Invisible disabilities are weird in that people often react with disbelief because you "look normal". People are surprised when i tell them that i don't know how to drive, and often insist that I'm "smart enough" to learn. But i have neurological issues that cause havoc with my perception, and cause temporary blindness and seizures. You "look normal" because your brain has learned how to compensate for the things that don't work right.
Long Covid here. Look normal but no one ever sees me any more because I've pretty much been in bed for 2yrs. Serious off and on brainfog. Thank God for family. My husband (may he RIP) had horrible migraines- ran in the family. Migraines are horrific.
I have been noticing that more people are realizing that migraines are not headaches; which is a relief. So hard to explain that just taking tylenol doesn't cut it and you can have a migraine with no headache. My migraines sometimes just consist of garbled speech, dizziness, extreme sleepiness, visual auras, confused thought, muscle weakness, and/or nausea. I've had them since I was 16 and typically have one to two a month for three days each; but sometimes they can go on and off (couple days miserable, a day or two ok) for weeks. However, that still was not enough for my insurance company to consider them chronic. That limits the type of treatments that they will allow. One of the worst things about migraines is how it robs you of time and experiences - missing out on things you planned, or afraid to plan things because you don't know when you will get one.
Thank you for telling us about this condition and your struggle with it. I have never heard you make a word mistake, your speech is really good (I used to teach special ed so that jumps right out for me, especially when I do it.). Thanks also for reminding us that people we come in contact with every day may have things to deal with that we have not idea is going on. Your story helps us all work on increasing our empathy.
Wow. Holy smokes. They really sound like a stroke. I am glad you found anything that could help. Living in pain is a nightmare. I am so sorry you have to deal with this AND parent AND work. My kids are young adults now. I spent nearly 4 years bedridden with fibro. I worked hard through that but it is not the same as you have. If you are getting actual nerve damage, that is a whole other thing. I am optimistic there will be better days ahead. I practice Reiki and, with consent, Im happy to send you some vibes! Thank you for sharing your humanity.
I always appreciate when folks share about their migraines.. a lot of people think it's "a really bad headache" but the symptoms can be so diverse. I have my own migraines (not nearly so hampering as yours), and only recently found a preventative and rescue(?) medicine combo that is helping reduce frequency and duration.
Thank you for promoting migraine awareness and sharing with everyone that it's Not Just Head Pain. I really appreciate the various types of advocacy you do...and this time you spoke specifically about something I also have, even though you have a much more complex type of migraine, while mine are more classic migraine (mine respond to zomig/zolmitriptan). Thank you for spreading the word!
As a fibromyalgia sufferer, I understand what it's like to 'look normal' and feel like absolute shite, while also trying to run a business. Sending you so much love and compassion and I applaud your bravery to speak about your illness. There is no shame, we didn't do anything wrong and by talking openly about it, we help others who've felt they had to hide what's really happening.
I used to get incapacitating migraines. What is interesting that I've had two cancers and after treatment, I no longer get migraines. I don't know what to attribute that to. Perhaps chemotherapy, surgeries and other medicines. Thank you for sharing that because a lot of health issues that people have are invisible.
I'm so sorry that you suffer with those types. I can empathize somewhat because I suffer from chronic migraines without aura. Emgality has been a lifesaver for me. There was a time when they weren't doing any migraine research and that went on for many years. It blows my mind because there are somewhere around 14 million migraine sufferers in the US. Hopefully, they will find better treatments in the future. Saludos desde Asturias.
I suspect that number is under what the real number is. Migraine sufferer since about 1990. When I read the description of Long Covid symptoms I checked every box with more symptoms to spare. I have given up trying to get help since none of my Dr.s have been any help at all. Most don't believe me I suspect.
Sooo happy there are some treatments that help. I’m impressed with your resilience, endurance and grit. Telling your story is a great help to your fellow humans who are facing challenges (all of us). As Scott Peck said, “ life is hard.”
I had migraines for about 40 years. They ended at menopause. Any headache now and i’m mostly pissed off about it. But, no more migraines and i am so, so thankful! I feel for you and hope they find even better meds in the future!❤
I also just got Botox a few days ago for my chronic migraines that I have had since I was a teenager. I am now in my late 50s. Mine also seems to be hereditary but luckily I don’t get the Get the hemiplegia. It’s good to hear someone else’s perspective on migraines because a lot of the time I feel like I’m the only one.
