'Beyond Hope?' Anyone got advice or help for migraine prevention?

Has anyone been told by their GP or consultant that they've tried everything and they don't know what else to do? I am feeling hopeless.

34yrs, mum of 3yr old, working, lots commitments/interests, dieting, enjoy cycling/swimming/walking when well.

Been told I'm in worst 5% migraine sufferers in the UK (although no idea if that's true!) as was put forward for a clinical trial, but that didn't help, and now I have to wait 3 months to see my consultant as I fell off their books! I really want a preventative rather than just a treatment once an attack has set in as it can last up to a week!

Over the years I have tried:

Hormone treatment/contraceptives (various)

Antidepressants (amitriptyline)

Paramax

Mefanamic Acid

Coedine

Epilepsy drugs (topirimate)

Reflexology, massage, Acupuncture

Botox (medically by neurology consultant)

Vagal nerve stimulation

Can't have beta blockers as have asthma

Triptans are only thing to help with attacks

Hoping someone has some ideas for me to share with my GP (consultant appt isn't til end April)

Thanks in advance.

43 Replies

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  • Search Migraine Sufferers Who Want to be cured Angela Stanton & join

  • The only thing that has ever worked for me is Pregabablin 150mg BD . It is an epilepsy drug but it was like a miracle . Triptans too but was taking too many .Hope that helps .

  • Thank you. I'll look into that!

  • It's so tough isn't it. Ive also been through a lot of the above. Treatments I've tried that aren't on your list are: Gabapentin, Candesartan, and Occipital Nerve Block. I've ended up going to a private neurologist even though I can barely afford it because the GP ran out of ideas and the NHS neuro just didn't have the time to spend during consultations to really get into my migraines. The private neuro is also far more specialist in migraine - I did loads of research to identify the best person possible.

    The only other thing that consistently helps me is detoxing from Triptans regularly - usually using Naproxen to help and having no Triptans for 6 weeks. It's tough at first but I find it reduces my migraines substantially. I always slip gradually back into having loads, but it's a good reset button.

  • Same. I don't solely recommend the GP as they clock watch and interested in giving tablets and not looking at root of problem. I had to wait ages for neurologist on NHS and he prescribed me tablets too so I felt that was a waste of time also. Losingit2017 do you perhaps take too many triptans? Should only take a max. of 8 a month. My consultant NMC said there were new treatments etc coming this year so I am interested to see what she says next month when I see her and will share with this forum.

  • Thank you.

  • Hi.

    Sorry to hear you're suffering. I suffer severe migraines also, so I fully sympathise.

    I was told last week at the migraine clinic I attend, that I have exhausted all the preventative meds. But as I am on Gabapentin for neuralgia, we have decided to increase the dose. If that doesn't help, then next is a GON (greater occipital nerve) injection.

    I suddenly developed auras 2 years ago and then had almost daily migraines for about 11 months. Partly due to rebound headaches. Now I have weekly migraines which can last between 1 day & all week. I am on Almatriptan for the migraines, I've found it very effective. The consultant told me:

    No more than 12 migraine tabs per month.

    No codeine based painkillers at all.

    In terms of preventative meds, I have tried:

    Pregabalin. Epilum. Candesartane. Amitriptyline. Pizotifen. Propranolol. Gabapentin. There's another, but I can't remember it.

    I hope this info helps. Wishing you all the best.

    Kind regards, Catherine.

  • Thanks for replying. Not had gabapentin but think that was on the 'last thing to try' letter that my GP mentioned when re-referring me. Is it a blood pressure drug? Any side effects or things you can say about it?

  • Hi.

    I was prescribed Gabapentin for neuralgia. I personally don't have many side effects with this, but I do have a low tolerance. It makes me 'foggy', 'zombiefied' and for me, causes dry mouth. But that's it.

    It's an anti convulsant medicine, often used for for nerve pain. Hope this helps.

    Catherine.

  • while i sympathise with you you are by no means a worst case

    my 18.5 yr old grandaughter received a hit on her head from an unsecured panel of wood 3.5 yrs ago ...she has suffered very severe post traumatic migraine ever since 24 hours a day 7 days a week with no let up

    every single med thrown at her causes horrendous side effects

    nothing stops the migraine

    even 5 days of IV DHE only caused even more nausea and pain

    she has to take 3 different anti sickness pils to semi control the constant nausea cannot be in anything other than a darkned quiet room

  • Thank you. I think it was the drug Rep who was doing the trial take on 'the worst' as I was referred due to them running out of options. Your poor granddaughter! Yes dark room, ice pack etc are the only option often!

