Dr J Staab on MAV

Specific Illnesses & Conditions VM/MAV
1

Hi All

I had my neurotology appt with my physician of many years Dr Davies at UCLH. Luckily, Dr Staab from the Mayo clinic is doing some research in London, and he dropped into my session. It was fantastic having 2 physicians review my history, symptoms and drug trials.

All I can say Staab really knows his stuff. He’s actually a psychiatrist, but has focussed his career on chronic dizziness management.

Staab has been very successful, because as a psychiatrist, he has been more willing to experiment with drugs trials for dizziness with a migraine variant. Some neurotologists are not as adventurous. Interestingly, he has found a lot of his patients with migrainous dizziness also suffer IBS and chronic bladder irritations (just like me). He believes symptomatic conditions like these, that have no obvious cause (e.g a cancer) are a mismatch of neurotransmitters in the brain.

His approach is 2 fold:

  1. Get to the highest dose possible of one particular drug, to see if it knocks out migraine and dizziness together (this is dependent on tolerance)
  2. If the patient cannot tolerate, he reduces the dose of that drug (based on improvement) and adds in another agent. 2 pronged attack.

He also said following a strict diet in combination with the drugs tends to alleviate symptoms quicker (especially if you have things like IBS/IC)

For those who have 100% resolution of symptoms and stop meds (like me back in 07), he said its not uncommon for things to fall apart again, retry the regime and it not be effective. The good news is, the MAJORITY of people who come off meds and do just fine.

After 9 years with this junk lingering around, he felt I should have much better control than I do. (for those who don’t know I’ve kind of been hovering at 80% for 4 years now).

This is my game plan to really try to get to 100% recommended by both doctors:

Nori: 1st month 10mg, 2nd month 20mg, 3rd month 40mg. I will be emailing my neuro on progress and then have a review in April.

If this doesn’t work, we reduce the Nori to 10mg and add in 10mg Citolopram and try this for 3 months. I also need to consider if my recent return of bladder symptoms to do not resolve.

If this fails, its a new agent but mixed with some sort of SSRI. One to attack headache/heaviness/ the other to attack dizziness.

If you can see him at the Mayo clinic in the US I would recommend it if you have failed to find a useful or understanding doctor.

Cheers,

Luke

2

I’m glad you had such a good appointment with 2 attentive doctors. I have to agree with your comments on Dr. Staab. I was lucky enough to see him at Mayo last year. I was referred to the Psychology/Psychiatry department there by a GI doctor who couldn’t find the cause of my chronic nausea. After describing my symptoms to the Psychologist, she referred me to Dr. Staab. He did a great job explaining my symptoms to me in language that made sense, validated my numerous symptoms (e.g., visual patterns making me sick, constant nausea and motion sickness), and gave me hope that I could eventually find a successful treatment.

Another treatment option that he recommended to me and that has been quite helpful is habituation therapy on the computer. At one point I could barely look at the computer without getting extremely motion sick and dizzy. He had me start at 10 minutes a day, every day until I could comfortably work on the computer for those 10 minutes. Once I got to the point of being able to work for 10 minutes without aggravating the symptoms I continued that for 2 or 3 weeks, then moved up 20 minutes and started the pattern again. I’m now working on the computer without too much trouble (assuming there are no annoying flashing or moving items on the screen).

I hope your treatment plan is successful!
Sarah

3

why did they say to go up on the med so slowly? if u are tolerating it then maybe go up faster bc it could take u months to get to a therapeutic dose???

4

SarahHL - great to hear you had a positive experience with him as well. I was impressed. I don’t really have an issues with computers, except the screen is shaking because my gaze is off. I try to ignore it. Thanks for the advice though

SarahHD - I’ve had this for 9 years, and time is on my side. I would prefer to do it as prescribed by an experienced physician, and take things slowly.

5

Luke,

This is a really informative and interesting post. Really appreciate this one. I always wrote Staab off as a chronic subjective dizzy guy who failed to understand migraine in all of this but not at all correct by your experience.

The approach they agree on sounds rock solid to me and totally logical and one I had not thought of really – not quite like this. Unreal that your bladder issue is back on the burner eh? Certainly appears to be migraine related.

Look forward to hearing about your progress.

Cheers
S 8)

6

Scott,

No problem. My diagnosis has always been chronic subjective dizziness and migraine. I’ve never had it called MAV. I guess the terminology is less important than the actual program to get you better. It was just so refreshing to hear a guy nail my questions spot on.

Yeah really bad the bladder problem is back because dealing with 2 issues at once is tough in terms of staying positive. One day I will get there my friend. As usual it’s a waiting game.

Luke