I have only just come across your post, I have MAV and saw Dr S in Dec 2011/12, I was able to control my condition with diet and VRT excercises tailored to the damage I have to my inner ear. Medication would have been the next step but I didn’t need it. My diet sheet was exactly the same as yours but I found out from him and his physio lady later that I was not to eat any dairy from a cow but sheeps and goats cheese, milk etc are fine. This is what I did and after about 5 months I was pretty stable and able to reintroduce things, now the only things I dont have at all are caffiene, chocolate, wine or alcohol (apart from the odd small glass of white or sparking white) or a lot of citrus (the latter for another reason but I do have some). Since then I have got my life back and although I have the odd relapse mostly caused by a succession of stressful incidents, I am more or less back to how I was prior to all this and know that after a few days I will be feeling good again. The VRT started off at 3 times a day for about 20 mins now I just do it twice a week for 5 mins so its nothing. I cannot praise Dr S highly enough, I went all round the houses trying to find someone who really knew what was going on and like Jem had to pay for the initial visit then he arranged for it to be on the NHS.
I saw him within a week for the initial private visit and was then moved to his NHS list. The cost 4 yrs ago was £180 but I think it depends on how long you are with him and i cant remember how long I had, it was quite a while. I had one follow up visit and several phone consultations as I dont live near plus an MRI near where I live all on the NHS.
Hi there. I’m under Dr Surenthiren at the moment but have a couple of questions as you saw him for so long. I’m very careful to follow the diet sheet too but I was under the impression that little bit of butter or a little cow’s milk was ok. Should I be avoiding those too? Also do you know if hard goat’s cheese is ok or is it just the soft fresh stuff? I’m assuming the hard cheese has aged for longer - does this matter with goat/sheep cheese? Sorry, one last question! I’ve seen quite often that white chocolate is ok for migraines, do you know if Dr S allows this or is that a no no too? Not sure how I’ll get through easter without raiding the kids’ easter eggs Sorry, I’m not seeing him until September. I also have some questions about the medication, do you know of it is possible to get questions to him outside of appointment slots? That really was the last one!
I dont know if a little bit of cow dairy is OK or not, he did say to me at one stage that its like a scab healing and you can be doing alright but then eating something on the banned list is like picking at it and the healing has to start all over again! It may also depend on how full your ‘jug’ is - if there is nothing much else going on to fill it then a little of something if you must have it is probably OK. I must say I was so desperate to feel well again that I was pretty religious about avoiding everything I was told to, it was worth it to find I was getting better. Now, a couple of years on I find that I can get away with a small piece of choc etc sometimes but I dont do it if I have something on the next day as I find its a day later that I wake up again feeling sick & unsteady. In fact after 4 years or so with no choclate I’ve lost a taste for it. I imagine its banned because of the cows milk in it and/or the caffiene and if thats in white chocolate then that will be off limits too. I didn’t ask about it as I never liked white choclate, too sickly. I’m back on cow’s milk etc now (and began introducing it again after 5 to 6 months when I was stable) but again dont have loads, I sometimes swap for almond or rice milk or sheeps cheese instead of cow’s cheese etc, there are also plenty of alternatives to butter. I thinki Dr S’ attitude is if you say oh but I cant do without X is that its maybe better to have a tiny bit now and again rather than to stress about it! But as I said I htought it was worth doing teh thing ‘properly’ to try and avoid setbacks. I wasn’t on medication as I said but I’m sure if you rang his sec re the meds she would get your question to him.
Thank you so much. That is really helpful actually. I do have a lot going on to keep my ‘jug’ topped up so I need to take control of the things that I can. I am pretty diligent with the food, but I’ll use a little bit of butter (I think but is better than lots of those vegetable oil spreads generally - I try to eat real, whole foods) but maybe I’ll rethink that. I drink redbush tea and usually put a splash of oat milk or whatever in it, but sometimes will put in a splash of cow’s milk instead. I’ll stop that. It was the closest thing I could get to a proper cuppa!
