Botox on nhs for migraine: Hello, has... - National Migraine...

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Botox on nhs for migraine

KateArn79 profile image
10 Replies

Hello, has anyone had Botox on the NHS to help with migraine. I was considering the nerve decompression surgery in Berlin, but my neurologist has advised me against it. He has said that the Botox test I had in London will hopefully have broken the cycle of migraines. If they return when the Botox wears off he will inject Botox agsin for me, but in 31 sites. Has anyone else had this or had any success with it?? X

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KateArn79
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10 Replies
teadrinker profile image
teadrinker

I have botox in my head & neck for chronic pain in my face, & I also get migraines. The doctor who does it also does the migraine clinic here & says the injection sites are similar. So whilst I'm not having it for migraine & they aren't following the botox-for-migraine protocols I have some positive feedback for you!

It took a few attempts to get it right but they may be because of my other pain problems. However, the botox has successfully reduced the severity of the migraine headaches for me. By that I mean if I get one I can cope either with just basic pain relief or don't need anything.

I had a bad patch for a while when things got out of control so I now take a low dose of beta blockers. Occasionally I get a bad attack with a very bad headache but maybe once every few months rather than every week.

The mild migraines still happen more often but I can carry on as normal.

I feel as if the botox has given me my life back. Not sure how much longer the NHS will fund this for though...

Just to say, the injections aren't so bad really. Sometimes I've had a migraine afterwards but it's possible I was getting one anyway. Sometimes I've felt a bit rough afterwards. But it's a small price to pay if it helps.

Hope this is useful,& good luck.

DoubleT profile image
DoubleT in reply toteadrinker

Hello KateArn79, I just found your post and noticed it's from about 3 months ago, I'm just considering the same surgery in Berlin, but like you said it's a big step and I'm trying to get as much info as possible... I've read positives and negatives. Just wondered you went ahead with the surgery and if so, how you have got on since the surgery?

I've been having migraines for many years & I've tried a lot of medications from GP and the headache clinic but none has worked for me. The migraine attacks seems to have taken control of me. I had taken Botox twice on NHS (31 injections each) and that helped but was told that it can no longer be funded on NHS. Hence, I had to travel to London to get the Botox injection privately. This has greatly improved my wellbeing and almost migraine free. I'm trying to get as much information about the surgery in Berlin. Any information will be greatly appreciated!! Thanks

Di-a-monds profile image
Di-a-monds

Hi, I have Botox for migraine on the NHS. It has helped enormously, speeds up my recovery time. I still get migraines but can now cope with them, I recover usually within 24 hours to a point of being able to function, prior to Botox, it'd take days to recover! I've been going every 3 months, but have now just started to stretch this to every 4 months. I couldn't of coped without it.

jackiesutton62 profile image
jackiesutton62

Hi I have had 2 rounds of botox for chronic migraine. 31 injections 3 months apart. It has been amazing. I haven't had to stay off work apart from 2 days at the beginning. I am off all the drugs apart from blood pressure need and the occasional sumatriptan. Aspirin takes away 90% of headaches I get and they are few now.

I'd recommend botox. No side effects apart from a slightly stiff neck for a couple of days after injections. Headaches I get I can cope with. It's a revelation after 37 years of migraine sometimes lasting weeks. Good luck xx

troy04 profile image
troy04 in reply tojackiesutton62

Do you mind if I ask you for how long you have been taking Aspirin? I am a bit scared to take it on a regular basis as it can give ulcers - the ulcers can apparently appear (due to aspirin intake) anywhere in the digestive channel. Have you been warned by anyone? Quite often people have been asked to take aspirin in the morning - and if it is taken in empty stomach (I know it should not be, but sometimes unavoidable for some people), it could cause bleeding after a while - just wanted to know your experience.

jackiesutton62 profile image
jackiesutton62 in reply totroy04

I've probably taken it a few times a week for the past 6 months. Somebody on this site said their Nuerologist had suggested 3 soluble aspirin in coke to ward off a migraine. I don't take with coke as I avoid caffeine.

I only take it once in a day and only when required. I find it can take away a threatening headache. I do take omeprazole to protect my stomach as I used to have indometacin (a strong anti inflammatory) for hemi crania continua. I've just stopped taking that.

I've not had any problems with aspirin, much worse problems with the many prescribed drugs I've had to take. Many people take a dose of aspirin every day for stroke/heart risk so I think if I only take it occasionally I should be ok but obviously some people are more sensitive than others.

Kth40 profile image
Kth40

Hello, after suffering for years with dibilitating migraines, botox has given me some of my life back. It takes time for it to settle in and they don't completely go but they help in a big way. I hope it works for you if you go ahead with the treatments.

KateeB profile image
KateeB

Tried Botox 4 times. 38 injections each time . Very painful but everyone is different. Worked first time but no effect other times. I have found GON injection better . Try the Botox as some have had success. Good luck x

Poppyclaire profile image
Poppyclaire

Hi I've had chronic migraines for years & can get upto 18 a month. I tried several different meds but nothing worked so i was sent for botox jabs. I had 32 in my head & neck. The jabs felt like bee stings. Sadly it didn't work so i was sent for a 2nd round. It bought them down to 12-18 a month. Before that i had around 22 a month

I had hoped for a better result but at least it helped a bit. For those it does help that's great. We all react in different ways.

Margauxjean profile image
Margauxjean

I had Botox for 3 rounds. First round was a miracle-- no migraine for 3 months in summertime ( heat and sun are triggers for me ); second round lasted 2 months pain-free, and then the last round, one month pain-free but the headaches would not go away for a month. I had to take triptans etc. several times a day to barely function for a month till stabilization.

So happy to hear some have continued relief.

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