Vertigo Anyone?: Yup, I deal with this. It... - My MSAA Community

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Vertigo Anyone?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
β€’18 Replies

Yup, I deal with this. It's not fun. Especially if you're on a step stool.πŸ˜’

Anyone else get this? Did it get bad? How do y'all deal with it?

If you're new here, please jump in. Tell us your experiences. What works for you might work for someone else! ☺️

J🌠

TY positivewithms.com

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Jesmcd2 profile image
Jesmcd2
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18 Replies
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rjoneslaw profile image
rjoneslaw

I can get really dizzy.

When this happens I have to sit down or lay back down

Sometimes I have to drink some kind of juice or eat some kind of candy because my blood sugar is low. I have actually pasted out because of this when I was younger.

twooldcrows profile image
twooldcrows

yes have to always go slow when wanting to turn around or i will fall or feel like i will bet sick to my stomach...it can be the pits sometimes for have to grab something fast to keep from falling over ...just have to try and be careful....

greaterexp profile image
greaterexp

I only get it when I move! Actually, it comes and goes no matter what I’m doing. But sudden turns and looking up are generally what bring it on. In those cases, it usually passes quickly once I stabilize my position. When it hits for no good reason, I have to take Dramamine and go to bed to fight the nausea.

Frances_B profile image
Frances_Bβ€’ in reply togreaterexp

If it's movement related and generally happens when you turn suddenly or look up then it's probably Benign Paroxysmal Positional Vertigo (aka BPPV). This can be quite readily dealt with by having Epley Manoeuvres done by a physiotherapist who is trained to do them. This is not always a long term fix, many people need to get them done every so often when the BPPV returns.

physiotas.com.au/benign-par...

mayoclinic.org/tests-proced...

Epley Manoeuvres can be very unpleasant for a minute or two while being done as they make you extremely dizzy but the relief afterwards is pretty much instantaneous.

greaterexp profile image
greaterexpβ€’ in reply toFrances_B

I've had issues with BPPV before, but fortunately, in many way, this is different. I really do think it's related to the MS, and my neuro agrees.

Thank you for posting this, because I think it is more common than I ever thought it was, and I'm sure there are those here who suffer from it.

stripybutterfly profile image
stripybutterflyβ€’ in reply togreaterexp

Have you had a Videonystamography test?

Ask for a referral to Audiology, they have lots of tests to differentiate between BBPV, labrynthitis etc and neurological vertigo.

Frances_B profile image
Frances_Bβ€’ in reply togreaterexp

It's probably still worth getting a physio to do the Epley Manoeuvres and see what happens after that. It doesn't have to be one or the other - I have both types of dizziness/balance problems - BPPV and MS related ones. So, especially looking up may cause the BPPV related "incidents" and others may be your MS (or, as stripybutterfly has suggested, some other type of problem). Looking up is the most classic BPPV trigger - it's why BPPV is sometimes called "Top-shelf dizziness" - the movement of the crystals is caused by tilting your head backwards as if trying to see what's on a high up shelf. Ditto for when you get your hair washed at the hairdressers in one of those "lie back and relax" sinks they have.

As always, don't let people (including your neuro) push you into believing that everything is caused by MS and do get it checked out further. Dizziness is such a horrible thing to deal with on top of all the rest of the crap that MS throws at us.

greaterexp profile image
greaterexpβ€’ in reply toFrances_B

Thank you. Good points.

Kenu profile image
Kenu

Yes, I have it every so often. I think I am figuring out what starts it off. Not eating right for couple days and it comes on and stays couple days ? So I’m trying to watch closer and confirm it. Mine is more dizziness than vertigo. I just keep working thru it. Doesn’t bother me sitting down or laying down, just while standing and walking, crazy 😜. Ken πŸΎπŸΎπŸ™πŸ˜‰

Allen5280 profile image
Allen5280

Yes, I've been dealing with it bad yesterday and today. Every time I turn my head I get these intense spells of dizziness it even changes the pitch of the ringing in my ears. I've been bouncing off the walls, falling into my chair or to the couch depending on which way I fall towards there are only a few feet in my travel trailer where I dont have someplace to grab onto but one way I meet the couch and the other my chair. My recliner is being held together by fabric in some pieces from all the falls into it and the spastic thrashes I do. I am the destroyer of furniture, they dont make anything that withstands the force I put onto it. Not that I could afford anyhow.

pamgarner profile image
pamgarner

my question is this,what are you doing on a step stool or ladder with ms,did you have someone else there??scary!

Texandyroe profile image
Texandyroeβ€’ in reply topamgarner

That was my question, too. I cannot even step onto a one step high step stool without getting vertigo.

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply topamgarner

I learnt my lesson, believe you me!! That was the only time that I got on one that didn't have a wall by it!πŸ˜“ Now I test myself, if I can go up one step, I might make it up the second, hanging on the wall for dear life!!🀣😭🀣 That way if vertigo hits, I have it under control, I hope.πŸ™πŸ€—πŸ’•πŸŒ 

pamgarner profile image
pamgarnerβ€’ in reply toJesmcd2

don't cha just hate hard lessons

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply topamgarner

Oh yeah! That was the worst episode ever! πŸ™ Lived and never to be forgotten! β˜ΊοΈπŸ€—πŸ’•πŸŒ 

JTZES profile image
JTZES

I live with this constantly. My MS has pretty much wiped out my vestibular system that controls your balance and crystals in your ears. I have worked with a vestibular therapist with no improvement of my problems. I've become a wall walker.

This is also a visual issue and how your brain is trying to interpret your movements as well as all the other things going on around you.

Example- I can not go to the grocery store. Look at each thing I am doing is an individual movement. 1-Moving forward pushing the cart. 2- Turning my head to watch out for other shoppers. 3- Having my head turned to scan the shelves. 4- Moving my head up and down to find the product I am looking for. My brain has no way to process all this movement at the same time other than becoming extremely dizzy and the dizziness generating extreme nausea.

The only thing that helps is high doses of daramime and valium. I have 3 different nausea meds that I take.

That's my life with no chance of improvement.

For those that have infrequent bouts of vertigo that can be cured by the vestibular therapist.

mrsmike9 profile image
mrsmike9

I've not had that until just this past weekend! I got up in the night and went to the bathroom. I stood up and went to the sink to get a sip of water and the minute that water went in the world went around. I knock a bunch of stuff into the sink while I somehow got back to the toilet to sit on the lid. It was crazy! I had to sit there for quite awhile before I could go back to bed. Didn't get up fast or anything. Was fine until I took that sip of water! Who knows...

JTZES profile image
JTZES

During one of my bad exacerbations I to spent a night on the toilet hanging onto the door knob to keep from falling off. My wife was out of town and my 16 year old daughter was not able to help to get me stabilized.

It took a squad and and 3 EMT's to get me off and 2 days in the hospital before I could stand upright. I found it to be very funny after the fact.

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