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RE: Botox Treatment for Migraines
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meaningfulc1952 posted:
I have had migraine headaches all of my adult life and have taken valium, phenergan and fioricent w/codeine for the pain and also sumatriptan especially when the migraine is so severe. Recently I started getting botox treatments in my neck and shoulder areas to try and get more relief of these headaches. My neurologist is going to increase the amount of botox this next time that I get the botox next week. Does anyone that has migraines get botox treatments? If so, how do you think it works for you. I would really appreciate any info about this. I also have total jaw joint replacement bilaterally and that does cause my headaches. In the late 1970's I had TMJ and then the oral surgeon I saw said that I needed to have total jaw joint replacement. After seeing 7 different oral surgeons I decided to have the surgery. Back then these drs. were putting in the Vitek jaw implants. If anyone knows about these I would appreciate hearing from you. There were only about 26,000 patients that received the Vitek implants. The FDA recalled them in 1990 or 1991. I had my Vitek jaw implants surgically removed and gave them to the FDA and they sent them to Washington to have them analyzed by the orthopedic department in the Department of Defense. I am not kidding either. I have the letter from the dr. that took a year to analyze my explanted implants. These Vitek implants are/were very dangerous to any person that had them. They caused a foreign body reaction to the patients that had them. Now I have the all metal Christensen jaw implants bilaterally and I know that they are loose. I am also a chronic pain patient due to the pain in my jaw and neck and the headaches.
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itmatsb responded:
YES, Botox injections helped my migraines a lot. The first treatment (100 units) didn't give me any relief. The next time he gave me 200 units and later he increased it to 225 units. The increases did give me significant relief. They can last anytime up to 3 months, but I need mine every 10 weeks. So keep with it. Also continued injections are supposed to increase the pain relief. Find out for me what dose he is giving you. And keep with it.

Also with the pain in your neck, that means that nerve block injections could also help you a lot. Has anyone suggested them to you? They really helped me too.

What also helped me was physical therapy to loosen my neck, shoulders and back. Also some other physical therapy was done with my jaw, that also helped me.

Assuming that you are also being given medication help?

So sorry to hear about the jaw implants. How terrible and the doctor is probably long gone to even tell him.

Let me know if you can get the nerve block injections, the physical therapy and whether the Botox injections help you.

I'm going to be really interested to hear back from you.

Sara
 
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Swimgirl57 replied to itmatsb's response:
Sara, I am very interested in the botox injections. I've been reading how a few doctors will see if the injections work for you, then they take it a step further and remove the muscles where the triggers are. i see a Neurologist and he's got me on an anti-depressant and I think it's working a little bit. But I would love to try to see if Botox works for me, but I can't afford it. Can you tell me how much it initially costs, etc. I'm in the Sacramento area, so if you know a doc in that area that treats botox for migraine, please let me know. Thanks!
 
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itmatsb replied to Swimgirl57's response:
To Swimgirl57,
They will remove the muscles??!! I don't think that sounds like a good idea. Don't do it.

Do you have insurance? My insurance does cover the Botox injections, but I had to have the State Insurance Commission review my request for it to be covered. It costs a LOT if I totally get them at the University--about $8,000. The cheaper way when my insurance would not cover it before the FDA approved it for migraines, was to buy the Botox serum at the pharmacy (by prescription and keep it frozen), then the doctor visit was less than $300, but the Botox costs over $1,000 depending on the dose. At least that is the way at the University of MI and unfortunately I have no idea about anyone in CA. So sorry.

What about nerve block injections? And what about a further daily prophylactic medication that would prevent the headaches? The anti-depressant is a start, but it sounds like you need more.

Good luck.

Sara
 
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meaningfulc1952 replied to itmatsb's response:
Hi itmatsb:
Thank-you for your info. I have only had the botox treatment once, but tomorrow I am going to have a stronger botox treatment. The first time I had botox my neck swelled up and the pain was awful. I couldn't believe how bad the pain was until the day after the injections. The first day that I had them I felt no pain at all. That was a wonderful day for sure.

Yes, I have tried physical therapy over the years ever since the 70's and usually have not had much relief at all. I do have 3 and more disks in my neck and back that are a real mess. I did talk to a neurosurgeon about having neck surgery. He told me that he did not recommend me having it.

I have had one occupital nerve block and it was a pain management dr. that did that. Unfortunately, the outcome was real bad. I would never consider having any more nerve blocks, or any kind of injections in my neck because the pain was so extremely bad when I had the occipital nerve block some years ago.

I do take meds for my migraines and chronic pain in my jaw and neck. They have been a life saver for me. I just wish that my pain mgt. dr. would up the dose of methadone that he prescribes. Two years ago I had a great pain dr. and he prescribed more of the methadone and meds for breakthru pain. Unfortunately he died and I had to look for a new pain mgt. dr.
Thanks for the info. I sure appreciate that.
 
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Swimgirl57 replied to itmatsb's response:
No I'm not going to have the surgery, but I guess some people have found success with the surgery where they remove the muscle where they have been inserting the botox -- like the area that makes you frown; but I try to avoid surgery at all costs -- but is it safe with the botox (botulism)? Too bad it's so expensive. I'm going to keep staying on this Noritriptylene -- i seem to only have one migraine a week now - (ha! that sounds like a lot, huh?), i was getting 2 or 3 per week. I might try botox once -- pay for it out of pocket just to see if it helps...I think I've talked to you in other posts -- you post a lot of interesting information on these boards; it's always nice to hear what other people have tried.
 
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itmatsb replied to meaningfulc1952's response:
To; meaningfulc1952
So sorry to hear about your bad experiences. It must be because of your disk problems, because I have never heard of anyone suffering from either treatment.

Ask your doctor for a Butran patch (5mcg) that came out within the last year or so. It gives you a low dose of opiates 24/7 with no addiction, no rebound headaches and no side effects for me at. It might help you.

Good luck.

Sara
 
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itmatsb replied to Swimgirl57's response:
If you're only having about 1 migraine a week, you really wouldn't qualify for the Botox injections which are meant for people that have them at least 15 days a month.

Try the skin gel (by prescription) that you put where the headache is. If you get it on early, it takes care of most of my headaches. If you need more info, let me know.
 
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meaningfulc1952 replied to itmatsb's response:
Hi Sara,
I had my botox treatments yesterday and they were stronger than the first time. It is amazing, but I do not have the kind of pain that I had the first time after having botox. I do not remember the strength, but it sure worked well so far.

I have had an occipital nerve block and had a very bad reaction to it. I do not plan on having any more injections in my neck for the time being.

I have had physical therapy over the past years starting in the 70's and also last year. Unfortunately, I did not have any relief except when the therapist did the deep massage into my neck. She wouldn't do more than the one that I had. She was weird! I never went back after she had my therapy messed up with someone elses and I was the one that suffered from her mistake.

Hope this info helps you.
 
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itmatsb replied to meaningfulc1952's response:
To meanfulc 1952,
I'm so glad to hear that you had a good experience with your last Botox injection. That's terrific!

It doesn't sound like you had the right kind of physical therapy. The kind that I had involved digging hard with my finger in a certain spot on either my shoulder or the base of my skull (up from the neck) with my head slanted at just the right angle and the right amount of downward slant. That frees up my neck and shoulder stiffness. Just don't do any of those exercises for a week after your Botox injections or it presses out the liquid injected.

I really hope that your migraines get better.

Sara
 
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meaningfulc1952 replied to itmatsb's response:
Hi Sara,
Thanks for your message! When I get a migraine I take my meds and put a ice pack on my forehead and just lay down. That's all that I can do.

I imagine other headache sufferers do similar things too.

Yes, the last botox treatment so far has been just great.

Meaningfulc1952


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