I've never had migraines fortunately but I have a friend that gets cluster headaches and they're absolutely debilitating. Anyone that thinks migraines are your average run-of-the-mill headache has never seen someone go through them. It's extra sad because unfortunately there's also a lot of doctors that think migraines are just headaches, especially if you're a woman. Because if there is a woman saying she's in pain she must be exaggerating, right? I'm really sorry you go through that.
I hadn't heard someone describe the "aura" as clearly as you did! Thanks for sharing, I never knew what to call it & have tried to tell people what it looks like to me, when it starts small & expands in my vision.. I feel lucky that I don't usually get the head pain, more so the flashing aura, feeling a bit off colour & light sensitive, especially during stressful times. I've been told I appear to have "silent migraines"..
Wow, what a horrible thing to live with! I'm so glad you've found some quality solutions to relieve your symptoms and pain. Thank you for sharing your experience. ❤🙏
OMG! You hide it so well! I never would have guessed that someone as intelligent and articulate as you are would have this kind of health challenge. You look really healthy too. So sorry you have to go through this.
Thanks for sharing. My daughter gets migraines. She had her first as an infant. Later, as a toddler, she was getting them so frequently I had to keep track of them and was trying to figure out triggers or any way to stop them. She was tested for seizures at the time. It was pretty intense. She would turn gray and be completely unresponsive and incapacitated. It really looked like a stroke. She has outgrown the worst of it. She had one a few years ago on the bus ride to school. She had to be removed with a wheelchair and she was unresponsive and sweating through her clothes. She needs complete quiet and darkness to recover. It usually takes 12-14 hours for her. It’s good to know Botox helps. And other drugs. Always on the lookout for new ways to cope.
Mine generally last for days so there is no real day after. Edit: I should have said when I was able to work It was exposure to certain solvents as best as I can tell and fragrance. So working in an office with co-workers who might sound sympathetic but, not enough to stop using scented products. So I never really got a break from the constant migraines until I would get fired for missing a day without a Dr's note. Some didn't even bother with a note and fired me anyway. It took a full year to recover one time. And then of course I went back to work and it started all over again, and again...
I’ve had intense complex daily migraine for 17 years, 24/7/365. I completely understand what you’re talking about. And you’re amazingly upbeat about what I know can be an ongoing trauma. Botox didn’t help me at all, but Emgality was life changing. Until I couldn’t afford it anymore despite insurance covering 70%. It’s crazy-making
As someone who also suffers from this with nearly exact symptoms, I appreciate you posting this. Also a botox patient with positive results. Thank you for bringing visibility to this debilitating disorder.
Thank you for speaking out about migraine headaches and their symptoms. It makes mine feel like a walk in the park. I have had very few since I had a change in medication. Nowadays, I just have to watch out for food triggers and intense weather symptoms that occasionally tip me over. Thanks again for your hard work.
I truly feel for you, migraines with aura are awful. Every single female in my family, and some of the males, all suffer with these. My word finding difficulties tend to result in words that sound similar but are totally unrelated, causing huge confusion all around. My numbness also alternates, eg, first one hand then the other, tongue then lips, one side of my face then the other. If you're out and get that eye symptom, which is like getting a sudden flash if sunlight off of a car door, you know you are stuck until the aura goes and you are cognitively able to operate a car, which can be hours! While trying not to throw up. As a child, i had around five a week, but thankfully reduced as i got older. I'm so glad you found a way to lessen these affects dramatically, they are debilitating. Much love x
Thank you for sharing this and for educating about the realities of life with migraine. I have chronic migraine, and it takes an unbelievable toll, and so often people rush to dismiss the suffering or blame it on lifestyle factors. I especially appreciate the mention of lingering neurological symptoms. So frustrating to deal with, especially in terms of capitalism and "being productive". I hope the Botox continues to work and insurance doesn't increase your stress level (all migraine sufferers know that one, unfortunately).
Thanks for sharing about invisible disabilities. I have cognitive impairment and many other debilitating symptoms from having had untreated tick born illnesses for nearly two decades. The neurological symptoms can be embarrassing when i am trying to communicate with others. I also can no longer work as the result of all of this. It can be lonely, its helpful when people share openly about theirs. Thank you.
