[Closed] Migraines, anyone else a sufferer?

And I can't work

I've had two bouts in my life. The first I'm pretty sure was environmental. The second I don't know, it came on suddenly and stopped equally suddenly several months later.

Over-the-counter painkillers didn't make a jot of difference. The only thing I found that touched it was Imigran.

Oh, and, sympathies.

A bad headache is not a migraine any more than a bad cold is the flu. There were moments I thought I was dying, and moments I hoped I was.

Thanks, literally can't do anything and when you have a baby and a 2 year old doesnt go down well

Use to suffer really badly with them, rarely get them now. A severe one had me curled up a ball in a dark room candle light would be too much. Cocodamol helped keep mine under control, but not always sleep was always the best remedy

Sleep is amazing but finding the position lol, now that is hard

Mine last 60 hours. Almost to the minute. They go through various phases of pain, nausea etc., so much so that I can tell what's coming next. I very, very, rarely get any of the warning signs like the jaggy vision.

Nothing really knocks it away, though I was getting decent results with Migraleve for a while. My best temporary relief comes from hard exercise. I don't know if it's the additional blood pumping through or something else but a hard-ish ride or run would suspend the pain for a while.

When it's really bad, I consider just banging my head on a wall to see if that would knock me out.

Light doesn't bother me and I'd mostly just carry on working, almost as a distraction. Noise is different. I am hyper-sensitive and earplug/headphones become very useful.

They've been increasingly less frequent since I gave up work though.

Sleep is amazing but finding the position lol, now that is hard

Horrendous as movement makes me want to puke.

If I wake up and feel one coming on I get some food and coffee and paracetamol inside me and get outside and get some exercise. Fortunately I'm a gardener so that's fairly easy to do. Sometimes the headache will linger most of the day but it's much better than when I used to stay in bed. I don't get them as much now as I'm more aware of the causes, stress, tiredness, chocolate and alcohol etc.

Went through a six month period in the late 1990's of getting them three or four times a week. Now its once a year maybe. A bang on the head will start one though! Migraleve kills it if i take one pink one as soon as my eyes start to go funny.

I used to get them a fair amount - not too serious, nothing like as bad the OP, just the jaggy vision for about 30-45 mins, and then a dull headache for the following 24 hours. Since I've been working from home I've been getting at least 30min more in bed, and I've also pretty much stopped drinking caffeine. And the migraines have gone (touch wood!)

This one was building from Tuesday and then when my daughter's birthday was out the way I went to bed, woke up in the midget of the night with the mother of all headaches.
Tried to sleep it off but missed the triptan window which usually works

Coffee, ibuprofen, paracetamol, loads of water!

My wife suffers from chronic migraine, when I first met her it wasn't uncommon to be suffering them for half the days in a month. After years of different treatments the following have been found to work for her, quarterly Botox injections around the head and neck and Maxalt Melts for when an attack starts (also prescription strength co-codamol), she still gets them but thankfully the really bad multiday attacks are quite rare now.

I haven't had a bad one for a while. I had a really thick head for most of last week which thankfully didn't escalate.

I never found a remedy. Codeine and darkness is the best I could do.

I've had one proper one and I can honestly say I do not ever want another. Full photophobia, flashing lights, blinding and crushing pain with constant nausea. Imigran in the cupboard. I have no idea what set it off since I am not sensitive to anything.

Sympathies OP, I hope you are feeling better soon.

You have my sympathies, I occasionally get minor ones, MrsMC gets some humdingers usually related to stress and/or hormones. She usually recovers after throwing up and a couple of hours sleep.

woke up in the midget of the night

Though this needs further explanation....

Been a sufferer for 20-odd years. At one point I was getting at least one a week; had mri scan and other investigations, was put on ssri and given tryptans which helped with severity if not frequency.
They reduced massively in frequency when I started wearing glasses despite my prescription being pretty weak (0.25 & 0.5).
Nowadays I seem to get them every couple of months or so, in runs of 3 or 4 then nothing for a while.
I get the aura, then lose vision completely for a while. If I can get some Co-codamol in me along with either a really strong coffee or caffeine energy gel before the next phase I can shorten the overall duration massively although rarely actually stop the migraine itself. Ibuprofen makes it far far worse!
Next phase is the headache starting behind my right eye, as if someone <span style="font-size: 0.8rem;">is trying to break out of my skull from inside. This gets worse with movement and makes it really hard to sleep as it feels like any pressure on that side of my head is agony. Vision tends to slowly come back leaving tunnel </span><span style="font-size: 0.8rem;">vision for a while along with light sensitivity.
If it’s a really bad one, I sometimes get complete numbness down my left side, starting with my fingers and extending up my arm and into my face, a bit like I’ve had a local anaesthetic.
Headache usually lasts anything from 3 to 12 hours and the longer it goes on, the more I am wiped out after.
A ‘good’ one, caught in time with medication and rest in a dark room might put me out of action for half a day. A ‘bad’ one can see me useless for 3 days.
They are truly awful and no-one who has actually suffered a proper one will ever confuse one with a ‘normal’ headache. They are only similar in the same way that a grazed knee and a broken femur are both leg injuries…</span>

I get visual ones from time to time. Usually they are a jagged shape with rainbows round the edge. The centre of the shape gradually goes like frosted glass. Think I'm quite lucky as it doesn't hurt at all - just inconvenient.

