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    National Migraine Centre
    6,141 members • 1,729 posts

    Fed Up!

    Since I was 14, I have suffered with migraine. They used to be once in a while, at most twice a year, but in the last ten years or so, monthly. I no longer have a menstrual cycle as I had a hysterectomy at 33, so it isn't related to that. The pain is overwhelming, sometimes up to 48 hours when I can do nothing except lay down, try to sleep and take painkillers.

    I have had Tryptilines over the years, which caused awful side effects to the rest of my body, so I just gave up. My GP doesn't seem too bothered, the only person who was interested was my neurosurgeon; I have spinal problems and several discs out in my neck, which is what I think are causing the migraines now. But he won't operate due to the proximity to the brain!

    Cortisone injections have been mentioned, but I don't fancy needles being shoved into this sensitive area thank you!

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    13 Replies
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    Hi,

    Maybe find out about botox instead of cortisone. This has worked quite well for lots of people and is a know migraine treatement. Have you tried Zomig? I have had migraine all my life and I am now 54. I find Zomig works better than the other triptans.

    Hope this helps,

    Letitia

    Reply

    Hi,

    I did wonder about that, I may have to mention it to my GP, although it's my neurologist who metioned the Coritsone for the disc problems in my neck, not to relieve migraine :0( Zomig was one which gave me horrendously sensitive skin, even lukewarm water felt like it was scalding me!

    Thank you

    Jayne

    Reply

    I am now 73 and have suffered from migraines since I was nine years old so to some extent I know how you feel. I get at least 20 migraines a month that usually wake me up in the night but lucky I get the impression that yours are much more severe than mine. Sumatriptan works for me with no side effects at all but I think I take far too many - even though my doctor prescribes them.

    Have you thought about chiropractic treatment or acupuncture? I'm not sure where to get the Botox injections that are being considered by NICE - injections all around the head. My local Healthcare Trust trust is unlikely to approve them, I'm told, because the research into their effectiveness is not convincing enough. I had Botox injections above the eybrows at the London Migraine Surgery Clinic Centre (www.migrainesurgery.co.uk) but they didn't help.

    I'd be hesitant about the cortisone injections, too. I had one in my elbow to ease tendonitis. The injection was very painful and the effect lasted for only about three months.

    Reply

    I wish somebody, somewhere, would find an all round cure don't you? I know everyone's experiences with it are different and some are merely saying a bad headache is a migraine (they make me SO angry!), but there are common factors. When I get one I feel like my head is held in a vice and my eyeballs are being shoved out of my head. The only thing that eases it is to put pressure on my head by pushing down on it onto something firm eg my sofa arm! But the slightest movement causes that throbbing, you know yourself I'm sure? I'm sometimes sick with them and get vertigo quite often, so really best off lying down. The Triptans just haven't done anything except cause other side effects.

    I had thought about it, but again, it all boils down to money :0/ My surgery won't refer me for the treatments and I can't afford to go privately, so it's a catch 22 situation. I bet the restrictions on spending now that this government has handed the purse stings over to the GP's makes it so that things like the Botox injections are a no-no for most!

    I had the Cortisone injections in the base of my spine...never, EVER again will I go through that. The mere thought of them in my neck sets my teeth on edge, painful things they are and for me only worked two weeks!

    Reply

    Hello, I'm so sorry you're suffering so much. Have you ever had an appointment at the National Migraine Centre? That's the first thing I would suggest you do - you don't need a GP referral and they do ask for a donation but nothing like private - and if you can't afford much they don't ask for much at all! My neck is my biggest migraine trigger - I have relatively mild neck damage compared to yours I think - torn discs, nerve damage, mild spine fracture from 13 years ago - and actually last year had a steroid injection in my neck at c4/7 - done under x-ray which I think is the same thing? To my great surprise it didn't trigger a migraine - as even someone just pushing their thumb into my neck can send it into spasm and migraine land...and actually helped for a bit - as did Greater Occipital Nerve Blocks - and finding the RIGHT physiotherapist. Finding the right one is key...its more orthopaedic rehab...I spent YEARS doing the rounds of chiro/osteo's other physio's crunching my neck and making it worse - so finding the right person is key. And yes, I know neck pain is also a symptom of migraine - but for some, like me, my mother and sister, is it also a trigger. So I'm having treatment on my neck as I think having 'dorsal root ganglion block' injections is far less invasive than more surgery? But obviously I'm not a Dr and really don't know what I'm talking about....but I do know that the neck can greatly contribute to vertigo as well - as again strengthening and slowly treating my neck helped my vertigo more than anything. Have you tried a TENS unit? You can put one patch on your neck & one on your shoulder, wherever pain is - really comforting, along with heat patches etc. But first I'd say go and talk to one of the lovely Dr's at the Nat Migraine Centre. Right I'll stop blabbering away now!