  • its totally wrecked her life..nothing but nothing stops the pain and nausea

    and the bastards who failed to secure the panel are ignoring all solicitors letters and will have to be issued with court proceedings

  • Hello,

    I am sorry you are suffering so much - it's a long shot but have you had your thyroid and B12 checked? My migraines became a lot easier once I was correctly diagnosed with an under active thyroid and B12 deficient and as a result treated.

    Also - I too am asthmatic but am able to take beta-blockers. As long as you do not react to taking NSAI such as Ibuprofen or even Mefanemic Acid it is unlikely you will react to beta-blockers. I found that Beta-blockers were in fact one of the best ways of preventing my migraines so they could be worth a try. The doctor will start you on a low dose to start with to ensure you don't react in a negative way to them.

    I know it's scary trying new medication but you have topamax and you live with migraines so in my opinion you can deal with pretty much anything.

    Victoria X

  • Thank you. No I don't react to anti Inflamatories but my asthma is severe so they won't try it. I've had blood tests done but I'm never 100% sure what they're checking! Just been told today that I'm anemic. Not sure of links with b12 and thyroid. I have trouble loosing weight though and struggle with energy levels, as well as digestive and breathing issues. Oh the joys!!

  • It can, you can always ask for a print off of all your blood test results at reception. They will often say your B12 is fine as long as it falls within their range but it's well known that anything under 500 can result in neurological symptoms. There is a similar issue with diagnosing an under active Thyroid - many European countries will treat you if your TSH is above 3 however here in the UK you often have to be above 10.

    Get your print off and PM me if you want xx

  • Oh ok, thanks. How do I find out what they tested and what my scores are? I was sent for a blood test for asthma, and they said it was a general one. All they said was i'm mildly anaemic (below 12) but everything else was normal, but I didnt ask what 'everything else' meant!

  • At my doctors I am able to log in and look at all my test results and it tells me everything they have tested for. If you don't have this just as the receptionist to print of the results of your last two? blood tests.

    It will say on the print off what was tested, what the ranges were - (theses are shown in brackets) and the results.

  • I've asked for a blood test and been referred to check B12 and thyroid. I'll ask for details test results this time!

  • I too take b12 and B2, which I think is helping. Doctor had prescribed topiramte, and reading up on side effects put me off so I have done loads of research. Tried magnesium too, but that gave me a really bad headache, not migrain bad but close

  • I agree with Tor, I am an asthma sufferer however I have been getting the nerve bock injections monthly for the past 3 years. I have these in conjunction with botox and 200mg of Topiramate twice daily. I also have severe migraines, lasting as long as 7-10 days. Since finding the right treatment for me the migraines have lessened or are less frequent. I have been diagnosed with Occupital Neuralgia. I would honestly push to try the nerve block injections. They made a massive difference for me, the Topiramate alone did not do much. They seem to work well in conjuntion with eachother (at least in my case). I hope you find a resolution soon!

  • I think neurologists are worse than GP. GPs at least try to listen and recommend next step - neurologists are only there to count how many patients they have seen for that day - almost all of them are not migraine expert and in my opinion, it's waste of time for sufferers.

    Currently I am taking these two types of therapy below and frequency + intensity have reduced:

    1) Riboflavin (vitamin B2) 400mg daily : If GP does not write prescription, it can be obtained from Holland and Barrett, they have 100mg tablets, so take 4 of them at a time. But a cheaper option would be to buy from Amazon (Bio-Tech) . Please remember, the daily dose has to be 400mg, no less. Some people advise to take random muti-vitamin and minerals but there is no evidence that it would work, however for Riboflavin - there was a clinical research in 1998 - healthunlocked.com/api/redi...

    2) Homeopathic remedy : Please consult an experienced homeopath - I'm currently taking homeopathy remedy. It does not work for all but no harm trying.

    Also, please consider some jogging or fast walking (20m - 30m) every day. Avoid red meat altogether and try not to consume alcohol. I have found late night activity such as sitting in front of computers etc can make headache worse, although this may not apply to you.

