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Migraine long term treatment

48 replies

bellamountain · 28/02/2023 09:57

Can anyone tell me why, after 20 years, my doctors are now looking at various preventative treatments for migraines when I've been taking Sumatriptan all this time? I'm in my early 40s now and must admit my migraines have been pretty horrendous recently but I've been a lifelong sufferer (since a small child). They are saying Sumatriptan could be causing rebound migraines? The thing is, if I have a migraine, I want something that works and 9/10 they will eventually kick in and I can get on with my day.

I've recently been prescribed beta blockers (did nothing) and then Amitriptyline which I had to come off because they would literally knock me out and cause severe drowsiness (they didn't feel safe to take with children to look after). I'm now on Topimirate and to be honest they are making me feel rubbish too. I don't feel switched on at all, I feel like my head is in a fog and very very tired / not safe to drive. Does it get better? I can't function like this if the symptoms don't improve? I'd rather just take Sumatriptan when I have a migraine.

Has anyone had the migraine injection?

Maybe my Sumatriptan repeat prescriptions were excessive but taking another medication daily can't be good either (when it makes you feel like you can't function)?

OP posts:
AmberGer · 01/03/2023 22:00

My migraines had slowly been getting worse over the years. I am on sumatriptan but also tried Amitriptyline and topirimate without much success.
I was starting to get them most days.
I also noticed (well DH did) that my snoring was getting worse. I went to G.P. and due to symptoms he's referred me to a sleep clinic for potential sleep apnoea.
A few weeks prior to my appointment I had started a fasting diet. In a short amount of time I've shed almost 2 stone (my weight has been creeping up over the past few years and I was very overweight). Since the weight loss. I'm not snoring much at all and I've only suffered 1 migraine in that time. I asked Dh and I had been snoring very loud the previous night which makes me realise how much my weight/ snoring/ migraines are linked.

PullingAtTeeth · 01/03/2023 22:01

Following with interest after many failed treatments. Sigh!

Heytheremigraineface · 01/03/2023 22:04

Has everyone been able to continue working full time? I've really struggled with it.

😔 Dopamax made so ill and strange. I quit my role in haste because I suddenly couldnt read or write. I work in an industry where mistakes are huge. I was so scared I quit.

My migraines cause weakness so sometimes I was stumbling at work / couldn't walk / couldn't see / dribbling = humiliating!

kitcat15 · 01/03/2023 22:06

matthancockscareer · 28/02/2023 21:00

@bellamountain you have to have failed 3 or more migraine treatments such as topiramate,amitriptyline,Botox and have 4 chronic migraines per month. Do you have a neurologist as it can only be prescribed by them, so definitely worth getting a referral from gp if you don't already have one.

My DD has these monthly injections after failed botox and acupuncture and preventatives.... she's under the Walton neurological Centre in Liverpool ....they are delivered by courier to her house every 4 months....she keeps them in the fridge....they have worked wonders

CeeCeeDeeBee · 01/03/2023 22:09

I've tried all the preventative meds and had bad reactions to all of them. Am now on nortriptyline (grim) and awaiting seeing a neurologist.

I take Zolmitriptan, the only triptan so far (I think I've had four to date) that seems to work. I'm prescribed loads each month because I have to take three a day for five days around my period.

Needless to say, I feel shit a lot of the time. Topiramate was the worst, literally turned me into an anxious, borderline suicidal mess. Got quite thin though.

Heytheremigraineface · 01/03/2023 22:13

@CeeCeeDeeBee same!

Can't believe they prescribe it to kids as well. Can you imagine? It breaks my heart. The neurologist joked "if you type 'topiramate into Google it'll autocorrect to ....topiramate ruined my life'"

I didn't find it funny.

MissMaple82 · 01/03/2023 22:18

Heytheremigraineface · 01/03/2023 21:56

Sorry for my long garbled message. I had a lot of info to get out as quickly as possible 😂 (I just worry about people on Topamax / Topiramate)

I've been on Topiramate for a year and been absolutely fine. Just because one person has problems doesn't mean the next person will

AC2022 · 01/03/2023 22:20

I agree with @UserID59272626 in terms on Candesartan. It’s usually used for heart failure or high blood pressure but it can also be prescribed for migraine prevention.

I used to have awful migraines that gave me about 25 minutes between visual auras and full blown incapacitating migraine which really made life difficult sometimes. I had one on Christmas Day as I was leaving to go and spend it with my family, and another a few weeks previously when I had to just leave my car in a random car park and get a taxi home before it kicked in. I prefer the preventative approach, otherwise it was a case of taking an antiemetic quickly and then hoping that pain killers would kick in before the pain hit with full force.

Heytheremigraineface · 01/03/2023 22:24

It's more than "one person" having problems. As you can see from online and this thread too.

I would suggest you're in the minority and that's brilliant. 😊

MrsT007 · 01/03/2023 22:24

I’ve tried all the usual preventative stuff and nothing worked. I wanted to pop on here to say, anyone suffering - have you had your B12 levels checked?

