Botox, or not Botox, that is the question....

I have been to see my neurologist last week and we discussed the future strategy for handling my M.
After years if various upheavals my M patterns have settled to the bouts of several days a month of comparatively mild pain levels (4/5 sometimes 3 on the pain scale), which are not too difficult to live  with, but a distraction all the same then several painfree days,
They respond well to Imitrex, but they come back next day during each bout which cam last from 5 days to a week.

Then I have several pain free days, then prodrome and the new bout starts again. I learned to live with it, as we all do, but obviously I would prefer to have more pain free days. I am on Gabapentin as a preventative (hence lower pain levels) and I do not wish to change it, as other preventatives did nothing for me, so we decided not to make changes in this respect.

I asked if he could suggest anything else, and he said that since we can now have Botox treatment for M here, they have been doing it for some time (I am in UK, so it is free under NHS) and they are having some promising results, but that in his experience if it does not work for the patient first time, it is not unlikely that it will work the next time.

He explained that they give 32 (sometimes 38) injections in the forehead, and at the back of the head, as well as in the neck region, and that it can be a little painful, but not unbearable.

I must admit that apart from s/e, I am also concerned that I will look like some of this Botox-ed older women whose face looks immobile and waxy, like a mask.
I have some friends who look like that, I am sure you know what I mean, as Botox is more popular in US then here.
Yes, I know I could definitely loose few lines, but I would not do it for cosmetic reasons, as I don't think it is a good look. Just a personal preference. Sorry.

So, when he suggested Botox, I asked if the effect of Botox for M is the same like "cosmetic" Botox injection. And he laughed and said, that it probably is. I said oh Dear, with a long face, and he laughed again surprised at my reaction. He then said that I should not worry too much, as good, or bad then effects of Botox wear off anyway in about 3 month time, so injections need to be repeated again if we do it to prevent M.

I said I need to think about. I will read more about it and I wonder what people who had Botox for M here, think about it and if it is worth having.

I think its definitely worth a try, especially for free, although I'm not sure it has any better of a chance of working than anything else. It has a very low side effect profile, especially when done by someone with a lot of training and recent practice.

Plus, you will know pretty immediately if it will be helpful, and you shouldn't get any interactions with other meds (some folks don't get much relief from one med alone, but adding in others give them too many side effects). I sure wish it had worked for me.

With the migraine protocol you shouldn't have that scary look, as they do a lot of it around the hairline and neck, none around the eyes or mouth, and only some in the forehead. Nobody except my husband was even able to notice anything different. However, I wasn't able to move my eyebrows much at all for about four months after the injections. I liked that it smoothed out the vertical lines between my eyebrows from squinting from the pain.

I did find the injections painful, but I've had a lot of worse procedures. Thankfully no bruising or bleeding afterwards; I went right back to work. Some people get some increased pain immediately after though. Good luck! Best wishes.

as i've mentioned in my coconut oil posts, this stuff is working well for me, but is most definitely not a cure.....

my nice new neuro went through the list of possibilities to treat me, and of course, i've been through all of them at one time or another in the 44 years past.  he did not peg me as a difficult patient, nor seem at all exasperated that i said "been there/tried that" to everything, including botox.

but i said i would think about trying it again.  i paid for it out of pocket, years before it was approved by our medical system, and it did not help at all.  but then, it was done by a neuro who had little experience; nobody had the experience then, as it was a brand-new thing to try.

this neuro assured me he's had lots of experience, and will stay far far away from my eyelids, so they don't droop for 6 months, as i told him that's the thing that happened previously.

i will probably let him try this in a month or two, and i expect no side effects at all.  dianne

Thank you so much for your informative feedback Tortoisegirl, especially about not getting this scary look. This is great since I will be able to discuss this and exact location of the site of all the injections as I did not ask such specific questions after he told me about the forehead and neck.

But he is very good at explaining things so I will be more specific now. Funny I also have this vertical line between my eyebrows from too much squinting, courtesy of the lifetime of M. It makes me wonder if it is more common feature for many of us?

Diane I am so sorry that your Botox had not brought you much relief, just as well that you were able to find some help from the coconut oil. The beauty of it is that it is such a natural product, so no s/e. This is great news.

Yes, I think that some doctors will not admit that they have no experience in various procedures, and treat us like guinea pigs whilst learning on us, which I understand, but I think it is unethical when we are not told that in advance.