The worst bit is the nausea after it, several hours of that mouth watering feeling you get just before you puke.

I occasionally get classic migraines. Flashing, lights, visual distortion, then headache, the depressed mood for 24-48 hours. I think my trigger is stress, or more accurately coming out if a period of high stress.

About 2 years ago I had the visual disruption last overnight (rather than 30-60 minutes). Went GP, got referred to A&E, junior doc misdiagnosed stroke, emergency neurologists over-ruled, actually migraine with unusual symptoms

Now have sumatriptan, which I take as soon as I get the light show symptoms. Works for me, much reduced impact. Neurologist told me it was important to break the cycle or migraines will get worse as brain "learns" that a migraine is the right response to a particular stimulus - in may case seratonin, dopamine imbalances

Though this needs further explanation….

Especially as it's with the mother.

FWIW,

My symptoms were very similar to mattbee's.

Totally out of the blue I got a curved flashy zigzag in my vision. Gradually moved from the edge to cover the centre of my sight. And take it from me, sitting on comms on World of Warcraft going "sorry folks, I'm going to have to drop off I'm afraid, I seen to have gone blind" is not exactly a barrel o' LOLs. It was terrifying.

Then the aura disappeared and I thought "oh good!" Then shortly afterwards it felt like I'd been hit round the back of the head with a cricket bat. I took myself off to bed for a bit of a cry. "Photosensitive" doesn't begin cut it, I had the curtains drawn and my eyes closed and it was like the world was on fire. I didn't get the nausea that a lot of people report but I can understand how that might be a thing, it felt like... it felt like the house had subsided and everything was at an odd angle.

Horrid clucking things, I feel for anyone that has them chronically.

On the few occasions I've had the jaggies, it's been more fascinating than scary. I recall the first one; I was driving in a familiar town and came to a road sign. I knew what it said as I knew where I was but I just couldn't make the letters into the right shapes. When I've had that symptom I don't get the others.

I think I've had two migraines. The second one started with me not being able to see people's faces when I looked at them, then within about 15 mins progressed through jaggies to numb hands, sharp headache, shortness of breath, loss of strength, nausea and curling up in a ball in a darkened room wondering if I was going to die. I got to the GP about 6 hours after that and they gave some pills which were meant to help but I didn't read the leaflet in the pack. So I carried on feeling nauseous, couldn't sleep and on the second night realised I was sat awake in the middle of the night rapidly blinking and sticking my tongue out like a Maori haka on overdrive. THAT was when I read the leaflet which listed "tardive dyskenesia" as a serious and potentially permanent side effect as well as a load of other symptoms I then recognised. I stopped taking them after that!

The possible/probable first one was similar but it happened while I was scuba diving and damn near killed me because it all kicked off underwater. I was pulled out of the water unconscious, blue, not breathing and with no detectable pulse and fortunately was at an inland site with first class facilities so got O2 and an ambulance was there when I came round, straight to A&E who checked me for a while and then let me go as everything seemed normal apart from aches & pains (like sore ribs from a 15st bloke doing chest compressions). It was only after the second one that I realised that I'd had some trouble seeing before the dive but had put that down to bright sun off the water, and the after effects on the following days felt the same so assume that it was something similar that led to me passing out at depth.

Since then, I've had a few times where I start with the visual disturbance but immediately respond by finding somehwhere cool and dark to rest for a while and necking some pills - so far that's done the trick. @mattbee you have my full respect for facing that sort of thing on a semi regular basis, and even experiencing it once or twice I share your view on those who say "I've got a migraine" when it's just an ice cream headache.

I'm of the (mostly) short and sharp tendency. Since I identified the trigger (neck strain through impacts - bear with me) I have far fewer.

Bizarre as it may sound it was playing cricket (bowling) that mostly brought mine on. Finally tracing it to the smacking down of a braced leg and subsequent twisting of shoulders/body/everything.

