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tell me about your migraines and other superbad headaches please

151 replies

Alameda · 10/07/2012 10:22

DEPRESSED to have had first one for about seven years plus it was completely different - no warning, went on for longer and I still feel shit (used to feel reborn once had slept it off) surely migraines cannot just reappear when they feel like it with a whole new set of rules?

and what do you take for them?

OP posts:
LittleIllusionMachine · 18/07/2012 10:20

Can I join?

I've suffered with regular migraines since I was 5, I'm 26 now. Mine (luckily) only tend to last for up to 24 hours. I have periods (which only last a couple of months) when I won't have any, but all of a sudden I will get 3 or 4 within the space of a couple of weeks.

I seem to have a lot of triggers, but the main ones are:

Stress
Dehydration
Computer overuse
Smells (Even walking past Lush in the shopping centre makes me sick, I have no idea how people could work in such an overpowering environment! Also those little tree car airfresheners - bleurgh)
Stuffy / poorly ventilated rooms / "fake air" - like air conditioning in cars
Bright lights, especially flashing lights
Crying
Travelling - car/train/aeroplane/boat whatever. I think it's the motion.

I have recently (past year or so) been having aura migraines. I get bitemporal hemianopia which is awful, it makes me confused and my speech can sometimes be affected. My right side is always more affected than the left. I ALWAYS get stabbing pains in my right eyeball. It hurts SO much, it feels like my eye is going to pop out from the pressure behind it, and it's like I have someone constantly stabbing it with a needle.

The headaches are so bad I can literally do nothing but lie down and try to sleep. It's awful when one comes on at work because I have to travel home on the train. Confused Once it's established painkillers don't touch it.

It makes me so cross when people just consider it a "bad headache". I have had to leave work on a couple of occasions and I can see people are like Hmm.

MOSagain · 18/07/2012 13:55

Littleillusion, thats what I get, the stabbing pain in my right eye and I feel like my head is going to explode.

Just back from doctors and actually a little scared. I was with him for 30 mins and was only supposed to be a 5 - 10 min appointment. I'd said about the migraines and he was talking about stress being a trigger which I know it is as things not good at home. He was going down the route of prescribing something as my blood pressure was very high then started asking all sorts of questions, went to talk to other doctors and then came back saying "I don't like it". He said it just didn't sound right to him, in particular that they were coming on so suddenly, without the normal sign normally associated with migraine. What with that and my high blood pressure he wasn't happy and has referred me for an urgent CT scan. He said if I get another one, or vomiting, or double/blurred vision I've got to go straight to A & E.

I have to admit I'm more than a little scared and not sure this will do much good for my already high blood pressure Sad

Alameda · 18/07/2012 14:01

good luck MOS, when is scan?

OP posts:
MOSagain · 18/07/2012 14:10

Thanks Alameda. I don't know, the GP filled in the paperwork for an urgent referral to the local hospital but said he didn't know how long it would take. All a bit panicky here as supposed to be going on holiday in 2 weeks.

SquishyCinnamonSwirls · 18/07/2012 14:14

Has anyone else noticed one eye being hotter than the other? Yes, I know I sound like a freak. But for the last few months when I get a migraine (hormonal or weather/pressure related), and I've had my sunglasses on the right lense gets fogged up!?!

Thumbwitch · 18/07/2012 15:31

I've never noticed one eye being hotter as such, but the eye that is on the same side as the migraine always runs, and often goes very red (presumably as a result of all the wateriness) and quite bloodshot sometimes. So it's very obvious I'm not faking! (just in case DH thinks I'm putting it on sometimes Hmm - he doesn't get headaches so can't understand the "fuss")

alto1 · 18/07/2012 16:07

Suspect I've had them all my life - used to get stereotyped headache on particularly stressful days at work and with periods. Also had recurrent headache and vomiting as a child, which I recognised and which always ran the same course.

