Botox for Headaches FDA approved
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DUKE MEDICINE
Timothy Collins, MD posted:
Many of you have heard that Botox (botulinum toxin) has been approved by the FDA for chronic daily headaches or migraines.

Chronic daily headache is defined as more than 15 days with headache in one month, so you don't have to have headache every single day to have this diagnosis. It does require injection into mutiple places in the head (25-30 places, very small amounts in each place)

I have not heard anything from the major insurance companies here in North Carolina about authorizing the use for Botox. Most of them were not paying for it in the past. We are still waiting for them to figure out how what the criteria are for using it (or for getting insurance coverage for it). One suggestion I've seen is that they may require a patient to have no response (or fail to improve) with at least 2 headache prevention medications.

How Botox works for headache prevention is not clear, but there is research looking into this (FYI, exactly how the other medications work for headache prevention is not understood either, so we don't really know why Topamax or Depakote work)

Botox has some potential side effects--It causes weakness in the muscles it is injected into. The weakness wears off, but it takes 3 months to wear off. So if you are injected with Botox and get a droop of the eyelid, it will be there for 3 months.

There are other side effects listed for Botox, but these are very very rare when it is used for chronic daily headaches, and I haven't personally seen them in my patients.
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yukonok responded:
I'm a single 55 yr old woman who's have chronic/daily migraines for much too long. After 2 letters from my Neuro to Blue Cross/Blue Shield for their authorization for Botox, their reply has been "denied - not medically necessary, for comfort and convenience". A 3rd 6 page letter with very detailed records from the last 10 years of repeated failed preventive treatments was sent recently by the same Dr, and I'm waiting for BC/BS response. I will pay out of pocket for botox treatment if need be, but I must admit that I'm frightened at the thought of up to 30 injections of live botulism in the head/neck, due to the amount of botox and proximity to the brain. I have experience with botox - I had 3 botox injections in the sphinctor muscle for a severe anal fissure 10 years ago to avoid surgery and it the injections were a success, but the side effect was nearly intolerable, because I was incontinent for 4 months! This was incredibly embarrassing at the workplace each day, and other public places. I don't know if the Dr. injected too much, or if some patients are more "sensitive" to effects of botox? But, I would repeat the same treatment to avoid the alternative surgery, and today, I'm diligent in my diet to avoid the choice! Concerning the botox for my chronic (almost daily) migraines, I'm concerned about drooping eyelids, or face, inability to hold my head erect or to turn the head in checking blind spots whicle driving, etc. Two questions - which/if any negative side effects were experienced by your migraine patients treated with botox? And...what happens to the live toxin over time, in other words where does it go in the body/the outcome over time? Does the medical community know? I'm experiencing 23 migraines a month (on average) over the last 8 years and have had more than 10 migraine a month for at least 15 yrs. These began at age 8,but became chronic in my mid 30s. I've run out of migraine preventive options using the gamat of medicines, (exercise/biofeedback included) so my only choice now is botox in an attempt to regain any quality of life. Thank you for information from other patient's experiences and any available trial/outcomes. I did see info on the FDA website, and understand that although it's rare, death has occured from botox injection, but I don't know the details of those occurances. I know the risk is extremeIy remote or the FDA would not have approved it's use for chronice migraine. I appreciate your taking time to respond to my questions, more than you know! I look forward to learning more from you before I take the leap with botox again. I'm hopeful for a remarkable outcome! Life has been passing me by for too long, and it's next to impossible to work, but I'm single and have no choice. Thanks again!!!
 
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yukonok replied to yukonok's response:
Well - I did not hear anyone including Dr. Collins reply to my concerns, so I bit the bullet and went for it. I received botox injections for my chronic migraines about 8 days ago. So far, I've had a daily migraine every day since, but in the last 3 days the migraines are less severe when they come on. I'm taking Zomig immediately as the pain begins (as I've always done), and it takes the same length of time to work, but I'm not feeling as sick in the interim. My hope is that with a bit more time, the botox will help me have to have fewer Mig., and not daily! I've been taking 5 mg Zomig almost daily for years and the literature advises not to use more than 3 days per month - so it can't be a good for my body, but then, neither are constant debilitating migraines! Thanks for any information/testimonies from others who have undergone botox treatment.
 
