The Vestibular Migraine Community

Epilim


#1

hi guys, i have had a huge long haul with MAV or vestibular migraine as my neuro calls it… its started with two bouts of BPPV. i spent about 10 months trying different medications and basically not being able to walk, read, watch tv, use a computer, sometimes i couldnt talk, no light, no sound - the list goes on. i was also in hospital on numerous occasions with stomach pain (beyond pain - excruciating, not sure if its related or not). had MRI’s CT scans, all sorts of tests.

tried Endep, Allegron, Sandomigran, Anti-depressants etc… eventually the doc gave me Epilim and its finally helped!.. i can now read, walk and watch tiny amounts of TV. this whole saga has being going on for 1 year now. im doing physio rehab twice a week.

i was a singing teacher, i wondered if that had any relationship to the problem with my inner ears.

if anyone has any comments or feedback id love to hear it. has anyone ever been “HEALED” from this shitty problem?? has Epilim “reset” anyone?.. im hoping to get pregnant next year some time but need to be healthy and off Epilim in order to do it.

Michelle


#2

Michelle,

I never heard of epilim but just did a quick search and see it is used to help with epilepsy, just as topomax is. It sounds like it is working for you which is good. As you have probably seen from reading posts here everyone has differents responses to different meds. Some get their life back with the first med they try, others can’t find anything that works and eveything in between. And our symptoms, even though basically the same, vary widely in so many ways.

I really don’t see how there would be a relationship between being a singing teacher and problems with the inner ear unless you had people literally screaming into your ears.

I don’t know if anyone has ever been healed of this in the sense that they no longer need meds and are able to get back to a so-called normal life as they once had. But with permanent diet and lifestyle changes many can move on. I’ve been gluten and dairy free for several months now and am starting to feel better. But, still not sure if it is just co-incidence or some other unknown factor that is helping.

book


#3

Hi Michelle,

My story is some what similar to yours so thought you might like to hear.
I started off as a head-acher for some years now however found that Sandomigran controlled it with no problem. 2 years later I woke up one day with minor MAV symptoms. Quite scary as i was travelling with limited medical care at the time. Lasted about 3 weeks. Next 6 months were as normal until one morning I woke up again exactly the same as before…dizziness, haziness etc… I was still travelling so i decided to fly home. As before, it went away after about 5 weeks until 2 months later again woke up with it except this time MUCH worse. Same story as your self, couldn’t walk, all lights were too bright, noise was too loud, ringing in my ears, constant pulsing and falling sensation, severe stomach pains, frequent emergency room visits. Had every possible test and scan you can think of… each with negative results. Got extremely depressed… I’m young (19 years old) and travelling living the life parties etc to suddenly in bed all day everyday in a dark room not being able to care for my self was a real down mind breaker… as i’m sure your aware of.

First tried Sandomigran with no effect anymore, then topomax, then endep each for months at a time due to my Neuro’s instructions. All with no change.
Finally tried Epilim and after taking just ONE tablet, i felt different. Since then I have improved about 80%. I can go outside now, I can move quickly, I can drive, I can study, I can travel. In so many ways I have my life back.
I have had side effects on Epilim though, first was the headaches came back. My GP threw me on a beta blocker called Derolin (propranolol) and it quickly took care of the headaches again although my head still feels a bit heavy. One of the two drugs have caused a constant slight nausea which is more of an annoyance than a major issue. Sort of like nervous butterflies in your stomach. Bit of weight gain and change in appetite.
I still need my sunglasses most of the time outside but Epilim has literally given me my life back.

The other interesting thing was that I also deal with music on a day-to-day basis as I’m a music producer and am ALWAYS in the studio. Just interested given that your a singing teacher too. It is quite possible that the two are linked because there is suposedly an association between the inner ear and Migraine hence “Vestibular Migraine”.

I’m eager to hear how Epilim has gone for you as I noticed that your post was 6 months ago.
All the best and hang in there!

Bryant.


#4

Hi all,

Thanks for posting your Epilim (sodium valproate) experiences. I’m due to catch up with a specialist again soon and may request this med next. A lady I was working with earlier this year seemed to be doing well on the med as well.

Great to hear it has helped some of you so much.

Scott


#5

Hi guys. I know this is an old post but I’m just wondering how you are both getting on these days? Did the Epilim remain helpful?
I have just started on Epilim (2 weeks) and have noticed mild benefits. I’m keen to give it a good try, but I’m dealing with some heightened anxiety/sensitivity due to a bad reaction with Effexor, and really want to try something else that might help with those symptoms.
I think it’s also making me a bit depressed/lethargic but I’m hoping this will pass.
Thanks for your input!


#6

Michelle (am6erlight). Hi. We are all very eager to hear back from you. Are you still on the valproate? did it help long term? did things improve further for you?
Sorry for all the questions but we are all on a quest to find relief from this hell migrainous vertigo aka mav , vestibular migraine.

I do hope you are well

Regards

Jason