Migraine

Hi Terry,

Do you know, or have you ever heard, of anyone benefitting from a VERY low dose of Topamax? I'm talking about 1/4 of a 25 mg pill per day.

Thanks for your time.

~Sandi~

Hi, Sandy,

No, I haven't heard of someone benefitting from a dosage that low, BUT that doesn't mean it can't happen. I have known people to benefit from dosages as low as 25 mg/day, and in the clinical trials, they documented some who did well at 50 mg/day.

Are you asking for yourself? If so, please tell us more.

Thanks for your response, Teri. Make sure you have a few minutes before you begin reading this, because it is quite long.

My situation is probably not common, and I might appear a little bit crazy, for sure (but that's not always bad, is it?)

OK... let me try to put this, into words, so that it'll be easy to read. I'll just bullet my paragraphs to make it simpler.

1. I moved to Tennessee from Arizona in October 2005. I've been a migraineur for 20 years and while in Arizona I never saw a headache specialist... only my PCP (primary care physician). I've used Imitrex since the mid 90's and had tried amitryptyline and verapramil, on the advice from my PCP, but the side effects were intolerable and they never did help with my migraines. So I just used Imitrex and sometimes used Butalbital (which I ended up getting addicted to). I eventually stopped using the Butalbital all together.

2. After moving to Tennessee I located a neurologist who is a headache specialist (Dr. Constance Johnson) and was excited to get started in hopes that she might be able to help me better control my migraines. She was very impressed with Topamax and so I took her advice and tried it. However, she was also in the midst of "Botox for Migraine" trials and I was very interested in participating in this. One of the requirements to be in the study, however, was that you could not be on any preventative medications. So, I quit taking the Topamax. I don't even remember if it had helped at all. I was just so excited about being accepted into this study. Unfortunately, I never did find the Botox to help me like I'd hoped, so after the 15 month study was over, I tried Topamax again.

3. The 1st night I took it (25 mg) I woke up like every hour on the hour. The next night I couldn't really sleep either, and I also had some creepy dreams. I decided I didn't want to see what a 3rd night had in store, so I just didn't take it again. I continued to use Imitrex and was also prescribed Lortab as a rescue medication. In the past, whenever Imitrex didn't cut it, I'd responded well to a Toradol/Phenergan cocktail. But since that takes a doctor or ER visit, I just kept Lortab on hand should I need it. Anyway, when my migraines began occurring more frequently, Dr. J wanted me to try something else. Now I would try Metropolol. It lowered my (already low) blood pressure and I was in a fog all the time, so I discontinued it. Dr. Johnson mentioned a couple of other drugs, but I was too afraid to try Depakote and didn't know enough about one of the other ones she mentioned, so I refused. She wasn't happy with me. She told me that at some point I'd have to choose what I'd rather live with - migraines or side effects from a preventative.

4. My migraines got worse and I decided to try Topomax again (I did this on my own). This is the "crazy" part I mentioned in the beginning of my post. Call it crazy or just hard headed, but for some reason I just really wanted the Topamax to work. Probably because I'd heard good things about it AND because I've had a weight problem all my life (it supposedly helps with weight loss, as you know). I know, I know... that's NOT a good reason to keep taking a medication that you have problems with. But I want to be honest, here.

5. I began taking Topamax again the 1st week in January. But this time I decided to titrate up VERY slowly. I cut the tablets into 4 pieces and started with 1/4 of a 25 mg tablet. I took that for 1 week and did ok. The next week I took 1/2 of a 25 mg tablet. So far, so good. The 3rd week I went up to 3/4 of a 25 mg tablet. So now I start to notice that I'm getting very irritable. OK... so I've certainly been irritable before, and I didn't pay a whole lot of attention to it. But then the depression set in. Just within a week's time I went from being irritable, to feeling like my life didn't even matter anymore. Yeah... pretty intense. I didn't know what was going on. Then I found an article that said a study had been done and it was proven that (I think) 9 (or maybe 11) specific anti-seizure medications could cause suicidal thoughts and other problems in certain people. Could that be it, I wondered? I stopped taking it immediately, and you know, my depression lifted the very next day. However, it seemed as though the Topamax was helping (finally), so I was very distraught when I had to quit taking it. I felt like a dog chasing my tail. If I take Topamax my migraines decrease but I experience depression. If I don't take it I have more migraines and I experience depressive episodes (you know - the kind when you feel hopeless and helpless). True... migraines hurt really, really bad and they are debilitating, but having suicidal ideation is WORSE. I would just have to try something else.

