Migraine

Hi yall! My Neuro has been pushing and pushing me to do Botox. I have resisted, and wanted to use it as an absolute last resort. I am really not comfortable with injections, on top of that, I questioned if it would help, especially since my migraines are NOT muscle related, and my neuro hasnt really done that many on hemiplegic migranaurs to know if it helps them or not. Dont get me wrong she is a skilled Dr.Botox. She has clinics every other Thursday. just not many HM patients as far as I can get them to admit.

I finally agreed to try it, with her saying she would give me valium to relax me during the procedure. I have an appt to get it done on May 29th.

But now I see this new research articleHERE and really am doubting it now! I really dont know if I should try botox anyway, or if I should cancel my appt.

2 weeks ago I upped my Depakote and it helped tremendously. I went from daily migraines for over a month to about 3 a week. The severity of them went way down too. That too is factoring in my hesitancy to do the botox. I dont feel its last resort yet, but she does. Despite the fact there are several meds we havnt tried, and things like bio-feedback I would like to try first. But she is so big on Botox...

Anyway I just dont know if I am using this as an excuse, or if it really shows that Botox doesnt help migranaurs whose triggers arent muscular. I dont know maybe if she says Botox is her last resort, and it doesnt work, THEN what? hopeless feeling! comments anyone?

Tawsha

I'd encourage anyone to take their doctor's recommendations seriously, and consider them. On the other hand, I don't think you should get pressured into a type of treatment you don't feel comfortable with. It's not necessary for you to have an "excuse." If she's saying the Botox is your last option, I think you've been around the forum long enough to know that it's simply not true. Either you or your doctor should be free to suggest treatments at any time, but the two of you both need to be comfortable before you proceed.

I had botox beginning in 1999. They were Extremely effective, and would decrease my headaches slowly after each series until I would have about 1&1/2 months completely headache-free. Then the migraines would slowly increase in frequency until it was time for new botox injections. The injections really aren't that bad either, just mildly uncomfortable for a few hours. In 2001 I had plastic surgery and along with that we tried an elective procedure which was thought to work against migraines like botox. I did have about 9 months headache-free, but they did come back. After this the botox no longer worked because the main nerves it works on in the forehead had been destroyed.

But I AM a botox believer.

Tracie

Thanks for the input nutcracker and Tracie!

I probably should also have mentioned that we already tried nerve blocks, and that made the migraines MUCH worse afterward. That is another reason I am bit concerned about Botox. Though I know its different stuff, it still is dealing with muscles and nerves, and mine dont like to be messed with apperently!

Nutcracker, you are right,and unfortunatly I dont have that type of relationship with my neurologest. Its her way mostly, despite my protests. Finally I would just stop taking a med I knew my body wasnt handling,or making my migraines worse.. and she would act like I was a bad patient... I know I need to find a new one, but she is the 4th one with kaiser permenente, and pretty much all I have left that my insurance will cover. Trying to go to one outside my insurance is not a financial option, at least while raising the 4 boys!

Tracie, Its encouraging to hear from someone who has been there and had sucess! Perhaps I should give it a go, and at least try it. Thanks for your input!


Tawsha

They didn't even consider that a nerve block would do me any good. Of course, you didn't hear much about nerve blocks at that time. I do want to assure you that the injections are not nearly so bad as you're probably thinking. My first time, DH had to go and hold my hand, and I was scared to death. The injections themselves don't hurt, the amount of botox they put in is 0.5ml and the large amount is the most uncomfortable part of it. It made my face kinda uncomfortable feeling for a few hours afterward.

tracie

Your current doc reminds me a bit of my fired doc, who is also quite dedicated to Botox.

Let me ask you this - will your insurance cover the Botox? If you continue to refuse the Botox, will that make your relationship with your doctor worse?

I know you're in a difficult situation, since you're stuck with a less than ideal doc. (I don't know what happened to our frying pan icon, but I know who I would use it for!) Here are my thoughts. My fired doc basically moved me to her "B-list" of patients once my insurance denied the Botox authorization and we had to go to other treatment options. She likes to give Botox to everyone, and if it doesn't work out for you, you get shuffled to the bottom of the pile. As soon as she found out my insurance said NO WAY and I asked about other treatment options, she became *much* less willing to work with me, and I ended up firing her.

In an ideal world, you would stick to your guns, say no to the Botox and move on to another doctor. But this isn't an ideal world and definitely not an ideal situation.

I'm wondering that if you continue to say no to the Botox, if your doc is going to become even *less* willing to treat you. She's already pretty useless, yes, we all know that. But we don't want an even *more* useless doctor treating you if you're stuck with her!