TMI but I have hypermobile ehlers danlos syndrome and injured myself badly in 2010. I have headaches daily but they're mostly relieved lying down. I don't think they're technically migraines??? But I relate to people who suffer from migraines. It's interesting you mentioned caffeine bc I'm a caffeine addict. But the sx are so bizarre. If it's bad enough my tongue will feel numb, stomach pain just all over. Id LOVE to get Botox at the base of my head. I probably wouldn't qualify but it's great you're letting people know you're a success story.
Over 80% of people with disabilities have INVISIBLE disabilities. But most think that disabilities are ONLY mobility related; ie wheelchairs, canes, etc must be seen to believe someone is disabled. Multiple Chemical Sensitivities are one of these. Completely invisible but affects multiple major aspects of one’s life. Which is the ADA definition of a disability!
Thank you for sharing! My mom had debilitating migraines. No medicine conquered it. She felt like she had a rubber band tight around her head. All the time. All her life. She also had brain fog. She developed dystonia in her neck which pulled her head forward, her jaw tight against her chest. Dystonia (torticolis) is caused by excessive nerve stimulation of muscles. She had Botox injections into the effected muscles every 12 weeks. What a life saving treatment! Even though improvement takes a couple weeks and it gets worse towards the end of 3 months, this saved her. Dystonia was the least serious of her medical conditions, but it was the most discouraging one because you are constantly aware of it. Without Botox treatment, she had to hold her fist under her chin to push her head up so she could eat, drink, read, etc. she had difficulty swallowing. It wears you down. What you are enduring is exhausting. I admire your strength. Be gentle on yourself. 🥰
I have HedS, Hyper mobility Ehlers Danlos. Mine comes with headaches, IBS-C, fibromyalgia, neuropathy issues and a nausea that has persisted since 1989. I feel for what you’re going through. Nobody believes we hurt like we do or that anything is wrong with us.
I had migraines they started in my 30dys and ended after menopause. You have my sympathy, migraines are awful and yours sound even more challenging. I learned that if I crawled into bed and kept my head elevated , I would breath quickly in and out until I passed out. It would stop the migraine and I wouldn't have the migraine hangover that normally occurred. I know I did not have the same type of migraine as you but it might be worth a try.
I feel for you. I am grateful my chronic migraines have never had the same neurological issues, that I'm aware of. That may explain why some people act like they didn't hear what I said to them or they heard something other than what I thought I had said. On the other hand you seem to have found medical professionals who could diagnose what you have. Me not so much. Been suffering this since about 1990 or so. Stay well and thanks for sharing.
I have multiple Myeloma and Stage 3b Kidney Failure. I look healthy but I have back pain and bone pain. I can't take anything but Aspirin for pain relief (because of my kidneys).
Thank you so much for sharing! I have complex chronic migraines and I've always said the same thing as you -- the neurological symptoms are even worse than the pain. After failing every medication for the past 20+ years, I finally got Nurtec this past summer and it has really helped. It's not perfect, but at least it does something and doesn't cause awful side effects for me!
i love this channel so much and I'm shook to understand i'm following a secondary channel from this outstanding creator that's nonetheless putting up huge quantities of incredibly thoughtful and valuable content. To the point of the video, I really appreciate the truthsomeness on invisible illness. i have several unfortunately, and used to get typical migraines - also to the extent that i wasn't always sure where one migraine ended and another began. Glad the botox helps with some of the symptoms. My migraines are a different sort, and got significantly better when I discovered and eliminated some food triggers.
That sounds awful! My mom lived with migraines. She taught special ed. Don't know how she made it. I have polymyalgia rheumatica which is terribly painful and seems untreatable. I was on steroids for a year which is the only tx but didnt really help. Just gave me glaucoma and diabetes. I've given up trying to get relief from the pain. Im so glad you found something that can help.
that sounds horrible. glad you have been able to mitigate it, somewhat. i always wonder how many of these issues would be completely curable if the 'world hegemon' didn't profit from "treatment."
Oh man. I call it brain scramble when I use incorrect words. My family is used to it. I think my kids are super good at context clues because of it. I’m taking ajovy shots monthly. They have been life changing.
