Life with Neurofibromatosis and Chronic Migraines
Transcript:
I've mentioned by health problems a couple times on this channel, but never in context.
You guys have been really supportive and nothing but understanding, so I thought you deserved the whole story. Also, I get a lot of comments and questions asking about how I'm doing so I thought it was time for another update.
First off, though my health got really bad at the beginning of this year, health issues are not a new thing for me.
I have a condition called Neurofibromatosis.
It's a genetic condition that I've had since birth which causes tumor growth and migraines. If you google that condition, please don't cry because the really scary pictures are not what I suffer from. I'm lucky that I haven't had much tumor growth. I have like a small spur on my spine that gets a little uncomfortable, but my problem has pretty much always been migraines.
I've dealt with headaches my entire life.
I can't remember a time when they weren't an issue for me, but they certainly got much worse after puberty. I'm very good at managing my headaches, or at least I used to be. At the beginning of this year my migraines got a lot harder to control.
The thing to understand is that I am always living with some level of pain.
Those doctor pain charts that go 1 through 10 for little faces... Those are really hard for me, because a good day is typically a three or a light four. So when I say that my headaches were getting really hard to control... I'm saying that I was dealing daily with a nine or a ten. I managed to keep going to school and work through this pain for a little while but eventually I cut back on my work hours to focus on school and when my headaches didn't clear after that I quit my job entirely.
I tried sleeping better. I tried eating better.
I tried all the tips that I knew to regulate my headaches and I kept getting worse and worse and worse.
So I made the tough decision that I needed to withdraw from school because I felt that if I stayed my health would probably get worse and I would flunk out. Since I have to go to school with financial aid I couldn't risk damaging my standing like that.
The day after I withdrew from school I was in the hospital.
I’ve said before that my doctor thought I had Pseudotumor Cerebri which is when my brain thinks I have a tumor, but I don't so it's giving me all the symptoms but they can't find anything to treat. My doctor said that I my symptoms are not as severe as most people who have that condition which is pretty freaky, considering how severe my symptoms were. So we're not really sure if that's actually what's wrong with me.
It's probably just related to my Neurofibromatosis.
A lot of things trigger my migraines.
I can't drink soda, coffee, or alcohol. I have to eat right. I have to sleep right. I've lost 30 pounds. Doing all this regularly helps migraines a little bit, but it doesn't get rid of them. I'm even doing physical therapy. Physical therapy for migraines is actually a thing. That has been the most useful thing for me at this point, because I'm also allergic to oxycodone, vicodin, tylenol, and most most other pain medicines just don't really work for me.
I can't take pain meds to relieve my headaches, so working on relieving tension has been really helpful.
Next my neurologist wants to try Botox therapy, which is crazy, but I've been researching it and apparently Botox is actually super super effective for migraines. I watched this video and this girl said she went from having a headache every single day to two or three headaches between the two to three months that she needs to get her Botox injections. That'd be great! That would be absolutely wonderful for me.
It's an expensive treatment program though, so my neurologist has to submit for approval from insurance. She says it's likely because I was in a hospital a lot this year and they've done lots of tests and lots of other treatments including injecting the numbing stuff that dentists use on your teeth when you're getting a filling inside my nose on nerves that lead up to my brain. We did that for like three months but then it stopped working as well as it used to. So I'm really excited for the Botox therapy.
I know it's probably not going to solve all my problems.
Migraines are going to be a thing that I'm always going to have to deal with, but I would like to be in a position where I can deal with them again. Instead of having them be in charge of my whole life, you know. It sucks. It sucks a lot.
That summarizes my history, this past year, and what's currently going on.
I just wanted to keep you guys in the know. I know it can be really scary when you're really sick and you don't know what's going to happen or if there's any hope for the future, so I wanted to make a video for people who might be experiencing the same problems that I am so they know they're not alone.
My videos will still mainly focus on writing, books, and fun life stuff, but this is a part of my life and I'm not ashamed of it so I do want to share it.
Dealing with this when I was a teenager was actually a lot harder than it is now, so if you'd like to know how I did that please let me know and I'll make another video on that. Otherwise, I'm probably only going to talk about my health when big changes happen.
I'll probably update you guys on how the Botox thing is doing, but I don't plan on making a video about it every week.
If this video was helpful for you or if you've experienced something similar, please like it and let me know in the comments below.
I'm totally willing to talk about what's worked for me and what hasn't. And please subscribe!
I will see you guys with happier topics very, very soon.
Thank you so much for watching my videos. I really really appreciate you guys.
Thanks. Bye.
