MY CHRONIC MIGRAINE STORY // Symptom Onset, Migraine Tests, and Diagnosis
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- Опубликовано: 15 сен 2024
- Real migraine patient, real migraine story, migraine tests, and diagnosis! In this video, I share my migraine symptom onset, how my migraine symptoms changed over time, my migraine tests, and the process of getting a migraine diagnosis. Explaining my migraine story is a step toward chronic migraine awareness and how variable migraine symptoms can be. Even the doctors get confused about migraine disease, and that made it hard to get diagnosed properly and definitively. I have vestibular migraine and complex migraine with basilar aura or brainstem aura, but migraine symptoms vary between migraine attacks.
The truth about chronic migraine disease is it's so much more than just a headache!
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MY TOP 2 MIGRAINE PRODUCTS:
○ CranioCradle: amzn.to/2FIbjvn and deep tissue: amzn.to/3l2UrzD
My Review Video: • CranioCradle Review - ...
○ WeatherX Earplugs: amzn.to/31gJEtG and smaller: amzn.to/3l9vbI7
My Review Video: • MIGRAINEX EAR PLUGS: W...
OTHER MIGRAINE VIDEOS YOU MAY LIKE:
○ Symptoms & Stages of a Migraine Attack: • SYMPTOMS & STAGES of a...
○ My Migraine Medications (triptans): • MIGRAINE MEDICATIONS -...
○ Why I’m not on Anti-CGRP’s: • CGRP ANTAGONISTS // Wh...
○ Buddy’s Migraine Service Dog Tasks: • MIGRAINE SERVICE DOG /...
○ Real footage of a complex migraine: • The Reality of Migrain...
○ Migraine Jen’s Cooking Vlog: • MIGRAINE VLOG // Migra...
○ Migraine Jen’s Rules for Life: • Migraine Jen's "Rules ...
○ Brain Fog! (a few good Migraine Jen quotes): • MIGRAINE CONFUSION / B...
MIGRAINE AURA SERIES:
○ Part 1 (visual): • Migraine Aura Types (1...
○ Part 2 (sensory): • Migraine Aura Types (2...
○ Part 3 (language): • Migraine Aura Types (3...
○ Part 4 (motor): • Migraine Aura Types (4...
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DISCLAIMER: Links included in this description might be affiliate links. If you purchase a product or service with the links that I provide I may receive a small commission. There is no additional charge to you! Thank you for supporting Momming with Migraine so I can continue to provide you with free content each week!
Oh nooooooooo!! Little mistake at 18:30... somehow an extra "enter" squeezed in and the text got shifted downward. I'm going to leave it because you can still read it all, but just know it's driving me crazy. =P
I have fluid buildup on the brain (hydrocephalus) and back years ago I kept having headaches and I knew it was my hydro and I kept going to the doctor and they actually had the gall to tell my mom that there was nothing wrong with me, it was all in our heads, and they couldn't make something be wrong with me. I was IRATE and we actually walked out. We called my old neurosurgeon and told him what was going on and within 3 days I was having surgery because my shunt (device that drains fluid of my brain) had calcified and quite working, so we had to have it replaced. After that we stopped going to my neurology appointments at ACH, got my medical records switched over and started seeing my old neurosurgeon at Baptist. And thank goodness things worked out really good. I've had that shunt since 2011. But yeah doctors can be so rude and unprofessional. I think, if I remember right, that doctor had had repeat complaints though so he ended up getting his license revoked.
“Here i am, sitting on youtube, jobless and pregnant.” literally made me lol. i love your sense of humor
Haha, I appreciate that! I can be dry and sarcastic 😛
@@MommingwithMigraine Girl, the fun we'd have together. I'm the same way.
the "are you sure you're not making it up?" thing is I N F U R I A T I N G ! ! !
My second migraine, I had to be taken from work by ambulance and I thought I was having a stroke. I couldn’t write my name, couldn’t move the left side of my body. I had no idea migraines could do that. Thank you for sharing
That's called a hemiplegic migraine and they are very scary! I have them quite frequently but the first one I had I thought I was having a stroke. I too couldn't move the left side of my body and my face was droopy on that side. Scary! I now have them all the time and wouldn't know it if I did have a stroke so keep an eye on it. Don't know your age or health but once you have a hemiplegic migraine you will probably have more and could cause you to be more likely to have a stroke especially as you get older. Peace and be well
@@valleygirlgg I will definitely keep an eye on on it. Thanks
Jesus Christ that sounds bad :(
As you were describing your symptoms, I started to cry.
I'm almost 37. I fought for years trying to get help and eventually was able to get decompression surgery. They removed part of my skull and first vertebrae. When that eventually failed I just stopped talking to my doctor.
My MRIs showed either white matter lesions or gray matter lesions but I was told it was damage from "chronic headaches" ... My brain shows damage but yet I was still treated like I'm crazy.
I need to go back. Working from home is the only thing that is saving me right now...
I was VERY emotional listening to you describe your symptoms cause I relate to so many. Just knowing that someone else (even someone that doesn't even know I exist) knows what I'm going through and that I'M NOT CRAZY!
I promise you are NOT crazy!!! Doctors don’t help and it’s horrible and scary and so sad but luckily people are here in this community that can help and we can all try to understand it together. You’re NOT crazy!
I’m so sorry you went threw this, this kind of invalidating experience can lead to medical trauma and ptsd, I hope you find answers
@@siobhanhenry9094 for sure! This is the very reason I have experienced addiction to pain medications for which I now I have a doctor and have also just "suffered" for the last year and basically gave up.
When I contacted my doctor again I was brutally honest about this.
Living with chronic migraines, degenerative disc disease, (and a few other chronic illnesses) has ruined my life...
I know if I would've been listened to and never experienced being treated like it's all in my head I never would've tried to self medicate and I would've actually TRUSTED doctors.
I'm crying too! I just commented the same thing. Living like this is so lonely especially when no one is helping you
Have you tried IV Ketamine treatment?
I was diagnosed with chronic migraine when I was 16. Then I moved to Germany and my episodes stated getting worse. I went to the GP and told him I was having an episode that was lasting around 1 week and I needed a sick leave. He looked me dead in the eyes and said I was lying and didn't have migraines because episodes NEVER last longer than 24 hours. I just stood up and left.
terrible...I hate when doctors don't listen their patients. And migraines can last like forever...I personally have it for 2-4 days in a row.
He clearly didnt know what he was talking about. Migraines can last that long.
That's ridiculous, even most average doctors know that average migraines can last to up to 3 days
GURL. Your frustration with the medical system... I feel it so hard. Took me multiple years, multiple doctors, multiple jobs I couldn’t hold, multiple different insurance providers, and multiple near-death ER visits to get finally taken seriously and diagnosed with my slew disorder, idiopathic hypersomnia.
And since they just straight up refuse to understand what “it’s narcolepsy but not” means, I’m still fighting for disability.
Omg! I am also idiopathic hypersomnia, was doing ok on meds..... then I got into a car accident which caused chronic pain and migraines. 5 months later I couldn't work anymore, now a 8 hour assessment says I may have hit my head during the crash, because I have cognitive issues too. 2 years off work now I'm on the edge of being homeless and still can't get disability. Ooph and getting diagnosis from my gp rather than an independent doc is proving impossible! Idiopathic hypersomnia alone was rough but everything else is just too much.
Omg the part where you say you feel like you are going crazy because the doctors don't take you seriously, hit home so much. Even years after my diagnoses sometimes I feel that I am crazy and don't actually have a problem
I think that there should be a way to get doctors responcible of diagnosing people as crazy and imprinting us with that traumatic thought. Because I struggle with the same!!! It does not help that confusion is one of the possible symptoms of migraine. And that I clearly have been suffering from anxiety and depression before. And with anxiety diagnosis you get a bunch of similar symptoms "which are just your crazyness manifesting in your body". Aaarrrghhh! We are not crazy! We have a neurological problem!
Those doctors should be taken to court for an abuse!!!
