So, after much procrastination (and the struggle with the image on the iser registration form), I finally made it here!
A bit about me
I’m an American export and live in England.
I'm chronic, sometimes having up to 15 attacks a day.
It starts without any warning, always on one side of my face. Within 10 minutes my eye has drooped from the pain, my nose is running, and I'm crying. The pain can only be described as millions of demons with red hot ice picks boring in between my eye and my nose trying to work their way out while something is sucking my soul out from me through force.
The pain spreads to include my forehead, inside my ear, my neck, and sometimes even in my teeth.
In fact it feels like something is trying to push my eye, ear drum, and teeth all out of my head from the inside.
The pain grows consistently worse in seconds.
This will last anywhere from 30 minutes to 3 hours. Then as suddenly as it started the pain subsides. But there is no real relief as I know it will be back, up to 15 times a day.
These started when I was young, the first one convinced me I was going to die right then and there. But luckily I was episodic then.
Up until around 2010.
I didn't know what was wrong with me. No clue at all. Doctors dismissed it as sinus problems.
I've had my wisdom teeth pulled with promises it would help. It didn't. I carried on.
I eventually was hospitalised with a thunderclap headache, which is like a cluster, but comes on more suddenly and doesn’t last as long.
I spent a lot of time in hospital getting numerous spinal taps, scans, MRIs, contrast MRIs and every test going for neurological issues. Initially, they thought I had a brain bleed or stroke.
It took years to get a proper diagnosis as I also have chronic migraines.
What’s the difference?
A migraine is so bad I must lie in a quiet dark room with little stimulation and I get violently sick.
With a cluster the pain is so incredibly bad that I pace the floor, kicking, swearing, screaming and hitting my head on walls, cupboards or anything to distract my brain from the pain. Occasionally I will vomit which seems to bring me some temporary relief.
I was given documents to read and told to do some research for head pain and found more about this beast on a website called OUCH. It described what I had perfectly!
I have since had a fantastic relationship with my neurological team. Luckily mine are one of the best in the country and I cannot thank Dr Ahmed and Vicki Quarshie (the headache specialist nurse) enough. They have saved my life numerous times.
I have also started a local support group to try and be a shoulder to cry on and advocate for others.
I have tried every medication imaginable; triptans, Verapamil, Propropranol, Lithium, Depakote, Melatonin, Nerve blocks in my head, the D3 anti inflammatory vitamin regimen, oxygen and even a TENS machine. I have signed up for medical studies, Botox and have even considered a brain implant. The side effects are long and exhausting but much more bearable than the attacks.
I know, it sounds crazy.
Because these are caused by a problem with the hypothalamus, they are also triggered by sleep.
So the minute you hit R.E.M. sleep, which is around 20-40 minutes after dropping off, BAM, a hit.
Then you get up, hopefully not sleeping too long and past the point where oxygen will help (you only have a small window) and then try to sleep again. Then 15-20 minutes later BAM - repeat on loop.
Most medications work for a bit.
The beast comes back, it always does.
My doctor will try new things with me, which puts the beast back in it’s cage, for a little bit.
I’m currently on the D3 regimen, regular nerve blocks in my skull, Depakote, Frovatriptan, Melatonin and oxygen.
The melatonin has stopped 99% of my night attacks, but if I sleep more than 6-7 hours a night, I wake up with a horrendous attack. The only thing that stops attacks (around 80%) is by being on a high dose of oxygen for at least 15-20 minutes.
Imagine being in the worst pain known to man but knowing you won’t get any relief, if at all, within 20 minutes. It’s sheer hell.
If I breath high flow pure oxygen then it will abort most attacks. I now have a closet full of oxygen tanks and keep one in my car at all times.
I’m terrified to leave my house without my oxygen.
I have a portable tank that I take with me in case I don’t feel confident leaving it in the car. I have specialist valves for it and numerous masks. Personally, I prefer the masks.
There were times I was ready to end the pain, it always comes back anyway, right?
I have considered drilling a hole in my head to relieve the pressure.
I know enough about anatomy to locate the trigeminal nerves and I’ve thought about cauterising it myself.
I've slammed my head into a wall repeatedly.
I've stood under scalding water in the shower because the burn felt better. I’ve done the same with cold.
I've frozen my eyes with ice packs.
I've attached a TENS electrode to my head and neck and shocked it.