Anyone had >2 month relapse?

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Anyone had >2 month relapse?

Postby Grumpster » Thu Aug 21, 2008 1:34 pm

I have had wicked vertigo and balance issues for about 2 months now. I thought relapse at first, but after IV steroids and time has passed I am still really screwed up. I can hardly walk a straight line and I am SOOO DIZZY. I fear that this is a general worsening. I have not really heard of people having this type of ordeal last so long as a relapse. I have not really heard of 2 month vertigo as an MS symptom at all. Does anyone have anything else on this? VERTIGO Sux!! I do not think I can continue feeling so damn screwed up. Anyone got any treatment ideas? The docs do not. That is for sure.

Another grumpy depressing story...sorry...
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Relapses and Remission

Postby Shayk » Thu Aug 21, 2008 6:13 pm

Hi Grumpster

I've not had vertigo as an MS symptom but I do think relapses can last longer than 2 months. Pre-diagnosis I believe I probably had two--they came on slowly and lasted a while.

Here's an abstract that puts some "time" on relapses and recovery.

Multiple sclerosis: relapses and timing of remissions
The frequency of improvement was 78% at 3 months, 86% at 6, and lower in males (65 vs. 81%).

The frequency of recovery was 55% at 3 months, 71% at 6.

Kaplan-Meier curves showed stabilization after 6 months, with improvement in 90% of patients, 100% without further relapses.

Relapses without recovery were only 30%; 15% excluding short-term relapses.

So, I wouldn't give up just yet in thinking that it's a relapse. Vertigo has to suck--sorry I don't have any ideas for what might help resolve it though.

Sharon
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Postby freiguy » Thu Aug 21, 2008 6:43 pm

Grumpster,
My whole introduction to MS was caused by vertigo. It's an unbeleivably crappy feeling for me. I would rather have a leg cut off then to deal with this feeling. My vertigo relapse was coupled with bladder problems and I was numb from the waist down. I could walk as long as I was watching my feet hit the ground. The bladder and lower body thing lasted about 4 weeks but the vertigo is still present but to a little lesser degree. I am in the CAMMS323 study and I received my campath infusions in July. A side effect of campath is the re-awakening of old MS symptoms and on que my leg numbness and bladdder stuff came back right away with the vertigo not far behind. I am looking out to the next 6 months where I am hoping to see very positive results from the treatment. What drugs are you taking right now? Good luck with everthing.
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Postby Wonderfulworld » Fri Aug 22, 2008 1:18 am

Hi Grumpster
10 years ago during my biggest relapse I had severe vertigo. It lasted 3 months and I was on seasickness meds. It really is the most horrible feeling, I empathise completely. It took about another 3 months to go, so about 6 months in all. I really hope it lifts for you soon.

One thing that I found helped was gentle exercises. I laid cushions all around me so that when I toppled I'd something to sink into. Really the last thing you feel like is exercising but it seems to help retrain the brain back into knowing where it should be balancing. This webpage is a good resource for discussing the options for vertigo treatment: http://www.msrc.co.uk/index.cfm?fuseact ... ageid=1699 and this webpage here shows balance exercises for vertigo: http://www.webmd.com/brain/balance-exer ... or-vertigo

If ever there was an oxymoron! - balance exercises for vertigo :lol: I toppled over for the first few weeks but I believe it helped over time.
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Postby MrsGeorge » Fri Aug 22, 2008 2:58 am

I've not ahd vertigo but I have had relapses that last over 2 months. I had a relapse at the end of may that was only starting to get better when i had my current relapse 2 weeks ago.
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Postby Loobie » Fri Aug 22, 2008 4:54 am

Grump,

I've had it for well over 2 years now. I tell everyone it's my worst symptom because I am semi-nauseaus just about all the time and hardly ever have a hearty appetite. I've been force feeding myself (especially lunch) for years now. There are two things that eleviate it. One we've talked about before is MJ and I know you have other issues with that. I only do that in the later evening now because while it helps that significantly, it now seems to zap leg strength. The other is what WW said; exercise and also vestibular exercises. My neuro. told me about those. If you have a good sized bed, sit on the end of the bed in the middle, pick out a spot on the wall. Keep focused on it and allow yourself, or force yourself, to fall to the left and to the right while keeping focused on the spot on the wall. I have no earthly idea why this helps, but I don't know why exercise does either. I even had vertigo when I was still able to run, and if you can run, that was the best. I would be ready to vom., and if I took a run, it would stay gone for usually the rest of the evening. I can still make myself sweat on the bowflex doing upper body workouts now and, as WW said, exercise works for it. God knows why, but it does. It's almost like you push yourself 'past it'. Also a low dose of diazepam (not enough to make you tired) like 2mg sometimes helps me too. Believe it or not, you can sort of get used to it over time, but there are still times when I have to shut out the lights, put the fan on me and close my eyes or I'll get sick. I hate it, but what are we gonna do?

