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Life with Neurofibromatosis and Chronic Migraines | Health Update

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A video on my life with Neurofibromatosis type 1 (nf1) and chronic migraines, trying botox treatment, as well as an update about my diagnosis of pseudotumor cerebri. - â open for more! â -
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If you'd like to help me continue to make videos, please consider supporting me on Patreon: / lilymeade
I know I might have scared you a bit with my Pseudotumor Cerebri video. Out of context, it seems like a very scary thing. It is, but I'm not really a stranger to seriously intense migraines and chronic pain. Neurofibromatosis is a genetic condition I've had since birth, so I have a lot of experience with it.
My videos on this channel are still mainly books, writing, and general fun stuff. I wanted to make this video for anyone out there who is scared about their own diagnosis or for anyone who wants to learn more.
I also believe that disability should not be so stigmatized, so it is important to show that my health may limit me somewhat, but I am still able to live an awesome life. Chronic pain or disabilities of any sort are just a limitation, they don't define a person.
Anyway, I hope you enjoyed or learned something from this video and I hope you stick around for more videos! Thanks for watching!
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My name is Lily Meade. I love books! I like to live a life inspired by fiction. I truly believe that anyone can find their own happy ending, whether in a book or in real life. I am an aspiring young adult author. I absolutely love to read (especially YA fiction, but I read adult and nonfiction, too!) and write (novels mostly). I really love storytelling in any form.
On my channel you will find a variety of videos about my life, writing (including writing updates as well as tips and tricks), novel research, book recommendations, and more! Iâ m passionate about a lot of things and I like making friends. Thank you for watching my videos! Please say hello!
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Lily Meade
P.O. BOX #98104
Lakewood, WA 98496

Опубликовано:

5 сен 2024

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Комментарии : 178

@wheezy_mads 7 лет назад

I also have neurofibromatosis, I enjoyed this video a lot because not many other people actually understand what it is like to have it.

@makennasnyder9206 6 лет назад

Maddie I have it as well! It’s very rare, but it’s good to know there are other people out in the world who also have it

@spookymeg 5 лет назад

I have it too and as far as I know, I'm the only one from my secondary school and my college with it, so it's been really hard to talk about it

@madsjads7374 5 лет назад

I also have it too and I hate how many café au lait marks I have

@directionermailk 4 года назад

Same here

@gigiwoodlawn2142 3 года назад

I have it too and it causes me so much anxiety

@bamsingha8593 6 лет назад

I have NF1 and I’m 16 ❤️❤️ and I break down and cry a lot knowing I’m so unique bc people make fun of me, and I’m not ashamed of what I have xx because there’s nothing I can do to change what I have, so this is my life now xx but I have no hope for the future 😞💕 stay strong girl 😘

@Pj-qi3rj 3 года назад

I do to I have a tumor on my optic nerve and I could go blind from it if it grows

@Flacotatin 3 года назад

Hey Bam. I live in Sydney Australia and I also have NF1. Growing up school wasn't fun people I shared class with would scream out, "I am not an animal" during roll call, even the teacher would laugh. Looking back I guess that's why my grades were so appalling. But somehow you stay strong and hold onto the good memories and don't let the bad get you down. I am 48 years old now, I have a good paying job, I have a daughter that doesn't have NF1 and a rock of a wife that no matter what health problems I have she is in my corner.

@sapendradhital6474 2 года назад

Stay strong girl i do have neurofibroma and migrain as well but still im an actoe in nepal forget about it think like you dint have any of those you will be good ❤

@lorenzpacana7898 2 года назад

Hi! I have a suggestion to liquefy neurofibromatosis lumps. Keep eating papaya fruit everyday, don't stop . Papaya liquefies cancer cells or tumors that is why it is used as meat tenderizer. Cancer cells /tumors don't have mechanism for repair or heal, it is just uncontrolled growth. Papaya don't affect healthy cells. My teacher had 3 breast lumps and they disappeared because she ate papaya for 3 months, she told us in class. If you don't believe me, google papaya cure cancer. I know its not cancer but it is tumor so is uncontrolled growth. Papaya just might liquefy the lumps so they'll disappear. I hope you try, you have nothing to lose , just all the lumps. My goal is to spread this advice to as many people with neurofibromatosis as i can because it saddens me to look at them. I hope my advice works, I don't have neurofibroma but I get desperate just looking at them.

