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Migraine sufferer

Posted , 6 users are following.

jane00023
jane00023

I have suffered from Migraine since puberty and am now 64yrs old. I appear to have cluster Migraines. During these times I wish I  could hide away but am still working full time and this is impossible, I have never had time off work. I have seen a neurologist and been put on Topiramate and Frovatriptane. These have assisted but I am still suffering, do people realise how you feel , it pulls you down adn you do not wish to talk to anyone. I have a very stressful and responsible job and cannot just hide away. Wish something could take them away.

1 like, 20 replies

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  • StevenRose
    StevenRose jane00023

    Posted

    Hi Jane,

    I can tell you what works for me to lead a reasonable life, with cluster headaches and I really do understand and know how you feel as I have suffered for many years too.  So what works for me is Sumatriptan to deal with an attack, you can get injection, which is like an epipen, or you can get it in tablet form. Plus to help prevent attacks I take Pregabalin and Verapamil.

    Maybe they might help you too.

    Good luck and best wishes, let us know how you get on

  • kate11944
    kate11944 jane00023

    Posted

    Hi Jane, I'm sorry you've suffered for such a long time, I've only been suffering since November and already at my wits end with it! My gp has just prescribed Topiramate so I have to wait for that to get I my system before I see if it helps at all, I'm feeling hopeful though. Do you get any side effects from yours? My neurologist is running two months behind on his appointments so I don't know when I'll get the results of my mri but he thinks I have migraine with aura. For the past few weeks though I've had a horrible headache everyday as soon as I ease up sad I was in tears at the doctors so they finally prescribed me something.
    • jane00023
      jane00023 kate11944

      Posted

      I do get pins and needles in fingers at times . I am on Topiramate. I still get Migraines but have not been back to a neurologist. Hope you feel better soon
  • jayne30845
    jayne30845 jane00023

    Posted

    Hi Jane

    I too have suffered with migraines since the age of 11. I am now 57 and had hoped with the menopause they might lessen but no such luck. I too take topirimate and amitriptyline each day, sumatriptan to take away the pain when I have a headache and ibuprofen if I think it is more of a tension headache.  I have just out of desperation had a diath piercing to my right ear lobe which is yet another method to try and prevent migraines, although not by any means proven. I have had acupucture and loads of alternative thearapy treatments. I have come to the conclusion that if you are destined for a life of headaches there is very little going to cure you of them. I will let you know if the diath piercing works!!

    I do at times question myself if I suffer from an overuse of tablets but when you constantly suffer pain from headaches it is hard not to take medication when you know what the alternative is!!

    Good luck and If you find any good answers, let me know too.    

    • StevenRose
      StevenRose jayne30845

      Posted

      Jayne and Kate, Good luck with Topirimate, but I have rarely found anybody that it works for them.  For me it made me suicidal,
    • kate11944
      kate11944 StevenRose

      Posted

      Hi personal I've only been on them for them for 3 days and I'm hoping I don't get any bad side effects but anything has to be better than a constant headache among other things.
    • StevenRose
      StevenRose kate11944

      Posted

      You are absolutely right Kate and I wish you good luck with them.I went through loads of different meds before I found some that actually worked.  At one point they put me on steroids to buy me some time while they tried me on another.  I know its hell when you get a headache and whats worse is that many people including drs dont always take us seriously do they.  I have had to nag and nag to get anywhere, whats your experiece?
    • kate11944
      kate11944 StevenRose

      Posted

      I started with headaches in November last year which came out of the blue. I lost the vision in one eye a few times, woke up with a numb face a few times too so I got referred to the neurologist who suggested migraine with aura but I don't get a pulsing type headache it's a constant pain. My neurologist ordered a MRI and said he'd see me in 3 months but he's running behind so hasn't seen me yet so I had to go to my GP because I'm really struggling lately with headaches daily as soon as I wake up so he prescribed the topitramate. My GP said he doesn't want to interfere to much though and said I'll probably have to have a nerve conduction study done and maybe a lumba puncture doing as I have a lot of nerve symptoms going on also, they've been going on longer and gradually getting worse though. What about you?
    • StevenRose
      StevenRose kate11944

      Posted

      well I started with cluster headache about 10 years ago and at first they werent too bad I could control them easily and I only got them once in a whle, but OMG they were fierce.  Then I started getting them all the time and the medicine wouldnt work.  so I had endless trips to the neurologist for MRI and other tests too.  I had nerve block injections in the head which helped for a few days only.  Then I started getting Hemeplegic Migraine about 2 years ago which hospitalises me as I cant walk.  Now I have Botox and another medicine called Flunarizine which together seem to control my headaches,

      When you said you get a numb face, this is one of the first things I get before my whole left side goes and I get taken to hospital as a stroke case.

      You could ask about Botox, its been a revelation for me on the HM, but no good on the cluster

    • kate11944
      kate11944 StevenRose

      Posted

      How do you know the difference with a cluster? I get the ice pick ones at times too they are horrible! I have all sorts of numbness it's just my face and tongue went numb with slurred speech at the time of a really bad head and loss of vision. I have burning sensations throughout my body and like crawling and trickling one too, so much fun. Yours sound so scary, must be horrible for you. I'm on my own with my kids so I kind of have to grin and bare it most of the time sad
    • StevenRose
      StevenRose kate11944

      Posted

      when I get a clueter headache its just one side, centred over the eye and its like a red hot poker going in.  It feels like someone is actually squeezing my eye and the pain is horrendous.  when I get HM,  which you have some of the symptoms too, its starts off pins and needles and tingling in my left cheek, then my arm goes numb, then leg, my speach is slured and I am photofobic.  Before it gets to this stage I have to call an ambulance else they wont be able to understand me.  My gp says always call an ambulance as you dont know if its a stroke or not and neither do the paramedics.

      Its tough for you too with kids, how many do you have?

    • kate11944
      kate11944 StevenRose

      Posted

      Wow that sounds painful, mine is always one sided at the back of my head though. Except for the ice pick headaches they are at the sides. I did say the next time I lose my vision I'm going to go straight to the hospital at least so I've got something on record if nothing else. I've got 3 children between 2 and 14 so I don't have time to be poorly.

      Apologies Jane for taking over your post.

    • StevenRose
      StevenRose kate11944

      Posted

      Yes for sure its really scary but at least the Botox has helped a lo,t also destressing my life.  I have done a lot of research into HM and stress plays a signifcant part in how it develops.  Consider Botox Kate its been wonderful for me.  My Neuro team at the National Neurologcal hospital in London does them.
    • kate11944
      kate11944 StevenRose

      Posted

      I will definitely look into it when I finally get back in with my neurologist, thanks for chatting personal smile
    • StevenRose
      StevenRose kate11944

      Posted

      Good luck Kate, hope you can get those migraines under control as well as you do you kids :-)

      Be good to hear how you get on at the neurologist

      Take care

    • jane00023
      jane00023 jayne30845

      Posted

      I agree with you I am sure I occassionally go over the top with medication but I need to get through the day at work. I now cannot take having a headach even.
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