My First Episode
One afternoon I was eating a snack (I will neither confirm nor deny that it was a Hostess cupcake) and the tip of my left middle finger suddenly went numb. The numbness quickly spread to all my fingers then up my hand. It moved quickly, and I couldn’t feel any sensations in my hand. The numbness moved upwards to my wrist and forearm. My dad, a former EMT, happened to be with me at the moment. Noticing the numbness going up my left arm, he started asking me to do stroke testing type things – raising both arms at an equal level, smiling, repeating sentences. The numbness quickly continued to spread up my arm, but the numbness interestingly moved almost like a block. When my elbow area started going numb, I began regaining feeling in my fingers. Later, my neurologist would explain this as “marching” paralysis (the paralysis continuously moves and doesn’t stay in one place for too long).
The numbness then became quite bizarre – after my left upper arm regained feeling, I started getting a tingly tickle under my left nostril. This tingling and resultant numbness spread down and around the left side of my mouth, then onto the tip of my tongue (ONLY on the left side). It continued to move into my gums on the left side of my mouth to the point where it felt like I was at the dentist and had received Novocaine. I had no other symptoms during this time – I was speaking normally, no facial drooping, no vision changes, nothing. Once the numbness cleared in my gums, all symptoms ceased and it was back to normal.
15 minutes later, I felt a dull stabbing pain on the left side of my head. Roughly 30 minutes later, this headache graduated into a full blown migraine – sensitivity to light and sound, nausea, splitting head pain…The following day, all I could do was rest because I was completely wiped from the day before’s symptoms.
My Second Episode
My next episode began with vision impairment. I was reading a book, and noticed that I couldn’t see the letters in the middle of the words. There were no black spots, the letters were just simply missing and there was a blank space where they should have been. Within 15 minutes, this vision change spread to complete loss of the right side of my vision. I covered each eye to determine if this vision issue was consistent in both eyes (which my neurologist later praised me for for checking) and it was. Again, no black spots or darkness, my right field of vision and peripheral vision simply did not exist. I quickly noticed weakness in my right arm, a feeling that was questionably missing when my left arm was going numb. This right side weakness (not numbness) was accompanied by loss of coordination – I kept bumping into things on my right side (granted, this could have been due to the fact that I couldn’t see the walls or anything else on the right side of me…). I couldn’t lock my front door or carry anything in my right hand because of the weakness. Around 45 minutes later, the weakness resolved and my vision returned to normal. You would think all these symptoms would be alarming, but the scary symptoms were just about to begin.
At this point, my husband and I were standing in line ordering at our favorite Japanese restaurant. Suddenly, words on the menu didn’t make sense (to be completely fair, we were at a Japanese restaurant so that is somewhat expected). We order the same thing here every time, but remembering our order was like trying to solve a complex calculus question. I just kept muttering words and my voice was shaky. I was starting to get scared.
My vision started closing in on me – not like the feeling of passing out, but more like a telescope zooming into something. Slowly, I started to hallucinate where I was. I could here people around me like my husband and the worker behind the counter, but I thought I was in an Asian restaurant my husband and I had visited once years ago in Hawaii. I was so confused because I couldn’t see my husband or the worker because they weren’t physically in this hallucination, but I could hear them and I knew something was wrong. My husband pulled me away and we sat down at a table to wait for our takeout food. The hallucination began to fade and I recognized our surroundings from a visual standpoint. But then the speech issues began.
My husband would ask me a question, and I would go to answer but no words came out of my mouth. I had logical responses in my head, but I simply could not connect my cognition to my speech. I forgot the word for Monday, and managed to struggle out “day…..after……Sun….” I felt real fear during this, even more so because I couldn’t verbalize that fear. My husband would say a sentence in the conversation and as soon as he finished, I forgot what he said completely. Then I would utter some random word that I didn’t even plan to say. This was accompanied by lots of stuttering because I wanted to talk, but couldn’t think of words that were on the tip of my tongue, and there was a lot of quiet muttering as I was trying to work out words. For the most part, I could understand what my husband was saying completely fine, but I could not articulate my own speech to save my life.