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FFWRN responded:
Tried Botox once. Got a tremendous headache after initial injection, but once that one went away, did have a decrease in number of headaches & severity. Insurance refused to pay claiming it injections all along my scalp were for plastic purposes still. LOL! Wish the shots had made me look younger & more beautiful!!! Anyway, won't do it again because of expense. I'll just keep taking 12-15 Imitrex a month plus all the other prescriptions, physical therapy, hyperbarics, the rare er visit which they seem to want to pay for which will quickly be over the price of botox every 3 months. What idiots.
 
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yukonok replied to yukonok's response:
UPDATE - it's been 2 1/2 months since the first series of botox and I added 20 mg nadalol per day one month after the botox because it only helped the severity of the migraines, but not the frequency (still had them almost daily). With the combination of the botox and nadalol, I'm now headache free for the last 9 days!!! That doesn't sound like much of a victory unless you've had 20 -25 migraine a month for years! I must also add, that I've begun taking 10 mg flexeril before bed, because I often get migraine during sleep, so it's just extra "insurance", and I sleep a little better. I go for round two of botox in about 3 weeks (little over 3 months from the 1st round). I got Blue Cross/Shield to cover this treatment for 12 months by hounding them over the phone and the neuro and his staff's great patience and continued faxes of historical data on my migraine history. They wanted to know every preventive I'd ever taken and how many times each was tried, along w/the outcome, the frequency of migraine, the duration of each individual migraine and 3 full months time of deliberation before they agreed. I blazed the trail for many other patients in the same boat/seeing this neuro. Warning...the injections are unpleasant in the forehead area, and for me, excruciating right above the ears (both sides in hair/scalp) but quite tolerable in the back of the head/neck/shoulders. I did have some temporary side effects...a bad ear ache in the right ear within minutes of injections (lasted about 5 hours and has come/gone a few times since but with less intensity) and very strange spasms presenting as an intense fluttering deep in the eardrum of the other ear the evening of injections and one other time soon after. If I hadn't fought so hard to get the insurance to relent and help pay, I would have paid the full $1500.00 to do it anyway out of desparation. Now...the copay is over $500.00, but I'm doing it again. I feel that I have my life back over these last 9 days, and I pray it continues. God Bless you and don't give up!
 
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Lainey_WebMD_Staff replied to yukonok's response:
Congratulations Yukonok!

We love to know when our members find a solution and share with us!

We keep a weekly Migraine Journal and would love to have you post an update there to let members know what has help. Here is the link.

I am so happy that you found a treatment and hope it will continue to keep you migraine free!

Take care,

Lainey
Pain is temporary. It may last a minute or an hour or a day or a year but eventually it will subside and something else will take its place. If I quit, however, it lasts forever. Lance Armstrong
 
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itmatsb responded:
Botox injections have greatly helped me, but only greatly for about half the time in between injections which I get every 9 weeks. But I do get some relief the rest of the time. It takes me 15 days after the injections for it to work, so don't write if off if it doesn't help right away. The doctor had to raise the amount to 200 units for me to get a response. No side effects except a sore neck and back of head the first day which I just put ice on it. Yes, it hurts, but not nearly as much as my severe migraines.

My insurance company BCBS of MI has refused to pay for it. Now the State Insurance Commission is investigating whether the company does need to pay for it. If not, we are going to go to court to fight it. The injections cost me over $7,000 each time at the University of Michigan.

By the way, I'm also helped by monthly nerve block injections and herbal Petadolex. I had severe 24/7 migraines for years before these 3 remedies. I took many prophylactic meds which didn't help.
 
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catlee_101 responded:
I have been a migraine sufferer since childhood and now I have HAs almost daily. I was recently told by my Nerologist to consider the Botox injections. I would love, no, LOVE to experience more days headache free without depending on a pill, but I seem to be a side effect magnet and I am scared that I would get the Botox injections and be stuck with a sagging face or other uncomfortable side effect until the medicine wore off. Will doctors/insurance allow you to do injections in less visible areas first to see how your body responds? If not and I end up with a droopy face, would that possibly be considered a health condition that I would be able to apply for FMLA? (I know that's a vain question but I'm just curious).
 
