Migraines - end of tether

[ProcastinationStation]

I am 46, I have suffered with migraine for 23 years. I go through 12 sumatriptan per month (50mg). I get no aura, just intense pain in temple and lump in back of neck and cannot lie down as pain much worse. I can walk about when they're not too bad but I'm miserable and had enough.

I get them in the middle of the month, during my period. If I sleep in, without the window open or the heating on. Wear too tight clothing (especially bra). If I drink alcohol (but not every time). And other random times.

I have tried:
Acupuncture
Propanalol
Domperidone
Rigid sleep pattern (heating off, window open)
No alcohol
Mini pill to regulate hormones
2 litres of water
Keeping active (I am a healthy weight)
Magnesium
Herbal hormone tablets
No tight clothing
No paracetamol (apparently these can trigger a migraine)
And probably more things that I can't remember.

Seen several neurologists and GPs they all differ in opinion but now on blood pressure tablets in the hope that they would help, but I've been on them for a year and I don't think they do.

I'm still here, with the same amount of migraines per month, the pain has not increased. They haven't really changed enough for it to be sinister.

I just want this to change and I don't think they will. Anyone else in my boat or has some amazing fix???

Bumping for the daytime crowd

Any reason you've not had more preventative medication? From what I have you describe, you're in chronic migraine territory.

There are a LOT of options. If 3 have failed, you're eligible for Botox. If that fails, there are the new CGRP meds. I would u jabs expected your GP to follow NICE guidance before referring to neurology and neurology to follow the guidelines as well.

cks.nice.org.uk/topics/migraine/management/adults/#choice-of-preventive-treatment

Also, how many triptans are you taking on each of the how many days? I'm not clear.

There is specifically guidance in NICE for hormonal migraine.

They would only give me Botox if I tried topirimate but my gp and the neurologist thinks the side effects would be too much for me (I also have a mild thing with my heart).

I looked into it too, but the reviews are mixed so I decided not worth it.

Topiramate is horrific and I'd never take it again, but there are a LOT of other options.

Try the Botox if it's on offer - it helped me no end to begin with but wore off over time. I had about 9 applications before asking to move to CGRP.

I sometimes can get rid of them in one tablet. Sometimes they come back in the day or the next day. I always need to ask for a another 24 every 2 months.

The neurologist mentioned that more than 10 days of taking in a month can show dependence, doesn't matter how many I take in a day. But I'd say I'm sailing close to that every month.

You need to read that NICE guidance, and take it with you to see the GP. There are plenty of options available to you.

You can also ask for a new triptan. Frovatriptan is much longer lasting and is frequently prescribed to people who see their migraines come back quickly. That's why I'm on it.

Also, hormonal migraine - they can prescribe frovatriptan as a preventative to be taken on set days of your cycle. It's very common, but you'll need to be monitoring your cycle obviously to know when to take it.

GPs and neurologists have let me down for years. I now go in armed to the teeth with research and evidence for what I want to do next.

Have you tried HRT? It stopped my hormonal monthly migraines x

Sorry have no help to offer but following as Ds (15) has been on topiramate for 4 years but it’s not as effective as it used to be.

@nicky2512 hours many migraines is he having whist on topiramate?

Migraines are the devils work.
I still get them but I can minimise them by having gone completely off dairy and sugar and processed foods
No citrus or tomato either
Triptans at the first sign
It’s incredibly hard I know, the hormonal ones especially. I find yoga and was swimming can help too, but none of the above are completely fail safe.

Hi, have you had any blood tests? I have similar to you- wake up with migraines, didn't get any warning, and get them beginning and mid cycle.

I recently found out I'm deficient in B12. Since taking high dose supplement and having a couple of B12 injections my hormonal migraines have been much easier or less frequent. I was going through 6 zolmitriptan each month, sometimes more. I've managed with paracetamol and ibuprofen recently as they often have warning signs and a slow build up that I can nip in the bud.

I would ask to try another triptan.
Frovatriptan is great for me.

