I have found, as most if not all of the migraine specialists suggest, that lifestyle changes are critical. Have you found anything in that regard that helps? Are you following a regular sleep schedule where you go to bed around the same time and get up the same time everyday with at least 7-8 hours of sleep, including weekends? Have you tried the migraine diet or any other elimination diet?
For me, sleep is important but difficult, and a low-carb diet works wonders but is also difficult. I also avoid MSG, nitrates, and aspartame. Caffeine has been my nemesis all along, but it is gone for good now if avoiding it makes a difference over the next month or so. I actually feel different already after only 3 days, not ācrystal clearā but different and I would say somewhat better.
Thank goodness Ive found this Forum it is the most informative site Ive come across
Im a newly diagnosed with MAV just a few weeks ago, though I diagnosed myself some time ago due to uneducated GPs and Neuros not having a clue about Vertiginous Migraine or is devastating effects on peoples lifes. I listened to Dr Silvers Talk and felt like he was crystal clear about many of the symptoms we faceā¦as for me not so many cyrstal clear days for me as I am in the middle of a FLARE. I found a Neurologist in Scotland who actually understands MAV and doesnt think Im a stressed out female. I think it is unfortunate that the word Migraine is labelled to our condition because it just doesnt give any substance to it at all. I have people say āoh its just migraine thenā even friends and family. They really dont have a clue how awful this can be. Perhaps working in the Medical profession gives me that view patients are handed over to me all the time āoh they just have a bloody migraineā god if they only knew.
Im now on Amitriptylene again! Ive had balance problems for nearing 8 years now. I remember my first migraine with facial weakness aura etc at the age of 11 these dwindled out in my 20s and Bang since 30 Ive had balance problems like marshmallow feet, no spinning, fatigue, numbness,proprioception all off, dull occipital headache on and off though never the classic migraine symptoms I had when young, facial pain, intolerance of smell lights busy environments I could go on ā¦so for now I have to be patience and hope Amitriptylene works again. The diet coke & chocolate addiction is nearly cracked, Im working on the wine bit : )
My neurotologist called it Migraine Associated Dizziness (love the acronym!), which I thought described it well because vertigo always seemed to me to imply a spinning sensation and I didnāt have that.
I suspect the MAV vis MAD acronym is why they generally call it vertigo rather than dizziness. All too awkward otherwise. Telling people āI have MADā. āWhatās that? Youāre mad??ā āNo, no I have MADā. And on and on it would go, like a Marx Brothers skit or else theyād think English was your second language āI hava da madā. Nervous laughter āah, no, here we call it Mental Illness. Nothing to be ashamed of reallyā. :lol:
I am following Buccholzās diet, and Iām eating and sleeping regularly. I havenāt tried eating low carb, but donāt eat much sugar, candy, cakes etc. (only to be polite in social settingsā¦). So Iām doing the right thingsā¦
And I am feeling a lot better than I was a few years ago.
I guess listening to Silverās talk, I almost wished that I drank caffeine or took pain meds so that I could just cut them out and feel better
Scott, thank you once again for posting such a good article.
I found it particularly interesting as it validated my suspicions that cfs/fibro symptoms are linked to or part of migraine. I was disappointed by his comment that discontinuation of a preventative medciation can occur after a year. I think this is a bit of a generalisation as individual responses vary widely. Iāve been on one for two years and when I try to reduce the symptoms worsen so Iām staying on it for now.
Sian
Really interesting talk, thanks for posting this! Makes me realize that I had migrainous tendencies all my life, but they did not manifest with head pain. Instead, it was more of the stomach kind of stuff, and in the last two years, the dizzies. Itās interesting that many folks who think that people who get migraines are just hypochondriac freaks, may also unwittingly be carrying that tendency, and this condition could sneak up on them at any time, like after a head injury, hormonal changes, virus etc. Dr. Silver certainly raises the statistics on migraineurs!
