Log in
Fibromyalgia Action UK
43,662 members55,613 posts

Anyone suffer with migraines alongside their fibro?

I do - I get at least 7 or 8 a month - just been given topiramate as a prophylaxis for them as amitrip and gabapen don't work - anyone else tried these?

23 Replies
oldestnewest

Hi ChristineEls,

I too suffer migraines, migraine specialist who looked at my list of prescriptions, saw that co-it might be ok for other parts of the body but not for severe headaches or migraines. Maybe you should consider a change of medication, You'll never know till you've tried :)

Reply

Please let me know how you get on, Take care :)

Reply

my codiene headaches where hell to bare so i had to go off co codamol in the end [30/500] cant touch them at all now with out getting the codiene headache. dylafenic would take the edge off them as long as i hadnt taken the codiene, but only the tip of the iceberg headache not the entire headache. its your bodies way of making you take more.

Reply

I suffer from mega headaches, they seem to be one of my major symptoms although I have many. My doc has given me gabapentin to try and after a month they have made no difference to me. lol x

Reply

I have MEGA ones that are fetting worse. I can cry myself to sleep and nothing gets rid of my pain. Sending you my sympathy xx

Reply

I suffer from these quite often my doctor prescribed imigran and they make a big difference. Far better getting from doctor as they cost £8 for 2 from boots!!! x

Reply

I suffer migraine and they have been getting worse the past 2 years. Maybe since I have been unable to leave the house as much. I have been on Zomig which is great and generally fast in responding. I was changed to Imigran a few months back but had to revert to the more expensive Zomig. Ask for a migraine specific medication. Your Pharmacist can recommend a few. Best wishes. Fi

Reply

Hope it all carries on well for you. I find I get more pains etc round the neck if i am housebound,and have led to migraines in the past. I think in my case it is because when I sit around, I don't sit right and the circulation gets blocked to my head and neck.

Try moving around a bit if you can, and maybe gentle neck exercises, if allowed, may help. A medic once told me cold on the head and heat on the back of the neck helps too, if the migraine won't shift.

Reply

Thanks Glenys. Neck exercise is out but will try the heat/cold treatment straight away. :0)

Reply

Lynn - thanks for the reply - this is what I was hoping to hear but I have to tell you that I had a fight on my hands and had to argue with my GP (literally) to get this prescribed for me. I am not the sort of person who will take anything and everything that I am given, I do my homework and if I don't like the sound of the side effects or the fact that it is the cheapest option, then I won't accept it! Its me that in pain and suffering and thats already enough to contend with and I won't be a guinea pig!

Off the soap box now...... I had been doing some research in preventative meds becuase I 'get used' to meds quite quickly and I also get all side effects going with whatever med I take (hopeless :-( ). I have tried all the normal cheap options and I even had to specifically request Relpax when Zomig nasal stopped working (Relpax were superb when I fist started taking them but boy do they make me ill now!!). I had asked about Topirimate before but my GP was not actually aware of it, but my last attack knocked me off my feet for a week and I was soooo ill the pain and sickness was off the scale and I just can't stand it anymore.

Normal dosage is 25mg up to 50mg over a 4 week period but my GP has only prescibed 15mg to start upto 30mg over 2 weeks and she didn't go through any of the side effects/issues of the drug etc., so its a good job I have done my homework.

I can live with the weight loss (I need it after hysterectomy and HRT) though at this dosage I doubt there will be much to worry about (as long as you don't put it back on later! lol), but I wanted to make sure I can still take Zomig nasal if I do get another attack whilst taking these - I will ask the chemist anyway when I collect them.

Reply

Lynn - thanks again. Just collected my prescription and it is topirimate - is it ok to start on this and then change to the real brand next prescription? And what 'funny' behaviour do you mean...??

Reply

Thanks.. I think :-) Generic company name is Arrow generics - well, I am a little unsure about it, but I intend to start taking it at bedtime this evening so wish me luck!

Reply

yes ive had a really bad headache for over a week and have been given anti sickness drugs :(

Reply

Yep I get migraines but they are nowhere near as frequent as they were when I was working. My doc prescribes Migraleve which are pretty good but I do have to sleep off a migraine!

