Hi there,
I am a 34f that got diagnosed with Hemiplegic Migraine 3 months ago. My first attack was quite shocking. It started with pain on the left side of my face (a burning feeling) and within 30/40 minutes I started to slowly lose the ability to move my whole body and was overpowered by a hefty sensation of sleep. Ended up going to the ER, where they suspected I had a stroke. They did a CT and MRI scan but couldn't find anything, after a cocktail of medication and 5 hours later I was able to move again. Within a week I visited a neurologist that diagnosed me with Hemiplegic Migraine.
In the past 3 months I had several attacks, specially in the first month where they happened every 3/4 days. Now it feels more stable and I get them every 2/3 weeks. Especially around my period (my first one was also around this time). From what I have understood everyone has a different way in which they suffer attacks. Mine are usually, tinkling in my body a few days prior and once I get the attack I have this sense of extreme sleep and get tears in my eyes. I never have a headache, and a very slight pain in the left side of my face. Usually once I feel the symptoms coming up I take medication and end up falling asleep. I experience this heaviness in my body and sometimes even difficulty walking after taking the medication. But usually I am extremely tired for 2/3 days after the attacks.
Does anyone experience the same?
How do you manage your attacks?
Did you ever have a second attack in which you lose complete movement of your body?
How has it affected your daily life and how do you go about it?
I am just so scared of getting a attack again in which I am not able to move again. I noticed it really changed my daily life. I am often scared of driving too far away from home on my own and carry a set of pills everywhere I go (have them in my bag, car and home). I also have a toddler, so sleepless nights are currently a no go as it triggers me even more. Which means I sleep very early to try to compensate my sleeping hours in case she wakes up in the middle of the night. Since I was diagnosed recently, it also makes me wonder if pregnancy and postpartum after being diagnosed would even be an option. I am so afraid that I will end up having constant attacks due to hormone changes and lack of sleep. Does anyone have any experience with this?
Just curious to hear how other people go around the subject.
Thank you in advance.