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Hi everyone who has been following my posts.  Sorry I have not been around for a while but  I have had the worst time of my life.  Nothing helped and I have been down to the very depths this time.  I am back on Gabapentine 900 mg three times a day having gone through some serious tweaking of my meds in an attempt to get me off this medication and on to topiramate.  Thankfully I am almost back to how I was before all this.  I am told this will continue for a year unless things deteriorate.  I always say i feel i am going to die and this is really how it is, as everyone who suffers migraine already knows.  I have atypical migraine.  for the last 2 weeks i have been going round with a cleaver in my head and a screwdriver through my left ear.  I have not slept, waking with nausea and extremely psychotic.  i thought I was going to be sectioned.  I am still quite depressed and drained by all this.  I have seriously wanted to kill myself and would have done so if it was not for my family.  I would like to give hope to anyone out there going through the same.  We all suffer different symptoms and different levels of pain.  We have all suffered for varying time spans.  I  do wonder if there is anyone out there who has found a cure for themselves, or perhaps something which contributes towards pain alleviation.  Those of you who have contacted me in the past, I hope you are all doing okay.  Best wishes to all.  (no i am not bipolar - just glad to be back from the brink). xx

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22 Replies

  • Posted

    Glad you're OK.  Know how it feels: the physical pain, the feeling of desperation, the isolation. I haven't found anything yet that either controls the pain or works as a preventative. Just started with diplofenac for pain relief and pregabalin as a preventative.  We'll wait and see! Trying not to build up my hopes for fear of having them shattered in no time at all! All the best.
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    • Posted

      Hi Jill, it's a long trawl and all guesswork. The GPs either find it too much trouble or are really helpful. I am very lucky (I think) with mine. He has been very sympathetic and totally honest. It's down to the neurologist if things deteriorate further but I am not at all hopeful there. The last neurologist saw me for 6 minutes and was so far up his own behind he didn't need to put the lights out to examine my eyes! !! Take care xx
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  • Posted

    Hi Liz,

    Havent found a cure, but the combination of meds and treatments I am now on seem to be helping.

    I also take pregabalin 300mg twice a day, verapmil 240mg 3 times a day, nortriptaline 20mg at night, sumatriptan injections for an attack.  Plus now having botox injections too, which are having a remarkable affect on my hemaplegic migraines.

    I realise this treatment programme is not for everybody, but if you havent tried it, may be worth considering.

    Good luck to you Liz and hope you find something to control the headaches and remember your are not alone in this.

    Take care

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    • Posted

      Hi there, thanks for your kind thoughts. I will keep this regime in mind should things worsen. I'm glad it's helping you though it's a hefty combination. Good luck xx
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  • Posted

    Hi Liz

    Tried botox but not effective in my case though I know it's had some remarkable results in others.  Just changed GP and feeling hopeful.  Neurologist is good but not very personable.  Usually get an hour with him at at time.  (on the NHS). It seems to be all trial and error!

     

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    • Posted

      Hi Jill, I can't believe you got an hour with the neurologist . If it wasn't for my gp I think I would have thrown in the towel by now.
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  • Posted

    Hi Liz

    i see my neurologist tomorrow for the third time, I usually have an hour with her. She has me on clonazepam and propranolol, I also take sertraline. They have reduced my migraine in both frequency and severity. I use Almotriptan and painkillers, 4head and migraine patches and if I am at home I go to bed. I also feel hopeless, tearful and fear I am dying and they usually last 3 days so can take up to three Triptans each episode. I have been through the menopause but for me that hasn't changed my migraine pattern. People who have headaches just don't understand what migraine is like.

