Hello Adam

Hi Adam,

I wanted to say Hi and let you know I remembered you from the DN site. I still post regularly there. I found the link to your site from the site Charisse posts at, although I just lurked there ocassionally.

I was really surprised to find out the S.F. area is not current on vestibular research and testing equip. when I was trying to find a new doctor. I was at a point I didn’t have the patience for any more doctors that didn’t understand or have better training in diagnosing vestibular problems. I ended up going to Tom’s clinic on my way back from Europe this summer so I could get evaluated at a clinic that knew what they were doing and had a strong knowledge of the dx criteria for the different disorders affecting the balance system. Even though at this point the doc says it’s poss MAV because they need to see if the meds work to confirm it, I think the dx is correct based on my history, tests and sx. His clinic really did a very thorough balance evaluation and the tests showed the damage to my vestibular system. The other clinic I went to the tests they did do were negative and the others they either didn’t do or didn’t have the testing equip. It was worth the trip to get it figured out and not be told again well your tests are all normal there’s nothing wrong.

Hi Jeanette

Great to see a DizziNews’er on here! That’s great to hear you went to Tom Boisimer’s clinic -
how far was the drive/flight??

Tom and his team sound like a great bunch - and I appreciate his direct manner in providing
information that he has learnt as the director of that clinic. It is very rare to find someone
who is undoubtedly as busy as he is who is willing to spend the time and energy on a public mailing list
helping people out.

I hope the diagnosis sorts out most of the battle you’ve been having! I did read in the other
thread that you are taking Topamax and are having a sort of 50/50 run with it (some good, some bad)?

What improvements have you had, and what side effects do you think it is causing?


Hi Adam

Tom’s clinic is in Ft. Wayne Indiana which is a long ways from California. Since I was flying back from Budapest, Hungary at the time it was just a matter of stopping on the way back. To fly from Oakland, CA or SF it’s about 5 hours of flying time with changing planes 1 time and it adds at least another hour fot the layover.

It is very rare to find someone who is undoubtedly as busy as he is who is willing to spend the time and energy on a public mailing list
helping people out.

That’s what I thought too. Someone that dedicated, knowledgeable and educated about vestibular disorders was worth going to see to finally get some answers. I had gone to several doctors ten years ago and never got any answers and the neurotologist (had just retired) and nuerologist I had just finished seeing still didn’t have any answers and I wouldn’t accept the tests are all negative there’s nothing we can do…we don’t know what’s wrong.

At the same time my 20 yr old daughter was also experiencing severe vertigo attacks with vomiting that got her so dehydrated she was in the emergency room first on the East Coast and then 2 weeks later on the West Coast. At this point she hasn’t had the lasting 24/7 dizziness that I’ve had, but someday she might develop this too. She doesn’t even want to admit it yet that there is even a possibility that she could have MAV, but all the signs are there for her too. She gets severe motion sickness and has for years. I have an aunt and a cousin that have had it too.

Anyway, I asked Tom what were some good thing to look for in a good balance clinic in case she needed to find one too because she was spending the summer on the east coast then going back to college in southern Calif. He said a good balance clinic has a rotary chair among other things. I called the top University clinics in the S.F. area and many smaller ones and they either didn’t know what it was, didn’t have one, or just had the VAT, so I decided I might as well go to Tom’s clinic. I didn’t want the frustration again of getting a doctor that lacked the knowledge to correctly diagnose me and having to go from doctor to doctor until I found one who had the proper education to dx me.

Even if I suspected MAV at that point because Tom and Ann had pointed me in the right direction, it didn’t do me any good if I couldn’t find a doctor who knew how to dx or treat it. I even brought info on it to my FP doc and he got upset with me for trying to dx myself off of the internet. On that day I had already made the appt. at Tom’s clinic and he had requested a full blood work up for my FP doc to do in advance. Then my doc calmed down when I showed him the e-mail request and info about the balance clinic. Now that Tom and Dr. Disher gave me the dx of poss MAV my FP doc is now willing to follow up with the treatment plan with migraine meds. Before when I asked him he wouldn’t even consider trying it cause it was beyond his scope of medical knowledge.

The dizziness and vertigo started after a work related injury and I wanted something more concrete showing I experineced something that can be considered quite subjective. While that was another consideration, it wasn’t primary it was secondary. Having a family history of dizziness made it important to me to get this figured out too. While I know migraine episodes can be re-triggered by mild head injuries or the stress from an injury proving it is an entirely different matter. That is up to my lawyer to figure out at this point. To me it was more important to figure out what was going on with the constant 24/7 dizziness and longer spinning vertigo episodes I was having and hopefully find something to treat it and maybe get some relief or have it go away completely again like it has in the past. This was by far the worst episode of dizziness/vertigo I had had in my life compared to the one ten years ago.

I’ve always tested negative on the ENG and for the first time I had the Computerized Dynamic Posturagraphy (CDP) test in May at the local neurotologist clinic and that was negative too. At Tom’s clinic the CDP came back positive, so I don’t know how that can happen other than I’m sure his staff is definitely highly trained, so that may have something to do with the difference in the results. The rotary chair test showed there was damage to my peripheral vestibular system. The fukada stepping test was positive and I have a significant loss of dynamic visual acuity. Tom’s report says the history and test results are indicative of uncompensated stable peripheral vestibular system lesion and given a headache history, consider migraine related vestibulopathy. The VRT therapist that evaluated me was also able to give me feedback and exercised to help me make improvement. I was kind of hoping they would find some BPPV and could fix it, but they didn’t. Boohoo.
To me the trip was well worth it and Tom’s clinic is very professional and up to date on current research. Right up there with the top clinics.

At this point the biggest improvement is less nausea finally. By the end of Jan I had nausea most of the day and would wake up with it in the middle of the night too. By May it began to gradually lessen just a little to about 6 hours a day and in June 4 hours and I still had it sometimes if I woke up in the middle of the night and anytime I drove or rode in a car, train or bus. The last few weeks I think it’s been about 1 - 2 hours a day on avg. and most of the time I’ve been okay when I drive. I still get nauseas after a shower though. Last week I had 2 days of moderate PMS headaches and they went away. For many months they have usually lasted 8 - 12 days from mild to moderate during that time. I still have a week of that time to go, so I’ll see what happens. I am still dizzy and don’t have too much improvement yet except the driving motion sensitivity.

I think it’s a great idea to start a site just for MAV.

Thanks Adam.