Lets Talk Botox

Ladies, all the ladies, help me out now, uh, yeah, c’mon, all the ladies… Sorry, just had a flash back to my days dancing to Salt N Pepper… moving on.

So we’ve all heard of the wonder treatment Botox (source: botulinum toxin or botulism). We can be rid of our furrowed brow lines and our crows feet after only a few treatments of this lovely painful injection. We can look years younger. We can hold onto our youth. We can get hooked onto the muscle paralysing drug.
[size=150]
**Now Botox for Migraine **[/size]

Botox has been being used for more than just a face-over for probably the last 10 years but it is really only in the last couple of years that it is really being pushed as a mainstream treatment for a variety of chronic conditions of unwanted muscle spasms such as:

Hyperactive bladder (as part of MS)
Children with strabismus (cross-eyes)
Cerebral Palsy
Cervical Dystonia
Spasmodic Dysarthia
Hemifacial Spasm
Blepharospasm (rapid blinking of the eyes) - MaryAlice - your reply to my other post mentioned your brother had recently been diagnosed with this. Has Botox been offered to him as a suggested treatment option? Please investigate.

It was a decade ago that cosmetic doctors began to report people being treated with Botox as an anti-wrinkle agent also had fewer headaches. Scientists were obliged to reconsider their understanding of botulinum; it seems botulinum can also disconnect pain nerves as well as muscle nerves.

The evidence for botulinum’s effect on migraine was equivocal until 2010, when a large trial showed it helped those who suffered from headaches 15 days in a month, eight of which were migraine type headaches. “It appears to be those with a particular pattern of migraine that respond,” says Barry Snow. He has been using Botox as an off-label treatment for chronic migraine since 2004 and says it works in about half of the patients it’s given to. Some say they have half as many headaches and others say the headaches are half as severe. “And for some, it will make a dramatic difference.”
[size=85][cited The Listener article][/size]

So - another round of questions from me.

  1. How many of you have heard of this as a serious treatment plan for Migraine?
  2. How many of you have tried and tested it and was it effective in any way?
  3. Has anyone been treated using Botox for a different illness aside from migraine? (if so what illness and what was the outcome).
  4. Is this something you would be prepared to try if it was offered to you?

Now, my cousin is a ‘classic’ migraine sufferer as it my mum. The typical chronic headache pain, nausea, aura and all that other fun stuff. My cousin has been being treated by Botox for her migraines for a while now and she has seen a big reduction in frequency and intensity. I also have a friend who is being treated by Botox for nerve pain in her head as a result of having her scalp peeled during a surgery. They have labelled it under migraine still so she is technically being treated for migraine.

Some countries this is now publicly funded and others you will have to go down the private route. And its expensive. Please read the link below from NICE [size=85](The National Institute for Health and Clinical Excellence in the UK). [/size]

nhs.uk/news/2012/05may/Pages … raine.aspx

NOW FOR SCOTT!!!

So my dear friend, since you cannot even survive the ordeal of buying a new mattress (latex or organic) and your neck is constantly jacked up in pain and tension - is this something you HAVE or WOULD consider doing to free up your neck muscles?? I cannot help but lean heavily towards you trying this treatment since your neck is a huge focal point of your migraine issues. My neck has only just started to cause me problems. Whilst my electric brain zaps stem from the back of my head, its that dip in the back of the head just above the neck where all my electricity starts, my neck is now joining in the party.

My neck over the past few days has started to feel tense and now I’m suffering with nausea which I can tell is stemming from how my neck is feeling.

I am seriously considering this as an option although the cost is a huge factor. Some of the prices I have come across here in NZ are $3000 for the initial treatment followed by $1400 every 3 months upkeep! :shock: Its staggering.

But what if…

Hugs, Team GB :mrgreen:

Hi Mupp,

Have a listen to this link to NPR that David found. In it they discuss the use of Botox and the mode of action which I hadn’t heard before. There is a specific sort of Botox that is used for migraine and what happens is the poison not only numbs out the muscles but bathes the trigeminal nerve and dumbs it down as well. in other words no pain reaction goes off so yeah, it really does make sense for me to look into this given I’m a walking pain machine. :shock:

Be warned that the interviewer woman sounds like she’s had a stroke. She talks in super slow-mo.

Hey Mupp -

Yes, it did come up in a discussion with one of the docs my bro saw early on, but that doc wasn’t a specialist in blepharospasm, and my bro was at that point waiting to get in to see the doc who would be qualified to prescribe or do this sort of thing (a neuro-ophthalmologist). He was told Botox injections would have to be done on an ongoing basis (I think every 6 months was the frequency, but I’m not sure about that). And it would involve a number of needle “sticks” around his eyes, which he said was not something he was exactly thrilled about! But, this was before he heard about the FL-41 tint, and he was desperate and figured it was his only hope, so he was starting to prepare himself for the inevitability that this was going to be in his future.