    good luck with your journey

    theresa 

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    • Posted

      Hi Tezes, I waited 6 months to see a neurologist for 6 minutes. He was short with me and I sat and cried in the hospital car park for a good half hour afterwards. Although technically he was probably correct in his diagnosis, his change in the treatment regime led to a further 9 months of pure hell. Thankfully my gp has instigated what for me is a period of stability ( says me who has just got over 2 weeks of agony). Nobody who has suffered migraine knows how debilitating the condition is. Atypical migraine can have a life changing effect. I have had to retire from work at a time when I was at the top of my career. Thanks for your support and best wishes for your future treatment results.
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  • Posted

    Hi Liz

    Sorry to hear you have had such a rough time but I'm pleased you are feeling a lot better now.  I really do understand your pain!  Last weekend I came through a really bad migraine, which lasted four days.  Three of them I couldn't even hold me head up for more than a couple of minutes. My Almotriptan didn't have any effect on this occasion. Fortunately though, I didn't have the vomiting which I normally get.

    I know that when you are in one of these episodes it is so hard to deal with or see light at the end of the tunnel.  It feels as if the pain will never go away, but, thankfully, it eventually does. 

    After my four days of pain I recovered enough to attend an important family occasion.  I felt so happy and blessed at that moment I was able to forget how bad I'd felt!

    I hope the times you feel well make you feel optimistic enough to keep pressing on.  There may not be a cure now but medicine is developing all the time and new treatments are being found for many illnesses/diseases so be hopeful! I'm hoping that for all us sufferers a cure or more effective treatments can be found!

    All the best! 

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    • Posted

      I can identify with your comments and feel lifted by the positive comments at the end of your message.  Thank you.
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    • Posted

      Hi Veemae - I apologise for not replying to you sooner - I thought I had done so but it appears the memory is not functioning as well as I thought. Still, I am so much better. I am pleased you are doing better too, it certainly is a trial. Best wishes to you xx
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  • Posted

    Hi, Liz. So sorry to hear what you've been going thru. It sounds really rough. Migraines seem to be very complex. I have been approaching mine from all angles not just the medication aspect. I have reexamined and revamped my diet to avoid all triggers. I also take nutrional supplements such as magnesium glycinate, butterbur and feverfew as a preventive action. I also do regular exercise such as walking, yoga & pilates to reduce stress and increase my endorphins. For my mental health, I go to counseling to work thru my emotional and relational issues and most importantly, I spend a lot of time with God in self-reflection, prayer and  meditation. We are holistic beings and these approaches have been working well for me. Hope these tips help you. Sometimes we need to give our bodies and our minds a rest from everything and then the answers come. Peace and health to you, Patricia
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    • Posted

      Hi Patricia, thanks for your helpful comments. I agree about revamping your life to suit "the migraine you". Over 2 years I have given up all known food and drink triggers. Since Christmax I have given up work. I read but can only concentrate on this when comparatively well which isn't that often, likewise TV, reading magazines etc. I retook up knitting but again can only do this when I can concentrate. I am thinking of taking up painting as I find it relaxing. I want to be able to do more but I need to restore my health first. I wish you well xx
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  • Posted

    Hi Liz,

    sorry to hear what is going on with you at the moment.

    I suffer with migraines frequently and also chronic daily headaches (as you will assume by the name - I suffer with them daily).

    I have tried so many different prescriptions I am surprised I haven't started rattling!!!

    I have been to the neurologist who has put together a treatment plan however the tablets she has suggested so far haven't worked!

    The only one I found to be making a difference was 1800mg per day of Gabapentin & 20mg per day of Nortriptyline however I was still getting migraines although these had decreased to around 1 a week/fortnight meaning now I am currently being weaned off of the Gabapentin and get to choose between trying Epilim or Pizotifen.

    I am now down to 900mg per day of Gabapentin and I am coming to my wits end, I have had a constant background headache for over 2 weeks which seem to be rolling into one big migraine!

    I don't know what to do anymore, my work are being reasonable but I am unsure how long this will be for!

    Have you had any experience with either the Epilim or Pizotifen and can you give any advice??

    Best wishes!

