Migraine Advice

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I have chronic debilitating migraines but luckily they are mostly controlled at the moment thanks to a lot of meds. I have aimovig injections monthly, nurtec every other day, and take gabapentin, cymbalta, birth control (Ethinylestradiol / Levonorgestrel) and mental health meds. I also take magnesium supplements. I'm glad they made nurtec a preventative instead of just a rescue med, taking it eod has been more helpful than just taking it when I get a migraine - especially because I can't take triptans.
 
Chickenandgravy said:
I suffered terribly, triptans were the only thing that helped 😭 I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain 😔
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Wheat is my trigger for migraines! I had brain scans you name it, a friend suggested food allergy/intolerance test, I thought it was rubbish but was so desperate…wheat and dairy off the charts…wheat gives me massive debilitating migraines, dairy buggers my stomach and makes me vomit!
 
oogling said:
Wheat is my trigger for migraines! I had brain scans you name it, a friend suggested food allergy/intolerance test, I thought it was rubbish but was so desperate…wheat and dairy off the charts…wheat gives me massive debilitating migraines, dairy buggers my stomach and makes me vomit!
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Same here! I did the whole 30, which is just Whole Foods for 30 days- fruit, meat, veg basically clean eating. I reintroduced gluten and my migraines were more frequent and worse in severity. Triggers will drive you nuts, I love red wine and gave it up for a year and no change. Glad to be able to have that again but it was constant guilt for thinking I may have caused it by not identifying a trigger. I had a friend recently say to me that she can’t feel sorry for me because I still drink red wine, as if I bring it upon myself. Literally everything is someone else’s trigger but red wine and chocolate are the ones that are always published, there’s so much misinformation out there
 
I gave up caffeine when I was a teenager cos it was one of my triggers. Now I only really get them when I’m stressed or tired. I take propranolol to prevent them and it’s definitely helped.
 
I suffer with pretty regular headaches, which I think would fall under the migraine category - always on my left side near temple and throbbing type pain. Often accompanied by nausea and have vomited a few times when they have been more severe. They are definitely hormone related because I didn’t get a single headache when I was pregnant - the only time I haven’t had them since my teens.
I’ve noticed I’m more prone to them when I’m tired too. I often yawn and feel very tired before they start, as well as having a tense, stiff neck.
I’ve never found anything to help, but I haven’t been to the doctor specifically for them, I’ve just put up with them really. pain are often ineffective. The best thing I’ve found is sleep. When I get a bad one, sleeping it off is the only thing that helps.
Oh I crave sweet foods when I get them too! Definitely want lots of carbs.
 
Blonde_moment said:
I suffer with pretty regular headaches, which I think would fall under the migraine category - always on my left side near temple and throbbing type pain. Often accompanied by nausea and have vomited a few times when they have been more severe. They are definitely hormone related because I didn’t get a single headache when I was pregnant - the only time I haven’t had them since my teens.
I’ve noticed I’m more prone to them when I’m tired too. I often yawn and feel very tired before they start, as well as having a tense, stiff neck.
I’ve never found anything to help, but I haven’t been to the doctor specifically for them, I’ve just put up with them really. pain are often ineffective. The best thing I’ve found is sleep. When I get a bad one, sleeping it off is the only thing that helps.
Oh I crave sweet foods when I get them too! Definitely want lots of carbs.
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If they're hormone related, it might be worth asking for the pill? I did and had virtually no issues for 6 years. I then started getting them again and switched to the injection. Not had a period since and not had hormone related migraines since.
 