Thanks for your reply. It’s good to hear success stories and know there’s light at the end of the tunnel!
Glad to be of some help, it was emphasied to me that stress is one of the biggest factors as well as diet and to try and keep on an even keel, not always easy! I much prefer butter to spreads, I had used a spread called Pure but was glad to give it up and go back to butter when I could. With the tea I drank Redbush or other herbal ones, lemon & ginger etc but with no milk of any kind and got used to it, I still had decaf coffee which tastes much the same as that with caffiene. If you’re eating a good diet with wholefoods etc you are doing well. Its a shame you aren’t going to
him again till Sept. Are you doing VRT, if so you could maybe ring and speak to his physio if you have any questions re the diet, the one I spoke to was quite genned up about it. All the best and good luck, I’m sure you’ll come out the other side before too long.
Hi again, Shirley. I randomly came across some goat butter, alongside the others in the supermarket. For some reason I was quite surprised so thought I’d share! Twice the price of course!
For a while I was going above and beyond Dr S’s diet- following the ‘heal your headache’ one. Do you know it? Anyway, Dr S told me it was too restrictive and it makes food become a stress in itself, so I reined it in mostly but still watch nuts, nitrates etc. You mentioned almond milk before, which I always used to use, have you found this and whole nuts to be ok? How about deli meats etc?
He definitely seems to view stress as the major factor, above other things. I’ve made a good effort but it is quite a hard one to remedy! I saw him last in December and I guess he thinks I’m making good progress (touch wood) so didn’t think he’d need to see me until September. I had 4 weeks or so late last year when I’m felt normal then went down hill, so I felt he didn’t think I was too far off getting on top of it. So no VRT either. Past couple of months I’ve been reasonably ok, I can get on with things, but can’t quite get back to the great spell I had. Frustrating!
Thanks for your tips!
Thanks for the tip about the goat butter. I have read ‘Heal Your Headache’ but got rather bogged down with it all so stayed with the one Dr S provided which is quite restrictive in its way especially when eating out mainly because of no (cows) dairy. Apart from the 6 Cs he also had on there things like bananas and pineapple but I do eat those now, in fact everything except for alcohol, caffiene & chocolate. Nuts weren’t mentioned and I eat a lot of nuts, everyday in fact in things like museli, smoothies (I have a Nutribullet), stir frys etc and they don’t seem to affect me. I eat ham sometimes but not that often. I sometimes make my own almond milk which lasts for several days in the fridge. Try the Deliciously Ella book/website. She found a cure for her own illness with diet and although the receipes are manily vegan, gluten free etc they are very tasty and quick to do.
Backward steps are to be expected. My recovery seemed to be one great day then several off ones but gradually there were more good/great days than off ones and after about 5-6 months I was having mostly good ones, the off ones usually related to stress. Last year I was pretty good most of the year which was quite eventful with several funerals including my Mum, a significant birthday for my husband and our 40th anniversary. We also had a busy trip abroad and other stuff going on and after all that which was mid Oct by then I started going downhill culminating at Christmas by my being really ill for several days. I think I’d neglected the diet & VRT so in Jan I took extra care and am now back to where I was, in fact I got back within a month. Everyone is different though and responds to different things. It may be that you do need to continue with the VRT, I know that I have to keep it up even if only twice a week now. If you feel that you need to see Dr S before Sept and dont get anywhere by phone you could consider if he would see you privately? However, if you’ve been reasonably OK you may well be able to manage it yourself. If you have a problem sleeping, I did because of the anxiety etc try the 4-7-8 yoga breathing method (see youtube), I sleep really well now most of the time and although I did get sleeping pills from the GP several years ago for emergencies (on average I only took them once or twice a month) I rarely need them now.
Keep positive and tell yourself tomorrow will be another day!
Hi, just came across this coversatin yesterday.
I have been struggling for over 2 years with dizziness and all the symptoms described. I have an appointment to see dr S in two weeks.