I started having episodic migraines when I was 13. At that time they were very few and far between. They were brought on by bright lights in dark places (IE: TV in a dark room or Headlights on the freeway at night) The pain has always been centered behind my right eye and excruciating. After my 3rd child was born, I started having 2-3 migraines per week. I was EXTREMELY light sensitive and started experiencing vomiting with my migraines (the vomiting lasted all day). I had to black out my windows and remain in a completely dark room for the duration of the migraine and my mother or friend would have to come and take my kids because they were so young and I could not care for them during these episodes. The only major difference that I feel may have caused the sudden onset of these frequent migraines is having a copper IUD "installed" after my son was born. The migraines went back to being more episodic after it was removed. I am now down to having 1 or 2 migraines per month, but after watching this video, I am wondering if it is more than that because I always thought migraines were just the bad headaches and I knew the vomiting and light sensitivity was related but didn't know you could have painless migraines. I have frequent episodes of confusion and slurred speech, I also get what I believe is vertigo (especially in large stores I get confused, dizzy, light-headed, etc.), I am ALWAYS noise-sensitive and the list goes on. I have not seen a doctor for any of this because I don't have insurance and I really can't afford to go. I have really learned a lot from this video. Very eye-opening. Thank you for sharing.
I just found your videos, as a migraine surfferer since i was 14 years old, i gave up with the doctors and getting them to help me. i am a single mum and decided to take matters into my own hands. i found out about a piercing you can get that 'can help' with migraines. Its called a Daith piercing (aka migraine piercing). it was the most brutal and painful thing i have experienced outside of labor. but it was so worth it, i haven't had a migraine in 6 months now. still get the occassional headaches, but i can deal with that
not sure if you have heard of these, but thought i would throw it out there
What is a piercing
Frick me again... my hubby and i call it a migraine hangover. Sometimes I find it worse, more confusing and fatigue/pain.
You are amazing
As a migraine patient i cant really watch your videos without getting anxiety. I always get a panik attack when i start getting an aura and know the pain is gonna hit soon, so watching your videos reminds me of the feeling i get when the aura starts.
But i still do watch it. 😅 Thank you for sharing your story!
Im glad I'm not the only one this happens to! Had aura this morning still have nausea and im thinking watching this is probably not a good ideal.
I have the same thing. But this last time I got the aura I've had the headache for over 5 days. Is this normal?
I worked longer than I should have too. I didn't realize some of these were symptoms were migraines. I thought I was just a lazy $*** making it all up, exaggeration, though I sucked it up, but like I didn't believe all this was real. Thank you. For sharing. Please keep sharing.
Literally crying watching your videos. I’ve had episodic migraines my whole life and thought I knew and understood them well, until they became chronic recently and I started experiencing all sorts of new symptoms. I though I had serious illnesses or was just completely losing my mind. It is terrifying to learn that you cannot trust doctors to help you. Your videos are priceless and life changing. Thank you so much for sharing 🙏🏻❤️
I'm 51 years old, I was diagnosed with Migraines at age 12. There was no migraine medication back then so they told me to take Tylenol and Ibuprofen. Now they have me on 2 different medications-1 to prevent migraines and 1 to take at the onset of a migraine. The last one works, but I only get 10 pills per month and only allowed to take up to 2 per day. I learned a lot from your video. You provided me with a lot of information that now makes sense in regards to Migraines. I now have a non-cancerous Brain Tumor of the Right Perietal (sp?) lobe, and some symptoms mimic Migraines. Thank you so much for doing this video. I can refer the info to my doctor.
I like to call it migraine syndrome or disease, because while it's got head pain as a component it's not a headache, its multi-system hence syndrome, and its lifelong and generally hereditary hence disease. So I hate it when someone says oh its just a headache or I had a bad headache too. I'm like here let me give you syrup of ipecac, stick the sun right in front of your face, make everything smell and taste bitter or burned, make you forget what you're saying or swap letters on words, make your ears ring, impede your field of vision with color bursts, and last but not least put your head in a vice and smash it with a pan at the same time and make sure that it hurts twice as bad whenever you move. Then you can say its just a migraine or you've had a bad headache too. Okay sorry about that rant over I just hate the word headache because a migraine is sooo much more, and I just realized I'm having visual aura right now and am rolling into another migraine so that may explain some of the irritability towards the word today.
That's great idea! I will call it also Migraine syndrome as that make it sound something else than "just a headache". It might give people a pause.
My goodness what a story! The neurological symptoms you experience are so scary. It makes me so angry how dismissive the medical profession are about these types of symptoms. Something very bad must be going on in the brain to get symptoms a kin to stroke. Thank you for sharing your story and showing what you experience. It really does drive home how serious chronic migraine is.
The full week I was in hospital to diagnose what was wrong with me they thought I'm making it up. It's lovely how women aren't believed
My migraines are chronic and from this channel I have realized how COMPLEX they are. Because my deurogists calls them headache days to😔 and my dysautonomia is always my bigger problem.
But thank you for recognizing for disabling the other effects of migraines are. The complex non typical aura type ones.
You're so welcome. Thank you for taking the time to let me know that the content is helping out.
You should see the movie "Brain on Fire". It's about a girl who has mysterious mood changes and physical issues like paralysis and massive headaches. Based on a true story
First of all, as a fellow migraineur, I am so sorry you go through this. I've only watched two of your videos so far but for both I've been almost crying with both recognition and empathy. Thank you so, so much for putting yourself and your disability out there. I've had severe migraines for almost 20 years and am currently going through an Employment Tribunal (I'm in the UK) in relation to discrimination. Seeing your lovely self, and all those commenting makes me realise I'm not alone and really helps as things are rough right now. I've found my aura-tastic people!!
I've been in the "system" for nearly 50 years. The number of docs who treated me like a thinking adult number only a handful. Keep up your vigilance. It's the only thing we can do. Thanks for your postings and your honesty in reporting. I'm sad that you have to go through all of this, but I'm glad you're proactive about your situation and treatments.
I, very thankfully, do not suffer from migraines or any type of chronic disability, but I found your channel very educational and real and I'm thankful for you taking the time to provide this type of content. I also wanted to say that I am very sorry for the way doctors have treated you, and people with chronic illnesses (mostly women it seems...), being told you are making it up and not receiving the care you deserve. I am so sad that to this day, people are still made to feel like they are just attention seekers and like their pain isn't valid. I hope the scientific and medical communities will evolve to be more compassionate and caring.
The reality is between insurance company's and pharmaceutical companies the medical community can be inept and sometimes dangerous. You are a smart girl and a good researcher, trust your instincts. I had migraines for years, nothing as traumatic as your but weeks in bed and vomiting and vertigo. It was during my going through menopause, was has worked for me was eating a different type of diet and remove all scents and chemicals from my environment. I know your honesty and experience will help people. Wishing you good health and the best with your pregnancy.
This is so insanely validating. My migraines started when I started college and I was taking over the counter pain killers almost everyday. I didn’t even know what a rebound migraine was. I’ve made a lot of progress but I still have a way to go.
I've had episodic migraines for 21 years now and I'm about to be 28 next week. Honestly, I hate when people say when you tell them you had an attack last night that 'oh, I had a migraine too'. I had a boss one time who always tried to tell me her headaches were way worse than mine. Now I have a boss that calls them attacks and understands my situation because she cares. But not everybody is lucky like that.
I’ve had them since the age of 7 too and it makes me so sad to imagine a 7 year old going through this. I’m sorry you’ve had to go through it too
Wow. I’ve had migraines for 15 years, they turned into chronic migraine 5 years ago. The process of turning into chronic was bizarre, terrifying and like being in a nightmare. I would not be able to speak, I would become disoriented like someone with dementia. My sense of smell became so strong I could taste the smell, if that even makes sense. My sense of space would be distorted. It was like a bad acid trip and this went on for a few months. I also took topomax and felt like a human vegetable, just horrible. I have never, ever heard someone else talk about this stuff. To this day I have NEVER told my neurologist about the “crazy” auras because I don’t want her to think I’m nuts and not help with triptans, injections, etc. Thanks for being so frank. Migraines are not just headaches, they are a very real neurological disease. I wonder if because most migraine sufferers are women, doctors have written us off as hysterics (thanks Freud)! Anyways, thanks again.
Jen you have described something I recognise. My wife showed your epilepsy epsides and went to Dr. After tests she was diagnosed positive epilepsy. She is on epilim medication
I’m fortunate that I was diagnosed at age 9 with migraines after only 3 years of suffering. My migraines have gotten significantly worse over the years and turned from episodic to chronic three year ago, but I’m incredibly lucky to see a specialist at the Jefferson headache center. Unfortunately it took me until I was 21 to be diagnosed with POTS, and I still struggle badly with that. I adore your channel and love to see accurate education about migraine. Much love from Maddie and Sadie (sadieatyourservice) on IG.