I have experienced it once or twice when I was given occipital nerve injection, especially the last one which was given not by my neurologist but in a different part of hospital where the injections are given by neurological residents. I knew straight away that the last one, who was very arrogant, was not approaching the site correctly, but when I was trying to say something he just carried on and the injection was much too low, and had practically no effect this time.

I had some which had quite lasting results and I would do it again. But my neuro said that with Botox they are having more promising results, with the patients who respond to it.
Thank you so much to both of you for your response and I hope whatever treatment you try, will help.
I will certainly consider Botox if things get worse for me in future.
Mini

My brother just had it done and its helping him considerably.
I think it's definitely worth a try. The key is to get a doctor who is experienced
In where to inject it for migraine.

I am 27 and have do far done it twice on NHS UK

No negative side effects for me

I'd recommend it might not have any benefit till the third time but NHS only pay twice with no effect

I'm due a third round soon, I only noticed an effect in month 6 they do it every 3 months
Month 6 was the best month I've had all heat
But could have been from my chiropractor and acupuncture

Xxx

I just saw a new MD on Tuesday and he was asking me if I had ever tried Botox for migraines.

Told him that I have not and that is because my previous MD that I was with for 13 years absolutely did not like the idea of Botox and told me not to do it.

Told him I would be open to at least giving it a try but wanted to check and see if insurance pays anything on it.

And of course they won't pay one red cent toward Botox injections for migraine.

So, I guess for now, that is not an option for me because they are really pricey here.

I have so much medical debt as it is, there is no way I can go in any deeper, at least not right now.

Hopefully in the future, when I get some of this debt paid off I will be able to give Botox a try.

Mini:  If you can get injections for free, I think I would at least try.  I mean I understand that you may have your reasons as to why you just don't feel Botox injections are right for you, but you can't beat FREE!

Anyway, let us know what you decide to do and know that I will be keeping you in my prayers.

You are such a sweetheart and deserve some real relief.

Take care,

Cindy

Cindy: As Botox is FDA approved for chronic migraine, insurance has to cover it if your doctor writes it is for chronic migraine and you meet the criteria (> 15 headache days a month which haven't responded to at least a few preventative meds). What exactly did you ask your insurance about Botox coverage?

A doctor who has experience in giving Botox injections for chronic migraine should have an office staff well-versed in getting insurance approval. If they don't help, it could be a red flag. Agreed that if you have any significant out of pocket cost it isn't worth it to try the injections, as it doesn't seem they are any moee likely to help than any other preventative med.

There are some advantages though, such as a very low side effect profile, effects may last 3 months, and you should know pretty immediately if it helps. Interesting your last doctor didn't like the idea...you ever get any specifics? How is the new doctor working out? Best wishes.

Thank you so much for all your replies, and for your kind comments Cindy. I have been seriously considering Botox as a results of this feed back, only I have been dealing, with more urgent health issue at the moment (gall bladder problems and uncertainties) and this is taking up all my attention lately.
Also, the good news is that my M is not troubling me as much lately, so the whole issue of Botox is not so urgent at present.

I am so very sorry, that you are having problems with getting insurance cover for Botox, but I do hope with the help of some more willing doctor you might be able to resolve this soon. Living with M pain is bad enough, but having to deal with money problems as a result of your pain, is just too much, I am so very sorry.

I wish everybody on this forum a break form all kinds of pain, this weekend.
Mini

Tortoisegirl, Thanks for the info about insurance.

When I talked to the insurance I just told them that my Doctor wanted me to try Botox for Migraine and they said they don't pay for Botox for any reason.

This new Doctor is a friend of my husband's and I really like him.

I will ask his nurse if maybe they can talk to the insurance for me and maybe there will be a different outcome.

Mini,  Hope you get your gallbladder problems resolved soon.  I had problems with mine for years til I finally out if removed.  

I will let you all know what the insurance says.

Cindy

I live in Canada and have had 4 treatments by my neurologist. The botox itself was covered by my health insurance but his $150 "administrative fee" was not. He did 30 injections - a few in my forehead and the rest in different spots around my head and neck. Unfortunately, all the botox did was give me a pretty wrinkle free forehead which is too bad. I know some people have had luck with it though. Worth a try I think.

Thanks for the info about Botox and insurance.

I've called up my insurnace company, and they claim the won't pay for Botox for migraine.

I've talked with two different pain doctors/neurologists about Botox, and both told me that Botox is very expensive and that there is a significant out-of-pocket cost, even for people with chronic migraine.

It really gets confusing, particularly when feeling so ill from constant migraine pain. I really wonder if Botox would make any difference. If it was free or not too expensive, I would try it.