Sunday, May 31, 2009

May 24th Thru May 30th

Well this is going to be short and not so sweet. I am aggravated and just plain worn out from this past week.

I have had a C.H. Attack every day this week, Sun. through Sat. This made for a very rough work week, I was sent scrambling for my imitrex much too often for it to last me the entire month that it is supposed too , even with the not very affective imitrex nasal as back up. (Thank you for the Torture Ins Co.!!)

I know what the trigger has been and unless I can have a sit down with mother nature to discuss the up and down of the air pressure, (It's been like a roller coaster on steroids.) there isn't a damn thing I can do about it.

Sunday, May 24, 2009

May 18th thru May 24

Sunday May 24th

Well the rest of the week was uneventful and the C.H. demon left me alone for a few days. Today is Sunday around 10:30am and so far the day is Pain Free, I pray the rest of the day stays that way. We are expecting thunderstorms today and as I have previously noted air pressure changes are yet another C.H. trigger.

Wednesday May 20th

Magic hour hit with a viciousness today made myself wait to take a shot in hopes the C.H. would die down, it didn't, grabbed my Imitrex shot and ran for the bathroom at work again. Got through the rest of the day feeling like my brain had had a seizure or I'd had a stroke.

I'm not sure if anyone else who suffers from C.H. has noticed this but before, during and after I have a C.H. attack I find it hard to speak or find the correct words when needed. I have a job where I have to speak constantly and this sometimes goes horribly wrong during a C.H. attack. It's like I've gone temporarily retarded or have like I said above have had a stroke or something. Words come out wrong or I say the wrong word altogether or I just have to pause for a more extended time just to get the word out. All my synapses are not firing correctly at these times or so it feels. My family understands this and is usually good about it and doesn't make to big of a deal about it. I have however had a Supervisor who used to work for the co. that I do, ask me if I'd been drinking on the job due to this. Well that kind of upset me especially since he was aware of my C.H. condition. I informed him not so nicely that no I don't drink and can't drink alcohol since it is a Trigger for C.H. . Needless to say this speech issue has at times been embarrassing to say the least. Luckily as I said earlier, for the most part my family is understanding of it, though occasionally my daughter (who can be a bit rude with her own mouth at times) has laughed at me which makes me feel even worse and a bit angry at her for it. I love her dearly but she is one in my family who sometimes just doesn't understand what I go through.

Monday May 18th

Started the work week with a banger C.H. it was mild and managed to get through it barely without shot. Again around my "magic" hour of 4pm. Got through the rest of the work day and came home feeling totally wiped out as I often do after fighting the devil of C.H.

Sunday, May 17, 2009

Last Week

Saturday May 16th

Got Nailed again today shortly before magic hour around 3:30p used the Imitrex nasal again (I am trying to save my shots for at work), this time I should have used a shot. Wow nasty 7kip and used the not so affective nasal med, was tortured for about an hour and exhausted afterward. insurance co. thinks 4 shots per mo. is enough. LOL Idiots!!!
I can use those up in one week. Yes it's still ticking me off and will for years to come so it seems unless they change things. When FDA dolled out it's recommendations for the use of Imitrex I don't think they took into consideration it's use for Cluster Headaches. So we SUFFER, even though our Dr's prescribe it as needed that doesn't mean our ins. co.'s will fill it that way. Who can afford over 200.00 per shot pack?? Not me even on my full time income.

Wednesday May 13th

Had C.H. at work again today around my magic hour again 4ish ran for bathroom and used for the 1st time the Imitrex nasal. Since my ins. co. is limiting me on my Imitrex shots the Dr. gave me some nasal takes this stuff soooo long to work compared to the shots I was still reeling for an hour after taking the Imitrex nasal.
This won't do...will have to advise my director at work of the issue since I will more than likely be making errors or be away from my desk longer. I don't like people to see me with one of these devils (C.H.).

The weather has been changing alot here in Pa. from sunny to raining, quick changes. I am wondering how many other C.H. sufferers have noticed that Air Pressure has an affect on C.H. Strong, quick changes in air pressure are a trigger for me. It seems anything at or around a 3 point pressure change in either direction up or down will trigger a C.H. for me as well.

My Father is the one that brought the air pressure affect to my attention as he has also suffered from C.H. for years and took notice of air pressure changes affecting him as well. He lives with me now and is usually either right ahead of me or just behind me with the air pressure triggering a C.H. . He has been checking air pressure with relation to his for years, and now has been tracking mine as well, I think he almost has it down to a science by now. (cheers Dad...Love Ya! Shh he doesn't know I've started my C.H. blog again :D )

Sunday May 11th

Had another C.H. today around 4pm, this seems to be magic hour for me when the C.H.'s are not waking me up from a sound sleep. Barely got through dinner and took a steaming hot shower.

Try to keep your head on...Until Next Time.

Sunday, May 10, 2009

This Week


Today was shopping day as usual, the 1st half of the day was PF (pain free), then the afternoon hit. I felt the C.H. twinge on and off all freaking afternoon and evening, didn't get a full blown C.H. but the twinge alone is enough to screw with you. Had the twinge and the congestion that usually goes along with a C.H. but it never got above the twinge factor. For me what I call a twinge is a 3 on the kip scale*.