I have episodic migraines. Not diagnosed at all. I'm almost 18. I didnt realize until I watched this video that the dizziness and floaty feelings were symptoms. I'm happy I watched this video because I've experienced these symptoms without head pain.
Its really bad, the lack of medication, or other treatments for migraine. Triptans helped my mother, but I cannot tolerate the at all. I even tried the Botox injection,but all I got from them was severe ongoing nausea, no migraine relief at all. I only got 3 migraines when I was pregnant,and I was in heaven! I hadn't known having time without them until then. I was finally diagnosed with Lupus (SLE) and my rheumatologist told me I could also be getting autoimmune migraines as well. That explains so much. Its still hard, but at least I have something. I truly appreciate your videos, and putting yourself out here. Best of luck to you!
I’m so thankful that during my first migraine attack at 23, I was working as a nurse for an Internal Medicine practice and my doc was on it. He told me the vomiting/unbearable pain that had me in the fetal position in a dark back room was a migraine. My mother had migraines, too. I was episodic for about 2 years until it turned to chronic. 16 years and many triptans, (and a plethora of other drugs) later, I’m at yet another crossroads. I don’t want to continue Aimovig, as it helped until it didn’t. It’s complicated by Ehlers Danlos, my aortic aneurysm and Right Atrial Enlargement. I have to now take triptans at my own risk at this point, as my POTS/dysautonomia has turned to weird hypertension from chronic triptans? All the wonderful then terrible meds from the rheumatologist? The Preeclampsia from my pregnancy? Who knows. All I know is, nothing I choose from this point is “safe.” The meds carry risks, my migraines carry risks, and I have to work out a decent quality of life somewhere in that. One wonderful thing: my neurosurgeon saved my life. I had a virtually unheard of symptomatic hemangioma (I think it was caused by my hitting my head on the bottom of an above-ground pool) and for 15 years doctors said it was not related, but I could FEEL it when migraines started there! Eventually a neurosurgeon listened, said it was textbook, and performed a C-5 corpectomy and 4-6 fusion and I gained a huge chunk of my life back because my migraines went from days-long, unholy puke fest that caused stroke-like symptoms, to “normal” migraines now that are fewer and more bearable. I went from 20+/month to about 5-10/month and I am so thankful ❤️
I've been homeschooled for about 2 years now because of my migraines, they threatened legal forces like jail or court. Nobody takes you seriously until your in the er and they think your having a stroke at the age of 10. Im 15 now
Got diagnos at a young age (under 10 yo) with alot of visits to neuro and hospitals before my parents and doctors figured it out. Aura, loss of controll in arm/speach, confused. That is not headache, that is scary. Then you learn to cope as an adult and when you have an attack, you get ”yeah I get headache to”...Thank you for this channel❤️ I suddenly feel ”normal” in all of this.
I get that too now :(
Plus I get vertigo
Are you taking anything to prevent the migraines ?
@@Salai_Dante Medicine to break an attack, but it only helps if taken before the headpain, and you only get limited amount. Do alot of preventive things (posture, relaxing shoulders, never put strain on neck, no alcohol, have a pillow for helping neck to relax and help from chiropractor) Finding out even small triggers and avoiding them all together helps. Stress is a major trigger, I try to avoid that as much as possible. How are you coping? Love from Sweden
@@Salai_Dante I was diagnosed with scoliosis as a teenager and my muscles in my hip hurt so body pain triggers my migraine. It’s not hormonal and therefore can be help alot by chiropractor
You are not a whale. You are beautiful, intelligent and strong. I didnt know someone like me/us, (chronic illness) could be a good parent. You have given me hope for a journey I have been mourning for 5 years. Adoption is my preferred path, everyone has their own journey and their own health history, but you encourage me so much that it is possible to go for it. Thank you. I guilt myself into non existence because of what I cannot or will not be. Fair point, guilt is one of my mood disorder symptoms. I think being informed and knowing our own limits (safety! Hard lesson, the floor hurts lol) is key. I look forward to watching your journey.
Ps. I dont mean this as a judgment on other parents. Its a self criticism that shreds me up. If I can't do blah blah than what right do I have to even want to parent? Again guilt, disease gets my head going.
We are the same age, similar education/career (I'm a pharmacist), and similar progression of our migraines. The difference is your symptoms were/are soooo much worse than mine. My symptoms are still "classic" symptoms and I started on a tricyclic antidepressant amitriptyline and it worked! I'm sorry your journey has been so much harder than mine.
Thank you for sharing your story. I've felt very alone in having my mental health questioned, being made to feel like I'm making up my symptoms, and having to do the doctors' job for them. I'm sorry you went through this crap too, but it feels good to hear a story similar to mine. Hang in there.
Thank you so much for making this video! I have had chronic migraines for about five years now and it is extremely comforting and validating to know I am not the only one going through these crazy experiences.
Glad it was helpful!
Hi! I’m 15 and I just got my diagnosis today. It was super interesting watching your video and agreeing to basically your whole journey to your diagnosis. I’ve always had headaches, since I was about 5, but recently they have become crippling. I missed out on a year of school because of seizures and we still don’t know why they were happening. This was very eye opening, thank you for sharing!
*I have intra cranial hypertension iih- it has taken my life's dreams away from me......but I am alive and dream new dreams now
Hey Jen it's Kelly. You are actually telling my story. Same meds ,unhelpful Dr.s My migraines are so similar to yours and when diagnosed with Dysautonomia (where one thing is we don't get the blood flow we need to our brains). I experience every symptoms of Dysautonomia. I have experienced paralysis, partial seizures, asphagia, memory loss, shake like being vibrating, etc. I thought I was losing my mind and the specialist would say "well you look ok" I'd leave so defeated. Finally about 10 years ago I found the right team of Dr.s Chiropractor, primary care physician and neurologist. They actually work together to help change any medical protocols that we all discuss and find what works. With you also having POTS stay mindful of the other symptoms in Dysautonomia and Fibromyalgia. Pinterest has great info. Bless you and keep it up.
Sounds like we are very similar! I know my diagnosis is incomplete... but in all honesty I've given up trying. Just too frustrating, and not worth it to add more acronyms to my name. I'm focusing on symptom management and enjoying the day-to-day.
The middle of your video was my story. Started with ear pain which I still have. Vertigo etc. I am sorry that you have these issues. Thanks for the help
My first complex migraine happened in 2016. I was working in another store an hour from home and my husband at the time picked me up. I started feeling the beginning of a migraine with pain and sensitivity, but by 5 pm it was all gone. Nothing at all. We went to dinner at 630 pm. While sitting at the table, I started slurring my speech, being unable to feel parts of the left side of my body and face, and more. My husband took me to the hospital and by the time we arrived, I couldn't walk and was drooling and my left side of my face was drooping badly. I got an MRI and CT scan and they determined it was a complex migraine. I had migraines since I was 11 and I had never heard of one like that. This video parallels what I'm going through now and I'm so thankful for you creating this channel 💜
The first few times are the scariest, it really makes an impression, doesn't it? Thank you for sharing your story, and you are so welcome! 💜
i'm literally crying right now! Thank you so much for making this video! It's like you're describing me! I'v been at a loss for what to do to get help and thinking "whaat's wrong with me now" forever and have just been like.. Dealing with it. But I too had debilitating migraines around like 14 and everything is so much worse now, but just like you have described (except still with pain). I'm going to make an eye appointment tomorrow. I feel like I'm not alone anymore in this. Im so grateful
Looking for a migraine support group.
Long story, but a good one.
My anxiety goes up every time a bad migraine won't go away or dull down after meds, and I've legit reasons to highly worry. My grandfather had an unknown medical condition that caused strokes. My mother, her mysterious migraine we thought were just side effects of her meds (bipolar, lingering chronic spinal pains after a car accident in the 90's, and depression), so meds for all that she was on and I, in my teens, had to monitor if/when she took meds and how her symptoms developed for new meds or higher doses. But....
One day after coming home from school, mentally she wasn't there. Her pupils were so tiny, I knew something very serious was happening at that moment and this was not a side effect from her meds. She couldn't answer basic questions. She was having a brain bleed, thankfully a slow one. During emergency surgery and after inserting a stent, they did a spinal tap. She came back positive for a rare genetic disorder of Norwegien descent.
This was an "Aha!" moment.