Melian said:
If they're hormone related, it might be worth asking for the pill? I did and had virtually no issues for 6 years. I then started getting them again and switched to the injection. Not had a period since and not had hormone related migraines since.
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Thanks, I have tried the Pill (several variants) and it doesn’t suit me unfortunately. I’m also going through the roller coaster of peri-menopause. Early menopause runs in family; my Mum was fully menopausal at 39. It’s fun being a woman 🤦🏼‍♀️
 
It took the gps years to refer me to the headache clinic within neurology around 8 years ago. The dr there reckoned I’d I’d been having migraines for years and not just headaches when I was a teen.
He started me on topiramate which worked but upping them within two weeks to the recommended dose was awful. So I discussed it with him. And it took me a year to up them completely. I’m still on them, I very rarely get migraines now compared to 3 a week.
I was given naratriptan which I could take when I was busy and unable to go and lie down. And rizatriptan when I was able to go straight to bed.
They did query hemiplegic migraine twice before topiramate also.

It’s a great preventative if your Body either copes with the side effects or you can come up with a plan with a Dr or specialist.

edit to add instead of taking any topiramate in the morning I take it at night.
Also the gp had me try a few other things before they would even consider a referral. I was 13 when I first saw a gp about migraines, and mid thirties before the gp referred me to a specialist 😖
 
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Peeltheavocado said:
It took the gps years to refer me to the headache clinic within neurology around 8 years ago. The dr there reckoned I’d I’d been having migraines for years and not just headaches when I was a teen.
He started me on topiramate which worked but upping them within two weeks to the recommended dose was awful. So I discussed it with him. And it took me a year to up them completely. I’m still on them, I very rarely get migraines now compared to 3 a week.
I was given naratriptan which I could take when I was busy and unable to go and lie down. And rizatriptan when I was able to go straight to bed.
They did query hemiplegic migraine twice before topiramate also.

It’s a great preventative if your Body either copes with the side effects or you can come up with a plan with a Dr or specialist.

edit to add instead of taking any topiramate in the morning I take it at night.
Also the gp had me try a few other things before they would even consider a referral. I was 13 when I first saw a gp about migraines, and mid thirties before the gp referred me to a specialist 😖
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I had to beg to come off Topiramate. Sure, it worked but the side effects were awful. I'm (I understand this is incredibly rare) mildly deaf because of it.

I'm now on pregabalin and the side effects are somewhat better. Hate the weight gain though.
 
Melian said:
I had to beg to come off Topiramate. Sure, it worked but the side effects were awful. I'm (I understand this is incredibly rare) mildly deaf because of it.

I'm now on pregabalin and the side effects are somewhat better. Hate the weight gain though.
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Gosh that’s awful side effects. Must admit on top of my other disabilities I did feel rubbish upping the dose so quickly. Thankfully no major side effects though.
Pregablin and gabepentin made me feel drunk and slowed down. I couldn’t cope with either of them.
I hope you’re feeling a bit better now
 
Does anyone with lung problems (I don't have a diagnosis; but chest clinic say it's not asthma) and take beta blockers with no problems? I've talked to my surgery twice about this in 2 weeks and it's been the same person who doesn't seem to grasp my concerns about my breathing. I have days where I can't walk to the end of the road without problems. Apparently, I can just come off it and I'll be fine? That's not the point - I don't want to make my breathing problems worse. It says on the NHS website that those of us with lung problems shouldn't take it.

Because it is my breathing, I don't want to take that risk. I mean, I've had problems with constipation, (ok, I broke my ribs and it was so painful; but it generally isn't) weight loss / gain, etc. which do cause problems but aren't generally that serious.
 
I have tried to participate in a drug trial twice in the last 2 years and both times got booted off as I got a migraine and vomited. It's literally the only time it's happened. After the 1st time I thought it might either be dehydration or caffeine withdrawal so the 2nd time I went on a trial I made sure I tapered my caffeine 1st and drank lots of water while there. Exactly the same thing happened, 24 hours after arriving I got a migraine and then vomited. I'm now pretty sure it was the lighting in there that was causing the problem for me, something to be aware of if you work in an office or hospital.
 