*The kip scale is a scale used by people who suffer from C.H. to gauge the intensity of their pain. See The Kip Scale for more details.

For those of us who suffer with C.H. you know that you not only get woken up from a nice sound sleep with the C.H. devil but it can affect you at any time of day as well. So just getting a good nights sleep sometimes is a horrifying struggle. It's like waking up into a nightmare, but you can't wake up from it because you are already awake and the pain is still there. I have lost many a good nights sleep from this condition and from the looks of it will loose many more.

God Help Me...
This is a phrase I used quite often especially when I have one, no matter what time of day or night it is.


Went to see my Neurologist today, the drive alone is a C.H. Trigger, his office is an hour away from me up and down mountains both ways. To top it off the air pressure was up and down anyway due to weather. Got there ok, but started to feel C.H. coming on while in his office and by the time I hit the highway on the way back it was full blown C.H. madness. He didn't have any imitrex samples on hand to give me and I only have 1 shot left to last me until the 15th so it was Suffer and just keep driving so I can save the last shot for if I get another one at work. My hands were gripping the steering wheel so hard that when I finally did get home they hurt as well, and it took a bit of doing to un-grip it when I pulled up to my house. When I did get in the house I was still in pain and completely exhausted, so much so that even my speech was slowed or slurred not sure which at this point. My Dad (who lives with me) knows when I have one just by looking at me asked me something can't remember what now...but it took me two or three tries just to answer him clearly. Needless to say he didn't speak to me again until I let him know I was able to function or at least speak again, roughly 30 min. later. (8 Kip*)

I wonder how many other people who suffer from C.H. also feel like they have temporarily become retarded or sound like a stroke victim either due to C.H. or medication side affects after taking what ever abortive they are on... ?


I got hit hard at work with a C.H. ran for the bathroom with my Imitrex. Took a bit longer than usual for the shot to work and for recovery.

It sucks getting them when I'm at work because I have to wear headphones all day and listen to either CRAPPY music and in some cases yelling people, or fax machine tones on a number that is supposed to be a home number.

Got through the day with more exhaustion than usual. (7 kip*)

Sunday, May 3, 2009

Miserable Hour and a half today

I Had Miserable Hour and a half today with yet another cluster headache. Eye tearing searing pain in my left temple again. Of course it was around dinner time so I didn't eat much. I couldn't take a shot of Imitrex because I don't have enough left to do so at home...need to save them for when I'm at work. So I did the only other thing that seems to take some of the edge off and took a STEAMING HOT shower.

Right now it's better but still feel like I've been hit by a Mac Truck and am now exhausted.

The pain is always on the left temple area of my head and I can't sit still during one that is impossible. In fact Throwing things would be great when I have one, if I had anything I wanted to break.

This Friday I have another Neurology appointment, hopefully I can get some free shots from my Doctor since my insurance company couldn't care less.

I've found a fellow Cluster Headache blogger, haven't met him yet but have started following his blog as well. He has a friend who is doing a documentary on Cluster Headaches, I hope they mention the problems we suffers have getting medication.
Feel free to check his blog out as well Doc's Cluster Headache Journal

That's it for now, I need to stop staring at a light colored pc monitor...

Try to keep your head on...Until Next Time.

Saturday, May 2, 2009

First Post

Well this week was a rough one. I have a stressful job anyway but when you add a Cluster Headache to the mix it makes for a very exhausting, torture filled week.

On Thursday I got hit HARD with a cluster in the middle of the work day and wouldn't you know it as I was on my way to the bathroom to take a shot (Imitrex) for it the director sees me from her office and Loudly asks me to stop by when I get back. She only saw my backside so at that point she had no clue. When I did get to her office I was still reeling from the pain and it showed physically. Anyway I lurched into her office and immediately collapsed in a chair, if only I was clear enough to see the light dawn in her eyes at the time. Luckily the director is aware of my problem and after she gave me an update on a work issue was kind enough to give me a few minutes to recoup.

I have been having issues with my insurance co. resently because they will only allow me 4 shots per month on my prescription plan. Um hey...sometimes I get more than 4 freaking Clusters a month people!!! Yes, I know my attitude is showing, but I've got a right to be a bit grumpy with them. For anyone who knows what Cluster Headaches are like, you know that going without medication or something to stop the pain is tantamount to TORTURE. Needless to say on my meager full time income I can not afford the $200.00 plus per shot pack when I run out and the ins. co. won't cover more until my 30 day period is up. So I find myself hording my shots and using them only for when I'm at work. This means I suffer like hell when I get one at home and there have been several occasions where my Dad has had to help me get through them.

I'm at a loss for what to say to continue this post at this time, but I do have one thing to add...

My ins. co. is going by the FDA advisory/preferences on the Imitrex Drug usage...hmmm .....

Did you idiots ever consider that this drug can also be used for Cluster Headaches ???

For More on Cluster Headaches visit...

Try to keep your head on...Until Next Time.