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hemiplegic migraine

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sanddancer
sanddancer

i have recently been diagnosed with hemiplegic migraines. as its such a rare condition alot of doctors dont know anything about it , or how to treat this debilitating condition. i am typing this because i hope that it may help someone out there who is going through this and the doctors dont seem to know what is going on with them.

my symptoms tend to start two days out from an attack. i usually get a nasty ache at the back of my head , its tends to be dull and very painful, a score of 7-8 is normal. my head will feel like a block of lead, and i become very tired and listless. i tend to do alot of sleeping as well. on the second day my balance starts to go and i stumble about and and i notice my speech gets slightly slirred.

the attack usually induces bells palsey to the lhs of my face, my left eye droops as does my mouth. i have swollowing difficulties and loose sensation down the lhs from face through all my limbs. i get paralysis on the lhs in my limbs. i usually cant pass urine so i have to be catheritised, and am nil by mouth. the attacks seem to get worse each time as well , the last time i was taken to hospital in a semi concious state . i usually start to come out of it typically 3 days after the attack and my left arm is the first to fully recover , while my balance and left leg can take 2-3 weeks to come right . that depends on the severity of the attack . i find that i never make a full recovery either , so i am left with short term memory loss and learning difficulties , and am on a soft food diet only. i can only work parttime now as well, my body doesnt like full time hours and i got very washed out. i find 4-5 hours is maximum for me per day any longer and i hit a wall and struggle to go on. the nurologist said that half my brain goes to sleep which causes this. its not curable and they can only try to prevent reoccurance or limit the effects.

ive tried propanalol and topomax , but they didnt help at all , so im currently on amitriptaline. the neurologist started a weekly dose 5 weeks ago after an attack beginning with 10mg and increasing it over 5 weeks to 50mg. i had an attack during this time and am now on 75mg.

with not much being known about these debilitating migraines im surprised that a nurologist or gp hasnt worked with patients who suffer these migraines and written something for the drs to read as a guide to diagnosis or help prevent them. if any doctor wants to do so them im willing to help with this , to aid anyone else who suffers this rare debilitating migraine.

15 likes, 418 replies

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  • renee47528
    renee47528 sanddancer

    Posted

    Hi,

     I just wanted to let you know how much I appreciate you starting this thread, I have had migraines since I was about three, and in 2006 I started to have crazy sypmtoms such at the left side of my face drooping, and feeling like I hade been to the dentist, after 3 years and about 1 million $ in testing they didin't know what was wrong, then out of the blue I got pregnant and the syptoms went away, then in 2009 they cam back with a vengance, from muscle weakness, memory loss, confusion, the left side of my face would contort and twist up I would'nt be able to to talk or see out of my left eye, not be able to walk because the musles in my legs would tremble so bad, and the pain, oh the pain. After five years and another 500k in medical debt they diagnosed me with hemiplagic migraines, but that there was nothing they could really do for me. I lost my career, my house, my freedom ( as it is no longer safe for me to drive, or on a "bad day" be alone)and almost my marraige. The hopelessness of being told it's all in your head, or it's stress, or that there was nothing worng with me, I was relieved to finally be told that it was this, but to be told there is nothing they can do, it's heart breaking. I am so sorry that ANYONE has to go through all of this. On a up note I have had some relief with a few things, I completely changed my diet, to organic, and NO fake sugars of any kind, and no high fructose sugars, no nitrates, little to no caffine, and no dairy of any kind. I am still working on excersise everyday that's a toughie for me,but it does help. And for the days when I have a "episode" I take a 5mg valium as soon as I feel my mouth start to droop( that's my first warning sign) and follow it up with a shot of Tordal, a 25mg benedryl, and prompty lay down, with that regiment the migraines are only lasting on average of a day. I am working with a lawyer to claim disability, so I can at least help my family finacially, but everyday is a struggle. I hope my story helps others, and for me it is nice to know I'm not alone though I am trualy sorry anyone has to go through this.