Those were the kind of migraines I started to experience after I gave birth to my kiddo 8yrs ago. It's scary. I never experienced them so frequently, though. What you described sounds awful and I'm truly sorry that it's found its way into your life. Funny thing is, when I was 32 I was diagnosed with heart failure (from chemo years ago) and that caused some clots to form in my heart. So I had a PE and then a stroke about a week after that. When I experienced the stroke, it was like I was dealing with a migraine but the inability to control my left arm was gone. It would rise and fall all on its own while sitting in the ER room. My head and neck would also swing back and to the side on their own. During my cranial MRI, I got super super nauseous and barely made it out of the tube before puking. And just like with migraines, once I puked, most of the symptoms were gone. The stroke occurred in my cerebellum, which makes sense why I couldn't control my arm and neck while in the ER. Thankfully, I escaped with little-to-no neurological deficits. It was a very strange thing to sit within myself and observe while it was happening. I'm glad to hear that you have some proactive steps that help your quality of life. My daughter was 2 1/2 when this health crisis hit and it was devastating not being able to be a fully active and available parent.
I may not agree with you on everything but I am glad your sharing your real authentic self. I find you very interesting and articulate as a neurodivergent person😊 I honestly feel you have a good sense of humor. I don't stand for either party and would probably be more of a libertarian but again my brain is wired differently. I believe in the Hebrew Messiah not the Christian one. I hope that you're healed of your infirmary and find comfort. That would be difficult to live with. I have psoriatic arthritis myself. Bless you in your health and well being❤
I used to get migraines a lot (like, I recognize the not being sure when one starts and one ends, and the auras, tho I called them prisms, because that's kind of what it looked like) but nowhere near as bad as yours. Fortunately they stopped at menopause. Hope yours do to!
This is NOT eat clean will cure your issue, there has been credible research that daily ginger dosing can help reduce migraines, might be worth checking out since the less you need the rescue meds the better they work, diminishing returns and all that. Also thank you for talking about the just cause the pains gone doesn't mean the migraine is! Finally guilted my insurance to cover the 3k a month med when I nearly ODed on the rescue med I was on, a string of viral illnesses earlier this year turned my twice a year 2 day long migraines into 2 strait months of migraine roller coastering. The weird thing is the new med is keeping the pain at bay, for which I am eternally grateful, but it still feels like someone turned up the volume of my vision and hearing still squinting inside and wearing ear plugs, it's the strangest sensation, like I'm constantly being threatened by my own head!
A friend said to me that not everyone has had a migraine and doesn't understand what migraines are like. ¡WHAT! I'm so sorry about your migraines. My SIL and nephews have the same type of migraines as you.
1:35 Had a stroke here. Yes, years later if I'm having to confirm something over the phone I will hear a number, write it down slowly, read it back to them because at any point i could have heard the wrong number, wrote the wrong number, or confrimed the wrong number. P.S. Anyone talk you about being on blood thinners? Xarelto seemed like a nothing burger when i was on it. Cumidin fucks with a lot of stuff but I haven't had another stroke in years.
Invisible disabilities are weird in that people often react with disbelief because you "look normal". People are surprised when i tell them that i don't know how to drive, and often insist that I'm "smart enough" to learn. But i have neurological issues that cause havoc with my perception, and cause temporary blindness and seizures. You "look normal" because your brain has learned how to compensate for the things that don't work right.
Long Covid here. Look normal but no one ever sees me any more because I've pretty much been in bed for 2yrs. Serious off and on brainfog. Thank God for family. My husband (may he RIP) had horrible migraines- ran in the family. Migraines are horrific.
I have been noticing that more people are realizing that migraines are not headaches; which is a relief. So hard to explain that just taking tylenol doesn't cut it and you can have a migraine with no headache. My migraines sometimes just consist of garbled speech, dizziness, extreme sleepiness, visual auras, confused thought, muscle weakness, and/or nausea. I've had them since I was 16 and typically have one to two a month for three days each; but sometimes they can go on and off (couple days miserable, a day or two ok) for weeks. However, that still was not enough for my insurance company to consider them chronic. That limits the type of treatments that they will allow. One of the worst things about migraines is how it robs you of time and experiences - missing out on things you planned, or afraid to plan things because you don't know when you will get one.
