The Terrifying World of Hemiplegic Migraine

After a scuba diving accident in 1999, I developed what neurologists called “basilar-type migraine,” a migraine with aura that included neurological symptoms like profound confusion, disorientation, vertigo, periods of short term memory loss, and the like.

To be brief, medications, vaccinations, caffiene, chocolate, hormonal changes, and dramatic weather changes were triggers. On November 7th, 2010, I woke up in what I thought was the worst experience of my life. Profound weakness and numbness on the entire right side of my body. I was probably, oh 85% paralyzed. I couldn’t walk, life my head, or move my arm. My face drooped, my mouth fell open and I drooled everywhere. I couldn’t speak although I could form words in my head. I was so confused I didn’t make any sense. I was hospitalized for several days and tested for stroke and heart problems. Nothing. My menstral cycle started later that day.

In the following weeks, I had similar attacks every day. I was eventually diagnosed with hemiplegic migraine. It was difficult to diagnose as I only have moderate headpain that follows the aura, although it does come with extreme sensitivity to light and sound. I was given VERAPAMIL (a calcium channel blocker) which reduced the severity of my symptoms dramatically. Unfortunately, it has been over six months and I have attacks (albiet “quieter” attacks) about 9 days out of 10 with a debilitating spike around the time of ovulation and menstruation. I will be bedridden and/or in a wheelchair during that time. It can take several days to recover back to “baseline” from a bad attack. Symptoms like nystagmus, tinnitis, and vertigo can be debilitating. After two months, I developed auditory nerve damage from repeated attacks. I had been a 43 year old student prepping for grad student and tutoring algebra students at university when I became disabled. My academic and teaching career ended on November 7.

What the future has in store for me, I just don’t know. I have been hospitalized at Mayo Clinic Hospital, Scottsdale, and still, no improvement. What my future has in store for me, I just cannot say.

As this information is helpful to others, I am including it here.

CURRENT TREATMENT: Verapamil (80mg 3x/day), Riboflavin (200mg 2x/day), Magnesium Citrate Solution (300-400mg 2x/day), Ativan (as needed when I “can’t take it any more”), Compazine/Benedryl/Ativan cocktail to abort severe attacks either via IV in the ER or, if I can swallow, I have a script.

I am going to try other treatments but I am only allowed to introduce one at a time for 8 weeks. This way, my doctors and I know what side effects come from what and we give the treatment a fair chance to work. It’s a process. Meh.

SYMPTOMS: Aura: right-sided hemiperisis, ataxia, aphasia, confusion, disorientation, vertigo, nystagmus, anxiety. Headache: moderate pain on both sides (feels like intense pressure), sensitivity to light and sound, tinnitis (ringing in the ears).

I HAVE EXPERIENCED: After multiple cyclical attacks, not knowing where I was for nearly ten minutes which was terrifying. I have fallen during attacks of hemiplegia and laid in my own urine for 45 minutes until I could move again. I have tinnitis so loud that I now play music in my house 24 hours a day to drown out the noise. Both televisions (upstairs and down) are consistently tuned to the digital new age music station. All lightbulbs in my house have been replaced with low wattage and fixtures only contain one bulb instead of three. NO miniblinds or other light splitting things that cause increased vertigo or pain. Wheelchair, crutches on both floors of the house and grab bars installed. Changed my wardrobe to very big clothes because I’m in bed a lot and I don’t like the feeling of tight clothes clinging to my numb skin. Did I mention I have a 34cm blood clot in my left arm and a small one in my right because my delicate vascular system just can’t handle IVs or even blood pressure cuffs? Ahhhh, my life with migraines. I often ask the universe; “gee, why can’t I just vomit like everybody else?”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (25)
  • Judith Crockett
    7 years ago

    My 17 year old daughter has just come home after 5 days in hospital with a provisional diagnosis of multiple hemiplegic migraines over the 5 days. The weakness has been getting worse the greater the pain. She gets ‘normal’ migraines as well at least once or twice a week.

  • Judith Crockett
    7 years ago

    All five of us get migraines… drs think that the 3 times I took Malcolm to emergency department before Christmas with extreme headache and stroke like symptoms were hemiplegic migraine as well, not heat exhaustion.

  • Melissa James
    7 years ago

    sorry to hear about this I get them too but not bad, hope they can help her.

