Botox

[Mary1959]

My g.p is sending me for botox injections to help my migranes. Has anyone else tried this? I'm a bit apprehensive about it. 😕

[Cat00]

Yes I've had botox for over six years, what are your worries?

[Mary1959 in reply to Cat00]

It says, sometimes it can make the migran e worse and trigger neck problems. It also says, you get bad migrane S at first, which should get better. Also mentions, a droopy eye. I'm also worried, I may have to stop my medication to see if the botox is working.

[Cat00 in reply to Mary1959]

Never had my meds stopped for botox, their goal is to stop your migraines not tell I'f its working as such.Botox can make your migraines worse and it can hurt your neck, I've had both. In order to stop the neck pain I get them to spread the neck injections out a bit in that area and this has never happened since.

Botox really is a slow burner in a way , you need 2 rounds, ie 6 months to tell if it's going to work. I had botox for 6 years, had to stop for childbirth/conception/breastfeeding twice and then had a two and half year break for the CGRP injector which ultimately failed so I'm back on botox. Just had my second round yesterday.

I've only ever had one occasion where my eyelid drooped but it wore off in 3 weeks. It would always look worse first thing in the morning and then it open up a bit more over the day.

Often the first three weeks can be bad but overall it greatly improves my migraines. Some rounds work better than others but overall it makes my life much more livable. It doesn't always help the frequency but it really helps the severity.

Compared to other preventions it has far fewer side effects. It also makes me look a bit younger!

[Mary1959 in reply to Cat00]

Thankyou for your reply, you've made my mind up to try it. I could do with my whole face doing to get rid of wrinkles. It's not till May so will let you know how it goes x

[Cat00 in reply to Mary1959]

I campaigned for Botox for nearly 10 years, by the time NICE allowed it I was pregnant so had wait more. We put off having children because I was so unwell and hoping for a treatment that worked but I was getting too old so we just had to go for it. So it is fair to say I am a bit biased, but I have been on 13 different meds and injectables and Magnetic devises, none of which worked. After the first dose my neck was so bad that I had to be convinced to have the second round, I'm so glad I was persuaded because that second round was bliss. Sadly every time it works on me my headaches go below 15 a month and they take me of it and then I nose dive, its so annoying I wish they would just leave me on it.

I would advice you not to do any heavy lifting, or vigorous swimming etc for the first couple of days afterwards because this can make things worse. It's also useful to know that your muscles will not be fully paralysed for at least two weeks after your injections and paralysed doesn't mean you can't feel them it just means they can't move, which is a common misconception. It's efficacy goes up and down but it's still been good for me, so good luck.

[Mary1959 in reply to Cat00]

Thankyou for the info, hope you get the treatment you need to help the pain x

[Sandra600]

Yes I’ve had it, unfortunately it didn’t work for me but I’m in the minority

[Mary1959 in reply to Sandra600]

Sorry to hear that. Thanks for your reply x

[Sandra600 in reply to Mary1959]

Good luck x

[Mary1959 in reply to Sandra600]

Thanks x

[Cara71]

I had one round privately, it made my migraine worse for the first 10 days or so and I had terrible neck pain which only exacerbated a pre existing neck condition. This has eventually settled. I decided not to have a second round at this point and am waiting to try another anti CGRP soon. I may go back to Botox on the nhs in the future. Good luck

[Mary1959 in reply to Cara71]

Thankyou Cara for your reply, I also have neck problems and have been having physiotherapy for it. I'm having it done on n.h.s but got mixed feelings about it. It's not till may, so I'm going to do more research. x

[Cara71 in reply to Mary1959]

you can ask the hosptial to not inject the neck area, I've already had that conversation with them should I have it again

[Mary1959 in reply to Cara71]

Yes good idea, thanks x

[Kindness-Matters]

Hi Mary, first off, try to dial down your anxiety, if you’ve ever had acupuncture it’s a little like that. You’ll receive about 36 little injections with a tiny needle around the forehead, above the eyebrows, scalp, neck - do a Google search for locations so you are more prepared. The most disconcerting part for me (had it 10 times) is because the injections are on your head and close to your ears, you hear a little crunching sound as the needle enters the skin, a bit weird. It is not painful, but you will feel it, you’re getting injections

The other thing I suggest is try it at least three rounds and be prepared for it to actually trigger a migraine within the first few hours-days - for some reason this used to happen to me and now it doesn’t. Try multiple times as it essentially ‘builds up’ in your system.

