Botox and Migraine

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I'm waiting to have Botox treatment for Migraine and wondered if anyone can tell me if they have had this treatment and what their experience has been like with regards to effectiveness and side effects?

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    Hi Diane, I had my third set of Botox injections a week ago. Mixed success for me so far. My migraines are still daily but my headache log shows a reduction in really bad days ( for me this is bed bound almost all day) from 10 down to about 4 per month.

    Side effects are low for me which is why I'm persevering despite self paying as I have been unable to tolerate most meds. Mainly soreness at the 25+injection sites, forehead, scalp, neck and shoulders - basically where the headaches hurt! This wears off after about 24-48 hrs. You should not wash your hair for a day so don't book a party night out as any tiny pin pricks are visible for a day or so. I seem to be worse for the first week, then the headaches tail off giving me a really good month or so before ramping back up by the end of 3 months and the next injections.

    Nb the Botox can sting going in but this fades quite quickly. However it is best not to drive straight away, my consultant makes me wait at least 30mins and be checked by him or a nurse that I am ok and not having a rare allergic reaction.

    I'm also trying high doses of Riboflavin at present - see Migraine Trust website for dosage. Some decent clinic evidence it is effective at 400mg per day.

    Good luck and hope that helps,

    Helen

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  • Posted

    Hi Helen, Thanks for taking the time to let me know of your experience, like you I have a bad time tolerating alot of drugs although sumatriptan is the only drug that gives me some relief without nasty side effects but there are only so many of these I can take! I also have fibromyalgia so its been a battle the last few years. I have daily headaches with migraines every 7 - 10 days that last for 3 days or more. I saw the consultant at the National Migraine Clinic in London for botox in November but decided not to have it then but to try staying off co codamol that I've taken for fibro for a long time as he wondered if I was having medication overuse headaches. I'm also having acupuncture which has helped my energy levels but not the headaches, so far overall I've seen little difference although I have had two headache free days which was absolute bliss, I've also started Riboflavin and Magnesium today. I have an appointment next week back at the clinic for Botox if things haven't improved, I do feel apprehensive about it, mainly the side effects but I think I will go for it as I need some relief from this constant pain, if it can lessen the days it has to be worth it and if I don't try I'll always wonder!

    I'm pleased you have found some relief from it and hope you will be migraine free very soon.

    As for the party nights they're pretty much a thing of the past, sadly sad

    By the way I have got NHS funding for my treatment, would you not be eligible for this?

    Wishing you well & thanks again

    Diane

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  • Posted

    Hi Diane, pleased you have NHS funding, if this round gives Sig relief I will go into battle but Cumbria is a poor nhs area for funding anything it doesn't have too. My regular gp is off for 6 months so I need to fill in my 10yr health probs with someone new. My migraines were trigged by viral encephalitis which also left me with problems with concentration, memory loss etc. My spine is also held together with steel! Tried 6 months with no regular analgesic - made life really painful but no reduction in headaches.

    I had 4 hrs head pain free this year - just to confirm its not my imagination.

    Have you tried indometacin? Vv strong anti inflammatory. Gives me best relief for head and back pain but I canot take it routinely as it spikes my blood pressure, but I suspect I have hemicrania migraine, which is one of a suite of indometacin responsive migraine.

    Good luck with the Botox and watch out for neon yellow pee on the B2!

    Lets hope 2014 brings us some relief

    Xx

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  • Posted

    I'm sorry you have alot to deal with Helen, sounds like a horrible thing to have happen to you and to be left with these problems. No I've not tried Indometacin, I shall keep that in mind and mention it to the consultant next week. I have been taking Arcoxia for the last 4 years, it's an Nsaid which suits me except I've discovered that it too puts up my bp and makes my heart pound so I have to leave off it every now and then until I start seizing up then I'm back on it which is usually about 7 days, sadly it doesn't help my neck pain or migraines.

    I can relate to having to explain your history to a different gp, mine is on maternity leave for 6 months, it's such a trial having to explain everything all over again to someone who doesn't know you !

    I really hope you can get more than 4 hours relief, I used to think it was hard when I had migraines every 4to 6 weeks now I wish I could go back to that, Oh to feel normal !!

    Thanks for the neon pee warning, you weren't wrong there!

    Hope it can be a happy new year for you too.

    Best wishes

    Diane x

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  • Posted

    Hi Helen, I didn't get to have botox last month as I wasn't well enough to get up to London but am going on Thursday, now it's getting closer I'm feeling quite anxious, it seems a mixed bag of results for people. I'm worried about the droopy eyelids and facial numbness I keep reading that people experience, do you get this side effect, if so does it wear off quickly? Also I've started getting quite bad hot flushes in the last few months & the first thing I feel when I get one is increased pressure in my head!! Hope the botox is working for you.

    Diane x

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