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meaningfulc1952 replied to catlee_101's response:
When I was 12 yrs. old and started my period that was when my headache problems began. After multiple jaw surgeries and neck injuries I now suffer from chronic headaches which are all different. The tension headache is one and the migraines are also different too. Having seen so many neurologists over the past 30 yrs., I finally have some hope that botox injections will help my headaches. My new neuro dr. is much younger than me, but he knows what I am talking about. So now I am waiting for approval from my 2 insurances so I can get these botox injections. My dr. will be starting in my neck area where those muscles are like knots and feel like they are strangling me. The only migraine med that has helped me is the imitrex. Those ins. co. sure don't allow enough of those to be filled each month though. Currently I get more than 10 migraine headaches per month. That is no way to have to live. Pain rules my life and controls my ability to plan "fun" things, such as going to a movie, visiting my dad, etc.
 
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gmbuckalew responded:
Thank you for the info. I actually have an appointment 7/28 after getting approval from my neurologist and my spinal orthopedist, to meet with a headache clinic for Botox injections. I have been getting treatment for migraines for 4 years now but have started getting very bad neck pain which has increased the # of migraines since December 2010. The orthopedist has determined after a clean MRI and CTSCAN that I have a form of Dystonia and the Botox will be beneficial not just for the neck muscles and as well as the migraines. I heard about the possible weakness in the neck from the injections but I'm glad to know it can be reversed eventually.
 
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itmatsb replied to gmbuckalew's response:
I was also afraid of getting Botox injections after one neurologist told me that he had one patient whose head flopped forward until the Botox went away. Then I found another neurologist who did it more frequently and no bad cases with any of his patients. I've been getting Botox injections for over a year with no problem and improvement with my severe 24/7 migraines.
 
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gmbuckalew replied to itmatsb's response:
Well I had my appointment and I've been approved for the Botox treatment. I am just waiting for insurance to approve it so my fingers are crossed. I did ask my dr about the dexterity in the neck muscles as a negative side effect and he said that is rare and can happen if the injections are placed into the wrong muscles, especially if done over and over. He said the most obvious side-effect I'd see is the lack of facial expression, especially along my forehead but the benefits outweigh the costs. He said if I did experience the lack of dexterity in my neck, I'd regain strength in my neck when the treatment stopped. I am looking forward to starting it because for example, this morning I woke up with a headache on a pain scale of 7. I'm trying to ween myself off aspirin/Goody's, etc since I've been taking them so much and he really wants me to for the sake of my liver, stomach, etc. But I'll probably have to take an Imitrex to ward off any further pain. I'm just so tired of being in pain and reaching out for pain medicine.
 
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itmatsb replied to itmatsb's response:
I replied previously that I was fighting Blue Cross Blue Shield Insurance to cover my Botox injections after they denied it. The State insurance commission ruled in my favor. The insurance claimed it was experimental which the State refuted. The insurance company had to reimburse me for previous Botox injections. Now that the FDA approved it on October 15, 2011, it gives patients much more to fight with.
 
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Patricia3 replied to yukonok's response:
Hi, I have just gotten botox injections about 6 days ago and I am still having bad headaches everyday along with neck and shoulder pain. In fact the same day I got the injections, that very night I had a headache I thought my husband was going to have to take me to the e.r. for it was so painful and the worst one I ever had. Like you I am hoping as the days go on that it will get better. I am taking migraine meds every day also I use maxalt (very good) but I don't want to keep taking this either all the time. I hope I didn't make a mistake in doing this.

Good Luck. Pat
 
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itmatsb replied to Patricia3's response:
Did you expect the Botox to work within 6 days? Shame on the doctor who gave them to you. My doctor told me 1-2 weeks. It always takes 15 days for the injections to take effect in me. And if the Botox does not work, they usually start off at lower doses. The first time I had the Botox, I got 100 units which did nothing for me. The next time it was increased and did far more for me. Also additional injection dates will increase its effectiveness. Even if it doesn't help you, was it a mistake to try something that may help you? Also if you take pain relievers every day, you most likely are suffering from rebound migraines. I'm assuming that you tried a number of daily preventative migraine pills. It's those who have not been helped by a number of the daily meds who are most likely to respond to Botox. Give it more time, then check on the dose that you were given. Respond back to me if you have any questions. Good luck. Migraines are terrible to deal with.