Hey everyone. I used to get CH's 2 times a year. Generally in April and in November. It's been so long I can't remember how long I would get them - but I am sure they would occur for 1-2 months and generally one at night and towards the end of the cycle another during the day.  It has been about 7 years since my last CH but 2 weeks ago they came back... and like I said they are back with a vengeance this time. I swear it is almost like they are pissed off they have had to wait this long to get me again.

It started with two separate nights where the pain behind my eye was enough to wake me up, but not enough where I had to get up and do my pacing around. A few nights later they hit stronger along with one during the day. Now I am up to at least 1 almost full blown one during the day and 2 major full blown ones at night.

The last few nights have been so bad I immediately wake up from sleep, start pacing around the living room, pressing the side of my skull as hard as I can - or beating my head on a door, cussing, praying and begging god to make them stop. The past 3 nights during an attack, I cried harder than I think I have ever cried in my life because it hurt so bad. At some points I was crying so hard I couldn't catch my breath. I don't really remember ever being scared during one before but during the one last night I truly was scared. Not sure what I was scared of really, maybe that I was going to knock myself out or that my head was actually going to explode. I am sure many of you know what that's like but when it's happening I feel like I am crazy. And I am sure if someone were to see me they would think I was. I swear the past few nights if someone was around and offered to literally hit me hard enough to knock me unconscious I would have gladly let them do it.

This is the second week where I have had to call into work and tell them I would be late. When I get up in the morning I of course feel like I have had no sleep - and I look like I have been on some crack binge. I have tried to tell a few people at work what's going on but get nothing but "Oh I have had migraines like that" or "Do you think it's because you drink coffee" to my favorite "Do you think this kind of stuff is psychosomatic?" I swear when the guy at work said that last one I envisioned myself taking the pair of scissors from my desk, shoving in through his ear up behind his eye, twisting it around while trying to push his eyeball and brain through his eye socket - asking him if what he felt was psychosomatic. Just a vision, cause I would never do that.  But how can you possibly ever describe or make someone truly know what this feels like?

I have noticed myself staying up later, literally afraid to go to bed because I know what will come at some point of the night. I feel like someone in one of the Nightmare on Elm Street movies. Since the attacks have been hitting me around 1-3am I decided this weekend just to stay up past that point thinking just maybe I will "fool" them - yet they just hit later and then I am just more exhausted when trying to deal with one. I called the doctor today and the earliest appointment I could get was Monday so I am bracing myself for at least 4 more nights of whatever these things bring. 

Sorry for the long post and/or rambling. It's just hard to talk to anyone about these and have them truly understand. I am thankful these things left me alone for 7 years. Anyone that gets CH's year round or never has a down time I feel for you. Thanks for listening (or reading).

Hi Kristoffer,
sorry to hear the beast has found you again especially after such a long period pain free Heres hoping its over quickly.
I also told people in work about this condition with a wide variation of responses. Out of 21 people on my shift 1 (who´s wife is a nurse) actually understands what im going through the rest think im a miserable git (maybe i am) ive told them what to do if they see me getting hit (just leave me alone till its over) and tried to explain about the pain and fears every night but mostly i get the stupidest comments so i have decided not to mention anything anymore and over exagerate my happiness (GOOD MORNING HOW THE HELL ARE WE ALL DOING, DID YOU ALL SLEEP WELL, GOD I FEEL SO HAPPY AND RELAXED, I CANT WAIT FOR THE WEEKEND SO I CAN GET DRUNK) of course this puts them all in a state of confusion but at least i get a kick out of it LMAO.
i now work on the theory i explain it once, understand it or dont, ask me questions if your interested but keep the stupid comments to your selves.

Mark (out of cycle since 2.5 weeks, but still shadowing slightly)

On the oxygen, yes and no. It does require a prescription as it's a "controlled substance" in the states. However, if you purchase oxygen for welding purposes, it does not require a prescription. Go the medical route first as it's much easier and many insurance companies will foot the bill. If that doesn't work let us know and we'll get you the info on how to get set up with a welders outfit.

