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Original poster

migraines - anyone tried anything new

57 replies

strawberryblondebint · 27/12/2015 15:09

My life is being ruined by migraine or cluster head ache. Triptans work but I could easily use a months supply in a week. Amatriptaline worked at first to prevent them but I put on a stone in weight and kept falling asleep in the day. They are def worse around period time but not always. I am at my wits end. Normal painkillers don't touch them and I frequently end up in tears with the pain. Has anyone found a cure that they want to share. I can't identify any food triggers. I'm no more stressed than normal. I sleep well. If one takes hold and I don't take a sumatriptan in time I could be 16 hrs at least of pain and I swallow so many different tablets I could overdose bit I'm desperate. I had some success with soluble asprin but Again not always. Help please

OP posts:

museumum · 27/12/2015 15:15

Head neck and shoulder massage regularly.
I have really bad migraines which respond to early sumatriptan but the only thing that prevents them is a lot of work on my neck muscles and the bit where my skull meets my neck.

LizzieVereker · 27/12/2015 15:20

A friend of mine suggested that an ear piercing technique might work. The article below suggests that there's no solid evidence that it does work, but like you I'm getting so desperate I'm considering trying anything. I'd be interested if anyone knows any more about it. I suppose it's like a permanent sort of acupuncture.

piercing to relieve migraine

antimatter · 27/12/2015 15:20

Insist on seeing soecialist.
My SIL did and it transpired tha all her headache are due to her neck being badly affected by her terrible sitting arrangement at work.
She had CAT of her neck and is now seeing physio.

Acorn44 · 27/12/2015 15:24

Mine improved a lot after staring to use a low dose, bio identical hrt patch. It stops the estrogen dip which triggers my migraines.

Twinkie1 · 27/12/2015 15:35

What about beta blockers?

Original poster

strawberryblondebint · 27/12/2015 15:39

Tried beta blockers and no real improvement. The massage is a good idea. Actually I'm interested in the posture thing. They have definitely got worse since I have had a desk job. I'm going to go back to the doctors. Last time she offered me contraceptive pill but I have a copper coil and would rather not be on the pill. I could only ever take the mini pill anyway due to bloody migraines. My neck is frequently sore. I have a tempur pillow but it hasn't made a difference.

OP posts:

TheCountessofFitzdotterel · 27/12/2015 15:39

An old one not a new one, but have you ever tried feverfew? It works better for me than any of the conventional medicines I have tried. However, it sounds like yours are far worse than mine- sorry to hear you're having such a bad time x

SofiaAmes · 27/12/2015 16:02

My ds (15) has been getting severe intractable migraines since he was 10 (part of a genetic disease he has). Because of the genetic disease, he can't take any of the normal medications prescribed to end migraines (vasodilators). The last time he got one (April 2015), we went to the neurologist and she asked if she could try a new procedure that she had just heard about a few weeks before at a neurology convention. She tried it and it worked!!!!!!!!

It's a device called Sphenocath and it's used to deliver lidocaine straight to the sphenopalatine ganglion at the back of the nasal passage (which I believe then allows a crossing of the blood brain barrier). It numbs everything and then in 15 minutes when the numbness wears off, the migraine is gone!!!! Unlike most of the migraine medications, there are no side effects.

This is a link to their website. We are in the USA, but I believe that it's available in the UK as well. It's very low cost compared to the usual medications, and easy to use so can be done by a nurse so likely to become widely available.

The above is a treatment for when you have the migraine. If you are looking to prevent the migraines happening in the first place, I would recommend trying hormones (like birth control pills) as for some people (like myself), the erratic production of estrogen in your 40/50's can cause migraine.

Readysteadyknit · 27/12/2015 16:15

I was going to start a thread about this as DD is really suffering with a combination of migraines and constant headaches. She has been prescribed rizatriptan (?sp) by the Migraine Trust which stops the migraine but knocks her out for 24 hrs and has terrible long term side effects.

Insist on seeing soecialist.

How does one insist on anything- we have found doctors quite ignorant about migraines but unwilling to refer her. We paid the Migraine Trust privately but can't afford it at present

Readysteadyknit · 27/12/2015 16:21

Just read the article on daith piercing- does anyone know where you could get this done?

derektheladyhamster · 27/12/2015 16:28

My D's suffers badly (15). He's on topiramate for prevention, and he's just started 100mg of CoQ10 which is meant to reduce the frequencies. He's getting them on average once a week and missing way too much school in his GCSE year. Sadly I think its partly due to stress over his work, I've got him some rescue remedy to help calm him down. I've also started giving him a teenage multivitamin as I've read that magnesium helps too.

