Starting with Valproic Acid

Specific Illnesses & Conditions VM/MAV
1

Hi all!
My name is AnnaMarie, I am 46 years old and I am from the Netherlands ( so my English is not perfect, sorry !).
I am very happy that I have found this forum 3 months ago; since then I was able to gather so much information about what is happening in my head ! So thank you very much for that !

In Dec. 2012 I woke up with a sudden hearing loss in one ear, a very loud hum and pressure in the ear. Two days later I had a vertigo attack, nausea, vomitting etc.
GP thought it might be Meniere’s. I tried to recover in the next two months but I stayed dizzy, a bit off balance, and had a continous ringing in both ears, earpressure on and off. In February I had the same kind of attack once again and I had an appointment with an ENT specialist. Hearing tests were o.k. , ENG test showed that my organs of balance were functioning but in a slightly a- symmetrical way.
At the beginning of April ENT specialist suggested Vestibular Migraine and wanted me to trial Propranolol. I had never heard of this form of migraine and I was not ready for this medication ( was afraid my bloodpressure would lower too much, since I have quite low bloodpressure already). Then I found this forum and learned a lot about all these symptoms that can be associated with migraine ! I also bought the book ‘Heal your Headache’ and started with the diet, step by step.

Since I was 15 years old I started having headaches, but they were never recognized as ‘migraine headaches’ : I never had distinct attacks for 24-72 hours, never was nauseous or light sensitive ! My headaches were related to hormonal changes for the biggest part of it, and in the last few years I started having very irregular periods and other menopausal symptoms. So I guess hormones are a big trigger for me !
Since 15 years I have CFS, and have not been able to work or do much physical exercise. So I am used to being partly housebound. But this last 6 or 7 months has been so hard, not being able to do simple things. I can walk outside for max. 20 minutes, but it is not relaxing with this dizzy, weird feeling in my head !

Last week I had an appointment with a neurologist, specialized in vertigo and dizziness, and he confirmed the diagnosis VM being most likely. Although he was not sure about the ear pressure and pain, and the continous ringing as being part of VM. But on this forum I read that these symptoms ARE a part of VM, aren’t they?

So now I started with Valproic Acid 150 mg. since 3 days ,and I am gong to increase it very slowly in the next 6 weeks. I didn’t have any headaches since starting, which is nice, but I am feeling much more drowsy and tired in my head , wow ! And I am only taking 150 mg ! I hope this will subside with time, just have to be very patient I guess. I have always been very anxious about taking medication, but now I feel I have to ‘risk’ it.

It seems that not many people here are taking Valproic Acid, but Topamax ? Why ?

Thanks all, for being here and giving information !
AnnaMarie

2

Hi AnnaMarie

Welcome to this forum. I believe the ear pressure and ringing can be part of VM as it is migraine activity which affects the vestibular system so it can mimic all the symptoms of any other vestibular disorder.

The neurologist who diagnosed my MAV first gave me a list of meds to try starting with a Beta Blocker and then Topamax and then Sodium Valproate. Therefore it is used by neuros for migraine but I think they prefer trying Beta Blockers as they are considered safe and then Topamax, maybe that is just current thinking at the moment.

Good luck and let us know how the Valproic acid goes x

3

Hi Jem, thanks for your response !

The tablets (300 mg) I have contain 200 mg of Sodiumvalproate and 87 mg of Valproic Acid. I am supposed to take a half in the first two weeks, then going up to 1 tablet for two weeks etc. The next appointment with the neurologist is in 9 weeks,so I think he believes it should do something by that time.

In the Netherlands there are no Neuro otologists, so you have to be lucky to find a neurologist who knows about this illness. From what I have read, here doctors prefer betablockers and then they choose Depakote/Valproic Acid, and then they choose Topamax. And I don’t think they put much value on diet as a way to control migraines.

4

Hi Annamarie and welcome also. Sorry you are in all this mess.

I think valproate is used as a first line migraine preventer. It is pretty common use for people who have epilepsy at much higher doses than we are given for VM and there’s a big body of evidence about any problems…

If there’s one thing we are learning is that different meds and approaches (and doses!) work for different people and that hanging in there with trials is normally a good approach. Also neuros have their own preferences a bit too…

I have written about this before (sorry to others) but valproate seems in fashion in my city…our daughter (now 13) has been on Valproate (Epilim) for more than two years for “normal” non-VM migraine prevention and seems to have zero side effects (other than many fewer migraines :smiley: ). When we have been deciding about preventative medication for her, valproate was the “second” preference medication after Propranolol (ie it is regarded as pretty safe). Both medications have worked to substantially reduce her migraines and she has passed essential blood tests (valproate) no problem. Missed pill = migraine. Propranolol was good too but wore off after a couple of years.

It is one thing as an adult popping meds daily and quite another deciding that it’s the right thing to do for an child so you have a pretty solid look at what they want to give her!.With kids too, there is much more emphasis on slowly working up and down with doses. I am one adult guilty of going in a bit hard with the early doses of new meds to beat this rotten plague. Risk is crap side effects and you discard a med that might have helped… :frowning:

Now the first Neuro that diagnosed VM for me in 2010 uses valproate in his “first line” attack and says he has a lot of success. I tried it (in increasing doses) for about 6 months but found for me it only helped a little so moved on to other meds. Fingers crossed for you…Wendy

5

Thanks for your response, Wendy! I am so sorry your child has to go through childhood while dealing with migraine headaches ! And I can understand very well that you as a parent were cautious about the medication . I am glad it worked out well for her, and without side- effects !
Good to hear that this type of medication can be succesful in some people and that it is quite common.
And how are you doing yourself ? Did you find meds that work well enough to control the symptoms ?

As I said I am only on 150 mg. ,for 6 days now, but it is doing something I think: I have no real headaches since I started. I feel pressure on and off during the day, but it doesn’t develop into a headache. And suddenly I am able to sleep without problems, which is rare for me ! I feel more tired during the day, and quite dizzy when moving.

6

Hi Annamarie - thanks for asking. Have pretty much tried the works over 3 yrs - I find it’s a bit fluid but its really worth working at - some things (eg sandomigran) really turned the volume down on pain but the effects eventually wore off. Find that Lyrica improves the vertigo and low level pain a bit - now am having a little break from it can notice the difference. :smiley: