Migraineurs Support User Group
What is your experience with Botox?
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A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
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What is your experience with Botox?

I just had my appointment with the neurologist.  He is suggesting Botox to help with migraine prevention.  He is looking into getting authorization for it first, like with the insurance and whatnot.  Everything I've heard of using Botox is that this should at least reduce the severity of the migraines and reduce how often I get them.  I would like some input from others who regularly get Botox shots.

Also, has anyone here had a sleep study done?
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12 Comments
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1552758_tn?1304932019
Hi
I had botox suggested to me by a client from Belgian about 6 years ago and she sent me a study done with a Cerebal palsy child. I had also had a friend who had it done reguarly for spastic toricollis (involuntary turning and dropping of the neck) . Both cases worked well and then my neurologists suggested it. She gave me one injection in the right side of the back of my neck. Well, I swear she used an injection needle that was a thick as her finger and so that was the last that she saw of me! As she was the only neurologist in the whole country I did not have any other choices. I mentioned it to my eye specialist and as he was injecting botox on his wife for her wrinkles, he suggested that he could give me a go but first he would check exactly where with his colleagues in RSA. Not exactly the most professional approach but I was desperate to break the cycle of headache and migraines. Well, the first time I had 30 injections in my face to see how and where it worked!!! Then we progressed eventually to only doing the right side of my face, on the temples and down the neck to the back. Worked really well, as the cycle of constant headaches/migraines got broken and I could reduce the medication drastically. I was also having terrible rebound headaches from too much medication. I did the botox about 4 times over a period of a year and also had some needle theraphy in the shoulders. Based on my experience - I would recommend it. Another suggestion that was made to me by a naturpath is that constant pain has a learned path, in other words sometimes we might not have the pain actually but the pathway is there so we still feel it! So if this is the case then breaking a constant cycle is really beneficial. Something else to think about.
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681148_tn?1285160820
Thanks.  It sounds like it's worth trying.
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875426_tn?1325532016
Well, the neurologist who tried it on me was planning to give it two tries, but after the first set of botox shots failed so miserably to stop my migraines, he didn't want to give it a second chance.  I had a huge menstrual migraine during the time when the botox was supposed to be working, as I recall.  I used to have many, many migraines prior to my hysterectomy, but down to a few times a month now, I think (last I counted it was 5 per month average but maybe it's even better lately).

I actually was diagnosed by the first neurologist I went about my headaches, which were most every day at the time, as having headaches that were 60 percent migraine, 40 percent muscular.  You would have thought the botox would help the muscular part at least- I don't know maybe it did,  but with the migraine part of my headache so bad, all it seemed to do was give me some temporary paralysis of muscles- couldn't move my eyebrows much if at all.  But it failed to stop the migraine problem.  He did lots of injections, I think some in the back of my head as well as the front.

But, you might want to give it a try, as I believe some, like Agerus, find help with it.
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681148_tn?1285160820
Interestingly, the site he wants to inject isn't where you would expect it to be, like the furrows of the eyebrows and such.  He is talking about in the shoulder area nearer to the neck and the tempal area, so he won't be messing with the expressive part of the face.  

I saw the chiropractor yesterday, and she didn't sound like she was against trying it.  It either works or it doesn't, right?

I do have a neighbor who has injections to control the excessive tics he has from Gulf War Syndrome.  I can always tell when it is near time for his injections, because there really is a dramatic difference in how much involuntary movement he has with and without the injections.  He always has some involuntary movement, but the injections do reduce this in him to where it is noticeable to anyone observing him over time.

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875426_tn?1325532016
If you have any kind of shoulder/neck tension and jaw muscle tightness, I hope it will help.  Of course, there is risk with any medication, so I hope you find it works out fine for you!  Let us know?
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681148_tn?1285160820
I definitely have all the muscle tightness you're talking about, including TMJ issues, which of course is the very reason, I'm sure, that the neurologist is considering the two places he mentioned.  The neck and shoulder and the temple.  He said that the idea is to disrupt the pain pathway to the meninges.
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875426_tn?1325532016
Just noticed you asked too about a sleep study- the only one I had was for sleep apnea because I was waking up daily with a headache.  I didn't have enought episodes to be diagnosed with it, though I did have some of not breathing, including a one period for I think it was 46 seconds or something where they said it was like my throttle was on open for oxygen, because it didn't drop below I don't recall if it was 94 or 96 percent (think the latter)!

Anyway,  is the doctor suggesting you get a sleep study and if so, what kind?
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681148_tn?1285160820
They're looking for either Upper Respiratory Resistance Syndrome or good old fashioned sleep apnea.  I wake up with daily headaches, too.
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875426_tn?1325532016
I know TMJ issues can cause a person to wake up with headache too and I have neck issues, so position is important too.  When is your testing scheduled for?
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681148_tn?1285160820
Tuesday night.  Yeah, I have back and neck issues, too.  That alone makes it hard to sleep.
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875426_tn?1325532016
I wound up taking benadryl (years ago) in order to get to sleep with all the fal-de-rall on me- not so great for depressing breathing, but I had to sleep for the test!
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681148_tn?1285160820
I'll keep that in mind, because my allergies are driving me nuts anyway.
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