To wonder how Migraines can be harmless?

I’m also coeliac. And extremely low in iron at all times. Even with fusions and stuff

I have voluntarily given up driving due to the Alice in Wonderland stuff happening almost daily :(

Im still working for now but I am wondering if I ought to opt for less stress soon and have an easier role.

Just your regular reminder even amongst the migraine community:

Not all of us have identifiable triggers! Especially not with food!

I've tried all the following to no effect (and yes simultaneously under a proper dietician)

• gluten
• dairy
• chocolate
• tyramine (aged cheeses, processed meats, soy sauce, brewed alcohols, fermented food, pickled food, dried fruit, very ripe fruit...)
• vegan
• vegetarian
• Atkins style meat heavy

What helps me (but doesn't cure me!):

• Migralens sunglasses - it's like a cold compress on my face and I can even go outdoors in daylight with an attack! I am absolutely evangelical about these
• triptans - I have frovatriptan for those insidious attacks which I just know will come back as they last the longest of all triptans. I also have zolmitriptan nasal sprays for the cyclical vomiting attacks where I can't keep pills down
• antisickness meds - I've had pills for years, but they stopped working. I then had scopolamine patches for ages but they are currently off the market 😭 so I'm eeking out my last few patches and praying they come back

Advice:

• if one triptan fails, try another. Ask about different preparations - nasal sprays, melts and even injections are available
• ask for antinausea medication and use it early in an attack
• read the NICE guidelines on treatment and stamp your feet with the GP if you have to, referring to it https://cks.nice.org.uk/topics/migraine/management/adults/
• always take a migraine diary in with you to appointments - I find a visual aid really helps a GP actually comprehend the scale of what you're living with.

shame. just shows how the triggers for migraine are so different. This worked for a relative of mine who had migraines all their life.

personally my aura ones changed as I got older and now post menopause I get an aura but no headache yay! but i had to come off HRT as it gave me a weird migraine with a circle aura, so odd.

I also have hemiplegic migraines. The meds for them are awful. They always start off with Alice in Wonderland seizures. Then I look like I’ve had a stroke.

Funnily enough today I thought “how is this normal and what is going on?”

Im worried I’ll get dementia earlier and all sorts but my neurologist says everything is fine and to stop worrying!

I wish. I’m coeliac so zero gluten and I get migraines just the same as before I was diagnosed 25+ years ago in my mid 20s. I’ve been having migraines since age of 9 :( Hope it helps someone else though!

I’m in the UK and I was prescribed Candesartan about a year ago, just for migraines as I didn’t have high blood pressure. My GP said it shouldn’t cause problems with my blood pressure going low, and it hasn’t.

This is a good point, I’ve removed gluten and it’s certainly helped

Just suggesting... have you tried removing gluten? Migraines are an effect of gluten intolerance, its a wave of 'inflammation', not many people realise as they think gluten only causes gut inflammation.

sorry its such a nightmare but worth a try?

I get really giggly, light headed and euphoric up to 24 hours before they arrive.i also forget and slur my words so can appear drunk.

If I catch the pain before it starts then it's manageable, if not it's debilitating, the flashing lights and shadows of images affect the vision and I suffer slight vertigo. Just enough to feel off kilter and sick, but not enough to stop me moving and functioning.

I find sitting with my head at the right angle and my eyes closed helps a lot until they pass, lying down doesn't help much. I also get an upset stomach, and for a few days afterwards I struggle to recall words, it feels as though the connections in my brain are misfiring. It's not good when I get 2-3 in a week, or a near continuous one for up to 4 days. I find stress is a contributing factor and causes them to be longer and more frequent. I also get at least one when I'm on my period.

Mine started last year when I was 43, they started episodic then went into full blown chronic, to the point where I was having a long, full blown migraine every day. I was bed bound for almost 3 months. I developed a condition, secondary to the migraine (caused by the migraine) called middle ear myoclonus, basically the migraine was causing my ear to spasm constantly and was effecting my hearing. It was horrific.

MRI showed white matter scattered on my brain.

I now take two daily preventatives and they have given me my life back (even though I’m in bed now with a migraine, it’s no where near what it was this time last year).

I did a lot of research and what I did not know was that migraine is not a headache. It’s a collection of neurological symptoms that systemically can affect different parts of the body (medics are now starting to understand that babies do not have “colic” they are experiencing an abdominal migraine).

For example my symptoms are; Left sided sinus pain, facial tremors/almost like a Parkinson tremor/ nausea / the need to urinate (I lost full control of my bladder in the early days and had a night in hospital) / middle ear spasm / head aura that feels like my entire head is vibrating / numb face

This is interesting. Are you in the UK? I’ve read that there is some evidence that it’s effective but it’s not licensed to treat migraine in the UK.

I was prescribed it for hypertension (which was diagnosed when I went to the GP about my migraines…). Since taking it my migraines have almost gone. Same as you, very occasional and nothing like as bad as they were before. I always wonder whether the migraines were caused by my high blood pressure or if the candesartan is treating both. Either way it has been life changing for me too!

