Migraine

I know you can't give medical advice here,
I'm looking for experienced based opinions.

I have chronic daily migraine, and have had migraines for 18 years. I've been using the 'My Migraine Connection' list, 'Headache and Migraine Preventatives: It's Impossible to Have Tried Everything!'. I have a neurology appointment coming up next week, we've tried well over 20+ preventatives together and have hit on between 1-5 from every category (excluding dietary supplements, I've tried all).

My question is how do you make an educated guess on which one to try next? Are there any specific medication related questions I should be asking myself or my MD?

Depakote & Zonegran (current) have been my most hopeful meds, but they've only reduced the pain intensity, not migraine frequency. Should I add one to two drugs to them (tried multiples in the past), should I stay in the "Nueronal Stabilizing Agents" category (have also tried Neurontin, Lyrica, & Topomax)??? None of the other categories have helped me as a daily preventative, except the muscle relaxer-Flexeril which only takes the edge off.

I'll also be looking at some further diagnostics, such as doing a sleep-study & getting current bloodwork.

Anything else I'm missing? All thoughts & opinions are appreciated! Thanks

I know it seems like you've tried a lot of preventives, but don't discount one class of drugs because one or two didn't work.

If you're using our list of preventive drugs, you know there are many more to choose from. I can imagine trying to find the right one is very frustrating, but many here have done that and are doing well.

A sleep study probably is a good idea.

I was in your same situation CrazyBrain. The neurologist had written me off & said I had no other options. I tried one more drug (Topamax) and that was devastating, in addition to doing nothing to control my migraines -- I got more!

I had been prescribed Naprosyn as an abortive. I did some research & found that there has been success using it as a preventive instead. I have been migraine free for 12 days .... that hasn't happened for over 10 years!

See the link below .... Maybe bring a copy with you to your Neuro ...

http://www.neurology.org/cgi/content/abstract/35/9/1304

Unfortunately, there's no real way to tell what's going to work other than just trying them out. And just because all the meds you've tried in a particular class of meds haven't worked, doesn't mean none will work. It's incredibly frustrating. (I'm right there with you - I also have CDH and have yet to find my magic combo of preventives, though I've only tried 6.)

The only other thing I would suggest - have you tried any complementary therapies, lifestyle changes, alternative treatments, nerve blocks, Botox, that sort of thing? I'm guessing since you've been at this a while you've tried a lot but I'll ask anyway.

I completely feel for you. I do hope you find something soon.

I am with MaxJerz, you have to attack this from all the angles. You never know, maybe you'll try a few suplements and lifestyle changes and that is what you will need to make a preventive work.

CrazyBrain: I wish you the best. I've was very discouraged recently - so much so that I felt I had to do EVERYTHING in my power to try and decrease my migraines. I've not had much luck with preventative medications, so I just attacked my migrianes from several different areas. I read about triggers and thresholds, showing how getting a headache depends on how many triggers are present as well as how high your threshold is. I think I've found something in this information that is helping me reduce my migraines. I agree with what Eva wrote, since I seem to have experienced success that way.

Jan: I'm really glad that Naprosyn works for you. I tried using it as a preventative but I retained a whole lot of water. It may have helped me too, but my jeans were even getting hard to get into , so I quit taking it.

Blessings,

Sandi

CrazyBrain,
The good thing you have going for you is a doctor who is not giving up. A sleep study is a great idea. Write down your questions and go through them with your neuro. I remember a post from Nancy B. about abortive,she thought she had tried them all and tried the last one, it worked, so you just don't know when the right one will turn up.

I would suggest adding to the list of questions:
-What supplements to consider and why (magnismium and B2 seem to come up alot)
-Are their dietary changes the neuro wants you to try?
-You mentioned 2 medications that seemed to start working, could those dosages be upped or were they maxed out?
-Would your neurlogist like a second opinion from someone who specializes in HA/Migraines?

