MY CHRONIC MIGRAINE STORY // Symptom Onset, Migraine Tests, and Diagnosis

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Momming with Migraine

Momming with Migraine

Күн бұрын

Пікірлер: 328
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
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
@LoveAuntAshley
@LoveAuntAshley 3 жыл бұрын
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.
@chevaliedelareverie
@chevaliedelareverie 3 жыл бұрын
the "are you sure you're not making it up?" thing is I N F U R I A T I N G ! ! !
@tailorj1756
@tailorj1756 4 жыл бұрын
“Here i am, sitting on youtube, jobless and pregnant.” literally made me lol. i love your sense of humor
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
Haha, I appreciate that! I can be dry and sarcastic 😛
@LoveAuntAshley
@LoveAuntAshley 3 жыл бұрын
@@MommingwithMigraine Girl, the fun we'd have together. I'm the same way.
@michellehicks6898
@michellehicks6898 3 жыл бұрын
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
@valleygirlgg
@valleygirlgg 3 жыл бұрын
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
@michellehicks6898
@michellehicks6898 3 жыл бұрын
@@valleygirlgg I will definitely keep an eye on on it. Thanks
@heyu123
@heyu123 2 жыл бұрын
Jesus Christ that sounds bad :(
@bellab3102
@bellab3102 3 жыл бұрын
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
@SatumainenOlento
@SatumainenOlento 3 жыл бұрын
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!!!
@Seamstressed
@Seamstressed 3 жыл бұрын
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.
@yanasosnovskaya864
@yanasosnovskaya864 3 жыл бұрын
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.
@Glitteryglows
@Glitteryglows 3 жыл бұрын
He clearly didnt know what he was talking about. Migraines can last that long.
@fujoshipeanut5074
@fujoshipeanut5074 2 жыл бұрын
That's ridiculous, even most average doctors know that average migraines can last to up to 3 days
@rikkihurt
@rikkihurt 3 жыл бұрын
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!
@keagank9414
@keagank9414 3 жыл бұрын
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!
@siobhanhenry9094
@siobhanhenry9094 3 жыл бұрын
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
@rikkihurt
@rikkihurt 3 жыл бұрын
@@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.
@ericasilvernail988
@ericasilvernail988 3 жыл бұрын
I'm crying too! I just commented the same thing. Living like this is so lonely especially when no one is helping you
@samano7646
@samano7646 3 жыл бұрын
Have you tried IV Ketamine treatment?
@magickalpreppers3578
@magickalpreppers3578 Жыл бұрын
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.
@MeowMeowKapow
@MeowMeowKapow 3 жыл бұрын
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.
@blueskittlezzzzzzz
@blueskittlezzzzzzz 2 жыл бұрын
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.
@brittanyshearer541
@brittanyshearer541 3 жыл бұрын
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
@brittanyshearer541
@brittanyshearer541 3 жыл бұрын
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.
@lizbellydance
@lizbellydance 3 жыл бұрын
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 🙏🏻❤️
@summerorta7354
@summerorta7354 3 жыл бұрын
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.
@sabrinagoldberger2692
@sabrinagoldberger2692 3 жыл бұрын
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
@ilqar887
@ilqar887 3 жыл бұрын
What is a piercing
@jemmah4723
@jemmah4723 3 жыл бұрын
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.
@Angiii98
@Angiii98 3 жыл бұрын
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!
@demitra43
@demitra43 3 жыл бұрын
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.
@townbythetown
@townbythetown 3 жыл бұрын
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?
@alexiahahah
@alexiahahah 3 жыл бұрын
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.
@sallyhinkebein257
@sallyhinkebein257 3 жыл бұрын
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.
@misscole82
@misscole82 4 жыл бұрын
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.
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
You're so welcome. Thank you for taking the time to let me know that the content is helping out.
@terryirwin2232
@terryirwin2232 3 жыл бұрын
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!
@mada-ms5ne
@mada-ms5ne 3 жыл бұрын
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
@mika4670
@mika4670 3 жыл бұрын
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
@camillethompson6686
@camillethompson6686 3 жыл бұрын
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.
@fionamochar-collins5493
@fionamochar-collins5493 3 жыл бұрын
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!!
@alexandramay6337
@alexandramay6337 3 жыл бұрын
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 💜
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
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! 💜
@chronically.advocating
@chronically.advocating 3 жыл бұрын
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.