Thank you for telling us about this condition and your struggle with it. I have never heard you make a word mistake, your speech is really good (I used to teach special ed so that jumps right out for me, especially when I do it.). Thanks also for reminding us that people we come in contact with every day may have things to deal with that we have not idea is going on. Your story helps us all work on increasing our empathy.
Wow. Holy smokes. They really sound like a stroke. I am glad you found anything that could help. Living in pain is a nightmare. I am so sorry you have to deal with this AND parent AND work. My kids are young adults now. I spent nearly 4 years bedridden with fibro. I worked hard through that but it is not the same as you have. If you are getting actual nerve damage, that is a whole other thing. I am optimistic there will be better days ahead. I practice Reiki and, with consent, Im happy to send you some vibes! Thank you for sharing your humanity.
I always appreciate when folks share about their migraines.. a lot of people think it's "a really bad headache" but the symptoms can be so diverse.
I have my own migraines (not nearly so hampering as yours), and only recently found a preventative and rescue(?) medicine combo that is helping reduce frequency and duration.
Thank you for promoting migraine awareness and sharing with everyone that it's Not Just Head Pain. I really appreciate the various types of advocacy you do...and this time you spoke specifically about something I also have, even though you have a much more complex type of migraine, while mine are more classic migraine (mine respond to zomig/zolmitriptan). Thank you for spreading the word!
As a fibromyalgia sufferer, I understand what it's like to 'look normal' and feel like absolute shite, while also trying to run a business. Sending you so much love and compassion and I applaud your bravery to speak about your illness. There is no shame, we didn't do anything wrong and by talking openly about it, we help others who've felt they had to hide what's really happening.
I know someone with that, it's terrible when you have something so debilitating and people don't believe you because they can't see it. ❤
@ thank you for your compassion and understanding🦋
I used to get incapacitating migraines. What is interesting that I've had two cancers and after treatment, I no longer get migraines. I don't know what to attribute that to. Perhaps chemotherapy, surgeries and other medicines. Thank you for sharing that because a lot of health issues that people have are invisible.
I'm so sorry that you suffer with those types. I can empathize somewhat because I suffer from chronic migraines without aura. Emgality has been a lifesaver for me. There was a time when they weren't doing any migraine research and that went on for many years. It blows my mind because there are somewhere around 14 million migraine sufferers in the US. Hopefully, they will find better treatments in the future. Saludos desde Asturias.
I suspect that number is under what the real number is. Migraine sufferer since about 1990. When I read the description of Long Covid symptoms I checked every box with more symptoms to spare. I have given up trying to get help since none of my Dr.s have been any help at all. Most don't believe me I suspect.
Sooo happy there are some treatments that help. I’m impressed with your resilience, endurance and grit. Telling your story is a great help to your fellow humans who are facing challenges (all of us). As Scott Peck said, “ life is hard.”
I had migraines for about 40 years. They ended at menopause. Any headache now and i’m mostly pissed off about it. But, no more migraines and i am so, so thankful! I feel for you and hope they find even better meds in the future!❤
I also just got Botox a few days ago for my chronic migraines that I have had since I was a teenager. I am now in my late 50s. Mine also seems to be hereditary but luckily I don’t get the Get the hemiplegia. It’s good to hear someone else’s perspective on migraines because a lot of the time I feel like I’m the only one.
I've never had migraines fortunately but I have a friend that gets cluster headaches and they're absolutely debilitating. Anyone that thinks migraines are your average run-of-the-mill headache has never seen someone go through them. It's extra sad because unfortunately there's also a lot of doctors that think migraines are just headaches, especially if you're a woman. Because if there is a woman saying she's in pain she must be exaggerating, right? I'm really sorry you go through that.
I hadn't heard someone describe the "aura" as clearly as you did! Thanks for sharing, I never knew what to call it & have tried to tell people what it looks like to me, when it starts small & expands in my vision.. I feel lucky that I don't usually get the head pain, more so the flashing aura, feeling a bit off colour & light sensitive, especially during stressful times. I've been told I appear to have "silent migraines"..
Wow, what a horrible thing to live with! I'm so glad you've found some quality solutions to relieve your symptoms and pain.
Thank you for sharing your experience.
❤🙏
OMG! You hide it so well! I never would have guessed that someone as intelligent and articulate as you are would have this kind of health challenge. You look really healthy too. So sorry you have to go through this.