    Reply

    Hi Victoria,

    Thank you, that is so detailed! I live in West Yorkshire and am on disabled benefits, so sadly can't afford to travel to London, as much as I would love to get the help they offer :0(

    My neck is definitely a trigger, I know that if I turn to my left continually that it triggers a migraine, or look upwards for any length of time. The steroid injections you had, sound like what the neurosurgeon suggested to me. I'm still not sure...although it would help if the appointments went to the right address! I reported to the hospital that we had moved and yet any referrals are going to my old address and then they report to my doctor that I don't turn up for them! I've had physio on my lower back, many years ago, which only worsened the problem so I have no faith in them at all. But like you say, the right one is worth their weight in gold! I do have a TENS unit for my back, tried it on my neck once and it had a weird effect on my arm...ie it had a life of its own and kept lifting into the air! :0) My wheat bag is my best friend!

    If I win the lottery, I'll be off to London believe me!

    Thanks again

    Reply

    Hi, I do sympathise with you. Bythe way do you remember where you got your wheat bag from?

    I recently got a lavender bag,£2.99, and I really like it except for 2 things. One- it doesnt smell very nice now even though its only had a few uses and two-it wont stay hot for very long.

    Should I have found a more expensive one?

    Reply

    Hi, yes I got it in a local beauty shop and it was only £2.99 too. I don't think wheatbags do smell very nice, even with the lavender scent, but I don't care so long as it takes away the neck/back pain when I use it ;0) Mine stays hot for about an hour I'd say, about as long as a hot water bottle really. I don't think paying any more would get you any more heat or a better smell, it's still going to be wheat and still have the wheat scent ;0)

    I once heard that there are bags with small stones in which retain heat better, but I don't know where you'd get one. How about Amazon or eBay?

    Reply

    Hi,

    My TENS used to do that to - but I turned it down a lot and fiddled with the placement of it on my neck and shoulder and found it to be a really great pain reliever/distracter - used in conjunction with heat/wheat bags as well - so maybe worth another go?? Hope you've had a good weekend!

    Reply

    Hi,

    Yes I'll give it another go there then. You too, I've rather stupidly rearranged m living room furniture this morning :0/ So I'll no doubt suffer tomorrow!

    Reply

    Hi Jayne,

    Sounds like we're quite similar. Mine also started at 14, although they only lasted for a year or so and then I had no problems for about 20 years. When they returned, they were definitely linked to my menstrual cycle, but I have also had a hysterectomy now, so that rules that out. I am on HRT, so wonder if that might have something to do with it. Have you seen the Hysterectomy Associations's forum and website? They have some great info and talk about different types of HRT, so if that's relevant to you, it might be worth exploring. Also, I am interested to see that some of you have found heat pads helpful - I've been using a cold one and that helps. There is something called a Chillow (again referred to on the Hysterectomy Assoc forum or you could just Google it) which is a pillow designed to cool you down (helps with menopausal hot flushes). I haven't tried this but it might help.

    At the moment I am getting a 3 day migraine every week at least and it's driving me insane. I have stopped taking painkillers as they make me feel so awful and I don't want to od. Triptans don't work for me either. Acupuncture helped a bit, although not long term.

    Just one other thing that I thought of - I think there is a national bus service that charges £1 each way (The Big Bus co or something like that) to London from all over the country. I could be wrong but it might be worth investigating, although I appreciate there will be fares across London and disability benefits aren't exactly generous, are they?!

    A cure would be good!

    Reply

    Hi and thank you for replying! Yes, it does seem like we have a lot in common! Thanks I'll have a look at the Hysterectomy Association's website (I didn;t even know there was one!), I did wonder about HRT being a factor. Having been on it now for over 19 years, with just the odd hot flush when I get flustered I often wonder if it's worth taking it for much longer. I've heard of the Chillow and when I have a migraine it's ice that helps; the heat helps my neck and shoulder pain from the slipped discs.

    I've heard of these £1 fares on coaches, not even thought about them for a trip to London because of my spinal problems. I can't sit for hours without being in loads of pain. There must be a way around it...It just annoys me that everything important is in London! :0/

    No disability benefits aren't generous, but without them I'd be in a heck of a mess ;0)

    Yes definitely!

    Reply

    I'm sorry for not responding to this sooner. I've been working on getting a website together for chronic migraine sufferers in between the migraine pain and fog. I hope to have all your questions answered and more.

    for those that would like, i have a support group for anyone that would like to join me on facebook ...anything that is chronic migraine is likely to be related to me and my resources

    chronicmigraineawareness.com

    Reply

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