My grandfathers last name is Olsen. They told us what it was, and the only research info on the disorder they had and where to find more info online. So in 2018, I forgot what the name was completely, and per the medical providers policy, after 10yrs, old medical info gets deleted to save up space in their system 😒 Well, important info like my shot records as a teen was gone, and so was the experimental shot given to me after my mom was dianosed, a shot they hoped will "help decrease the symptoms when it happens" to me. Meaning the genetic disorder is so strong they believe I must already have it. So the mystery to figure it out again since 2018 is still ongoing, because of a lack of affordable healthcare needs.
And I'm writing this while my migraine has dulled a bit down. I was very nauseated about 40min ago.
A severe migraine for me could mean death, as in a brain bleed. What's scary tho is once my kids go back to school and days I'm home alone, if it ever does happen, I won't even know it. My mom was completely oblivious that anything was wrong while a blood vessel had a small rupture by her brain stem. Yea, that's how scared I am. I could be dead because of a sudden severe migraine and I've had the most severe pain ever in late 2019, vomiting made the pressure worse and I was fainting while puking. And the most common area of pain, is in the back of my head and lower neck. That's the area of the brain the disorder targets the most.
I just got my first job at 35, because my migraine attacks have declined after a change in diet that was to help my blood pressure. But after sticking to it and having normal blood pressure, like actually good blood pressure weekly, (now I'm also having to avoid most dairy products and beef), it has not helped the amount of pain my migraines get to, nor does it help decrease the length of the attacks. And they've increased with me being more active. Hey, at least my blood pressure is good so that helps.
I feel bad for you and I’m really sorry that happened. I have a similar occasion , i am 14 years old and I have severe anxiety everyday due to my migraines. I had migraines everyday (24/7) since December 2023 (almost 7 months) with non stop migraines. I am scared of getting something bad like a stroke or something like that. Having like 50+ symptoms everyday, some symptoms I have never had in my life. My anxiety calmed down ever since I found out I was diagnosed with chronic migraine because now I know what illness I have (I literally thought I had a brain tumor) BUT still I am anxious about it because things can still happen. I just don’t want to end up with migraines for 20-30 years of my life like some of the people in this comment section. I just pray to God everyday too see what happens🙏
I'm really happy I found your channel. I've had complex migraines and mixed/unhelpful diagnoses with no medications since I was 8 and worse into puberty. I have such a hard time explaining what it feels like and how disorienting they are and how disruptive to life and career. I think I will link your videos to friends to explain
Thank You for making this video. You described my journey to getting diagnosed with Chronic Migraines. Mine started at age 56 now I’m 68 and I’m still working closely with my neurologist. So far none of the modern medications work for me. Triptans do provide relief but I can only get 9 per month. I’m never going to give up my search for a cure
I recently came across your channel an girl I love watching your videos!!! They are very educational but in the best way possible and it makes me want to know more about things your dealing with an I must say you are extremely strong and that is very inspiring to me. I hope your channel blows up 10x over an than some. Because if anyone deserves to have a very high view count an subscriber increase it should be you. We need more educational an real youtubers who thrive on RUclips more than the stupid an fake videos that are currently... I’m praying for you an your baby an I can’t wait to see you an her once you are back into the swing of things. Thank you for being one of my favorite youtubers an a inspiration to me!🤗😇
Thank you so so much for the kind words 🙏 ❤ welcome!!!
Thank you so much! Especially your distinction about auras just made SO much sense of my life! As a teen I had complex migraines, just constant pain, constant symptoms, it sucked. But while I had all the symptoms it was still episodic - I got the clear cut auras. But a couple months ago I went suddenly back into a constant migraine symptom phase like I hadn't had since leaving Texas (my allergies in Texas were a huge migraine trigger for me). But now my auras are complex. I've been calling them blob auras as distinct from "dot" and "c" auras, which is what I call episodic clear cut migraine auras. But I had no idea it was just a thing. My doctor last week only had an extremely small amount of time for me and I barely got through everything I wanted to talk about and she started me on a new preventative med. I wouldn't have even known except for your video that preventative meds were a new thing. Makes me feel a bit better about being so silly to not get a med for my migraine pain at least for having had them episodic for a decade. At least I don't have to beat myself up that they were preventable this whole time. I mean, I wish we'd had funding forever ago so at least other people who weren't shamed into avoiding seeking help could've had them, but you know what I mean. Thanks. :)
This might not mean anything to anyone, but I'm glad i found your channel. I been having really terrible migraines since i was (at least) 10. They used to be so extreme, that i would throw up, and i couldn't go to school but they only came on my period. Now they're still really bad but with different symptoms (light/sound sensitivity, still pain in one side of my head) but i also can't open my eyes, see without tunnel vision, or walk straight. Unfortunately, they're so debilitating, i have to miss school or work because i just can't open my eyes and the pain is so severe. Thankfully, i know I'm not alone! Even though I'm only 18, its very comforting
Also does anyone feel the need to hold the area where the pain is coming from, but it hurts so bad so you don't/can't touch it?
I am so happy I stumbled upon your channel. I’ve had chronic migraines for 14 years now. My worst migraine caused me to have numbness on the left side of my body and I thought I was having a stroke as a teenager. I also have fibromyalgia and am being tested for POTS. Currently my diagnosis is orthostatic hypotension. My biggest problem with migraines: I’m allergic to triptans.
Welcome! We are very similar! Some of my fainting episodes seem to be more OH than POTS. I'm dx with both. Seems to depend where I am in the migraine cycle. If you can't do triptans... maybe Cefaly? Big cost, but you can try it risk-free for 60 days. I didn't like doing the preventative setting because it made me so tired, but the abortive worked well. Strange sensation but you get used to it.
@@MommingwithMigraine I've been on inderal, topamax (both caused fainting episodes), depakote and currently ajovy and verapamil (preventatively). The mix worked miracles and I would take nurtec for an acute attack. However, ajovy and nurtec both are so new there's no pregnancy studies and my husband and I are TTC for baby number 2. So I'm down to verapamil and fioricet.
My diagnosis is daily chronic migraines. I had some migraine symptom every day for about 2 years. Botox gives me actual symptom free days but yeah... I started hurting constantly late 2016, but I couldn't get into a neurologist until the following April. I lost my job by then. And that means I lost insurance. So I had to switch neurologist. Another 6 months to wait for an appointment. No meds were working. I'm allergic to the triptains. I tried Maxalt, Topamax, etc. I started Botox in 2019. Stopped to try Aimovig which did nothing for me. and started botox again a few months ago. It gives me some days but that's it so far. Watching your video makes me want to cry because this means it's not just me.
"maybe, hopefully, if it worked..." Fucking preach
Hi,
new to channel. I can identify. When I first started seeing flashes of light and thought I was drinking to much coffee.
Fast forward and although I cut down on caffeine it became obvious the eye issues where not in my head. Tilt tests, a muscle biopsy and here I am.
I look forward to your videos. I pray for all of us who suffer from this.😉✌
It wasn't until my mom was in her 40s that she learned that some of her 'weird shake attacks' were what her doctor at the time called (I think) 'white migraines', which were just aura and no pain. Painless migraines, who'd have thought? She would end up shivering and shaking for hours at a time with no idea what was going on and thought it was related to diabetes or hypoglycemia since I have the latter and it made me shake. But never for hours at a time or regardless of what I ate. Sometimes it would come with the visual disturbances that were the hallmark of the painful migraines she used to have (the classic squiggly line but in her also sudden onset of tunnel vision where she coudln'ts ee anything but a small point right in front of her0 but usuall it was just shaking and mild confusio (mild enough that she never really realized she was having it until I pointed it out)
A don't ever comment on videos and I don't even know why I never thought about checking out migraine on RUclips, literally I feel a relief about my mental state cause I've had all of the symptoms you described, I have been taking way too much excedrine knowing it doesn't do anything, but the current health crisis it's hard for other conditions to be treated. Thank you for your videos and I wish you all the best!!!