Reply

Just like you nuttybabez , I have just came out of one, , had it since Mon . I have to go to bed & stay in the dark. Nearly every 2 weeks i have one & was prescribed Imigran. They certainly work for me.

I am also on MST (morphine slow release) & Oramorph (liquid morphine) topup

Gabapentin - muscle relaxent.

Citalopram - anti-depresant

Omeprazole - gastro resistant

Clonidine - hot flushes.

Heard the saying ......SHAKE ME I RATTLE!!!!! ?

Reply

I'm the same - I have to sleep my migraines off if I don't get to them in time with painkillers. I get a lot less now I have been on Amitripyline, but after 9 years of taking them I keep trying to drop them, and end up like a weepy zombie instead through lack of <whatever it is it that it does>! I always have the fear that the migraines will be back worse as before too.

They're not nice things, and it always annoys me when people who haven't ever had a migraine call them "nothing but a bad headache". My manager would always put "Off with a bad headache" on my sickness sheet. I told him on occasions to change it, as migraine is NOT a headache (I know you will understand....) :-)

XG

Reply

i was on amitripyline for years and never remembered that i used to get terrible migraines. then i was changed to dosulepin as it has fewer side effects like weight gain etc. it was brill. i lost weight but i did have to come off amitrypyline for a week before going on them. i didnt sleep for an entire week. i am quite happy with the dosulepin HOWEVER, and its a biggy. i get migraines at the drop of a hat. any tiny stessy thing and as soon as its over i either wake up having had the ocula stuff while asleep and i am in major pain or get the ocula stuff in time to take my imigran50. dont think i could manage without them now. its migraine hell at least three times a month and it takes days to recover. so stick with the amitriptlyn [note spelt differently each time.. clueless] as it really does do what it says on the tin.

and as for mad bosses once mine asked me to continue on the TILL for another hour until she could arrange cover. i pointed out i couldnt actually see the total i was suposed to be asking the customer for... the customer then gave her an enormous lecture on what a migraine was and how i needed to take this time to get home and get meds and get under a duvet before the storm of pain hit me. couldnt have said it better myself but at the time i was too disoriantated to have done so. she was a star. she even made me get up and leave the till.... my boss could say nothing.

Reply

Have anyone of you with recurrent migraine ever been checked out for myofascial pain issues by someone properly competent in this area? My recurrent migraines were completely dealt with through treating my myofascial pain.

Reply

Hi - yes - I do have MFP and also TMJ - this is currently being treated by physio who also found out that all of the discs in my neck were out! I also have chronic back pain which is undergoing investigation with MRI - just waiting for the results. Sometimes feel like a hypochondriac, but you know where I am coming from - but I do get mega fed up with everything being put down to FM rather than it being dealt with seriously - its not on when its a battle with your GP to be referred or even taken seriously - I know my FM and I know what is and what isn't my FM!

Reply

I understand. I sometime wonder if I will break a leg and the doctor would blame it on Fibro! Just had some bloods done referred by a GP who is actually taking one of my other health concerns seriously and some of the test have come back positive, showing something else is actally wrong other than fibro. However I see a different doc next week to discuss the results and am half expecting him to turn it round to the fibro again...so i will appeal if so!

I can imagine myofacial pain being at the root of migraine, and I am sure it is that way with me, if I am having a flareup, all the mucles aroung my ears feel like they are burning (usually at night), and have heard that is related to TMJ?

Reply

hi i do i get given 6 naramig tablets a month and they never last, i dont get warnings i can wake up and as soon as i move my eyes i know, it hurts to open them, when my amitriptyline was increased, i suffered 5 days of them. xxx

Reply

HI i get about 3 a month,nothing seems to help except trying and trying is the word to get sleep that and not move once i have gotcomfortable in bed then not move

Reply

I take one Pizotifen 1.5mg for migraine control ask your doctors these have been a life saver for me, was in hospital with the migraine, and they advised my doctor to put me on these. Brilliant, not one migraine since ( 3 years and counting)

Reply