    • sanddancer
      sanddancer renee47528

      Posted

      Hi Renee what a carry on you have been through . I had a big attack in early December. It came from know where and lasted a few minutes. Mri scans were done and no bleeds or clots. So hm again they recon. This time I can puff out my lh cheek my mouth is numb as is my left arm and leg .. and it's weak as well . I got told stress and I got annoyed . I have a feeling it was a tia. . As they can happen without leaving any evidence aparantly I'm told. I'd love to speak in Parliament to those in charge and demand more funding to help solve hm which is a nightmare. I can't drive either as I have virtually no concentration . I do a bit too much and I get ill . Chin up we must plod on
    • renee47528
      renee47528 sanddancer

      Posted

      Thank you, I'm definatly in the same boat, it's so frustrating!. Thank you again, I can't tell you how much ot lifts my heart to have someone to talk to about this, and that you understand. Get some rest, and hopefully you'll be up and around again soon.
    • sanddancer
      sanddancer renee47528

      Posted

      I have taken up nordic walking .. I do about 40 mins and I'm tired out .. but it's good to do some exercise . Tried my push bike out but that was a bit too much at the moment . But I have days off it as well ..as if I do too much I get ill. Work is being a right pain as they are using my illness to make it clear they don't want me back .. so more battles ahead
    • margo19504
      margo19504 renee47528

      Posted

      Hello Renee,

      Yes it is comforting to know that you are not alone. As I was not diagnosed  for so many years and could only resort to soluble Asprin for relief, I self administered  depending on the severity.  I feel for you.

      There are 5 things that  I feel have contributed to my well being:

      1/  EAT ONLY WHOLE FOODS.... NO PROCESSED.

      I believe in  a healthy diet of 75% raw vegetables.  I eat fish  and an avocado every day( I don't eat meat), wholegrain cereals,  brown  rice, tofu and NO PROCESSED foods (except for tinned tuna, black chocolate and water crackers). I eat whole yoghurt and  occasionally some hard cheeses. I do not drink fruit juices and  eat only whole fruit. I drink  1/ water, 2/ hot water with !/2 a freshly squeezed lemon juice and pure honey 3/ peppermint tea, 4/ chamomile tea and once a week I have a coffee for a treat . Other treats include a glass of red and some black chocolate a couple of times a week.

      2/ EXERCISE FOR AN HOUR EVERY DAY

      I believe exercise is extremely important: I swim, climb stairs (never take an elevator), go for long walks , do yoga and play table tennis when I can find a venue that doesn't have  fluorescent lights. I use hand weights and a piece of stretch cord for resistance training

       3/ FIND A GOOD CRANIAL SACRO THERAPIST

      The other thing that has helped me  to relieve the pain in my head is my British trained physio who specialises in Cranial Sacro therapy. I would definitely reccomend finding  a good practitioner .

       4/WORK OUT YOUR TRIGGERS

      Work out your triggers..... and  then avoid them. It requires a lot of life style changes but  only you can do that. It's all hard work but the benefits are fewer and less severe  attacks of this  insidious condition.  

      5/ BLOODY SHEER DETERMINATION TO LIVE A BETTER LIFE AND OWN YOUR OWN HEALTH.

      Hope this helps a little. 

      Regards,

      Margo

      ps.... sugar is sugar...... the only healthy sweetner is pure honey

    • renee47528
      renee47528 sanddancer

      Posted

      Good luck with you battle at work. I'm not sure how the laws work where you are, hoepfully better than the ones we have here in the states. 
  • sbkris
    sbkris sanddancer

    Posted

    HI Sanddancer,

    A year ago I went to the ER with all of those symptoms and more.

    What was finally diagnosed was migraine, and it was also discovered that I had autoimmune thryroid disease. ( Discovered through MRI, ultrasound and testing for antibodies TSH, T4 T3 and Free T3 and Free T4)

    A year later I am now completely headache free.

    Wanted to share with you what I did to recover.

    I'd say most of my recovery was due to getting rid of stress and completely changing my diet.Cut out all gluten from my diet and most dairy. Rested, cut way down on work activities. Took a bunch of different supplements also.

    A year ago I was suffering severe monthly headaches, nausea, and after the last one I was unable to get out of bed for weeks,had paraylysis of my arms, could not keep my eye's open, had great difficulty processing information, blurry vision, extreme fatigue, short term memory loss, severe neck pain.

    I consider myself 98% recovered now, still have some issues with memory and information processing.

    Keep searching and don't give up! Wishing you good health!