I was having Episodic Migraines for about 5 years. At the end of September I was diagnosed with Multiple Sclerosis and ever since then I’ve had Chronic Migraine. The first medication they put me on right as I left the hospital was Topamax. Just like you, I did horrible on it. There were days I could put form a complete sentence or even remember what I ate for breakfast that morning. There was a solid week and a half where I couldn’t walk or get out of a chair on my own because I had no strength or feeling in my legs. I had a terrible tremor that made me throw things across the room. I was even hallucinating at times. I literally thought I was dying. We thought my MS had just gotten really bad really fast but then my mom did some research and realized it was the Topamax. Since coming off of it I’ve been doing better. I’ve been on 4 different medications in less than 4 months and none of them have worked. I still have my fingers crossed 🤞🏻
What are your symptoms of ms I have migraine fybromyalgia symptoms 24/7 just lost my mum to severe ms
I'm so glad I found your channel. I started having weird fainting spells, walking into walls when I was certain I was walking straight, and strange hearing problems. Through shear luck, I ended up meeting a nurse during my hearing test who worked with another ENT doctor in the clinic who studied migraines. I am so thankful that she was able to tell that my migraines (which I already knew I suffered from) could be causing all this weird stuff. The new ENT doctor gave me 2 packets that he had put together on his own explaining all the things migraines could cause. I unfortunately didn't have the money to keep seeing that doctor, but those packets were so helpful for me to not freak out. Now your channel is further helping me recognize other symptoms as well as rule out things like whether I have an associated aura. Aside from that one doctor, most of my migraine journey has also been handled and managed through my own research (I'm also in STEM). It's sad that pretty much since I was 8 years old thinking I was dying, doctors have been pretty useless when it came to diagnosing and managing my migraines. Thank you for making these videos and spreading awareness. I'm also trying to figure out how to better contribute through research.
Sometimes we are guided to the right people at the right time! What are the chances of meeting a doctor who has personally put together an information package like that!!!! So cool to find this hope that eventually we will find what we are seeking for 💕💖💕💖💕
"I suggest you don't get chronically I'll, because it's gonna take frickin months - which add up into years..."
Yes. This. 🙈 It's so hard being young and seeing other people getting ahead in life all around me. And I'm stuck at home, jobless, and trying to find ways to be a functional human being. 💜 It's insane how relateable this whole video is.
Side note - that's almost exactly what my partial seizures look like even to this day.
And a question - how do you feel about the idea of renaming migraine? It sounds silly - not, like, literally making up a new name for it on the spot, but advocating for a name change that helps people with migraine (maybe specifically Hemiplegic or complex migraine) get more serious help, avoid the "headache" stigma, and get more funding? Renaming the condition would definitely bring a ton of attention to it, too. I'm sure there's a lot that would have to be done... A lot of red tape and hurtles. And people (other than us) are probably too complacent to want to change things. But it's something I've been thinking about for a long time.
Sorry - I hope that comment wasn't too overwhelming! I have a lot of questions and a lot to say. 🙈
I'm bummed you can relate so much, but so glad my content is resonating so I can show you that you're not alone! It's tough to be stuck in place while the years fly by. As for renaming migraines, that's an interesting idea... definitely something I've joked about (can't believe chronic, episodic, and complex are the same name), but not something that I've seriously considered. I'd have to think about it. Logistical nightmare...
@@MommingwithMigraine Yes, for sure a logistical nightmare. It sounds impossible, but that never stopped me I guess! 🙈😂 But it has been done before with other conditions, so that gives me hope!
Hope you guys enjoy this one! I'm curious... how long did it take you to get your chronic migraine diagnosis? On my Instagram poll, there was a range of answers from a couple months up to 6-12 YEARS!!!
Years after my two brain surgeries although they say that is a sign of a tumor or a bleed on the brain
It took mine 4 years. I just got it a couple weeks ago. It took until I went and saw a migraine and headache specialist in Louisville, Kentucky to finally get one. I had already seen a different headache specialist and they said it was just anxiety but for me it has been dismissive doctors like them that caused me to become anxious that every doctor will dismiss me and say it is just anxiety
I am still in the process of getting diagnosed. The only information I have is that they are abnormal migraines. I highly suspect that it is hemiplegic migraine since all of my symptoms match those of a hemiplegic migraine.
I had my first migraine that an adult recognized as such sometime around 14 or 15. But they stayed pretty infrequent (1 per month or less) for years. Now they're much more frequent & I was sort of diagnosed loosely with migraine (no specifics) last year at age 34. I still don't have any effective treatment really and haven't even been prescribed triptans yet for some reason. I'm starting to get vertigo and speech affects during prodrome now, hoping for triptans or other option soon but my neurologist is a bit scared to treat me because I'm "complex" (lots of other diagnoses including dysautonomia, connective tissue disorder, asthma, possible mast cell disease, etc). Thank you for your videos, they're so helpful! I had NO IDEA my vertigo and aphasia might be linked to my migraines until you talked about that and now that I've tracked their occurrence they definitely seem related for me.
I was lucky. I saw my first neuro within about three months of the onset of symptoms. She said she couldn't help me and that I needed psychiatric care after talking to me for five minutes, but didn't explain why she felt that way. My husband was with me and he was baffled - at no point did I sound "crazy" when talking about my experiences. We were distraught but I then started thinking it was all in my head and completely my fault. Then, about a month later, I had a seizure while driving. I saw a neuro the next day. He diagnosed me with complex migraine. Since then I've had a lot of extremely atypical symptoms that my neuro hasn't fully acknowledged (dyskinesia and dystonia namely) but I feel confident that what I'm experiencing are migraine events. Atypical migraines run in my family, buy they look more "normal" than this. Never did I imagine migraine could manifest in this way. We are still on a journey - it's hard to find help since mine are so disabling. I've yet to put a name to a lot of my symptoms because the diagnostic process is so slow. ER visits have been necessary, but management at home afterwards has been hard. Doctors listen for a few minutes, prescribe meds, then move on. And they focus too much on pain management - I have very little problems with pain. It's the barriers to living a normal life that are the hardest - when I struggle to walk, talk, or eat due to ataxia or other problems like that. They always ask me about my "headaches" - but the reality is that my situation goes far beyond the small amount of pain I experience. Thank you for your channel and for bringing awareness to migraine conditions. 💜
Your story is sooo much like mine. I just recently was diagnosed and tried the Topomax with horrible side effects and now they want to try something else.. I’ve been so scared and at a loss. I am a stay at home mom of three and this has been debilitating. I am looking forward to your videos once baby arrives. Thank you for sharing!
Getting this diagnosis is a horribly debilitating position to be in and I can't believe you're managing 3 little ones. Topamax is notoriously hit or miss. Keep working with your doctor and don't give up!!! It does get better. You'll keep learning ways to improve. Don't forget... life can be happy even WITH the migraines. Chin up, you've got this 💜
I am an episodic migraine sufferer where it appears as debilitating, sick headaches, and those are bad enough. I can’t imagine what symptoms & a struggle as you have described there would be like.
I am the same even though my migraines had lower over the years that I only had one a year for the last 3 years I haven’t had any this year, hopefully I’m not going to get it, my sister was the same until the point they simply stop I don’t think she had one in more than 5 years, my mom migranes only comes every year as well but they are pretty bad (only the pain vision problem and nausea)
"This is a really long time to just talk to nobody"
Not nobody! We're here. We're listening. We're learning. :) This is really important information that can help people!
My father had crippling migraines for most of his adult life, the kind that required dark, silent rooms. So when I started experiencing issues a few years ago I didn’t think it could be migraines. After many months of cutting out perfume, anything scented, trying different allergy meds, and missing a ton of work I talked my doctor. She immediately scheduled me for an MRI and referred me to both an ophthalmologist and a neurologist. My MRI came back with white spots and a flattened pituitary gland. I was put on the wait list to see the neurologist.
Thankfully the ophthalmologist got me in quickly because it turns out I had high intracranial pressure! I had been experiencing vision issues for months, mostly at work. My vision would go double, it was impossible to focus on the computer screen. At one point I actually had to pull over on the freeway and switch seats with my husband because I couldn’t see. I thought all of these things were stress because I was unhappy with my job, or that I was “making myself sick” in order to avoid work.
Within two weeks I had a lumbar puncture to drain excess csf and started in diamox. It was a rough road with treatment because I had some episodes that didn’t respond to treatment. Turns out I have migraines and high intracranial pressure. My first neurologist wouldn’t treat both, she was so focused on the IH that I could only get help from the ER when I had an actual migraine.
After a lot of trial and error, and honestly, flat out disagreeing with my doctor, I went off a medication I had started taking shortly before the pressure issue started and had my IUD removed... and now I just have migraines, no pressure issues. This experience really taught me to do my own research and advocate for myself. Luckily the new neurologist I started seeing in January was treatment happy. He basically gave me everything I asked for... so in some ways, 2020 has been a great year for me because the IH is under control, I’m on Aimovig, and I have abortive my migraine attacks. I’ve missed so much less work this year!
What you said about migraines not always looking the same way really struck me. I was so sure I couldn’t have migraines because there were so many days I could function, laugh with me - looking back I don’t know if if call myself functioning during an attack.
