Anyone hear of this treatment?

I just talked to a friend of mine who has been taking a friend of hers to somebody in Chicago to treat her dizziness and tinnitus. I’m not sure what diagnosis she ended up with but the treatment is based on what they do when someone in the airforce, after doing all the maneuvers they do, comes up with vertigo. It has to do with looking at dots.

This woman’s symptoms started with an ear infection. She is completely back to normal after this treatment.

Does this sound familiar to any of you?

Julie

Hi Julie, no…never heard of that treatment but sounds interesting. Haven’t seen so many posts by you lately Julie and was hoping that it’s because you’ve been improving in your treatment, is that so? What treatment are you on currently and is there anything, in particular that you find beneficial?
kind regards, Judy

Hi Judy,

Thanks for asking.

i know, I’ve been a bit absent. Someone very dear to me died. He was one of the most dependable people I’ve ever known and I could never have grown my business without him. It’s not often that I come upon someone you can always count on and he was so great. So I’ve been busy grieving, as well as restructuring my business to run without him. I’ve checked the board daily, but haven’t felt up to participating. I guess i’ve been depressed. The good thing about that is that I was afraid, as others have complained of, that Zoloft would rob me of my lows. Well, it has not. I feel appropriately depressed.

I’m going to talk to my neuro-oto early next week. I wonder if it’s time to stop pushing up on Neurontin. My doc’s feeling is that if it helped at the lower doses, i may have just hit a plateau and need to keep going up. But I haven’t had any real improvement with it since about 1500. I’m at 2300 now.

I got a certain amount of relief with Zoloft and some more with Neurontin and I would like to stay on them. I am active around the house, but am still too motion intolerant to go out. It may be time to add Topomax, which I’m not as afraid of it since having such an easy time with Neurontin.

I guess that’s something else adding to my mood, i’m confused about what to do next. I’m trying to give my doc the most correct information I can, but when you are constantly assessing the degree of your symptoms, it gets hard. I have to look back to where I was a year ago, or even a few months ago to see what dramatic improvement I’ve had. And then I have to ask myself why. I think it was a mistake to be doing so many things at once, but I was desparate for relief. After being practically bedridden for so long, my body was dwindling away, and my marriage was suffering.

So, has the improvement been due to the increase in the Zoloft (I’m at 75 mg now !!), or the Neurontin, or the Klonopin that I have started at a very low dose.

How have you been?

Julie

Julie,
I found a reference to maneuvers developed by an air force surgeon–I think it was on Dr. Hain’s site. I actually talked to the surgeon, and he expressed some concerns about me trying his system, but sent me the DVD. And, I’ve been afraid to even play it. I’ll check it out, and report back to you.
Kira
I’m so sorry about your loss.

Kira,

So you actually talked to Dr. Puma? (I found the DVD on Hain’s site). Why did he think this would be wrong for you?

I may give them a call on Monday.

thanks for your kind words,

Julie

P.S.

Kira,

don’t watch that tape if you think it may make you worse, especially since you’ve been advised against it.

I got an email from Puma and he talked more about the treatment, based on habituation. I also watched the video of a recent spot on dizziness, including an interview with Hain and a PT. I’ll have to watch it again, but I think Hain was saying that PT was hardly his first course of action. Could be very beneficial was all he was willing to say.

Anyway, i’ll look into it again, order the DVD if i think i’m interested enough, but again, please follow your gut feeling and please don’t watch it on my account - you’ve been through enough MAV hell.

Julie

Julie,
Sorry I didn’t reply earlier, I missed your posts. I emailed Puma, and he actually called me. He discussed my case, and because I had exacerbated things with my own attempts at rehab, he was very cautious about me trying his exercises. He did mail me a DVD to review, and I was so scared of it, that I left it unopened.
But, lately I’ve been having more symptoms. I had a rotten day at work yesterday: dizzy, unsteady–by the end of the day I realized it was a migraine, because I finally had some headache, but I could barely stand up. I work in a windowless, airless room and can only tolerate it for a couple of days/week. My sense of smell is bad due to some sinus issues, and I finally realized that there was a foul smell from an garbage can in one of the rooms.
But, the day and having to work through miserable symptoms, really shook me up.
I’m due to see my otologist in a few weeks.
Personally, I think the peri-menopause is to blame, but it’s hard to get symptoms when you think you’ve put them behind you.
I work in medicine, and I had to see patients while this was going on…
I think I’ll at least play the DVD. I won’t do anything that makes me feel worse.
As I wrote my otologist, it’s not the week to stop the klonopin.
Kira

Julie,
I found the DVD and was going to watch it, then I looked at Hain’s site and found this:
We have tried the “Puma” protocol exercises in a few (about 5) patients with MDD. None of them were able to perform the exercises, because it made their symptoms so much worse. Nevertheless, we are sympathetic to the general idea that things that make you feel worse (when you are dizzy) usually does result in some improvement (if you can stand it). The Puma protocol exercises are just so extremely stimulating that so far – nobody has been able to tolerate them for more than a session or two.