Naoko · 27/12/2015 16:32

For me propanolol (a beta blocker) has been amazing. I've also been on topiramate which did work but I could not deal with the side effects. It works well for many people, but needs to be prescribed by a specialist, I believe GPs cannot prescribe it.

You really do need a neurologist when you get to this point. I have had some success in the past when I've wanted a referral by politely explaining the history, the many things that have been tried, and stressing that it severely impacts my life. Then saying 'and for all these reasons I would now like to access specialist care, would it be possible to refer me'. At that point they either say yes (usually), or no but explain why not - and then we can have a conversation about their reasons for not referring, and if I disagree I can point out why I think the referral would help on those points.

MiscellaneousAssortment · 27/12/2015 16:33

Anyone done Botox for migraines? I have to try Topiramate and if no luck, my neurologist is suggesting Botox - no idea if it will work as a lot of the migraines are referred pain from where back of neck meets skull ... It really would be treating the symptom not the cause.

CantSee4Looking · 27/12/2015 16:34

I used to have really bad migraines. Chronic scary ones with the stroke like symptoms. I have only had two since I introduced magnesium (in a multi vit with epsom salt baths) and vitamin D (in a dose higher than most multivitamins) It has been a nice simple change which is a relief as I was reacting left right and centre to all the migraine preventors they were trying me on and some of the side effects were horrific. Only 6mths in so I wouldn't like to say that it is either a permanent solution nor that it would work for anyone else. But fingers crosses it continues to work for me as I dread having to go back on the preventors

SofiaAmes · 27/12/2015 16:43

I should add that my ds used to get migraines every few months (from the age of 9 or 10) until he had his mitochondrial disease diagnosed and the geneticist put him on a cocktail of supplements consisting of high doses of L-Carnitine, CoQ10 and Riboflavin. He also takes Magnesium, Vitamin D, Omega 3's and Krill Oil. Now he gets a migraine once every few years. You can read more about mitochondrial disease and migraines here.

TheWildRumpyPumpus · 27/12/2015 16:52

I take Topiramate daily as a preventative.

Also have lidocaine/steroid injections into my occipital nerve.

MimsyBorogroves · 27/12/2015 17:02

Topimirate worked really well for me, but gave me awful anxiety. I was on 200mg a day.

I'm currently on propranolol and it seems to be working, but I've already slapped weight on around my middle to the point where I'm pondering going back on topimirate and an anti depressant.

Beechams powders are my go to drug of choice but I have to sleep to have them work. They seem to get into my system quickly - I will often take with Coke. (Cola, not cocaine. )

trinity0097 · 27/12/2015 17:39

Mine went when I was diagnosed t2 diabetic and I cut out all carbs.

MyBeloved · 27/12/2015 23:09

I'm on just 50mg topiramate per day which is holding them at bay currently.

MiscellaneousAssortment · 28/12/2015 00:05

Am on Amitripytaline (sp?) and take Propranolol when needed for heart palpitations, so may have some migraine effect?

Am somewhat iffy about Topiramate as its side effects sound extreme and potentially lasting?

EasterRobin · 28/12/2015 00:13

Ok so this is going to sound a bit meh but it honestly helped cut down the number of migraines I have. Supper. Something sensible to eat just before bed, like a banana/porridge/toast/leftovers. I think the theory is that it keeps your blood sugar a bit more even. It's no cure-all but I was surprised it helped so much since I'd never had it suggested to me until last year.

EasterRobin · 28/12/2015 00:14

I'm now reading this thread with interest for the times when it doesn't help.,,

Imnotaslimjim · 28/12/2015 09:21

I suffer too, they pretty debilitating

I've found standing in a bath of ankle deep hot water and turning a cold shower on over my neck/head works wonders. And try ibuprofen gel capsules, they're absorbed quicker and the anti-inflammatory properties works wonders

Readysteadyknit · 28/12/2015 11:26

Just wanted to bump this up as I've learnt so much - hoping for other suggestions to pass on to DD.

Original poster

strawberryblondebint · 28/12/2015 14:53

This has been really helpful. I am going to try vit d and magnesium and go back and beg for a referral from the doctors. I am about to start a course of studying whilst working full time and I can't afford the time off for migraine after migraine. Thanks everyone

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