When I was last on Topiramate (2014) it gave me tingling fingers and toes. The GP wanted to rule other stuff out so did blood tests and found my B12 levels were really low, they also continued to decrease over like 4 months so I ended up on 12 weekly B12 injections at the doctors.
I started these in March 2015 and am convinced that’s what has helped my migraines.

I’ve gone from 4/5 really debilitating migraines a week, to maybe 1 every 2 months and rarely are they are the same debilitating level that they were.

May not work for everyone but worth having it checked!

CC222 · 01/03/2023 23:24

Hey,

Firstly sorry for the long reply, I just hope I can help in some way.

I completely empathise as I've suffered from migraines since I was 11, and I'm now almost 38. At points my migraines were chronic so I was getting them daily and I too was heavily relying on sumatriptan during those times. I was on repeat prescriptions for 12 pills at a time, and I was pretty much taking sumatriptan almost every day, quite often 2 or 3 would be needed to finally nip the migraine in the bud but it was leaving me with horrible side effects such as feeling groggy and severe pains in my muscles, but I would have preferred that over my severe migraines any day back then! I was ordering new prescriptions every week and they were signed off by doctors continuously for a long period.

Eventually after probably 2 or so years of this cycle I had a doctor call me and say she reviewed my history and wasn't giving me anymore sumatriptan, I was so upset as I relied on this to work and explained this to her. She informed me I was on over 1000 times over the allowance of what anyone should be taking in a year period. I was absolutely shocked by this, and by how this had been allowed for so long. And it is true that it does cause you to get recurring migraines, it's a terrible cycle it brings you on and I think that's what made my migraines so chronic.

I reluctantly agreed to try amitriptyline and like yourself, I could not function on this. I was sleeping for 12+ hours a night, had no free time after coming home from work as I'd fall straight to sleep and would then be back to work when I woke again. I continued for a few months as I was told the symptoms would settle but they never did so I stopped taking that also, however it did limit the number of migraines I had a small amount.

I really was in a predicament because I couldn't rely on sumatriptan anymore due to the repeat prescriptions being stopped and limited amounts prescribed moving forward.

I had to take a serious look at what my triggers were, and there were many! I also had to look at alternative ways to treat my migraines moving forward.

I learnt that some of the following things triggered them (can't remember all anymore), so I done what I could to eliminate where possible:

Bright lights / long periods in front of computer screens without regular breaks / skipping meals / napping / not enough sleep / too much sleep / anything hormonal - periods, pregnancy etc / alcohol-hangovers / drinks with aspartame / certain alcohol like red wine... the list could go on!

When I had to stop prescriptive medication I looked at what else could help, and I found that aspirin is amazing for stopping migraines if you take it early enough before it turns into a full blown migraine. In all honesty, I know looking back I was taking aspirin far too often also, but being an over the counter pill I could buy and take as much as I needed.

I also heard about daith piercings (in the ear, please look it up if you haven't heard of its connection to migraine prevention). It's a piercing in an acupuncture point for migraines. I got my right ear done first, noticed my migraines were a little less severe but not that much had changed so I was in doubt of it's ability to help. But about 5 months later I got the left daith piercing done and I didn't even acknowledge anything until about a month later when I realised I'd only had a couple migraines and they were pretty minor in comparison to how bad mine normally were. After getting migraines daily for a few years, it had cut right back to one or 2 a month. Gradually over time I was able to cut out more things that triggered them, eg taking hourly mini breaks from my work computer to get water etc, and the amount of aspirin I was taking also lessened.

On the note of computers, or any screen time - tv/phone etc (and bright office lights/car LED headlights for that matter), the most amazing thing I found helped eliminate migraines was blue light blocking glasses. I now wear them all day every day even though my vision is fine, because it helps prevent migraines that were triggered by bright screens/LED lights. They're about a fiver, and it's the best money I've ever spent on an accessory!

My migraines are now better than they've ever been. I sometimes get a migraine when I'm on my period (had many during pregnancy but it was hormonal so couldn't be eliminated), and the odd one with stress. I would say I now suffer from a migraine every couple of months or so, and they are very rarely severe anymore.

When I feel a migraine coming on sometimes just a strong sugary tea can help as they're usually pretty mild now, and if it doesn't help some aspirin usually does it and maybe a cold gel pad on my forehead if I need something extra.

It really would do you so much good in the long term to try move away from relying so heavily on sumatriptan. I can't say whether the best thing for you long term is another prescribed treatment plan or something a little alternative, but if you're willing to consider all options I'd say do what you can alongside the doctors recommendation, such as daith piercings, blue light blocking glasses, regular acupuncture. I've also read that taking magnesium daily can help, try looking up vitamins that help with migraines.

I really do hope you find a way to get out of the cycle you're having with migraines, I truly understand how debilitating and depressing it can be. I would say anything is worth a try, to get you away from sumatriptan in the long run.

