My Experience with Hemiplegic Migraines
Updated 14 April 2023.
In this post I will be sharing some of my experience with hemiplegic migraines which are rare versions of migraines presenting symptoms similar to that of strokes. I am not a medical professional but would like to put my experience in writing in case there are other people experiencing the same thing.
For some context, I have a varied history of migraine comprising ocular, vestibular and hemiplegic events. Frequency of each has been variable between childhood and adulthood. The hemiplegic migraines were strange as they had not been experienced until early adulthood. I can’t remember the first year it happened but I would estimate that I was around the age of ~20.
When it Started
For the first event, I remember playing a game at my computer using a joystick, my hand on the joystick was obscuring part of the screen but I was so focused on the screen that my hand might as well have not existed.
At some point, I left the screen to eat food, but while eating I noticed that the fork in my right hand was not hitting the food or plate where I wanted. I thought that it might have been caused by muscle strain after using the joystick at the computer, however it became more apparently to me that something was actually quite wrong, and that I could not get my arm to move where I wanted it to, by the time I finished eating.
I went to the kitchen and reached for the fridge door and drawer handles, but every time I went to grab something, my hand missed the target. It’s at this point that I became very worried and my mind immediately went to the concern of brain damage, or stroke. I was losing coordination and control over one arm and I had heard rumors of this happening to people with much more serious conditions in the past.
One thing that did strike me as strange was: why am I feeling perfectly normal despite the fact that I’ve lost control of my arm? Something wasn’t quite adding up, surely if I had damaged my brain then other much more concerning symptoms would also be present.
My anxiety was building up and if I hadn’t been quick with my research then I might have called an ambulance. Thankfully, for some reason, I had the intuition to google ‘migraine lost control of right arm’. I was very used to having other types of migraines in the past, usually triggered by conflicting stimulus (most often vision/balance, which would later become a more serious issue in 2022 / 2023 when combined with chronic BPPV episodes). Over the years I had casually heard from ‘experts’ that migraines were things that started a long time in advance and could not be ‘triggered’. This is not true. Some migraines do start some time in advance, however, as I later learnt through a complex multi-year struggle with vestibular symptoms, depending on whether your brain has maladapted to certain stimulus, combined with risk factors such as significant nutritional deficiencies, you can absolutely trigger a migraine when specific conditions are met. Nutritional deficiencies can significantly lower the threshold for migraine to occur when the stimulus you are experiencing does not match your brain’s expectations (a term called mismatch). The medical literature has not necessarily caught up with this yet. I have recounted my experience in a public video. This causes long-term issues for people recovering from vestibular (balance) events (refer to BPPV, VM, PPPD).
Continuing, I knew that I had been playing a game for a few hours prior, and that my right hand had been obscuring the screen that I had been focusing on, so it couldn’t be a coincidence that it was now my right arm that was losing coordination. Perhaps the brain expecting the arm not to exist may have triggered the event.
From that short research, the term ‘hemiplegic migraine’ appeared and immediately gave my anxiety some relief as it contained a pretty accurate summary of what I was experiencing. Up until that point, I did not know that migraines could affect coordination.
Hemiplegic migraine is a rare disorder in which affected individuals experience a migraine headache along with weakness on one side of the body (hemiplegia).
- rarediseases.org
Note: Most of the migraines throughout my life have been ‘silent migraines’ meaning there is no headache present. This fact has maintained true throughout both childhood and adulthood. Usually there are a series of very recognizable symptoms comprising what is known as an ‘aura’. For me, ocular migraines usually start with a sudden mood change where I become lethargic and apathetic, but not worrisome. Blindness often occurs where it seems like the blind spots of the eyes are growing and moving across my vision.
Vestibular migraines begin with a growing visual-vestibular mismatch (or central vertigo) sensation. This was often followed by directional vertigo and eye spasms (nystagmus), and an eye drift that does not change direction with positional movements (a clear sign that neural circuit dizziness is occurring rather than mechanical inner ear dizziness).
For some reason, it surprises people to hear that a migraine is not a headache - a headache is just a symptom of a migraine. This common misconception muddies the internet when people experiencing complex symptoms are searching for information and anxiety relief.
Continuing with the Story
So at this point, my only symptom was one arm with lost coordination, which would be strange for one of my previous migraines because (as noted above) there are some usual telltale signs before other symptoms appear. But not this time, emotionally I was feeling completely normal apart from the sudden new medical anxiety.
I went to lay down on a bed and see if any other symptoms would start to appear, which they did. Interestingly, hemiplegic migraines have proven to be the slowest-manifesting of all my migraines (though not necessarily the longest-lasting). Again, the length of the migraines seems to depend on the type and risk factors. For me, vestibular migraines seem to last the longest at around 48 hours (with the first 12-24 hours being significantly debilitating).
Strange Vision
While laying there, I performed a series of continual tests on myself to see if anything was changing, one of which was vision-based. I would raise both arms and hold my hands out where the blind spots for my eyes were. My left arm was consistently present in my periphery but the right arm was not - as if it was being erased from my vision when I was not looking directly at it. It also just ‘felt’ like the arm did not belong to me, which is a very difficult thing to explain to someone who has never experienced that before. I would describe this as a ‘qualia’ element. Qualia describes a feeling that cannot be described. For example, you cannot properly convey with words the experience of a color to someone who has been blind for their entire life. Likewise it feels very difficult to convey the feeling of losing ownership of a limb to someone who has never had that experience before.
It felt like another person was holding their arm up in front of me. The sensory signals for it were there (warmth, strain, tension), but they didn’t feel like a part of my brain.
