Migraine long term treatment

[bellamountain]

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)?

I take amitriptyline to prevent my migraines (they got worse as I became perimenopausal). It knocked me out for the first week or two, but I stuck with it and that side effect that did wear off and I function fine in them now. I take 30mg now and have less than one migraine every 2 months now.

I have the migraine injection Ajovy but there is very strict criteria for being eligible for it, how many migraines per month are you currently getting? The guidelines with Sumatriptan vary so much but it is definitely agreed that they cause rebound headaches with overuse (more than 4 per month).
I also take topiramate and it definitely causes the feelings that you are experiencing in the first few months but stick with it if you can it does get better.

@UnfinishedBusiness does it cause weight gain? That's something I read along the long list of side effects. It just scared me how much they knocked me out, I was completely out of it the day after taking them too.

@matthancockscareer what is the criteria for the injection?

I could have written your post. I take magnesium and perimenopause vits. I've had propanalol, amatriptaline (sp?), several others I can't remember, acupuncture, massage, diets, mini pill, you name it....nothing works.

I have been taking sumatriptan for 20 years - i probably get rebound headaches but I cannot live without it.

I started another thread on the weekend about a rare aura, and several posters suggested aspirin....not tried this lately but have a look on my thread - might help....

Have you contacted the nationational migraine centre for help? It’s free service and they have really helped me. It was a 45 min appt and they went through my medical and they will discuss things which you shook me try. They will send a letter through which you can give to your gp. They will ask for a donation as it’s a charity.

Have you tried migraine Botox? I’ve had my first dose , I had it done through the National migraine centr (it wasn’t free) and you do need a second dose. It was improved the frequency of my migraines. I do also rely on topiramate and sumitriptan

I have been on Candesartan for a few years and it has worked very well to reduce the frequency and severity of the migraines that I have. I occasionally have real humdingers, but Candesartan has been a game changer for me. Good luck OP

I’ve tried four or five medicines now. Didn’t suit any of them. But Topiramate was the worst, I was so sick and nausea and brain fog. Absolutely appalling and I tried them for months to see if it would improve.
I now have a GON block in my head which helps and just started candesartan to go with it.
hope you get sorted.

I'm in a similar situation as @UnfinishedBusiness I suspect that they think that your having more migraines due to the peri and want to get on top of it now I just don't understand why they wouldn't explain this to you.
Oh it took 3+ years of messing around with my meds until they realised they'd forgotten to try anatriptyline and it works a dream for me but it can take a couple of weeks to get used to it and not feel like a zombie the next day. If you persevere you should find the right meds for you

@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.

You can buy sumatriptan from most pharmacies if you ever need it. It's called migraitan,

You should never have more than 2 Sumatriptan a week or 6 a month. Any more than that promotes overuse headache.

When I used the most Sumatriptan I could almost feel it prolonging my migraine so I took more and more.

There are so many migraine preventers out there now that there is something for almost everybody. Whatever treatment you name on Mumsnet, someone will say it is the worst thing ever but someone else will have thought it was lifechanging.

I tried Amitriptylline - too drowsy (but I know people who love it), Topiramate - was OK and did work (a GP friend said she wouldn't wish it on her worst enemy), wasn't suitable for Propranol or Candesartan (my neurologist told me the dose of Propranolol he took and it was huge.

I'm pretty settled on Botox. I think the injections would probably be better but I'm happy where I am.

I have Amitriptyline and Sumatriptan

I've tried every preventive medicine available with various degrees of success - am now on erinumab (one of the new injections) This has reduced my migraines from 4-5 to 2-3 per week which is better but still pretty difficult to live with.

For the past 6 weeks I've been doing a low histamine diet and taking dao head tablets to try and get my migraines under control. I'm very surprised to find that it actually seems to be working! I've had a few headaches whist on it but they've been less severe than others and have gone when I've taken a triptan - I haven't been completely wiped out with a migraine for 6 weeks and have now had 2 weeks with no migraine at all. That includes today where I've had a really long all day meeting with an hour's drive at each end, normally that would be a definite migraine but my head is good! It's quite a restrictive diet but is manageable. The dao head tablets seem to be important to take alongside the diet, I'm now starting to explore whether I can introduce some higher histamine foods and how that works to get to something that will work longer term.