I do a lot of neck stretches now and have a tried and tested emergency strategy. I tend to get them now if I jolt my neck/head whilst riding. If I fail to see a rock and get a real wallop up through the pedals or a crash or a whack of the helmet on a low branch. Anything that makes my neck tense up sharply.

The only bit of advice I can give is you really must identify the trigger. You can work back from there. My coping strategy (which isn't always possible) is to take two ibuprofen and two paracetamol and lie still in comfort in dark and cool surroundings. If I can get through the visual aura before the headache really gets going I can just about cope.

I tried triptans, and they are good at speeding the symptoms through, but I had a couple of bad episodes with them where they made me feel very odd - not able to lift arms fully, arms felt like lead and hands felt like they were floating rather than attached.

Probably find it on My5 - there was a prog “How to Stop Your Migraines” on telly the other day. I’m not a sufferer and its channel 5, so might be useless!But you never know

Used to get them very badly in my late teens and early twenties. Ended up in hospital twice with them. Still get them occasionally and they wipe me out. Sometimes end up vomiting with them too.

There’s a special place in hell for those who sit at work looking a bit squinty and saying “Ooh I’ve got a bit of a migraine” no you haven’t, you’re not under your desk, in a ball making strange whimpering noises and hiding from the light. You’ve got a bit of a headache.

I used to get them when I was younger, triggered by bright light. Mild by some people's cases on here, but used to end up vomiting pretty much every time. Then one day in my 30s they just stopped and never had one since. A riding buddy is a Neurological registrar and apparently it's very common to just grow out of them. I used to have pain killers stashed absolutely everywhere as taking a load at the very start (within minutes) could prevent it, but after that it would have to run it's course.

I got my first when I was twelve and on average get one a month since (I am now 53).

I believe I get them from sudden changes in light.

Initially when they would come, always with the visual aura. One side of my body would go completely numb.
I still recall the fear the first time this happened while at school.

Thankfully this doesnt happen now but when they are really bad I almost go blind for an hour, then the pain comes, like a steel ball bearing bouncing off my nerves in one side of brain, the right side.
If it only lasts a day then the following day it feels like my temples are in a vice. Then its gone.

Prior to covid I visited a chiropractor for another reason and he could help with the pain when i got them with realigning my neck muscles, but never managed to stop them.

Now I am resigned to them and when they come I just have to write the day off

I've suffered from migraines since my early teens but they have changed as I've got older.

They used to be intense, blinding pains just above my eyes.

Then in my late twenties they started to be less sore but now came with sickness, partial blindness and an inability to speak properly.

These days they are milder but can still be strong enough for me to have to take time off work to just sleep them off.

You have my sympathies. Rest up, drink plenty of fluids and stay away from lights including screens.

🤞

I’ve got a bit of a migraine” no you haven’t, you’re not under your desk, in a ball making strange whimpering noises and hiding from the light. You’ve got a bit of a headache.

You're 100% correct. But to be fair, if someone's never had one they likely don't know any better.

There's an old skydiving adage: "those who do can't explain, those who don't can't understand."

The post drone isn't much fun either.

I get visual ones from time to time. Usually they are a jagged shape with rainbows round the edge. The centre of the shape gradually goes like frosted glass. Think I’m quite lucky as it doesn’t hurt at all – just inconvenient.

Pretty much what I get, I think mine are stress driven, I can go for several months then I’ll get a flurry of them, and they’ve been more frequent over the last six months, since I lost Joey. The most recent ones have been doubles - first a blurred, ‘frosted-glass’ oval in the centre of my vision, with a tight sensation around the back of my head, so I just wait for the first hint of ‘sparkliest’, which expands gradually into a ‘C’ shape which keeps growing and expanding until it disappears, leaving me with a tight, nagging headache, then after a few minutes I get the blurred blob again, and go through the whole thing again. 😕
I’ve adapted to them, a case of having to, some ibuprofen or a Naproxen helps, but it was tricky if one came on while I was driving, still is at times.
Just really glad I get the aural ones, I can keep going through those.

Totally out of the blue I got a curved flashy zigzag in my vision. Gradually moved from the edge to cover the centre of my sight. And take it from me, sitting on comms on World of Warcraft going “sorry folks, I’m going to have to drop off I’m afraid, I seen to have gone blind” is not exactly a barrel o’ LOLs. It was terrifying.

I get these periodically - first time it happened i was driving and thought i was having a stroke - totally terrifying.
Starts with disrupted vision - sometimes like looking through a cracked/broken window, other times its just a fuzzy area which moves across my field of vision.
This is followed by a strong headache (often the next day) and upset stomach.

I've identified the triggers as lack of sleep or too much caffeine.