We brought the non-prescription pair of FL-41 lenses that I’d bought for hubby to a family party and let bro try them (I have a pair of prescription lenses tinted with FL-41, so he couldn’t try those or HE might get dizzy!!). He immediately felt relief and his blink rate slowed. He hadn’t seen the specialist yet. So when he did, he asked about FL-41, and the doc said the benefits are well-documented and he was all for putting the tint on glasses for him right there at that eye clinic because THEY did it right there (I had no idea we could get FL-41 right here in our own state - I sent away to University of Utah for mine!). This clinic is a large, well-respected eye clinic, and they did charge a little more than the University of Utah, but my bro got his glasses quicker than if he’d sent away for them. He’s very happy with the marked improvement in his blink rate and the elimination of eye clenching (involuntary closing and staying shut for several seconds).

He prefers this approach to being stuck with needles around his eyes every 6 months. :smiley:

Muppo, this is definitely a treatment option that is being offered in the USA, however I do not know any info on how effective it has been. Here is Hain’s take on it–it is decidedly mixed:

http://www.dizziness-and-balance.com/disorders/central/migraine/Botox.html

That being said, all of the treatments for this stuff is hit and miss to some degree right? I think the biggest problem is that with the Botox it is still hit and miss but you’re out thousands of dollars.

My Dr. has brought this up as an option. He said it is something to keep in our back pockets in case other other med trials don’t work. I have daily dizziness and between 10-15 migraines a month. I don’t know if mine start in my neck, or if the neck pain is a side effect of the migraine. I often find a trip to the chiropractor helpful.
Sarah

I was wondering this same thing. I check out various websites with Dr. Hain’s site being one of them and I remember reading something about botox and remembering it being positive. So when I saw the link, I see his site saying something different. I have noticed it sometimes contradicts itself.
This is also what Dr. Timothy Hain says. Botox injection for spasm. This can be sometimes performed if chronic migraine headaches are provoked by neck pain. We offer Botox treatment in our office. Maybe Im reading into it wrong? But he offers it there. Oh ya, I also thought it was weird that he has an accupuncturist at his office. I noticed the info on the wall when I was there a few weeks ago. Hope botox is an option, I would love to try it, and if there is any extra, a little in the forehead wont hurt. hee hee

Muppo–your area sounds like the occipital area like mine. (see my previous post). I have had an eyelid that has been having spasms almost daily now for months. When I went to the orbit specialist for my tumor checkup and asked him about the spasms he said the safest and best drug he uses in his practice is Botox. He said he would inject the eyelid area and it would cost about $200 each shot and not covered by insurance (here in US) and that it usually takes about 2-3 shots to totally get rid of it. Unfortunately my husband is out of work right now…so I am having to deal with the annoying eye movement :evil:

It’s worth a shot for the muscle stuff. I think I have seen where people with the occipital neuralgia have been helped by the shot.

Teddypan - are you on any migraine meds right now? I’m asking because Topamax gave me eyelid twitches while I was trying it. (While I was on 25 mg it was just my left eye - which was constant after the first week on Topamax and lasted the full 5 weeks I was on it - and the times I tried to up the dosage to 37.5, the right eyelid would start. It all stopped as soon as I stopped the Topamax.) Anyhow, all that to say, it’s possible it’s your med(s). Not that you’d want to dump them just for that if they’re working, but it would be a “free” way to cure the twitch. You’d just be left with the oh-so-pleasurable experience of needing to find a new MAV med. :wink:

— Begin quote from "Kayera"

I was wondering this same thing. I check out various websites with Dr. Hain’s site being one of them and I remember reading something about botox and remembering it being positive. So when I saw the link, I see his site saying something different. I have noticed it sometimes contradicts itself.

— End quote

It is always so interesting to me how different doctors can have such different opinions! I see Dr. Cherchi who is Dr. Hain’s partner in practice. I was also surprised that the course of meds. each recommended was in a different order. Like everything else it a guessing game!
Sarah

I talked with my doc about the order of meds and he admitted that his partner disagreed with him on the order of meds too. He said that after I responded to Topamax he took my care to her and asked her what she would have done (not telling her what I had responded to) and she said she would have started me with the Topamax rather than Verapamil and Nortriptyline as he did. So he apologized to me. :slight_smile: But it is mostly a crapshoot–the docs aren’t sure exactly what will work, they just have to guess based off of past cases they have seen and your symptoms.

Muppo,

I know that here in the US, Botox is a pretty common use for migraine treatment. I have many friends that use it and let me say, I AM SO JEALOUUS. But in order for our insurance to cover it, we have to 1) first show that we get a minimum amount of migraines a month(that amount varies by insurance) and 2) we have exhausted all our medication treatments and they have not worked. I haven’t looked into it all the specifics but I hear it’s not hard once your doctor writes a script.

I really think for someone like Scott where nothing has been able to give him much relief from his neck pain this might be magic poison he needs!! :twisted: Sometimes it takes a devil to fight a devil. And Muppo, this might help you too.

I am certainly keeping Botox in my back pocket as an option if all else fails. And hell, if I can look younger too?? That would be amazing. Because MAV has taken its toll on my physical appearance. It’s taken away everything. The fex has worked wonders on how I feel but I can’t reverse what it did to my appearance. Well some of it.

Let us know if you try the Botox. I know there are tons of MAVers on Facebook that do Botox and absolutely love it.

