I feel like i’ve just discovered my back garden is full of gold. I scratched the surface accidentally, and now i’m the richest man in my area.
I’ve suffered from Cluster Headaches for probably a decade now, they come every few years and last a month, usually hitting at the same time each day for an hour. An hour of the most excruciating pain you can imagine. The NHS pain-scale goes like this, i’ll skip to the juicy bits:
6 – Interfering pain. This is pain that takes up a fair amount of space in your thoughts and activities. You may be able to work through it, but it takes concentrated energy, and this means you can’t concentrate on other things. Normal daily activities are not possible.
7 – Dominating pain that takes control of your senses. This level of pain significantly limits your ability to perform normal daily activities, including maintaining social relationships and sleeping.
8 – Intense pain that causes you to catch your breath, stop conversations, and change your breathing patterns.
9 – Excruciating pain. Not only are you unable to converse, but you may also find yourself uncontrollably moaning or crying out unexpectedly.
10 – Unspeakable pain that can lead to delirium and unconsciousness. Thankfully, very few people will ever experience this level.
A cluster headache for me starts, out of no-where at a 6, within minutes it can be a 8 or 9. I have experienced a 10 once or twice – and it is the sort of pain that makes you contemplate walking on train tracks… My girl-friend at the time seeing me experience a 10 called an ambulance against my wishes, they were hopeless and made me feel even worse. Her thought was that we’d recently read about Oxygen being used to extinguish headaches, she figured the ambulance crew could administer oxygen – nope!
Roll on 2 years or so and they are back with a vengeance – Oxygen is still not approved by NICE in the UK, so my GP is unable to prescribe it.
A newer form of neurostimulation for cluster headache was being tested. An electrode is inserted into the sphenopalatine ganglion region, which is above the upper gum line on each side of the face. An electrode is inserted under the gum line and tunneled upward. When the stimulation occurs by placing a battery operated transmitter over the face area, the stimulator appears to be able to reduce the frequency of headaches and the intensity.
Wooo Hooo!! Brain Surgery!! You can imagine my families response.
I was fully up for this – you experience the pain and tell me you wouldn’t consider it…
I put up with a months worth of headaches, using SumaTriptan nasal sprays that barely worked, saw the neurologist, but things stalled and eventually got left. After a few months I decided to get prepared for the next cycle – I spoke to my GP about Oxygen again, and found out that NICE had now approved it’s use at home for cluster headache sufferers. Fantastic!
<Insert 18 months of NHS runaround>
2 Years Later, the cycle starts while i’m raving at Boomtown, fuck me, *PAIN!!!!
Being in a gabba rave is not the one with a headache, neither is the mile walk back to your tent when you can hardly see…
Long Story short – I am *STILL* on some NHS waiting list for an oxygen tank 1 week into this cycle. My GP claims to be doing everything possible, while I read online that tanks can be delivered in 4 hours in some parts of the country. Whilst reading this frustrating news I read about CBD Oil, Caffeine, Taurine and various other products being used in conjunction with Oxygen to abort a headache.
Caffeine & Taurine you say? I know that…
Excuse my language, but:
FUCK ME – RED BULL CURES CLUSTER HEADACHES!!!!
For those that suffer:
As you start to feel the first tweaking of a headache coming on, chug an ice-cold Red Bull. I used the 335ml cans, full fat edition. If you are on the Keto diet, maybe try the sugar-free version. Your Mileage May Vary?!?
If you can feel the headache still coming on, chug another.
I replaced the nasal sprays (sumatriptan) with RedBull. No other treatment.
Usually I would take myself to a dark room, turn off all electronics around me and wrap an ice-pack in a towel, holding it against my head. Now – im able to keep functioning and shut-down a headache within about 5-10 minutes.
Amazing! Someone, please tell the NHS.
The fear of my latest cycle caused me to create a webpage that would allow me to track my headaches, I wanted to be able to give my doctors more reliable data. I’m a bit of a data nerd, with a slight obsession with Grafana – you may have noticed.
I now have this in a mobile app on my phone:
Now when my doctor asks how often, what severity etc – here’s some proper data!