You could always give the Botox a try, and if it doesn't work, explore your options from there. Botox has been somewhat successful, at least anecdotally, for treating migraine. None of us can really tell you how it will work for you (including your doc) unless you try it. One thing to keep in mind, though, is that Botox sometimes doesn't work with the first treatment, so you may have to give it two or three treatments to give it a fair trial.

On the other hand, if you really don't feel comfortable trying it, don't. Stick to your guns. The thing about a lot of doctors is they are very gung-ho on their area of interest or research and don't give much thought to other treatments. Unfortunately for us migraineurs, one size definitely does not fit all, so regardless of what a doc's particular area of interest is, it won't work for everyone.

One other thing to consider. If this really is your doc's last idea, and it doesn't work, would your insurance let you go out of network? I don't want to give you any false hope, but is that a possibility?

In the end, I'm not that devastated I didn't get to try the Botox yet. I feel like I have other options still left to me before I do that.

All of us get really desperate at times to just find something that will work. Don't let that desperation push you to do something you really don't feel comfortable doing.

MJ you gave me a lot to think about. First off its Keiser Permenente insurance. The Dr works for them if that makes sense. So yes the Botox is covered.

We already tried to get out of network approval. I got denied the Migraine specialest I wanted, but they sent me to one of thier "outside keiser contracted Drs." He too is a "migraine specialest" just like my Neurologest. Yes she is my insurance companies BEST "migraine specialest" That is her nitch. thats what she is trained to do...

Anyway this outside referral of their choice I was allowed 1 consult ONLY appointment. He couldnt diagnose or treat me. They denied my appeal also.

Tee hee I got a giggle out of the missing frying pan comment though! HMM where IS that lil bugger?

I do know if I try the Botox that I probably need to give it a few trys. I have a bit of an issue with WHAT the botox is, and what its made out of! I cant get past putting something like that injected in me! Its bad enough putting the chemicals from all the darn meds in my body!

If it doesnt work, Im not sure WHAT my insurance Co will do. I probably will still have to keep working with her.

Oh hey I got an Idea! MJ you can come down here and stand in for me and YOU get my botox injections! you want it and got denied, I dont want it and not given much choice, and Im approved! Teee HEEEE

Tracie, I am really bad with needles, well actually not as much the needles as the burn of the medicine going in! The nerve block was SO incrediblly painful! It hurts to eeven wash or brush my hair, so any needle around there.. YIKES. I know she is planning on injecting 10 to 20 different places around the head. at least thats what she says she normally does.

But even with my hesitancy, and others who have tried it with success, I still find that article VERY interesting! The impression I have been getting from my doc and others is that they were expecting research on Botox for migraines to be helpful! But this article I put a link to says otherwise.

anyway TY all for the support!

Tawsha

I didn't get to the forum yesterday, so I'm a little late, but I wanted to chime in.

I've been getting Botox for 3 or 4 years. My neurologist doesn't do it; I go to a plastic surgeon. It's not a cure, but it helps in my total migraine strategy. He sometimes does the "migraine" injections in my forehead, but I don't think they do much good.

But he's diagnosed me with "cervical dystonia," which the article said was a good candidate for Botox. The muscles in my neck and shoulders spasm chronically, and they pull my neck out of alignment. I've had no problem at all getting insurance to cover my Botox. They just don't pay much, and Dr. Botox doesn't take insurance. It's ridiculously expensive.

I get a LOT of Botox. The last time, I think it was 300 units. I think the usual amount for migraine is 50. Many injections. I've been having a lot of cramping in my scalp, and he injected there. I haven't had problems there since then. He also injects the base of my skull, my neck, and into my shoulders.

For me, the Botox doesn't sting going in. The needle is tiny, so there's no pain from the needle. Again, for me. Every once in a while (once or twice), there's a little pain in the muscle, but it's brief. And the doc says "stick" before every injection.

My muscles spasm so hard that they've formed calcium crystals, and the doc usually has to change needles because the first one gets dull.

I go every three months. I can tell from my frequency and severity when it's time for Botox. I improve noticeably after a round of Botox.

At my first appointment, my doc told me that the good thing about Botox is if it gives you a problem, it wears off in about 3 months. The bad thing about Botox is that it wears off in about 3 months.

I sometimes feel a bit rotten the day after a treatment. A little flu-like. And a migraine that next day, sometimes. But I start gradually feeling better right after that.

Given my experience, I'd recommend you try it, especially if your insurance covers it.

Gretchen in Mississippi