Topic: Does Vestibular Rehab Therapy Supposed to be so Brutal?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I started vestibular rehabilitation therapy last week. I'm into my third session. I have to say I'm really demoralized.
I feel HORRENDOUS. Can barely walk straight. MASSIVE head pressure and balance issues. Neck very stiff. Ears pounding.
The therapy facility is nice and says they are starting very slow. No crazy exercises, but I'm doing 7-8 different ones. This is the first time I ever tried this type of therapy. I have no known/documented ear diseases. I've had ENG testing 3-4x..all normal. No Meniere's.
No doc has ever ordered MRI of my ears. Not sure if that's important/meaningful if other tests are normal. Everytime I do the exercises, I turn ice cold.
I had to drive home about 1/2 mile today. I couldn't even look to my left to get in the left lane. Had to turn right, then right to accomplish it.
What the hell is wrong with me? How can I be so so messed up when the ear tests show nothing. A world specialist neuropthamologist at Cleveland Clinic suspected I have an inner ear disorder due to a viral attack years ago. Who knows. Easy to say as it's impossible to prove/disprove.
I showed my PT person a copy of Dr B's therapy recommendations. He read them. He printed off a copy of an article about Lyme from the National Institute of Health (NIH) website and asked me if I really think I have Lyme. I should bring in my THOUSANDS of pages of literature I've read and have him read it if he's so sure. Geez..
I've learned one thing. Without having your ears working, you're completely screwed. No hope of a normal life. It's probably better to be missing a hand.
I'm afraid continued vestibular rehab therapy may make me worse yet. I can't take worse unless there's a payoff at the end. Anyone go through this directly and come out better at the end?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I could not do it, for the most part.
I did not have a vestibular therapist who knew WHY my symptoms were so much worse than those she's seen through her entire career.
I had told her about the kind of sudden falls that would occur, they'd happen during testing so it was in my record. Yet, the first time I had a sort of faint / sudden "sit-down" I recall looking up at her still in my quiet shock, hoping she could say,
"Oh, yes . . . this is what is going on and here is how we can fix that."
Instead, she said: "well, why did you do that? What's going on there?"
I looked at her like, "well, YOU tell ME!" At that moment, I could tell my body was just alien to her. She had no clue.
Now, seek, Qi Gong worked a million times better for me than a formal vestibular therapy.
Yes, there are some specific exercises that can be done on our own, some "Yoga for the Eyes" exercises but something like Qi Gong was so much better for me.
===============================
Rather than an MRI of your ears, a very specific CT scan would be best to evaluate what is called
Superior Canal Dehisence
At this site, directions for exactly how to order the CT scan. Best done by those who really know about SCD, most ENTs really do not. Many neurotologists do not know either, partly because the research is relatively recent.
I saw a report on ABC news a few years ago, got the scan and it does appear that I have this - but am not a candidate for surgery (for many reasons). SCD can be caused by lyme but, of course, most ear doctors know so little about lyme . . . .
For me, SCD still does not explain everything so it's still a multi-functional deal. However, if this is present, some have had their lives back with surgery.
[ 01-04-2012, 04:51 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- VISION
I hope you were able to see the replay of the ILADS conference (the replay was a Saturday a week or so before Christmas.
The first video of that replay (and not on the original play date) . . .was Padula's vision presentation with a lyme patient.
It was amazing. Just amazing. It gave me hope.
This patient with lyme tried to walk down the hall and I saw myself. Then he put on the glasses and, like magic, he could walk.
Dr. Padula is NOT a LLMD but he knows about lyme and explained how the ears are not the only system that control balance . . . and how lyme can affect that in the brain and with vision (but not necessarily the eyes themselves).
The yoked prism glasses can help train the brain what is right again.
I just tried to find my notes and links on that but, on this new-to-me little PC laptop, I still can't figure out how to organize my file notes like on my past defunct Apple.
I will look for that later and come back and post direct links and the DVD purchase detail.
In the meantime, you might search:
yoked+prism+glasses, William+Padula -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Found my file notes - but can't clean them up now so I'll just post my rough work. I can't even remember what some of the abbreviations are for but I hope this helps.
His use of slides helped my note taking but I can't now figure out some of this. TBD is for tick-borne disease.