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    • Posted

      Hi bacheyx, I am sorry you are having such a tough time. I am on 900 mg Gabapentin 3 times a day and I also suffer continuous symptoms between migraines. If I were you, I would ring your consultants secretary asap ( the number should be on your last hospital letter or ring the hospital direct and ask for the consultant by name and for her secretary. Tell them how bad it is and ask for advice or a review. I have not tried the treatments you are asking about though I know it can be effective for some sufferers. I hope this is helpful to you. Best wishes.
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    • Posted

      Wow!! That is alot! The gabapentin was working alot better than other medication I have tried however I was still getting frequent migraines.

      When I reased the dose of 1800mg per day my GP wouldnt allow anymore.

      I have spoken to the consultant not too long ago and she advised to follow the treatment plan she provided to my GP (although this is basically trialing a number of different medications over the next few months).

      I'm thinking of trying the pizotifen as this is used prodominantly for migraines.

      How are you getting on with the 900mg gabapentin x 3 per day?

      I really struggled getting up to the 1800mg dose (drowsy and generally spaced out) & I am finding being weaned off of them quite tough too.

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    • Posted

      If I recall rightly, the highest dose is 1800 mg x 3 per day, or 5.2 Gm. I can google it if you want. As I was starting to get a fine tremor, my gp would not raise the dose further. It is the best I have been in 2 years but I still have periods of severe headache, memory problems with this and milder symptoms in between. I couldn't afford to make mistakes at work and the stress of this gave me shingles so I took retirement. I will google the meds and get bak to you.
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    • Posted

      How odd, my GP wouldnt let me any higher than 1800mg per day (600mg x 3 per day).. I noticed my memory was shocking to be fair!

      I have asked my dad re the meds as he is a pharmacist, he hasnt heard of the epilim being used for migraines - only epilepsy however I have taken other anti convulstants previously for migraines so slightly confused.

      I have googled slightly however I don't like to read too much detail because you hear horror stories about every medication that is available haha.

      Thank you so much for your help liz!!

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    • Posted

      Hi,

      I have just added 20mg Nortriptilyne at night, to my other meds of Pregabalin and Flunarizine and I have to say its been a wonderful addition!  Hardly any headaches and sleeping so well now,  I would recommend this to anybody to try! I am also have Botox injections too and they are having a positive effect on my Hempelgic migraines,

      Good luck and let us know how you get on.

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    • Posted

      Hi!

      They have weaned me off of the 20mg nortriptilyne as they initially thought this would help with my chronic daily headaches along with the gabapentin working for my migranies.

      I have heard positive things re the botox injections, although my gp hasnt suggested anything like this as yet.

      Currently going through the treatmnet plan provided by my neurologist however the medications I have tried to date havent worked (other than the gabapentin making an improvement) ..

      meh just generally fed up with it all!

      I havent heard of the pregablin or the flunarizine - are these just used prodominantly for hempelgic migraines?

      I'm lucky not to suffer with these types of migraines!!! How long did it take you to find the right meds?

      Thank you xx

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    • Posted

      Hi,

      Well my Neurologist said that Flunarizine is best for Hemaplegic migraine, but Pregabalin is like an advanced version of gabapentin and is used to prevent all types of migraine as its another neuropathic pain reliver.  I tired Gabapentin first but it wasnt very effective.  But I also take Verapmil with the Pregabalin, Flunarizine and Nortrptilyne and this is proving very effective for me right now.

      It took me quite a while to get the right meds, but the trouble is, in time your body does tend to get used to them and so they gradually become ineffective again.

      I didnt get Botox from my GP, my neuroligist suggested it and since I started the programme, I had no HM so this peases me greatly!

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    • Posted

      I cant even begin to imagine how bad the HM are, my migraines and headaches are bad enough! I definitely feel for you!!!

      I have heard that after a while you can build up a tolerance so just looks to be a never ending cycle of medications lol..

      I'm glad that you havent had one since you have started the botox! thats brilliant news!!

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