Hardcore Migraine Sufferers Unite

sounds like you are onto something -- how does your nervous system feel? are you sleeping? are you jumpy? i haven't had a migraine in a long time but have grown increasingly (painfully) aware of the relationship between stress and somatic/physical symptoms :(

i never, ever get enough sleep but it's not insomnia it's just staying up too late :/

IANAD but if you make an effort to get enough sleep, it could really make a difference and maybe even solve your prob!

yep :/

Change in pattern does give me migraine attacks. So days off: lots of migraine. Go on a day trip? Migraine. It's not food but stress that gives me migraines. :-(

Hmm. Had a nerve block in the hope of seeing off Cluster Headaches for the next 8 weeks or so (the rest of the episode) ... and it worked ... for 36 hours.

:-(((((

today's my day for complaining on ilx. migraines suck. i've had this one about 24 hours, which means i've got at least 12 to go.

I get them very rarely, and when I do they are largely silent - I've only ever had one full-blown migraine, so at least I do know what's it's like to have a real one, but I had an intermediate one on Wednesday for the first time in maybe 3 years and it fucking sucked. It started off as a silent migraine with my right eye just completely aura-ed out couldn't see anything but shimmering then that wore off and I felt like someone was stabbing me in my eye for a few hours til it stopped hurting enough I could go to bed. I had some cocodamol and weed and turned all the lights off which may or may not have helped at all. Woke up the next day with a sore eye but it was gone by lunchtime thank fuck.

I get them once every week or two. i used to take imitrex but it made me have them three or four times a week so now i take nothing. it's not really sustainable, i need to start on something to prevent them.

Having a quick scroll through this thread ... Plasmon is a hero!

UK question: are Sumatriptan injections and Oxygen cylinders available? Bit worried about Brexit and the Covid world breaking me during the next cluster ...

What is plasmon? is that Aimovig?

Plasmon is a contributor to this thread. A neurologist, if I recall correctly? But genuinely appreciated.

Oh, I see. I should have checked the thread instead of googling "migraine plasmon" - everything that came up was aimovig-related, so I was hoping you'd found a miracle cure.

Might be worth saying what is going on for you and seeing if others have ideas? Equally, understandable to not say.

(Apologies if you have done and I've not clocked that).

I get migraines without aura every 1-2 weeks. Up until I was 20 or so, I'd get them mostly on weekends, then I got put on imitrex and they fairly quickly went up to 2 a week, which gradually increased to 3-4 on bad weeks. I was fairly sure the imitrex was to blame, but if I tried to go off imitrex the migraines would be so bad I'd end up taking it eventually. Finally went to a headache clinic, where they diagnosed medication overuse headache and helped me get off the imitrex. They also gave me some supplements - SAM-E and boswellia mostly. So now I'm back down to a migraine every week or two, and I don't take anything for them, just wait them out. They last about 36 hours usually. It's better than it was, but it's not sustainable and I need to take something to prevent them.

Other things I've tried - birth control, which decreased the headaches but made me intensely anxious, also I'm getting to the age where it's not that safe to take it. Beta blockers - made me feel weird and didn't work. Magnesium - makes my heart skip.

Things I don't want to take - Topomax. I teach English and French for a living; the last thing I want is a heavy-duty drug that makes you forget words.

That sounds rough Lily. I really hope you find something that works.

Hello. Can understand not wanting to use Topomax (Topiramate). Hope someone here has ideas ...

Thanks! Honestly I'm still so grateful not to have them several times a week anymore, and the actual migraines could be a lot worse - they don't make me throw up or give me a lot of weird side effects; they're mostly just pain. But it does make it hard to hold down a full-time job.

Highly niche question: is there an optimum place for injecting Sumatriptan for Cluster Headaches? I'm thinking in terms of speed, effectiveness and lack of injecting pain. The instructions suggest the thigh (and the illustration shows the right thigh ... which I realise I have always used).

i don't know but i got prescribed sumatriptan pills a few weeks ago, and today i felt one coming on, i took a pill, pottered around a little, took a 15-minute nap, woke up, and.... it was gone?! could have been a number of factors (was it really a proper migraine coming on; was it the paracetemol i took; was it a mild one; has the fact i haven't been drinking coffee for two weeks helped) but i'm going to take the W

The Sumatriptan pills are still working for me, pretty much like clockwork. it's astonishing. the only problem is that they take almost exactly two hours to have any effect. so that's a big part of my day still fucked up.

My doc has now recommended I try taking Propranolol (lol) prophylactically, every day. Which I am doing. Sadly in the first 10 days of taking it I have had 3 migraines, more than my usual average :(

That’s good to hear. Sumatriptan has been working well for my partner too. Also: quarterly Botox shots have really reduced even the onset of migraines.