@SatumainenOlento
@SatumainenOlento 3 жыл бұрын
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.
@terrahbruner
@terrahbruner 3 жыл бұрын
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.
@mado11373
@mado11373 3 жыл бұрын
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.
@owencook5982
@owencook5982 4 жыл бұрын
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
@abbywaldon6251
@abbywaldon6251 3 жыл бұрын
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.
@pattieknight7976
@pattieknight7976 3 жыл бұрын
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
@dellazorro
@dellazorro 3 жыл бұрын
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.
@Salai_Dante
@Salai_Dante 3 жыл бұрын
I get that too now :( Plus I get vertigo Are you taking anything to prevent the migraines ?
@dellazorro
@dellazorro 3 жыл бұрын
@@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
@dellazorro
@dellazorro 3 жыл бұрын
@@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
@binglemarie42
@binglemarie42 3 жыл бұрын
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.
@ayianaramirez2688
@ayianaramirez2688 3 жыл бұрын
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?
@wenrocks
@wenrocks 3 жыл бұрын
A don't ever comment on videos and I don't even know why I never thought about checking out migraine on KZbin, 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!!!
@ericasilvernail988
@ericasilvernail988 3 жыл бұрын
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
@TiredMomma
@TiredMomma Жыл бұрын
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.
@XianeXeee
@XianeXeee 4 ай бұрын
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🙏
@brittanyshearer541
@brittanyshearer541 3 жыл бұрын
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.
@dbrewer53
@dbrewer53 Жыл бұрын
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
@outsideaglass
@outsideaglass 2 жыл бұрын
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. :)
@cassarole2057
@cassarole2057 4 жыл бұрын
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!
@callabeth258
@callabeth258 3 жыл бұрын
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.
@toritabacchi7160
@toritabacchi7160 4 жыл бұрын
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.
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
Glad it was helpful!
@kkenzie771
@kkenzie771 3 жыл бұрын
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 KZbin 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!🤗😇
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
Thank you so so much for the kind words 🙏 ❤ welcome!!!
@marakaiser164
@marakaiser164 3 жыл бұрын
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
@SarahSmiles4u
@SarahSmiles4u 3 жыл бұрын
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.😉✌
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
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!!!
@kevinlawson9628
@kevinlawson9628 4 жыл бұрын
Years after my two brain surgeries although they say that is a sign of a tumor or a bleed on the brain
@EaglemaskJayfeather
@EaglemaskJayfeather 4 жыл бұрын
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
@KrimsonGRD
@KrimsonGRD 4 жыл бұрын
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.
@theitchyzebra8206
@theitchyzebra8206 4 жыл бұрын
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.
@torioriorio1998
@torioriorio1998 4 жыл бұрын
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. 💜
@madmigraineur3815
@madmigraineur3815 3 жыл бұрын
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 ❤️
@kellyevans390
@kellyevans390 4 жыл бұрын
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.
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
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.
@ButterfliBabiie
@ButterfliBabiie 3 жыл бұрын
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.
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
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.
@ButterfliBabiie
@ButterfliBabiie 3 жыл бұрын
@@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.
@bogisianec
@bogisianec 3 жыл бұрын
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.
@miizcaro88
@miizcaro88 3 жыл бұрын
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
@mazesmith796
@mazesmith796 3 жыл бұрын
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
@tracyjones9104
@tracyjones9104 Жыл бұрын
Thank you for sharing! So much of what you shared is exactly how I feel now.
@Spirochete830
@Spirochete830 3 жыл бұрын
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.
@SatumainenOlento
@SatumainenOlento 3 жыл бұрын
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 💕💖💕💖💕
@adriannajensen9576
@adriannajensen9576 3 жыл бұрын
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 🙏
@topbarequine4017
@topbarequine4017 3 жыл бұрын
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!
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
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 💜
@brandibuckley171
@brandibuckley171 3 жыл бұрын
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.
@missstella8398
@missstella8398 Жыл бұрын
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.
@taiweannoona1204
@taiweannoona1204 3 жыл бұрын
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❤️❤️❤️
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
I am so, SO happy my content has helped you. Sincerely. I'm speechless. Thanks for sending love 💘
@jennifergay8734
@jennifergay8734 3 жыл бұрын
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 🥰
@keybladewizard49
@keybladewizard49 3 жыл бұрын
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)
@dopattier
@dopattier 3 жыл бұрын
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.
