Started with sodium valproate

Hi all!
My name is AnnaMarie, I am 46 years old and I am from the Netherlands ( so my English is not perfect, sorry !).
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 !

3 weeks ago 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 (tinnitus) as being part of VM.

I started with Sodiumvalproate (slow release) 17 days ago, since 3 days I take 300 mg. and I will increase very slowly in the next few weeks. Since starting I only had one severe headache (lasted 24 hours) which is a relief ! And I sleep better than I did before ( have serious sleeping problems , was using medication quite often) !
But I also notice that I am loosing much more hair than normal when I take a shower; I didn’t think this side effect would kick in so soon !
And I feel more hungry during the day, but I don’t give in to it .

It seems that not many people here are taking Valproic Acid . Why is Topamax more popular?

Thanks all, for being here and giving information !
AnnaMarie

Two weeks since my first post here so I thought I might give a short update, for those who are interested in the effects of this drug.
I increased the dose 3 days ago up to 450 mg. and notice that I am , again, much more tired during the day, but last time I upped this effect decreased after a week or so. I am still losing more hair and the huge increase in appetite is sometimes quite hard. I don’t eat more but this lingering feeling is not very funny ! I am also a bit nauseous at times .

In total I am on medication 4 1/2 weeks now, but I think only now I am starting to reach a therapeutic dose. Unfortunately I am having a headache since 5 days, not severe but moderate. And it started when I got my period, it is what I am used to. I Am more dizzy since then too. But… I think gradually I seem a little less sound sensitive, a little less light sensitive, and I guess the headache could have been much worse !

I don’t know how much time I should give this trial before I evaluate the effects, and consider the pros and cons . Three months or more ?

Ok. Here is another update , after 9 weeks on Sodiumvalproate (aka Depakote aka Divalproex…). I am on 600 mg. now and to be honest I am not very happy with it.
The hair loss has increased tremendously ,it is very thin now . Still a very hungry feeling all day long; I have started eating a bit more in between meals. No weightgain. The worst side effect is feeling very very tired, my body is so heavy ! I have CFS, so I know what it is like to deal with chronic fatigue, but this extra tiredness is different and very hard. I am housebound and have no energy to do much.

So , is it working then? Well, I have had less headaches in the last 2 months; about 20 days in total. Before I took medication I had about 30 - 35 days with moderate to severe headaches. So that’s an improvement. I don’t notice any change in the feeling of dizziness however. I am still unable to go to a shop without feeling terrible, I can’t sit in a car that is driving normal/fast. Lightsensitivity hasn’t changed yet.

Tomorrow I will see the neurologist again, and I think he will suggest to increase the dose, but I am not sure if I am willing to do so. Will the side effects subside over time, that’s the question. I know I am sensitive to medication, because of the CFS, so I don’t feel too confident to try somthing else.

Hi AnnaMarie
This sounds truly terrible, you may have to get a collection of hats for your
poor bald head! :slight_smile: How long have you had the CFS? It must be hard to know what is a symptom and what is a side-effect.
I don’t get severe headaches, but it is always transforming, I think I’m getting better until I get worse, again
I can’t really see any pattern to it.

Final update on my Sodiumvalproate trial. I used it for 9 weeks, then went back tot the neurologist. He said to stop , because the hairloss was too much, (and in some patients the hair didn’t grow back ). He also said that this side effect would not subside over time, so this medication is not the right one for me.
He suggested to start wit betablockers or with topamax, but I don’t feel ready for that yet. So I take a break from medicationtrials.

I just have a question to whether you took the whole dose at night or had it broken up morning and night? Im not wanting to titrate up but wont be able to cope with taking meds in the morning im only on 200mg but want to go up to 400mg.

Hi Becky, sorry I didn’t reply before, but I just read your post.
I had 300mg tablet ( slow release) and firstly I took 150 mg at night for two weeks. Then I took 150 mg in the morning and 150 mg at night, for another two weeks.
Next step : 150 mg. in the morning, 300 mg. at night, stayed on it for 3 weeks. Last step : 300 mg in the morning and 300 mg. at night.

When your tablets are slow release, I think it is no problem to take 400 mg at night. I am not sure if you could do that with the ‘normal’ tablets. Ask your doc.
On PubMed I found scientific research about the efficacy of Sodiumvalproate in migrainepatients. And the conclusion was that a dose of 500-600 mg. of Sodiumvalproate was the most effective dose for treating migraines, My neurologist said that my dose (600 mg) was actually still quite low.