Just updating you on my visit to Dr Granot in Sydney. After hitting a dead end with Melbourne doctors who didnāt really know where to go with me, I decided to pack my bags and head to Sydney to see Dr Granot (big decision to leave three little ones at home). But was it worth itā¦ absolutely!! It was such a refreshing change to speak to a doctor who was willing to take the time to help. He dedicated an hour to me on my first visit and sent me to have a whole range of MRIās (which came back normal).
He reluctantly agreed the dizziness was related to migraine, however, he still had a big question mark over the fact that I had never been a migraine/headache sufferer before this whole thing started 2.5 years ago. Knowing how sensitive I am to medications he started me on Periactin - 1/4 tablet (1mg) - increased slowly until I reach 12mg. He made clear that these preventatives need to be taken at an adequate dose for an appropriate length of time (at least 6 weeks). So I will have to persist through the horrible side effects until things settle I guessā¦
Well this was the plan until I got a phone call from him the next day to come back into his office. He had chased up some VFT/ balance test results I had done early last year. My ENT had reported these as normal, however according to Dr Granot they were not at all normal and showed left vestibular hypofunction - Menieres ??? I now have to have more VFTās and an EChoG test to confirm Menieres? Really worried now, this is a life long condition with no cure. I had always thought you had episodes of dizziness with Menieres as opposed to constant dizziness 24/7ā¦apparently not?? I am so grateful to have found Dr Granot (thanks to this website). He was definitely worth the trip!!
Hi Kylie
Well, you have good news and (maybe) bad news that Dr Granot thinks Menieres might be the reason for your dizziness. He is so thorough & easy to talk to and hopefully will be able to make a diagnosis. You say that youāve never had migraine but do you know whether there is any history of migraine in your family? Some people on this forum with MAV have never had migraine but maybe had a relative with migraine.
I know about four people who have Menieres and none of them have ever had 24/7 dizziness so am hoping for you thatās not Dr Granotās diagnosis.
I think Dr Granot prescribed Periactin for Victoria recently - wonder how sheās getting on with it?
Fingers crossed for you for a good result. :?
Barb
Good timing on the post as I just saw Dr Granot again this morning. Agree with you Kylie - heās tops. Very thorough, although I didnāt get a lot of time with him today (and he was running late).
Kylie try not to get too concerned about Meniereās. Yes, you could have it but also Dr Granot will be being very thorough and trying to pin this thing down for you. To put things in persepctive Meniereās and migraine are BOTH lifelong conditions and the symptoms can be exactly the same, so whatās in a name? Aturd by any other name would smell as bad. Both can also go into remission on their own and both can be managed with lifestyle modifications and medication. And Meniereās for many people can be quite mild and barely progress. So donāt panic.
Barb,
Dr Granot has told me to up my Periactin to 16mg. Heās also told me stress is a big issue for me (see other thread where I mentioned that during my weekās holiday in Bali I was pretty much symptom-free. So clearly the solution is to stop working and move to Bali on permanent holiday!). I kind of already knew stress was at least partly an issue and have done some ābigā stuff - such as reassessing career ambitions (stuff it, not worth the stress), have been put on permanent restricted duties (donāt have to worry about falling over out in the field) and Iāve got myself off my body corporateās executive committee. But clearly I need to manage day to day stuff as well (currently acting in my managerās role which is really full on - sill here at work at 7pm on a Friday nightā¦). So Iāll start doing the relaxation techniques heās āprescribedā and might even take up meditation again. And more trips to Bali!
Oh thanks Victoriaā¦you put a smile back on my faceā¦I just kept reading on the net NO CURE and freaked out thinking I was going to live in this warped, dizzy world of mine forever!!! More trips to bali for sure! How are you going with Periactin? Have you noticed improvements? I am spinning out today after taking 1/4 tablet last night, but Iām thinking the travel may be contributing to that.
Book that flight!
Hi Vic
Sounds like you have been having an overdose of stress in your life for sometime and thatās not counting the MAV! Some things arenāt worth doing if the effect on your body means you are just ācopingā and not enjoying life. Your Bali trip showed that up pretty clearly so good on you for reassessing your work/lifestyle.
Is Periactin the only med youāre on - what about any benzos? Do you know Grnotās view on these - he sort of āignoredā the issue of my taking Ativan - didnāt advise stopping or switching to something else. Iām thinking of asking him about trying gabapentin with the dothep to get on top of the visual vertigo.
Yes, he is very thorough & glad Kylie made the visit & hopefully get a diagnosis. I agree - the three people i know with Menieres - two work and manage very well - my neice has three chn and she has been in remission for quite a while now.
Barb
Barb, Iām not convinced Iām getting much benefit from Periactin but Dr Granot seems to think I am. I do think heās on to something with the stress so Iām going to put more focus into dealing with that. Iāve certainly experienced times when Iāve been quite symptomatic - go into a stressful situation and can definitely feel the symptoms ramp up. I guess where it gets more tricky is day to day stuff simmering away under the surface. Iām clearly not dealing with the stress yet, as Iām typing this from work! Iāve come in to get on top of things - too crazy during the week with people endlessly asking me stuff, phones ringing, meetings to go to etc.
Iāve discussed Valium with Dr Granot before. He doesnāt think it helps for vertigo but, just quietly, I disagree. Sure, it doesnāt get rid of it but I feel it does calm it down and certainly reduces the anxiety you inevitably get with it.
I think thereās a business opportunity for someone to start MAV retreats in Bali