!! I will ask about this. Also about the nasal doses and/or injections of Sumatriptan. Also about the O2. And apparently there are other prophylactics. Though maybe Propranolol takes a while to build up? Not sure about this.

I find Sumatriptan injections incredibly effective for Cluster Headaches, although can't always take as frequently as needed. They work in a few minutes rather than an hour or so.

Oxygen can also be useful though I've sometimes wondered whether it's sometimes just delaying the inevitable rather than aborting the headache completely.

If migraine rather than Cluster Headache there is a new medication in the UK - I think you have to have kept a headache diary to be evidence your need.

I have never really understood the difference. My GP has never introduced the concept of “cluster headaches” to me. I don’t get auras but I do get congestion, light sensitivity and occasionally nausea.

I need to try and fail Topomax before I can get approved for Botox. I have been putting it off because I'm scared of all the Topomax side effects, which include brain fog, forgetting words, and kidney stones.

Tracer - might be worth looking here, if you haven't already: https://ouchuk.org/

Lily - those side-effects always sounded too scary for me and (rightly or wrongly and not a medical professional) I've always turned it down and I've always had that decision respected.

Thanks djh. I took the quiz and it says it thinks mine are more migraines.

It's not that the decision isn't respected, it's that you don't qualify to have certain medications covered by insurance until you've tried and failed a certain number of types of medication that are cheaper and more common. I haven't tried enough preventive meds yet to qualify for Botox or aimovig, so my reluctance to try topomax is really what's standing in my way.

That sounds hard-going. Was writing from a UK perspective where there was a bit of pressure to take it but managed to argue against it, as the symptoms would feel intolerable re work.

Well I'm on Propranolol (lol?) and no migraines for three weeks. So that's pretty good. The problem is that they're beta-blockers, and they are making me very... tired. When I go for a run my legs feel soooooo heavvvvvy. And I gotta get at least 8 hours of sleep, my normal quickie sleeps are not cutting it. So I'm kinda not really happy about that! Also not happy with literally taking a pill every day for the rest of my life? I was hoping I'd be in my 60s or 70s before that stuff kicked in

Would tolerate taking a pill everyday but would struggle with something that made me feel sluggish.

well i shelled out for a private appointment from the National Migraine Centre. they are going to put me on a different triptan - Eletriptan, which last longer and works faster. They are also recommending that whenever I take a triptan I also take 900mg of aspirin, two paracetemol and 10mg of Metaclopramide , which will act to flush the triptan away from my stomach and into my bloodstream more quickly. I am excited!

They are also going to wean me off the Propranolol, which as far as I can tell does nothing for me apart from make my legs feel heavier when I go for a run. However they do say I need something preventative, which they say for me will be something called Candesartan, which is apparently safer than some of the alternatives which can also make you groggy. idk man

They also said my previous dosage for Sumatriptan was too low, that I was taking an amount that would be prescribed for a teenager ¯\_(ツ)_/¯

I'm not a fan of triptans myself. I took sumatriptan for years and it gave me rebound headaches and made me feel super weird whenever I took it. Hope the new one works for you though.

Now they've got me on Ubrelvy, which is new and expensive and also seems to trigger rebounds, though apparently that's very rare and I'm just unlucky. It doesn't act as instantly as sumatriptan, but it also doesn't have any noticeable side effects, which is really nice.

That said, I'm home from work today because my migraines don't seem to want to respond to meds this week. It's been a relatively good couple of months so I was due for it.

sumatriptan has never worked instantly for me, at least not in pill form. i can usually time it to like 2.5 hours on the dot. no side effects, really magic, but day still half ruined.

Sumatriptan started out being pretty instant for me, but as my body got used to it, it got much slower and sometimes wouldn't work at all. At one point I had the injectable kind in case I needed it to be fast-acting. But whether it worked or not, it always made me feel slightly poisoned. Glad to hear there are people it doesn't have side effects for.

I've got Sumatriptan injections for Cluster Headaches and they really work (unless I have more than two headaches in a day and so can't take).

I've an acquaintance who takes Eletriptan (Relpax) for migraine and it seems effective at treating pain. They recently tried a new injection (not sure of the name) which reduced the headaches but had loads of side effects on their stomach. In the UK and they had to previously have tried 3 different treatments before they could try the injection.

yeah there’s also something called like… anti-CRG? something like that? that you can only have if you’ve tried all the other shit.

https://www.nationalmigrainecentre.org.uk/understanding-migraine/factsheets-and-resources/anti-cgrp-treatment-for-migraine/

It depends, at least in the US. Ubrelvy is an anti-CGRP medication, and I didn't need to fail all the others to be prescribed it, but if I want one of the preventive ones like the aimovig shot, then I will have to try topomax and an antidepressant first.

what was it like?