UK Status Migrainosus, cannot get treatment. Urgent help needed.

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Hi there,

I’m still fairly new to the issue of having migraines as this has only been going on for just over a year now, with very few episodes. It’s been very manageable up until now, but on 14/02/2017 everything just went suddenly into overdrive.

I have had a epic 11-day status migrainousus and spent a day in hospital trying to get rid of it. But they wouldn’t give me any IV medication – no magnesium sulphate, no DHE, no keterolac – just ineffective Triptan pills.

What gives? What do I have to do to get the most effective abortive medicines? What can I do? Will they be prescribed only by a migraine specialist?

Could I have developed chronic daily headaches, or central sensitisation? Is there anything that can be done now? This has utterly destroyed my entire life and left me isolated, helpless and without relief. It has been accompanied by what has been diagnosed as Chronic Fatigue like symptoms, but I wonder now if this was always to blame.

Please help, I’m pretty desperate.

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7 Replies

  • Posted

    Hi Callum

    I too suffer chronic migraine and on a monthly basis hemiplegic migraine.

    I totally feel your frustration 😥

    Unfortunately doctors are still very timid when it comes to dishing out meds for migraine. Many not really understanding the migraine...which leaves them at a loss of what to do.

    Over the years they have steadily increased my meds, albeit without any relief. I feel your pain and frustration!

    Doctors do not like to give out the meds as they alter the brains chemical structure and can have side affects.

    Can I suggest requesting being referred to a specialist headache clinic, I would hope you would find more joy there. It is good to record your migraines too, this will give the doctor much better insight. I use a migraine app on my phone.

    I really hope you find somthing that works for you...please share if you do as I for one will try anything!

    Sending cyber hugs and guiding prayers to you x

    🤗

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  • Posted

    I Callum, sorry to read you are going through this. Similar to you, I had the odd migraine here and there and then whammo! daily headaches, dizziness, vertigo, and neck pain. Through a combination of drugs (Amitriptyline), acupuncture, massage therapy (neck and back area, a source of mega tension for me, particularly neck), and neural block injections, I now have headache free days. Hard to say which treatment worked best, maybe a combination of all. I still have the dizzy spells, but not daily. I can now walk in to a store without having to run out due to a dizzy spell caused by the brights lights and movement around me. Am I 100% better, no, but have seen much improvement. Yes, it becomes physically draining, never felt so drained out, so quickly. Still can't work yet, hopefully one day soon. I hope you feel better soon and get the right doctor/specialist who will truly care to listen.

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    • Posted

      Hi your symptoms are very similar to what I experienced with auto immune disease. You should have a full blood work up including checking esr crp and ana. It is very poorly understood and often undiagnosed.

      Do you have any other health issues...gastro problems or rashes...flushing in your face or upper torso? I am thankfully currently in remission but the migraine and neck pain I suffered were just unbearable.

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  • Posted

    I echo what everyone has said and after nearly 40 years of headaches/migraines I have given up, nobody cares whether it's GPs or consultants they just dish out tablets as though they are sweets in the hope that one of them will work. None of the prophylaxis drugs work and I've tried 4 different ones, even various complimentary medicines and procedures failed to help.  

    I have just resigned myself to a continued life with them, sorry, I wish I could be of more help.

    I think the top and bottom of it is they haven't got a clue what causes them and because some of the treatment and drugs work they think they've solved the problem.  The rest of us just have to suffer.

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  • Posted

    Hi. My story started over three years ago. A sudden episode of severe dizziness, vertigo with being violently sick. I put it down to one of those things but my tinnitus started with vengeance. A few weeks later the same happened. I was left confused as I had never experienced anything like it. After being told it could be meniaires disease and given a hearing aid as now hard of hearing in left ear I had another episode.

    Only late last year I went to see a specialist who told me it is probably severe migraines that was giving me so much trouble, no work for days here and there ect. I was told to take nortriptyline 1 once a day. They worked well for about a month and the episodes came atheist once a week to almost daily. I also stopped having cheese caffeine chocolate etc, but the episodes kept coming. I'm now up to 4 tablets a day and touch wood ok at moment. If I feel an episode starting I take somatriptian to stop it in its tracks. The sometimes work but I'm the same as you. Very frustrated at why I'm getting these episodes and feel the NHS are not helping me with the answers I need to understand the condition.

    The consultant told me the tablets stop your brain from getting into a habit of having a migraine and then look at what the trigger is.

    Hope this helps you.

    I feel your pain and frustration.

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  • Posted

    Hi, I have recently been through this. In November I too had status migrainous. It lasted 12 days and I was at the point of just wanting to chop my head off. I couldn't work, my arm had gone numb, little speech and the visual auras- which normally would last an hour. But it was like my brain had gone into overdrive and they just kept coming- it was miserable. My GP wasn't particular helpful. In the end I paid to see a migraine specialist privately- not something I really could afford. He gave me occipital nerve blocks, course of steroids and has changed my regular meds. The steroids stopped the episode- I'm back to my normal pattern of migraine. Don't know whether youd be able to ask GP to refer you to one of these clinics, I now see the same neurologist on the NHS. I really feel for you, it can be stopped- it's just finding the right person who will actively treat you.

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  • Posted

    Hi,

    I suffered with migraine for years, sometimes two a month. When I started taking prescription diuretics for border line blood pressure my migraines stopped. I'd get the occasional headache but nothing like the migraines I used to have which lasted for 3 to 4 days at a time. A month ago I stoped taking diuretics because my BP is ok, forgetting about my migraines, today I have a migraine. I've restarted the diuretics. I'm not saying they cure a migraine but for me they have prevented them. It may be worth looking into.

    Good luck!

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