@lorenzpacana7898 2 года назад

@chandlerapplegate9680 5 лет назад

I'm 24 with NF1 and suffer from chronic migraines. I got my migraines under control with the help of a neurologist. We have a much higher level of pain tolerance than the normal humans. We are warriors! Stay strong sister, much love and peace.

@ScottSullivanTV 7 лет назад

I have it neurofibromatosis, too. My tumor is located in my brain, so I get migraines a lot. I also suffer from a speech disorder, and I really hate myself for it. It's hard not to get depressed.

@vanessalizette 7 лет назад

You're beautiful girl! I have NF1 too (: keep your head up (:

@saulitotorres2062 7 лет назад

Vanessa Garcia me 2 no lie

@2princessPrince 6 лет назад

Vanessa Garcia me 2

@bamsingha8593 6 лет назад

Vanessa Garcia aww, bless you, I have NF1 too, I’m 16 ❤️❤️ stay strong x

@lovinggirl2817 6 лет назад

Vanessa Garcia me too

@alexramirez3684 6 лет назад

My son and I have NF 1 ❤️❤️❤️❤️❤️

@dopeychicken720 7 лет назад

I have nf1 and it's getting better I have to visit doc every 2 years now can everyone please pray for me please

@marcyallison5996 5 лет назад

How are you getting better?

@miaparra8726 6 лет назад

I also have NF I’m 13 and I know how you feel just keep strong you are Beautiful

@yeseniatinajero4196 6 лет назад

the weird kid I have nf1 and I’m 13 too

@derpychipmunk2089 6 лет назад

the weird kid I have nf and I'm 14 and I'm rlly scared to get those tumors and since they can sometimes be Canerous that scares me as well

@krislindsay7219 7 лет назад

Thank you for sharing your story. I wasn't diagnosed until I was in my 40's.....sad but true. I also have the headaches, and am now on disability. It was difficult working all those years, not knowing what was wrong with me. People thought I was just lazy, my doctors couldn't figure out what was wrong, and even (I think) thought it was all in my head. It wasn't until I went in for shoulder surgery that a doctor finally recognized the symptoms and spots as NF1.

@LilyMeadeBooks 7 лет назад

+Kris Lindsay It's so frustrating when you know something is wrong but no one takes you seriously.

@havefaithinyourselfluke785 6 лет назад

My kids also have it to I always wanted to meet other people like me who can understand we are normal just a little different but in our own beautiful way

@your_fav_girl_called_lilly Год назад

I have NF1. And the way I found out is crazy. So when I was 12, I had a lot of headaches and due to that I missed school so I had to get a doctors note. The doctor suddenly tells me to do an eye test. So with my mom I find out that I cant see out of my right eye. The next day I was sent to the eye doctor. The eye doctor sent us to a paediatrician. The paediatrician tells us that I have NF1. I was born and raised till 9 in the USA and moved to Bulgaria. So we start doing MRI and we find out that I have a tumor on my optic nerve. I wear glasses now and I don’t have headaches that often. I just got back from CHOP-Children’s Hospital of Philly. It is one of the best centres for this. I don’t see much things and I don’t find nothing about it. This really helped me on what to do and what not to do

@deecee90. 3 года назад

My son may have NF1 and hearing stories like yours helps show me how it affects others differently. Thank you for sharing.

@celtichound9889 2 года назад

@Dee if you're interested in it, there's Facebook groups for people with and the parents of children with Neurofibromatosis.

@kiplynnmegee999 6 лет назад

id like to say that i also have Neurofibromatosis, i have type 1 and i suffer allot with back pain from it since ive had a tumour grow on my back twice causing me to have a slight curvature of the spine, i am currently 19 and constantly having back pain if i stand sit or lay down for a certain amount of time. and seeing this video just makes me so happy to know im not the only one suffering from this. i hope you are dealing well now.

