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!

Ooh remembered something else.

The Botox can be tweaked to you. I used to have horrific shoulder and neck pain and we all (GP, physio, massage therapists etc) thought it was a musculoskeletal problem.... Nope it was a symptom of my migraine. The botox in the neck and shoulders were the most amazing thing to ever happen to me medically, and I'm still feeling the benefit of it all these years later. The nurses have me more jabs in that area and more on my left side because my attacks were more frequent on that side - it really helped. So they can shift the jab sites and increase the number if you need it. I was having 42-44 at a time.

I'm actually considering finding someone to do just the neck and shoulder jabs for me again, as it's started to build up again recently.

The only thing I hated about the Botox was my frozen face. It's confirmed that I do not want my features frozen, as I lost my ability to scowl. Grrr.

Highly recommend looking at posture as well - reading or working with my head tilted down the way creates huge pressure on my neck which frequently triggers my worst migraines, so I have to be careful about doom scrolling and things 😂. Pilates helped a lot too. Didn't cure the migraines, but improved me in other ways which improved my attacks.

I don't think I have any and that is the general medical consensus now that it is more missing meals that cause them than specific foods. Perhaps if I ate a lot of dark chocolate or had a lot of caffeine I might tip the odds in migraine's favour. I did an elimination diet many years ago now and it didn't change anything but skipping a meal will trigger a headache.

I had chronic migraines for years. Saw a neurologist. He asked if I ever had any gut pain or bloating. I didn't really have much issue with that but he suggested I go and get tested for coeliac, an often missed cause of migraines. I cut out gluten and I've rarely have a migraine in six years.

@JurassicPark4Eva Yes I'm a bit worried about this as I don't even have any lines on my forehead and I'm worried about it feeling strange or looking odd and potential for muscle wastage? Also I did hear some people are worse on it and are then stuck with it for months in agony, similar to how I was on the IV meds. However I'm not sure I could get much worse so hopefully it would help.

@Bingowingsincoming Thank you, I do think there is a link between migraine and gut health but I have had a coeliac test and it was negative.

Thankyou.

I don’t think people understand unless they’ve experienced it. I’d never hate are of them - but apparently my description of being woken up like someone is stabbing a hot needle through my eyeball ball whilst my nose runs like a waterfall but yet feels congested - basically was text book symptoms!

But yes the pain is unbearable. It hurts to shut my eye yet my eye won’t stay open and I can’t touch it to hold it open because that hurts more.

Im on verapimil now and been on full lowest dose for a few weeks and I went 12 days without an attack. From 3-4 days a week for over a year (mine are chronic cluster headache).

But I also suffered hormonal migraines in my early 30’s with the flashing lights and although a different pain and not so intense I empathise with migraine sufferers because it’s a lingering pain with a lot more other symptoms and affects the whole head (cluster headache is just behind and around one eye)

Have you tried acupuncture OP? I wanted to come off all migraine related drugs when I was trying to conceive and so gave acupuncture a go. I was fortunate it was covered by private healthcare through work following a private GP referral. I was sceptical and really didn't like the thought of the needles but also quite scared of going med free without any support (as I had been having 6-8 migraines a month). I saw quite a big improvement after a few sessions. I found it strangely relaxing so possibly it helped to reduce effect of stress at the time...

That was about four years ago now. My migraines haven't returned to their previous intensity or frequency since (although I'm sure pregnancy and two years of breastfeeding are more relevant to that). I maybe get two a month now but had a long period of none. I'm actually considering starting acupuncture again or booking a series of massages because I do think my underlying stress levels in my body have quite a big impact on how susceptible I am to migraines.

Has anyone tried cranial osteopathy for migraine?

I’ve been suggested it for cluster headaches but at the cost it would be good to know if anyone’s had positive experiences of it!

I went through a period of getting 15-20 a year, previously it was 1 or two but they run in my family so maybe it’s an age thing for me. So disruptive, and I was missing work regularly and nothing seemed to work even Sumatriptan. I went on a health kick last year and lost 5 stone. What I also did was start a vitamin regime too (multi, biotin, collagen, vitamin d, psyllium husk, magnesium) and I’d regularly drink electrolytes (not so often now, maybe once a week). I’ve only had 3 migraines this year total! I told my doctor, and she said she thinks it’s because I’m drinking 1l+ water every day without fail. I’m in disbelief it’s that simple but so far so good. I hope you can find something that works for you.

Don't give up hope just yet!

I found Botox very helpful for my migraine. I've been lucky and the CGRP meds work for me. However now there are the gepants for you to try as well.

