With all the comments it finally feels good to know that I am not alone. Thank you so much for bringing this to light, I've been lost in pain for years. I hope we conquer this.
I have these. Absolutely terrified me the first time. I was 20 and thought I was having a stroke. They put it down as a TIA as I never had migraines before. I know it was this now though as I recognise the triggers.
I have been having numbness and reduced motility in my right hand, swelling on my right arm, leg, and face too for 7 years now. I finally was given a diagnosis today and I had happy tears to be given a name. I had blood work and everything was normal except low vitamin B12. Now that makes sense! I had kept being told I was fine that there is nothing wrong with me. But I know I’m not crazy!!!
I've been dealing with hemiplegic migraines for 7yra as well. Just diagnosed in 2020. Do you have autoimmune disorders as well? I'm wondering if autoimmune disease could be causing neurological inflammation.
Currently on migraine status right now. Taking comic spray. Maybe steroids tomorrow after migraine clinic specialist consult in the AM My trigger: severe rain storm with thunder and lightning.
My grandmother had it and I was born with this, I have pictures of me at 6mo old with facial pulling and first words were "head hurt" it has controlled my entire life, now I have had a daily attacks for the last year 365 days of facial pulling, shaking, losing verbal control all the symptoms. I am just ready to die😢
I have had two since February. The first time I went to hospital with mini stroke symptoms. A scan was clear and they diagnosed hemiplegic. I had a second one the beginning of this month. They are scarey. The Doctor has referred me to TIA for more tests.
I have had the migraine headache for two months none stop having all the signs of a stroke and I was in the hospital for a week then they did say it was Hemiplegic migraine headache .
I have this condition. I also have RLS . I went to hospital thought I was having a stroke. 5 years of this ! Now I have some idea of how to treat it.Thank you
I have Hemiplegic migraines and the biggest game changer has been a paediatric chiropractor! I’d love to talk to you about it. The connection to Hemiplegic migraines and your nervous system is crazy. I went from having 4 migraines a week to one every 6-8 weeks.
Fucking spot on for the CO2, for lack of a better, more delicate word. Had my first hemiplegic migraine today the moment I did breathing exercises with breath hold. Thought it was a stroke and ended up in the ER !
My triggers are cottage cheese, keffir, eating egg yolks two days in a row, or drinking two hot chocolates in one day instead of one. Or eating normal cheddar cheese for too or three days in a row. Also sleeping on the wrong side with the wrong sized pillow. And lastly Bergamot or Earl Grey tea.
I have had these for 40 years. I have tried everything. The episodes still happen. The only thing that relieves pain is ice pack on the back of the neck. If I can get it in time. Usually lasts 1 to 2 days. This is very helpful. Thank you
I get hemiplegic migraines around every 4 months or so and they are terrifying especially since I am over 50. If I was having a stroke I wouldn't know it and I don't go to the ER as they tend to view you as a drug seeker so I just deal with it. I have tried EVERYTHING! now I just ice my head and wait it out. It takes about 3 days before I can use my left side normally
How long have you had them, is life still worth livving. Personally my life sucks as it is but with migraines once month i feel like maybe life isnt worth all this pain. Going to go get an mri soon idk.
I average 15 attacks a month, some lasting days. Emgality has cut the severity but not the frequency. Took 10 years 12 Neurologist Before I was diagnosed. Many visits to the ER thinking i was suffering from a stroke.
I went 10 years without having on then bang out of no where it hit me its about a week after ive had the migraine and my eye sight still feels off is this normal
I just discovered that I’ve been having these for 10 years now. I don’t have them often, but when I do ( like a few days ago) it’s terrifying. Not sure who to see or what to do next.