I didn’t do a lot of research about Aimovig before starting in January. Now that my IH is in remission I feel like it might be time to stop the Aimovig and see if I can go on without it.
Girl, I agree. I'm 45 and I started having migraines since I was in high school, around probably 15. My migraines have definitely morphed through the years. I get the ocular migraines, and those are painless, but my neurologist did tell me about this. Most of my migraines are with pain, and I get nauseous. I use triptans in order to deal with my attacks. I can work, fortunately, but my husband passed away last year, and I have children, so not really able to ask for help if these attacks get to be chronic. So I try to keep a diary and pray that they get better instead of worse. 🤷♀️ Thank you for your videos, love them, love your attitude. Love Buddy too by the way.
You will never know how your video is going to change the course of the rest of my life! Watching your video I kept thinking oh my God, she is me! 😭 words cannot tell you how truly thankful I am for your videos today. As I lay in bed recovering from another attack I have some peace of mind knowing that maybe my days won’t be filled with migraine for the rest of my life. When you said my poor husband, I thought of my husband who has been through so much in these last seven years after seeing me survive a near fatal accident. I believe these attacks are a result of the traumatic brain injury I sustained. My poor husband. That resonated with me. My days are filled with these symptoms. My life has been on hold for seven years. We both have been down a similar path. I am going to briefly go forward and face yet another doctor and try to explain. It’s daunting and I’m not sure how to go about it. honestly I have quite a bit of trauma from the doctors I’ve seen over the last seven years.I have journaled the things I’ve been through. Maybe those cursed journals will help me. I wish you all the best with your new little baby. I’m very happy for you! Savor every moment! My children are all grown now but I can tell you that they were worth every minute of hardship to raise. They are dear friends to me. I don’t know how I would have gotten through these last seven years without my daughter and son. So congratulations to you and your husband❤️❤️❤️
I am so, SO happy my content has helped you. Sincerely. I'm speechless. Thanks for sending love 💘
Watching your videos makes me feel so much less alone with my migraine struggles. The whole time you were talking I was just like yes girl, same! I am still working and everytime I have to call out for a migraine I beat myself and say why am I like this... most days I just struggle through it all... Thank you so much for your content 🙏
Omg you gonna make me cry, I thought I was the only one, n I'm afraid of going to the doc n suffering alone. Finally I'm trying to get help but I just realized there is so much unknown out there and our medical system is crap and don't get me started with insurance. .... anyways thank you so much
Omg so glad i found your Channel!
I have Vision problems when i get migraine. I cant see, im getting sick that i have to vomit.
And a headache of course.
But the other Problem is, i cant watch or hear about this toppic that much, because im starting to feel like im getting one and my heart is racing my throat is getting tight.
And i feel a lot of anxiety right know.🙈
I have the vision issues and vomiting as well when I get migraines. It sucks, but its so reassuring to know that I'm not the only one! I'm sorry you suffer from this 😟
@@AndreaBearyAndreStein im so glad that im not the only one too!
If i feel like im going to get one i take "ibuprofen" most of the time it Stops it and im not getting one.
But it sucks anyway.
They really should do more research about migraines!
@@carocurioso8385 thats great that ibuprofen helps for you! It helps me too...and sumatriptan succinate tablets...i take them when I first feel it coming on...doesn't totally stop them but definitely shortens them. I agree that more research and attention on migraines would be beneficial!
@@AndreaBearyAndreStein Thats great, that you also have something that helps you a little bit!
Yes ca. 80% have symptomes so its not like it is something that does not exist.
I didn't know that migraines could be painless. I'm an incomplete quadriplegic with a brain injury and I have a constant headache that feels like the congestion you get in your nose when you're sick but it's inside my head. I've had it for 13 years and don't notice it anymore. I get migraines on occasion but thinking back on them now, and the way you described a painless migraine, I mush get them more often but I didn't know they could be migraines. I get this tingly feeling in my fingers that goes up and down my back and this feeling like my brain is spinning. I get sensitive to light and sound and certain pitches of sound and a feeling like ringing in my ears. Random dizziness is a thing too. It never occurred to me until now that they could be migraines. Thank you for this video
It could also be cervicogenic headache from your neck. How long ago was your decompression surgery for your spine? The area above and below it can develop stenosis. You can your ask drs to scan your neck. The brain injury also can cause headache. I had cervical myelopathy from a bone spurs and had headache everyday for almost a yr before my surgery. They mostly went away post op. Then I had a head trauma with whiplash 3yrs ago at work. I had painless headache with nausea, dizziness. Now I have headache from the area above my surgery being tight. Also, there's autonomic dysreflexia quads can have. I had that for 6m after the myelopathy.
This was super interesting, because I always got fairly regular headaches, but about 5 months ago I got extreme vertigo and didn't even know it was a migraine symptom until I was in the ER! It is important to know all the different symptoms that are associated with migraines.
Thank you for uploading this video. I am diagnosed with migraine and sent in my way 20 years ago. I had a the worst one this week with different symptoms than I ever experienced before. Uncontrollable shaking, hot and cold flashes just trying to change positions felt like the earth's core was pulling me down... all new to me.. Thought I was going crazy but hearing you say these things confirmed I need to push my drs.
This is super helpful. I have had two migraines that I felt comfortable calling that. I had visual auras for both, and one where I had a language aura and was unable to speak for a while. These both happened while I was at work and were very frightening. I was worried I was having a stroke when I wasn't able to speak, but once I was able to speak again I talked to a coworker who has migraines and she said it sounded just like a migraine attack. I felt calmer after that, but I would have probably rushed to the doctor otherwise.
You hit it right on the head. I started to have them when i was a kid and my mom died when i was 19 from aneurysms, she would have stokes and seizers all the time. Back in florida when i was a kid they scanned me often for the same things but didnt find anything. Today, they are back again, changing once again from what i thought i had, now i have eye pain and didnt know that was part of Migraines. Waiting for the eye doctor to have a opening to let me in but they are booked out for months. Just got on a Toprol XL again for preventing them and i also got the sumatriptan injection. Took my first injection today and it worked great, since its hard to keep the pills down with the nausea. I hope these helps save times that i need to go to the ER , that gets expensive. When i was in my 20s My BF and i at the time also didnt think there was much for them to do for me so when i had a bad one, id just lay in the bathroom crying in pain and throwing up nothing. I am glad i can get fluids and meds in when i go in but i shouldn't have to decide between on paying so much or just suffer days without drinking anything . The system really needs help and if i could be part of a study i would, because my mother and I both have this , i just hope that if i have a kid one days they wont have to deal with it as bad.
Flonase is an allergy medication. I used it for a while, and it worked great for my allergies. My migraines and headaches however not so much. I had to quit using it when it started triggering daily nosebleeds.
I HATE, HATE, HATE my migraines. They keep me from holding a job. Even normal, minimal day to day functioning is hard. And what l also really HATE is when doctors don’t believe me about my pain. I refuse to go to urgent care for them now, what’s the point, they won’t treat me. I just suffer in silence. Migraines have completely upended my life. My symptoms amplified extensively after i got covid. My mom and grandma suffered from them too. When asked how many migraines per month i got, i told my doctor it was faster to count the number of days I don’t have one.
This hit home so much! My journey hasn't been like yours in a lot of ways but I've had migraines since I was 6 or younger and whenever my parents took me to the eye doctor, they never called it a migraine nor did my pcp. Now that I've been diagnosed with hemiplegic/complex migraines I recognize the symptoms I have daily, as the ones I've had off and one for 2 decades. I had my first bad one April 2019 and finally got diagnosed with migraines and the end of August (3 weeks after my wedding) I had my first ER visit followed by another 6 days later with aphasia and being treated like crap. Fortunately I lived near a headache specialist and got in to her in October. January, I was on short term disability cause my husband had to make me stop pushing myself as I went to chronic really fast. Topamax made me so forgetful and the headache specialist stopped that after I'd been on it only 3 weeks because of that and numbness. None of that's gone away. So now I stay home on permanent disability a year later with an intractable migrainesince April. I still have hope for a treatment that works but I'm so tired of all the meds and not taking me seriously about things. From April 2019 to January 2020 I had tried and failed over 20 separate meds. (My therapist told me I am not crazy though at least!)
I meant to watch this last Friday but the dang migraine has been a beast the last week and a half. Thank you for sharing your journey!!!
