To wonder how Migraines can be harmless?

[FranksBank]

I know they are, and don't cause damage. But the mind boggles as to how when it must impact my brain in such a huge way.

My face drops to one side, one side of my body goes numb. I cannot read and make of sense; my speech slurs. I can't recognise faces and lose my eyesight in one eye

These are just a type of migraine (confirmed by a Dr) and they're horrible. I am baffled now they can have no lasting impact on the brain

Anyone else find it shocking that you can't seen any physically evidence for them on an MRI? I'm not medical. So I'm just talking nonsense really - but it is true they cannot be 'proven'

I the post drome symptoms are nasty too.

Argh! Be grateful if someone could join me in moaning

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.

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.

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!

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

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.

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?

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

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.

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 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!

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.

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.

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.

Migraines are NOT linked to gluten intolerance for most of us. Please don't suggest they are.

Whilst inflammatory responses in the body can trigger a migraine, your knowing one person for whom gluten creates such a response does not read across to the approx 10% of the world who live with migraine.

Just reading through everyone's symptoms is horrendous. This thread should be compulsory reading for GP's.

I get a really depressive low mood the night before a bad migraine.

I also sometimes get a burning hot ear.

I rarely get aura.

I get nausea but don't vomit although I do get diarrhoea sometimes during a bad attack.

Almost all my migraines are left sided but when I do get a right sided one the nausea is horrific. With left sided ones I get more pain and weird sensations (numbness etc) and it affects my jaw and my ear.

This is a thread to help anyone who needs it, why are you being so unpleasant telling me not to suggest gluten can be a trigger?

you said yourself...Whilst inflammatory responses in the body can trigger a migraine...

Read the coeliac website if you need to but please be more open minded. There are lots of reasons people get migraines and the fact that I know someone who was helped by removing gluten (using a dietician) could help someone else.

Candesarten is regularly used to treat migraine in the UK, although most often only prescribed by neurologist. Some specialist GP'S may prescribe it as well. There is quite a list of drugs that cam be tried. (Hum I've tried most of them).

But there is a totally new class of drugs that have been specifically developed for migraine. These new CGRP'S drugs are only available to people who have failed traditional treatment. And are hard to access in some parts of the UK. But can really help some people. Most are take as a monthly injection, there are also two newer gepants which are tablets. One which is an alternative to triptains as an acute medicine Rigepemant, and Atogepant which is a preventative.

They are even developing an even newer class of drugs which look even more promising. But they have only just started human trials.

I was reading the other day about a woman in a similar position. She’s had some kind of latest tech device inserted into her (maybe spine?) and it’s really helped. Maybe worth googling?!

I’ve suffered from hemiplegic migraines since I was 6 years old. First one was a shock I can tell you.

I’m on topiramate and sumatriptan. It’s a whole body shutdown for me maybe twice a year. Cannot swallow, move, speak or think really. Ive lost count of the number of times I’ve vomited over the side of my bed because I can’t make it to the toilet or call for help.

I think worse than the actual migraine is the constant fear you’re going to get one (especially if it’s been a while), it’s embarrassing to miss days off work or have to call someone and be sent home. I have fond memories of vomiting on DHs jacket in the car as he had to pick me up from school one day.

Then to have someone say “oh I had a bit of a migraine this morning, I took two paracetamol and got on with it!”

I can’t remember the pp who said that at one point they were investigating whether migraines were a form of epilepsy. My migraine triggers tend to be the same as my friend who is epileptic. Mine tend to be (but aren’t always) visual triggers such as artificial lighting, strobe lighting, places with crap ventilation and enclosed places where people are rushing around in all directions.

They run in my family on my mum’s side and I’ve not heard the memory loss/dementia link before, but the ones that have suffered with migraines have ended up with dementia. I have shocking memory loss and face blindness but never even thought to put it down to migraines. There’s so much we don’t know about them. Although it makes me feel a bit better about being so forgetful. 😬

Migraines! Mine were destroying my life. I was having them continously this time last year. They went from chronic to acute in a matter of weeks.
Luckily my GP is actually excellent and my other half is a nurse so I knew enough to ask to be referred to a specialist headache clinic who saw me immediately. I had the injections in my head which took them out for a few weeks and then I went private and got the new drug atogepant. Which worked immediately. Since then which is 8 months I have had 4 Migraines instead of 4 a week. And the intensity of them is less and the impact not as long lasting pretty much no post drome.
Also the atogepant takes the Migraine down with no side effects so I didn't have to take a triptan.
I think the new drugs will be available on the NHS but for me they are pricey plus the consultants fee. I am just lucky to be able to both pay and be in London where this is available.
The drug has changed my life. I wish it was more widely available.

I used to have the Alice symptoms at times - feeling like I was very big and the world had become smaller? Weird sensation.

My migraines started in late teens but really got out of control during peri meno.
I was sick 3 weeks out of 4 - so I'd have one in the build up to period, one during the week of it and one after. Having just one week per month of function was not fun. They would last for 3 or 4 days and then I'd just be wiped out for days after.

Thankfully only once in a while now. Sorry for those of you still suffering, I hope the same happens for you and you find what helps or they go of their own accord.

Thank you, @fashionqueen0123 - I'll look into it. I'll try anything at this point!

Thinking back ( I'd forgotten) my worst ever was a week after having a lumbar puncture. I was alone at night with 3 kids and a new baby. All I could see was a big red number 4 from the display on the tv.
The pain was horrendous. I remember thinking that I couldn't get up the stairs to the children or look after the baby.
My husband was out at a sports club presentation evening. I rang there ,the bar man whom I knew answered. I heard him say " it's your missus ,she's got a headache. "
My mother would be ill for days wiyh migraine as was our neighbour. I wonder why it has never been taken seriously. It's really disabling for some of you. I think I got off lightly.

I'd also be interested to know why I crave things like red can of coke, salt and vinegar crisps and RedBull when the worst of the migraine is over

These things aren't triggers as they aren't had before the migraine. I've checked my sugar levels during one too and always normal

But lots of people seem to say the same cravings