I had absolutely debilitating migraines for years. Cut gluten out of my diet and they went away.

I found a v shaped pillow I was using to support me when sitting in bed with a wooden headboard that wasn't comfortable to sit against was adversely affecting my neck and I was having extra migraines (in addition to the hormonal ones around ovulation and immediately before a period) that went on for days. I didn't realise for ages. So look at your posture, etc. For me a footstool is better than putting my legs up on the sofa too.

I've tried three preventatives. The last was amitriptyline but I felt awful in the mornings, really groggy, and it worked for a while then stopped having any effect.

Daith piercing got rid of migraine after suffering badly for years. Worth a try.

Hi Op,

I had preventative medication called Pizotifen for mine. They didn't completely go but the improvement was amazing. They did make me slightly drowsy but I kept to a rigid routine as like you laying in was a big trigger.

Hope this helps, I truly sympathise

The menfolk in my family have materially reduced the number and severity of migraines by converting to a ketogenic diet, and sticking to it. This has been more effective than prescription medications.

I have also managed BP from switching to the same diet.

Think about whether your overall diet is contributing to poor health, via poor metabolic health.

I'll look into all these things, thank you.

I have cut out gluten, due to IBS.

I have always been a headache person - got lots when younger. Also have a lot is stress but trying to reduce that.

So much has changed over the last 23 years, including several changes of jobs and industries/working hours, marriages, house moves, lots of pregnancies, several children, breast feeding, varied health diets and too many things to name. And the one thing that hasn't changed is the migraines....

I think it's my genetics and I need to take something to counter it.

I've tried b12 too.....

No advice but lots of sympathy. I never had them as badly as you but they’ve almost completely stopped since menopause.

I assume they also told you to take high dose B2? I take all the supplements, as recommended by my neurologist. Not sure they work for me but they do for lots of people.

migrainetrust.org/live-with-migraine/healthcare/treatments/supplements/

Nothing else to add to what's already been mentioned, but wanted to say you're not alone!

I've been a migraineur since my teens. Getting worse now heading for peri menopause. I resisted drugs for years as too frightened of the side effects but one day I snapped and took half a sumatriptan. It was a revelation- wish I'd been brave enough to try years ago. I still get too many migraines and like you, have to live a rigid, boring life but the sumatriptan saves me on most occasions if I'm quick enough to get it on board with 2 pink migralieve tablets.

Currently experimenting with reducing sugar...........fingers crossed!

@RedCarsGoFaster He has only the occasional really bad spell lasting for days but he’s never 100% ok. He’s sore at some point every day and often has a “funny head” and vision problems. He would get very tired and his concentration is a bit off at times.
He was really bad last month for about ten days. It was awful.

Side effects from the topiramate aren’t great but doctor says it would be big thing to take him off and onto something else.

You shouldn't be taking that many sumatriptan as there is a link to heart issues with it. You need a daily medication to reduce the frequency of the attacks first - this is what a neurologist would usually focus on.

I had chronic migraines for ten years and a strict routine is what works for me now:

• 10mg Amyltriptan every night at 7pm as well as magnesium
• Bed and asleep by 10pm
• ALWAYS get up up at 6.30am...no sleeping in...ever!
• Daily exercise at 7am - Peloton or dog walking for me...it has to raise the heart rate and give me a lift
• Rizatriptan if I get a sense of a migraine coming on

And reduce things like milk, eggs and chocolate...only eat sweet things in the evening when bedtime is near. I also minimise carbs throughout the day to keep my blood sugar steady.

I only get a migraine 3 or 4 times a month now and that is a massive drop from the almost daily agony. If I didn't have a migraine then I knew there was always one around the corner. I also avoid alcohol and I always know what I've 'done wrong' when I do get one.

One thing I have learned is that every migraine sufferer is different: there is no one size fits all treatment. There was a TV programme about migraine on recently - I think it was on Channel 5, but not sure. If you can find it on catch up it's worth watching.