I will start cutting out all the 6 C’s. I really just need to get my life back on track as a normal 28 year old. Have been missing work and it has ruined my previous relationship. Just need some hope
Great post - it has explained MAV more than any I have seen on here…would love to meet Dr S.
This is the post all users should read…
What does doctor S say about beer?
Hi would you be able to tell me what you did for VRT? I’d like to see if I can find something similar here in Canada
it’s been six weeks since I saw dr. Surenthiran. was pregablin 25mgs increasing dose and all diet restrictions. Have been doing much better…not as dizzy and have been feeling more like myself. However the last two days my brain feels foggy again and dizziness is creeping back again. Really get low when this happens even though I know it’s not gonna be smooth sailing… Just hope it settles again over the next few days. have a really important presentation at work this Friday so need to be OK for that! Find it hard to stay positive, don’t like annoying family about it all the time as they in Ireland and just worry.
Anyway so fingers crossed. Hope you are all well
I found this post after seeing a reference to it in another old discussion thread. WOW, this is great information. If @Jem is still on these forums, THANK YOU for posting it. Dr. S sounds fantastic and the analogies really help explain VM and how the brain gets “overloaded” in someone who has VM. I hope he was able to help you!
Hi Jem, I just came across your post and have been to see Dr S. I have the same diagnosis. Just wondering how you are getting on these days? Just looking for some hope really! X
11 posts were split to a new topic: Just Stumbled Across this Site
Try to find out if there are any neuro otologists near you, or any doctors with an interest in MAV or VM and ask your GP to refer you. There are headache clinics out there too. I think starting the diet is a good thing to do, at least psychologically you are being proactive in managing the condition. There are lots of migraine diets out there. I used to do the Stecve Bulchloz one from Heal your Headache (book) but the six C’s diet which Dr. S recommends is much easier . I do think giving up dark alcohols, caffeine and keeping to a regular sleep pattern do make a big difference.
Both Dr S and a headache specialist I saw said that the main thing was to get started on a med, take your pick and if it helps with a co morbid condition go with that one (e.g. if you have high blood pressure then propanalol can also help with that). I don’t know what age or sex you are but for me the peri menopause (mid fifties) has lobbed a big bomb into my life in terms of this condition.
I think part of the skill of the specialist is knowing the dosage ot the meds you need to take and for how long you need to take the meds.
A few years back, I took Amitriptyline (after a chat with my GP) and it had started to help but my GP said that as my headaches were subsiding I could come off it . I was only taking 30mg for a few months, so it probably was helping but I came off it way too soon. A specialist would have known to try maybe upping it a bit and certainly to advise me to keep taking it for a least a year or so.
Good luck. There is so much information on here and links to great artcicles.
Away from London and the South East they are pretty scarce. Goodness knows why. I’m sure there would be plenty of demand. The system @jojo65 has in the North East seems would be a good model for others to copy and must surely be effective use of resources whereby there exists a Go Between Nurse who has access to the consultant between appointments for ‘management assistance. Some regions do run so called “Headache Clinic” but often this is just a posh name for ‘Diagnostic Centres’. Far too many sent people on their way with consultants assuming GPs fully understand migraine prevention when that is more often than not simply not the case. That was how I got caught spending fifteen months on too low a dose of Propranolol. My GP was under the impression you needed to take as little as possible. When it didn’t control the symptoms, she just kept telling me ‘it won’t stop it completely. What you have is As Good As It Gets’ or ‘You are a complicated case and I don’t understand anything about it. They say it’s ‘migraine’. Um’. Which is a parallel to your own Amitriptyline experience. There are obviously gaps in the system that need fixing before too many more people fall down the cracks.
So very true AND UK specialists do have access to some drugs ie Fluarazine, GPs don’t and can also prescribe over recommended dosage if appropriate. Helen
Hi Jem. I saw Dr Surenthiran. He said pretty much the exact same to me. May I ask how you have been since (I realise 7 years is a long time!). Did you follow up with him? Which medication do you use?