Does anyone think botox can help the dizziness. My doctor believe it’s more for the pain, and was very doubtful that it could help the dizziness. anyone’s MAV helped by botox. as you know, I would do ANYTHING to get my life back.

I personally think it would because as we’ve all learned, the headache or pain is just one of the symptoms one can have from the migraine. I am by no means an expert in meds or treatments but if we take care of the root of the problem which appears to be the “migraine” than there’s a good chance the symptoms go away. All these medications these doctors are prescribing are for migraines yet I rarely get headaches, but my symptoms are going away. Well not completely. But the FDA has approved Botox as a treatment for Chronic Migraines. It works by blocking the Chemical changes on nerve endings. So it makes sense that it would work wonders for us mavers. I know a lot of mavers have used it with success And they inject it into the forehead, neck and back area I think.

Lisa, I’m so sorry that you are still in the same debilitating state. I think that Botox would be something to talk to your Dr about and possibly try. It does come with se’s as well but not as bad as these darn drugs. I have a few friends that take Botox for migraines and they love it. I would’ve already done it but my insurance won’t cover it yet.

You are in my prayers. Let me know what you find out.

Erika-no I am not on Topa. I’m taking Inderal. I believe the twitching is from STRESS! Drives me crazy and gets worse on days when stress is higher. Thanks for the info though.

Ah, yes, stress… The only other time I had eye twitching was about 4 years ago when I was studying for the GRE so I could get into grad school. Kept coming and going for a few weeks. Stopped after I survived the GRE and was accepted into the program. Go figure… :wink:

I live in Pennsylvania and I suffer from migraines. I have been in several car accidents where I suffered whiplash. I also have a family history of migraines. The older I get the worse they get and the more frequent they are coming. Triptans and ergots do not work for me and over the counter meds are like sugar pills. The only thing they succeed in doing is giving me a rebound migraine. My migraines lasted typically three days and I was getting one every 7-10 days. They were debilitating and I was missing a lot of work. My neurologist finally said he did not know what to do with me so he referred me off to a Headache center at a major university. I was also starting to suffer from vertigo more and more often and referred myself to a balance disorder clinic. The doctor at the balance clinic saw me first. He started me on low dose Klonopin .125mg twice a day. This has almost eliminated the vertigo. I am also taking Prozac 20mg daily to help with the seritonin uptake. I have been told that this could also be a migraine trigger. The two meds together have decreased the intensity but not the frequency of my migraines. The upside is that I can work with the pain. It is more of a headache than it is a migraine. On June 6th I had my first dose of therapeutic Botox. The headaches were almost eliminated. They were not coming as often but over the course of the past couple months they are coming more frequently and the intensity gets worse with each one. Overall, there is great improvement. I have not missed a day of work related to my migraines since the Botox. I am scheduled for my next dose September 5th. I have read that some people do not respond at all to their first dose of Botox but see a great difference with their second dose. I hope that this second dose eliminates everything. But even if things remain the same as after the first dose I am pleased. Insurance did cover my Botox. I received a total of 31-40 injections. They were near my eyebrow, also at my hairline at the top of my forehead, in my temples, in my head, in the back of my neck and across my shoulders. They were quick and just felt like a pinch. The pain of the injections were nothing compared to the pain of a migraine. If you can get approved I strongly recommend trying it if nothing else has worked for you. I did have one adverse side effect and my doctor tells me that this has never happened to any of her other patients. My left eyebrow and lid dropped some. I had no control over my eyebrow. My right eyebrow appeared to be much higher than the left eye. Over the past couple months it is improving. It is a small price to pay to get rid of the migraines. Allergan says it should go away. I would be upset if I received Botox for wrinkles. IMO the eyebrow looks worse than the wrinkles but freedom from migraine pain trumps all.

Thanks, Mary. What you said makes such good sense, but I was also thinking that there are meds (e.g., abortive migraine meds) that help chronic migraine pain and not MAV symptoms. so, I wonder if Botox would also only help the pain. my doc seems to think so. what do you think?

Hello lovely Lisa

This is a hard question to answer because everyone is going to respond differently. I dont have ‘migraine pain’ (occasional headaches only) but am still considering this as an option worth trying. I wonder if it would kill off the electricity and my ‘in-head’ spinning… Next option - lobotomy. :?

Furrykidmon I’ve heard of the eyebrow thing happening before as a freak reaction to it but it will wear off as the botox wears off from that area so, I’m sure you’re eyebrows will realign soon! :smiley:

Muppo,

That’s what I’m wondering: can it help the “in head” spinning. as bad as the rocking in, and it is HORRID, this “in head” spinning is in a sense more disabling. I would do anything to be rid of it. I can more see Botox helping the spinning than rocking (disequilibrium).

— Begin quote from "MAVLisa"

Thanks, Mary. What you said makes such good sense, but I was also thinking that there are meds (e.g., abortive migraine meds) that help chronic migraine pain and not MAV symptoms. so, I wonder if Botox would also only help the pain. my doc seems to think so. what do you think?

— End quote

I’ve always assumed Botox would work for pain but not for the other symptoms. Would be amazing if it controlled all (or many other) symptoms.