After reading Scottās report of his appt with Dr Granot in Sydney I decided to risk the possible effects of a plane trip & get to see a specialist who understood the migraine & vertigo condition. FF points covered the air fare & we stayed in the Meriton Apartments at Bondi Junction just a few minutes walk to Dr Granotās rooms at Harley Place. Weather was overcast & drizzly so good thing we werenāt there for sightseeing - missed the sand sculptures at Bondi but managed to fit in a nice lunch at Darling Harbour & coffee (decaff naturally) & cake at the Lindt Cafe by the flamingo water feature!
I have to say that after all the different specialists Iāve seen over the past year (incl. one ENT who told I was phobic about the whole thing), it was amazing to talk to a doctor who obviously has a lot of experience in treating patients with MAV.
I had two appointments with Dr Granot. The first took over an hour & dealt with the migraine & vertigo. His thoroughness & understanding of my long list of symptoms was very reassuring and I found him to be very approachable - not ārushingā me through the appointment and more than willing to answer my many questions.
My second appointment (also an hour) was to find a cause for my peripheral neuropathy which also involved a NCS & EMG & a range of blood & glucose tests (waiting a report on this). This second appointment gave me a chance to ask further questions on the migraine/vertigo issue.
Granotās diagnosis was āmigrainous vertigoā & said the sense of ālosing my position in the worldā (not quite knowing which way is up, which I call visual vertigo) eg when a passenger in car/train/ bus, watching TV with āpanningā sequences, supermarkets/shops with bright lights & when looking down or moving my head quickly, was a āTumarkin Spellā. I know this is a symptom of Menieres but thought that meant falling to the ground. However, reading up on this syndrome it seems to fit with my loss of balance and doesnāt necessarily involve ending up on the floor! Has anyone else had this diagnosis?
Dr Granot has sent my GP a management plan & option to consult further if needed. His advice was to stay on the Prothiaden (Dothiep - his choice of drug anyway) and up the dose gradually from 50mg to 75mg (his normal starting dose) and then slowly up to a max 150mg if needed. As 25mg is the smallest dose available, he gave me a script for my compounding chemist to make 10mg capsules which is a lot easier than trying to weigh the powder! (Dothep, the generic has sulphur in it which Iām allergic to!). Iām now up to 70mg and am increasing veryā¦ slowly as I often react badly to drugs. My headaches & balance have improved already!! Iām already taking meds for HBP (Ibersartan), hypothyroidism (thyroxine) & psoriasis (methotrexate). Dr Granotās advice was less medication the better ā hmmm!! Wish I didnāt need to take any but suppose should be grateful for anything that helps.
He also suggested Periactin would be suitable to help the balance problem if the Prothiaden wasnāt sorting that out as well as the headaches. I was previously told by a neurologist that the max Prothiaden I could take would be 75mg and also that migraine preventatives donāt help balance problems! This is obviously not what Dr Granot told me so it seems imperative to find a specialist who is knowledgeable about MAV.
As to the āfullnessā in my right ear he said he had no good answer to that. However, I take it an indication that Iām under stress & need to take a break & relax, do some meditation, etc.
We didnāt discuss the diet approach as Iād told him Iām sticking to the migraine diet pretty strictly at the moment. When Iām migraine free for a few months (always hopeful) Iām looking forward to a tiny taste of dark chocolate (my fav).
Maxalt was suggested for aborting a really bad migraine (less chance of rebound) but havenāt had to use this yet. Since taking Naramig & getting rebound headaches Iād rather put up with the pain!!
PS Had contacted Dr Waterston in Melbourne to see if he would liaise with my GP without my visiting him but said he would need to see me first so I opted for Dr Granot based on Scottās good consult report & a short wait for an appointment.
The whole trip was incredibly worthwhile & I felt like Iād found the centre of the maze, with a kind, understanding & knowledgeable guy there to show me the way to get back to my ānormalā life that Iād lost over a year ago!
Thanks for your write-up and so glad you had a good experience seeing Dr Granot. He is very good and reassuring and knows what heās talking about when it comes to MAV. No guessing games with him.
Sorry it rained though. Itās been the coldest December in 50 years in Sydney.
Anyway, bottoms up! Sounds like youāre well on the way to getting this mess fixed up and will await to see your entry into the success stories thread.
To be honest, it sounds like he and Halmagyi are on the same page vis treatments, but your āpatient experienceā with Granot sounds a lot better given the amount of time he was able to give you to explain exactly whatās going on. Iām not criticising Halmgayi for that - heās in the public system and the waiting room at the hearing and balance clinic is ALWAYS packed. Heās also involved in tons of research projects. Busy man! On the upside heās always made time to squeeze me in when things have been acute for me when I know the normal waiting list is several weeks or even months.
I too have recently had problems with my ears (thatās why I went back to Halmagyi). He was thinking Meniereās but the tests indicate itās not. Still migraine. He and the audiologist and neurotolgy nurse all said thatās āquite commonā for their wacky migraine patients (like us).
If things head south for me again I might go and see Granot - get some more information and a second opinion never hurts.
Good luck with your treatment protocol Barb and keep us posted!
Oh, and sorry about the weather in Sydney - it really is woeful at the moment. Iām dragging out the doona again!
Thanks for the replies Scott & Victoria
I probably need to point out that Granotās fees are pretty high (well maybe not for a specialist of his callibre! However, Iāve seen so many specialists this year that pretty much all of his fees were covered by the medicare safety net. That said, I would happily have paid his full fee for the service I got! And yes, he was aware of this forum but donāt know whether heās ever checked it out.
Sorry to hear about your relapse, Victoria, esp. after posting a success story - hope you get on top of things quickly.
Regards
Barb
Another thing about Granot is that he will reply to emails very quickly and follows up when he hasnāt heard from you. I canāt imagine thereās many doctors out there that will do that.
