Living with Familial Hemiplegic Migraine with Paralysis | Webinar | Ambry Genetics
Вставка
- Опубліковано 25 сер 2019
- For more information about genetic testing, visit www.ambrygen.com/
Living with Familial Hemiplegic Migraine with Paralysis: The Patient's Experience with Kirsten Blanco
Familial hemiplegic migraine (FHM) is a rare, poorly understood form of migraine with aura that can often mimic stroke, epilepsy, and other neurological conditions. In addition to the migraine head pain, other severe symptoms can include hemiplegia (unilateral motor weakness), impaired consciousness, and ataxia, which can be frightening for both the individuals suffering from and witnessing the episodes. This talk will not only provide background and discuss what is currently understood regarding the genetics and pathophysiology of FHM, but also describe the physical and personal challenges of living with such a condition and how proper treatment and lifestyle changes can make a difference in overcoming obstacles and living a healthier life.
Presented by:
Kirsten Blanco
Zöe Powis, MS, CGC - Наука та технологія
Thank you so much for sharing this! I am a sufferer too and it’s so good to have it explained properly like this. Also to know I’m not on my own with this xx
This is life changing information! I’ve dealt with this type of migraine for over 40 years. My family decided that I was demon possessed, and doctors convinced my x-husband that it was a mental disorder. I can’t believe, I’ve found the answer. I’m absolutely socked by this information, thank you so much for sharing.
My story is pretty much the same. I only got answers when I got a genetic test and was positive for the ATP1a2 mutation
My daughter just got diagnosed with this. She is scared beyond belief of the symptoms and freaking out right now. I’m concerned for her and researching as much of this as I can to find a way to ease her suffering dealing with this illness. My mom had it but we never knew this was what it was the whole time until my daughter started having really bad occurrences of it recently as she was diagnosed. I have 3 children and so far one which is my oldest child and daughter is now battling this illness in her early 30’s. My mom had it in her 40’s. Don’t know if my 2 young sons will have it or not. I’m just beside myself right now on what the future holds for them all. Thank God there is more research on this now then there was over20 years go when my mother had it. Hopefully it can help my daughter fight this illness now. It breaks my heart to see my healthy child break down with such a serious illness like this out of no where while she was attending college to be a chef. Her whole world came crashing down. And momma can’t do nothing about it to help her. So sad inside but we gonna keep doing our research and keep looking for ways to help her cope with it and see if we can find some treatments to help her manage it now. Thank you for the video, I’m going to pass it on to her!! God bless you and yours.
I have had these since puberty and I’m now 26. My brother is 21 and just starting to get them. They are hard on me and my brain. I had to quit sports and band because of the damage it caused to my memory and reflexes. They are less frequent now and for my mom, they went away by 30 years old.
I was diagnosed by a headache/migraine Neurologist with having Hemiplegic migraine 2 years ago after having to attend the ED of a hospital a couple of times for what they thought was a Stroke or a T.I.A. Just last year alone I was hospitalized up to 7 times with HM attacks where at one time I was paralysed from the waist down so was unable to walk and had limited sensory abilities. I am currently being treated with Sodium Valproate which has been helping me manage the symptoms and the attacks have decreased from 12 or more a month down to 2,the effects of HM have been extremely debilitating and have led me to have CPR due to me stopping breathing twice last year. Thank you for making this awareness video as I feel it will help so many who are also battling this horrible neurological disease. I do know that mine are related to the prrt2 Hemiplegic migraine attacks as I have the 16p11.2 chromosome duplication confirmed by a genetics counsellor.
I have to have a low glutamate diet and high gaba. Magnesium, salt, L-thenonine, L-arginine, Taurine, ginger power Turmeric all help me.
My son just started having these out of the blue in march 2021 and received his cfhm diagnosis feb 23, 2021. Hearing you speak it’s like watching him when it happens. The first two were 6 months apart and the er doctors attributed them to panic attacks when he was in completely calm situations both times. He now is having some cardiac issues and he’s hoping the newly prescribed topiramate will help him to the point he can play high school basketball and drive.
I have FHM. Happy if you connect with me. I'm in multiple Facebook groups for SHM and FHM.
The inherited cerebral small vessel disease CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) should be considered as well, especially if these FHMs persist into early adolescence or do not even begin until young adulthood. Migraines (with or without aura) are a significant symptom (often the presenting symptom) of many people with CADASIL.
I had regular FHMs for about 23 years, lasting from a couple of days to a couple of weeks. Left-sided parasthesia (partial or complete) were a feature of almost all of them. I've had all the symptoms you described, at some time or another, and not necessarily together. Seven years after my migraines began, I was diagnosed with CADASIL (my mother had been diagnosed six years before me).
