Hi Hbep

Hope things are better for you these days.

I just wanted to thank you for putting me in the right direction of a decent doctor- Dr Davies.

She diagnosed me with vestibular decompensation and belives MAV may be a factor in my lack of full recovery.

However since putting me on Pitozifen I have seen great improvements- I still feel dizzy to a degree- bit its bearable.

To bo honest, Im not sure if I have MAV and its just coincidence that I have improved with the meds.

I dont have sensitivity to light or sound either.

Begiining to think that I may have stubborn case of VN or something else. I just dont seem to able to fully kick this thing.

Have you had the same experience? Feeling better but not fully recovered?

Hi there,

Sorry I haven't replied sooner - been out and about a lot on the long weekend.

I was really happy to read your update post recently. As you probably know my diagnosis was similiar to yours - I may have started with VN but now my problem is migraine. If I'm honest - as you were ill for a while and then showed an improvement fairly rapidly after the pizotifen I'm willing to bet a lot that it was the drug that helped you. Migraine is a sort of retrospective diagnosis - if a person shows an improvement on the drug then the chances are it's migraine.

I have a friend who had MAV off the board who also improved vastly on pizotifen. She is mostly 100% well but would get minor blips. She stayed on the drug for 2 yrs then came off it and is still fine. I improved hugely after taking propranonol. We have both had the same thought as you - was it really the drugs or did it happen anyway, but it seems a bit of a big coincidence that that makes three of us I know of all asking the same question who all improved with drugs.

One thing I am curious about is if you have improved but still get symptoms have you talked to the doctor about upping your drug dose. That tends to be the way to go if people show improvements but would like to see if they can improve more. The problem with the preventative drugs for migraine is that they aren't a cure all - people can still get breakthrough symptoms. I was really well - often 100% on the propranonol for a year, but would still get breakthrough attacks particularly with certain triggers - stress, lack of sleep etc... The good news is that migraine works in cycles - it can hit you for a period of time but then just lift and leave. This won't necessarily be your weakness forever.

I guess it's also possible that you had migraine, the pizotifen has taken care of that and now you are still compensating for an original vestibular injury. In which case the migraine probably held your compensation up and it may still take a while to hit the 100% mark all the time. I sometimes wonder about this with me - which bits are migraine and which might be VN.

I know you mentioned no sound or light sensitivity - to be honest I got this illness 4 and half years ago but only developed the light sensitivity 3 yrs in to the whole ordeal. So you can definitely have migraine without it. A few people on the boards over the years have had MAV and never had that. It's just one migraine symptoms along with many.

Unfortunately I am having a pretty bad time of it at the moment. I had a hugely stressful event about 7 weeks ago which triggered a big attack. Prior to this, as I said, like you I was doing pretty well for over a year. I have had a few days here and there recently of feeling much better, but unfortunately seem to be getting either cold or bad hayfever so things got much worse yesterday and now this morning.

Something that may interest you is I saw two neurologists who both mentioned the same thing for migraine - a supplement called co enzyme Q10. I was told to take 300mg a day. They have done studies which show it is as effective as the preventative drugs in limitiing migraine attacks. I am about to start it alongside my drug. If you don't fancy upping your drug dose it is definitely worth trying - I have been told to try that as I have problems tolerating a much higher dose of my drug. You never know, the combo of the two might kick this thing once and for all for you. Of course do check there isn't any problem taking it alongside pizotifen.

Lastly, you are still under two years with this whole thing - in dizzy terms that isn't very long. If you have shown this much improvement thus far there is every chance you will continue to improve with time and get rid of all residual symptoms.

all the best,

Hi Hbep

Thanks very much for the long reply.

I found it really useful.

I have just been skiing for a week and feel better for it- didnt notice much dizziness- just a bit of visual shimmering when i actively focus on stuff!

I am definetly going to look into Q10- do you know where i can get it from?

Ta

Something that may interest you is I saw two neurologists who both mentioned the same thing for migraine - a supplement called co enzyme Q10. I was told to take 300mg a day. They have done studies which show it is as effective as the preventative drugs in limitiing migraine attacks. I am about to start it alongside my drug. If you don't fancy upping your drug dose it is definitely worth trying

Hi there,

Just wanted to chime in here. My neurologist suggested this as well, but I had stomach issues when I took it last year for about 6 months. I saw my holistic GP the other day and told him about the co-Q10. He said stomach irritation is common, but that they now have the Co-Q10 in a chew tablet versus a pill you swallow. He said you absorb more of the Co-Q10 into your system as most of it is lost when the stomach acids asborb it. He said also there has been less stomach irritation with the chews. It gets into your system faster too through your mouth. Just thought I'd suggest this if you haven't already bought yours.

Hbep, I'm sorry you are not feeling so good still. Hopefully, it is only a cold and will subside over the next week. Feel better.....Gloria

PS - Still seeing improvement in the headpain and dizziness. If I could get rid of the buzzing feeling and noise, I'd be doing kartwheels. Little pressure/slight headache today, but I contribute it to eye strain during my eye exam this morning because it started during it.

Best,
Gloria