They have made huge advances in 10 years, but it still requires some patient trial and error when looking for an effective prevent. I ended up on 1200 mg a day of lithium while on cycle. (Don't let the Hollywood version of lithium scare you. I'm a cop and can work at this level and no one can even tell I'm taking it.) Blocks 70-80% of my attacks, oxygen and the occasional imitrex injection pretty much squelches the majority of the rest.

Many have found the best success with a 2 pronged approach to CH:

1; A good prevent, that;s the med you take daily while on cycle to reduce frequency and intensity of your hits. I use lithium, verapamil and topomax are 2 other popular prevents.

2: A good abortive, the attack starts, now what? Oxygen should be frontline abort. Imitrex injectables are effective for me but I HATE how they make my body feel, fortunately with the 02 it's rare I need them.

The key is getting either a doc knowledgeable on CH, hard since it's a rare malady, or at least an open minded doc who will look at the information you bring them and work with you.

One quick note on prevents. Most take up to 2 weeks to build to a level in your system that you see any benefits. That's where the patience part comes in. If you try it for a week and give up you may miss out on your silver bullet. That's when you really need the 02 to beat down the attacks while you work on your prevent routine.

Joe

try to get on some Verapomil. And take Melatonin at nite!

Welcome to Clusterville Kris...

Read the O2 info on the Left and print it out for your doc.

High flow regulators are a MUST and the RIGHT Mask. If you have trouble with either - you can purchase those yourself and we can lead you to the RIGHT ones. DJ has the masks at the CH.com store. Well worth the price.

I'm an O2 pusher BIG TIME. I use the demand valve, but most docs have NEVER heard of it nor do they want to hear of it, so we'll save that for later (mostly just us chronics use it).

Joe gave you some great advice - Listen to the boy - sometimes he even makes a lot of sense.    And he carries a taser gun so I don't even say anything bad about him.

Hope this cycle is a short one for you. But in Clusterville we do UNDERSTAND and there's very little we haven't heard/been thru. We're here to help so let us.

Hugs BD

I'll add my welcome to the list.  Congrats on the long layoff.  Sorry the bastard found you again.

Sounds like you need a battle plan.  That starts with a lot of reading.  There is nothing more effective in this battle than an educated clusterhead.

I'll start your reading list off with these:

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

There are alternatives approaches out there too:

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

For me Oxygen is my #1 abortive.  My fallback is Imitrex injections.  Though I have the Oxygen therapy working so well I don't use many anymore.

The blood pressure med was likely Verapamil.  Lots of us use it with a lot of success.  The trick is getting the right formulation and dosage.  It worked well for me the last few cycles.  I'm trying to do it with just abortives this time around.  So far so good 

Anyway, read up and then ask whatever questions you still have.  Then pick up an oar and help row the boat.  That's how it works around here.

-Dennis-

Kristoffer wrote on May 14^th, 2009 at 11:06pm:


my cycles are spread out over 5 to6 years too.  allot of us use this board to get some ideas then run it by our doctors. since  none of us are exactly the same there isn't any one sure fire way to treat this condition. this is like a think tank for cluster headaches. most of us here get involved with cluster headaches like some people get into baseball or hot rods. some of us travel many miles just to meet up, smoke cigarettes and talk about headaches.

Hi Kristoffer,  & Welcome!!!  

I am wanting to respond to something you asked here with a bit about my experience....
Quote:


You are correct - they cannot know all about everything!!  I educate myself as thoroughly as I can, and information is my best bet to help myself!!  My newest doc (I have fired two or three) is a HA specialist - was impressed that I was as knowledgeable as I am about the beast and specifics, and this is the way I think it should be!!  I think we should work together bouncing ideas off of each other, not simply the "specialist" telling me what to do!!  I know my body better then they do!!  They may know more about the medicine involved... but that is only a part of it.  I think any person closed to additional information isn't worth seeing - and if you have options as to who you can see, exercise this!!  Find who works for you!  I know that is hard in the midst of an attack, but if they are gonna stall working with  meds if that is the route you wanna take, find someone who will work with ya!  If they want to do scans, that is all good - but it shouldn't stop them from starting a preventative med in the meantime!!  My thoughts on the matter...
And I digress.
In my opinion, information that you take to the doc shouldn't be seen as an insult - if they have seen it before great - but this is a rare neurological disorder.  Better to Go prepared!!  

Val