Lady Borked Brain

My asshole brain.

Dear Imgur,

Last year, I made a post (http://imgur.com/gallery/0gInI) about my asshole brain and how it decided a few years ago that a never-ending migraine was what it wanted to do in life. I received a whole bunch of really kind, really helpful messages from people who were either in the same/similar situation, who worked in the field, or who just wanted to help. I really hoped it wouldn't get to this point, but it has, and I need help :(

In the last year, and since my post, I've had a lot of new treatments. New medications (one made me lose the feeling in my hands for a few weeks), chiropractic treatment, different diets, getting my daith pierced, more caffeine, less caffeine, sleeping and living in "black out" conditions. I don't want to say that none of those have helped, because I've seen some improvements in my overall health, but Ouchy McCuntbrain hasn't given up or given in.

The last really hopeful treatment left to me at this point, before going overseas or submitting to vastly more invasive treatments, is Botox (you can read more on Botox treatment for chronic migraine here: https://www.migrainetrust.org/living-with-migraine/treatments/botox/). I really, really want and need to have this treatment done, even though it means having needles shoved into my face and head a lot, for 4-6 sessions to see if it can at the very least offer me a break from unrelenting cranial agony. My neurologist appointment via the UK's NHS was scheduled for Jan 23, 2017 for the first treatment, and then this happened...

True story.

In September 3, 2013, I developed a condition called New Daily Persistent Headache (NDPH), which in my case is a fancy (and not entirely accurate) way of saying I got a migraine one day and it never went away. The picture up top is my brain, and there's nothing physically wrong with it except for the fact that it just doesn't work properly anymore! NDPH is great in that nobody knows why it starts, what causes it, how to cure it, and as people generally experience migraines in a variety of ways, NDPH really encompasses a variety of different related issues.

Since falling sick with NDPH, I've seen dozens of healthcare professionals and I'm now seeing one of the country's top neurologists, which is awesome. He's very, very, very busy, and the current wait time to see him is six months. Less awesome. But let's talk about NDPH!

I don't know this man.

New daily persistent headache (NDPH) is a primary headache syndrome which can mimic chronic migraine and chronic tension-type headache. The headache is daily and unremitting from very soon after onset (within 3 days at most), usually in a person who does not have a history of a primary headache disorder. The pain can be intermittent, but lasts more than 3 months. Headache onset is abrupt and people often remember the date, circumstance and, occasionally, the time of headache onset. One retrospective study stated that over 80% of patients could state the exact date their headache began. [Wikipedia]

This almost exactly describes my situation, with the difference being that my migraine has been constant, with no changes in intensity. My NDPH set in following flu-like symptoms I suffered from over a weekend; the flu symptoms were gone by Monday but I had a headache which was becoming increasingly worse as the day went on. I remember so clearly biting down on my tongue so I wouldn't throw up while I was at work, and thinking how weird it was that I felt kind of seasick. I'm still not sure why I feel/felt motion sick, but it hasn't gone away in the whole three years so there's that.

My migraine covers both sides of my head, concentrated in top center, and pulsates from back to front with a kind of grinding sensation, with a feeling of increased pressure on both my right eye and ear. The effects I've experienced from NDPH are increased sensitivity to light and sound, aversion to strong smells and sudden movements, and constant mild nausea. It doesn't seem like much when I write it all down but it feels like doodoo.

Another true story.

These days, my life is all about sleep. I alternate cycles of sleeping for 16 hours a day for a few weeks, and then sleeping 2-3 hours a night for a few weeks. Right now I'm in the sleeping very little phase which leaves with a lot of time doing not very much of anything. I can't do any single activity for too long because they either require me to be doped up in order to do them or they aggravate my sense so much I end up exhausted from 30 minutes of activity and have to stop. The rest of my life - work, friends, romance, etc. - have been on hold since September 2013.

During the past few years I've been receiving countless medical checks and tests for everything and anything they think could be the cause. I've had a camera stuck up my nose, a lumbar puncture, two series of occipital nerve blocks (these HURT, I don't recommend them), two hospital stays, IV treatment, five different anti-epilepsy/high blood pressure meds (which are used off license for migraine treatment, I don't have either epilepsy or high blood pressure), seven different pain meds, sinus treatments, and three different 'natural' treatments.

A note on lumbar punctures and migraines: following a lumbar puncture, it is very common for people to develop what is known as a 'post dural headache', which is thought to be caused by spinal fluid leaking from the healing wound where the sample was taken. It is entirely possible to develop additional headaches on top of a pre-existing migraine* and a post dural headache is the second most painful thing that's ever happened to me. Like, so painful to even turn over from my back to my side that I blacked out and wet myself more than once doing it. I had my lumbar puncture in a private hospital and because of a dispute with my insurance, the hospital sent me home a couple of hours before the post dural headache kicked in, and while I had been told that I might experience a headache following the procedure, nobody had described how bad it could be or how long it would last. So I was at home, alone, when the headache fully kicked in and it fucking sucked. And then on top of fucking sucking, it lasted almost seven days. So, if you or a loved one find yourself needing a lumbar puncture in the future, I recommend that you make them keep you in overnight and provide adequate pain medication or just simple euthanasia.

*This was the most painful thing ever. Ever, ever, ever.

Found this comic on a website called empathizethis.com, under a post titled "What if your headache never went away?"

The most common question I get asked about NDPH is "so what can you do?". Well, that's hard to answer. Technically, I can sit down and write this post, however it's so far taken me two hours and three codeine to write this much. I can cook a meal as long as it takes me less than 30 minutes and I don't have to stand over it or do too many things at once. I can go to the shops as long as I'm only popping in for small things like milk and bread (UK supermarkets like fluorescent lighting and reflective surfaces).

I can do almost all the things I used to be able to do, however now I just can't do them for long periods of time or without taking pain relief medication. For example, I used to play a lot of a certain MMO when I got home from work before I got ill, and now if I want to play something I can only do so by either being off my face or playing for like 20-30 minutes. So, in short I can do a bunch of stuff, just in short bursts or heavily under the influence. Marijuana has helped my quality of life a LOT; it's amazing how much discomfort you can ignore when you're wasted.

In all honesty, life has been really rubbish for the last three years, but I don't want to let myself get into a rut of bemoaning how shit everything is. I have an amazing family who've helped me as much as they can and who'd do anything for me, supportive friends who've been there when I needed someone, my (ex-)company helped me as much as they could and for as long as they could before it was time to part ways. I've been really, really lucky in the people around me and the help I've had. Yes, it would be amazing if my life could go back to normal, but as that doesn't look like it's going to happen any time soon, I'm just trying to live as fully as I can with what I've got.

What does the future look like?

Besides a real serious desire to win the lottery in the future, I'm just trying to take it day by day for now. I'm hoping that my neurologist will be able to fit me in for a Botox nerve block treatments soon via the NHS system here in the UK. Unfortunately, he has that annoying six month wait time and it could take multiple sessions for me to see any results from those so I could be looking at another two years of treatments at least. Recently I've been in touch with a specialised headache and migraine team in the US who think they might be able to help but that'll involve a lot of money that I just don't have right now, so my family and I are juggling the idea of a Gofundme account to get me over there as an alternative option to the Botox. Whatever happens I have faith that I'll bounce back!

Thank you for listening to my rant, Imgur! You guys have helped bring me chuckles when I needed a smile, tears when I needed reminding that mine isn't the biggest problem in the world, and cats because tax.

Unfortunately I don't have any cats, so here's a a picture of Hari, my needle mouse. Sadly I had to give her up when I got sick but she's still the cutest thing in the world!