Anyone has tried all possible migrain... - National Migraine...

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Anyone has tried all possible migraine treatments without success?

Sybille profile image
19 Replies

I am on the last treatment I can try, not sure what I will do if it doesn't work. Anyone has had the same problem? Thanks.

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Sybille profile image
Sybille
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19 Replies
teadrinker profile image
teadrinker

What are you trying at the moment & what have you tried already? As well as migraine I suffer from chronic pain & was told 3 years ago by a pain specialist that I had tried everything and there was nothing anyone could do. I asked for a second opinion and have since been offered other treatments with some success. I remember the awful feeling of panic when he said that was it, but it wasn't.

My migraines still happen just as frequently but they are more manageable (thanks to botox). Life would be better without them but I know I can live with them.

Try not to think too far ahead and panic just yet.

Sybille profile image
Sybille

Hi, thanks for you message. I have tried averything over the past 20 year: Amytriptyline, Topiramate, Propranolol, contracpetive pill, coils, healing, acupuncture, osthopathy, homeopathy etc.. More recently I had a nerve blcok, it had absolutely no effect, and I am now trying Indocetamin. I am not too hopeful Botox would make a difference. What worries me the most right now is the medication overuse situation, I did a detox eith Naproxyn recently, it hasn't worked at all.

teadrinker profile image
teadrinker in reply toSybille

sounds like you've been through a lot. I didn't get any relief from a nerve block. It's frustrating about detoxing and not getting anywhere. I recently decided to give up chocolate again - did this before and it made no difference but I thought I'd do it again, just in case, and of course it's not changed anything. I am certain I get migraines from my neck being out of line, but treatment for this makes the migraines much worse & I just can't face trying it again at the moment.

Maybe you could try the botox? I was very reluctant at first. It didn't work immediately but was worth persisting with. Mostly can now get through a migraine with no or minimal medication(usually one attack a week), and get the really bad ones a lot less now, usually as the botox wears off. At least the botox means I can sort-of function instead of being crippled with the headaches.

01Jacqui profile image
01Jacqui in reply toteadrinker

Hi. I've done the A-Z too. Recently tried Mirtazapine - not sure if you've tried that one? The little research available say that it's good for neuropathic pain and it initially helped with my migraines - but not sleeping well and migraines returning while trying to sort out the sleep issue because of the medication has meant that I've had to come off of it. Wishing you all the best

janbrooks2009 profile image
janbrooks2009 in reply toSybille

i do feel so sorry for everyone who leaves messages on this site, but have been too ill toleave a reply till now...i too have been given a A to Z of pills that simply havnt helped my migraines,, i was on so many meds i had to go into a detox & what a awful time i had, infact walked out & have now complained to my care trust in my area...changed gps still no help so have booked a app in london for 7th of march for botox...& then because of all the meds, or stress ive lost most of the top of my hair, so have a app in manchester on the 8th at hair resolve...no ive not got plenty of money,,got to pay for it all myself.....good old nhs eh !!! lost 15ys of my life....will let yo know if the botox works for me i also suffer badly with fibromyalgia...but will have to live with it as the pills have crippled me & made me so ill

Sybille profile image
Sybille in reply tojanbrooks2009

HiJanbrooks2009, I have discussed Botox with my GP, it is simply not an option because Primary Care Trusts have now disappeaed and there was npo other way of getting it. I can't afford the Botox privately. Yes let me know if it works.

Pompeyfan profile image
Pompeyfan

Know how you feel. I've tried amitriptyline, propranolol, citalopram, hypnotherapy, osteopathy & been on Topiramate for over a year - just recently gone from 50mgs daily to 100mgs, made no difference but sticking with it.

Also tried cutting out the obvious caffeine, alcohol, chocolate, cheese etc in the past.

Done a bit of research on Internet just recently about Gluten & migraine & currently trying gluten free - if that doesn't work, seriously considering surgery at migrainesurgery.co.uk

Good luck, Sarah xxx

rosianna profile image
rosianna

have you been in touch with the NATIONAL MIGRAINE CENTRE? you can find them on face book.

Sybille profile image
Sybille

Pompeyfan, I don't think there is any pint sticking with Topirimate for so long, I tried for 6 months and then gave up. I did hypnotherapy as well! I will look into teh surgery but again, not too sure about it and probably can't afford it either.