I started getting hm when I was in high school and had told my Dr for yrs and she never batted an eye at it! So many people over the yrs didn't believe me! I finally saw a nurologyst who finally diagnosed me after much testing! Anything can trigger it! Ya allot of help smh Medication don't work too prevent it! What I did was document what I ate how much sleep stresses weather excetera... I went from 2-5 a day to less than 10 a yr! I can usually tell when I am going to have an attack! I feel off sometimes kind of vacant I eat a high protein snack drink lots of water and take Tylenol! It sometimes keeps stroke like symptoms minimal to where it only get minimal symptoms or Skip a few symptoms sometimes migraine is minimal or not prolonged to where it's manageable! Stay strong it's not easy! Hope this helps!!! ❤️
I have been having them over ten years or more but it was just like one week or two weeks and then it's gone but this last time I got it I felt as if it was a stroke because I couldn't walk I had no feelings on my left side and I couldn't see for three weeks I was scared this last headache lasted for two months none stop I felt I was going crazy because I once forgot my handbag in a public place just couldn't remember anything
@@antoinettefoster7538 Make sure you see your doctor if your headaches change or get worse in any way. And then get working on it and start rebuilding your brain, circulation, detoxification, mitochondrial function and blood
I have been getting them since 2002 with them getting more and more frequent. One a year to twice a year to multiple times a week after having Lymes disease
nothing works ,they are inevitable in us with the disease.I really think your video is pointless as a H.M attack will happen no matter what.I run a group for people with H.M and most of us are permanently disabled from the disease.Its not just a migraine ,its more much more.The stroke like episode can cause permanent weakness to full on paralysis. I would prefer to hear an analysis on that.
I was wondering if there are any sites you recommend for reading up on these? As much as possible I like to understand what's happening but I feel like I've been reading the same few articles for the past 8 years 😅
I would first off recommend our articles but other than that the internet is very dry in terms of information for it. The best would be to get some functional medicine tests along with someone experienced in corrective manual therapies
@@MigraineProfessional thank you, luckily I'll be seeing the first doctor I've personally met that knows about these 😅 I'm hoping I can gain some more insight! Your article was very informative and easy to understand, thank you!
Legit had to get a chunk of My leg meat and a fair amount of blood too test what kind of problem I had. It’s not melas, it’s hemiplegic migraine … not a bad as melas but still.
I truly believe in a holistic approach to health and love what you are helping others understand. I've obviously neglected areas of my own health and fallen subject to familial hemiplegic migraines. A hypo recently triggered my last one. But my question is, if you have the genetic make up for familial hemiplegic migraines, is it that those of us that have them, have triggered the predisposition of our genes to go into a reaction state? Can we have the genes for FHM but never 'activate' them? (with good health?)
75% of our health over the age of 40 is about what has been done to our genes. I find that when individuals recover integrity inside their body systems they are much more resilient to triggers and flares. How many people out there live with genetic predispositions that never trigger them? The predispositions can range from minor snps in metabolism to huge multi systemic changes so it depends
I am a health care professional a licensed vocational nurse to be precise and I am taking in a home health case where I have a 30 y o partient who suffers from a rare form of migraine which results occasionally with hemiplegic migraine with secondary epilepsy. My question is in monitoring for these episodes what should I be looking for specifically?
I have FHM and experience seizures on occasions. My neurologist explained that HM is more akin to epilepsy and stroke than blood pressure related migraine conditions.
These run in my family. My sister cured hers by piercing the middle part of her ear weirdest thing ever. I soldier on, trying to avoid stress and patterned lights as much as possible.
With all the comments it finally feels good to know that I am not alone. Thank you so much for bringing this to light, I've been lost in pain for years. I hope we conquer this.
I have these. Absolutely terrified me the first time. I was 20 and thought I was having a stroke. They put it down as a TIA as I never had migraines before. I know it was this now though as I recognise the triggers.
Me too.
Same!!! Also was 20. I always had aura and pain. But then at 20 I thought I was having s stroke.
This was me at 30!
I have been having numbness and reduced motility in my right hand, swelling on my right arm, leg, and face too for 7 years now. I finally was given a diagnosis today and I had happy tears to be given a name. I had blood work and everything was normal except low vitamin B12. Now that makes sense! I had kept being told I was fine that there is nothing wrong with me. But I know I’m not crazy!!!
I've been dealing with hemiplegic migraines for 7yra as well. Just diagnosed in 2020. Do you have autoimmune disorders as well? I'm wondering if autoimmune disease could be causing neurological inflammation.
Yes autoimmune diseases: celiac, thyroid, exzema, virtiligo etc
This guy is on point currently having one right now
They are scary.
Currently on migraine status right now. Taking comic spray.
