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Lkaibel

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Today, Brian went the Emergency Room because the ALS clinic said his massive, room spinning vertigo attacks starting last night might be a stroke.

Well, we spent four hours there and no stroke, no heart attack but they seem to think he has inner ear issues. He was referred to an ENT but we are not going to bother with the actual one he was referred to due to being told they would "call him in seven to ten days to schedule an appointment". I have experience with another one I loved who accepts Medicare.

Brian also has some nausea and "crickets" in the ears. They did a CT scan, blood work, etc. Movements seem to set it off, and it comes in spells. Brian takes Rilutek but everyone is swearing it's not a med side effect. They are giving him motion sickness pills for now.

Anyone else have experience with this?
 

Nikki J

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I had it a year before I started this. It was absolutely horrible. I sent someone to get over the counter meclizine ( bonine I think it is called) and the next day I started the exercises / maneuvers. I could not do them the first day as my symptoms were too severe but they helped. I was ok in about 3 days. I never saw a doctor as I was sure this was what it must be. It never happened again. So far, knock on wood! My neighbor gets it periodically and recently was injured falling so be careful!
 
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Narrowminded

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Lenore - he needs to go to a PT specializing in Vestibular therapy. My dad had this same thing. DD's boss is actually one and she fixed up my Dad. It's a crystal in the ear that gets out of whack. They do a manipulation to fix it.
 

Lkaibel

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Thank you! Brian has been consumed with the idea it's some freaky unfixable ALS thing. I am SO glad to hear all of this! Yes a "Balance Specialist is on his list of people to see.

Falls, yes watching for those!
 

Nikki J

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I think he is still pretty mobile with torso strength? Try the home exercises while waiting to be seen. There are several Epley is commonly recommended. There is the half somersault which sounds alarming but it is actually easier. The purpose is to move those crystals and if you are lucky it will work in a few days.
 

gooseberry

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Steve had this a year before diagnosis. His ent scoped him, can std tests, etc. I was a little mad about the std testing. He also had a lot of tinnitus. After 4 months and a lot of vomiting, it went away.
 

Lkaibel

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Yup, he is and thanks!
 

Lkaibel

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No vomiting at present, so glad for that. Interesting a few people here had prior to Dx.
 

KimT

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It sounds like benign positional vertigo and it is very common. I'm hoping that is what it is because that is when small calcium pieces become dislodged in the ear canal and float around, causing extreme vertigo. You can correct it yourself but it can become scary.

I had a bad car accident and after I was dizzy 24/7. I dislocated my TMJ and had whiplash. The dizziness got so bad I went to the Pittsburgh Balance Center at the University and went through two days testing. They said mine was a combination of atypical Meniere's Disease, cervicogenic vertigo, and TMJ disorder. It does get worse when I overuse my neck or chew things. I was so hoping mine was benign positional vertigo but it wasn't. I've had 5 friends with benign positional and that is way more common than anything else.

I have an Rx for Antivert and that, along with Valium helps me. Some days I wake up and can only position myself on my back. Turning on either side sets off the vertigo. The tests they put me through to diagnose it were brutal and I was well.

If you pull up You Tube you can see the Epley maneuver. Any ENT will try this before anything else.

I'm so sorry, Lenore. Like he needs something else.
 

gooseberry

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Steve was fine one day and then he couldnt stand or sit without vomiting. He could only stay flat-on-his back.

I think this is just one of the screwed up metabolic changes that happen.
 

Lkaibel

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It may be in some big way poorly understood, these syndromes are related to ALS, but then again there is the part about how it's not ALL ALS after diagnosis.

For example, in the winter I thought Brian's voice was weakening. Ahh, going bulbar I thought. Nope, it really was his 50 year long sinus issues. He got some mucus thinners and allergy mess and boom, all better and no issues since. ALS clinic knew it as soon as we came in for our regular clinic. Not how bulbar speech sounds, they said.

I understand positional vertigo and other vertigo syndromes are much much re common after age 55 or so per what I heard today. So along with ALS, Brian is getting 67 year old type issues.
 

affected

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A friend CALS locally had this and we had to really rally around her to take over with her PALS for the week or so it took for her to really be safe again - it was the exercises done with her by a doctor that fixed the crystal issue.

It's something reasonably common for people to encounter so I think we would just find a similar proportion of PALS will suffer from it at some point?
 

KimT

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My theory is that PALS experience different kinds of dizziness and vertigo because of loss of muscle throwing off posture. I know when I stopped working on the computer 10 hours a day my neck pain vanished and I had way fewer episodes of vertigo. I still had 24/7 mild dizziness that worsened when I overused my jaw or neck but it wasn't any different than it had been in 2000, the year of my auto accident.

Some people with BPPV have to stop doing certain activities that trigger more vertigo attacks. I friend at work, only 40, had to stop competitive swimming because the repetitive turn motion tended to dislodge the crystals. My sister-in-law had to stop yoga (she is 75) last year because some of the poses caused attacks.
 

Lkaibel

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ALS is such an unknown at this point, the answer could be any of these, but it seems that the Crystals are common in people without ALS too. My husband has had neck issues for many years too, so that never helps.
 

affected

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How is the vertigo for him now Lenore? Do they seem to be solving it?

My Chris never had any kind of vertigo or dizziness.
 
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