But damn, how I wish I had been taking pain killers or drinking coffee, eating chocolate etc., so I could at least have hope in my heart that I would go into withdrawal and then feel better. But none of those things. Whatās my brainās excuse for this 24/7 rubbish? I guess clean livinā aināt good enough! LOL
Yeah, the MEgraine thing did my head in too but youāll get used to it. Itās actually the British and South African pronunciation. I think Americans turned it into MYgraine and it took hold worldwide.
Hilarious! I was thinking the same thingā¦but then I wouldnāt wish this on anyoneā¦on second thought, I"m sure I can think of someone I would give it to!! LOL
Can I just say I love our forum??!! You guys are great and really help me deal with this nonesense!!
Have a good one!
Kelley
Hi all, just to quickly say Iām new to this board but not new to this disease. Having had a blissfully symptom free five years with the help of pizotifen I am now three months into a mammoth relapse.
Aaanyway, Iād also been pointed towards the audio file that youāre discussing here after a chat with Dr Silver and re the caffeine discussion, just wanted to emphasise that he was totally adamant re absolutely NO caffeine at all. Since my last episode of this illness Iād stayed off caffeinated drinks but had been eating a few squares of chocolate here and there. When he was asking about this he said even tiny amounts could ruin the effects. Very sad for a chocoholic like me but bring on the cake!!. Also re de-caff tea, I know there are various schools of though whether this is allowed or not. I told him I drank this - a couple of cups per day, and he was fine with this.
I know from a friend that it was you that made this recording known to us all. Thanks very much for doing that. This talk is one of those once every 5 year events as far as Iām concerned. The new info from Silver about his experience with caffeine and painkillers is VERY important to know and a real gold nugget. I had no idea about the painkiller thing, at least not the way I was using them. As of 9 days ago and having listened to this recording, Iām off the lot.
I hope you get this thing back in the box again soon.
Well, Iāve had my last cup of coffee this morning - as long as I donāt crack. I have to say I find it very hard to believe that one cup of coffee a day can be causing all this crap, but hey I guess I have to try it <grumble, grumble. grumble> I know itās pathetic and childish but my one coffee is one of those few things that makes me still feel like a normal person and darn it I donāt want to give it up! [I donāt consume any other caffeinated beverages or products. said bye bye to chocolate some months ago]. I also rarely take the pain killers so thereās not much I can benefit from on that score
Scott have you noticed any difference being painkiller free - or is it too early?
Dizziblonde did he make any comment about decaffeinated coffee (the water kind which doesnāt use lots of nasty chemicals Iām thinking)? I know I know Iām a drowning woman clinging to the proverbial coffee lifeboat :lol:
VIC youāre a crackup
Now that Iāve got my internet connection back up to something resembling broadband (eventually diagnosed the problem as a faulty phone point) Iām going to listen to the audio file as it wonāt take a week to download now
I guess I am a child as well.lol I just bought a Fancy Kuerig with tons of variety coffeeāsā¦lol This is my only issue as wellā¦ I dont take painkillers, chocolate, alocoholā¦ but my coffeeā¦ I feel like I will have to have a funeral when I take my last cupā¦
Ah I know, I know, seems like removing all our lifeās little pleasures. He seemed very convinced that ANY caffeine at all could be the difference between the preventative meds working or not (sigh). Sorry guys, but if he wasnāt entertaining my quote ācouple of squares of chocolate a dayā, he aināt gonna approve of that latte lol :shock:
Didnāt ask about decaff coffee Iām afraid as Iām (luckily for me) not a coffee drinker, will try and remember to ask for you though next time I speak to him and let you knowā¦ Hx
Scott have you noticed any difference being painkiller free - or is it too early?
ā End quote
Gabrielle ā itās always hard to rate these things but I do think I have improved beyond some sort of placebo or confirmation bias effect (though that could be part of it). One thing Iāve noticed is a lot less stiffness in my joints when I wake in the morning or on any given day. Iām also finding that I can weather the headaches and pain quite well without the painkillers. Overall, things seem to be better though Iām not magically feeling fanatastic. I never even considered that pain meds could contribute to pain, afterall, they are pain ākillersā. Iām glad to be off them.
