Hi! I'm curious if any of you have never actually had a headache (ever, with any of your attacks)? Like all the auras (sensory, dysphasic, brainstem, hemiparesis), but no actual headache ever? I'm not sure how atypical this for HM. Thanks!
I have been diagnosed with “complex migraine”. Not sure if it’s the same as HM. I’ve had tingling on the left side of my face and left arm, and sometimes in my left leg for at least 4 weeks. I’ve had pressure on the left side of my head and neck for at least 2 weeks. And my left arm feels heavier, though I have full strength. I’ve been intermittently dizzy, like feeling I’m on a boat.
I’ve been to the ER twice recently and had all the tests: MRI brain and spine, CTA, CT venogram and lumbar puncture, lab work and all is good and normal. I’m told it’s just a “complex migraine”. The tingling in my face and arm never stop. Has anyone experienced anything similar? The head pain isn’t even that bad.
I’m on ajovy since January and nurtec as needed. The nurtec isn’t helping these sensations.
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.
I am about a month into an attack at the moment. I’ve had awful days of 3 or more left side pelagic or just weakness episodes and some days of feeling about ok. Pretty much constant headache.
Past few days and at its worst today I have had almost complete disassociation from the left side of my body all day especially my arm. I can move it, although weak and slow, but doesn’t feel like mine at all. It’s like I’m not expecting it to do what it needs to do. And then sometimes it takes a minute to catch up to my brain before it does anything.
It also hurts.
Has anyone else had this??
So about a year ago my boyfriend started suffering from complex migraines. They mimic strokes. To give you a full break down he starts with a mild headache where he’s light sensitive, then he loses vision in one eye and shortly after he loses his speech for anywhere up to an hour and can have drooping and weakness on his right side. He is aware and understands what people are saying he just can’t vocalize it. Following all of that he then has the severe headache. We of course had multiple stroke work ups at first with mris and CT’s and they all came back clear and he’s now been diagnosed with the complex migraines. We are seeing a neuro and currently trialing different medications, nothing has worked yet. Has anyone else experienced this and what treatments worked for you? It would also be nice to just let him know he’s not alone. Thanks!
Hi, since March 16th I’ve been living in hell. Numerous trips to a&e, GP appointments and living through the worst thing ive ever experienced. At the end of March on my fourth trip to a&e the doctor there told me they suspected it’s a hemiplegic migraine.
I feel like I’m having a stroke every day almost. I’ve got permanent damage to my right eye. That hasn’t recovered, I wear glasses now. I didn’t before. I’ve lost myself, I barely recognise who I am anymore and I’m finding it incredibly hard mentally. Before this started I thought myself of quite intelligent (I’m a writer) and now I’ve become someone who can’t even comprehend creating something with my current brain.
It’s ruining my life. Work triggers is, walking triggers it, doing chores triggers it, going to the gym triggers it… basically being alive triggers it.
They’ve given me a neurology appointment… it’s August 25th. This has been happened every day since March 16th. So I don’t have a formal diagnosis and I’ve also had zero tests done. Not one. They just keep offering pain killers and sending me off back home even though my last attack occurred without a headache before, during or after and it was awful. I thought I was about to die. I could feel the artery or veins in my neck trying to escape out the side and my throat was so swollen I could barely swallow water.
I don’t know what to do, or how to manage this. I’ve tried desperately to get my neurology appointment brought forward but they’ve told me they can’t see me any sooner than that. I’m haemorrhaging money, I’ve got no life, I can’t work, my flats a disaster and my fitness has never been worse as I can barely get off the sofa without falling down due to the weakness in my right leg, loss of balance, dizziness etc..
So if anyone can give me some advice I’d really appreciate it as I’ve asked the hospital and my gp repeatedly for some kind of management plan or preventative medication but they’ve not offered me any help and I can’t get the preventative meds without formal diagnosis and that can’t happen until August 25th when I finally see a neurologist.
Thank you (a very scared and stressed woman who is at breaking point)
Has anyone noticed a correlation between hemiplegic migraine attacks and cheap coffee? It’s been my experience that the likes of Folgiers, Maxwell House, and certain Great Value brands trigger them. Anyone else experience the same? I’ve read that they can contain mold and pesticides that can trigger an attack.
How helpful has lamotrigine been in treating others here with Hemiplegic Migraine? I can't seem to find much on reddit about it except in the management of epilepsy.
I am currently on topiramate hoping to transition to lamotrigine because I feel topiramate wearing off in its effectiveness, and the side effects are increasingly outweighing the benefits. It's also not pregnancy safe, and I am hoping to grow my family.
Any experiences would be welcome.
So I had my first migraine just after Christmas then I didn’t get another one… until last night. My first one was triggered by perfume but last night I think it was from being excited?? I was speaking to my friend about something we were planning and got excited about it and then 15 minutes later I got the aura and then the migraine and tingles. I’m not sure if my body went into fight or flight from being overly excited and then the fight or flight triggered the migraine, has anyone else ever experienced anything like this?
It's been over 2 months since I started Ajovy, now I'm having more constant HM's. Mine are almost usually acephalic in nature, but starting Ajovy it's actually caused a bit of pain before my migraines come on. My husband is even hestitant on me trying a third month because of how often my migraines truly are now.
My post a few weeks ago mentioned that mine were almost constant; that's whithout pain this pain stuff with them is new, and my husband feels that if it's making them worse it's not the right medication for me (which I do agree).
With that said, I don't know what my next options are going to be I've tried what feels like almost everything.
Hey guys, I’m wondering if anyone who suffers from HM has found any connection with their liver. I’ve had relatively mild hemiplegic migraines along with regular aura migraines for over half of my life and am sick of medications, bandaid treatments, etc. I’m sure I’m not alone here.
Last weekend I had what doctors think was either a hemiplegic migraine or a TIA. It was very severe and I’m still dealing with the effects and it’s leading me down a figure-out-the-root-cause route which I know is complex. BUT, has anyone here found they have elevated liver enzymes/any issues with their liver or sensitivities and also suffer from severe migraines? Or perhaps you spend/spent a lot of life in a particularly environmentally toxic environment (i.e. second hand smoke in the home, etc.) Again, I know it’s not a one-size-fits-all obviously but I’m polling to see if perhaps there’s something there?
Thanks in advance for your help!
This may be the definition of first world problems but Botox is the only medication that has provided me light sensitivity relief and mitigated a lot of my migraine triggers. But more and more I’m seeing people talk about how stupid it makes people look :( I definitely have trouble moving my eyebrows with the migraine placement and I guess I’m just feeling insecure/wondering if anyone feels the same.
39F, I've had migraines on and off for over 25 years now.
They were always associated with visual auras (zig zag) and unbearable headaches and nausea. Only triptans would help the pain.
Last year, around the same time, I had stroke like symptoms, sudden blind spot and unilateral paresis.
Nothing on MRI and they assumed it was either TIA or a migraine.
I had it again today, when my period is within a week and I recently had an IUD removed(had it for endometriosis). I can't take pills because of the headaches.
It started from my hand and moved up the arm to my face and tongue. I didn't have any beache last year but they asked my to take low dose spirin just in case.. eye checkup was completely fine.
Why has my migraine type suddenly changed? The neurologist is no help tbh. Idk what to do about this. The numbers had gone now but I still feel seird. Reading up on it told me that triptans make it wise. So if I do have a headache, what will help?
Why
Its scary AF, I line alone so Im scared that one day I might just die in my sleep