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!

Have you tried Gabapentin? GP prescribed it for another condition and said, as an aside, that it might also help with my migraines. And it does! I've been taking it for about 4 years now and the migraines have reduced from several a week to once every few months.
(Botox didn't help me.)
Edited to add: I take Gabapentin at night only, and the side effect of drowsiness is gone by morning.

I’m the same but have also had nerve blocks and Botox that haven’t worked as well as all CGRP and gepants etc. only thing not tried is HRT.

so fed up with it all so no advice to offer just sympathy

I haven’t had a migraine since I had a Mirena coil fitted six months ago, would get them at least twice a week before that.

@Lanymor i’ve had chronic migraines for about 19 yrs now and so far other than triptans the only thing that helps is botox. I’ve tried the gepants and CGRP injections but no effect on me. aim trying a nerve block too in a couple of weeks to see if it further helps. I was on the NHS WAITLIST FOR BOTOX FOR about 16 months and for the nerve block about 7 months.

I'm sorry to hear that OP I have migraines too, but I've never found anything that helps unfortunately x

I am going to ask about botox at my Neurology appointment next month as I'm done with the various CGRP type meds, tried them and they don't work for me. Apparently they work for less than half or sufferers and when that person has chronic migraine the success rate is even lower.

I did try Gabapentin many years ago and it didn't work well enough for me to stay on it. I'm glad it worked for you!

Heya. Hope you've had some improvement. I came across your post because chronic migraine has been ruining my life, too, since the spring.

I noticed you've tried B2 and magnesium but not COq-10. They all work on the same processes and work best taken together. Coq10 made a noticeable difference but also gave me insomnia so I had to cut back to 30mg every other day to be able to sleep. Still helped - I didn't feel like a complete zombie all the time. I've managed to build up over the last three months to 100mg a day, which is the lower amount studies use for migraine (they go up to 300mg - my dream goal). B2 needs to be taken in ridiculous amounts - 400mg - so standard supplements don't cut it.

Useful and reliable source: https://migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/

My son went to a homeopath after having cluster migraine headaches and after trying every type of standard migraine medication. It was the only thing that worked for him - I would give it a try if nothing else works for you.

I've been taking all the migraine supplements in optimum doses for a few months now so the B2 400mg (which I've taken before), 300mg or higher of CoQ10, 600mg elemental magnesium (studied for migraine), Curcumin, Omega 3 but so far there isn't any improvement yet. I am also getting Botox at the hospital and have had 2 rounds but no improvement yet there either. I am also doing vagus nerve stimulation and have even recently added a micro dose of Lithium Orotate at the advice of a naturopath to calm my brain down. Still waiting to see if it does anything.

I've not had a good nights sleep in weeks as I am getting regular migraines waking me up in the middle of the night, most nights really. It's just a pattern my brain gets into at times.

I am currently looking at TCM and Acupuncture in my local area as I might try that next. Other options are going private for low dose naltrexone, medical cannabis, ketamine or psychedelics probably not that keen on the last three.

I will try at least another round or two of Botox before doing anything else.

It's kind of depressing to see this post from a year ago come up and see that I am still in the same boat 😞

I have spent a lot of money with Homeopaths over the years for my migraines but never had a good result from it unfortunately. I did get some benefit years ago from one for seasonal allergies but I now understand I probably just grew out of it. I am glad it worked for your son. My initial diagnosis was for Cluster headaches although it was later changed to migraine. I am sure I have a sort of hybrid condition which is why it is so hard to treat. Long may your son be headache free!

If there's a possibility this is a mix of cluster headache, the treatment is different from migraine - high flow rate oxygen and injectable sumatriptan. Have they tried that for you yet?

I had a couple of bouts of cluster headache lasting a month each time and am so fucking relieved it's not stuck around for longer - utterly horrific experiences.

@JurassicPark4Eva No they haven't I would like to try the oxygen and a non oral form of sumatriptan as often the tablets don't work so well. I wonder if it is a hybrid form as I will get periods where I am affected at the same time every day like at the moment it is 3am I wake up in pain. Having said that I also get aura and basilar migraine symptoms.

My condition has been described as complex refractory migraine which might take the variety of presentations I have into account but I seem to be stuck in a migraine with aura treatment pathway in the NHS for example I had a gamma core (vns device) that helped but they took it off me because now you can only get it if you have are a cluster migraine sufferer as its not as effective for migraine, meanwhile none of the typical migraine treatments work for me!

@pukbolt I’ve tried medical cannabis for my migraines but it did nothing for me after trying Gepants , CGRP injections and every preventative under the sun in the last 20 years I’ve been having 12 weekly Botox for the last 18 months and for the last 12 months GON injections every 12 weeks ( so Botox then 6 weeks later GON, then 6 weeks later Botox etc)
about 10 days after having the GON I do start to feel a small difference which lasts about 2.5 weeks

Sorry I've not had chance to read through the other messages but HRT really worked for me. Not sure how old you are but if you are peri it can't hurt to give it a go?

I take propanalol as a preventative as recommended by my GP, has this not been discussed?

Is there any pattern to where you are in your cycle?
Has your ferritin level been checked? Mine are much worse and more frequent when I have low ferritin.

OP has been through all the options up to and including treatments only available via neurology - propanalol is usually the first GP medication prescribed, not the last....

If you're more responsive to cluster treatments, could you get a sympathetic doctor to prescribe for a gamma core vns device that you buy yourself? It feels very unfair that they took it from you.

This probably isn't helpful, but mine peaked during the peri menopause (up to 14 a month) I could have quite happily bashed my head against a brick wall at times. They have lessened to three or four a month as I am heading to menopause. HRT helped quite a bit.

Candestartan has helped me I think my migraines must be autoimmune related
THis time of year, stay out of the sun and don’t even sit near the window at home, etc
OP is this part of a wider health picture that you have going on maybe- eg hyper mobility I the neck and spine can cause migraines, I recently learned. Might there be another angle to try to come at this from?

Daith piercing its on an acupuncture point still get them but last 1.5 days not 5

I’ve just had my ferritin levels checked because of this but it came back at 45

A GP can prescribe sumatriptan injections. I was given them because I vomited up the tablets.

They're relatively expensive compared to the tablets so you have to have a reason to have them