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Migraine support thread

(45 Posts)
VivienneWestwoodsKnickers Fri 24-Feb-17 10:30:05

A lot of us seem to have migraine here. Lots of different types, presentations, severities, symptoms and lengths of attacks.

Here's a place for support, empathy, questions, inspiration and ice packs for the pain.

OP first: I have suffered migraine since I was 12. They go in phases of frequency, from 3-4 a week to one every few months. I've had stroke symptoms (scared me silly) and been to A&E with the pain once. I get crippling nausea but never throw up. Light sensitivity, skin sensitivity and oh, the pain.....

I take sumatriptan nasal sprays, but rarely as I try to tough them out first (terrified of them becoming ineffectual). Buccastem for the nausea is a miracle cure also spectacular for hangovers. I use an old fashioned ice bag on my face, must buy another for my neck.

If I could invent anything to help (other than a magic medicine for us all) it would be a whole head ice pack to cover my neck and shoulders too.

Am currently on day 5 of a low-level migraine that just won't shift. May have to give in and use the sumatriptan.

MusicToMyEars800 Fri 24-Feb-17 10:38:52

I fucking hate migraines ( please excuse my bad language ) I developed them 10 years ago and like you I can get them frequently in the week or sporadically over the month. Mine vary in strength to completely crippling me to a point i'm locked in a dark room begging for silence and mercy, sometimes I vomit and go extremely dizzy, I find warmth helps mine and a head and neck massage. a good coping mechanism I use is a warm bath in the dark with complete quietness ( doesn't always help though ). I have just got over a low level one it lasted a week, just a constant dull ache with throbbing. I will try the Buccastem, where can buy it? or do I need a prescription for it?

VivienneWestwoodsKnickers Fri 24-Feb-17 10:42:38

Do you have anything like a triptan for the migraine itself?

Buccastem is an over the counter med at the chemist. Purple box, I think you get 7 in a packet.

Because I can go through them like wildfire, my GP prescribes them in larger quantities if I need them (50 at a time) .

RandomDent Fri 24-Feb-17 10:48:40

Mine are usually mild if I catch them in time. I can go to work, although I plan a quiet day!
However the last one wiped me out for a few days (low level, but space cadet for two days after the migraine day) and I bought some sumatriptan tablets from Boots. What are they like? Do they have side effects? Could I drive to work or would you write off the day if you took them?

VivienneWestwoodsKnickers Fri 24-Feb-17 10:53:03

Sumatriptan seems to affect everyone differently. My mum had no immediate effects, but eventually built up (over years) a severe reaction to it and now uses another triptan.

For me, they knock me unconscious in about 20mins, and I stay asleep for a good 3+ hours then wake up groggy and shaky but with the migraine gone.

Strangely, the nasal sprays of the same drug give me only mild sleepiness for an hour and that's it. No shakes or anything.

I'd write the day off the first time and see how you get on. You could be absolutely fine!

HandbagCrazy Fri 24-Feb-17 10:57:11

Oh I hate migraines too. Have been dealing with them since I was 14 (now early 30's).
Have never found anything that works properly - was on amoltriptoline (sp?) for a while which were good but not 100% but had to stop due to ttc.

I've found triggers are my hormones, caffeine, too much sleep, dehydration and low blood sugar, amongst others.

I've found mine we're getting worse and more frequent, then got diagnosed with v v high blood pressure and meds for that has slowed them down.

I get wavey vision, nausea, light and sound sensitivity, temp goes mad (hot & sweaty then cold and shivery) and occasional vomiting.
Had 2 in the past where DH panicked and took me to A&E as part of my face went droopy and I could hear him talking but couldn't respond. That was terrifying.

I generally aim for cool masks (I have loads so I can rotate them) - one on my eyes, one on the back of my neck. High dose dissolvable aspirin. Dark, quiet room with some sort of cool breeze. Sometimes a warm (not hot) bath with tee tree oil in it which seems to clear my head a little. Or I just lie on the bed and suffer through.

RandomDent Fri 24-Feb-17 12:35:46

Thank you VWK. smile

Thattwatoverthere Fri 24-Feb-17 13:02:44

I'm a sufferer too. My trigger seems to be stress even though I can't always pin point it as I don't feel stressed iyswim.
Last year I was getting around 4 per week, the worst was 3 in a day and knocked me for six.
They were pretty severe and affected my balance as my right leg just basically gave up on me each time and I had to drag it behind me. It was embarrassing and exhausting.
Eventually I managed to get a doctors appointment that coincided with me being at a bad stage of one so rather than trying to push a triptan on me (I've tried all of them and they make me worse) they referred me to a neurologist who diagnosed hemiplegic migraine and prescribed topamax which didn't really help.
The only thing that made any difference at that point was going totally gluten free as recommended by an acupuncturist I saw every week. if I had anything containing gluten I got a migraine within half an hour.