Thanks for sharing. My daughter gets migraines. She had her first as an infant. Later, as a toddler, she was getting them so frequently I had to keep track of them and was trying to figure out triggers or any way to stop them. She was tested for seizures at the time. It was pretty intense. She would turn gray and be completely unresponsive and incapacitated. It really looked like a stroke. She has outgrown the worst of it. She had one a few years ago on the bus ride to school. She had to be removed with a wheelchair and she was unresponsive and sweating through her clothes. She needs complete quiet and darkness to recover. It usually takes 12-14 hours for her. It’s good to know Botox helps. And other drugs. Always on the lookout for new ways to cope.
"I try to keep my stress level low." HOW 😂
A video on this would be appreciated 😅
@reading1713 Ditto
I often tell people that the day after a migraine is basically the day after a head injury. Sometimes the after is worse than the during. :(
I always call it a migraine hangover
@ I do that a lot too
Mine generally last for days so there is no real day after. Edit: I should have said when I was able to work It was exposure to certain solvents as best as I can tell and fragrance. So working in an office with co-workers who might sound sympathetic but, not enough to stop using scented products. So I never really got a break from the constant migraines until I would get fired for missing a day without a Dr's note. Some didn't even bother with a note and fired me anyway. It took a full year to recover one time. And then of course I went back to work and it started all over again, and again...
I’ve had intense complex daily migraine for 17 years, 24/7/365. I completely understand what you’re talking about. And you’re amazingly upbeat about what I know can be an ongoing trauma. Botox didn’t help me at all, but Emgality was life changing. Until I couldn’t afford it anymore despite insurance covering 70%. It’s crazy-making
As someone who also suffers from this with nearly exact symptoms, I appreciate you posting this. Also a botox patient with positive results. Thank you for bringing visibility to this debilitating disorder.
Also out of curiosity do you mind sharing which neurologist you see? Also in Portland.
Broken glass is such a GREAT description. I have only had a few migraines…regular migraines…in my life and worst pain ever.
Thank you for speaking out about migraine headaches and their symptoms. It makes mine feel like a walk in the park. I have had very few since I had a change in medication. Nowadays, I just have to watch out for food triggers and intense weather symptoms that occasionally tip me over. Thanks again for your hard work.
I always learn something new from you. I did not know this about migraines. I know that people suffer from them so thanks for sharing your story.
I truly feel for you, migraines with aura are awful. Every single female in my family, and some of the males, all suffer with these. My word finding difficulties tend to result in words that sound similar but are totally unrelated, causing huge confusion all around. My numbness also alternates, eg, first one hand then the other, tongue then lips, one side of my face then the other. If you're out and get that eye symptom, which is like getting a sudden flash if sunlight off of a car door, you know you are stuck until the aura goes and you are cognitively able to operate a car, which can be hours! While trying not to throw up. As a child, i had around five a week, but thankfully reduced as i got older. I'm so glad you found a way to lessen these affects dramatically, they are debilitating. Much love x
Thank you for sharing this and for educating about the realities of life with migraine. I have chronic migraine, and it takes an unbelievable toll, and so often people rush to dismiss the suffering or blame it on lifestyle factors. I especially appreciate the mention of lingering neurological symptoms. So frustrating to deal with, especially in terms of capitalism and "being productive". I hope the Botox continues to work and insurance doesn't increase your stress level (all migraine sufferers know that one, unfortunately).
My left eye is my trigger eye but I'm not having this. My friend had this and passed from it. I'm so glad you found a treatment!
Thanks for sharing about invisible disabilities. I have cognitive impairment and many other debilitating symptoms from having had untreated tick born illnesses for nearly two decades. The neurological symptoms can be embarrassing when i am trying to communicate with others. I also can no longer work as the result of all of this. It can be lonely, its helpful when people share openly about theirs. Thank you.
My ❤ goes out to you. I have occipital neuralgia and it just shuts me down 4-5 times daily but I really think what you have sounds so much worse.
TMI but I have hypermobile ehlers danlos syndrome and injured myself badly in 2010. I have headaches daily but they're mostly relieved lying down. I don't think they're technically migraines??? But I relate to people who suffer from migraines. It's interesting you mentioned caffeine bc I'm a caffeine addict. But the sx are so bizarre. If it's bad enough my tongue will feel numb, stomach pain just all over. Id LOVE to get Botox at the base of my head. I probably wouldn't qualify but it's great you're letting people know you're a success story.