But it became unbearable when I stopped HRT (which I'd taken since having surgery to remove both ovaries). Zolmitriptan and prochlorperazine (buccal) do help, but I still have to go to bed. Propranolol on its own reduced the frequency a bit. In the end, in desperation, I went back on the lowest dose of HRT. This has made it bearable most of the time.

They come in runs - I'm much more susceptible to triggers like caffeine and scent in the aftermath, the threshold takes a while to go back up again.

Regular exercise has helped too.

Even so, the last one was so bad I almost called an ambulance - I was trying to get home and I didn't think I could make it. Dreadful vomiting, in public (railway station) almost as bad as being pregnant again. And awful headache Sad

workshy · 18/07/2012 16:19

I suffer from migraine, cluster headaches and thunderclap headaches (although I can count the number of thunderclaps on one hand)

I now take amytriptline on a low dose everyday and it's like a miracle cure -I've gone from having them twice a week to twice a year, it has literally changed my life

GP didn't want to prescribe it but consulatant did :)

fuzzpig · 18/07/2012 16:24

Oh no MOS how horrible :( it sounds like the doctor was really good and thorough. Try not to worry about it and remember your health is infinitely more important than a holiday.

Lots of hugs to you. If you need any RL support, even just a chat, you can always FB me. xx

twonker · 18/07/2012 18:41

[http://www.mumsnet.com/Talk/media_nonmember_requests/1519819-Do-you-suffer-with-severe-or-unusual-migraines-Looking-for-case-studies-fee-available media request] for migraine sufferers.

twonker · 18/07/2012 18:42

Media request

ducklingpie · 18/07/2012 23:30

This is going to sound mad but it is amazing to know there are so many others out there who struggle with this, its such a lonely thing to suffer with migraines.

I've had them for the last 20 years, initially infrequently and following no discernible pattern but more recently very frequently.

Having my second child seems to have triggered a migraine avalanche.

I would get a severe one every month, lasting 5-7 days, these tend to have a two day build up when I'm disorientated, easily confused, sensitive to light and noise levels, yawn a lot and have very cold legs from the knees down. Then the headache and vomiting, dark room, ice pack etc. After the headache passes I tend to have a 'hangover' for a couple more days.

I would also tend to get another one two weeks after this severe one passes, although these intermittent ones are less severe and may pass in 2-3 days, I tend not to be sick with these lesser ones.

I've also had two thunderclap headaches in the last 5 years and been hospitalised both times - these are absolutely and utterly terrifying, nothing in my experience compares to this pain.

There is hope though, last year I referred myself to the London Migraine Clinic. Following their advice I feel the migraines are now much more under control, I'm more in control of my triggers and I can head off the less severe ones completely. The big ones are still as severe but I seem to get over them more quickly, so instead of a week of my life gone it may only be 3-4 days.

I'm now pregnant so cannot take anything for acute symptoms but have a programme of medication to try to manage their severity/frequency which is sort of working.... I am counting the days until I can take tryptans again, oh how I miss these!

Sorry, bit of a long post, got carried away!

Anyone struggling to manage and not getting much help from their GP, I would thoroughly recommend the consultants I saw at the clinic, they have literally changed my life.

ducklingpie · 18/07/2012 23:37

workshy do you mind telling me what does of amytriptaline works for you? I've started this recently and on my second dose increase as I'm not feeling much benefit yet, although early days, also how long did it take to have an effect?

I'm soooo impatient!

workshy · 18/07/2012 23:44

don't mind at all

I take 30mg and it took about 5 weeks to make a difference (I think, but sometimes I could go 2 weeks without an attack so only an estimate)

I initially had it prescribed by the consultant and he would only review doses after 6 weeks

PigletJohn · 18/07/2012 23:57

squish

my left eye used to feel like it was swollen, and got bloodshot. Pain also semed to move to behind/above left eye, having started near base of skull.