I do have Hain’s Tai Chi tape (now he sells it as a DVD). I think that’s more reasonable.
Hain also commented that mal de disembarkment may be a variant of migraine–that’s what I’ve thought.
So, if none of his patients could stand the exercises, I think I’ll take a pass. I’m sure that’s what concerned Dr. Puma when we spoke.
Let me know if you ever try them.
Kira

Kira,

I’m sorry you’ve had a rough week and i hope it’s getting better. I get really freaky when things start to feel worse cause I know how bad it can get and I DO NOT want to go there again!

Thanks for looking further into the Puma method. So this friend of mine in Chicago must have been seeing somebody besides Hain. She said it was REALLY hard, but she’s 100% now. i’m going to have to find out where she was going to have it done. I know she was traveling into the city.

I can’t even stand the thought of doing anything that will make me worse. i would just forget about it if I didn’t know somebody personally who has had such great result - she was bedridden.

I’ve seen the Tai Chi tape sold online. Is the point of that to help develop balance? If so, i used to do ballet and Qi Gong - i would just do some of those types of exercises, to the point that I can. My body has become so wasted over the last couple of years.

What a fright this has been. Thanks for your input and let me know if you ever decided to take those dreaded tapes out of their box :slight_smile:

Julie

Julie,
I took the DVD out of the box, but put it on the shelf. I don’t want to make anything any worse.
I am totally freaked by Monday, and very reluctant to go back to work. I emailed my otologist for suggestions: ? try some motrin/tylenol, but he didn’t think that would work. It does work for my daughter whose migraines are primarily vertigo: as soon as she gets “gross” she pushes motrin and fluids, and it helps considerably. So, I’m not going up on the klonopin dose, and I’ll see him in a couple of weeks and see if he has any other suggestions, but I’m reluctant to try other meds–I didn’t give the zoloft a real try, but I hated the few days I took it.
These set backs are so discouraging.
I play tennis a couple of times a week, and that’s my vestibular rehab–it helps a lot.
It would be interesting to know what your friend did for rehab. I’d accept a bit of suffering, it would lead to lasting results.
Kira

Kira,

I hate that you’ve had a set back. and you do sound like you’re having a hard time trying to figure out what to do. i was just reading the downloadable PDF Headache 2008 that you posted elsewhere and i noticed, again, NSAIDs being listed among preventatives. Then i read here that your daughter knows to push Motrin and fluids. Why would NSAIDs help her dizziness - do they really work in a preventative way?

The woman who did the Puma work was a friend of a friend. All my friend kept telling me was that it was really hard, a lot of work, and had to do with looking at a lot of dots. She was going to get me some specific information about it and get back to me. If i don’t hear from her soon i’ll leave her a message. I know she was in really bad shape, bedridden, had to be driven to Chicago to do this (didn’t do it by DVD), but she’s great now. Yea, I’m really interested to hear more about what she actually did. i’m willing to look at dots.

Maybe i ought to get that Puma DVD, and titrate up, like you’re doing. I’ll take it out of the box and put it on a shelf. After a week, to allow my system to stabilize, i’ll put it in the DVD player. If that goes okay, i’ll titrate up and have my husband watch it, etc, etc :slight_smile:

Your daughter sure sounds spunky. Would she watch it for us?!

I hope you don’t mind my teasing - it’s a dire situation and i don’t mean to make fun. It’s just that this entire thing is so crazy. It feels especially bad when you know you’re at your limit of benzo. I liked it better when I knew that if things got really bad, I could add a little.

And please, do not watch that DVD if you think it will make you worse. I sure am glad that you didn’t watch it just before having this relapse.

Regarding the Zoloft. It helped me, but it didn’t cure me. If i had to do it over again, from what I hear, from Hain and others, I would have asked for a low dose of Effexor.

You take care and don’t stress about that DVD.

Julie

P.S. I’m glad your daughter got home safe and sound. you don’t suppose you got a post-stress migraine?

Julie,
I can see the PUMA on the shelf, I might just put it in the player one of these days…
My daughter uses motrin as a migraine abortive. When she saw the otologist, he asked if imitrex stopped her dizziness and when she said it did, he said that confirmed MAV.
I contacted him today and asked if I should take some motrin/tylenol when I get dizzy and it seems to be part of a migraine–it seems like a no-brainer–but he couldn’t see how it worked. Then we got a bit testy about the klonopin–he chided me for always wanting to get off of it. Hmmm. Seems to me that he brought that up first, then over then next couple of years I could only cut down a bit. I literally asked him what I could do for a bad day, and he said nothing. I think there must be something–even if it’s gingerale.
My ENT has taken over the klonopin prescription, and when I saw him, he said that when I flare, I might need to increase the dose. I just don’t want to.
I will take a migraine abortive, like motrin, if things get rough again. I tried to talk to work about the situation, and they are so desperate for the help, that they can’t hear me when I say that windowless rooms with bright fluorescent light and no ventilation aren’t working for me. I think I’ll have to be a broken record.
Flare ups are just so discouraging.
I do like my otologist, but he’s not into day to day management, and I live with this every day.
Kira