6. I email my neuro's office and tell the Physician Assistant (who I've actually been seeing instead of Dr. J for a while now) about what happened, as well as the fact that I needed a prior auth for MORE Imitrex than my insurance was providing. I used to get 18 a month and then this year (they say due to something the FDA put out about triptans), my insurance company would only pay for 12 a month. Well HELLO... I'm using more than this. Needless to say, I got very scared. The PA told me to definitely quit the Topamax and she would try to get more Imitrex approved for me. Well this went on and on and on. My PA did give me samples when I ran out of Imitrex, but it took a month to get it all straightened out. A month can seem like FOREVER when you are in fear that at some point you might get a migraine, but you might not have the medication that works. It's so sad that we sometimes plan our lives around "might" or "might nots", but it's a cold hard fact for some of us, as you know.

7. In the mean time I began to get VERY proactive in my treatment regimen (funny how fear can sometimes fuel your resolve). It was finally the last straw for me, and after doing lots of research I was sure I was in rebound from medication overuse (I also use Excedrin). All of this also prompted me to seek advice from a therapist. After reading new information and after seeing her (she suggested that I stop taking the Lortab immediately), I stopped the Lortab and removed ALL known migraine triggers. I was so desperate to get better. The therapy helped me a LOT and my stress started to decrease. But... my migraines did not. I was doing everything I could think of, but was still having migraines almost every day. After I read that preventatives didn't work if you were having MOH, I stopped taking medication for as long as and as much as I could stand it, and started (you guessed it) Topamax again. I'd been using it from the same sample bottle my neuro gave me in early January. THIS time, I thought that maybe since I'd stopped using Lortab all together, that just maybe I wouldn't have side effects like I'd had before. I also justified using it by promising myself NOT to take more than 1/4 of a 25 mg tablet AND that if I began to feel even the least bit depressed, I'd stop taking it.

OK... so I don't recommend that anyone try this at home. I took the Topamax from 3/3/08 up until a week ago and didn't have any side effects at all. But voilà... since making many changes (discontinuing birth control being one of them), my migraines have gone from 6 a week, to 3 a week, to 1 a week. WOW, WOW, WOW. So now that I am experiencing such an awesome turn around, and since I was taking such a small amount of Topamax, I decided to see if all my other changes would continue to keep my migraines down to a minimum and I stopped taking the Topamax. I know, I know... your head is probably spinning and I know I don't sound like the sharpest tool in the shed, but it's amazing what one will do when one is desperate to get better.

So that's just one of my many stories. I am curious to know what you think about such a small dosage.

Note: Since I began writing this post earlier this morning, I've been to my neurologist's office for a follow up appointment that I'd scheduled back in January. This time, I would see Dr. Johnson instead of the PA, since I'd been having so many problems. Only this time, I was armed with detailed diary information that I began keeping some time ago. She was very impressed. The last time I saw her she was not very happy with me. DOH. Anyway, we decided that since my migraines have decreased so much, and since I'd already stopped the Topamax (again) a week ago, that if I began to experience an increase in migraines again, that I would NOT take Topamax again. I'm cool with that. Especially since she has now recommended an herbal supplement (Petadolex) that she says has been working GREAT for many of her patients. WOW... that's such good news. She gave me some samples and told me to use that instead of the Topamax. I am also going to look into Biofeedback and she said she would work with me to try and get my insurance company to pay for it if I found someone who was directly working with it to treat migraines. So now I'm on to research that. It seems like research is ALL I do in my spare time, but it's worth it. My husband calls me www.girl. Ha Ha.

I LOVE this site and I appreciate all the hard work that everyone involved does. It's been such a blessing to find you.

Sincerely,

Sandi Miller

*you might think twice about asking me to explain something again*