================================================
Again, he is NOT a LLMD, however his presentation at the ILADS conference will help many lyme patients, no doubt.
CFIDS Journal (Chronic Fatigue & Immune Dysfunction) - Fall 2001
Visual Dysfunction in CFS
By William V. Padula, O.D., FAAO, FNOR
yoked-prism glasses
===============================================
His office may know of lyme-literate doctors in your area. While there are others who may not be lyme literate who work with the yoked-prism glasses, it would be best to find one who gets the whole picture.
I have no idea if any insurances cover this. However, I think Rotary clubs might be an organization that would consider a grant as they often support vision projects.
Medicare does not cover vision matters but if this is seen as a brain matter, maybe. But the doctors who assess are eye doctors, so Medicare may not help at all.
Still, if someone can get out and tolerate being in public spaces, some organizations might help and the eye doctors' office may have some ideas. -
[ 01-04-2012, 05:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
hi there...i tried vetibular therapy for 2 months, and it made me so much sicker. some people benefit tremedously, others not at all. i was one of those, unfortunately. you are not alone in your frustration with this. if its making you much worse i would reconsider doing it. i wish you relief and health as soon as possible. love jess
Posts: 651 | From ct | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ADRENALS and vestibular.
Sorry for so many different posts but this one deserves its own space.
Just one reason I could not continue going for vestibular therapy is that I was just in a state of adrenal shock, of sorts.
The therapy was just far, FAR to much for me.
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In that "tinnitus" thread, you will see a post for
FELDNENKRAIS technique and how one woman with lyme did so much better with a Feldenkrais therapist, regarding vestibular therapy.
I've also had some Feldenkrais and would far prefer that to the run of the mill vestibular P.T. that I got.
There are some excellent P.T.s who are also trained in vestibular matters, however, with some who has lyme & co, even an excellent one may not have the knowledge, experience & skills we need.
Ask at your area support groups for names of other therapists who have worked well for those with lyme.
posted
In my case, vestibular therapy made me feel worse. They came to the conclusion that my symptoms were caused by migraine which was caused by lyme.
My therapist told me that anytime symptoms get worse with the therapy, they suspect migraine as the cause.
The problem is coming from the brain and not the ears. Until the brain calms down, it cannot learn with the therapy and symptoms go crazy.
Supposedly migraine can cause all kinds of balance issues, head pressure, vertigo, dizziness, neck pain, vision problems, motion sickness and problems and of course headaches.
If you want more info. PM me.
Posts: 581 | From CT | Registered: May 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Seekhelp - I wish I had some advice; I can only say that I am in the same boat.
Just recently have acquired numerous ear problems. mainly tinittus and dizziness. I believe its due to the meds so now I can't really take meds.
I am so scared that I will never be the same again. Its so true... if your ears are not working your screwed. I never realized that until now.
I felt like I was floating before... now I feel like I'm on another planet. Please let us know if you find solutions.
Keebler.... will check out Qi Gong. not sure what that is.
Posts: 2232 | From USA | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I believe the ear problems are mainly due to lyme and TBD's. Dizziness / vestibular issues was my worst symptom pre treatment.
I was originally diagnosed with Labyrinthitis (which can be caused by Lyme) and sent on my way by an ENT.
I tried vestibular rehab therapy.
It works great if whatever damaged your vestibular system is gone and no further damage is being done.
But if, for example, lyme and TBI's are to blame then you must eliminate them first, otherwise they are going to continue to attack your vestibular system and you will continue to do poorly in vestibular rehap therapy.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 80% +/- most days. Posts: 3130 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's important to keep in mind the connection between toxins and the inner ear.
The vestibular system (inner & middle ear) is the very first alarm system for toxins in the body.
As long as there is a toxic infection, treated with drugs that have some toxicity of their own and need to be metabolized by our organs of detoxification (liver, kidneys, lungs, skin) . . .
and those organs are overloaded, overwhelmed, stagnant or whatever other terms apply,
then the vestibular system just is going to be overwhelmed, too. then we are in the middle of our own "Tilt-a-Wheel" in so many ways.
Notice how every one of these is also a symptom of lyme or other tick-borne infections - heavy metals - or other toxicity:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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