Live in fear of my next migraine

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My aura is so bad I lose speech and feeling in my arm. I know it is "just" a migraine, I've been assured by neurologists. However, this has led me to live in constant fear of getting my next migraine? Can anyone relate? How do you guys avoid being scared by your aura?

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  • Posted

    Hi Jen,

    It's all very well for your neurologist to say "Its just a migraine", the type you are getting and I do too, is Hemaplegic Migraine and they can be scary things to get, as you feel you are having a stroke!  So I know what you are going through, I have been admitted to hospital 3 times this year and like you, I dont want anymore!

    But there is hope for us Jen, if you havent done already, ask your neurologist for Flunarizine and try and get on the Botox programme.  I know it doesnt work for everybody, but at the moment this is working for me, so like I said, give it a go and see how you get on.

    Good luck Jen and hang in there, hope and light at the end of the tunnel is there for us!

    Take care

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  • Posted

    Hi Jen, I have hemiplegic migraine also. I have had to pull in when driving as I thought I was having a stroke. The pattern of my migraine has changed over the past 2 years such that when I get tingling or pain in my left ear I know I am in for a rough time. I have had 3 clear days since The beginning of March which includes days when I cannot talk.
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  • Posted

    Hi jen I've had migraine with aura for years and every single time I get it is as scary as the last.sometimes I've felt faint with it and I do get so tired for a few weeks before I get an attack and for weeks after theirs no quality of life with it and no medication I've been prescribed has worked for me.I think ivcould cope with it better if I didn't suffer the aura and numbness in hands and face.my next step is a tablet for depression which my doctor has recommended so fingers crossed for some relief.
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  • Posted

    Hi Jen, Like most of your friends on this site I have severe HM and at first for the first three years I was scared about Strokes and any serious complications, now my main concern is the ignorance and sadly lacking

     of understanding of some neurologists who know very little and have the emotional IQ of a molluscs .I have been so very fortunate to find through persistent searching on the web and with understanding doctors a really good neurologist in the UCL in Lodon at queens square.

    yEs it can be scary at times but the more you do for yourself ie medical bracelet, doctors notes and list of meds in your purse and handbag together with having an emergency helper number on the back of your mobile for

    urgent contact if needed , letting others know if your doing something or going somewhere out of your routine can really boost your confidence.

    Ignore neurologists who have no understanding I met one once in Morrison Hospital in Swansea.I had a bad attack during a church service.All the helpers at. St Illtdys  rallied around because I was unable to stand or sit up,

    hardly talk apart from jibberish .I was paralysed with severe 9 grade pain.

    The paramedics thought I'd had a stroke, oxygen did nothing for me so I was taken to Morrison AandE.There I was examined and when realised my paralysis was real I was admitted to a ward.Where upon in walks a smug 

    30ish neurologist along with his student.When he read the notes he smirked

    and laugHed and said Oh a migraine I had one this morning and I'm at work

    its nothing.What absolute ignorance and arrogance.The sister of the ward was disturbed by his attitude she could see what a state I was in and that I couldn't walk properly or speak properly with paralysis down my left face arm and leg.She didn't want me to go home but I was so disgusted by that

    doctors attitude I begged me daughter to get me out .We borrowed a wheelchair and I got a friend to collect me.I only wish I had got his name and made a formal complaint as it was I was semi paralysed for several days in pain , with slurred speech and unable to look after myself.

    Since then I have found a good neurologist Dr Paul Shanahan .He really does know the condition and understands f ears doubts and misunderstandings.There are drugs and Botox for severe cases .Since 2006 I have had many attacks usually now 7/8 some occassionally9  roughly three weeks out of every four but

    I don't feel as scared because I know my doctor where I live and my neurologist both show professional care advice and support. they want to do everything possible to help me improve .I personally tell people about Hm to educate them about it , many just think migraine is a bad headache .

    The aura is scary but begin to acknowledge this will not last , once the

    Hm is working itself through the body it will gradually improve it may take hours but it will decrease .Prepare your friends by saying what the warning signs are , what they can do to help you.Carry your doctors and neurologists numbers in your purse.These precautions in place mean you can then appreciate the good days and try to get on with life day by day.

    Buy yourself some flowers from a supermarket , treat yourself occassionally

    with simple things a new bath gel, listen to relaxing music, light socandlbut don't fall asleep

     

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  • Posted

    Hello Jen, what you have is a rare form of migraine called Hemiplegic Migraine. Unfortunately you will have it for life but you can help yourself by working out your triggers and avoiding them, It's hard work and means changing your life style, eating very healthily and exercise. My main triggers are fluorescent lights , computer screens (so I always reverse the colours so I'm using white on black) and on the lowest light setting.  Contact Migraine Action  in UK and they will send information.  I'm an Australian who has lived with this for 24 years , 20 of those were without being diagnosed.  Knowledge is empowering. It was such a revelation to find there were other people who suffered like me. Hope this helps, Margo
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    • Posted

      Hi Margo, likewise I am finding computer screens don't help as does holding a phone to my ears, particularly my left ear. Sound plays a huge factor in my case but bright light does affect me.
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    • Posted

      I woke up from a brain tumour operation with HM 24 years ago, although it wasn't diagnosed until 4 yrs ago.  I have not slept in the same room as my husband because I could not bear the sound of his  breathing and have slept with ear plugs all that time as the slightest sound would wake me.  I hear the slightest sounds: taps dripping, clocks ticking, people chewing with their mouths open. However, some louder sounds don't phase me. Fire works , Japanese drumming and  music with  strong base  that goes through my bones is unbearable. MY LATEST OF  What NOT TO DO is  flying  through 8 time zones, ie flying East /West, Australia to Italy.....it's just over 6 weeks and I'm still not  fully recovered. Flying North/ South is fine as long as I don't cross more than 2 time zones. So HM sufferers be cautious. Has anyone else had an attack from "Jet lag"
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  • Posted

    Hi jen

    i don't always get the aura, but when I do it's so scary!

    my lips go numb, my speech gets slurred, and numb arms and hands too. I Hate it. Thankfully it never normally lasts more than 10 mins, but I do worry if I'm more susceptible to stroke in the future!

    xxx

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    • Posted

      I suppose I have learnt to deal with it over the years, it's happened a lot at work, where I lose vision I just have to sit and wait for it to pass, then when I can see and feel my arms are back to normal I quickly drive home and try and sleep it off, as soon as I feel the slightest symptom I take more pain killers than I should to try and fight it off. Hate taking too many pills all the time tho xx
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