Vestibular Rehab

Imback - are you saying that your doctor has not yet agreed to order a CT scan or MRI for you? If so, I would find a new doctor. I was adamant about getting one about 6 months in just to ensure that there was not any other cause. I would have been so mad at myself if I suffered for too long only to find out that it was a tumor or something fixable.

When everything else was ruled out for me through CT (I can't have a MRI due to a brain shunt) and vestibular/ENG testing, my doctor recommended the vestibular rehab. I did not go however primarily because my issue was not daily balance/slight vertigo issues but random attacks of severe room spinning. In those instances I honestly don't believe that any rehab can help deal with it - but that is my personal opinion on not based on any true knowledge!

If you have not already tried it, when I had a month long stretch about a year ago of daily "dizzy" (not full vertigo), and slight room shifting I finally tried Meclizine. It worked immediately to help. I had it in my cupboard already as the dr had initially recommended but for my full room spins it didn't work for me. BUT during that month period it was amazing. (And it is available over the counter and at low cost.)

 

I did some vestibular rehab on my own. I don't particularly think it's something you need that much help with. It does work to more quickly help the brain adjust to the changing balance information coming from your ears. The problem is that if you are continuing to get vertigo attacks, more balance is being lost with every one, then what good are the exercises? Before my attacks became more frequent, I did use it and had a WONDERFUL week back in October where I felt almost normal and like my old self again. I would say the vestibular rehab exercises were a big part of that.

Once I get the vertigo under control, I'll use them like crazy so that I can become my normal self again as quickly as possible. Until then, I don't see much point in them. But that's just an uneducated sufferer's point of view.

The exercises are really quite simple. 6 separate exercises.

1. With eyes open and moving WITH your head, shake your head no 10 times.
2. With eyes open and moving WITH your head, shake your head yes 10 times.
3. With eyes closed, shake your head no 10 times.
4. With eyes closed, shake your head yes 10 times.
5. With eyes focused on a fixed point about 2 feet in front of your face, shake your head no 10 times.
6. With eyes focused on a fixed point about 2 feet in front of your face, shake your head yes 10 times.

For the fixed point, I put my arm out full length in front of me and extend my index finger and stair at it.

For the initial ones. Do them seated, and if you start to feel nauseated, best to stop and do it again later, trying to slowly work your way up to full completion. Once you can complete the whole thing seated without nausea, try doing them standing. You can also slowly increase frequency by doing them multiple times a day.

Those were the vestibular exercises I learned from 1 source. Others might know of other exercises. They do work. I just can't stand anything right now that makes me more nauseated than I already am on a regular basis.

 

I just started this in February. I go twice a week.

For some background, I have had mm for 10 years. I had a three year remission that ended last summer. Had a really bad few months, and in January had some tests done that showed I have lost all usable hearing and balance in the bad ear after this last round. Hence the vrt.

I thought my balance was pretty good -- until they had me do some exercises with my eyes closed I realize how bad off I was. I didn't get any worse, but actually felt I was improving and my balance getting better as well. About 2 weeks ago I started having very short dizzy spells and they were able to diagnose me with bppv and do the epiley which helped, so added bonus. from my perspective I recommend, didn't hurt and can only help...

 

I should also add - the exercises above are the basics but there are more that can be done, picking things off the floor, sit down stand up, lots of turning with your eye opened and closed. They tailor it to whatever makes you dizzy or feel off. The theory I think is they try to recreate the dizziness in a small dose -- which then trains your brain how to respond, so eventually when the situations happen in real life your brain is better able to interpret and you don't get dizzy.

 

Great points Alynn. I hadn't thought about it in this context, but I've also find that working out with lots of body weight exercises, things that require you to move your body through space, to be very helpful. Squats, pushups, situps, pullups (even if assisted), back extensions, burpees, turkish getups, jumping jacks, jump rope, box jumps. Any exercise where the focus is to move you, not just to move weight. So a lat pull down or a bench press, for example, wouldn't do much in this regard, because your head isn't going anywhere. And as an added bonus, you'd get into great shape.

