I inadvertently tried posting this in the guestbook, but the formatting was lost, turning it into a big ugly block of text that even I didn't want to read. Here it is again, as it was meant to be (hopefully) ~

I was 8 when I had my first CH; I remember it vividly. It lasted for almost 2 hours, and I passed out immediately when it was done. Thankfully I was only attacked by the one CH at that age. We know what it's like, and just the thought of any child suffering that way (even my younger self) brings tears to my eyes.

My next CH didn't hit until I was 16. That was a series that lasted nearly a month, with 3 to 4 battles each day. Each time I KNEW I was going to die; each time I was amazed when I didn't. I clung tight to the adage, "this too shall pass", even when I didn't believe it.

My birthday is in December, and in the fall before I turned 17 I hit puberty. My life changed. Sure, everyone said it would, but it wasn't until years later that I learned that mine changed far more drastically than any of them could've imagined.

Puberty took a few years, and every other month or so during that time I would have a couple weeks of CH episodes. It was when I was finally finishing up puberty that the real "fun" began for the Beast; certainly not for me.

I was 19 when I last experienced level 2 on the Kip scale. It's been over 20 years since then that I have lived with a continuous baseline of headache pain that fluctuates between a 4 and a 5. Occasionally I'll have a good day, or a good afternoon, where my pain drops as low as a 3.

At the time of my writing this (June 2016), I have had 9 days this year where I have spent at least an hour at a level 3. Glorious times indeed!

People talk about having "pain free days"... I don't remember what those are like.

However, as the infomercials are happy to announce, "But wait, there's more!" I ALSO get regular migraines and seasons of CH's in addition to my baseline of regular pain.

I have truly become a connoisseur of headache pain. I live with shadows (rather ironic that's also my real name too), and get "spikes" of varying flavors of added pain. A migraine here, a pressure headache there... I have become so very used to living with them, and can easily identify one from another. But I don't fear them.

There's only one kind I fear... The baseline rises to hold steady at a 6. "No. Please no. Not again, PLEASE!"

The increased baseline can stay that way for days, weeks, or even months before the hammer falls - shattering my brain and thrashing in my skull. It wants to rip out my eyes and jellify my brain. "Maybe this time it'll just kill me and I can be at peace? Maybe? Please?"

The worst of it is when I get an “interesting” stacking effect. The math is sickening, I know, but here it is in all it's horrifying simplicity: Baseline + Migraine + CH. Thankfully the combination doesn't happen often, but when it does, I am not coherent enough for the dance - pacing, or bashing my head against anything. I'm on the floor, able to do nothing but writhe and claw and punch and pull at ...myself? ...the floor? I really don't even know.

When that happens I know only pain. I don't know where I am, or even WHO I am. Does it even matter? No. There is nothing else. Only pain.

Some religious people talk of hell. Honestly, their various descriptions of it sound rather delightful in comparison. I'm not religious in the slightest bit anymore. How could I be? My reality simply isn't the same as the fantasy world the people around me experience. I don't have the luxury of indulging such a fantasy, hoping that some savior will come rescue me.

I say "fantasy world" because what others describe isn't even close to anything I know as reality.

The look on my most recent Dr's face when he gave me a new prescription drug to try was great. He said, "When you start to feel the first signs of a headache..." I laughed (a bit more derisively than I meant to) and said, "Doc, I don't have a time machine, or I might just do that."

After explaining that I don't have a time when I am without a headache, but that I do get spikes, and some very bad ones (he doesn't understand CH's; honestly, how many could, even if they tried to seriously imagine it?), we decided that I'd try the meds when I felt the beginnings of a spike. The meds did absolutely nothing but at least he's trying.

There is one med that seems to help drop my baseline pain down by 1 point (on the Kip scale) tho. Verapamil. It doesn't do anything else for me, and I take it at max dose every day, but it's 1 point lower; bringing my average day (for the past 20 months) down to a "relatively stable" 4 on the Kip scale. I'll take it.

My wife and I are currently homeless, even tho I've got multiple high level degrees (a Masters, two Bachelors, and five Associates), and am a recognized polymath with many other skills, certifications, and accomplishments. None of that seems to matter in the reality I live in.