  • nicole80335
    nicole80335 sanddancer

    Posted

    I think that I have recently started experiencing this. The first time, it only affected an area from just above my ear to just below my arm. The second time this happened, my entire right side was numb. The pain was much more severe and lasted for around 4 hours. When you first began to experience this, did it get progressively worse or has it always been the same for you?
  • yvonne19574
    yvonne19574 sanddancer

    Posted

    hi , my names Yvonne. ivesuffered with Hemeplegic Migraine with Aura and Suna for over eight years now.Ive seen several consultants Nhs and paid private.Ive tried every drug going both 1st and 2nd phases of drugs, spent a week in Ucl London on drip and injection medication etc.it took me three years to find Proffesor Goadsby at UCL London Queens Square. I paid for an initial visit and have never regretted it.My condition like yours got so severe the John Radcliffe in Oxford treat me for a stroke,

    my body had shut down with loss of speech , unable to say words or sentences, severe paralysis down my left side arm and legs.My memory was shot completely wiped several years of teaching and knowledge off in an instant. I still have a very short short term memory.Eventually the attacks were so severe I had to resign from work.five days out of 7 I was having severe attacks with severe 8/9 pain and disability.

    Proffessor Goadsbys colleague Dr Paul Shanahan has took over my case.He is a brilliant gifted nerologist who understands exactly what this condition does to ones life.After trying various drugs with some improvement and side effects  I'm now having Botox injections every 3/4 months trial.I still have the severe hemeplegia and paralysis but the pain scores vary 7/8. I cannot drive or work as I have attacks anywhere at any time , my husband is my unpaid carer and he's brilliant.I need constant watching , cannot go out alone anywhere, always have emergency numbers on my mobile, a medical bracelet on my wrist.I educate as many people as I can about the severity of this illness.Some days I have to use walking sticks after an attack as the semi paralysis affects my left side badly.But I do recommend you ask your consultant to refer you to Dr Shanahan on the Nhs for an initial assessment and advice.Do not accept the plethora of weak medication that is out there some of the trip tans should never be used for Hemeplegic migraine.zsome doctors don't even know or une'er stand the illness. Be brave and educate them kindly.ztgere is hope, there is progress something can be done to improve your life.Good luck don't give up.

     

  • MkSteph
    MkSteph sanddancer

    Posted

    So I just found your thread and I've been trying to figure out what's going on with me as well. First dr thought I had stroke but MRI, ct scan, heart ultrasound, EEG all came back normal Inclusing normal blood work. I believe this is my issue.

    I should see a new neuro next week. Any advice on what to say? I'm not even sure as to my current triggers causing these symptoms.

    • andrew94167
      andrew94167 MkSteph

      Posted

      Hi there ,

      I suffered for a long time now and the first time i was in hospital 6 weeks blind in right eye and couldnt move all right side . After all the tests and the same daying strokes etc ..... a specialist diagnosed me hemiplegic migraines . It never goes away but they can help , stress and other pain triggers mine i really hope you get help .

      Andy

    • sanddancer
      sanddancer andrew94167

      Posted

      I'm try to get myself fit again. I cycle 4 - 5 miles and it kills me. My left leg has deffo weakened and it's a real struggle and the leg is so sore on top of the numbness. I resigned work and have got a parttime one I only hope I can cope with it
  • yvonne19574
    yvonne19574 sanddancer

    Posted

    hi Sandancer. Sorry I didn't reply yesterday due to two day hm with left side paralysis.

    I ended up yet again at A&e to no avail doctors just waver you along home there's nothing they can do when the hemiplegia starts .I find it hard to accept that reading all the Hm sufferers on this website how little understanding and lack of real desire to help there is in medical circles.Its up to us Hms to keep on asking , to educate them to read medical reports etc to chase those with knowledge and understanding and not give up.After eight years of Hm and Suna ( short stabbing pains in the back and top of my head) my medical history reads like a pharmacists data base.Ive tried 99% of the drugs mentioned on the site, each effects individuals differently what works for one doesn't help another , but you can help yourself .