We got our food and began to drive home. Slowly my speech returned. 10 minutes later, I got that familiar stabbing head pain – but this time, on the right side, like all other symptoms from this episode. A few minutes into that, my right finger tips began to go numb. Cue the whole right side of my body going numb in the exact same pattern as the left side just a week earlier, except this time it was during the splitting headache. Once the numbness resolved, the rest of my evening was spent in the throws of a migraine – splitting headache, sensitivity to light and sound, and nausea.
Having accumulated two of these episodes, I called my neurologist and they rushed me in for fear of these being transient ischemic attacks (TIAs), aka mini strokes. Since my father was a former EMT, he always advised us to keep detailed notes of odd symptoms, so I had done so with dates, my activities before the episodes, and clear onset timing of each new symptom. My neurologist said these notes aided immensely in her diagnostic process, since strokes and hemiplegic migraines can be extremely similar, barring minute details of difference. The appointment ended with an upcoming MRI scheduling and her advisement to go to an ER if I noticed new symptoms – specifically loss of coordination/balance and difficulty walking/standing.
My Third Episode (…and the ER)
Wouldn’t you know, three weeks later, that exact scenario happened. I was in my car about to leave a parking lot (thank God I wasn’t driving) and I began to feel vertigo. Vertigo is different from dizziness. Vertigo feels as if you are moving when you aren’t. It can affect your balance because you feel like you’re on a rocking boat, and it feels like the room is spinning and twisting. The vertigo began manageably, only felt when I made a quick movement with my head from one side to the other. Within 30 minutes, it escalated to me fighting off losing consciousness in the bank I managed to struggle to from the parking lot. Thankfully I was meeting a friend at the bank, who sat with me through these symptoms. After attempting for 20 minutes to write a coherent text to my husband, he came to pick me up and take me home. I have POTS, a condition that can cause fainting, so I was familiar with the feelings of presyncope (the sensation that you are about to pass out). I could feel myself slipping into unconsciousness, but fought HARD to come back and maintain my clarity.
Once home, I was seated on the couch and the vertigo escalated from slight unsteadiness to the room ripping around me. When my eyes were open, the room literally twisted and warped to look like a Salvador Dali painting or some horrific drug trip (or so I hear from my more daring friends/the Internet). It looked like the room was the canvas for spin art. If I closed my eyes, it felt like I was on one of those roller coasters that spun in circles while also whipping forwards and backwards. The vertigo was so intense that I became more nauseous than I have ever been in my life. The nausea became so consuming that I had to run to the bathroom. But as soon as I stood up from the couch, I crashed onto my right side, completely deadweight. I didn’t even feel dizzy or off balance, I simply fell over with no impetus. Every time I tried to stand, I immediately crumpled to my right side. Somehow I managed to recognize that these were the symptoms my neurologist was warning me about. I managed to blurt out “ER” to my husband and he frantically crated the dogs. I then [proudly, I might add] pulled off a fantastic dry shampoo hairdo and off we went. By “off we went”, I mean I felt like this trying to walk to the car with vertigo:
In the car, my speech did all the things it DIDN’T do in my previous episodes. I could recall words fine and could speak my thoughts and hold conversations, but my words were slurring and my voice pitch was very low. It sounded like I was drunk and half asleep as I drawled out sentences, and it was truly exhausting to speak at all. In the car on the way, and this is a very hard feeling to describe, I really felt wrong. I even slurred to my husband “something is really wrong” as my heart was racing and I could feel myself slipping into unconsciousness again.
At the ER, we were quickly seen by MANY doctors. The ER doc did the neurological tests that one does during possible strokes, two of which I failed. One he asked me to stand with my feet together and eyes open. I was a bit shaky, but could hold my own. He told me to close my eyes, and I immediately crumpled to my right side again (thankfully into his arms and not onto the hospital floor). The second failed test was the finger and the nose test. I was to hold my arms out in front of me with eyes closed, and touch the tip of my nose with my pointer finger. My right finger was fine, but my left pointer missed my nose completely and touched my cheek [medical term for the symptom = ataxia]. The doctor called in a resident and medical student to witness and learn as he did these tests a second time.
Eventually, an MRI was called for to look for evidence of a stroke, possible TIA, evidence of a seizure, multiple sclerosis, or many other possibilities, and it thankfully returned normal. The on-call neurologist came to see me around 3 am, and again my notes came in handy to describe my previous episodes to a new specialist. He concurred with the diagnosis of hemiplegic migraine, suggesting the possibility of this also looking like vestibular migraine occurring at the same time.