Thanks for sharing your lived experience - it provides important insights to others with FHM and, perhaps more importantly, for their relatives and friends who don't understand the condition, some of whom may be dismissive and play down its impact on our lives.
And I love the mosquito versus shark comparison!
End of may I went to the ER with stroke symptoms ever since I’d have stretches I’d get better then barely can walk. In that time I’d have a migraine a week. Was diagnosed with this today
this only needs TRPV1 and central sentatization, and it would become a top presentation about migraine
Ive had hemiplegic migraines all my life, my first one at just 5 or 6 years old. Nobody in my family has these so its not familial for me. I get the aura lights first, everything gets extremely loud, i lose feeling and use in half of my body from my head to my toes, even down my throat and tongue. After this i have trouble speaking words, one time i couldnt speak at all like a baby, no words would even come to my mind and it took me 3 days to speak somewhat normally. I would also get extreme vomiting and heaving and the pain, unbelievable pain sets in. When i was a teen i would end up in the hospital with multiples, all the symptoms washing over my body in waves, up to 8 in a single day and every cycle the headache would get worse. My whole body would be numb and i would have to leave my body almost in order to survive these episodes. I was always given oxygen which stops the multiples, a strong nsaid injection, morphine, anti vomiting and iv fluids. The older i get the less i have them. I also happen to be allergic to triptans, i have a HORRIBLE reaction to those drugs. Anti depressants and beta blockers didnt work for me either, mine are related to my hormone swings, but people with this rare type of migraine should NEVER take birth control, its too dangerous for us to have estrogen or progesterone and can actually make your migraines much worse, our risk for stroke is high.
hi can i ask do you work or as it affected you a lot i cannot work at moment getting them really bad
Oh my word! really strong cannabis oil is helping my son immensely with his migraines. I only just heard of these type this morning but it makes the most sense of any thing any doctor has suggested is the problem thus far 5 years in. I also have these migraines and have had a few strokes they think. This oil has changed our lives! I bless you and will pray for your healing
I have a Text-To-Speech app on my phone for when I cannot speak. I have the ATP1a2 mutation, and the position of the mutation is undocumented (not the typical position). I also have DEE and myoclonic epilepsy
I am 26 (M) and I have been having HM since I was 13-14; however, only now I am finding its full name. It took me 3 years of frequent visits to many neurology doctors to find out that I have a migraine with aura - at least it was towards the right direction as it didn't explain the rest of the symptoms. My HM would normally start with the fingertips of my right hand and then slowly reach my face, lips, tongue, cheek, eye (once I have seen black and white because of this) before I get a headache. At the worst, I used to have a HM episode once every two weeks and each would last from 5 to 45 mins or so. The headache would completely disappear after 2-3 days, but it would become manageable after a good night's sleep. I have changed my lifestyle to eat certain foods (mostly I avoid anything that has added sugar for personal health benefits, i.e. not to treat the HM) and try and get to sleep enough everyday. I now have 3-5 episodes per year, but I still don't know the trigger(s). I believe stress is #1 and sleep deprivation is #2. Nobody in my family has any migraines.
Did you experience paralysis on the half of your body or any visual problems?
I experienced weakness half of my body feels like going paralize 😪
I am a 29 year old male. Tuesday my fiancée rushed me to the emergency room with full stroke symptoms. Numb from my forehead to my toes and struggling to speak. All tests are good, discharged Thursday with a diagnosis of a complex migraine. Today is Saturday, I still have light numbness on my left side (nowhere near Tuesday) and a splitting migraine ONLY on the left side of my head. I would love if you could contact me and maybe aid in my diagnosis planning.
Last year I experienced something similar to this but I had seizures, not stroke symptoms. Again - complex migraine.
Something in my late teens I experienced stroke like symptoms and was temporarily paralyzed on my left side. Got up off the couch, walked 15 feet and made it up about 5 stairs and I froze. Hit me like the flip of a switch.
Hospital visits and repetitive testing kind of hurts the whole “make a life for yourself” plan lol. Any help is greatly appreciated
WOOOW I'm just learning about this for the first time while researching to help my 24 year old son. I think he is beginning to have some similar symptoms :( Will pray for your healing!
I have HM but I was diagnosed with a functional disorder at first.
Thanks for creating this video - I really appreciate it.
Thank you for sharing! I have HM and it took me 3 years to achieve a diagnosis. It would be good to connect!
Do you know any treatment for this?
I have been suffering with HM too.😖😞😞 such a terrible experience.
Mine always start with visual disturbance, then the numbness of body part followed by an excruciating headache.
Hi guys do you know any online forum or community group for people with hemiplegic migraine?
So if my paralysis doesnt improve even after several weeks does it mean its permanently damaged?
You live in constant fear