Hi guys, thanks for all your posts but especially Barb. I made an appointment with Dr Halmagyi, or so I thought, as I got my letter which says I have an appointment with Dr Luke Chen. I also made an appointment with Dr Granot but canāt get in till February and was not sure I could hang out till then especially as I nearly passed out today (does anyone else get that?) I was better after taking some neurofen but it was really scary. However, after what Barb said, he sounds like the specialist for me. Hope all goes well Barb and look forward to hearing your updates!
Manny
If Dr Chen is part of the Hearing and Balance Clinic at RPA youāll be in safe hands.
In the meantime perhaps your GP could prescribe you Prothiaden - thatās what Halmagyi uses (so Iām guessing Dr Chen would be the same). I canāt remember if you said youād tried that med already but if not, might be worth a shot. If it works, great, if it doesnāt you can go to your appointment and tell Dr Chen that.
Thanks Vic & Tina, I really wasnāt sure what to do but Iāll definitely try Prothiaden. Iāve tried verapamil hydrochloride, pizotifen malate, endep {amitriptyline}, epilim {sodium valproate} and lastly proponolol which was great for the vertigo but I got very low blood pressure even on 15mg and any less just wasnāt working. The meds either donāt work or I get unbearable side affects. My last neuro said there were no other meds I could take and said botox injections were my only option. I still donāt know if they work for MAV but Iām not keen on trying them as they are $400 a session, last 3 months only, donāt work on everyone and the effectiveness wears off over time. So, Iām glad to hear there are still more meds to try. Each failure is a bit depressing but you canāt give up on fighting this horrid & debilitating condition.
Hi Victoria
I understand Prothiaden was good for you but can you tell us whether it just helped the migraines or did it help the vertigo as well and if so, what level of meds did you get improvement? My migraines are a lot better at 75mg Prothiaden but the visual vertigo is still a big problem & wonder whether I need to add another med?
Thanks
Barb
Just to clarify, my vertigo is one of my migraine symptoms - itās not a separate thing. The Prothiaden helped with all my migraine symptoms (but it never eradicated them 100%, and I would still get stand alone āmigraine attacksā every once in a while). In my own experience Prothiaden is great for reducing the intensity and frequency of all symptoms and Valium is helpful for acute attacks of some symptoms such as anxiety.
Thanks Victoria
Dr Granot said I could up the Prothiaden to 150mg so hopefully if I continue to increase my dose the vertigo will improve. Like many other MAVers I really hate taking medication and I didnāt really want to keep increasing the dose if the migraines were under control. However, if it means losing the vertigo as well Iāll keep tracking up. Re-reading Dr Granotās notes he probably means to up the Prothiaden until both symptoms are alleviated.
Thanks for the info
Barb
I am so glad to hear of your good report with your doctor visit!!! If you all are talking about fullness in the ear, that is a migraine symptom. Do any of you have the book āheal your headacheā by Dr. Buchholz? This is an excellent book for us!!! It goes through ALL symptoms that we struggle with as well as so much more. after 4 years of this, I still refer to his book!
I would also highly recommend The Migraine Brain by Carolyn Bernstein. Check out the audio section on this forum for a an interview with her. While the Buchholz book is very good, I think the Bernstein book is less dogmatic.
Just resurecting this thread as I had my first appointment with Dr Granot yesterday.
Like Barb I was very impressed with the amount of time I had with him (at least an hour) - which was reflected in the cost - $370!!! He was extremely thorough and did a lot of balance and reflex tests and typed furiously throughout. I was also encouraged that he does seem to know a lot about migraine.
He agrees there is no doubt I have migraine, the question remains if there something else as well. He thinks Meniereās is unlikely given how well I have responded to migraine meds in the past. He does want to check for an arterovenous malformation (I Googled it, a bit scary) or anything else wrong with my brain so Iām having an MRI tomorrow.
Several times he asked about headache/pain following scintillating scotomoa and several times I had to repeat that I donāt have pain. Feel very āhungoverā, woozy, confused, washed out etc, but no head pain. Occasinally Iāll get bad sinus/face pain, coat hanger neck, ear pain, head pressure and even body aches but a simple equation of āaura ā headacheā is not my experience.
When I see him again in a few weeks weāll discuss a treatment plan but, he wasnāt keen on Topamax, doesnāt think Valium helps for vertigo, doesnāt believe foods are a trigger (Halmagyi also doesnāt think they are) and was advocating for Periactin as a prophylactic and Voltaren for acute attacks (he reckons it reduces intensity and duration of the aura).
I also asked him about optic neuritis and he said categorially it is not caused by migraine but did say if my previous MRIs showed no lesions then that is an encouraging sign that my chances of going on to be diagnosed with MS are pretty low. Yay!
doesnāt believe foods are a trigger (Halmagyi also doesnāt think they are)
ā End quote
Funny ā I had a slab of chocolate cake yesterday and am walking around in the heaviest fog ever. Someone at work asked me if I was OK this morning I look so trashed. First time Iāve been asked that at work!
doesnāt believe foods are a trigger (Halmagyi also doesnāt think they are)
ā End quote
Funny ā I had a slab of chocolate cake yesterday and am walking around in the heaviest fog ever. Someone at work asked me if I was OK this morning I look so trashed. First time Iāve been asked that at work!
ā End quote
Hey! Donāt shoot the messenger . Go back and see Granot and set him straight. And get that MRI.
Vic, you said Voltarenā¦ Voltaren as in Diclofenacā¦? NSAID. That is the only Voltaren I know, and I have it now, in pill form for my pain. Which doesnt help me at all. Not to mention if you dont eat with it, it can cause a tummy ache.
Good luck!
. Go back and see Granot and set him straight. And get that MRI.