    ----------------

    If above does not help - you may consider to have a surgery (removing corrugator muscle) - it is about £3k in London. Initial test is about £300 and if you are found suitable for surgery (i.e. if botox works) - then you pay the rest of the amont.

    You can read it here: migrainesurgery.co.uk/uk/en...

    news.bbc.co.uk/1/hi/health/...

  • I'd forgotten (I've tried a lot!) I had B supplements, calcuim and magnesium (tablets and spray), Chinese medicine, herbalist, and homeopathy! And chiropractor (which was great). The former things didn't help. 😕

  • It sounds quite depressing - but taking B supplement is not going to help migraine unless in that supplement, you had 400mg of B2 (Riboflavin). Usual (OTC) B supplements only contain 2 to 5 mg, even if you manage to take 100mg per day, it's still not supposed to make any difference. Please try exact 400mg each day for 60 days and only after that you can judge whether it is beneficial or not - it may not work for you in the end, but the dose has to be correct. Pharmacists do not sell 400mg B2, I have checked, none of them sell in the UK. Even if you say, you want to order, they would say no, "you will need prescription". So I bought from Amazon in the end.

  • Thanks. I can't remember the supplement. Not sure if it was B2 or B12. I had it from a specialist supplier but it was several years ago. I'll look into it. Thanks so much!

  • Have you tried pizotifen? It has side effects - sleepiness and appetite increase but worked for me for a while. I stared on a tiny dose at a weekend so work wouldnt be affected, taken before bed, and gradually increased it.

  • I think I did, a long time ago. I have had migraine most weeks since I was 11 years old (now 34!) I think I had that in my late teens/early 20s and definitely made me gain weight, but didn't help. I had a really poorly time with it at university.

  • I also agre you should see a neurologist. I used to go to the London Migraine Clinic. They suggested to my gp that I be taught to inject myself with stemitil once an attack is under way. I can't tell you what a relief it was to be able to do this for myself, instead of relying on unwilling doctor to visit me at home when I had been vomiting and retching for hours or days. Stemitil would stop the nausea and helpe sleep and recover.

  • Finally I send huge sympathy ...don't give up, and keep fighting for the proper help you deserve!

  • I take a mineral multi-vitamin plus extra B2-400 Riboflavin and D3-5 Vitamin D3 from Bio-Tech, and I have not had a migraine for over a year. I get them from Amazon or Greenvits

  • Lots of migraine sufferers benefit from vitamin B12 injections as in my case. I had severe migraines and tried so many medicines and alternative treatments like yourself and it wasnt untill I was again referred to see a Neurologist ( different one this time then before), that it was found that I had a low B12 bloodtest result, I was B12 deficient. The treatment started , ( explained very well on the PAS community site on Healthunlocked. I now get regular monthly injections to keep me right. I still get the odd migraine but never so severe as they were in the past and they also dont last that long either. ( mine were 3 day affairs in bed, with bucket next to it, in a dark room.)

    So Loosingit2007, don't despair go and ask for a blood test to check your B12 level and your folate level. Vitamine D level is also helpful. Have the results printed out and come back on Healthunlocked and read the information on what to do next.

  • Thanks so much

  • Don't know if this helps, but have you tried the glasses, you need anti glare, anti uva, anti uvb,and an orange tint. Sunlight is really bad for me and strip lighting, so modern light bulbs are my worst enemy.

  • You have my sympathies - another here saying definitely try good quality B2 (Riboflavin) and Magnesium and CoQ10 - continue taking it, don't give up. Alka Seltzer (Aspirin) x 2 at onset.

  • Hi, I'm trying Cranio-Sacral Therapy at the moment. It has reduced the frequency and severity of attacks. The down side is that it is weekly visits and costs each time.

    It is very gentle touching to rebalance the body and remove any restrictions, blockages or dysfunctions. It is not cranial osteopathy.

    For me, it's better than putting more chemicals into my body.

    I wish you luck in finding a solution.

  • What did you try in combination? For me, it's been birth control pills combined with topamax (sprinkle caps - the pills did nothing) and a daily muscle relaxer. Also I simply can't do the things I used to do. I can't drink wine, exercise intensely, stay up late, go to noisy places, spend the day in the sun, etc.

