So I’ve made my appointment to see Dr Surenthiran on the 18th, but after so long of all this I can’t seem to find much enthusiasm. I’ve trawled the forums, and found several people who see him and have had a diagnosis, but have any of them actually improved??
Are there any success stories out there? Is anyone actually any better than they were? With Dr S or without :?
Hey Sally,
I know this road really sucks to walk down but people do improve and see symptoms resolve when they find the right combo of lifestyle and meds. Have you read through the success stories? Some in there went to hell and back and now lead normal lives without this junk interfering.
I hope Dr S can come up with a new strategy for you and leave you feeling like you’re on a better path to sorting this out.
Scott
Sally don’t feel down. Dr S is a world expert. His success rate is brilliant. It may take a while but he will sort you out. The only problems occur when like me you are menopausal. This time he told me can be tricky. In many cases he just gives the right meds and you are sorted.
Thanks guys. Just feeling shit about the whole thing. I found a post of yours somewhere Fiona about meds he prescribed, and you listed a few - does he only use those ones? I was kinda hoping he might try me on Prothiaden as it seems to be a bit of a kinder med than some of the others but that wasn’t on your list. Also is he up on other stuff as well as mav as I’m not even sure that’s what I have :?
Thanks Scott - I’m gonna have a read through the success stories x
Hi Sally,
I’m really sorry to read how down you are feeling, but I totally understand as I was there last summer. I had a nightmare August including being carted off to A&E in an ambulance from work, and forcing myself into a car (not driving!) for a 6 hour journey to/from Cornwall so I didn’t ruin the family holiday. I spent the first day lying in bed hardly able to move, and then another couple needing a stick to walk, although by the end of the week I had recovered enough to walk unaided. Anyway, at that point I just could not envisage having a normal life ever again. It used to make me cry to think of my kids having to put up with a mother who couldn’t do any fun or active things with them.
However, since then I seem to have eventually found a combo of medication that worked for me, and I have got my life back. I’m working full time, and have managed to go on trains/buses/escalators which I couldn’t do at all before (due severe motion sickness problems caused by the MAV). I can’t say I am 100% as I still find some things diffcult (travelling, the supermarket etc) but I can do them all now, and I am pretty much leading a normal life. I go running twice a week too, which was hard to start with, but once I got used to it, it’s been really good for me.
I just wanted to write you a quick note to say I’ve been there too, but things have improved a lot for me, and hopefully you will get there too. Dr S is very highly regarded, from what I have read about him on various forums, so you will be in very good hands.
Take care.
Hi Sally,
I know exactly how you feel. When the migraine is chronic and even getting worse day by day it truly seems impossible to live. It is no life. I have been housebound with this shit for weeks at a time and on the verge of a break down (more than once). Chronic migraine drains you body, mind and soul. It’s crushing.
BUT the good news is plenty of us get well. I have and many others also. Read the success stories. Also keep in mind that many people come to this forum in their darkest hours (days, weeks, months… 
) but move on once the pendulum swings back up.
Hang tough.
Vic
Thank you xx
Vic, that’s a good point actually. There’s bound to be more people on these forums who are still suffering, as probably many of those who improved stopped posting, as they are enjoying a life instead lol. It’s nice that some of you stick around though, and I do feel encouraged by the fact that you’ve improved.
Beechleaf, what meds helped you? I know we’re all different, but I’m interested to know which have helped people. I feel really sad about my kids too. They are growing up now - 10 and 15 - but they have missed out on so much stuff - cancelled trips, aborted holidays, etc, plus a Mum who is down a lot.
I’m also worried about the diet stuff. If Dr S does say it’s mav then I guess he’ll put me on the migraine diet, and as I’m appallingly bad in the kitchen I will be totally stuck on what to eat. Think I need some cookery classes lol.
I’m also worried that all the posts I read on Dr S are mav diagnoses. I mean everything can’t be mav, can it? I don’t even think mine is mav. I think I’m just mad really, or I’ve got some weird eye thing that no-one’s diagnosed. If I could see properly I don’t think I’d ever feel dizzy. I don’t even know if it is ‘dizzy’ - it’s so hard to explain, I don’t know how I’ll even explain it to Dr S :?
Ugh.
Sally
If you’re worried about Dr S being too focussed on MAV, then don’t be. He is a world expert on all types of balance disorders. Just Google him and you will see all the areas of his expertise. He has been interviewed in various newspaper (The Guardian and Telegraph I think) and has even treated celebrities (some guy from the Beautiful South). He’s not God but he’s a dizziness guru!