  • Shirley Moore
    7 years ago

    Wow I really feel for her. I get ‘normal’ migraines and they are bad enough

  • Jan Tolley
    7 years ago

    I’m so sorry to hear that Judith and hope they can find a solution to this. Hope you and rest of family are okay.. xx

  • Sabrina Zanetta Arana
    7 years ago

    It is so hard being a child growing up with migraine “attacks”. I had my first one at age 6. I missed a lot of school because an attack would include complete numbness of limbs and mouth, disorientation, difficulty thinking and speaking. My vision would be off. When I was a child, I would often throw up. The headaches that followed would be horrendous pounding and usually if I was fotunate enough to fall asleep, I could sleep it off. They were usually triggered by stress, not enough food or lack of sleep. My dad had the same kind of migraines, which he outgrew in college. I hoped I would grow out of mine, but so far, at age 30, they are still with me and worse than ever. This website was truly a turning point for me. I finally feel like I am not alone. My migraines have a classification…not just “oh, you get headaches?”, but rather, I have Familial Hemiplegic migraines with aura that I inherited. My doctor only knew to prescribe Triptans for migraines, which are countereffective for this type, which I found out by doing my own research. I stopped taking triptans and while I am still on anxiety pills and Beta Blockers for my blood pressure, I also take a magnesium supplement called “Natural Calm” before bed each night and it has been helping to prevent the migraines.

  • Sabrina Zanetta Arana
    7 years ago

    Thanks Roseann <3

  • Roseann Martinez Lombardo
    7 years ago

    I get migraines but not like that I can totally relate to the pain I’m sorry that you have to deal with that it must be hard take care <3 Roseann.

  • Jane Porter
    7 years ago

    I’ve had attacks for 8 months – thought I had them sorted and went back to work but this past two weeks have not been great, I have fallen over cutting my face, mouth and nose, sat in work unable to move and wobbled my way to the bus stop. Don’t get me wrong they are not quite as bad as they were but it’s still a nightmare and I dread the thought that the full blown one’s come back. Right now if I could just walk properly I could cope – just! I am on Flunarizine as Pizotifen and Pregabalin didn’t work, Frovatriptan and have just had my 2nd occipital nerve injections – any suggestions?- getting to see my neurologist is a nightmare and is often a telephone consult (I am getting one a week which lasts for a few hours to days).

  • La Toya Brown
    7 years ago

    Wow thank u for sharing. These stories are so enlightening very helpful for my finance’s situation as I type, but as the doctors telling us his symptoms are do to a certain type of migraine I’m in such disbelief that a migraine can cause one sided weakness and numbness! Like a stroke the whole 9 yards. He suffers from a migraine pretty much daily.

  • Jeannette Brokaw Lindvig
    7 years ago
  • Sue Robertson Graham
    7 years ago

    my son had a hemiplegic migraine at 11 yrs old and had the numbness all down one side. he had no other symptoms and was rushed to hospital with suspected stroke and after various tests and an eeg he was diagnosed with hemiplegic migraine, the severe pain arrived 2 days later – he was prescribed pizotifen as a preventative and touch wood he is now 19 and has not had any more attacks. my daughter has migraine and gets a numb pinky finger and has also been prescribed pizotifen which have reduced her attacks from 2 weeks of the month to only having 1 attack in the last 3 months – I suffer migraine myself but take no preventatives but am in the process of seeing my doctor to ask for them as migraine is so debilitating 🙁

  • Carolyn Heia Brown Childs
    7 years ago

    My nephew had an attack at age 5 that was finally diagnosed as hemiplegic migraine after suspected stroke and other things (he had headaches all week then one sided paralysis). He was in a coma for a few days as well. He lost some physical skills & went through therapy. Had to relearn some academic skills he had just learned in kindergarten. Happened again about a year later around age 6 but not as severe. I believe he takes medication. He has not had an attack since. He did end up repeating fifth grade, and he has some trouble with short term memory. He is a senior in high school this year.

  • Janice Moore
    7 years ago

    what test did they do to determine this type of migraine?

  • Laura Willis
    7 years ago

    These stories are so helpful! We thought I had a stroke in 2007 – the feeling of being cut in half and losing all use of my left side. They are still trying to figure out what happened. I am being treated for many health issues and will ask my new Neurologist about the posibility of this type of migraine. Thanks for the stories – I found them very helpful:)

  • Felisa Weiss
    7 years ago

    Kerry, have you been evaluated for connective tissue disorders by a geneticist? Your description reminds me a lot of Ehlers Danlos Syndrome- Vascular Type.

