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.

All headaches are horrible,  no doubt about that,  so welcome to the largest unfenced loony-bin outside of parliament.  Many of us have been where you are now so I can promise you're among friends who understand.

Living with CH is bad enough but have you considered you might also be playing with another, cluster-like, type of headache as well?  One that springs to mind can easily deliver you 10-15 short and extremely painful headaches each day,  each one just like a CH,  and if you're in a cluster cycle at the same time they're remarkably difficult to pick apart.

Happily, they are also quite easy to treat and manage.
 
You may consider keeping a headache journal to see if it helps pin things down a bit  -  time of onset, duration, pain level, slow start or fast, what you were doing at the time, what you'd been eating, all that sort of thing  -  because this sort of info can be a huge help to your neuro team.

It can also help with the 'calm down' phase after each hit and give you even greater reason to hate the beast.  I know this!

I'm also pleased you've been in touch with OUCH as I've heard many, many good things about them.  It might also help you to know we've ch.com members in Britain and I'm sure they'll say g'day as well.

Full steam ahead and damn the torpedoes!

Brian down under.

Hi and welcome, you could give a Batch a hoy, via a PM! He's the guru on the vitamin D regiment, and will explain what you need to do for some positive results.

Cheers Hoppy

I video chatted with Batch a couple weeks ago.  :-*

I’ve been on the D3 over a year now.

And it’s definitely clusters. I’ve had every test known to man and it took what seemed like an eternity to get diagnosed.
Oxygen is my saviour.

I’ve also had thunderclaps a few times as well. And have chronic migraines.

I keep a diary for my neurological team, here’s an example attached.

---

Hi and welcome

I must say that your headache diary format is one of the best I've seen and I'm sure your doctors love the detail in the easy to read layout.

You also wrote a pretty vivid description of your headache that many, including myself, will find hard to read as it brings back memories (just like watching videos on YouTube of people having a CH).

You're also a fellow member of the multiple headache types group where some people have 2 types (often CH / migraine) but some can have more going on which can really complicate not just diagnosis but also treatments.

It is great that you've linked up with Batch, he is our resident guru around D3 and oxygen and has helped a lot of people with huge improvements.

You've worked through a lot of things that can help many people. With the medications, like verapamil, etc., at what point did you give up on them? Did you progress to the point where the side effects outweighed the benefits or where the dose was high enough to be the maximum that your doctors would permit? I suspect you have based on what you've written, but just checking.

Did you try each preventive in isolation? Or have you tried combinations of two at once? This can sometimes help, e.g. the "chronic cocktail" which combines a combination of verapamil and lithium.

With oxygen, have you read our O2 page (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE How high a flow rate are you using?

You've not mentioned energy drinks, like Red Bull, with both caffeine and taurine. It can help many people if they drink one very rapidly at the start of a CH, reducing intensity and duration.

Have you got any non-headache related issues that could be complicating things?

What is your diet like? I'd try to eat as natural a diet as possible.

Have you tried using a probiotic? Gut bacteria health can have significant positive impacts on your health.

Have you identified multiple CH (and other headache) triggers? How much can you do to avoid as many as possible as often as possible?

Whilst it sounds like you've some great medical professionals trying all they can, I'd consider also working with some others just to see if there is anything else to try.

Really hoping you find something soon. If you do, please keep us updated here so others can benefit from it too.

The headache diary isn’t my design, it’s the design of my neuro team. I hate it. I would prefer an app but they refuse to use and other data format which is irritating and inconvenient.

Yes, diagnosis took a very long time.

Some meds I gave up when the side effects outweighed the benefits (like Dopamax and Lithium) and others when they didn’t work - I’ve tried them in isolation at and the highest therapeutic dosages.

I am using 15lpm and I have a optimask, though I don’t like using it.

Energy drinks are a no go with me and have been a trigger in the past. I have had one brand and flavour that I can tolerate but it’s not been successful in aborting.
Induced ice cream headaches have, however, distracted my brain.

I have many non-CH issues, mainly with EDS, a curved spine and hip that isn’t rotating. I know, sounds sexy, right?

I home cook all of my meals using free range and organic. I avoid dairy (except cheese) and do take probiotics (certain brands I’m sensitive to since having my gallbladder out a few years ago).

I have a long list of known triggers and I avoid them at all costs.

I’ve sought advice from everywhere possible and am open to further ideas.

I have the ability/ingredients to bust once I get the nerve up.

I suspected you'd have done pretty much all I could suggest, but wanted to ensure nothing slipped through the cracks.

For the oxygen, I found that I aborted just over three times quicker using 25lpm compared to 15lpm, which is consistent with other people getting faster aborts at higher flow rates. There are also on demand regulators that essentially give you very high flow rates. I've seen some people report here that where people either couldn't abort or had long abort times, upping the flow rates resulted in aborts / much quicker aborts.

So those options might be worth exploring, although I seem to remember that the UK does (used to?) use cylinders with built in regulators. So you may need to see if there are options to get around this.

With the non-CH issues, I suspect that many of them, especially the EDS, could be resulting in inflammatory responses, even if they aren't at a level where you directly observe the symptoms. I'd see if there is anything which can be done to measure / reduce them as a source of inflammation. Again I suspect you'll have done this already.

It sounds like a good diet you have (many would benefit from it). With the cheese I'd avoid hard / blue cheeses as these can be triggers too.

For info about busting, I'd look at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - they have a lot of people with experience in this area (I've never explored this option). They should also be able to give you UK advice too which may help. It has helped a lot of people, but then it isn't an option for many others.