@ImaniGabrielle 7 лет назад

I have NF as well!

@csbaby1620 2 года назад

My father, my daughter and I all have NF1 thank you for sharing your story.

@keithought4994 6 лет назад

I have NF1 as well as my mother. She is my hero. Stay encouraged

@CurryRice19 6 лет назад

I have NF type 1 too. Its painful but its great to see people talking openly about it.

@alexispadgett8807 7 лет назад

I have Nf1 it's taught me a lot about life! If you ever need anything I'm here!!!

@clarracuda 6 лет назад

thank you for sharing your story. i feel less alone after watching this because i deal with constant migraines and other pains in my body as well. i'm inspired by the new methods you're trying to feel better. i'm in the process of applying for jobs and hoping i can find an employer who can work with and understand my NF1! :)

@LilyMeadeBooks 6 лет назад

I wish you good luck! Stay strong!

@DEMETRIUSblaze 6 лет назад

glad your okay stress with this condition it's hard stay strong and being the light of the world Princess of hope

@whatshereads1 Год назад

She’s a lucky one I have all of it the birth marks and freckles, the tumors, and the chronic migraines and backaches.

@mariahr6053 3 года назад

Hi! I've been looking for people who have similar symptoms to me, im glad i found your channel! Thanks for posting!!!

@jasminechloe1057 7 лет назад

I have neurofibromas too I'm 17 and from Australia, last year I had deep brain surgery to remove a brain tumour that was fast growing 4 years before that I did chemotherapy to stop my optic nerve Tumour from growing I did chemo for a year they couldn't remove the Tumour or I'd lose my sight it was affecting my colour vision atm I have hundreds of the cafè spots all over me and I'm now getting more and more plexiform neurofibroams I recently had a full body MRI to see how many there actually are under my skin I also have slight scoliosis of the spine and I'm always having headaches, I only know family who have neurofibromas as I inherited it if anyone would like to talk I'd really like that idk if anyone will see this comment but I hope sharing part of my story will help idk

@cathyq3834 7 лет назад

Jasmine Chloe hey I have it and I am from Australia too want to talk?

@sarachurchill1749 7 лет назад

Jasmine Chloe do you Facebook i live in Australia too and would love to chat

@kiplynnmegee999 6 лет назад

hey Jasmine, i know this comment it a bit late, but i too am from Australia and suffering from NF, and we dont have a big age gap, so im always open if you wanna talk

@huma6434 3 года назад

Hey I want to talk with this please. I really need help

@bobmikey5892 3 года назад

@@huma6434me too

@Joliv0 6 лет назад

Thank you for sharing you've spoken on Twitter about migraines but it was nice to see the video. Good luck on the Botox injections, I wish I had insurance I'd love to try it

@irianacorona9993 5 лет назад

I also have Nf1. I used always have migraines, I went to get an MRI when I was ten and found out I had a tumor. Best of luck to you :)

@wasembeck 6 лет назад

Wow, I'm so glad I stumbled across your video! I also have NF1 where my range of arm motion is very limited. I was diagnosed after what felt like a pinched nerve near my shoulder blade. I function well however, easy tasks are super hard. I'm managing ok but I realize that I also need to make a lifestyle change to build up my upper arm strength. Thanks for sharing your experience!

@directionermailk 4 года назад

I also have NF1 and I also don't have the big tumor, thank God. I only have a very big "lump" in my right arm. I was mocked when I was a kid and that really hurt me but I found today your channel and someone to relate

@hendhanooda1926 3 года назад

Hello could you tell me please How old are you ? I have also Nf1 I have a lot of brown spots on my body , a little on my face also I have a big ono on my left arm as you .. but I don't have any tumors

@directionermailk 3 года назад

@@hendhanooda1926 20. I was diagnose when I was 10. I don't have any tumors also, which is good. I am the only case in my family

@neerja5163 5 лет назад

I also have Neurofibromatosis type 1 . I grew a couple of tumors .Because of NF1 I grew 2 cancerous brain tumors causing me to develop hydrocephalus. I'm happy you dont have to deal with that.