  • Hi I have recently been hospitalised 3 times in 3 weeks and I have finally found a neurologist that wants to help, since taking this medication I have been heAdache free for 10days which is amazing for me

    Topiramate 50mg 2x a day

    Indometacin 25mg 3x a day

    Sertraline 150mg1x a day

    Ranitidine 15ng 1xa day

    I am waiting to go for another MRI scan at St George's London where I had my surgery as the Neuro surgeon thinks I am having mini strokes when I have a migraine

    The Indometacin is a Non Steroid Anti Inflammatory which helps to calm the blood vessels but is you take this you are not allowed to take Ibuprofen as they clash in what they do in the body in told but since taking them I have not had an attack which is amazing for me. I hope this helps 😊

  • Thank you for sgaring. Sounds awful for you but so glad you're getting a good combination of help now. I'll look into those drug. Thank you

  • The response has been phenomenal and so encouraging. Thank you everyone who has shared. I've made a note of all the treatments to discuss with my consultant at my appointment. I finally feel there is a hope! That's a dangerous feeling as it always has been built up and then dashed but then I think i have unrealistic expectations of complete healing rather than manageable life. I'm having the best run of migraine free time at the moment as I'm on a high dose of oral steroid for asthma. I reduce tomorrow and my past experience says that may trigger a migraine. Hopefully by cutting down slowly I can reduce that risk (I'm on a month of the steroids as I reduce). Anyone else noticed a connection between steroids and migraine? If they didn't have so many long term side effects I'd stay on them!

  • I'm a 46 year old lady who has had migrane for the past 3 decades, and more , and like you have been told, now by my neurologist that there is nothing else they can or will do for me. I too , like you have over the years tried EVERYTHING.. even had my ovaries and phelopian tubes removed to save me from the torment of menstral migrane as well. There's not a drug I've haven't been given from this country of abroad and I've been given Botox (which damn near killed me) plus every device on the migrane market. I have now taken the step to completely change my life stay and diet. Can I suggest you buy THE MIGRANE MIRICLE, by Josh Turkknet. He is a neurologist and dietitian. Amazingly he has found links in the brain between migrane and Celiac desiase, in a very long story short he will tell you that it's all linked to sticking to a diet of grain and gluten free food. Reaching ketones in you body , so only having a diet the same as we did all those millions of years ago , when we never had grain rich foods. I have been on a diet now of , meat , nuts and seeds, berries, dairy ( the high fat varieties …! ) vegetables, low starchy) all salad veg is fine etc... My migrane shave halved, I'm not saying disappeared, but for me right now it's a no brainier. I would not go back, a Ketone diet has actually given me what no drug as yet has ever. Mr Turknett say the one thing the body can survive without is carbohydrates, and as yet I have and I do, and by a country mile my migrane have completely changed.

    Just by the book , give it a go see if it works for you, I'd not go back, it may not last who knows but for sure it's the best way I've found of fighting the beast so far in over 3 decades of torture. Hope I've helped in sum small way. :)

  • Thank you. Interestingly I tried 'banting' (South African diet on same principles) which is similar in the past and it helped me loose weight. I've just bought Tom Kerridges Dopemine Diet which is a recipe book based exactly on that (on offer on Amazon) and looks great. Looking at this for weight loss, digestive issues (GERD, hiatus hernia and anemia), asthma and now if it would help migraine too then it'd be amazing!

  • Thanks for the heads up loosingit2017 on those other books, I may to have a look at those.

    I too suffer quite badly with asthma so may be diet could pay a part in controlling that as well, I'm hoping that I may be able to come off topirimate, I only take 25mg morning and evening, been told by neurologist that it's not worth taking it at such a low dose but I have over the years found it intolerable to take drugs that have been prescribed to me, and or up the dose of what I'm all ready on. However thankfully the ketone diet has drastically reduced the amount of triptans I have had to take.

    I really hope you can plough on with not giving up, giving up ,.! in any way, it is tough and really hopeless when your told that you've been, for want of a better word , given up on by the so called experts we so want to help us.

    I know I felt pretty lost at the time🙂

  • Thank you. This forum/thread has encouraged me so much! I am. It alone, and I have some news ideas! X

  • Me too, I sureley don't feel as isolated as I did. Guess we can all suffer together …! 😨

    I'm definitely going to look at all the other diet suggestions so , thank you, I'm gonna try and keep following this site , although I'm not that good at it…!!😄X

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