 

I'm pretty skeptical of vest. rehab. for people with Meniere's. From what I've read, so are most Meniere's specialists. The key to vestibular rehab is to have a stable starting point. Those with ongoing Meniere's symptoms find their vestibular function in a constant state of flux and the brain struggles to find a "normal" baseline.

When I first had Meniere's, my ENT sent me to vest. rehab. The rehabilitation specialist wondered why I was there, given my diagnoses. He didn't think he could do much for me....and he was right. It did nothing.

But.....give it go. We're all different and maybe you might see some benefit. I found the exercises easy to tolerate - really no big deal.

Later, I did go through some additional rehab after my labyrinthectomy. Not sure if it helped or not. I think I got more out of being active, walking, and pushing myself with daily activities.

 

Hi imback,

I had a little success with VRT a couple of years ago but for me it was only temporary. I went twice a week (2 hour sessions each time) for several months and also had exercises the therapist gave me to do at home on the days I didn't have therapy. I have to say that it was a little rough for me as I was still having vertigo attacks fairly often so I was usually pretty wiped out and nauseous after a session. It didn't cause me to have more frequent attacks but it also didn't help me have fewer attacks either. It mostly just helped a little bit with my balance but again it was only a temporary fix for me.

I think each person handles it differently depending on what stage of MM they're facing at the time so what may not help one person may be of great help to another.

Sending good wishes that VRT will be very helpful if you decide to give it a go.

All my best to you,
Lulu

 

That was kind of my experience as well. I do find that staying as active as possible and working out as I described above, helps to keep the off balance feeling we all have after an attack at bay. If I don't start working out as soon as possible after an attack, I am more off balance for longer. But yeah, as long as more of the balance organ is dying on a regular basis via vertigo attacks, you are trying to adapt to a constantly changing, unstable system. And that's not going to work too well.

 

I'm 15 years in since being diagnosed, started out in right ear, now bilateral. I had Endo. Sac. decompression and shunt surgery about a year after my first attack and diagnosis, tried more kinds of steroid injections and meds than I care to remember. I've been fortunate to have had the care of some great and well respected Neuro-Otologist and also suffered a few jerks along the way. Been tested at Duke's lab a couple of times and have gotten second opinions from their Chief Doctors for good measure. I am pleased now to have an ENT from CA that makes the rounds to a satellite facility of a practice that has several offices (I live in a rural area near the coast - NC/SC state line). He is well balanced and understands all I've been through, I had done vestibular exercises in the past but never "real Rehab". He was the first Doc to suggest it because we felt it was really the best and only option for me at this point.

There is a Rehab facility that he knew about and had sent patients to before with good reports that is about 45 minutes from my house. They had two Therapist trained to work with people who have vestibular problems, I have done two stints over the past couple of years with the same one who came from Walter Reed. She is a 100 lb. Pit bull with a heart of gold and a witty sense of humor. "If you can't laugh at yourself, right?' I truly believe it takes a special type of person to be effectiveat this job.

I went once a week for at least an hour each appt., that is really about all I can take. She kicked my rear end! Some days I was toast upon arrival, maybe the weather (T'storm brewing for instance) or I was just having an off day or didn't sleep the night before - gotta love 24/7 Tinnitus when it's ringing like a Fire Alarm. So we would change things up to what I could do, that was what helped make it work overall really anyway. She tailored a program to me specifically, even down to what I liked and used to do - Basketball for instance. I often had to sit and calm things down, even take Diazepam before the drive home. I think it helped me in a number of ways, I feel somewhat more agile and my mindset has improved. She got me moving and out of my comfort zone, doing things (at least to some degree) that I'd not done in years. It made me realize I need to take advantage of those infrequent moments when I can do something, don't waste them.