Ps not asking for dx, been to 99999999 neuros for over a decade. It's just very relatable to me. I had to fly 2 days ago and today I'm paying for it
Your marching on through this is impressive to me. I'm glad you can persist, I really enjoy your videos. You are in my thoughts.
Over 80% of people with disabilities have INVISIBLE disabilities. But most think that disabilities are ONLY mobility related; ie wheelchairs, canes, etc must be seen to believe someone is disabled. Multiple Chemical Sensitivities are one of these. Completely invisible but affects multiple major aspects of one’s life. Which is the ADA definition of a disability!
Thank you for sharing! My mom had debilitating migraines. No medicine conquered it. She felt like she had a rubber band tight around her head. All the time. All her life. She also had brain fog. She developed dystonia in her neck which pulled her head forward, her jaw tight against her chest. Dystonia (torticolis) is caused by excessive nerve stimulation of muscles. She had Botox injections into the effected muscles every 12 weeks. What a life saving treatment! Even though improvement takes a couple weeks and it gets worse towards the end of 3 months, this saved her. Dystonia was the least serious of her medical conditions, but it was the most discouraging one because you are constantly aware of it. Without Botox treatment, she had to hold her fist under her chin to push her head up so she could eat, drink, read, etc. she had difficulty swallowing. It wears you down. What you are enduring is exhausting. I admire your strength. Be gentle on yourself. 🥰
I have HedS, Hyper mobility Ehlers Danlos. Mine comes with headaches, IBS-C, fibromyalgia, neuropathy issues and a nausea that has persisted since 1989. I feel for what you’re going through. Nobody believes we hurt like we do or that anything is wrong with us.
I had migraines they started in my 30dys and ended after menopause. You have my sympathy, migraines are awful and yours sound even more challenging. I learned that if I crawled into bed and kept my head elevated , I would breath quickly in and out until I passed out. It would stop the migraine and I wouldn't have the migraine hangover that normally occurred. I know I did not have the same type of migraine as you but it might be worth a try.
I beleive that we ALL have disbilities or limitations. Some are readily visble, others are not. So we should extend grace to all.
I feel for you. I am grateful my chronic migraines have never had the same neurological issues, that I'm aware of. That may explain why some people act like they didn't hear what I said to them or they heard something other than what I thought I had said. On the other hand you seem to have found medical professionals who could diagnose what you have. Me not so much. Been suffering this since about 1990 or so. Stay well and thanks for sharing.
I have multiple Myeloma and Stage 3b Kidney Failure.
I look healthy but I have back pain and bone pain.
I can't take anything but Aspirin for pain relief (because of my kidneys).
Thank you so much for sharing! I have complex chronic migraines and I've always said the same thing as you -- the neurological symptoms are even worse than the pain. After failing every medication for the past 20+ years, I finally got Nurtec this past summer and it has really helped. It's not perfect, but at least it does something and doesn't cause awful side effects for me!
i love this channel so much and I'm shook to understand i'm following a secondary channel from this outstanding creator that's nonetheless putting up huge quantities of incredibly thoughtful and valuable content.
To the point of the video, I really appreciate the truthsomeness on invisible illness. i have several unfortunately, and used to get typical migraines - also to the extent that i wasn't always sure where one migraine ended and another began. Glad the botox helps with some of the symptoms. My migraines are a different sort, and got significantly better when I discovered and eliminated some food triggers.
That sounds awful! My mom lived with migraines. She taught special ed. Don't know how she made it. I have polymyalgia rheumatica which is terribly painful and seems untreatable. I was on steroids for a year which is the only tx but didnt really help. Just gave me glaucoma and diabetes. I've given up trying to get relief from the pain. Im so glad you found something that can help.
that sounds horrible. glad you have been able to mitigate it, somewhat.
i always wonder how many of these issues would be completely curable if the 'world hegemon' didn't profit from "treatment."
Oh man. I call it brain scramble when I use incorrect words. My family is used to it. I think my kids are super good at context clues because of it. I’m taking ajovy shots monthly. They have been life changing.