I think my neurlogist favors anti-seizure meds as most of her patients are seizure patients and so she has the most experience with them. But other than that, I don't know what drives her to her choices. I've been willing to go with her choices at this point.

Hope you find this helpful. Good luck.

Cindy

Wow! You've really been through the mill!

I've been on many combinations, some useful, some not. I wouldn't know about taking two anticonvulsants at the same time.

Have you tried any of the antipsychotics? I took Zyprexa for a couple of years, in combination with Nardil and something else. I'm blanking out on it. Zyprexa is BAD to make you gain weight, and I gained a LOT. But the Zyprexa helped. I felt so good on that combination that I was planning on going back to work. It's a long story why, but I stopped the Zyprexa for a month, and everything fell apart. I haven't found the right combination yet.

I'm currently taking Moban, another antipsychotic. My psychiatrist put me on it. (I also have Major Depression.) He said it helped people "consolidate their thoughts." I'm not sure about that, but I take it, along with Ambien, for sleep.

Geodon, another antipsychotic, is getting some press for pain prevention. It's got a great weight gain profile.

Currently, I'm taking Cymbalta and Wellbutrin, antidepressants that are doing dual duty. Lamictal, an anticonvulsant. Moban and Ambien. I'm seeing a new specialist, and I'm increasing dosage slowly on Lyrica. I'm beginning to have appetite problems with it. And I've just started a small dose of verapamil, to try to prevent the headache I wake up with almost every morning. I also take Prevacid for GERD and Avapro for blood pressure.

The specialist switched me from Effexor to Cymbalta, with my psychiatrist's permission. Effexor did a great job on my head when I started it, and it did even better when I increased the dose to the max recommended 225mg. But I developed a horrible tremor and had to back the dosage down to 75mg. It was good for my depression, but I'm not sure that it was contributing to my headache prevention.

Don't give up. If you do, the migraines have won. My uninformed recommendation would be to ask your doctor about taking a combination of meds from different classes. I'm currently taking two antidepressants, an antipsychotic, an anticonvulsant, a calcium-channel blocker blood pressure med (verapamil), Lyrica (I'm not sure how it's classified, but it's approved as an anticonvulsant, among other stuff), and Ambien. The specialist wants me to stay on the Moban and Ambien to preserve my sleep pattern.

Good luck with the sleep study. My DH had one. Turns out he had 70 interruptions an hour. The CPAP has given him his life back. He doesn't have migraines, but his arthritis is better, he's back to thinking clearly, and his depression is much better. He's actually got energy again.

Hang in there!

Gretchen in Mississippi

Wow, so many thoughtful, & thought-provoking answers. I will consider them all, thank you to everyone, really.

Sounds like there really is no rhyme or reason to this process, no formula that neurologists use.

My neuro is also a headache specialist, so that's at least one positive.

Yes, my lifestyle seems to revolve around migraines, as I'm sure most of you can relate. Avoid all triggers, get enough sleep (but not too much!), don't eat certain foods (but do eat others), exercise every day (in the form of running for me), take all your supplements (B2, B-complex, magnesium, feverfew, 5-HTP, healthy fats/COQ10, NO butterbur--it makes me puke! And why do I take all these things? I have no idea, since they really don't seem to help me at all). Then there's the unavoidable triggers such as flashing/bright lights, smells, ETC It doesn't really seem to matter what I do, I still end up with a migraine of varying intensity every day.

I'll definitely look further into some of these specific medication suggestions, and will consider going back to a multiple med profile--the down side meaning multiple med side effects again, which for me gets really complicated as to which med is causing what with my sensitive system, yuck. (and yeah, I totally agree, the weight gain #### !!)

The two meds that temporarily worked for me (Depakote & Zonegran--decreased pain intensity only), I both maxed out on, and they quit helping.

So here I go again...I'll check back here after my appointment, should be interesting. Thanks again everyone!

Edited by moderator: Please remember to stick to family friendly language.

OT: Didn't know that was a "bad" word, sorry.