It's difficult to keep a job when the suffering is chronic, with spikes of even greater pain; and others just don't/can't understand.

But I understand; they have a business to run after all. Would I keep someone around that could suddenly not come in to work, or leave early, or spend an hour or two in a bathroom stall crying, thrashing about, and making a ruckus; scaring the employees and/or clients instead of getting work done? Probably not.

There's a teeny-tiny light of hope tho. I found an advocate that has been working with my doctor and pushing him to help me get disability. He's still against it (because he doesn't understand how I can really be disabled "just from headaches"), but the pressure is on now, and not just from me. So I maintain some hope.

If I can get it, then maybe... Just maybe, my wife and I can have a bed to sleep in together before winter comes again. It's not going to cure my pain, but at least then I might not have so much else to stress over (like a roof, and being dry and warm on cold nights).

I say I'm hopeful, but there's really a small chance of my actually getting disability within the next 2 years. But I must be hopeful and share that hope with my wife.

My wife. She's a wonderful woman, and empathizes with what I deal with (even tho she can't really relate – not that I would want her to relate); how could she not? She's far stronger than she realizes, and has stuck with me for almost 6 years of a wonderful marriage so far. Our relationship is the best, but the rest of my life blows.

She doesn't know it, but she's the only reason I haven't committed suicide on at least 4 different occasions (so far). I'm not a "suicidal person" tho, as I don't have "that kind of personality". But when the Beast comes to play I don't have ANY kind of personality. There's only pain and the singular desire for it to stop.

Thanks for reading if you've read my story this far. I look forward to getting to know some others that might be able to relate to the levels of pain I experience.

I wish many pain free days for you all!

~Shadow VanDusen (aka: Prince Demitri)

Demitri,

Welcome. Glad you're here, but sorry you have to be.

That is one great first post and there's many here who understand what you're experiencing.

Potter points you to Oxygen and he's right. Pure oxygen is a fundamental abortive for Cluster Attacks.  Read the link he sent you, then, dont  ASK your Doctor for a prescription for it, INSIST. If your Doctor doesn't know what to write, let me know and I'll send you a copy of mine.

Also, read the following link, in particular the second section. This regimen has been life changing for over 80% of those using it.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Take it from me (another chronic sufferer) that it is well worth trying.

Supporters are the most important people to us, so I'm delighted to hear that your wife is there for you. Ask her to read the link too.

This place has Clusterheads from all over the globe, so there is a world of experience, understanding, advice and compassion to be tapped into? And it's available 24/7.

Come back with questions anytime. There's always someone here.

Peter.

Great. My last reply post didn't post, even tho it looked like it did at first. *sigh*

Thanks for the info, and I'll have to re-write my reply.
I just... can't do it right now.

I will soon tho, so please stay tuned.

I wish you all many pain free days!

Given such a long and uncommon history the idea of diagnosing you and then suggesting treatments is something more than unwise.

First, would like to know the training/experience of your doc with complex headache disorders. Especially with your hisstory, need to be aware that there are dozens of Cluster-LIKE disorders: appear to be Cluster but are not and, some of which are quite serious.

What is your doc's background/experience/training?

(I'm writing keeping your $ problems at a distance right now.) IF he doesn't have good training/experience with complex headache problems, seeking a source of care would be worth the effort. Your local hosital (social service) may be able to offer free outpatient services and/or offer other agencies in your area with free medical care.

If you want/must stay with your present doc. Print a copy of the arricle, below, for him. It's a good tool to open discussions aroun care.

Note that you need two kinds of meds right off the bat: a quck acting abortive and one for longterm use to prevent attacks. Verap. is a preventive; won't stop an active atack. (Oxygen works but has short action and, with your $ problems, is a bummer because of initial costs of equipment, etc.) The article give more practical abortive choices.
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Given the $ issues, show him the following. Cheap, fast acting.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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This sugeestion is no an alternative to finding a skilled headache doc, just something to the longer article on meds below.

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Repeating the top: be sure you have a skilled doc. You have a messy history which a GP can't handle! Don't play with various treatments until you have a solid diagnosis.

The core idea I' pitching is: get with a good doc.

Second, here are some meds/ideas to discuss with tim.
I'm not recommending which to use or not use, since in any case, he would have to see the doc for an RX.