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:
- 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)
- 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