Hi,
I thought I would post again as no one has responded to my previous post.
I am 41 yr old female, diagnosed with MAV in Feb 10 after about two years of dizziness intially diagnosed as BPPV. I am being treated by Dr John Waterston & my GP. I commenced Sandomigran 2 months ago after disasterous attempt with another drug Propranolol I think.
Sando worked well until 2 weeks ago when I started to get falling sensations & am now back to being dizzy everyday, not as bad as I intially was but bad enough for me to see doc. IHave been taking Epilim about 10 days now & still having attacks of dizziness, had a really bad one starting last Friday night through to Saturday night, back to ok Sunday & then bad Monday through to today.
Is it a case of trialling medications until you find something that works. I have tried eliminating foods & caffiene etc to no avail & I find every time I need to see a specialist it can be up to 6 week wait which means by that time I am back to the worst possible state.
Since starting the medication I am getting bad headaches & I often feel like someone has beaten in the back of my skull with a baseball bat.
I would appreciate any advice at all. I have read lots here but struggle to remember where I saw different bits & when I am really bad just searching through all the information is a struggle.
I hope someone can help, feel like I am on the worst merry-go-round.
Sorry to hear you suffer with MAV but I’m sure if you stick with this board you will find information that is useful to you and quite possibly your doctor as well (many of them do refer their patients here).
Like all of us I guess you are hoping for a magic bullet - the one treatment that works for everyone. Unfortunately that isn’t the case for most people. There is, as you say, a lot of trial and error - not just for the right medication but also the right dosage and even the right combination of medicines along with ‘lifestyle’ adjustments such as diet.
Many people here have had good results with a book called Heal your Headache. As basic as it may seem, most people see some degree of benefit by simply sticking to a regular sleep schedule, moderate exercise and so on.
Other than the general discussion area the board index includes a lot of information on different classes of drugs, diet and lifestyle and so on. You may find a lot of answers to your questions there.
I do hope you get some relief soon and hang in there.
Hi Niko,
Victoria hit the nail on the head.
Some people find a med/ or med combo that fit’s quickly, others take a while.
After a Correct diagnosis 4 years ago, I started trailing meds and haven’t stopped; it’s a long ride that’s for sure.
Med trials are exhausting and frustrating!
I’ve learnt all I need to know via the web, learning about what meds ect, to use.
As Vic said, this site holds a lot of info “provided by patients”, who better to get info from.
Here is another site, you can learn about migraines and medication options.
I have referred to this site many times.
Two weeks ago, I didn’t think I’d survive, I mean
How can someone feel this sick and not die?
After starting a new preventative this week, I’m feeling like life is worth living again, my symptoms are very low, that gives me hope.
Thanks for your responses. It gives me the hope to keep trying. Have been feeling a little better the last two days so I guess I will just see how I go
Above all be patient with the meds…a good month or so to really figure out if it’s working. I’m on Effexor which is doing the job for the mostpart. I still get dizzy upon movement…but little head pressure and I can think again. It’s not 100%…but as a friend told me, I have to get used to a “new normal”.
Jen,
I took a look at the Migraines.org (“MAGNUM”) web site. I am a bit leery about them. For instance, they say unequivocally that “despite what some articles say,” caffeine is not a trigger. Other statements I am going to doublecheck against NIH.
All the best,
David
I’d imagine any stimulant is going to affect us Mav’ers.
I can’t speak for ordinary migraineurs.
But if I have a coffee during my visual aura faze, the migraine will sometime dissipate, yet at other times it caused a migraine.
Complicated migraineurs ie: familial hemiplegic migrainures , coffee is a trigger it’s well documented.
Geesh when I asked migraine .org about migraine and dizziness they knew nothing about it.
It’s as per usual, us migraineurs are the last on everyone’s LIST. :twisted:
Yeah, I think that’s bull. Caffeine definitely sets me off. S
— End quote
While I don’t like the phrasing of the the MAGNUM’S site about caffeine (any all-knowing sense comes across as a red flag to me), I can say that caffeine actually has a different affect on me. My doc doesn’t want me to use it so I rarely do (and she freaked when I told her I did with the Aleve - said NO don’t! - it will damage your liver or kidney or something), but prior to using prescription Aleve (naproxen sodium) and getting Imitrex which I have yet to use, I always counted on Excedrin to stop my migraines. And it still works! The combo of caffeine with aspirin and acetaminophen really worked(s) for me, at least in stopping it pretty fast. I wouldn’t say it is a trigger for me in having a migraine (but then again, I wasn’t an abuser.)