@AnnaMagnani where is that stated re: Sumatriptan?

Over use headache is a big issue in migraine - there are only 6 tablets in a packet for a reason.

I was told this by my neurologist who was v keen to emphasize the point, he's head of migraine at the National Hospital for Neurology so I think he knows his stuff.

The Migraine Trust leaflet says overuse headache can develop if you use triptans more than 10 days a month.

I found it easiest to count the 2 a week, 6 a month to know I wasn't overdoing it. Especially as detoxing from them was absolutely horrific and I never wanted to do it again.

migrainetrust.org/understand-migraine/types-of-migraine/medication-overuse-headache/

Sorry I am using this thread to ask my own question:

I have been getting migraines since the birth of my second DC. My triggers are my period (I'd say I'll get a migraine 8/10 times) and fatigue (unpredictable) so it's not too bad, I will get one a month in average. Sumatriptan works generally super well and I have literally been given the drug by my mum who's a long time sufferer but lives abroad (I know she should not have given them to me and I shouldn't have accepted but here we are I was glad to have them when I needed them).

I'd like to get my own prescription however, how easy is it to get it prescribed? Preferably the nose spray as the oral one makes me nauseous when I am in a crisis.

Thanks 🙏

I found it really easy to get on prescription, and I’ve had it on repeat for a few years with no fuss. I get two boxes a month.

Interesting about the low histamine diet and dao tablets. I have no idea what this is! Would you have a link that explains it pingster?

I have pretty bad migraine, my triptàn use has become excessive - was up to around 10 a month - so obviously causing rebound.

I tried beta blockers and amitriptaline which made no difference et all.

Started taking epitomax 4 months ago, which I think is the same as topirmate (am in France). It has majorly reduced my migraines - to 4/5 triptans a month! It's been wonderful. But this month has been worse again, I've taken 6 and it's been a short month.
I'm wondering if I need a higher dose. I take 50mg.
What dose do others take?

I have Botox every 3 months, changed my life. I don't get on with sumatriptan, I have rizatriptan (maxalt) makes me feel like hell for 30 mins and then I feel like a new person. I'm surprised you get prescribed so many triptans? I can only order 6 tablets once a month?

I don't think I could live without Botox, I have it on the nhs.

DD uses nortriptylline 50mg at night which works really well for her.

@Jenniepearse I had no idea I could contact them. I will look into it, thank you.

I used to see a migraine specialist when I was a child when they were very severe. I used to be very sick and miss days from school. They actually stopped during puberty and then came back again in my twenties and ever since.

@pingster that's very interesting. I hadn't actually heard of a low histamine diet before. I do have certain food triggers however. Onions and leeks in particular are a big no.

The National Migraine Centres donation is approx £300 according to their website. Dispersible aspirin in full fat coke used to work for me for a while but now I've just started on propranolol as I didn't like the idea of the drowsiness with amytriptiline and so far it seems to be working! I was having 3 day migraines in succession on almost a weekly basis.

I started taking dolovent and feverfew 3 months ago. The first month was no different, but definitely a reduction since. This is the week before my period where I would usually get a lot of headache and migraine, but I have only had one headache. Trouble with starting them together is not knowing if it is only one of them helping. I get triptan resistance after a while and the third type I am on is now having less effect. Beta blockers stopped me sleeping and I refuse to try the coil.

Topamax literally ruined my life. It changed my personality, it ruined my head, I had to quit my job because of it, it made me anorexic (I could only eat 3 crackers a day!), it caused so many problems and almost lost me my marriage.

I was either 1) dizzy on propranolol or 2) sluggish (fucking useless).

It took 2 weeks for Topamax to leave my system and thankfully I was back to my usual self. But my consultant issued an apology for prescribing it and said its well known for changing your personality and causing eating disorders. And can make migraines worse!!

I haven't found anything that works because of all the side effects involved.

But my consultant has also stopped me from using Sumatriptan too! Has new information come to light about the drug?

Everyone (I have a 2 neurologists) want me back on amitriptyline. But I can't function on it.

Botox has definitely helped me but its £250 a go (nhs deffo won't pay!)

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)