that led to my MS dx, like you). Last year, I had an almost constant, low-level vertigo for several months. BLECH! Hope you're better!

hollym 08-20-2008 07:56 AM

Thanks to everyone!

Twink - Love the quote - I'll have to keep that in mind but my aim is not so hot

Erin - My vertigo started with my eyes. I felt them becoming less able to focus and moving strangely first. Then, my head started spinning. I have had sensations lke you described and my neuro called it oscillopsia and I actually get that from time to time as one of my "normal" symptoms, but for me that is far more fleeting than the vertigo that lasts.

MSacorn - Yes, good hubby bad lights! Fluroescent lights are my nemesis and have been for a long time. A lot of the time I work in the dark. I really think I need to beg for an LCD monitor, too.:p

Yeahbut - Doing better but eyes are still funny. I hope it doesn't come back as bad as the other day. The only thing I can think of is that I was really tired, so everything was magnified.

Tkrik - I have read about the Valium helping. Interestingly enough, when I had a lot of problems with this a few years back, the neuro put me on Klonipin (also a benzo like Valium) to help with the nystagmus. I hope your DD is doing better. I have had the immobilizing vertigo before and had it last, so I know how bad she feels.

Jowen - You and I must be sisters! When I had this before, it lasted a long time. Not as long as you, but several weeks and then it became more of a low level thing for months until it went away. The first week of it back then, I was crawling around the house because I couldn't really stand up. That led to many tests to determine that it was not vestibular and that it was from the brain which led to more tests for MS. Apparently, the form of nystagmus that I have is pretty specific for being brain related.


It has been about a year and a half since my last IVSM treatment and as much as I hate the stuff, I was longing for some the other day!:eek: I feel all kinds of things creeping in now. This was just the worst one. I still don't feel like I'm back to my normal, but I don't feel as bad as the other day.

I don't see my neuro until October, but I guess I can try to work up the courage to go and get in to see the opth in the mean time. I just hate to have my eyes dilated. He also always acts so sorry for me. He always says there is nothing he can do to fix it because it is brain related. :eek: Makes me feel kind of hopeless!

KajunButterfly 08-20-2008 01:28 PM

Hope you are feeling better Holly. I've had bouts of vertigo for years and it is truly a horrible feeling.

AfterMyNap 08-20-2008 01:53 PM

Oh, Holly, I so feel for you! It's by far the worst horror I've ever struggled with with this bloody disease.

At 19 I was hospitalized for 6 weeks with profound vertigo and the resulting total dehydration it caused me. It was 6 months before I was back on my feet. I've since had 4-5 major bouts with it. Ugh.

I was undiagnosed and it was the first time I was accused of mental illness (I have since received my demanded letters of apology and admission of not knowing from the 7 surviving of the 13 docs who were baffled by it).

Gazelle 08-20-2008 04:51 PM

Git yer butt to the opth, woman. You ain't gonna play shy and not go. You really do NOT want me coming back out there, grabbin' you by the back of the neck, and tossing you into the car to take you there--do you? :eek: Don't tempt me. Cuz if you don't and I have to, then I'm going to go visit Brain afterwards and rub your nose in it that you didn't get to go too.

I had trouble for weeks in late 2005 or early 2006 with that. It really bit the big hairy one. Ick.... I remember the nausea, dizziness, etc. that went along with the nystagmus. I haven't had that for a while, but I still wonder when (IF) it'll come back. Feel for you! :hug::hug:

Get checked out, girlie. Just to be sure.

Erin524 08-20-2008 06:55 PM

I agree...go see your opthalmologist. If it's coming from your optic nerve being wacky, they can give you IV steroids that might be able to help.

FaithS 08-20-2008 07:13 PM

Holly -- so sorry.

Call someone. Opthamologist or neurologist. Should be documented. You still get to decide whether, or how, to treat. You're the boss.

~ Faith

wkikta 08-20-2008 11:09 PM

Maybe keep some of the Meclizine at work, that way you are prepared so it won't come back.

And, Cindy, not too bad, only 6 of the Doctors had to be killed.:)
" 7 surviving of the 13 docs "

hollym 08-21-2008 08:09 AM

Check me out! I'm "multi-quoting" - I can't multi-task anymore, so this is pretty good, eh?

Quote:

Originally Posted by LaPepper (Post 351102)
Hope you are feeling better Holly. I've had bouts of vertigo for years and it is truly a horrible feeling.

Thanks. I am feeling better. This is really the most normal I've felt all week, so maybe it is passing.

Quote:

Originally Posted by AfterMyNap (Post 351119)
Oh, Holly, I so feel for you! It's by far the worst horror I've ever struggled with with this bloody disease.

At 19 I was hospitalized for 6 weeks with profound vertigo and the resulting total dehydration it caused me. It was 6 months before I was back on my feet. I've since had 4-5 major bouts with it. Ugh.

I was undiagnosed and it was the first time I was accused of mental illness (I have since received my demanded letters of apology and admission of not knowing from the 7 surviving of the 13 docs who were baffled by it).

I do think vertigo has to be one of the worst MS sx out there. So debilitating. If the meclizine hadn't worked, I would have seriously had to contemplate drastic measures like the ER.

My struggle with vertigo does not sound nearly as bad as yours. 6 weeks:eek::eek:! The worst I ever had it was several years ago and it was only at it's worst for a week or so, but had it for weeks at a low level after that.

IMHO, you have done your time with that sx, so I decree that you shall never again have vertigo!

Quote:

Originally Posted by Gazelle (Post 351229)
Git yer butt to the opth, woman. You ain't gonna play shy and not go. You really do NOT want me coming back out there, grabbin' you by the back of the neck, and tossing you into the car to take you there--do you? :eek: Don't tempt me. Cuz if you don't and I have to, then I'm going to go visit Brain afterwards and rub your nose in it that you didn't get to go too.

I had trouble for weeks in late 2005 or early 2006 with that. It really bit the big hairy one. Ick.... I remember the nausea, dizziness, etc. that went along with the nystagmus. I haven't had that for a while, but I still wonder when (IF) it'll come back. Feel for you! :hug::hug:

Get checked out, girlie. Just to be sure.

Oh lord, I do need a ride to the opth, but that doesn't sound too pleasant. Oh, and you are NOT going to visit sister Brain without me!

Quote:

Originally Posted by Erin524 (Post 351290)
I agree...go see your opthalmologist. If it's coming from your optic nerve being wacky, they can give you IV steroids that might be able to help.

Thanks. I was actually contemplating asking for IVSM the other day, but now I don't feel as bad. I don't do well with the side effects, but it usually really helps me with my sx.

Quote:

Originally Posted by FaithS (Post 351303)
Holly -- so sorry.

Call someone. Opthamologist or neurologist. Should be documented. You still get to decide whether, or how, to treat. You're the boss.

~ Faith

My neuro is too hard to get into. The opth would be easier, but wouldn't rx the IVSM unless it was optic nerve related. On second thought, the neuro might not rx it either because of the osteopenia. That is why he discontinued the pulse IVSM last year.

Quote:

Originally Posted by wkikta (Post 351529)
Maybe keep some of the Meclizine at work, that way you are prepared so it won't come back.

And, Cindy, not too bad, only 6 of the Doctors had to be killed.:)
" 7 surviving of the 13 docs "

Bill - I just about spit coffee across my desk reading your remark to Cindy.

BTW, I'm keeping the meclizine in my purse. I'm armed and ready for a repeat assault.

tkrik 08-21-2008 08:16 AM

Holly - Glad to hear you are over the worst of it. Carrying the meclizine around with you may be a good idea.


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