Thank you so much! I was diagnosed with migraine with visual aura when I was in jr high school. I recently turned 40 and it has been changing. I stopped topamax when I began having kidney stones. I have had very few in the last few years since stopping it. My migraines have been changing and I fought for a mri when it changed last time. I do see some symptoms that could be ms but I had no idea it could be migraine!!!! Thank you so much!!!
Migraines need so much more attention and research, it's ridiculous. First neurologist put me on Topamax and it was a nightmare. I was hallucinating, I was constantly hot (really bad when you actually cannot sweat, lifelong issue), and I couldn't eat, I lost 40 lbs in the first month. That neurologist retired during that month, so I was sent to my current neurologist, who immediately diagnosed me with epilepsy and that some of my migraines were seizure auras and not just migraines. Obviously, seizure meds improved the migraines that were seizure-related, but not really the others.
Seven years later, two surgeries and nine medications later, I'm slightly better with both issues.
Wow, what a story 🤕 Slight improvement is great but more would be better! More research would be so cool... I'm still curious about epilepsy in my case, or if there's some other rare thing going on. Time will tell, or maybe not. Sending spoons your way, and I hope you're able to gain more quality of life!
@@MommingwithMigraine Thank you. My boyfriend has been with me from the beginning and a lot of times, I'm not sure how he's able to keep up with everything I need help with. That kind of support, just like your husband, make such a massive difference. I'm so glad you have him! It could be, maybe your neurologist will look into it more or something. Definitely deserve answers and I hope you get them one of these days. Your videos are wonderful and you're doing a great job informing people on how these things are, especially with how vastly different they can be and how quickly it can jump from tolerable to incapacitating. I felt I was alone in some of the issues I had until you mentioned some of those things in this video, so validating.
Migraines reduced from daily to about 4 or 5 times a week and seizures from 40+ daily to 20-25 a day. Still a lot, but I can work a few hours a week and leave the house now.
I have migraines but mine are not the same as yours I just have the ones with the aura and stuck in the dark with no light or sound is the type of migraine I have had in the past migraine just isn't a headache thank you for understanding that because most people don't thankfully I don't have them very much anymore they were more prevalent in my teenage years
Wow! Your story really resonated with me. I've had migraines my whole life. Yet only today learned they could be a disability. I've have migraines with auras ( I didn't realize they were auras until your video series) more days then not and just thought it was normal. I've always just been told to take painkillers. I feel the lack of urgency and not taking patients concerns seriously! For me I've had dizzy spells ever since fainting at 8. I went to a specialist and they ignored me and said you have fainting spells before walking out. Your channel introduced me to pots and after testing my heart rate I think I have it. I'm annoyed that for years they ignored my daily symptoms and focused on my episodic fainting. Sorry for the rant. Anyway I love your channel. Keep up the good work!
Also no one ever told me nystagmus could be a migraine symptom. I had bad nystagmus for a couple weeks and more episodic ever since. My doctor had no clue about nystagmus, the causes, and didn't seem to care...
THANK YOU so much for telling your story, especially with such attention to detail. I am grateful for your generosity. I find it very triggering to 'splain my symptoms to others, and to tell my own story. This is a video I'm going to send to people who want to know about Migraine Disorder. May miracles for migraine sufferers and educators. HEART!
You are loved. Mine was misdiagnosed as mental illness or drug use or alcohol at the start because I have a lot of tattoos and I dress funny. It was awful because alcohol and drugs are against my religion. It turns out that I have pots syndrome, complex migraines with auras, and degenerative disk disease. None are fatal but all have given me ptsd. I hope that this can bring awareness of the reality of migraines they aren't just a headache. For me I use a mobility scooter and have to pull over and raise my legs against the scooter while laying on floor. Much love your amazing
Thank you so much for this video, I’m into my third month of day to day chronic head pain , ringing in brain and light sensitive eyes , all started 8 months ago , I am 45 and have never had migraines before . I am having scans and my doctor just started me on propanalol
My world is crashing around me … Ryan ( England )
I've got it years though necack shoulders armpits neurologist says it's migraine in the body how are you now
YES doctors always think I'm faking things! I don't have chronic migraines but I do get probably 1-2 a month and I often get dizzy/fainting spells. I mentioned it to my doctor years ago and was told it's "psychosomatic" but this doesn't get any better or worse with my mental health like I'd assume psychosomatic symptoms would. Also once my doctor took me right off my asthma medication because he thought my breathing sounded fine and I didn't really have asthma. Turned out it sounded fine because I was on the right dose of medication 🙃
Mate, tell me about it! Attitudes towards asthma, especially in the medical community, are awful! People can't seem to understand that it isn't just being "a bit wheezy" your airways are literally being constricted and people frickin die from this, and not just frail older people with other contributing factors (not that age or disability should be a reason to die from a treatable condition). I got put on propanol for anxiety and then ended up in A&E because it caused a severe asthma attack, which is well documented and should never be prescribed to people with asthma. And then this year I've had 2 other doctors try to prescribe it to me for migraines, even though my asthma is now way more severe. One of those doctors also told me to take ibuprofen even though that is similarly dangerous AND I have documented family history of it causing gastrointestinal bleeding. I also had one doctor tell me that my asthma "isn't that bad" and I should be going to work during the Covid pandemic even though I'm being referred to the lung clinic for suspected severe asthma and have had multiple steroid courses for flare ups as well as paralysis making my breathing more difficult and potentially have MS.
I also, got told that my paralysis and migraines were "just because of stress". It doesn't really make a difference if it's psychosomatic or stress related, it's still paralysis. It might change the treatment but it's still debilitating and can potentially cause injury. Plus having a mental illness should never mean that your physical health is comprised through lack of healthcare. Mental health issues are co-morbid and sometimes symptoms of so many complex and serious illnesses like MS, brain tumours, thyroid dysfunction, heart problems, B12 deficiency caused by crohn's disease etc.
@@leehugill9309 I was laughing as if doctors would see this comment they would feel so stupid!!! And because, I could relate so well!!! Exactly exactly EXACTLY!!! If anxiety is a symptom of many serious diseases why it does give a permission for so many doctors to dismiss it as: "You have an anxiety. So all your other serious symptoms do not exist!" I have been called hypochondriac also hahhhaaa 😂😂😂 I am laughing, because I feel that finally I have found my right diagnosis as complex migraine and releaf is immense! Finally I know what I am dealing with! And even that this is not a great diagnosis, but at least I know I am not crazy!!! 😊
Anyway, your comment was SUPER quality and very well expressed the frustration what I feel when I go from doctor to doctor!!!
@@leehugill9309 And LOVED your logic!!! Sharp as knife!!! You are more sharper than any of those doctors who you were talking with! ❤❤❤ Keep going!
Thank you for this! You have helped me to understand so much of what I experience with my migraines. There is so much that I brushed off or disregarded as "normal". I also have a heart condition which makes me curious about the co-morbidity. (Fun word yes?) I have isolated systolic hypertension due to a structural defect. It causes tachicardiardic runs when my pressure drops. I have learned to stop it by contracting my abdominal muscles, that increases my blood pressure in my heart. Something my cardiologist(s) never told me about.
Me too I have severe migraine mitral valve regurgitation and aorta mal function and AFIB.
I have both episodic migraines and chronic headaches. I think. I know that i have a low level of pain in the back of my head everyday, it has stayed like this for around 8 years. Sometimes they spread to the sides or the front of my head. It usually feels like either pressure against my head or from the inside pressing outwards, this usually occurred for 1 to 3 days at a time around once a week or so. I started getting proper migraines, with sensitivity to light, sound and touch, dizziness, lightheadedness and throbbing/ pulsing (sometimes painless) around 6-5 years ago. I get them 2 or 3 times a month, each lasting around 2-5 days. I don't have a diagnosis because i don't feel like it would do anything for me but that might change in the future.
I saw the rest of the video and you get ear aches?! I have what i personally call chronic ear pain for 2-3 years. I have a history of ear infections but they are usually paired with fever and the the pain i have daily or so does not come with fever.
I do get ear pain and ringing in the ears. Hope you get answers soon!
I’m past the episodic and into chronic. I’m on imitrex shots, sumatriptan and sertraline. The preventative meds always lost effectiveness after a few months with a lot of side effects so I gave up on those. I call my chronic migraines ‘walking’ migraines bc I can still function somewhat while in a major brain fog. My family can tell bc my voice changes and my brow crinkles. Anyways, it’s nice you see others sharing similar thoughts, feelings, and symptoms. Hugs to you and your hubby!
