The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Update - a new strategy?


#1

Hey everyone,

I didn’t see any improvement on Verapamil (my 6th preventative tablet), so the neurologist is having me try Aimovig. I suggested to him that since I haven’t had a symptom-free day since this all started 3+ years ago, that I might try a short stint of oral steroids to try and ‘break’ the migraine in the lead up to starting the injections, which he thought was a good idea. Anyone had any experience with this strategy?

I’m also finally going to get an MRI, and am being sent off to test whether I might have POTS alongside the ‘vestibular migraine’.

So, no good news for you guys, but a few ‘leads’ which will hopefully amount to something. I’ll be sure to keep you updated on the aimovig process since many of you are likely to be interested in that.

Best wishes, D x


#2

Hey there, was wondering how you were getting along. Yes, interested in trying Aimovig eventually too, do keep us updated.

Never heard of the oral steroids to break the migraine. But, I have heard of an injection of Sumatriptan + Toradol to break a really long and chronic vestibular migraine. You can read about it here:


#3

I think Vigs @getbetter said he felt better on a steroid. Was that you Vigs?


#4

Interesting! Thanks.

The steroids are called Prednisone and are often given in hospital settings to people who have had migraines lasting 72 hours or more (i.e. 1/365th of the time mine have lasted :wink: )

I just go the call from the drug company and the aimovig is supposed to arrive in ~5 days. Interestingly due to th severity of the migraines they’ve put me straight onto two injections per month at the same cost as one per month. Will let you know how it all goes!

Best, D


#5

i took the 7 day pack once, but it contributed to the bad insomnia I had already going on. Not sure it broke any migraine because I wasnt necessarily in pain, but my neuro uses it for breaking migraines.


#6

Ah ok. Hopefully I have a little more luck with it as I am having daily classical (very painful) migraines along with the constant dizziness)


#7

Yes i went to 100% on prednisone. But if you dont follow migraine lifestyle it will come back.


#8

My GP gave me a short course of pedinsone for an impending sinus issue since I can’t handle sinus medications. I only took half the dose she suggested (I was scared of it, never had taken it before) but had the most normal feeling days I have had in over a year while on prednisone! It was amazing. Love to hear more about how it affects you @d.powell


#9

@Naejohn @GetBetter

Wow sounds like you guys had great success with it! My plan is hopefully to ‘break’ the migraine a little bit and then start the preventative just afterwards to try and prevent relapsing back into it.

Ambitious I know :laughing:


#10

good luck! you will have a rush of energy the first couple of days, that is for sure!


#11

My ENT prescribed high dose prednisone tapered down over a few weeks each time i had a severe attack. I credit it with recovering to a functional state and often wonder if i would be better taking it daily but i guess the long term side affects are bad.

For my worst attack i got much worse after tapering down the prednisone and she had me go back up in dose and taper more slowly.

I would call them menieres attacks but of course this is just a set of symptoms and much of my issue has been diagnosed as MAV. i am in the camp that for many with MAV symptoms it is the vestibular dysfunction that causes the MAV symptoms. For me, the steady state vestibular dysfunction and MAV symptoms get worse on average after each attack so my main goal in life is to minimize the occurance of the big attacks (last big one put me in the hospital for 4 days and i couldn’t walk or drive without assistance for months. Still have issues walking and driving is painful (hurts my brain trying to scan back and forth)

Dave


#12

Thanks for sharing!

Sounds like many people have had a level of success with Prednisone here, which is very encouraging.

Yeah it sounds like one has to weigh the potentially serious side effects against the benefits you get from the steroids, though I believe many do end up taking them long term, esp. for other conditions such as refractory asthma.


#13

Yes I tried that. I felt increasingly well while on the steroids but as soon as I stopped it all came back, weirder than ever.

What did work for me long-term is pizotifen (see The Pizotifen Diaries).

Also I found diclofenac worked really well as a relief treatment (prescription only for oral but here in UK you can buy the gel over the counter) and high-dose aspirin worked quite well (900mg) but ibuprofen less so.

Have you tried triptans? I never have.


#14

Interesting that both non-steroidal anti-inflammatories as well as steroidal anti-inflamateries seem to help!


#15

I’m on Day 4 of the steroids and haven’t had any luck on them so far, unfortunately. No side effects at all though, so perhaps in future I will consider trying again at a higher dose.

Glad to hear Pizotifen gave you good improvement, it’s one of the few preventative tablets which I am still yet to try.

The non-steroidal anti-inflammatories such as aspirin gave me a small amount of abortive relief, perhaps 20% for a few hours, but gave me some stomach problems, and so I switched to Maxalt Triptan Wafers which gives a similar percentage of relief but without the side effects.

The Aimovig is set to arrive shortly so here’s hoping that will be the medication that finally gives me relief.
Best, D


#16

Wishing you good luck with the Aimovig and all the different leads you are following. I and no doubt many others will be keen to know what your experience is, so please do share how things are going for you.


#17

How kind! Thank you very much @Isengara, I’ll be sure to keep the forum updated :slight_smile:


#18

Verapamil did wonders for me got rid of vertigo and Migrane, but I had to find a neurologist that knew how to administer it to get to the bottom of the brain, this is what really made a difference for me 3 tablets a day for 2 months and after 2 tablets a month for 3 months and then 1 tablet a day for maintenance. It changed my life completely! I never thought I could be myself again! Please don’t give up and try it!


#19

administer what ? Nerve blocks ? sorry this part was not clear