Cluster Headaches pt2

I wrote last week about the miracle cure of Red Bull – turns out it’s one of the least effective energy drinks out there with a puny 80mg of caffeine to play with. 5hr energy shots is where it’s at. 

BUT! My oxygen finally arrived!

Oh my, much relief, such O2, many wowz!

One tank of Oxygen is 2000 litres-ish, and on a bad day I consume a whole-tank in around 20 hours. On a good day, it’ll last 48hours. When the tank reaches 50% capacity, it’s power is greatly reduced, taking almost double the time to extinguish a head-ache. Fun!

I now have 5 tanks to keep me in constant stock, the NHS and the oxy company are pretty happy with this level, thankfully. I’ve also been researching the next steps in my treatment, my GP is about to retire and i’m going to switch surgery for a number of other reasons, I want to land at my new GP with a plan. The next trial for me is Psilocybin, the drug behind Magic Mushrooms 🙂
More info…

If you are researching for your own treatment, check out the Cluster Buster method which can be found once you are registered (for free) on their site. They rightly keep a lot of information non-accessible to the public as it is NOT medical advice, and may include substances that are illegal in your country. Respect and understand the drugs you are taking! Psilocybin is not for everyone!

Other treatment routes include surgical implants, which doesn’t sound fun but has a high rate of success – you get a small implant put on top of the offending nerve, and with a wand you activate the implant to shut off the nerve (gross oversimplification), ridding you of the pain. Hmmm… Not sure I want NFC tech in my skull thanks.

Overall, the Oxygen has been the biggest help, but I suspect that it just delays the headache. I used to get one killer attack a day, same time everyday – I now get 8 a day, that I can usually get rid of in 10 minutes. It’s a lottery as to whether i’m able to function afterwards, sometimes I recover perfectly, other time i’m a confused mess.

The worst bit of this cycle has been the exhaustion, I haven’t slept a full night in three weeks and I don’t know which way is up. Work have been great about accommodating me, but the timing has been awful. Starting at a festival was pretty horrible, I cut things short and bailed which sucked but it also came at the end of 2 weeks annual leave, so what should have been a refreshing start back at work has turned into a confusing state of hell. 

I think I may be coming to the end of my cycle as headaches are getting less frequent and lower in intensity – I have a good relationship with the Oxygen company now so i’m less anxious about things, which is helping as well. With a bit of luck this cycle will be over in a week and I can get on with my life.

The tracking system I put in place has been invaluable, i’m looking to open-source it once i’ve tidied the code up as it’s a horrific mess at the moment. On bad days it turned out I was forgetting how many attacks i’d had, so when I next see my doctor I can at least report with more accuracy. It’s also helped me identify trends and triggers. I’ve been off the booze almost completely since it started, but turns out a carb ridden burger is just as bad and a glass of red wine goes down fine, and helps the sleep.