Another chronic migraine sufferer here.

I've had them all my adult life but in my 20's and 30's they were linked to my cycle and I only usually got one a month. From my early 40's onward they've got worse. I was told they might ease after the menopause but I'm now 60 and this year I've had 85 migraine days. My worst one this year lasted 4 days, on average it's 36-48 hours and when I have them I can't eat so my weight is down to 50kg at present.

Mine are unfortunately drug resistant, nothing will shift them. For me there are other factors; I have scoliosis and fibromyalgia. I do feel like my memory has been affected by having so many severe migraines over the last few years.

At the beginning of this year I was taken to hospital to be checked out for stroke because I had woken up numb right down my left side. It turned out to be my first hemiplegic migraine and I have since had another. I don't think they're harmless and I do live in fear of a full blown stroke.

Migraine is the bane of my life. It not only stops me from being able to work but also prevents us from going on holiday or having any sort of social life.

Fellow sufferers, you have my sympathies, people who have never suffered a migraine really have no idea how debilitating the condition is.

I’m sorry, it’s horrible isn’t it and the quality of life really tails off :( It seems like long term solutions aren’t a thing with migraines, you do one thing for as long as it works then have to move onto the next thing. It’s exhausting. I hope you find your solution asap.

@Birdahoy yes did that one seemed to work for a while when I was younger then my hormones changed and things went to pot again. I haven't found anything that has worked long term. 😕

@friskybivalves mine definitely have a hormonal link. But are not just hormonal, they have got worse with pre menopause though and much harder to control. I'm finally trying one of the new CGRP'S drugs and it's actually helping, but after waiting for 2 years on the NHS I've had to pay for it privately.

Often when you have a craving for something your migraine has already started. This is classed as the predome phase of the migraine. People used to mistake this for triggers, say you crave chocolate eat chocolate then get a migraine. But actually more recent research shows the migraine already started before the craving. Which is why single triggers for migraine are actually very rare.

@Birdahoy is that the David Buchholtz one?

I had chronic migraine for so many years. They’ve all been awful but a few really stand out - sobbing on the bathroom floor and having a panic attack because I genuinely couldn’t deal with the pain.

Went through 3 or 4 neurologists but nobody could actually tell me why nothing was working in terms of preventatives. Did Botox, sort of helped.

While I was ill with something else entirely I saw a recommendation for a book called ‘heal your headache’ ( I know….but it is about migraine). Had a read as nothing else was working. Did a 4 month removal of all migraine trigger foods and triptans, and felt immediately better. Also felt like a first class idiot for not putting 2 and 2 together before. Found out when I started reintroducing trigger foods one at once that caffeine, cheese, chocolate and leavened fresh yeast products are off the table, basically forever.

I’m down to one episode a month now which usually spills into 2-3 days of headache rather than a migraine. The difference is unreal, and what headaches I do get respond much more to paracetamol or ibuprofen.

I know how frustrating ‘have you tried x?’ is because YES WE HAVE but it turned out I’d never tried removing everything at once 😳

@friskybivalves you are right on all those points!

I usually take as many pills as I'm allowed, me too @CabbagesAndCeilingWax. My Neurologist told me to go hard on the painkillers when I need to, then take a day or two off, then go hard on them again.

It is extraordinary how many more women get them than men, even when they are not triggered by hormones.

Mine come on at night, 99 percent of the time. So i cannot take any preventatives (and anyway, triptans have awful side effects for me). At the neurology clinic it is always stuffed with women. Poor us! Call me a cynic, but I feel a lot more research into the now ground-breaking jabs and drugs would have been done earlier if men had suffered as terribly as us too!

Like most others I have painstakingly tried to identify triggers and cut out alcohol, chocolate etc etc. But my god I have mad cravings for a Coke, a whole bag of jelly babies and Monster Munch - and then I know for sure that the weekly torture session is on its way.

Sumatriptan packet leaflet says blood vessels expanding cause pain.

I’ve been prescribed Candesartan for migraines and it’s been life changing. I barely get ordinary headaches anymore. I do still get a very occasional migraine but nothing like before. Sumatriptan didn’t suit me at all.

It’s spreading cortical depression. A wave of electrochemical depolarisation that spreads slowly across the brain. No evidence of irreversible damage in healthy brains.
It does seem to slightly increase the risk of stroke.

I get the migraine: aura no headache version. No headache (or v minor) but I can’t see or talk or even think straight for at least 2 hours! I sometimes can’t work out where I am or what I’m doing when I’m getting it 😂 It is scary.

Afaik sumatriptan doesn’t work on the aura part, just can stop the pain phase 🥲

I've found lately that I just can't sleep when a migraine is in full force. I used to take some painkillers and sleep it off but I can't seem to do that now. I still lie in a dark room with an ice pack on the back of my head but rarely manage to sleep.

and you are so right, they are different, just read packets!