Migraine

I saw Dr. Robbins (formerly of Diamond Headache Clinic) at his office in Northbrook, IL on Thursday. He is great - - I REALLY Like him! (Teri, I said "hi" to him for you too.) He said the herb butterbur is the #1 migraine preventive in Germany and is used often in other parts of Europe and Japan. I just ordered some online. Works out to be about $27/month.

Especially because of my seasonal affective disorder, he wants me to take 2000 units of Vitamin D3 per day TOO. He said people in the northern hempisphere don't get enough sunlight.

He's got me titrating up to 100 mg topamax too (which is what I figured). He approves of my sleep aid (ambien or lorazepam) because I know I grind my teeth at night (per dentist), and he said the grinding could be contributing to headaches. I do have a mouth guard but never wear it because it's extremely uncomfortable.

He stressed the importance of exercise, and he thinks I should consider yoga, also botox. I've taken yoga before and may do so again. The botox is $380 - $490 per treatment. Not sure if my insurance would cover that. For the 55-60% of people he said botox helps, the effect apparently lasts for 4 - 6 mos. Hmmmmmm . . . . It may be worth a try.

Anyway, well worth the 3-hour drive. Next appt is a 10-minute phone consult in a month.

It sounds like you had a very productive visit! Great job!

You've probably already seen this article, but just in case you haven't:

Topamax Profile

Good luck with the increase in the Topamax and the addition of the supplements. Please come back and let us know how you're doing, okay?

Take care,

I'm glad it went so well and the Dr. Robbins seems like a good fit for you. I'm wishing you all kinds of !

Thanks, Laura and Dragondrool. Will be sure to check in. :-)

Porquipine,
I was searching for Vivactil on this site and saw some of your older posts saying you had a hard time on it. I assume you did not continue with it? I just started taking it.

I then laughed when I read your post here since I grew up in Northbrook, IL. I am still in the Chicago area and going to DHC for treatment. Really just wanted to say hi and good luck on your new treatment!

lisa

Hi Lisa, no, I'm not taking vivactil anymore. Hope it helps you, and good luck at Diamond in general!

I really think I'm going to give botox for my CDH a whirl. I've been in a long cycle here, and I'm pretty tired of it.

Take care,
Beth

Hey Beth,
Was just wondering if you started the Butterbur and have you seen any improvement yet? And what did you decide on the Botox?

Take care,
lisa

Hi Lisa, yes, I started butterbur several weeks ago. Overall, I've seen definite improvement with my CDH, although I still have this lingering, nagging neck/shoulder pain. I can't say for sure what the improvement can be attributed to: butterbur? topamax? nortriptyline? all?

I also still struggle with menstrual migraine/headache. In fact, today I've got a terrible PMS headache - - vicodin doesn't even really mask the pain. :-( Dr. Robbins prescribed ponstel as a menstrual migraine preventive for me last week, as well as MigraTen on an as needed basis. The MigraTen does help with the pain for a couple of hours (it's a caffeine/aceteminophin combo).

At any rate, ironically, I just scheduled a botox treatment for next Thursday a.m. with Dr. Robbins. I've never had one before so I'm a little anxious about it. I'm hoping it might help ease my neck/shoulder pain?

How was the Diamond Clinic?

I just started the butterbur. The capsules taste amazingly awful and it seems to give me heartburn if I don't take it after a full meal. But if those are the only side effects i have to deal with---I'm going to stick with it for a while and see if it helps.

Hi there. I am new. I have CDH since 2006. I've tried a lot of different things. Botox worked for me for a while, but I developed a resistance to it. Your insurance may pay for it if the doctor uses a diagnosis code for "muscle spasm." Mine did and they scowl at everything. Maybe they need some Botox, too!

Paging Porcupine...just wondering how the Botox worked for you and if you are still pleased with Dr Robbins?

lisa

I did both botox and butterbur. Botox made my migraines worse and butterbur nearly gave me an ulcer unfortunately.

Jackie