Migraines anyone?

[one2three4five]

Hi all,

I'm guessing there are lots of migraine sufferers out there, so was hoping for some advice

After seeing a neurologist and having an MRI, I was diagnosed with a Chronic Static Migraine about four months ago. I have been on amitriptylene for a few months now, and it was working well, but over the last few weeks, it is becoming increasingly less effective, and I am now back to daily migraines.

I have tried propranolol in the past for anxiety and not got on with it, so I am keen to avoid this. My next option is Topiramate, but I'm a bit wary of this drug- anyone got any experience of it?

Also wondering about daith piercing? Has anyone had any luck with this? I am not a fan of piercings at all, so am reluctant to try this unless I'm confident it will work!

To complicate things further, DH and I have been trying for a baby for 28 months, and while I am slowly giving up all hope of having a second child, I am also wary of any drugs that might impact fertility/be bad if by some miracle I do fall pregnant.

Not really sure what I'm looking for here, I guess my doctor is my next point of call, but I can't get an appt for four weeks, and in the meantime just wondered if anyone has any suggestions?

Thanks

Hi, long suffering migraine sufferer and I'm currently on topiramate and have been since October. Like you I started on amitryptiline for preventative and it was successful for a couple of years at reducing mine down to 1 every 3-4 months. Last year it just suddenly stopped working.

I was a big fan of the topiramate to begin with; I had not a single migraine between October and April - longest period I've ever been in 17 years without one! However I am continuing to struggle with 'clusters' of migraines and the topiramate isn't stopping that. So rather than just one migraine I will get them daily for a fortnight - and have to be off work. I haven't really suffered with side effects either. I'd say it is worth a go however .....

You are trying to conceive so you won't be allowed to have it. It carries a risk of cleft palate in unborn babies. My GP said if I consider attempting to conceive I will have to be weaned off it in favour of something else sorry OP, they really are the worst but they might be able to try something else. My own GP has finally referred my to a neurologist and I'm waiting for my appointment.

I take Propranalol and Pizotifen which have reduced my migraines from at least 2 really bad ones every month (2 or 3 days in bed unable to even sit up and vomiting every 10/15 minutes so have to have a Dr come out to give me an injection to stop me being sick) to 1 roughly every 5 months. The medication has made me put on weight though.

I know a couple of people who have had the piercing and it made no difference whatsoever. A couple of friends swear by acupuncture and if mine increase that is what I will try

I'm a frequent (3x weekly) migraine sufferer. The only thing that works for me is triptans.

I was on Pizotifen for about a year but it made me put on about a stone (and I was only six and a half stone to begin with) and it didn't have any effects so I got taken off it.

I also tried Flunarizin, but again, no effect.

I wouldn't get a daith piercing; there's no scientific evidence for it.

I take triptans when necessary, but my neurologist also suggested taking daily supplements; magnesium (can't recall the type, google as some can give you the squits), coenzyme q10, & a B complex. I think I get migraines as often as before but for the most part it's turned the symptoms down. Now I can at least make the decision to take a triptan! And the nausea is nowhere near as bad, nor the panic.

Thanks for all of your replies. Migraines are the pits aren't they?!

I thought that trying to conceive would complicate things The trouble is, if I had only been trying a few months then I'd take a break and attempt to get the migraines under control, but we've been trying for so long now that I can't give up, as it worries me that at whatever point we start again, we could face another few years of trying, and it will just go on and on and we'll be too old as my chances will naturally decrease with age anyway! Sorry-bit of a digression!

Acupuncture is a good idea, as well as trying the supplements. I also cut sugar out of my diet, joined a gym and lost two stone, and I thought that had helped, but they are creeping back again.

Glad to hear that the piercing isn't popular! I was willing to give it a try, but wasn't keen on the idea!

Another frequent migraine sufferer here. I've tried most things but find them unsuccessful. Has your gp talked about the possibility of Botox? I find it's one of the few things that helped me but it's a struggle to get it as it's an expensive treatment. Also a glimmer of hope - I found my migraines stopped in pregnancy and for four months afterwards both times.

Yeah I asked my GP about the piercing (also not keen on the idea) and they said absolutely no evidence for it, other than purely anecdotal.

Don't be too disheartened about the topiramate as there may be other safer things they will try you on. I'd be interested to see what they suggest for you OP as DP and I have discussed starting to try for a baby next year and I am already having reservations about coming off the topiramate! I would make an appointment with the GP and see what they suggest, fingers crossed for you

I have taken topiramate for years and it definitely helps control the migraines. When I wanted to conceive I had to come off it though and leave 6 months before we started trying.

My neurologist (one of the best) told me that pregnancy cures a large number of women from persistent migraines, unfortunately didn't happen for me.

My migraines definitely went away with my first pregnancy and isn't return till about 5 years after my second.

Apparently most migraneurs are deficient in magnesium and it drops even lower during an attack.

Oh I've never heard of Botox as a solution before?! Perhaps I'll mention it at my next appointment.

Sounds like topiramate is a no for me then, sounds a bit too risky with the possibility of me conceiving.

Good to hear that pregnancy can help...although that depends on me actually getting pregnant in the first place! For some reason, my body doesn't seem to be keen on the idea

I will also look into magnesium supplements- thanks

The Botox can be expensive if your the NHS nor private insurer won't cover - you need a lot more injections than with cosmetic (is what I've been told).

