Chronic Migraine ruining my life

[pukbolt]

So I've had chronic Migraine for around 10 years, and haven't worked in that time either. Sometimes it gets a bit better for a few weeks but then it comes back. I'm under the care of a neurologist and have tried pretty much everything at this point including a few of the different CGRP medications (I was on the clinical trials for these) and nothing really works and worse some have had terrible side effects. The only thing I haven't tried is Botox.

Luckily the abortive meds do work for me but I am limited to how many I can use in a week or month and I never have enough so lose many days to pain and sickness.

Just posting in case someone has a miracle cure I haven't tried. I have tried a lot of supplements all the main one's like B2, Magnesium (can't do glycinate), Omega 3, Curcumin etc.

If you've found something unusual that worked for you then let me know!

I don't have an answer but feel you. I used to suffer with migraines for a couple of years and sometimes I would be bed ridden for a couple of weeks. The pain is like nothing else! I used to lose my vision and be sick too. Luckily for me they just stopped.
I was recommended a type of ear piercing - I didn't do it at it's mixed reviews and even an old lady recommended smoking weed as it was the only thing that helped her daughter. Again, I didn't do this but maybe dinner of the CBD stuff will work.
Again no real answers but I hope you do get one that works for you!

I suffer from chronic migraine too. Tried many prophylactic drugs with no relief but Botox has been life changing for me.Would not be working or functioning as a mum without it!

@didgeridid Thanks I've heard of the ear piercing but I met a few people at the migraine clinic who did it and it didn't work although I've read online of it working. Perhaps I should try it?

I have CBD oil and it doesn't do anything I think you probably need to use the psychoactive stuff which is mega bucks from private clinics and I can't afford it. I did try weed and it did help a bit but I found the minute I didn't smoke they came back badly and I don't want to be depended on weed, smoking it daily, I also hate smoking but consuming it in other ways didn't work. I wish mine would just stop, but I've had them since childhood and they just keep getting worse so I think that is unlikely.

Thanks I appreciate you replying!

Have neurology been through the new gepants with you too? Nerve blocks?

I'm a super responder to the CGRP injections, but before that I was on 27 days a month of migraine, so I absolutely get it.

Botox halved me to 14 days a month and reduced the severity of the attacks, so definitely ask for it asap.

@Lanymor Thank you that is good to hear! I think botox has currently been side-lined by the new cgrp drugs but they don't help me at all and give awful side effects. I'm hoping my neurologist will be open to trying botox for me next. I have heard it can take a few rounds to actually start working, was that true for you?

Not much help if you are young but the menopause stopped mine. I often used to get a migraine the day before my period. Other triggers were too many apricots, goid quality chocolate, airport fumes. I tried acupuncture. I had the zomig knockout pills. Also tried beta blockers. The tablets with paraceromol, aspirin and caffeine were a constant for milder migraines.

Daith piercings. I had chronic migraines for years, got a daith piercing in my left ear but not a lot changed. Then got it in my right ear and my migraines have never been as severe since. Went from daily migraines, to once a month or so for the last nearly 15 years. It’s only this year that they’re starting to increase in frequency, but still never as severe as they used to be.
Other things I do that help prevent them is wear blue light blocking glasses every day all day, turn all screen brightness down as much as possible (work computer, phone, tv etc), and take aspirin when I feel one coming on.
Hope you find what works for you x

@JurassicPark4Eva I'm on the gepant now but its doing nothing for my migraines and causing me pretty bad issues with my digestion and bowels. I never had any success with the injections or IV's on the CGRP meds either. I did get a nerve block about 8 years ago when they wanted to stop my triptan meds to check for medication overuse but again it didn't help although they were able to rule out MOH. I have an appointment next month and so will ask if Botox is still an option.

Did it work quickly to reduce the frequency and severity of your attacks?

I’ve had it every 3 months for the last 10 years and I think I had some relief from the the 1st round. I used to have 20+ headache/migraine days a month and panic if I didn’t have medication with me.I still have the odd migraine and headache but nowhere near as severe as previously.The best thing is, that there are no side affects apart from a smoothish forehead! I have to keep detailed diaries and see my neurologist every year or so. I really do recommend it as a treatment. Hope you get a referral.