He is likely to say to you he sees about 20 people a week with similar conditions. In all he told me he had seen 2000 cases like mine and he could count on the fingers of one hand the people who are not better. He could picture their faces!
I had a look through all your posts and realise you didn’t give a ‘my story’-like introduction to the history of your condition. Sorry if you did and I failed to see it! Dr S will take a detailed case history from you so please go armed with a detailed written timeline of all your symptoms, when, where they occurred etc. If it isn’t MAV, he will know and it may be he recommends more instrumental tests like hearing tests etc.
He does seem to have a preferred meds regime but he tailors it to the person. I have been on dothiepin (Prothiaden) for years and it has not helped my MAV. I tried amitriptyline with mixed results but horrid side effects and came off it (this was before seeing Dr S). From what I’d read, I was certain he was going to put me on nortriptyline, but he didn’t. He prescribed pregabalin (Lyrica) probably because of my associated high anxiety and possible beginnings of the perimenopause (I’m 43, but have had MAV since the age of 36, but also had it between the ages of 18 and 24). It is helping me enormously at the moment but I’m being a bit quiet about this on this forum as I feel it’s early days.
So don’t worry about Dr S. The only thing you can do at present is try and be patient. But you can be proactive as I said and get everything written down before hand so you can give him an accurate account.
All the best
Dizzy Izzy
Just read your latest post which you must’ve been writing simultaneously to me but you got there first!
If it’s not MAV, then Dr S. is the best person to point you in the right direction. Much better than any GP will be able to do.
D-I xx
Thank you, yes, you’re right - he will be much better than my GP. The 18th can’t come soon enough really can it?
I’m so pleased that you’re feeling a bit better, and I know what you mean about not wanting to post it - you probably don’t want to jinx it or speak too soon! Fab news though - I really hope it continues for you x
I’ll try to get everything written down. It’s so hard to remember though with my brain being such a muddled mess lol, but I’ll have a go. Don’t you find also, that you lose track of what’s ‘normal’ and what’s symptoms? It’s all a bit complicated - if only he could just sort of open a flap and get inside my brain to have a look - that would be much easier 
Thanks everyone for your replies. I’m worried about meds now - just a big worrypants this morning lol. DizzyIzzy, what were your side effects on amitriptyline? I’m terrified of taking something that might make me worse.
xx
Sally,
A good idea might be to read the stories in the ‘My Story’ section and then write your own. It might help you clarify for yourself what your symptoms are, your history, meds you’ve tried and so on. You can then take that with you to the appointment.
Vic
Thank you, Vic - I will x
Sally,
I want to also echo what Vic said about the cross section of people we see here on mvertigo. I think it’s fair to say that the people who are here posting the most are the ones who 1) have an ongoing migraine issue that they have not yet solved or are trying to solve or manage better or 2) people who are pretty much 100% well (e.g. Vic) who want to stick around and help out. We have no way of knowing what happened to the other 700+ members who do not post here any longer or who may drop by for a read and move on. I’m not trying to sugar-coat this but I honestly think the majority get this under control or eliminate it to the point of it being a non-issue in their lives.
Scott 8)
What a lovely thought, Scott! I can’t ever imagine it being a non-issue. In fact I would give anything for just one day of it being a non-issue!!
I’ve posted my story now. It’s very long and I cut it down loads :oops:
— Begin quote from “sallysp”
Beechleaf, what meds helped you? I know we’re all different, but I’m interested to know which have helped people. I feel really sad about my kids too. They are growing up now - 10 and 15 - but they have missed out on so much stuff - cancelled trips, aborted holidays, etc, plus a Mum who is down a lot.
— End quote
Sorry for the delay in replying Sally, but I have been away with work most of the week.
I took 1 mg pizofiten and 40 mg propranolol. This helped quite a lot, but I got a much better improvement once I got the propranolol up to 80 mg per day. I haven’t had any bad side effects luckily. I have felt more tired, but to be honest I also felt really tired before starting on the meds, so I think that’s possibly due to the MAV as much as the medication. The pizotifen had a side effect of stimulating my appetite and I put on some weight, which I wasn’t too happy with, but it wasn’t all that much in the great scheme of things, and it was better than being dizzy! I cut it down to 0.5 mg and was ok on that and my appetite dropped a bit too. But then I cut it out altogether and have noticed I’m getting a bit worse again (I will post about this separately). But honestly the 1mg pizotifen plus 80 mg propranolol really transformed my life. I hope you find something that works well for you. Good luck at your appointment (unless I have missed it, in which case, I hope it went well?).