I tried Antivert (meclizine), but it was like taking a Benadryl; I couldn't keep my damn eyes open. It works, but I think it just knocks your ass out. I still have like 20 of my original Rx of 30 and I got them like 3 years ago. If you can tolerate Antivert, give it a try, but it knocked me out.
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vertigo

Postby paul2008 » Fri Aug 22, 2008 9:32 am

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Last edited by paul2008 on Mon Apr 22, 2013 9:23 am, edited 2 times in total.
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Postby Lars » Fri Aug 22, 2008 7:02 pm

1st incident, about 8 months. after that, 2 or 3 relapses over 4 months. Finally gave in to steroid treatment during the last which had been worsening for about 3 months. Since diagnosis, MANY more months in relapse than in remission. Mom always said I was stubborn.
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Postby Grumpster » Sat Aug 23, 2008 8:19 pm

I did not know that Mega-Vertigo was a common MS symptom. I thought ON was terrible. This takes the cake for me. I can not really function because if I look up, down, or even sit up, lay down, whatever I feel like someone hit me over the head with a bat and threw me out of an airplane. WTF that is no way to go about life. i tried valium 2-5 mg periodically during the day and thatdoes seem to help some. I am not really nasauos (sp?) anymore. That was horrible for the first few days and now it is more just spinning and falling through space.

I have some meclazine laying around in the med graveyard. I may as well try it, but I thought it was more for the nasauos feeling and not the spinning.

Loobie - I am doing some of the vestibular manuvers and excercises and those seem to help a bit. I am supposed to do a few 2x a day as per my therapist. Hard to do balance excercises when dizzy though.

Had acupuncture yesterday and I plan on having a few more sessions real soon to see if that can provide some relief. Thanks for all the comments, any other suggestions are welcome.
G-
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Postby haywood » Thu Aug 28, 2008 3:08 pm

My first experience was on Jan 14th I woke up got out of the shower and was sweating profusely, and extremely dizzy. I called into work thinking I had the flu and literally went from only the couch to my bed to the bathroom for 4 weeks. I couldn't even make it to the doctor. It hurt to even have my eyes open and every time I woke up I wanted to cry. I was only comfortable when I was sleeping. I slept about 16-18 hours a day. That has past now but for the last 3 months my legs have been very unstable and my right side (manly) my hand is numb. I switched from Avonex to Rebif and I just want my legs and hand back. I feel your pain
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Postby Grumpster » Fri Aug 29, 2008 9:53 am

Haywood, that sounds terrible. I am on Rebif and I believe it has a better record than Avonex. The vertigo is totally debilitating. This week I was out in the field at work and it came over me. I started sweating badly and the world started spinning. I was inspecting a manufacturing plant, unannounced and it was the first day. I told the CEO my back hurt--yeah right -- and I had to go. It was the first time I have had to bail out in the middle of a job. I am off to another acupuncture session today and then again tomorrow. It may help, I do not know. I hope you get some feeling back in your legs / hand. I have been really wobbly with the vertigo and my strength is not too good either. It looks like I may have to stop my career and move out of CA. It is too expensive. Maybe I can buy trailer and tow it to Kentucky somewhere and just live there? I hope not....

Seriously I hope you feel better. I hope I do too. >2 months now with this crap and I am at the edge of sanity. Take care-- G
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Postby jimmylegs » Fri Aug 29, 2008 9:59 am

b-complex, magnesium. try. hope it helps!
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Postby Punchy » Fri Aug 29, 2008 10:51 am

Another vertigo sufferer here.
I don't think people realize just how bad it is; when I was at my worst it occurred to me that I wouldn't want to live if I had to feel that way for the rest of my life. A terrifying realization.

My first vertigo relapse lasted about three weeks altogther. I didn't get any treatment for it, it just went away. Then I had the mega relapse last March and it wasn't until the beginning of June that I felt human again. I walked with a cane for about two months.

It still lingers at the corners of my vision and it comes back when I exercise, have sex *ahem*, or get overheated. And sometimes I'll get a mini attack for an hour or so then it goes away for no reason. The only thing I find helpful is to cool off and stay away from the TV, the Internet or reading. Closing my eyes does NOT help but focusing on an object does - Loobie's exercises seems to explain that. I am SO TIRED of people giving me helpful advice for inner ear meds and treatments. They just don't get that this is inside the brain stem.

I took SoluMedrol with the last relapse but I am unsure if it helped. I took so long to improve that I suspect it healed on its own. The best cure so far for me was pregnancy, but I guess that's not the best option for everyone. :wink:
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Postby Grumpster » Sun Aug 31, 2008 1:07 pm

Punchy wrote:Another vertigo sufferer here.
I don't think people realize just how bad it is; when I was at my worst it occurred to me that I wouldn't want to live if I had to feel that way for the rest of my life. A terrifying realization.:


That is how I feel right now. This has to end. Life is not like this. At least it should not be. I am going to try to go back to work on Tuesday. If that does not work I am going to pick up a coon dog, tow a trailer to Kentucky and veg out somewhere till eternity.
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