Wishing you all the best 🤞🏻 xx

matthancockscareer · 02/03/2023 20:05

@MissMaple82 I've been on topiramate for 12+ years and apart from tingly fingers in the early days I've not had a single side effect either!

WorkerBee83 · 02/03/2023 20:18

Long time migraine sufferer I’ve tried so many different prescription drugs that I’ve lost count my last resort is Botox!

parrotonthesofa · 04/03/2023 09:32

Also have no negative side effects from topiramate. It has reduced migraine frequency but it not a silver bullet.

bellamountain · 04/03/2023 20:48

Some really interesting posts on here and it proves just how complex migraine is.

I've been on Topimirate now for a week and I have stopped taking it today. I've had flashes of light in the corners of both eyes pretty much since I've started taking it, which can't be right? Very different from the lights and zig zags I experience from focal migraine, this is more like a camera flash and I have never experienced anything like that before. I was willing to give it longer and work through the fatigue and dizziness, however, as the week went on I've felt more and more dreadful (completely exhausted and out of it) and the flashing lights in my eyes has been pretty scary.

I am going to look at a Daith piercing and aspirin (which I don't think harms as you get older anyhow).

OP posts:
parrotonthesofa · 04/03/2023 21:28

I got a daith a couple of years ago. Zero effect.

Battlecat98 · 04/03/2023 21:29

My dd 15 has been having up to 12 migraines per month, including memory loss and weakness in arms/face/aura/double vision, initially she was prescribed a triptan but didn't get on well with it she is now on Pizotifen but cannot tolerate the full dose due to side effects, she is constantly taking migraleve and ibuprofen. Never had any scans only seen GP once in 3 years all phone consultations, she was seen in A&E for memory loss but as soon as they knew she had migraines they dismissed it as this.
I don't know what else to do she is missing so much school, she is year 10 and the school are on me but a migraine can wipe her out for 2 days.
I have secured an appointment with the national migraine centre as she is still waiting for NHS neurology.
No known triggers we can identify it's dreadful . I am worried the migraine centre will say she is to complex and wait for NHS but how long will that be?

Sorry to derail but unless you have had migraines others cannot understand. I suffered migraines but was so lucky I knew the triggers and rarely had unexpected migraines.

matthancockscareer · 05/03/2023 09:27

I've got daith piercings in both ears op zero effect too plus they're a bitch to heal! I like piercings so happy to have them but if they're not your thing I'd give it some serious thought.

TheFairyCaravan · 05/03/2023 09:51

I get horrendous migraines for which I take Sumatriptan for. My GP prescribes me 12 tablets a month. Lately I’ve been getting clusters of 5 or 6 a week, often waking up with them in the middle of the night.

I already take Amitriptyline because I’ve got other conditions and it helps with my nerve pain. Yes, it does make you drowsy initially but you do get used to it. I, also, take Topiramate and don’t really have any side effects from that either.

I have Botox every 3 months, on the NHS, which does usually help, but these past couple of months the effects have seemed to reduced quicker than normal. I’m on a Beta Blocker because I’ve got a fast heartbeat but that’s not helped at all.

In lockdown I had I consultation with the National Migraine Centre. They advised me to tweak my diet, go to bed at the same time every night (not always possible) and advised me to take Dolovent. The Dolovent made a drastic change to the number of migraines I had and their severity, tbh. She, also, told me to take 2 soluble paracetamol and 3 soluble aspirin in a glass of full sugar coke at the first sign of a migraine, which often does get rid of them.

Prior to lockdown I’d have acupuncture on a regular basis, for both my migraines and my painful joints, and it really helped. I’ve just, since last week, started it up again. Out of all the treatments I’ve had, and I’ve had a lot, it’s the one that helps the most. I was saying to DS1 that I needed to do something different because I throw far too many pills down my neck and they’re not working. I’m really hoping it gives me some relief again.

parrotonthesofa · 05/03/2023 12:07

Out of interest what dose of topiramate do people take? I am on 50mg but I read online that the recommended daily dose for migraine prevention was 100mg

parrotonthesofa · 05/03/2023 12:08

And that is interesting about the paracetamol AND aspirin in coke. Seems a lot. What dose of aspirin is 3 tablets?

AnnaMagnani · 05/03/2023 12:23

I think I was on 100mg twice a day. I had minor side effects of sometimes not being able to find a word - it was like there was a hole in my brain where the word should be - so I'd have to describe whatever it was I was trying to say.

This wasn't even every day and I managed to work as a doctor so it didn't get in the way.

Honestly main issue was my crapness at remembering to take it.

The Dolovent is interesting, my consultant recommended trying riboflavin and magnesium, would have been so much easier to have everything in one tablet.

pingster · 06/03/2023 10:37

My daughter also has terrible migraines and was missing huge amounts of school. She was referred to great Ormond Street and they have been fantastic. She has a greater occipital nerve injection every 6 months or so and that's made a huge difference to her migraines - I can't even remember when she last had a bad one it's been so long. And her attendance is now close to 100% - it was down nearer 70%

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