I have a "hidden" illness that DOES flare up from time to time. I suffer from undiagnosed Lyme Disease. Which WAS related.
Those were the kind of migraines I started to experience after I gave birth to my kiddo 8yrs ago. It's scary. I never experienced them so frequently, though. What you described sounds awful and I'm truly sorry that it's found its way into your life.
Funny thing is, when I was 32 I was diagnosed with heart failure (from chemo years ago) and that caused some clots to form in my heart. So I had a PE and then a stroke about a week after that. When I experienced the stroke, it was like I was dealing with a migraine but the inability to control my left arm was gone. It would rise and fall all on its own while sitting in the ER room. My head and neck would also swing back and to the side on their own. During my cranial MRI, I got super super nauseous and barely made it out of the tube before puking. And just like with migraines, once I puked, most of the symptoms were gone. The stroke occurred in my cerebellum, which makes sense why I couldn't control my arm and neck while in the ER. Thankfully, I escaped with little-to-no neurological deficits. It was a very strange thing to sit within myself and observe while it was happening. I'm glad to hear that you have some proactive steps that help your quality of life. My daughter was 2 1/2 when this health crisis hit and it was devastating not being able to be a fully active and available parent.
I may not agree with you on everything but I am glad your sharing your real authentic self. I find you very interesting and articulate as a neurodivergent person😊 I honestly feel you have a good sense of humor. I don't stand for either party and would probably be more of a libertarian but again my brain is wired differently. I believe in the Hebrew Messiah not the Christian one. I hope that you're healed of your infirmary and find comfort. That would be difficult to live with. I have psoriatic arthritis myself. Bless you in your health and well being❤
Wow, I’m glad the Botox helps you😊
I used to get migraines a lot (like, I recognize the not being sure when one starts and one ends, and the auras, tho I called them prisms, because that's kind of what it looked like) but nowhere near as bad as yours.
Fortunately they stopped at menopause. Hope yours do to!
Thank you for sharing this. I have no experience with migraines.
Thanks for sharing. I love your content.
This is NOT eat clean will cure your issue, there has been credible research that daily ginger dosing can help reduce migraines, might be worth checking out since the less you need the rescue meds the better they work, diminishing returns and all that. Also thank you for talking about the just cause the pains gone doesn't mean the migraine is! Finally guilted my insurance to cover the 3k a month med when I nearly ODed on the rescue med I was on, a string of viral illnesses earlier this year turned my twice a year 2 day long migraines into 2 strait months of migraine roller coastering. The weird thing is the new med is keeping the pain at bay, for which I am eternally grateful, but it still feels like someone turned up the volume of my vision and hearing still squinting inside and wearing ear plugs, it's the strangest sensation, like I'm constantly being threatened by my own head!
A friend said to me that not everyone has had a migraine and doesn't understand what migraines are like. ¡WHAT!
I'm so sorry about your migraines. My SIL and nephews have the same type of migraines as you.
8-15 a MONTH?! 😳
Yikes, that's terrifying.
& Mimicking a stroke is the WORST. 😡
I have a seizure disorder.
Your description sounds like it could be related.
Wonder if anti- seizure meds would help.
I get migraines, but not that bad! If I keep my magnesium levels up, they are tiny.. I am so sorry.. that must be terrifying to deal with.
I found a food alergy was triggering my migraines, cutting that one thing out of my diet cleared up my migraines.
The American dream is becoming The American joke!
The joke is on us!
1:35 Had a stroke here. Yes, years later if I'm having to confirm something over the phone I will hear a number, write it down slowly, read it back to them because at any point i could have heard the wrong number, wrote the wrong number, or confrimed the wrong number.
P.S. Anyone talk you about being on blood thinners? Xarelto seemed like a nothing burger when i was on it.
Cumidin fucks with a lot of stuff but I haven't had another stroke in years.
😢 💙
🎄
That sounds miserable, so I'm keeping my fingers crossed that your treatment regime keeps on helping with your migraines.
wow. Thats quite a lot.
You need to take care of yourself!
might want to try dong quai root 🙂
🥰💥❤💥❤💥❤💥🥰
Zzzzzzz
🫂🙏❤️
ruclips.net/video/MXJjN7N9Q4U/видео.html
Try eating nothing but sweet potatoes, water, and b12 supplements for six months. Just a thought.