Have you tried a Cephaly? Or acupuncture? I found both definitely improved things, even if ultimately not as much as Botox/Aimovig did for me, but at the time they were really helpful. Especially if a migraine hits when you are out and about and you just just chuck an acupuncture seed in to tide you over until you can get home.

HRT has also helped if you are peri. I found every time I had a hot flush, I had a migraine. It's what triggered me into HRT.

Final suggestion - do you grind your teeth? I found my tooth grinding got so out of hand I had a generally painful face and head and it all merged with the migraine. Masseter botox is great and I've stuck with that even now I've stopped the migraine botox.

There’s a migraine group on Facebook called migraine sufferers who want to be cured. It’s achieved by changing your diet and is very involved but if you’re desperate it’s worth looking at.

Can I ask which type of magnesium people recommend? I think my migraines are largely stress related but I’d like to try anything that might help.

I see. Ok, well it made a massive difference for my mum. Definitely worth a try. Good luck. I have seen how miserable it is x

I was prescribed Epilim which is a drug for epilepsy. It really helped.

Acupuncture helped mine. Didn't stop them completly but reduced how many I got and how long they lasted. Was great in pregnancy too when I really suffered. I was very skeptical but it really did help, no idea how.

Ibuprofen and coffee stop the headache for me but I get silent ones mostly so have all the horrible spaced out feeling, confusion, struggling with words etc and tiredness but the unbearable headache part only a couple of times a year with I am very grateful for.

https://migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/

This is the best source for the info on supplements.

My neurologist is Stuart Wetherby who was previously the head of Migraine Trust when this guidance was first written. Highly recommend this organisation as a resource in general.

Done it. Didn't make an iota of difference to my migraine in any way.

Not a single food-related trigger, diet or lifestyle has made any changes for me despite over 30 years of migraine and following every single diet I've ever found recommended.

FODMAP identified four triggers for my IBS (wheat, yeast, peas and peanuts!) but nothing at all for migraine. Was worth it for that part at least, but the CGRP injections have now all but cured my IBS by slowing down gut motility!

Not strictly, there are a variety of risks which make up your overall risk of having a stroke. But you would need to talk to a specialist about it. I was under a specialist headache clinic in neurology in a hospital and they had a much wider knowledge about it.

If you've had CGRP then I guess you've been under a specialist ?

No but when I had migraine-type headaches I did find that if I had a sports massage and had my neck etc massaged I'd have a few weeks of relief afterwards.

I used to get tension headaches and then they turned into more migrainey headaches with nausea and occasionally I was actually sick. I was about 40 then. Since my periods completely stopped at the beginning of this year, they've gone. But if you are young, that isn't much consolation. A relative of mine used to get terrible migraines that hospitalised her on many an occasion but again when she reached menopause, they stopped.

When people moan about WFH, they forget this sort of thing. WFH has kept me in work all these years. I could go and have a lie down if I needed to and catch up on work later.

In terms of advice, mine were nowhere near as bad as yours so there's nothing I can suggest except maybe massage etc.

On any thread about migraine, people will ask about food triggers.

I've found neurologists are completely uninterested in them except for alcohol, caffeine and being hungry.

Lots of people crave sweets and carbs during prodrome and so think they trigger the migraine, but at the time of the craving the migraine is already underway.

One trigger for me was going for a run and then having a glass of red wine. If I made sure I drank plenty of water either side I'd usually be ok.

Interestingly I think red wine is now affecting my gut. I have mentioned elsewhere on here that I have had good results with Symprove for my gut. However, a couple of weeks ago when the weather cooled down I had a couple of glasses of red wine on consecutive evenings and my stomach started playing up again.

But it makes me wonder if taking a supplement for your gut would help? Anything is worth a try I think!

Another vote for Ceflay. I used that when I was pregnant and it worked quite well. It is also weirdly relaxing and sent me to sleep.

Pregnancy migraines were the absolute pits.

There's also a greater occipital nerve block. I found it horrific, but apparently it works really well for some people.

I don’t have a clear migraine diagnosis and so have tried a few things that didn’t work. Then tried daily Candesartan. It is only thing to have made any positive difference. Doesn’t stop migraines by any means, but it also doesn’t let them get up to the acute agony phase. I still lose a lot of days to headaches but now fewer of them are totally bed bound unlike how things were before Candesartan.

Second the daith piercing. I have hemiplegic migraines, was getting 3 ish a week. I had the piercing and I’ve only had 2 in the last 4 years.