Maybe steroids tomorrow after migraine clinic specialist consult in the AM
My trigger: severe rain storm with thunder and lightning.
Correction. Taking zomig spray, a triptan. To abort.
My grandmother had it and I was born with this, I have pictures of me at 6mo old with facial pulling and first words were "head hurt" it has controlled my entire life, now I have had a daily attacks for the last year 365 days of facial pulling, shaking, losing verbal control all the symptoms. I am just ready to die😢
Any hypomobility?
Thank you so much. This helped me to understand my condition better, so that I can work on prevention.
I have had two since February. The first time I went to hospital with mini stroke symptoms. A scan was clear and they diagnosed hemiplegic. I had a second one the beginning of this month. They are scarey. The Doctor has referred me to TIA for more tests.
I hope they give you some answers and actions to start with
I have had the migraine headache for two months none stop having all the signs of a stroke and I was in the hospital for a week then they did say it was Hemiplegic migraine headache .
@@antoinettefoster7538 I feel so sorry for you having one for 2 weeks, thats awful. I hope you are feeling better and hopefully that was a one off.
@@rosebud8649 I must tell you that it had been like hell for me I couldn't see for about three weeks
@@rosebud8649 it was really bad
Thank you for making this video
I have this condition. I also have RLS . I went to hospital thought I was having a stroke. 5 years of this ! Now I have some idea of how to treat it.Thank you
I have Hemiplegic migraines and the biggest game changer has been a paediatric chiropractor! I’d love to talk to you about it. The connection to Hemiplegic migraines and your nervous system is crazy. I went from having 4 migraines a week to one every 6-8 weeks.
Please do share more! I have had at least one migraine a day since they started 20 days ago. It’s so exhausting and scary
Good to know
Chiropractic is pseudoscience.
Had these Migraines for over 18 years...thank you so much
I suffer from these as well they are very scary and the headache is aweful
Fucking spot on for the CO2, for lack of a better, more delicate word. Had my first hemiplegic migraine today the moment I did breathing exercises with breath hold. Thought it was a stroke and ended up in the ER !
I live in Melbourne, so RMH (royal Melbourne hospital) and they did a LOT of tests.
My triggers are cottage cheese, keffir, eating egg yolks two days in a row, or drinking two hot chocolates in one day instead of one. Or eating normal cheddar cheese for too or three days in a row. Also sleeping on the wrong side with the wrong sized pillow. And lastly Bergamot or Earl Grey tea.
Wow amazing you figured them out!
I have had these for 40 years. I have tried everything. The episodes still happen. The only thing that relieves pain is ice pack on the back of the neck. If I can get it in time. Usually lasts 1 to 2 days. This is very helpful. Thank you
Have you tried amivog (sp) its cut mine in half migraine injection self done once a month
And reyvow they have me on both and altimeter med.
Amitriptyline and Verapamil have worked for me.
Ice helps me also. And ice cream and popcycles to freeze trim in in so nerve.
Doctor shoots steroids into the trimiginal nerve also.
Amoivig it help helps also. Trip tans to abort.
I get hemiplegic migraines around every 4 months or so and they are terrifying especially since I am over 50. If I was having a stroke I wouldn't know it and I don't go to the ER as they tend to view you as a drug seeker so I just deal with it. I have tried EVERYTHING! now I just ice my head and wait it out. It takes about 3 days before I can use my left side normally
It's terrible that the drug seeker stigma has been attached to migraines. It's great that it is all reversible but so scary
How long have you had them, is life still worth livving. Personally my life sucks as it is but with migraines once month i feel like maybe life isnt worth all this pain. Going to go get an mri soon idk.
@@radnukespeoplesminds I hope you are still here & that it has gotten better for u
I average 15 attacks a month, some lasting days. Emgality has cut the severity but not the frequency. Took 10 years 12 Neurologist Before I was diagnosed. Many visits to the ER thinking i was suffering from a stroke.
I went 10 years without having on then bang out of no where it hit me its about a week after ive had the migraine and my eye sight still feels off is this normal
So well articulated thank you
Been getting these since 7th grade….I’m 21 now.