I've almost forgotten now, as I've been on Sumatriptan for 8 years and hardly ever get a really bad one now (like I'm away from home and got no drugs)

ducklingpie · 19/07/2012 11:27

Thanks workshy, that's reassuring, I'm just being impatient!

mintymellons · 20/07/2012 11:35

I used to get classic migraines, started in my teens and had them on and off for years. However, in the last ten or so years, I get the silent migraines instead which is basically the aura/zig zag thing without the headache. Mine tend to be hormone related, so get around time of ovulation or AF.

twonker · 20/07/2012 21:25

Hi everyone, I haven't had an actual migraine for ages, but I have just had 2 weeks of headaches. Not desperately bad ones, but painkillers not touching it, and feeling exhausted the whole time, and a fuggy head even when not in pain.

I read about feverfew, and picked a few leaves in the garden and ate them, and my head cleared within minutes and the pain was gone after an hour or so. I feel so much better now. I can't believe that there is a remedy growing as a weed in my garden!

I went to holland and Barrett to buy some capsules, but they say they can't get it licensed at the moment. . . . Anyone know of a good source of feverfew? Obviously my garden is there, but I am planning on going to holiday shortly and would like to take a supply with me.

KenDoddsDadsDog · 20/07/2012 21:28

I had such a bad one a couple of weeks ago that I ended up in hospital. Painkillers, Sumpatriptan, nothing would work. Had a scan and lumbar puncture. No idea what triggered it.

alwaysworriedtoo · 26/07/2012 19:42

Whenever, I get a migraine it tends to be that it comes on overnight (mostly) terific pain behind an eye and really nausius (sp?) cold flannel on head, dark room, paracetemol, and a day off work gets rid of it. I feel really grotty and movement doesn't help. I'm not always actually sick but I sometimes feel off balance. If I get them during the day it comes on gradual like a normal headache, sometimes taking something helps (nurofen) but sometimes not and then its the stabbing grabbing eye pain etc... A friend of mines mother has taken feverfew for years and she never suffers now, but they are not good to take if you are wanting to concieve( and we live in hope! one day...)

fuzzpig · 23/08/2012 21:20

Hello, just thought I'd bump this back up. Anyone still around?

I'd been headache free (well, reasonably so) for a few months but the clusters have started again :( they lasted about 6 weeks last time so I'm not feeling optimistic.

I've been off work for a month with a flu thing that wouldn't shift, and after discussing my last 18 months or so with the GP I have been referred to a Chronic Fatigue Syndrome specialist as he thinks I have CFS :(. Hadn't actually had my appt with the neurology dept yet so no idea what's going on there. GP reckons it may all be related. I've still got some diclofenac from before but am currently taking naproxen for the muscle/joint pain, and he says I can't take both together. Neither really worked that well anyway.

Supposed to be returning to work next week and can't afford any more time off... bit worried. Why now?!? Angry

lissielou · 23/08/2012 21:23

Ive got another hovering now, just changed my glasses though.

fuzzpig · 23/08/2012 21:30

I found myself wondering if my glasses had anything to do with it - this year I changed from normal frames to ones with fashionably wide arms! I always take a while to get used to new glasses, even if the prescription hasn't changed Confused

Hope you feel better ASAP.

gladyoucame · 29/08/2012 11:07

Just found this after having headache for last week. Haven't had one like this for about 5/6 years before I had children. Doctor has prescribed Naproxen and low dose (10mg) Amitriptyline. Hope they work soon. I know the Amitriptyline will take a while to work. Has anyone had any side effects with them?

fuzzpig · 29/08/2012 16:59

I've had naproxen for joint pain and it didn't give me any side effects (although didn't help with the pain much either!)

Thanks to a cancellation I have an appointment with the headache specialist in the neurology dept tomorrow. No idea what to expect! My recent headaches thankfully didn't develop like last time although I'm still getting a lot of general headaches. I just started back at work yesterday on reduced hours.

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