Hardcore Migraine Sufferers Unite

Anyone know anything about nerve blocks for cluster headaches? (Basically, are they effective/worth having?)

I finally found good meds. Excedrine. Pop two pills and usually they subside.

Psilocybin and LSD appear to have promise with migraines/cluster headaches.

https://www.ncbi.nlm.nih.gov/pubmed/16801660

http://www.thedailybeast.com/articles/2014/02/05/longtime-sufferers-of-cluster-headaches-find-relief-in-psychedelics.html

Thanks all. Oxygen does help (though I sometimes wonder if it just delays the pain). Sumatriptan works - it works well/speedily as an injection but less so as a tablet (though I still think it has some value). I don't like to take it for long periods of time, though.

Shitting hell. Five cluster attacks so far today (two possibly rebounds from using Oxygen).

Have been pondering last week's "Doctor in the House" about Cluster Headaches. The premise: a GP spends longer than the ten minutes they would allocate in a typical surgery to consider an illness. The GP appeared to insinuate that the headaches were a "life-style" issue and that the treatment should involve a reduction in stress and a change in diet. No mention was made of the specific symptoms or the recommended treatments (Oxygen, Sumatriptan injections) - and there's definitely an argument that what was being shown wasn't strictly a Cluster Headache.

I've experienced Cluster Headaches for 26 or so years, covering a variety of stress levels (from not at all stressed to mildly stressed) and from "skinny" to n"ot-so-skinny" aw well as a variety of diets (all, for the most part, healthy. Found myself highly irritated by the suggestion that the pain is a result of my "life-style" ...

i've been getting what i've called "tension headaches" more regularly in the last few years. they feel like a hangover without the nausea

- pounding headache, often on one side
- neck pain/tension
- nasal congestion

usually lasts til evening. on some rare occasions it lasts thru the night and into the next day. they are awful but i have no idea what they are or how to deal w them :/

physiotherapy might help

Cluster headaches aren't typically tied to stress. They happen more often in people who smoke and drink (and supposedly, have "leonine facies"). I encourage my cluster patients to quit smoking and drink only in moderation if at all, but that's about the only lifestyle advice I give them. I'm not aware of any association with diet.

Tracer, your headaches sound like migraines -- unilateral and throbbing. Migraine often produces pain in the neck / back of the head (occipitonuchal pain) and autonomic symptoms in the face like sinus congestion. Migraine headaches aren't necessarily severe, and the associated migrainous symptoms (sensitivity to light, sound etc, and nausea or dizziness) can be mild and sometimes manifest mostly as fatigue and a need to rest. As long as they resolve completely, it should be safe to treat them symptomatically. You could see a doctor and try a triptan for acute treatment, or if you want to manage them on your own you could take a large dose of ibuprofen (800 mg) plus some hydration +/- caffeine and if possible sleep.

thank plasmon!

https://splinternews.com/why-working-women-with-migraines-suffer-in-silence-1820243253

The cluster headaches are about, two years to the week since my last lot.

At the point of finishing my last cluster, I was prescribed Sumatriptan and Oxygen and had the offer of a Nerve Block "next time".

I don't get on with Verapimil.

Any new developments in the last two years?

Not sure why I wrote "about" - I meant "back".

i have been getting what i term my "Saturday headaches". i attribute them to stress at work. they are truly terrible - i am floored until around 5pm no matter how many ibuprofen i take, coffee, water etc.

my working theory is that extreme shifts between stress and non-stress exacerbates them. for instance, the last one happened when i worked like crazy on a Friday and went straight to the pub afterwards, then zoomed home to put kids to bed. i only had a pint and a half. so it wasn't a hangover. but i think there's something about the whiplash of those two modes that is stripping my gears.

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