I asked my optician if he knew anything about this a couple of weeks ago - he reckons the vision disruption is caused by the brains response to stress - apparently a hormone/chemical (can't remember which) is produced by the brain/body and this disrupts the signal between eye and brain.
He reckon drinking loads of water as soon as it starts happening will reduce the severity and duration.

Yes, regularly, a couple a week at the moment. Mine are of the low level variety, mostly with aura and nausea and digestive issues, and about a 5/10 pain scale. Mostly managed with triptans when I catch them early enough but it's not a great life to live. Currently Working up the dosing of Topirimate.
I've tried all sorts of stuff over the years, various beta blockers, amitriptyline, decongestant, various exclusion diets , acupuncture, physio, chiropractic, all sorts of other prescription drugs I've forgotten, flunarizine, etc, I used to get them when I was early teens, stopped for a bit in late teens then back in my early 20s and been with me chronically ever since. I get bad attacks a couple of times a year which will have me curled up in a shivering mess for a day or two in a pitch black room throwing up trying to rip my eyes out.

The main trigger for me? Cycling and other exercise. Hooray, the thing I love. Without fail after a ride I'll start getting the 'fog' in my brain and muggy feeling in my head, followed by the onset of a headache. Down with the sumitriptan and painkillers and hope I've caught it early enough.

My experience with gps has been really bad TBH. It's been a real struggle getting to see a specialist. I've been sent to IAPT by one GP who decided I had health anxiety as a result of this and another chronic condition, who has no issue discharging me from their service immediately. I've been offered a private MRI 'if I wanted' just because at that time I had private insurance through my wife's company, even though they're was no reason for it and I had no concern it was anything sinister.

Anyone who suffers migraines has my utmost sympathies. Mine are fortunately mild in the grand scheme of things, there are people with far worse, but it really, really gets to you after a while(especially when you get a relentless cluster for the best part of a week, which the drugs do just enough to allow you to function), and it doesn't seem like there's a lot there to help with it on the NHS.

One of my triggers was/is beer. Not all beer. I can often tell after a couple of mouthfuls if it's the "wrong" beer. For some reason Innes & Gunn Original is amongst them. I looked into this many years ago and found that it might be related to an enzyme created during the malting process of barley. I certainly didn't suffer after drinking wheat beers.

Apparently they're more prevalent with women and are aligned to their mentral cycle, from this thread there seems to be a fair few male sufferers too.

Although thinking about it a mountain bike forum is probably mostly men.

Could it be anything to do with tension coming from your shoulders up your neck? Especially possible with hard rides offroad....?

From my late 20s into my early 30s I'd suffer about 1 a week. This was when I was doing a job almost entirely sat at a desk on a computer all day under artificial light. Lovely.
I'd get the visual auras, looked like fractals/sparkler trails in my vision, and about 25% of the time it'd then turn into a full blown migraine headache. I'd need to go home, and lie in a dark room, taking cocodamol.
Otherwise, it would ease off and I'd just(!) feel sick for a few hours.

Since becoming a teacher, and being on the computer less, I barely get 1 or 2 a year.

During lockdown, and having to do remote learning lessons via teams, I started getting them more regularly again.

I’ve only ever had one but it was horrible and I ended up in hospital with a ’suspected stroke’.
I lost my speech at one point, but then once I vomited the symptoms started to ease. I’ve narrowed it down to either being caused by stress or an old shoulder/neck injury (a family member had similar injury and migraine) or possibly both.

I come from a long line of migraine sufferers, but I’ve got a lot better at management over the years.
@submarined have you tried rizatriptan and topiramate? My dad described their effects as life changing on his cluster headaches.

@stwhannah Rizatriptan is a new one on me, will raise that one with the neurologist when I next manage to get an appointment, cheers.
Topirimate is what I'm being introduced to at the moment, gradually increasing the dosage, too early to tell effects but I've had some promising signs, certainly encouraging to hear though, thanks! Next on the list is Botox...

Regarding the cycling induced ones, I've tried all sorts of things - pre, during, and post ride supplements, excessive hydration, cutting back on hydration, salt supplements, position changes, I've even sold bikes wondering if the position made it worse, but no joy. I think it's due to the exertion. Other exercise can bring them on as well, it's not just down to the duration or intensity.

My wife suffers really badly with them as well, hers are predominantly hormonal, and the GP has been useless. Other than hormonal contraceptives which made them utterly terrifying to the point where one of them was so bad I genuinely thought she was having a stroke. She was babbling, couldn't find words,stumbling over her sentences, then within half an hour struck down with blinding pain. At their worse she ended up in a disciplinary at work due to repeated regular absences.b it got very messy.

Migraines are such a vast area that don't seem that well understood from what I can see. I'm sure I read somewhere there are 200+ different variations that all have discrete characteristics.