Just found these boards and looks like a great source of information and community. I’m 15 months into an MAV episode(s), although in hindsight I’ve probably had it for much longer (diagnosed with Vestibular Neuronitis in '96, had little flare ups for a day or so ever since … until Christmas 2010, when the vertigo decided to set up camp and stay). I don’t get symptoms quite as severe as some - persistent light headedness and rotational vertigo. sound sensitivity but thankfully no headaches, or at least very few. But as a 39 y.o. father of two (aged 3 and 1), trying to run my own business, it’s certainly enough to put a real dent in what I can do or achieve.
Currently I’m on Sibelium and that does part of the job, but not all. Have tried quite a few meds, with varying degrees of success. Verapamil did nothing; Sandomigran worked well for about 6 months - I was virtually normal - but then (on my son’s 3rd birthday no less!) I woke up horribly dizzy despite being on a full dose. Am currently trialling Effexor alongside the Sibelium - my neuro reckons he has prescribed Effexor twice now, and thinks that there shouldn’t be any interactions. Given I’ve been on 20mg Sibelium, twice the normal dose, I hope he’s right.
I have a few questions I’d like to throw out there:
Anyone else on a similar combination of meds? How have you found the Effexor. I’m 5 days in (starting on 37.5mg) and I’ve been a zombie most of the time, although that’s starting to fade now
How important have people found following the migraine diet to be? I followed it about a year ago for almost a month and found no difference; these days I eat pretty well although I still have 2 cups of coffee a day, and probably eat more nuts and ham than I should … although I went off coffee for 6 weeks last year, it made no difference, so I brought it back in. Neither of the neuros I have seen place much stock in the diet side of things … would be keen to know what everyone thinks
Further to the dietary stuff - which foods have people found to be the biggest triggers? Have people found it more helpful to go off everything, and bring things back in, or to cut out potential triggers whilst maintaining their ‘normal’ diet
Also - has anyone found any problems with Soy Milk? I don’t eat dairy (IBS related), so was wondering if anyone has any bad experience with soy. I note that some soy milk may have msg in it …
Sorry, I’m not on a similar combination of meds (although like you I was on Pizotifen/Sandomigran in the early days, and had amazing success with it).
With reagrds to the diet, I’ve been on a pretty strict migraine diet for over 2 and a half years now - it’s become a way of life, really. I haven’t found many specific triggers, except maybe red wine and ‘aged’ ales/beers (and especially when the two are mixed together! ). But, I stay on the diet simply to reduce the number of variables and therefore be in a better position to judge the effectiveness of any medication (read ‘drug trial’!) that I’m currently on. If the diet isn’t reasaonbly stable, then I just know I’ll be constantly questioning myself - “I felt bad yesterday - was that because of the increase in dosage of my drug, or because I had three cups of coffee instead of one, or a ham roll…”? There are so many potential triggers/inputs into the MAV equation (stress, diet, sleep, tiredness, drugs, weather, etc, etc) that I find if I can control at least a big part of it via the diet, then it makes it a lot easier to judge the effectiveness of the latest drug you’re trialling.
Sorry I can’t help with your medication question either, as pizotifen (sandomigran) was the one that worked for me. I took it alongside propranolol to start with, but once my MAV was under good control I just took the piz and it seemed to keep things at bay by itself.
Re the diet, I would treat this with some caution, as it’s never a positive thing to be excluding foods that are good for you unless there is a very good reason to. (I work as a nutritional scientist/researcher by the way, so always have a bit of a bee in my bonnet about balanced diets.) You’re already excluding dairy from your diet, so if you were thinking about doing the full-on variety of the migraine diet I would think you would benefit from seeing a dietician. The scientific evidence isn’t really there for this diet (or at least it isn’t at present), but I know some consultants think it’s a crucial part of migraine management, but more probably see it as something to try and see what happens, and some think it’s a pile of nonsense!
Personally I tried eliminating the main triggers - cheese, caffeine, alcohol, citrus fruits and chocolate. I found this hard enough, especially as I have a family to cook for. I avoided cheese, caffeine, citrus fruits and chocolate for 6 weeks and saw no benefit so added them back in again. I already avoided alcohol totally because I find it affects my balance detrimentally and also it’s a big trigger for my headache migraines. That’s the only food/drink trigger I have identified.
Welcome! It sounds like you have a common story here. I also dont really get headaches, just a few mild-moderate headaches that I otherwise wouldnt consider to be migraine.
The migraine diet doesnt really help my dizziness, but I do notice that caffeine and hotdogs sometimes give me mild headaches. In a person like you, I still would avoid things like caffeine and chocolate because they may be contributing to your trigger load, even if you dont see a direct correlation. Its possible that these are triggers only when combined with other triggers like stress, other diet triggers, etc… I think a lot of doctors would tell you that its okay to have triggers if they dont bother you. But I prefer playing it safe. I have switched to decaf coffee and soda, and only eat a tiny bit of chocolate.
Trying a completely trigger free diet is too hard for me, so I just illiminate one thing at a time. Its certainly not the best way, but does work. Like I said, I have noticed weird things happening in my head after eating hot dogs and drinking caffeine. These are easy things to avoid, so I just avoid them now.
I have tried soy milk, it certainly didnt make me worse. But should probably be avoided if it has MSG. I wonder if rice milk has MSG?
I reckon I’ll try the diet side properly for a month and see if it does anything. Back to decaf it is! Joy. I’ve been alcohol free since before I got vestibular migraine, as I used to get headaches while drinking my first drink. In retrospect that probably tells me something.
Hi, also new. I was pleased to note you are in Melbourne. My Neuro has provided a special TGA approved scrip. for Sibellium. We are supposed to try it on my vestibular migraine for 4 weeks. That was 10 days ago. So far I cannot find a pharmacist to fill the prescription. Are you able to let me know where you are accessing it please.
The “S” is my last hope as I have proven to be stubbornly resistant to all previous meds.
My Thanks for your time and I hope you have had positive results from your treatment.
Hi, also new. I was pleased to note you are in Melbourne. My Neuro has provided a special TGA approved scrip. for Sibellium. We are supposed to try it on my vestibular migraine for 4 weeks. That was 10 days ago. So far I cannot find a pharmacist to fill the prescription. Are you able to let me know where you are accessing it please.
The “S” is my last hope as I have proven to be stubbornly resistant to all previous meds.
My Thanks for your time and I hope you have had positive results from your treatment.
— End quote
Hi! Could you let me know how you feel with Sibelium? The doctor also prescribed it to me but i am worried of taking it because of the side effects. Thanks!
). But, I stay on the diet simply to reduce the number of variables and therefore be in a better position to judge the effectiveness of any medication (read ‘drug trial’!) that I’m currently on. If the diet isn’t reasaonbly stable, then I just know I’ll be constantly questioning myself - “I felt bad yesterday - was that because of the increase in dosage of my drug, or because I had three cups of coffee instead of one, or a ham roll…”? There are so many potential triggers/inputs into the MAV equation (stress, diet, sleep, tiredness, drugs, weather, etc, etc) that I find if I can control at least a big part of it via the diet, then it makes it a lot easier to judge the effectiveness of the latest drug you’re trialling.