hi I'm Cati (kt)

formerly chiariandcati I'm 19 and am diagnosed with Chiari 1 Malformation and chronic migraines. I come here to rant, complain, and generally talk about life with Chiari. Inbox is always open.

[chiaricat]

[tobeagenius]

Recent technological and scientific advances have fuelled a neuroscientific revolution. Imaging techniques such as those shown above have given us an unprecedented view into the structure and function of our brain.

[chiaricat]

Cool info on different scans used to observe the brain and it’s habits. 

[chiaricat]

Outcome of February 20th

Not much as far as changes for me this time. We’re still trying to not get into daily preventative medication, so I’m sticking to my magnesium and B2 for now. Bumping the magnesuim up from 2mL twice a day to 500mg morning and night and 250mg in between (arounf 4pm for me), and doubling the B2 from 100mg to 200mg twice per day. Another option given to me from my amazing pain specialist is to try taking my severe pain medication (Imitrex) again, but taking half a dose instead of a full dose, (I had really bad side effects the last time). 

So, not much is new for me, just more trial and error for now. It’s not the easiest but it’s nice to see progress even if it doesn’t seem like much is helping. 

I’m also starting to keep a daily headache diary. Colour coding each day for how I felt overall (1-10 scale, blue-red) Its nice to visualize my day, I didn’t think I would appreciate it as much as I already do.

Shoutout to anyone who is still reading my blabberings, you all mean the world to me. 

[chiaricat]

[chiaricat]

Hi, I’ve been letting social media slip away from me lately as my classload this semester starts to take its toll on my life. Anyway, here’s an update for anyone who’s still there.

My last neruo appointment ended with a new attempt at treating my headaches, preventative this time. In addition to my 3 per week allowance of painkillers I now take 2ml of magnesium and 100 mg of vitamin B2 twice daily. These are to replenish my body of those vitamins and minerals that have been depleted by years of over taking over the counter pain medications. Part of one of my headaches we believe is stemmed from the lack of magnesium. 

It’s been about 2 months on these suppliments. They worked great at first,  but like most other options that we have tried, I quickly found the effects lessening. I’m back to taking meds 3x a week, sometimes more, in order to be ablw to function. 

Overall, my headaches have been less regular, but worse when they hit. I’ve started to get random short attacks as well where I’ll be fine then get intense pain in my neck and head (Chiari based headaches). 

I go back to my neurologist tomorrow, hoping to maybe find another optino for now.

[chiaricat]

Neurology Appointment Today

[chiaricat]

A long overdue update...

I've been so busy lately with school and Pom things that I haven't been able to update any social media, so here goes nothing. About a month ago I had a neurology appointment where I was diagnosed with chronic migraines. I was prescribed five different medications to alleviate my pain; one daily preventative, two different media for moderate headaches (4-6 on a 1-10 scale), one for severe headaches (6-9), and one 'rescue' steroid taper for emergencies (more than 2 days with an 8 or higher). My mom was super skeptical about all of these, having seen my father go though the same medications in the past, and after talking through my options and weighing the risks we decided to call my doctor. I was taken off the preventative and the steroid taper, my medication intake was also limited to three days max a week. As for how I've been feeling, it's been better but it's also been worse. My sleep schedule has changed so much since moving into DU, a new boyfriend and friend group gave me a social live that takes place after 9pm, so naturally I'm up until around 2:30 each night and up for class by 9. It's not the best, but it's consistent. My daily pain rests around a 3-4 leaving me to just push through the pain most days, saving my 'med days' for 5s and 6s. It's been rough but I'm managing. Another neurology appointment is coming up in early December, so hopefully I'll get some more options then. Other than that my life has been pretty much positive, things are going well in school and outside of class. My friends are great, I'm Pom captain, and my boyfriend is absolutely the best (Shoutout to you Franike💚)

[rradcatt]

When you're a music lover and you suffer from chronic migraines.

The time you spend practicing your instrument is rewarding yet physically bad for you. You often have to draw the line between your health and what you love. I always surround myself with other people who put music first in their life, my best friends are either huge fans or musicians themselves, and it’s rough when your main social outlet is something that makes your life a literal pain in the neck. I wish I could go to shows and not have to worry about painkillers and earplugs to enjoy myself. I don’t want to have to leave early. I just wish it was easier for me to love music.

[chiaricat]

My appointment went well today. My neurosurgeon thinks that I have some chiari symptoms but not all of my headaches stem from there. Basically we think that I'm having two kinds of headaches, and when they happen at the same time they make each otherwise worse. I'm getting referred to a headache specialist in the coming month to try and get some of the pain under control. We talked about possibly trying some medication or making some lifestyle changes in hopes of improvement. At this point I'm just happy we're moving forward in my treatment. 

[chiaricat]

Had an MRI done, always a good time.

[whatsuprubberduck]

Able-bodied friend: Pain is only a temporary sensation.

Me: Someone get this girl a dictionary STAT.  Today’s word; Chronic.

[chiaricat]

Taking some steps towards hopefully getting better. MRI tomorrow morning, then an appointment with my neurosurgeon on Friday morning. Hoping for anything at this point.

[chiaricat]

Lately my joints have been super annoying. My hips, knees, shoulders, and elbows have been hurting like crazy and I can't figure out why. I'm cracking all over the place, more than usual. Like almost every time I move. It's pissing me off, honestly. As if I needed more pain or things to think about. If you have any suggestions on what's going on with me I'd love to hear them, as well as any ideas of how to make them hurt less.

[chiaricat]

Recently moved into my dorm at Davenport University, about 45 minutes from home. I'm loving the change and the opportunities already. Being independent is something I've always sought after. Everything has two sides to it though. My headaches suck per usual, but now I have a roommate plus 3 suite mates to deal with on my bad days. It hasn't been horrid yet, but it won't be fun when it happens. Thus also means educating a whole community on my condition and dealing with them say they get headaches too, and how it can't be that bad. Oh, so excited for that. Stress has set in as the beginning of class is a week and a half away and I feel so lost and unprepared. Basic college freshman stuff I suppose. Ive been worried about my health lately, joints have been cracking and sore more than usual and so very tired all the time. My ears don't stop ringing, I almost don't even notice it anymore. Forgetting so many things. So many.... Not understanding half of what people say to me and feeling stupid when asking them to repeat themselves 3-4 times. Sorry about the long post, I have a lot on my mind right now.

[mypsychology]

For more posts like these, go to @mypsychology​

[chiaricat]

Worst Morning Ever

I woke up with the worst migraine. I haven't had one this bad in years. I ended up throwing up twice because of it. I was able to finally fall back asleep and I'm feeling a bit better now.

[chiaricat]

Hey There!

Looking for some input. For my headaches lately I've been trying to take less medication and try other methods to relieve the pain. One thing I've tried that had helped was a cold pack on the upper part of my neck and sometimes a heating pad on my feet. I've read that this is supposed to draw the blood away from my head, decreasing any swelling/pressure and relieving pain. It's been pretty helpful but I was wondering if anyone had anything to chime in about (concerns, ideas, or whatever). Thanks guys.