Where Am I Now?
To sum up and answer some obvious questions I know you all must have, I have had migraines with aura before, but that was ten years ago and I had no symptoms like these. I didn’t necessarily feel like I was under more stress now than ever before, but as I explained to my doctor, I’m a military spouse with an aggressive and untreatable autoimmune disease, so analyze that how you will… My neurologist explained that hemiplegic migraine is a very rare and serious subset of migraine with aura, affecting an unknown exact population but maintaining the description of “rare” .
Given that I seemed to maintain a constant low-grade migraine every day in between these episodes, my neurologist wanted to calm down my nervous system and inflammation with a prednisolone prescription for seven days. I didn’t find this to be very helpful, so at a later appointment he put me on Nortriptyline, a tricyclic antidepressant, also known to manage nerve pain (neurological studies are discovering that nerves and hemiplegic migraine maintain a close relationship). I am to keep a detailed log of my days to discover what my migraine triggers are. Triggers are specific to each migraine sufferer – it can be caffeine, chocolate, alcohol, too little sleep, too much sleep, even exercise (that is one of my triggers).
Want More Information on Hemiplegic Migraines?
Because this post was a storytelling depiction of my symptoms that can be extremely helpful for fellow hemiplegic migraine sufferers to identify these sensations, check out my blog post, Hemiplegic Migraine – The Basics and Fast Facts, that goes into more detail on this topic.
If you are a hemiplegic migraine sufferer, PLEASE PLEASE PLEASE comment below so we can be connected! We are a small group and there is very limited Internet discussion from patients on this topic. Whether you are a migraine sufferer or not, definitely comment with any questions and I am happy to answer them all!
9 thoughts on “My Hemiplegic Migraine Episodes – Stroke’s Less Dangerous Twin”
My 10 year old daughter suffers from HM with a lot of the same symptoms you described in this blog. The first one she had when she was 5 years old. We too feel she suffers with a mild headache daily and just tolerates them until they become more bothersome and start affecting her cognitively.
I’m so sorry to hear your daughter goes through this too – especially so young! I wonder if because of her age, it might be familial hemiplegic migraine? Meaning someone else in the family has it too?
Doctors should be able to work with her to try to control that underlying headache. It wasn’t easy but my team worked to get mine under control. Hopefully she can find some relief. I ended up struggling more with the chronic headache as opposed to the HM. My heart goes out to you as parents! A great support system is one of the most important things for us, so keep reading and learning like this!! Thank for reading!
Thank you for sharing-I also have HM!
Hi Angie, thanks for your comment! I hate to hear that, but we a strong community so I know that much about you. I’m glad this post resonated with you, and I wish you good health and head relief! Hugs!
I was diagnosed with HM three years ago. I read your article to my husband, who nodded A LOT. I bumped into a doctor in A&E who recommended a triple aspirin at the first signs. I talked to my GP about this and they were happy to also prescribe a stomach protectant as aspirin can be tough. One week later, all gone. No more alcohol, chocolate and limited cheese. Exercising can set one off almost immediately, so slow and steady wins my race. My children are incredible and when my words go we just turn it into a guessing game. I’ve learned to laugh at bits of it, still cry at others. Work has been tough.
My daughter had tummy migraines as a child, the neurologist explained that these may grow into head migraines during puberty. My mum and aunt also suffer with migraines, mostly vertigo. Learning all the time. Good luck. X
Learning to laugh and cry is a beautiful harmony that I think we all eventually achieve! I love that your husband connected to the symptom recognition as well – keeper!! Oftentimes, hemiplegic migraines can be familial, but hopefully your daughter’s stomach issues don’t become that! Thank you so much for commenting and sharing your story! I love to hear how we all handle it – during the good times, and the bad. Hugs!
Thank you for your story! I could relate to every syllable. Interesting, a hemipelegic & vestibular migraine at the same time. This is me. Thank you so much.
Hi Nicole! Same with me as well, I have experienced many types of migraines, but hemiplegic migraine was a new one for me! Thank you for expressing your connection!