National Migraine Centre
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Help required please guys 🤔

Hiya I'm a chronic migraine sufferers, since a teen , I've literally tried everything under the sun , I'm having a flair up and I'm constantly getting pins and needles in my feet, hands and lips , not a fan of sumitriptan due to side effects and fed up totally atm , feel like I'm constantly pumping myself full of drugs with no let up or as you all know , not much life either, feel pretty down atm too, any ideas? Willing to try anything really Xx

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Did you try Botox or trigger-point inyección ??

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Yes I've had several Botox injections and had a nerve block before that too x

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B2, magnesium, feverfew?

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So sorry for you have you tried naratriten it's side affects are less and also found Injects GON really helped

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No I haven't tried this will look it up thanks what's gon?

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If you haven’t contacted the National migraine center already this is a good first step. There are lots of other Triptans to try too, and other abortives don’t give up. Also lots of preventatives too, I have found Botox to be useful alongside 400mg riboflavin, feverfew and eating loads of vegetables. Cefaly, osteopath were useful too. I am sorry your having a hard time and hope it gets better soon.

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Thanks for your reply I'm awaiting more Botox treatment, long waiting list unfortunately, I will try the riboflavin too thank you x

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You sound like me. How far are you along in your journey of "migrainous status"? Do you have a neurologist that is actually committed to your care, or do they make you feel irrelevant when you walk in the door? I've had migraines my entire life and I've had them bad enough to go to ER before, but when this unholy monster hit last year and absolutely darn near took me down with it, I knew it was no simple migraine. I have learned in the past year there really isn't a whole lot anyone CAN do for them, quite frankly. It's like you've never been seen for a migraine before, which can be frustrating but it makes sense. I had full physical, blood drawn, MRI'S both with and without the contrast, full migraine trigger journal which ended up being funny in a gallows humor way. How can you see a trigger if the damned tho g refused to leave?

MRI'S came back showing lots of white matter damage on both sides of the brain, however my right side is worst. I was immediately started off on a regimen of anti seizure meds, doxepin to try to help me sleep, topamax (I ended up all messed up on that crap mentally,so off that one then on to verapamil overnight. As for abortives? Good grief the list is long. Complicated sometimes too. When Relpax very first came out several years ago, it was a miracle. This stuck migraine? Nothing. I tried Caffergot, Imitrex, so many different pill formulations, Then injections because not only was I in unbearable pain with aura cycling g through, I had also developed nausea. Overarching nausea to EVERYTHING.They started bringing me in to do migraine infusion treatments twice a week. Stuck in a private infusion room, door shut, blinds drawn, IV in.4 to 6 hours a time. I could sleep on some of those thankfully.

After a few months of that, my insurance finally quit screwing around and decided I needed to get Botox injections to try and get myself and my family back in order. It actually cumulatively started to work enough I started having partially clear days. I was still averaging 5-6 days a week useless still. Sometimes I would still have to go get shots at the neurologist office, run into the ER on occasion, get 56 Botox injections every 12 weeks (and no, it is NOT the same strength shot or needle used to make wrinkles vanish). I was also recetted to the Aimovig program (1shot self injected after your first trial of 2 are delivered at the neurologist). I can't say it 100% relief from this monster that has taken up residence in my brain,blinding me with pain, numbing my personality to near zero, taken friends, driven wedges between myself and my family. No, I am sad to report I am still struggling mightily with the

monster migrainous status that decided this very week to move into my head to this very day has not ever really budged. I wish I could tell you there is a magic pill, a magic shot, an herb or combination of vitamins that will help you

I can say that I do hope and pray that you WILL be one of the lucky. You WILL find what you need to regain your life. I wish you all the best love and luck in the future, and may your miracle come swiftly and stay

If it doesn't, just know you are not alone out here, struggling every day to try to be normal when all you want to do is run away and hide. When the pain is so intense you wonder why you're still here. When people shun you and reject you, accusing you of being lazy, or fami g the pain .

I.....no

We

We are still out here. And we wish we could help, too.