For the vision, it really felt like the brain was trying to remove the arm from sight when I was not concentrating on it. Like the arm was no longer a part of the ‘peripheral hallucination’. You may not realize how in day-to-day life, your brain needs to fill in many gaps of your experience. These are continual hallucinations, but we don’t call them as such because they are not noteworthy. However when something removes itself from the experience (like a missing arm), you really start to become aware of the behavior.
Pins and Needles
Tingling / pins and needles were the next most obvious symptom. I believe it first appeared on the arm before appearing on the right side of the face. It did not occupy the entire arm, instead it appeared in small clusters which moved over time. It felt almost like a series of small, invisible creatures moving across the skin, causing pins and needles where they moved. This was especially present on the hand, moving down the fingers and around the tips. It felt different to regular ‘pins and needles’, which is usually much more generalized, for example when laying on your arm while sleeping. Instead of a large area, it felt like small migrating clusters.
The sensation was particularly interesting around the face, where it travelled around the cheeks, lips, nose, eyes, and even strangely: inside of the mouth and along the tongue. Here it moved up and down the side of the tongue and towards the tip, but the most important thing to note is that when the clusters reached the tip of the tongue, they stopped exactly half-way. It was as if someone had drawn a border straight down the middle of the body and told the sensation that it could only exist on the right side.
If there was any doubt that it was a hemiplegic issue (something affecting only one side of the brain) then that was the giveaway clue. The tingling only affected the right side of the body and refused to move to the left side. The right side of the body is commanded by the left side of the brain, so we can deduce that somewhere the left side of the brain was experiencing the migraine.
A general but mild numbness was experienced for the right arm and it also felt slightly heavier to lift it up.
A Note About Naproxen
NSAID (non-steroidal anti-inflammatory drugs) do absolutely nothing to improve any of my aura symptoms during other migraines. In fact, they can make me feel worse as they irritate my stomach and therefore amplify nausea sensations.
However, for some reason I still do not understand, I discovered that Naproxen (specifically) disables my hemiplegic migraines.
Note: On a following occasion where I could feel a hemiplegic migraine starting with the pins and needles presenting themselves in the right hand as the first symptom, I took Naproxen which I had heard recommended by a ‘migraine specialist’ on TV, and to my surprise, it completely stopped the event. It was not even a subtle improvement and I don’t reasonably expect people to believe me when I say that about 30 minutes after taking Naproxen, the pins-and-needles sensation literally ‘switched off’. It was there and then after a while it immediately wasn’t - no gradual change, just a sudden removal. This in particular struck me as very strange because drugs don’t typically work in a very binary way like that, but I wasn’t going to complain.
Obviously everyone’s bodies will respond in different ways to different drugs, but this is just a record of my personal experience. I suspect this is due to the specific location and mechanism of hemiplegic migraine being different to ocular or vestibular events.
Unable to Speak
While laying on the bed, my mother came to join me, who was rightfully concerned as the symptoms are often compared to those of a stroke. She called my father to let him know what was going on, and during the call I gestured that I wanted to speak to him. In my mind, I wanted to explain what I as feeling but to my surprise, I found that even though I could ‘feel’ what I wanted to say, when I tried to speak, I was unable to form a coherent sentence.
This is yet another experience that is very difficult to explain (qualia) to people that have never lost the ability to form words. The closest thing I could compare it to is a panic attack, except without the panic or breathlessness. There’s something about the fight or flight state that prevents the mind and body from forming a sentence.
For the hemiplegic migraine, it’s very similar to this but with a much more mellow context, the connection from intent to word to speech is disrupted, like a piece of software glitching out.
As far as I can remember, I think I got a few words out with very concentrated and intentional effort before handing the phone back.
There are examples caught on camera of people experiencing this symptom quite suddenly. One that caught attention online was of a reporter who lost coherent speech while live on air. Of course this is an embarrassing thing to happen to someone, but it is an important example to show just how strong the effect can be. You could possibly describe it as the speech part of the brain short-circuiting.
The Headache
The last obvious symptom to appear for me was, unfortunately, the headache. As I mentioned earlier, my previous migraines had almost always been silent, meaning that no headache was ever present, only the ‘auras’ (which is the term used to bundle together all of the other symptoms that comprise a migraine event). Headaches are very rare for me, and I remember a neurologist I later spoke to described that as ‘strange’. Sadly, I did not manage to escape a headache this time and yes, I’m sorry to say, it was a killer one.
The headache lasted for the rest of the day and I believe I was feeling mostly better by the next morning.
Be Careful
If there is anyone reading this who may be experiencing the same symptoms, please go and lay down because you are in no functioning state to operate your own body, let alone heavy machinery. Ideally, have someone keep an eye on you, testing your coherence and speech. Please note: you may be having a stroke - it is important not to shrug any of the symptoms off.
Listen to your symptoms and pay close attention to how they change. My thoughts and feelings throughout the first event were very clear. I was very present in mind and could signal to my mother for things all throughout the process. Other people may not be as coherent and it may be difficult to distinguish between a hemiplegic migraine and a stroke.
Obviously, please consult your doctor / a medical professional for advice. I am just sharing my personal experience in case there is anyone who is confident they are experiencing hemiplegic migraines and wants to reduce their anxiety by knowing that they are not alone.
I have had a few hemiplegic migraine events since this first one. The second happened on the opposite side of the body (and I let the whole event unfold), and following two were stopped by Naproxen before progressing.
Thank you for reading and stay safe.