Notworthy said:
I have tried to participate in a drug trial twice in the last 2 years and both times got booted off as I got a migraine and vomited. It's literally the only time it's happened. After the 1st time I thought it might either be dehydration or caffeine withdrawal so the 2nd time I went on a trial I made sure I tapered my caffeine 1st and drank lots of water while there. Exactly the same thing happened, 24 hours after arriving I got a migraine and then vomited. I'm now pretty sure it was the lighting in there that was causing the problem for me, something to be aware of if you work in an office or hospital.
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I used tae work in an office and would get weekly migraines because oh the poor lighting wae bright white bulbs and the cheap white blinds that didnae block oot the glare fae the sun. It wis such a relief tae work fae hame as ah get slightly less migraines noo.
 
Omg this! I once had my old boss say to me now try not be sick with a migraine Monday ? I was like sorry I can’t pick and choose what days it will come on . She repeatedly kept coming back well don’t do anything over the weekend what normally brings them on 😭 so insensitive as if I would bring one on intentionally people really don’t get it . Sorry for my rant lol but I’ve suffered around 15 years now and recently started taking Imigran (sumatriptan) and it’s worked for me straight away x

I find the lack of understanding around migraines both from the professionals and from family/friends/colleagues who don’t suffer from them so disheartening. Even after al these years some people really close to me think they are headaches.
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Taking those dried mushrooms. I take them when I have a migraine. It doesnt help the symptoms but seems to be helping the frequency of them.
But mainly my triggers are broken sleep, dehydration or bright light.
I will continue with the dried mushrooms
 
I had migraines regularly from my mid teens to mid twenties, then it switched to near-constant headaches. Now I'm back with a weird mix of both, as of about a year ago - I have naproxen for my headaches and sumatriptan for my migraines. Sumatriptan has about a 50:50 success rate for me. My migraines are definitely not as bad as some here - I get an aura, tingly or numb arms and pounding head, nausea sometimes. I can usually sleep it off but had one last night and have had a banging headache all day. I think my triggers are stress, lack of sleep and generally not looking after myself properly. I've been in a bit of a slump the last few months and I know I need to pick myself up but it's a struggle.
 
bcfc999 said:
I had migraines regularly from my mid teens to mid twenties, then it switched to near-constant headaches. Now I'm back with a weird mix of both, as of about a year ago - I have naproxen for my headaches and sumatriptan for my migraines. Sumatriptan has about a 50:50 success rate for me. My migraines are definitely not as bad as some here - I get an aura, tingly or numb arms and pounding head, nausea sometimes. I can usually sleep it off but had one last night and have had a banging headache all day. I think my triggers are stress, lack of sleep and generally not looking after myself properly. I've been in a bit of a slump the last few months and I know I need to pick myself up but it's a struggle.
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I find the aura part worse than the actual headache.
Anyone who experiences an aura migraine has my sympathy.
 
Kim Mild said:
I find the aura part worse than the actual headache.
Anyone who experiences an aura migraine has my sympathy.
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My visual auras are quite short, but very aggressive. I have been trapped in many a parking lot waiting 30-45 min to pass before regaining my vision (rapidly moving zig-zags with traditional, all vision in my left eye for retinal migraines). If I don't take my rescue med to "abort" the migraine when I have the visual aura, the pain will set in for days and often be completely unresponsive to meds. It took me decades, dozens of RX meds and all my money to figure it out though.
 
I would recommend magnesium supplements alongside the prescribed preventative meds. Since I started the supplements last Oct I’ve had far fewer migraines. It might be a placebo but it’s working for me!
 
Hormonal migraine:

Aside from the pill (there are certain types you can't take if you have migraine) and the injection, does anyone else know what's ok to take? I've been pestering my GP about this for the last month and they've not even discussed it with me.

Struggling so much at the moment. Wasn't too impressed that I've had to beg to come off Pregabalin (it doesn't work and I've needed to come off it for the last 2 months - it was just increased instead) and had to beg to change what I take when I do have migraine. Can't have nasal sprays as I just end up with sinus problems and Sumitriptan just causes Raynaurds. I ahd to do my own research as to what else was out there.

Nothing has been put in place now that I've come off Pregabalin. I was told I should be seen by neurology soon. Unlikely. Still waiting for unrelated referrals that were made in February.
 
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