@carly8287 7 лет назад

I have NF1 as well!!!!! I have never met someone with it I have a stable brain tumor.

@amandaoroberts 6 лет назад

I've got NF1 too! Something I've hate working with migraines and headaches have always been a thing for them too (just figuring out some of the triggers for them the past year) sending lots of love and hopefully the Botox injections help

@LilyMeadeBooks 6 лет назад

It's such a process, ugh. I hope you find some relief. I noticed that cigarette smoke, perfumes, caffeine, and alcohol are all definitely triggers for me.

@jenneyryan1083 6 лет назад

I enjoy your story and am learning so much from your story. God bless your life and strong attitude.

@scotttaylor5596 8 лет назад

I also have nf1 and suffer from chronic pain, back and knees not migraines. I also have issues with fatigue, after an 8 hour work day I can't do much else. It can be difficult to manage a normal life, but I've found ways to make it work.

@LilyMeadeBooks 8 лет назад

I have HUGE problems with fatigue. I get tired so easily. I'm glad you've found a balance, that seems to be the hardest thing.

@dannymitchell2736 6 лет назад

I have NF1 as well, (you are beautiful btw), I didn’t realize that migraines were associated. It’s good to hear because I was realizing that I was having them daily. Aside from that I’m attempting to handle the tumors and pain with surgeries (for cosmetic & pain reasons.) Looking to work with Dr. Andre Panossian within the next year, my only concern outside of myself is hoping that my children don’t have to deal with it, it was spontaneous genetic mutation for me.

@charrolivia 7 лет назад

I have NF and suffered really bad with migraines especially when I was at school, tried 100's meditation for them and found one that works, it would be great to be able to connect with people with NF

@ml_soccer4234 7 лет назад

I have neurofibromatosis and I have five different curves on my back from scoliosis I have tumors multiple tumors up and down my spine up-and-down and my neck I have them everywhere so some people are lucky with this condition is up with Bill I don't really suffer from that many migraines but I do have them it's great to know someone else has this condition

@LilyMeadeBooks 7 лет назад

Yeah, my brother has NF too but he barely has any migraines at all and no tumors or spine curvatures. Some people barely have any symptoms and others get them all. It's sort of unpredictable.

@katiesmith7900 5 лет назад

I really agree with your opinion on the pain 1-10 thing, I hate having to do that, for me like a 5 is bad but ppl don’t understand that because it’s all comparative to your worst pain which for me was REALLY bad. Anyway 8m glad it’s not just me that struggles with that

@ericjustasinner5695 6 лет назад

I have NF1 as well born with it too.

@roselewis1426 2 года назад

Thankyou, gives more insight to my baby with NF1.

@cathyq3834 7 лет назад

I have migraines too they are so annoying :"( but not that often yet. I am so scared it's going to get worse

@DEMETRIUSblaze 6 лет назад

my side affects outta control reflexes at times and self critical anxiety

@cherl3738 Год назад

My son and grandaughter have NF. She was having headaches and found out that she has a brain tumor. Not cancer and it's being monitored.

@lovinggirl2817 6 лет назад

I have nf1

@DEMETRIUSblaze 6 лет назад

Your tough I know I have same condition born at birth diagnosed age had three surgeries upper spine, lower spine, and my area over my tights lost movement of legs without a walker a while physical therapy brought back my quadricep muscle

@newkool100 5 лет назад

Thanks for the share. I also have NF1 and at times I get headaches. Some times for no reason and many times they get triggered by sudden sharp noises, like some body honking, slamming doors, yelling and screaming.

@sarah-fm5wf 7 лет назад

I have this too i feel like nobody will ever love me 😓

@brunocaramel5824 4 года назад

Thank you so much for this. I just found out a friend has it and I’m trying to learn how to best give him support. Are there any resources you’d recommend or other stories I can look up?