    Exercise in moderation is good but not excessive , I was sent to a physio club only to end up having three attacks for three consecutive weeks during the workout so be careful. eat a healthy low sugar low salt diet but eat natural sugars from fruit dried raisins even dates and prunes, kiwi fruit and if you can stomach it coconut oil in drinks,cereals etc. If your body craves sugar or other things eat little and often.Stay off spicy rich processed foods.Cut down caffeine I know it's not easy but it does help.drink a small glass of water before you have another drink ie tea or coffee. be careful of high saturated fats. Olive oil , coconut oil and hemp oil are good for your system , nothing in large doses. be kind to yourself.i used to try and work through a blind migraine when teaching only to spend two days off afterwards with excessive exhaustion and weakness. read up enjoy the good days don't push yourself too much,tell others. wear a medical bracelet and medical notes in your bag or wallet so if your ill away from home helpers can see the problem via doctors notes.

    Keep a diary .keep a score sheet map out and note what you were doing when an attack came on.You may start to notice a pattern which is help full to doctors and consultants.If your not happy with your treatment as for a second opinion from another consultant.Seek social welfare help if you find your attacks are so regular and disabling that you cannot maintain working safely for you or those around you(machinery etc). Check any insurances you have.When you travel when your well make sure your insurance knows your condition and accepts to cover costs.In the Eu it's not so bad but elsewhere you can be left with horrendous bills.

    Work is a problem if your at high risk to yourself or others .I fall in paralysis anywhere anytime with very little warning.Try not to go out alone.If you are alone let friends know where your going.Protect  yourself and if needed carry a folding stick.

    side effects from certain Drugs can be nasty  if you find it hard to swallow, legs or limbs swell, throat swells. Or a rash etc tell your doctor. Make notes before you see a doctor or consultant.Ask them what other treatment is available if what your on is not working for you after a couple of months or so.do not suffer from bad side effects its your bodies way of saying it's not right for you.Hm is complex and not easy to control,

    no one Has told me of a cure but of good control so your able to live as much a normal life as possible.Take control of your own self help .Realise what really is important to you and what you can let go, stress  does real damage to healing and 9/10 times its not worth it.to your welfare.You can help yourself as much as possible the old guide motto be prepared is a good one.The other is  don't let the bHm get you down, when poorly rest  when feeling better enjoy life simply .never give up .good luck and steady on the keep fit.

  • roisin_86865
    roisin_86865 sanddancer

    Posted

    Hi. I'm new to this. Have been having what were initially described as partial seizures and complex migranes nearly 2 years ago. However, a recent trip to hospital following severe weakness in my right arm, hand and leg left the consultant suggesting hemiplegic migranes. After researching a bit I wasn't sure I fell under these migranes as I had no facial weakness, but I am still trying to figure it all out. I've visual disturbances and problems with memory and getting words out, I smell strange smells and would be in a lot of pain. Last year I had what I now know was a massive episode when I was alone and was disorientated and couldn't speak or account for my time. I have such trouble sleeping and am constantly exhausted. I'm hoping I have an answer after 2 years of guessing but am hoping for any feedback from other suffers. Thanks for reading.
    • StevenRose
      StevenRose roisin_86865

      Posted

      Hi Roisin,

      Hemaplegic migraines vary from person to person and what you describe certainly falls into the HM catogory.  I have suffered with HM for the last 2 years, although I have been taking Flunarizine and started Botox and this seems to have halted the pattern somewhat.  Also an introduction of Nortrptylene has improved things further.  This would improve your sleeping too.  Talk to your Neurologist about these treatments.  They obviously dont work for everybody, but for me, right now, they are working for me.

      Good luck and keep us informed of how you are getting on, trust me we are all in the same boat.

      Take care

    • roisin_86865
      roisin_86865 StevenRose

      Posted

      Ah thank you for replying. I'm very emotional with currently being on day 3 of weakness and pain and the thought of finally getting answers has me on an emotional roller coaster. I will update when I know more. Many thanks smile
    • StevenRose
      StevenRose roisin_86865

      Posted

      thats the nature if all migraines we all go on a roller coaster ride.  But we are all in this together and you will get a lot of support on here Roisin,  There is light at the end of the tunnel, just nag nag and nag again so the drs give you the right meds to lead a life thats at least reasonable, but we all hope it to be great and why shouldnt we deserve that!

      As I said we are here for you Roisin do not feel alone.

      Take care

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