I then broke up with my useless ex, cutting down on a 2 hour daily commute to work and they have reduced dramatically. I get a couple a month now and the severity varies but I take an hour out to get the aura out of the way and can function until the end of the day ok.
And have gone carb mad as the gluten intolerance has vanished grin
Cold packs on my head and neck are a godsend when I have one, bright lights aren't great but I'm alright with noise.

VivienneWestwoodsKnickers Fri 24-Feb-17 16:34:42

I don't think I understand the multiple migraines in a day (probably because mine seem to last forever). How does that work? Do you take medication then have another attack or is it waves of the same attack?

acatcalledjohn Fri 24-Feb-17 16:52:00

<peeks in and waves>

I get mild migraines (in comparison) and have a stash of sumatriptan tabs to hand should I need them. Suffered them for a few years now and at first I was able to manage them on normal painkillers, but about 14 months ago they stopped having any effect, whilst the migraines increased in severity and frequency. They seem to come in waves too, my last bout was Sep/Oct (had one every weekend for about 4/5weeks at that time).

I don't get auras, but the nausea, light and sound sensitivity is horrendous. The nausea now is at a point where I am likely to throw up, but the sumatriptan really works wonders.

For me stress is the main trigger (it's the moment of stress release when they hit me), so I am learning to manage my stress levels.

lougle Fri 24-Feb-17 16:55:54

Oh how lovely. I've had migraines for 15 years since they were triggered by going on the combined pill. Symptoms vary but usually include pain above one eyebrow (95% right) then depending on the migraine either +/- jaw pain, nose pain, cheekbone pain, neck/shoulder/arm tingling & heaviness, word retrieval difficulties, brain fog, loss of memory, loss of cognitive function, clumsiness, dyspraxia, hypersensitivity to smell and sound, nausea....the list goes on.

I have just seen a new neurologist so my current treatment plan is nortriptyline nightly, topiramate 100mg twice daily, naproxen twice daily as required, omeprazole for gut cover daily, botox every 3 months and frovatriptan no more than 10 times per month.

I'm also taking fever few, magnesium, vitamin D3, and vitamin B.

For me, the worst migraines are the ones where I don't get the headache. I was at work this week and I was just making mistake after mistake. I couldn't remember a basic procedure that we do. I was so embarrassed and I couldn't understand why I was so incompetent. Then I suddenly realised I had a migraine and the whole day's events clicked into place for me like a camera coming into focus and it all made sense. I hate those migraines.

Auriga Fri 24-Feb-17 17:09:42

Think I have posted on previous threads. I have classical migraine and life has been transformed by giving up on triptans. Instead, at the first sign, I take soluble aspirin plus ibuprofen plus buccastem or domperidone. Usually need a sleep as well. The attack is often stopped in its tracks. I usually feel a bit wobbly for a few hours.

Two drawbacks - it's no good if the attack starts in your sleep & you wake up already vomiting, and no good if anti-inflammatories give you gastritis or ulcers.

The other thing I've learned is that if I have a sleepless night I'll get migraine 72 hrs later. I think this is why I used to think it was relief of stress, rather than the stress itself, that was the trigger. So now if I have a sleepless night I'll take propranolol for 3 days and that usually wards it off.

Auriga Fri 24-Feb-17 17:15:31

Oh, and I've recently noticed a sudden inexplicable drop in mood the evening before. It's taken me a long time to make the association, because my attacks are infrequent now. But if I notice it happening again, I'll definitely try pre-emptive propranolol.

Thattwatoverthere Fri 24-Feb-17 17:30:59

The multiples are having multiple auras, either one after another or with a few hours between. Each one starts the cycle again and I'm back to square one but the more I have the worse the recovery is. I have quite often had a couple in a row.

I sympathise with the brain fog and general incompetence after the main attack. When I was at my worst in the summer I was getting to be really anxious and probably borderline depressed because I just felt so useless all the time. I was either worried about getting another one or still trying to get over the last one.

And yes to the getting them in your sleep, nothing worse than waking up and realising it's too late to take a painkiller and knowing that you're just going to have to ride it out. Luckily now I can take a 400mg cuprofen as soon as my vision is double and can prevent the worst of the pain - it's just a low level annoying headache and wonky walk for a couple of days.

CiderwithBuda Fri 24-Feb-17 17:36:30

Great thread. Sympathies to all. I get them occasionally but have grown out of them really.

However DS who is 15 has been off school since last November with migraines very day. Bar ten days from xmas day to the day school was due to go back.

We have tried pizotifen, propranolol, a triptan whose actual name I can't remember, Sumatriptan tabs on their own which did nothing, Sumatriptan tabs with coke which seemed to work for two days - seemed to break th cycle at xmas but haven't worked since. Chiropractor, osteopath, cranial osteopath, kinesiology, National Migranie Centre in London (we live in Somerset) and are currently trying acupuncture. He has had an appointment with mental health nurse at school who doesn't think it's stress or anxiety related. And he has GCSEs this year!