@nokturnna83 3 года назад

Where do you live? I live in UK and the best specialists in the country are in Guys Hospital in London.

@AuthorRahsaanAli Год назад

I have Nf1. I've never dealt with the migraines but am epileptic and have the bumps.

@JCarterTV1 5 лет назад

I have NF1 too, and yes I get these wild headaches also

@jenniferobrien8094 7 лет назад

I have NF2

@bobbyharris6582 4 года назад

Same here.. it sucks

@queenthoria7483 6 лет назад

I have nf1 too. I was diagnosed when I was about 11 I think. The worst 'bump' I have is on my bum, so it hurts a lot when I sit for more than a couple hours. Really sucks when I have those 4 hour classes lol

@bobbinslynn16 5 лет назад

Yes I have Neurofibromatosis also and the migraines sucks

@lesley-annesmith8552 2 года назад

I have neurofibromatosis I suffer from bad migraines bad backs I would say I have it mild xxxx

@MissWitchCeleste 6 лет назад

I have nf as well. Did not find out until I was 25 almost 26 last year. I had a surgery to remove spinal cord tumors. I also suffer from Migraines

@MadMaz1983 7 лет назад

There's been a lot of success in stopping migraines with an ear piercing in a specific place (think acupuncture but a constant benefit), could be worth looking into :) Best wishes

@paulsgirl28r80 7 лет назад

I have NF type one! I'm luck like u I have three inoperable brain tumours and I have fibroma you rock girl

@avocadolover9207 7 лет назад

I have NF1 too

@chrisgomez1840 5 лет назад

I have NF1 so I know how it feels.My neurologist sets an appointment for every 6 months for an MRI.i believe becuz of this i was in the Special Education classes. My bones are also fragile im always getting hurt

@chrismaffei4214 2 года назад

I also suffer with neurofibromatosis type one suffer with bad migraines and back pain and hurts to walk sometimes so I suffer with depression and anxiety and no pain pills just a little medical marijuana when I’m able to get it

@eduardodiaz1017 7 месяцев назад

Please take a herb called Ashwaganda it will help you to be relaxing and your body to, all my Blessings ❤

@mwr0585 Год назад

I have NF Yup migraine’s suck I have a tumor on my spine and one on a nerve on my shoulder and of course a few on my brain. I guess my parents found out when I was 6 I’ve got little bumps and cafala sp spots

@SetoKaiba951 2 года назад

I have type 1. But I was unlucky and I still have speaking problem. And I have tumors all over me.

@annawarwick5582 6 лет назад

I have NF1 and I know the pain all to well. Im currently going through my 4th set of braces because of my soft gum tissue and a tumor grew in my mouth and its rough

@ReemThearab 4 года назад

I have NF1 and suffer from migraines too.

@dubay42 6 лет назад

get your "Daith"' pierced and it will help with your migraines it really works

@Timpson1994 8 лет назад

I have neurofibromatosis and I have migraines

@thomasclancy3227 2 года назад

I also have NF1 it's all over my body the headaches are horrific and I can't find anything that helps

@genevievefisher3779 6 лет назад

Now I get it I get really bad migraines almost 3 or time a week my sister has NF1 so I went to children’s hospital of Philadelphia for my migraines now I need to get tested for NF1 and I need to get a brain MRI my migraines dr said

@leahlichtenstein8319 5 лет назад

I have nf 1 and I just found a new tumor in my brain, it’s not pressing on anything but it still sucks because I can kind of feel it

@kaetlynnnewland7381 8 лет назад

I have neurofibromatosis as well.

@katrinawilson5119 7 лет назад

I have it too as do members of my family it causes pain headaches I have slot of tumors I'm blind in my right eye and NF has affected my face in so ashamed I'm sooo ugly I get stares and whispers in 51 my esteem is Very low

@Batticia 7 лет назад

I hate it when someone who has neurofibromatosis and have less or no tumor at all brag about it . It just like saying or acting better then others who has many moles

@LilyMeadeBooks 7 лет назад

I'm not bragging about having a genetic disease? Just because I warned people who might casually google NF without knowing the separate types that mine is the less severe one doesn't mean that I think I'm better than people who do have the severe case. My viewers care about me and I don't think it's fair to lead them to worry about symptoms I don't have. Both forms of NF are damaging and just because I don't have any malignant tumors does not mean the ones I do have don't cause pain or problems in my day to day life. I have an entire series on this channel about how my health has a massive impact on my life. I have never once said that I feel superior to people suffering worse than I have.