    If you haven’t, please look into it… if you don’t already have a comprehensive treatment plan, a diagnosis can potentially open some doors to appropriate treatment. Also, if it’s not addressed, there are certain things to do or avoid, EDS-Vascular can be potentially life-threatening in certain circumstances.

    Kerry, if you would like to talk anymore (so I can share my story & to communicate w/each other), you can friend me on FB & send me a private message.

    Take care,
    Felisa

  • Stephanie Hobson
    8 years ago

    what I ment by hope this help is that anyone who read it can learn from my story as well.

  • Stephanie Hobson
    8 years ago

    l am 28 have had migraines since I was 16 well that I know of and last year I was at a friends house spending the night we were laying in her bed talk when just the left side of my body started tingling I was like someone drew a line down the center of my body it was only half it was very strange this feeling lasted several hours I decided 2 ignore it and try 2 sleep and when I got up 2 got to the bathroom mt friend not me noticed I was dragging my left leg she brought it to my attention I was like no I am not well soon my speech started 2 not sound right again I didn’t notice at this point my friend got really worried and called 911 she lives on the third floor of the apartment building when they got I could move my left side with in like 15 minutes of them being there and getting me down stairs I lost the ability 2 move the left side of my body that I noticed and it really freaked me out got 2 the hospital and the dr said it looks like a tia but I was too young did no scans of my head and just sent me home after I regained movent which took like two hours not knowing what 2 think folowed up with my dr she couldn’t make much of it so I did nothing well like 2 months later I am driving home from work and it all starts again I pulll over and call 911 only this time I lose the abilty to talk almost completly and lost the ability to move within 15 min. of the tingling (thankgoodness I pulled over) now I am really scard what is going on was taken 2 a different hospiatal where they didn’t mess around I was in ct within 10 min. of getting 2 the er was admitted where they said I had suffered a tia I was like this cant b happening ending up losing my job(worked as a nanny) and about a month later at all happens again I am like no way only this time was taken to yet anouther hospital I have several close by like 5 within 10 miles and depenind on where u r is where u go anyway after being admitted the neuro dr at this hospital starts to think this is not a tia consults with my neuro dr and finds out I have hemiplegic migraines took 3 to figure it well the first dr was a jerk and dismissed everything and that didn’t help I have been on a medicine called Topmax it is a med taken 2 prevent migrains I was on it before all this happened and when we finnaly figured out what was going on they upped the dose and I didn’t suffer another quite that bad since knock on wood hope this helps.

  • Dawn Hackelton
    8 years ago

    we just went through all of what was mentioned above with my 11 year old daughter. Her diagnosis was familial hemiplegic migraine, being she is 4th generation. This was my first experience with the facial paralysis and speech that made no sense. We were convinced that she was having a stroke. After 2 CT’s, MRI, MRA, Lumbar Puncture, blood tests, urinealisis and EEG I feel confidant in the diagnosis. We can only pray that this will be a one time occurance.

  • Marylin Hall
    7 years ago

    you and your family have always been in my prayers and will always continue to be. Love you!

  • Julie Perez Harris
    8 years ago

    OMG didnt know my love and prayers are with you Dawn..

  • Krista Schwabe
    8 years ago

    My sister had a hemiplegic migraine attack (they thought it was a stroke) and I have a few symptoms now and then(not as severe as you have). But I can only imagine how scary it is for you. I am so sorry you’re battling this! I have head that some women do get better after menopause. I hope your doctors help you find a treatment for you soon. Thank you for sharing your story.

  • Erica Nicole Carrasco
    8 years ago

    I have HM as well, just like you it is worst around my cycle. I had that one episode that scares the life out of you, mine was almost exactly like yours. Life is so different on days I feel bad to days I feel good, well my good. You should definitely join our group as Rosette insisted, we learn a lot from each other, since most of us don’t know anyone else personally with HM other than family members if you have FHM.

  • Kendra Barney Norris
    7 years ago

    I am relieved to find out that there are others out there suffering from this. I was recently diagnosed at Mayo, after having the first doctor I saw diagnosed me with a stroke. No family history and I don’t know anyone else with this type of migraine.

  • Rosette Alcantara Doyle
    8 years ago

    Great post Kerry, I’m sitting here reading it and it is so similar to my won story! I also have HM and know what you are going through. It helps when you know others and are also going through the same ordeal. I invite you to join us in a group on FB called Hemiplegic Migraine: Hope4HM, where other HMer’s hang out:-) My life has totally changed since the episodes started 3 years ago. I am no longer able to work as well.

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