His all start around 5am.

He wakes up and befor he can get back to sleep the aura starts and that's it. He then sleeps it off till early afternoon.

After the first session of acupuncture he stopped being sick with them.

He is on Topamax and this week finally got to the max dose but no change. Doc apparently thinks we should wait about two months on the max dose before she will refer him on. About to change doctor!

I also looks up migraine and wheat as some family members are coeliacs. Found info on a migraine site with info on allergy testing and we did York Allergy testing. It shows food sensitivity rather than allergy. Have the results but haven't implemented as yet as had just started the acupuncture and figured if we do too much at once we won't know what if anything is actually working.

Will read with interest for tips.

tobee Fri 24-Feb-17 17:40:06

I don't know if I have migraines. In the last 10 years (?) I get headaches that last for most of a week, front of head, feel a bit hot, nauseous, sleep helps. Neurofen and paracetamol don't touch it. But, I don't know, they don't feel really terrible headaches just non shifting, lengthy and nausea inducing. I think:- am I just getting repeats of a virus?

Would love feedback. I feel others suffer far worse, so probably not migraine?

UnbornMortificado Fri 24-Feb-17 17:44:15

Has anyone any advice or treatment for migraines during pregnancy?

Just short term over the weekend till I can see a GP Monday. I'm on amitripiline for depression anyway but no idea what OTC stuff is safe.

Definitely a migraine nothing dodgy I had them all the time as a teenager.

PinkCrystal Fri 24-Feb-17 17:50:46

I have horrid very severe migraine. It starts with increasing pain. Reaching extreme throbbing pain and extremely vomitting lasting hours or days. I don't want to live when it is that bad. Writhing in pain wretching in front of the kids for hours. It is horrible to live with several family members get them too.

I have been on several tablets. Am now on Pizotifen and sumatriptan and buccastem as and when. I live in fear of the next one and thus take too many painkillers too for headaches.

I am retraining in new role and worried about it destroying my career.

Efferlunt Fri 24-Feb-17 17:58:59

Hello can I join? The doctor has told me I don't experience migraines as I have no aura, but I do have crippling headaches that can leave me in a darkened room for a couple of days chucking up and unable to eat.

In this case I think I know my problem is muscular. My next muscles get so stretched that they eventually go into spasms and my whole head and next sieze up. The only thing that seems to work is a shit load of content codene and a bag bag I can hear in the microwave and drape over my next. If anyone else experiences similar I'd love some tips!

CiderwithBuda Fri 24-Feb-17 18:19:39

Unborn - I seem to remember being told paracetamol while pregnant and if it didn't work I could take ibuprofen.

UnbornMortificado Fri 24-Feb-17 18:28:29

Thanks Cider I sent DH out for Migraleave the pink ones earlier, looked it up and not suitable due to the anti sickness ingredient (I'm on codeine reducing under GP's guidance)

£8.99 wasted as well, which just added to the feeling sick.

strawberryblondebint Fri 24-Feb-17 18:28:40

Hello. I'm a migraine sufferer. I have tried pretty much everything on be thread. I have some success with rizatriptan (maxalt melt). I get 12 a month. I also take venafalaxine 100mg daily. Mine are mostly hormonal however I only have a short cycle and in the menstrual week can have as many as 4. Still get them on non period week but not always. I can't speak properly. Feel sick. Splitting head obviously. And after it very emotional and teary. I sometimes ball up a pair of socks and lie on them for pressure. What did seem to help for a good few months was a daith piercing. However mine wouldn't heal properly so last week I removed it. And bang this week the migraines are back. I just want my life back

Auriga Fri 24-Feb-17 18:51:21

Unborn, better to ask a pharmacist than us lot. They can tell you what is safe to take. Partly depends how many weeks you are.

Effalunt, those do sound like migraines. Not all variants have an aura, there's a form of 'simple' migraine which is just a repetitive pattern of headache, not necessarily severe, and nausea +/- vomiting. You may start to get auras at some point. Worth going back to GP or asking for second opinion.

UnbornMortificado Fri 24-Feb-17 19:00:05

Aur I thought it would just be a blanket ban on everything.

I was refused ibrufen the other week even when it was for DD. I'm not twisting I know the guidelines will be stringent, it's bad enough when your a none prescribing HCP.

I hoped someone was going to say a magical fruit or some other batshit remedy that would work.

VivienneWestwoodsKnickers Fri 24-Feb-17 19:00:53

CiderwithBuda small things - what time does the heating come on at night? I am guaranteed a migraine if I sleep in a hot room.

Also, GCSEs are stressful. I've spent the last 20 years telling myself I'm never stressed... But when I look at the phases of my migraines at their worst it was during exams at uni, big projects at work, tough times deadlines for all sorts of things, hating my job - all had an inevitable link to the migraines.

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