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There are occasional migraine threads here - and they've offered some good insight. I'm currently getting crushed by a long-running wave of chronic attacks and have just failed my third preventative, which leads to my question:
Has anyone managed to get onto a CGRP Inhibitor? How is it? And how did you get it prescribed? Especially if you are in Scotland!
Any updates on success people are having or things they are trying would be welcome. I need a little hope here...
Chronic sufferer on CGRPs here (monthly Ajovy)
First of all, I literally fell your pain. It's massively shit. I'm sorry that you're suffering.
Are you still in GP care, or have you been passed over to Neurology?I don't know how it works north of the border, but can relate my experience in the Midlands.
What preventative have you tried? I'm guessing beta blocker, candesartan, amitriptyline or something like that? My understanding was that if you have tried 3 different preventatives and are 15+ days per month that should 'unlock' the next stage. However, I had to really push for this, and it was a battle, including a referral to IAPT, as the GP decided I had medical anxiety. Turns out I have a chronic condition that is hugely impacting my life. Who knew?
I had the above, then after a (long, sorry 🙁 ) wait for a referral got under the care off the neurology dept in the local hospital. First port of call was Topirimate, which apparently works for about 50% of people, but didn't fit me at all. Then a nerve block, which worked brilliantly for about 3 days. After that, on to Botox. This was really successful for around 4 treatments, however the pressure on the service meant it was often twice the time it should be between intervals. Due to this I was moved to Ajovy, as it could be administered at home by me, and it's been a significant improvement. I've gone from easily rinsing both packets of triptans I had every month (~18 migraine days) and taking a LOT of dispersible aspirin to sometimes having a some left in the first packet of 6. I've had 3 so far this cycle and my next jab is due the 20th.
I'm not going to bang on about triggers as I'm sure you've investigated those. I've cut out all caffeine, beer, chocolate, aspartame, and a few others. Sleep is critical for me so I have to make sure that is sacred.
I'm also on Amitriptyline, and take vitamin B2 and high dose Magnesium, as recommended by the consultant.
I don't know if that is if any help, but please feel free to ask questions either here or via pm, and I'll happily help where I can.
Stick with it dude, it's a long road but it will hopefully get better for you.
Doc and migraine sufferer here...
Thankfully as I've aged my frequency has decreased, so I'm just taking 'as required triptans'..
One thing that really helped me, given I'm an 'intensive frowner', was botox in the forehead. I pay for mine, which at about £250 every 4-6 months' isn't that cheap, but provides good muscle tension releif. It IS available on the NHS, but only once seen in secondary care, so you may think the benefits of paying outweigh the wait issues?
If you do go to a botox/aesthetic clinic, jsut say you want the "three frontal areas" for wrinkles. It's the same ruddy injection sites, but they are not allowed to inject for migraines, but ARE for beauty reasons... so you have to wink and say it's for wrinkles!
DrP
Thanks Submarined and DrP.
I have a question about Botox as I think that is next on the list for me, having failed Amitrytaline, Propranolol and Candesartan. I'm convinced my migraines are metabolic as opposed to muscular-skeletal - is botox only applicable/effective when there is a muscular-skeletal component?
I know Topamax is likely to be offered as well, but as Candesartan totally shut down my brain and cognitive capacity (had to stop driving), I have no intention of trying it - too risky in a thinking job...
My GP is decent, to be fair, but overworked, so I need to keep pushing to get to the next treatment option.
I've been careful for years with triggers (very little gluten, basically zero dairy, no booze, etc) and sleep and have had success with the ketogenic diet - but I'm in such a hole just now that I need help to dig myself out so that I can go back to keto. The fatigue is real - I'm sure you know the phenomenon 🙄
In case of use:
https://www.nationalmigrainecentre.org.uk/migraine-clinic/funding-your-appointment/
£259 for initial apt, £159 follow up.
Lots of info on site, the organisation was mentioned in R4 Whatsup docs on headaches, I have no personal experience.
Good luck whichever route you take!
In true STW style, i'll deviate from your thread slightly and share my experience......well a woman who works for me....her experience.
She has suffered for years with them to the point she had a hole drilled in her skull to relieve pressure which didn't work. Anyway, a chance meeting at a conference with a Chiropractor and she has been migraine free for the last few years. He did something to her neck (as in cracked it or whatever they do) and said 'you'll never have a migraine again'....so far so good.
I don't know whether this is something you have considered exploring?
I'm convinced my migraines are metabolic as opposed to muscular-skeletal - is botox only applicable/effective when there is a muscular-skeletal component?
No, not as far as I'm aware. It was explained to me as it acts on the nerve receptors on various areas around your skull (I had 30+ injections per session) and reduces some of the pain transmission. There's definitely a metabolic aspect to my pain (the failsafe trigger for me is... Cycling.)
Apparently Topirimate can have great success, i wouldn't discount it, but just be ready to stop off you experience any severe side effects (I did.)
I don't know whether this is something you have considered exploring?
I hope not, and it shouldn't be. Neither trepanning or quackery have any proven medical benefit, other than the very powerful benefit of placebo.
I found my trigger - marmite - by accident after going on a diet which inadvertently cut it out (no toast for breakfast). Incidence down to occasional bad headaches from 3 days per month. Oh and that time I took Feroglobin for iron support. A few days in and I woke up with I’m going to be sick levels of pain. It’s based on malt extract and 400% of the vit B12 you need for each 100% iron so I suspect that’s the connection. I’ve not seen anyone blame B12 before but I’m careful to avoid too much of it now.
Apart from that migraine physio has helped in the past and I’d definitely recommend.
I'm convinced my migraines are metabolic as opposed to muscular-skeletal - is botox only applicable/effective when there is a muscular-skeletal component?
I'm not sure on this either.
I know my triggers can be tiredness, stress, dehydration, bright lights, AND I know that I can feel forehead tension.. So the Botox helps with teh forehead tension, which might be triggered by a few other components too.
It works for me.
And yeah, avoid trepanning and chiropractors..
DrP