I take magnesium glycinate. Even if it's placebo, it has worked to an extent for me. I think I get them as often, but turned way down. I used to get pretty sick, pretty fast. Very quickly my ability to make the decision to take a triptan was gone. And then the panic, the nausea, the intense pain, the postdrome.

For me, magnesium and coenzyme q10 have turned it down so it's manageable.

Good luck with it - it's a really hard condition.

What are the side effects or long term effects of Botox?

I would like to consider it but not if it means I won't be able to frown!

It's academic as you won't be taking it, but I'm on topiramate twice daily - a small dose (25mg each time). It does seem to have reduced my migraines, which drag on for days and days and seem virtually impossible to get rid of once they descend.

I can't take a higher dose as the side-effects are terrible - depression, mainly.

Do try the magnesium supplements. Magnesium malate (Biocare is the brand I take) was recommended to me by a migraine specialist. You can also get magnesium spray from Holland & Barrett, which is good too.

I have had migraines for years. The only thing I have found that works is taking triptans every day as a preventative. I take Naramig every night and an extra during the day if a migraine starts. I'm prescribed 56 at a time. Not a usual way of taking triptans but it has reduced my migraines significantly.

ScottishG How did you get them to prescribe you 56 a time?

They won't give me any more than 12 triptans a month and they frequently tell me that's too many.

Another frequent migraine sufferer here. I had an MRI scan etc to rule out other causes and the neurologist prescribed me a couple of medications. But before trying them I decided to cut out gluten as he mentioned that helps some people... And lo and behold I've only had one migraine in six months as opposed to three per week! It's completely changed my life and I also have a flat tummy rather than the six month pregnant bump that I always had before!

I have the piercing
I know 4 other people who've had it. One it hasn't made any difference at all. 3 say they have not had a migraine since
In 18 months I've had the aura about 4 times. I drank water and took paracetamol and it resolved
Previously I was having 3 day migraines and using maxalt melt which made me feel very strange and gave me hangover like symptoms
It has changed my life
As there are no side effects I don't know why any migraine sufferer would not try it

I was recommended to take the triptans daily by a neurologist. My gp is brilliant and prescribes them. 56 tablets lasts me about 7 weeks. I do worry about potential long term effects as this is not the usual way to take triptans.

I was recommended to take the triptans daily by a neurologist. My gp is brilliant and prescribes them. 56 tablets lasts me about 7 weeks. I do worry about potential long term effects as this is not the usual way to take triptans.

I have a neurologist too but he hasn't mentioned this. I'll bring it up at our next appointment.

My triptans (Rizatriptan) are having some sort of supply issue and my medication is delayed

I take Topiramate 100mg daily. I actually did conceive DD on it (& got off it pretty damned quickly), we were lucky she's not got any problems. Definitely recommend trying it if you've not found an acceptable medication once you've finished having children. I won't lie, the side effects aren't nice, but the improvement to my quality of life is enormous. I get daily severe hemiplegic migraines if I'm not medicated; when I'm on it I get a bad attack perhaps a couple of times a year. I take high dose vitamin B complex, & magnesium as well. I also take selenium & zinc in an effort to counteract the side effects of the Topiramate (irreversible gradual hair loss - it doesn't happen to everyone but apparently it's fairly common).

I also avoid a load of trigger foods.

Recommend you check out the Migraine Action website for tips on managing your symptoms.

I take dosulepin (similar to amitriptiline) plus a tiny dose of propranolol and it works for me.

I was told that taking triptans more than 15/30 days a month puts you at risk for medication-induced bounce back migraines which are worse and more difficult to treat.

Yes, same lizzieoak. Hence why they nag about giving me my 12 each month.

i take topiramate 200mg per day, then have botox 12 weekly.
I have chronic migrane & cluster headache - 26 migranes/headaches last month.
I take sumitriptan by injection - but am limited to 12 per month to avoid being tripped into medication induced headache.

for the PP who asked - the botox is 31 injections over the face, head and neck. not too painful, but for about 10 weeks I cannot frown...

I've suffered from headaches/migraines for most of my adult life, I'm 44 now. It's debilitating isn't it? On the outside, while we may look ok, on the inside we are screaming.

I've been on amitriptyline for about 9 years, started off on 10mg, worked my up to 150mg a night. Currently reducing, down to 80mg, simply because they are not working anymore! Same with Topiramate- I'm on 200mg a day, but not reducing yet, don't want to until I've come off Amitriptyline.

I've also had two rounds of Botox. 31 injections in the head, neck, forehead & temples. For me it was awful! I found it didn't help at all, my eyebrows drooped considerably, so much so I couldn't apply mascara or eyeliner!

I was also put on estrogen patches then the mini pill, to see if they could level out my hormones around the time of my period, but the mini pill didn't really help either & the patches had other complications whist in the mini pill.

I drink as much water as I can. I take naratriptan when headache/migraine is very bad, otherwise it's Anadin extra or naproxen. If I'm lucky I can go about a week with no headache. I use the Deep Heat muscle rescue neck & shoulder cream which sometimes relieves a mild headache.

I really envy people who say 'oh I had a migraine once.' They have no idea do they!

I had to stop Amitriptyline abruptly when I fell pregnant with my son 8 yrs ago. My headaches went through the roof for the first 13 weeks, I could only take minimum amount of co-codamol. Strangely though, the last 6,7 weeks of my pregnancy I didn't have once single headache, it was great! Then about a week after he was born, the meanest baddest one ever, so went back on Amitriptyline.