I just discovered that I’ve been having these for 10 years now. I don’t have them often, but when I do ( like a few days ago) it’s terrifying. Not sure who to see or what to do next.
see our article on them as well as our recent post on IG and FB on the iceberg of underlying causes as well as the story I uploaded yesterday
I started getting hm when I was in high school and had told my Dr for yrs and she never batted an eye at it! So many people over the yrs didn't believe me! I finally saw a nurologyst who finally diagnosed me after much testing! Anything can trigger it! Ya allot of help smh Medication don't work too prevent it! What I did was document what I ate how much sleep stresses weather excetera... I went from 2-5 a day to less than 10 a yr! I can usually tell when I am going to have an attack! I feel off sometimes kind of vacant I eat a high protein snack drink lots of water and take Tylenol! It sometimes keeps stroke like symptoms minimal to where it only get minimal symptoms or Skip a few symptoms sometimes migraine is minimal or not prolonged to where it's manageable! Stay strong it's not easy! Hope this helps!!! ❤️
I have been having them over ten years or more but it was just like one week or two weeks and then it's gone but this last time I got it I felt as if it was a stroke because I couldn't walk I had no feelings on my left side and I couldn't see for three weeks I was scared this last headache lasted for two months none stop I felt I was going crazy because I once forgot my handbag in a public place just couldn't remember anything
I just wish I knew how to stop it at the first sign before it get that bad where I am no longer in control of myself please help me
@@antoinettefoster7538 Make sure you see your doctor if your headaches change or get worse in any way. And then get working on it and start rebuilding your brain, circulation, detoxification, mitochondrial function and blood
I have been getting them since 2002 with them getting more and more frequent. One a year to twice a year to multiple times a week after having Lymes disease
Lymes is huge and often comes with many concomitant factors as well
Diagnosed a week ago. I had 4 episodes in 3 weeks. I'm afraid to go out or drive. Would it be a problem to have a normal life?
nothing works ,they are inevitable in us with the disease.I really think your video is pointless as a H.M attack will happen no matter what.I run a group for people with H.M and most of us are permanently disabled from the disease.Its not just a migraine ,its more much more.The stroke like episode can cause permanent weakness to full on paralysis. I would prefer to hear an analysis on that.
I was wondering if there are any sites you recommend for reading up on these? As much as possible I like to understand what's happening but I feel like I've been reading the same few articles for the past 8 years 😅
I would first off recommend our articles but other than that the internet is very dry in terms of information for it. The best would be to get some functional medicine tests along with someone experienced in corrective manual therapies
@@MigraineProfessional thank you, luckily I'll be seeing the first doctor I've personally met that knows about these 😅 I'm hoping I can gain some more insight! Your article was very informative and easy to understand, thank you!
@@aki3249 if u need help, I'm here
@@MigraineProfessional Thank you, I hope you'll do more videos/articles about these!
Legit had to get a chunk of My leg meat and a fair amount of blood too test what kind of problem I had. It’s not melas, it’s hemiplegic migraine … not a bad as melas but still.
I truly believe in a holistic approach to health and love what you are helping others understand. I've obviously neglected areas of my own health and fallen subject to familial hemiplegic migraines. A hypo recently triggered my last one. But my question is, if you have the genetic make up for familial hemiplegic migraines, is it that those of us that have them, have triggered the predisposition of our genes to go into a reaction state? Can we have the genes for FHM but never 'activate' them? (with good health?)
75% of our health over the age of 40 is about what has been done to our genes. I find that when individuals recover integrity inside their body systems they are much more resilient to triggers and flares. How many people out there live with genetic predispositions that never trigger them? The predispositions can range from minor snps in metabolism to huge multi systemic changes so it depends
I am a health care professional a licensed vocational nurse to be precise and I am taking in a home health case where I have a 30 y o partient who suffers from a rare form of migraine which results occasionally with hemiplegic migraine with secondary epilepsy. My question is in monitoring for these episodes what should I be looking for specifically?
I have FHM and experience seizures on occasions. My neurologist explained that HM is more akin to epilepsy and stroke than blood pressure related migraine conditions.
These run in my family. My sister cured hers by piercing the middle part of her ear weirdest thing ever. I soldier on, trying to avoid stress and patterned lights as much as possible.