Follow up appointment - 1 month on Sodium Valproate

Today I had my latest appointment with the doctors at Zurich Hospital. I advised that the Sodium Valproate has not as yet helped me, its been roughly 5 weeks and am on 900mg per day. Because of this I have been advised to come off the medication in the next few days.

The doctor advised that Sodium Valproate was the strongest Migraine Drug that he would prescribe and believes that if this was Migraine causing this, I would certainly have improved, even if only slightly.

He also advised that he has never seen a case like mine, where all of my tests were clear and the symptoms have persisted for so long.

Ive actually been asked to attend the neurology and balance specialists weekly meeting tomorrow morning, this is where they get all of the top neuros and neuro otologists together to discuss tough cases and hopefully come up with some new ideas…

will update after tomorrow, Rich

Seems odd to me that he’s ready to pack it in because one med didn’t work. (Reminds me of the neurologist I recently dumped who said he was “out of ideas” after he’d tried me on Effexor, Lamictal, Depakote, and Topamax. Out of ideas? Seriously? There are tons more meds to try… Just made me think he was tired of me!) Anyhow… the whole reason there are soooo many different migraine meds out there is because there is no one med that works for all migraineurs. Sounds like he’s just out of sorts because his favorite didn’t work. And, though not an expert, I would think that after a month, if you haven’t showed any sign of improvement, then it’s probably not going to work. From what I’ve read, while it does take weeks for a lot of these meds to work, I wouldn’t think it would just all of a sudden start working after 2 or 3 months. I think you’d be more likely to have a gradual increase in effectiveness over the course of several weeks/months.

That said, I’m glad you will be meeting with the group of docs tomorrow. Hopefully they’ll come up with a good plan - and trial you on a med which might work for you…

Hi there Richy, I’m surprised all round at what you’ve been told. Most of it just isn’t so, as I’m sure you yourself know from simply reading on this forum. Good though that you’re seeing more docs tomorrow - hope they’re a bit more up to speed than the one you saw today. Are they the sort of docs, do you think, who might look favourably on a print out of the ways in which to treat MAV as found on this site? Or would that work against you? Will be interesting to see what they come up with though. Let us know. Good luck tomorrow.

Brenda

Thanks both.

I think I will print that sheet out as you have suggested Brenda.

From what I understand these are some of the top neuros in the country, and people travel from all over the world to see them, so I am surprised that my doc is willing to give up after one med.

I know people say not to keep chasing new expert docs, but if I gain nothing tomorrow I am going to fly back to uk and see dr Surenthiran. He seems to be good with patients and that’s what I need right now, the idea that someone is actually interested in helping me.

Well, here’s the thing. If your doc is treating you for migraine, then yes, giving up after 1 med is, frankly, insanity.

However, it sounds like your doc isn’t convinced that your problem is migraine. So now the question becomes, if he isn’t going to treat you for migraine, what IS he going to treat you for? And if the answer to that is, “nothing at the moment because he has no clue what is wrong with you” then it seems stupid to not try a different migraine medication like Topamax or Nortriptyline at the same time that they are trying to figure out what the hell is wrong with you. Given your migraine history that is.

I find the statement that the fact that you didn’t respond to Sodium Valproate being definitive proof that this isn’t a migraine problem to be really disturbing–that isn’t a statement that I would expect a migraine expert to make. Migraine experts understand that every migraine patient responds to medications differently regardless of the “strength” of the medication and that it sometimes takes many MANY trials to find the right medication to stop the migraines from happening.

But maybe he has a different attack plan. I only know the attack plan for MAV based on how my migraine doc did it.

Hi Richy,

The advice against ‘doctor shopping’ is only when you’ve been given a solid diagnosis after thorough investigation and are being actively treated. In your case it sounds like your doctor isn’t sure that you have migraine so the fact that he is seeking the input of the other neurologists I find refreshingly humble and a good idea. Given that your doctor is also out of ideas on how to treat you, again, a good idea to get other input.

I don’t think it can hurt to print out the information on treatment options. You’ll have to tread carefully so as to not bruise any neuro egos but hopefully it will be well received.

Good luck and keep us posted.

Vic

Hi Richy

Were you on 300mg 3 times a day or 450mg 2 times a day?