I was the same as you. Tried Botox & CGRP. I was on 15-17 days a month.

HRT was the thing which worked for me. I now get 2 days a month and they're very mild.

I know when I need to up my estrogen because the migraines return.

If you're not at the right stage of life for that, you could try the combined pill?

Is there a reason you haven’t tried Botox?

I sympathise as luckily the anti-cgrp works amazing for me. I have nothing else if it ever fails though.

@Lanymor I'm already under neurology and I think the migraine nurses do botox at the hospital or they used to. Not sure how long I'd need to wait to get an appointment. I do the diaries and so on as well for my appointments with the neurologist but he seems to think one of the CGRP meds will work and I'm sick of trying them now.

Also a super high dose of riboflavin is supposed to be have better evidence than magnesium. Neurology recommended this.

But, ultimately it was stabilising my hormones which was my miracle cure. Botox actually made them worse.

I was told by my GP I couldn't have the combined pill because I have migraine with aura?

I don’t have any solutions.

I don’t suffer migraines but suffer with cluster headaches and understand the some destroying pain that comes with them and the affect on everyday life.

I use sumatriptan injections for relief.

I used to get migraine every Saturday it was so deliberating feeling sick and just really awful. Then I retired and I haven't had a migraine since. So I put it down to stress at work and the long weekly travel. I take magnesium just in case but I'm sure it was stress related. I hope you find something to help.

Obviously mine are cluster headaches but I do find heating up a wheat bad and placing over the pain helps relieve it.

I think just as I came to the end of all the old school preventatives the CGRP meds were coming out and my Neurologist seems to massively favour these drugs over Botox. I also did VNS and TMS which are devices to deliver magnetic and electro stimulation to the brain and a few different clinical trials.

I used to be on ajovy but it stopped working,now I am on Botox every 12 weeks and take atogepant daily.the combination seems to work well

Botox is still an NHS option so should be on the table. Had a small change in the first 12 weeks, and the initialr reduction was within the first 6 months with the longer term changes within the year. I did it for two years, but the 14 days a month whilst an improvement was still a poor quality of life which was how I ended up on the CGRP.

Ref the usual suggestions - I have both daith pierced, not a sausage of difference.

I'm in perimenopause and have developed hormonal migraine on top of the usual attacks 🫠🫠 but at least my GP understands you can have HRT and migraine without a problem, as I'm aware of women being fobbed off due to migraine.

I think the biggest improvement outside meds for me has been WFH. I control the light, temperature, scents and sitting potion of my entire working life and it's so important. Being exposed to things like my colleagues who used to eat with their mouths open (I have misophonia), cook tinned sardines in the bloody microwave, wear heavy musky perfumes or smell of unwashed bodies, and refuse to have lights off on a bad day despite pleading made life very hard.

Blue light blocking glasses are definitely worth a go, I use them on bad days now.

I've barely had a sick day with migraine in the last 5 years as I can use a triptan for every single attack now without fear of MOH. I also flip between frovatriptan and zolmitriptan because I burned through 3 different triptans to the point of them no longer working which scared the life out of me.

Also, if you can get hold of scopolamine patches for nausea, they are a game changer. There's an international manufacturing shortage at present but I have a few kept back for my cyclical vomiting attacks.

Yeah I do this for my migraines and it does help a little while I wait for the triptans to kick in. My initial diagnosis was for cluster headache many years ago.

I've had two bouts of cluster headache. It was horrific. I'll take my chronic migraine over that any day of the week. You have my utmost sympathy.

Have you worked out any food triggers?

@JurassicPark4Eva I haven't worked in 10 year so I can control my environment mostly,I do everything "right" and the migraines still come. I do feel bad it's all on DH's shoulders though. I don't get any benefits as he earns over the threshold and I do wish I could work. I was looking at blue blockers, I have the clear one's but was just reading they don't really work so I need to get a proper orange pair.

I use Eletriptan and Sumatriptan, I think I've tried all the various triptans and these two work the best although Eletriptan makes you very sleepy. I will look into the nausea patches you mention.