Also, be prepared to feel sleepy afterwards, but avoid lying down, prop yourself up on pillows and relax and take a snooze while upright, or the Botox can ‘slide’ out of position and give you a droopy face! Your head may feel sore, so if you’re able, perhaps pre-empt the experience with Tylenol/paracetamol.

Finally, expectation management, my migraines haven’t stopped coming - I have post-menopausal migraines - possibly less frequent - the biggest win for me is the severity of the pain has significantly decreased, thus helping recovery no end. (I’ve tried Emgality, Qulipta, Aimovig, Nurtec and am currently trialing Ajovy - paired with Botox and taking Nurtec as the abortive along with the Cefaly device for prevention and abortive has been my best cocktail.)

All the best!

[Mary1959]

Thankyou for your reply, it's very helpful x

[katiewalsh]

hi. I’ve not tried it but I’ve heard it helps some patients but not all. I’m sorry I don’t know the percentage helped. Also, my neighbor said her friend has found it very helpful. Hopefully others with more knowledge will reply. Good luck. Katie

[Mary1959 in reply to katiewalsh]

Thankyou Katie for you're reply, I'm gathering all the info, before I make a decision. I expect were all different but also share the dreaded migranes!

[Joolstom]

Hi Mary,

I'm on the list for Botox injections but have been advised by my neurologist that I'm looking at a 12 months waiting list.

Having had migraines since age 2 and hemiplegic migraines for the past 4 years I have tried almost everything with no success. Even Ajovy last December resulted in an allergic reaction so had to be removed from the programme.

My neurologist suggested an unlicensed drug from Germany which was originally for Parkinson's but the side effects and other conditions rendered it not viable.

As a positive a couple of good friends have both been on botox programmes and both have had great success with it. One of them was on a 2 yr programme with drastically reduced incidents of migraine, she recently moved onto Ajovy programme and again is finding it to have great success.

Good luck and hopefully I'll be joining you as a botoxer soon.

Take care

Julie x

[Mary1959 in reply to Joolstom]

Hi Julie, thanks for your reply. I've had text message from n.h.s saying I should get appointment with neurologist by 17th may, but I'm sure that could change. I think I'm going to have a chat with specialist about the botox. I've tried so many tablets, that botox is my only hope. I live in Sheffield, so don't know if it depends on where you live, how long you have to wait, hope it won't be long for you too. I've never tried Ajovy, but my g.p is pretty happy to try anything I suggest, so that might be an idea. At the moment, I'm on 75mg amitriptyline and propanolol, which help a bit I think, and help me sleep. Hope you soon find relief best wishes Mary x

[Shawnie]

Had 3 rounds about 4 years ago but had very little effect on migraine frequency. On the plus side I didn't have any off putting side effects....I'd say definitely worth trying. Good luck.

[Mary1959 in reply to Shawnie]

Thank you for your reply Shawnie, at the moment, I feel I'll try anything, having a bad time of migraines at the moment.

[Shawnie in reply to Mary1959]

You have my sympathy....I have had chronic migraine for 13 years.....and often months on end of 25+ each month....I have tried every drug available apart from new injectables. Like you, my migraine wakes me from sleep around 1-2 a.m.... Which adds to the misery. The only drug which has helped recently is Flunarizine, which I have been on for last 2 years. It has reduced migraine frequency and severity....might be worth a shot too if Botox doesn't help.

[Mary1959 in reply to Shawnie]

Hope you soon get relief Shawnie too, you're not on your own, sending hugs x