You are loved

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Thank you for your reply and your story is very similar to mine I had MRI and it revealed the same white lesions on my scan was a very worrying stressful time, I can totally relate to everything you have written, I have tried most things and I wish too there was a cure for every person who has to experience this as you say monster!! it's so dibillitating on so many levels, its good to know I'm not alone and wish you all the best too much love x

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Your story sounds similar to mine. You have my sympathies. As someone already mentioned, there is more than one triptan you could try. I haven’t yet tried botox but am still considering it. If it worked it would be less costly. Some have tried cbd oil with some success. Unfortunately it didn’t help me. Hope things improve. x

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Thank you definitely try the Botox it's the only thing I've found has given me some relief , I've tried the oil but wasn't over sold tbh relaxes you but no good for pain and have just got some gummies to try , thank you x

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I really think you should bring these symptoms to the attention of your doctor. Pins and needles in hands or feet can be a symptom of nerve compression in neck or other parts of the spine. Were you in a car accident or have you fallen? Your doctor may want to rule out pinched nerve with an MRI.

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Hiya I've had a MRI on my neck about five years ago it was clear they say it's all migraine symptoms, thank you for your reply x

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I'd suggest trying other triptans. For me Zomlmitriptan is been working great when others failed.

Also a preventive daily can help. I'm on beta blocker medicine for 2 months now and had 2 migraines and 2 silent ones instead of about 6 to 8, for this interval.

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Try topamax. This hasn’t helped me get rid of my migraines for 3 years!!

I only had a low dosage too. 25mg

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I have previously replied to others if you want to check out my posts. I too have suffered since I was about 12 and over the years have taken endless drugs to try and combat it. Now after ceasing all painkillers, adopting a daily regime of Co q10, magnesium and b12 + a gluten free diet which includes avoiding sugar and all processed foods, I have found a light at the end of the tunnel. I still get migraines, but instead of almost daily ones which meant popping painkillers, I recently went a whole 2months without one! I now use minteaze and tiger balm, applied across the forehead and the back of the neck during an attack and whilst this doesnt stop a migraine it certainly helps to ease it and makes it more manageable. When I went to the migraine clinic and the doctor told me I had to cut out all my meds for a few weeks before starting on a new preventitive plan. I thought she was mad and didnt see how I would be able to cope, she offered to sign me off for a couple of weeks but I just took off the days that I needed to and gradually the new regime worked and the migraines became less often and less intensive when they do occur. I am now medication free and havent had a painkiller for 16months. Hope this gives you 'food for thought' could be the pins and needles are a side effect from the drugs you are taking, I would check that out with your doctor

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"Co q10, magnesium and b12" - is this a combined supplement or what do you buy?

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at the moment I have bought them all separately but there is one that combines them, Dolevent (but with b2 rather than b12) though it did seem to work out rather more expensive. There seems to be a few places that 'migraine relief' tabs but I would look closely at the dosages of each ingredient and make sure its enough, at least bought separately you know what you are taking, have to say I do feel like I'm rattling sometimes lol but it's definitely worth it

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I take Dolovent and have done for months. It makes great claims on its website but it has not been the answer for me. I take Amitriptyline 50mg daily, with the Dolovent and CBD oil supplements. I never drink alcohol and watch my diet, mostly gluten free, low carb and lots of of fresh salad and veg. YET I STILL get migraines and headaches :-( Would you be able to tell me exactly what supplements you buy, PM me if you think more appropriate, I would swap from Dolovent if you feel your regime gives good results? Thankyou

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i would buy the supplements individually at the recommended strengths, plenty of info if you google it. I take b12 instead of b2. the only other thing i take is cats claw, i dont know if this is a factor or not. I do still get migraines but nowhere near as frequently and much less intense, hopefully they will get less and less often. I would go completely gluten free if I were you and check ingredients carefully its amazing what they add it to

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Sorry to hear that. See my post I shared a year ago from the online Migraine Summit. Have a read and see if anything helps: healthunlocked.com/migraine...

I'm also going to London Seminar as held by the The Migraine Trust on Sunday with the top neurologists so will report back next week with a post about their latest findings.

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