Magnesium oxide 400 mg every day will help you really well it will take about 1 month to work. There is an epidemic of magnesium deficiencies. A neurologist from Cleveland clinic prescribed it to me.
For someone with a deficiency yes, and that's usually the first thing they'll check. For people like myself and others the migraines are NOT from deficiency but rather other things.
I have ptsd, and one of the only meds they have for nightmares(meaning they dont have medicine, except for maybe the nightmares) is blood pressure pill. So if you have a normal blood pressure, it can bottom you out. It made my nightmares more realistic.
Its so scary to have these symptoms when you are just trying to feel better. Im sorry that you went through this 🖤🖤
I appreciate it 💜 I have low blood pressure but I'm still on a beta blocker for the tachycardia and yes... it can really bottom out your pressure! And since you mentioned it... I've been having extremely vivid nightmares but I was told it's pregnancy anxiety. After your comment I wonder if it's the beta blocker! You might have just saved me a lot of precious sleep. Thank you.
@@MommingwithMigraine it very well could be! 🖤 Glad i could offer a different perspective, after all you need sleep and do not need to stress more than you already are 😊
@@melissamoon9439 I'm trying sleeping without it tonight, we will see how it goes!
@@MommingwithMigraine do let us know! 🖤
@@melissamoon9439 no crazy nightmares last night. Holy moly. I'll try a few more nights and see if this holds. Baby and I are so grateful 🙏 💕
My story with migraine is weird too . I started experiencing sinus infections plus migraines. I was 19 when I had my first migraine. I am also visually impaired and going to college meant trying to read small parallel the time . I also found out that I was allergic to pretty much everything outside so I started have aura before a migraine witch scare me . I will go blind for a few seconds than bunch of colors like circles and I will very light headed. So I thought it was something to with my eyes so I went to my eyes doctor and there was nothing wrong my eyes but he sent me to hospital and I stay for a week and after some test I was told I have a migraine brain plus I will always have a sinus infection with it too. I had to drop out of college because of my migraine and sinus infection. I had to give up my favorite pastime which is reading. I have not found a medication that works for me and now I have fibromyalgia for the 13 years and migraines are a part of the symptoms of fibromyalgia. My aura are different now and I don’t always caught it. I don’t know that it can make you sensitive to touch though.
Thank you for taking the time to tell your story and speak on this disease 💜 #migrainewarrior
😢Sending pain free days to you❤
I appreciate it so much!! Right back at ya
Thank you I have chronic as well as tension headaches also menostral migraines so I throw up 3 days straight no meds help because I throw up anything on top of head pain and going to ER is a waste because they think you are looking to get drugs only doctors that get it is the ones that get them or have loved ones who have one. Been going through this since I was 27 now I’m 41 and my neurologist after my test said was genetic because my grandma had the same as me and also my only aunt on my dads side had them and her daughter. Your lucky because your husband hers or mine makes it worse because he don’t get it so hold bless you !!!!!
Hi I'm new to your channel my name is also Jennifer and ironically found you while up late with what I considered my precursors for my migraines 🙃. I've watched only a number of your videos so far but you've made since of somethings I feel & I'm now definitely going to get into my neurologist again with the new info learned not only on your channel but the sources you mentioned. Unfortunately I also am on disability for other things but am realizing some of them could be part of migraine. Thank You for sharing your story. I've been thinking of sharing mine but as you often say if you don't live these things it can be very hard to understand. BTW Buddy is awesome 🥰
I don't have chronic migraines, but I have a similar experience as you with my Iron Deficiency Anemia. It took the doctors ages to figure out that's what I was suffering with. A first they told me all my symptoms were from anxiety and depression (which I'm also diagnosed with), but I knew my body and my triggers and I knew my mental health wasn't the reason. I was severely itchy everywhere all the time and I would scratch to the point where I'd cause bruising, bleeding, extreme wounds in my skin, etc. I was constantly tired, sleeping 18+ hours a day; I was nausea pretty much 24/7; I urinated A LOT (even when I had little to no fluid); I was having muscle pain and spasms, I'd get confused, forgetful, and would sometimes dissociate for short periods of time; at one point, I lost all feeling in my right leg while driving because of lack of blood flow; my feet were constantly cold to the point where it would physically hurt; I had hot and cold flushes. The list went on and on. I got tested for autoimmune diseases like Lupus, I had multiple pregnancy tests done, I had heavy-duty blood tests done... And then after two years of dealing, and five doctors later, I visited a new doctor who looked at my symptoms, my tests, ordered basic blood work and finally I got my diagnosis. I got on iron tablets, had iron infusions, changed my diet, and now I only sometimes get flare-ups that are nowhere near as bad as they use to be. It was a very frustrating time, my whole entire life had to go on hold and I've spent the last two years trying to get back to where I was. My condition is nowhere near as long-term or severe as yours--or other people's--but I just wanted to share my story of a hidden illness that affects a lot of women around the world and can mask itself as many different things.
Not sure yet if I have Migraine or not because very confused and still learning about my condition.
I used to have headaches, unexplained and uninvited which would not stop. It used to feel like my brain is about to burst.
I also have motion sickness dur to which I ised to feel maybe the nausea is because of the same and I started slipping my breakfast in the morning before going to office so that I stop feeling nauseas, but that never helped.
I went to doctors multiple times who suggested different things each anf everytime, some advised that I am not eating healthy not enough proteins in my body , advised me to consume lots of electrols. And the most common reasons the doctors gave me was acidity.
Later when went to a neurologist, who suggested it might be IIH asked me to undergo several tests.
I had visuals and blurry vision at times, I also wear specs so that ophthalmologist advised me maybe because of my high number i have headache because there wasn't any issue with my eyes, the pressure was normal as per the opthalmologist. She just suspected a hole in my retina which can be treated by a laser surgery.
My MRI reports were normal.
Neurologist then suggested me to undergo Lumbar Puncture to check if the pressure was normal or not.
I scheduled an appointment for LP last week and as per the doctor the pressure was 20 which was normal high and they removed 5mm and doctor assured that i will feel better now as its also therapeutic.
I started having headache just after spinal tap was done. I used to feel sudden pressure in my head when i used to sit and it used yo go away when lying down. It used to feel like someone has kept a very heavy rock on my head and it might crush. Doctor suggested that it is very normal and happens generally after Lumber Puncture but it will go away within 24 hours.
I came home, i wasn't able to sleep because the pain was unbearable. I wasn't able to sit because my spine used to pain, i wasn't able to understand why its happening. I was taken to the hospital in emergency room, was given IV and discharged. I slept that night because of IV but again when i wokeup the other day, it felt like someone is crushing my jead and it might burst anytime which definitely made me anxious as i have never ever in my life have felt such kind of pain.
I was continuously crying, confused anxious about this whole situation.
I was taken to ER again they gave me IV again. I was hospitalized and MRI's (with and without contrast) vertactomy was done to ensure that it isn't CSF leakage. Thankfully it wasn't but the headache has worsened now. I have a stiff neck, i have severe pain on top of my head. I feel nauseous all the time. I get sweaty when the pain worsens. The doctors said I am thinking too much about it. Nothing has happened, i jist have an headache and it is very normal post Lumbar Puncture.
The doctor thought i am just exaggerating the situation and has prescribed antidepressants tablets, lungs tablets to control my breathing and seizure control tablets, which i am not sure if I should really consume or not.
I still have the same pain and its so frustrating when people around you treat you like you have depression as doctors advised. It gets more irritating because I am already in pain and people around me think that I am just making that all up. I am exaggerating the headache. It's not a normal headache that I have. Its definitely not in my head.
Your video is just so relatable, I still get chills thinking about the situation I was in last week.
Thankfully i am home now and i am definitely going to get a second opinion from another doctor before consuming anything.
I really wish if we could talk more about this....
My story bears similarities to yours. No POTS. Flying to Salt Lake City to see Dr. Dan Henry has been my saving grace. Google him!!
Oddly enough, before I found him, the one thing that put my chronic migraines on pause was undergoing IVF. Something about the massive change to the hormonal milieu.
I will definitely sleep much better after watching this video! So much to relate to. Thank you so much for that. Have you ever thought about clinical trials? I just signed up for one, I am so hoping they will take me.
Good morning! 👋🏻 saw your comment over on Cathrin Mannings video and decided to come on by! stunning content! Keep crushing it ❤️!
Thank you so much!!
I love your shirt in this video!!
Thank you for sharing your story. I felt so frustrated and it didn’t even happen to me. I’m so happy you were stubborn and persistent ♥️