@mosiahporras4379 Год назад

Hi Lily have you seen in your own experience what type of weather or climate affects your symptoms either in a positive or negative way ?

@westbroadwaylyrics1256 7 лет назад

I have nf1 too. I get serious back pain. I don't have it bad. I have a plexiform neurofibroma on my side. I also have a cafe au lait patch on my arm. before I told people what the condition Is a group of girls have said I have ringworm which is still circulating round the year group.

@alexramirez3684 6 лет назад

My son and I have NF1❤️❤️❤️❤️

@James66662 3 года назад

I have NF1 , I have lots of tumor growths , its very depressing , i have gone for 4 surgeries this far to try and remove lumps

@hannetarfa7592 3 года назад

I have NF1,I have gone for 5 surgeries,it is back now,it is so painful.I can't sleep.

@Jets1997 7 лет назад

I have NF1 too and constant headaches..

@diegoboesch4658 4 года назад

I to have NF I HAVE the pumps on my arms,and I hate going out in public.

@justfunsize 6 лет назад

I have NF1 as well...

@xxtaurusladyxx 5 лет назад

I also have NF

@raphaelo.asiwaju3599 6 лет назад

hi, I also have NF1 and am 46

@TheTarrMan 7 лет назад

I have NF Type 1 too. Stupid question but how are your teeth? The reason I ask is mine were awful but I got dentures recently now I only get one or two a week and I normally can sleep them off. Sorry to say but the tumors you see from pictures online normally come later in life. I'm 29 now and already see my face covered with tiny ones. I recently cut a tumor about the size of a pea off the middle of my forehead with an x-acto blade because even Hindu's were looking at me weird with it.

@brookewatson3984 7 лет назад

i have Nf1 and i have 3 brain tumors and migraine

@mandabennett2809 2 года назад

NF & Botox tried & 😞💫😇 Botox didn't work to or me but I'm.trying to fight on

@arnabbiswas9461 3 года назад

My Newrofribama problem titmant please help me

@Pixeldragonproductions 6 лет назад

Omg thank u , I know all about this I have it and I got a tumor on spinal cord and made me have scoliosis and I have 14 back surgeries including spinal Fusion and then I have a BUNCH in my baxk

@jcbarnett2973 4 года назад

Plz respond toe i need answers

@theanimalkeaper 7 лет назад

I have it too

@s.a2954 7 лет назад

You are an amazing female I also have nf1 it caused me to have over 10 operations

@eddi3bac0n52 6 лет назад

I have the same thing. I got a big middle finger from it. I hate it. I feel everything. I also get tattoos. Nf1. I have the six cafe' colored spots. Knots all over. And my foreheqd. I am born a freak.

@pallavipatra2227 7 лет назад

I have. nf 1

@deveshthakur7517 2 года назад

I also have NF 1

@ConfusedGirlButSmartDude 6 лет назад

AYY! NF1 buddies!

@ConfusedGirlButSmartDude 6 лет назад

Unfortunately I have a massive Tumour that spans across my neck, right shoulder, my chest, and on my face whoops

@callmekiwi7687 6 лет назад

I didn't realize there were other people NF1 or NF2 .I have NF2 and I'm embarrassed of them I always hide my spot hahaha and I have the same symptoms as you lol

@Eli-yw5yz 8 лет назад

I also have Nf. and also get lots of migranes headache my doctor dont know. what else to do.

@LilyMeadeBooks 8 лет назад

That's the really frustrating part. I've found that some of my headaches are caused by triggers, so isolating which things cause problems for me has helped a little bit.