Teadrinker, I can't afford the Botox. I have been in bed all day yesterday with one of te worst migraine of my life, extreme pain, vomiting (I never do usually). I have also given up on chocolate, alcool, cigarette, going out. I have a very strict lifestyle and diet but struggling more and more to do my yoga regularly and I am just about to quite work.

Rosianna, yes I got ot the NMC, thanks.

Than a lot for your advice, it helps.

teadrinker profile image
teadrinker in reply toSybille

Sibille

There are now guidelines on using botox - if other treatments have failed it's possible you may be able to get it on the NHS. I get mine on the NHS otherwise wouldn't be able to have it. The National Migraine centre would be able to advise, I'm sure.

If they are getting worse you need to see someone about it.

take care.

Sybille profile image
Sybille

Hi Teadrinker. I am surprised you already got it on the NHS, it's only been available for a very short time. Yes I guess my migraines are so bad, I have tried absolutely everything, there is a chance I get it on the NHS. I am giving the Indometacin a go, it makes me feel sick but at least I am loosing loads of weight!) if it doesn't work I will go back to the clinic. Who gives you your botox onjections? Do you get a bad migraine following treatment? This scares me after the terrible one I got on Tuesday. Ready to go back to work this morning, I hope I willl make it through the whole day!

teadrinker profile image
teadrinker in reply toSybille

Sybille

Sorry for not replying before, computer has been playing up. I have my botox at NHS pain management centre (in Nottingham). Following the injections, if I'm feeling well & in not much pain when I have them done, I have no problems afterwards. Sometimes do get a flare up of pain (which can go on for a while) or a bad headache afterwards but it is worth it for the relief I get once it's settled down. It can take a few days to settle, at worse 3 weeks, but it's not 3 weeks of migraines, it's 3 weeks of pain in other places I get pain. I usually get 8-10 good weeks, sometimes a bit more.

I hope you made it back to work. It takes me a few days to get over a bad attack, usually feel very tired & dizzy & not all there.

Sybille profile image
Sybille in reply toteadrinker

Hi, thanks for this. At the moment I am struggling with the side effects of the nerve block, neck and head pain. Also suffering form side effects of Indometacin, bad sickness, dizziness and extreme tiredness. So feeling a bit stuck, must make an appointment at the NMC.

MonicaG profile image
MonicaG

Hi Sybille,

Just wanted to say sorry to hear how much you are suffering at the moment, I do hope you find something that works for you soon. I've had really frequent migraines this year, most are treated well with the triptans but I get occasional ones where nothing touches the pain. I find the fear of getting a bad one so difficult, as well as the practicalities of managing it all with work, I do sympathise. Hope you managed ok last week. x

Sybille profile image
Sybille

Hi. Thanks Monica. Yes I know the fear of the pain and worry about work! The Indometacin seems to work, I haven't taken a triptan for 5 days but I am feeling very sick and dizzy, feeling like I am not recovering fo this weeks terrible migraine.

Hi Sybille

Have you seen a neurologist or made an appointment at The National Migraine Clinic? It might be a bit of journey but sounds like you are desperate.

For me it was just

Same amount of sleep every night - don't lay in on the weekends either

Eating three meals a day

Now I always know why I have a migriane - like I forgot breakfast.

Good luck x

Intolerant profile image
Intolerant

Giving up wheat is a good idea for everyone! Read a book called Wheat Belly by Dr William Davis. It is available from Amazon and makes for some shocking reading. I gave up coffee a long time ago and albeit not perfect I do not suffer nearly as much as I used to. Propranolol was fantastic for me but I had to stop taking it when pregnant, now on antidepressants for post natal depression which seem to work too, also keeping regular sleeping hours has always proved the best medicine for me.

Sybille profile image
Sybille

Hi. Thanks for your message. Yes I do all this, my lifestyle and eating habits are very strict!

woodlog profile image
woodlog

I had chronic intractable migraine for fifty years, as did several on my mother's side of the family. Treated with dozens of horrible drugs, none of which worked without huge side effects. Topiramate seemed to help but gave me several kidney stones and played havoc with my memory and mood. I had nerve blocks and a nerve stimulator but they did very little to improve things. By sheer chance a new GP put me onto Amlodipine 5 mg and a week later my migraine more or less stopped. I've met some others who've had the same experience but the consultants remains sceptical. It's such a cheap and hazard free treatment I think everyone should try it. What have you got to lose? Migraine is a recipe for despair' I wish I'd tried Amlodipine when I was young. It might have changed the way my life has turned out!

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