@lilymuseic9662
@lilymuseic9662 3 жыл бұрын
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!
@jessayaki9496
@jessayaki9496 3 жыл бұрын
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.
@samilamby
@samilamby 3 жыл бұрын
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.
@annapendergrass7258
@annapendergrass7258 3 жыл бұрын
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 🤞🏻
@Truerealism747
@Truerealism747 11 ай бұрын
What are your symptoms of ms I have migraine fybromyalgia symptoms 24/7 just lost my mum to severe ms
@Amanda---
@Amanda--- 3 жыл бұрын
*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
@ethereallala999
@ethereallala999 2 жыл бұрын
Thank you for taking the time to tell your story and speak on this disease 💜 #migrainewarrior
@singingrazors
@singingrazors 3 жыл бұрын
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
@jtjc7705
@jtjc7705 3 жыл бұрын
"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!
@franlats0705
@franlats0705 3 жыл бұрын
With the studio light comment you made, ate they fluorescent lights? They flicker even tho you can't see it and trigger my migraines xx
@emilyanderson8616
@emilyanderson8616 Ай бұрын
Great video. Thank you
@pen6666
@pen6666 3 жыл бұрын
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.
@catalinarodriguez7099
@catalinarodriguez7099 3 жыл бұрын
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)
@thehopefulheliophile
@thehopefulheliophile 3 жыл бұрын
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.
@Whateverhasbeenmynameforyears
@Whateverhasbeenmynameforyears 3 жыл бұрын
You should put the migraine research link to donate in your descriptions. :)
@carocurioso8385
@carocurioso8385 3 жыл бұрын
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.🙈
@AndreaBearyAndreStein
@AndreaBearyAndreStein 3 жыл бұрын
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 😟
@carocurioso8385
@carocurioso8385 3 жыл бұрын
@@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!
@AndreaBearyAndreStein
@AndreaBearyAndreStein 3 жыл бұрын
@@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!
@carocurioso8385
@carocurioso8385 3 жыл бұрын
@@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.
@colleenlynn5721
@colleenlynn5721 3 жыл бұрын
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!!!
@capetownchicklet14
@capetownchicklet14 4 жыл бұрын
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!!!
@torioriorio1998
@torioriorio1998 4 жыл бұрын
"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. 🙈
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
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...
@torioriorio1998
@torioriorio1998 4 жыл бұрын
@@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!
@lenagoodwin8223
@lenagoodwin8223 3 жыл бұрын
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...
@sikorka9009
@sikorka9009 3 жыл бұрын
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.
@cfield1468
@cfield1468 2 ай бұрын
This was really helpful thank you
@cooper5626
@cooper5626 3 жыл бұрын
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.
@Truerealism747
@Truerealism747 21 күн бұрын
How are you now.mines daily but neck and shoulder s now not in head
@karlageiszler4278
@karlageiszler4278 3 жыл бұрын
Thank you for your courage to share with us. I have been so scared with my recent symptoms and you give me hope.
@caseyslifewithcp3727
@caseyslifewithcp3727 3 жыл бұрын
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
@Jelleybean18
@Jelleybean18 3 жыл бұрын
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 ♥️
@lostafterforty6732
@lostafterforty6732 3 жыл бұрын
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.
@reviewunboxinges3228
@reviewunboxinges3228 3 жыл бұрын
Me too I have severe migraine mitral valve regurgitation and aorta mal function and AFIB.
@AngieNTheComettes
@AngieNTheComettes 3 жыл бұрын
Hello! Recently I've found Your channel and I really like Your videos - they've inspired me to look for even more with the service dogs! Such a precious animals! I wish I haven't lived in a tiny flat and that in Poland the service dogs were more common - I've been suffering from migraine and panic attacks (with the risk of fainting 'cause it gets dark in front of my eyes - luckily I remember now to lay down and put my legs up) myself, and it would be awesome to have somebody nearby all the time ('cause my family can't watch me 24/7). However I don't get them daily, I may have just one in a couple months, but they're still scary as heck! One doctor told me that there are special injections that make the number of migraine attacks smaller, but there's no refund sadly...
@peachiichiba7903
@peachiichiba7903 3 жыл бұрын
I'm SO GLAD I saw this before taking topomax
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
It can be a life saver if it works out for you. For some people it's a miracle drug!
@katzs44
@katzs44 3 жыл бұрын
@@MommingwithMigraine it’s definitely a lifesaver for me (in combination with Botox). I get virtually no side effects from it (slight tingling) which disappeared with the XR version. As someone who was dealing with 30 attack days a month, the drug was a miracle. That said, I know so many who have had awful responses! The biggest thing I’ve learned in my journey thus far is to be my own advocate. And everyone reacts differently!
@ChronicallyAnwesha
@ChronicallyAnwesha 6 ай бұрын
😢Sending pain free days to you❤
@MommingwithMigraine
@MommingwithMigraine 6 ай бұрын
I appreciate it so much!! Right back at ya
@frankiepez4470
@frankiepez4470 2 жыл бұрын
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
@Lindseyisloony
@Lindseyisloony 3 жыл бұрын
If anybody is questioning the story of her doctors refusing to take her seriously I can confirm that that is EXACTLY what bay area medical care is like. We have all the most advanced technology and so many kinds of specialists but ONLY the most wealthy people with top insurance receive appropriately attentive care. I'm 30 and have been trying to get doctors to make an effort to identify and treat my chronic illness. My parents tried to do the same when I was a child and had no luck. Doctors refused (and still refuse) to make more effort than blood tests. Being chronically ill without anybody ever understanding has left me with a lot of mental health issues. I've been treated SO BADLY for so long by medical doctors and mental health "professionals" that I recently made a deal with myself. If I endure one more year and still don't receive any kind of help I get to give up and stop. People act like it must be my fault that I can't get diagnosed or that I must not really have a problem no matter how much or how little effort I'm making. That I can't change, but I can stop putting myself through the complete torture of endlessly begging for help that at this point it seems clear I'm never going to get. It's become literally traumatic at this point. I'm happy that in your case you did finally get help and have been able to work out a system for coping with what you have! Thanks for sharing your story!
@theshinythings123
@theshinythings123 3 жыл бұрын
I live in the bay area and nothing to do with where I live, but I legit got some brain damage after ssris and when I searched up my symptoms it's matched up perfectly with serotonin poisoning. The biggest thing I lost was the ability to make mental images. Logically it's makes so much sense that a drug that increases a neurotransmitter like every illegal drug out there would be dangerous, but I didn't figure that out until after obviously. I can't do anything even though I can literally match the side effects I have with published papers because doctors are never going to admit a drug they prescribe is bad and most drugs are funded by drug companies. So it's literally impossible for me to have evidence.
@theshinythings123
@theshinythings123 3 жыл бұрын
Another thing is people really need to watch their back when it comes to healthcare because being a doctor is a profession where you literally can have no consequences for being bad. It's just how science is set up. You can't punish someone for being unable to solve something super complex, but at the same time there is nothing like other jobs, including most other healthcare professions, where if you are consistently bad at helping patients anything happens that forces them to be better.
@thatone_daniel
@thatone_daniel 4 жыл бұрын
Good morning! 👋🏻 saw your comment over on Cathrin Mannings video and decided to come on by! stunning content! Keep crushing it ❤️!
@MommingwithMigraine
@MommingwithMigraine 4 жыл бұрын
Thank you so much!!
@danayager
@danayager 3 жыл бұрын
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!
@CloverRose
@CloverRose 3 жыл бұрын
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
@jobrownsmith116
@jobrownsmith116 3 жыл бұрын
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.
@hannahmclaren9672
@hannahmclaren9672 3 жыл бұрын
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
@rebeccaclavette2329
@rebeccaclavette2329 3 жыл бұрын
Thanks for making your channel! Have had migraines for the last 14 years. Mine just started like yours.. just pain and then in the last 4 years they’ve changed. Glad I’m not crazy!! Trying new meds now.. 🤞🏻
@Truerealism747
@Truerealism747 3 ай бұрын
How have they changed mine are chronic in body now no headache
@firesoftheasylum7890
@firesoftheasylum7890 3 жыл бұрын
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.
@MommingwithMigraine
@MommingwithMigraine 3 жыл бұрын
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!
@firesoftheasylum7890
@firesoftheasylum7890 3 жыл бұрын
@@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.
@dawmarnold5795
@dawmarnold5795 3 жыл бұрын
This is a really informative video and I wantbto thank you for making it
@virginiawhitmire3100
@virginiawhitmire3100 3 жыл бұрын
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 !!!!!
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