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Topic: Getting Crushed (Read 510 times) |
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bpdertcdr
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Getting Crushed
« on: May 27th, 2006, 2:12am » |
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Hello,
My name is Mike. I'm 42 and have had CH for about 4 years now. Lucky for me, I live in Pittsburgh, PA, where Dr. Kaniecki of UPMC happens to be located. A fantastic doc, but we all know that there is no magic answer.
I've been to this site a million times and just never wrote anything until now ... reason: I'M GETTING ABSOLUTELY SLAMMED. I know there isn't an answer, but I felt it was time to officially become a part of this community.
You know that other than our loving family members who experience our situation first hand ... no one really understands what is happening to us.
I was actually in some sort of remission for about 4 months until just recently. My wife, 20 month old son and I went to Florida for a week. Well, we all know what happens when you are relaxed ... BOOM! While packing for the trip I said to myself, "I'll just take one box of my imitrex viles ... that should be enough." Yeah right.
So, I started getting about 4 a day, went through the nightmare of finding a pharmacy to get the viles, and then, of course, I had re-filled "too soon" ... so, $398 for 5 6mg viles ... Using two viles a day that is. Then its amazing .... 4 CH a day, but then a 16 hour stressed out straight through drive with a screaming kid ... no CH. Go figure.
So, anyway, I'm pushing the limit to 12+ mg of imitrex, got switched from 3 240mg tabs of verapamil to 3 5mg tabs of norvasc, then 2400 mg of neurontin per day ... plus, lucky for me again, I have friends at our local medic base, and have an unlimited supply of O2 tanks to suck on.
No relief ... time change, season change, etc. has all been discussed. Blah, Blah, blah ... talk of methergene to "break the cycle," but you can't take the imitrex with it ... frightening test to not be able to take the shot ... anyone try this yet? I can't take the prednisone for other medical reasons ...
Sorry to seem to be rambling ... Had my 4th today just a short time ago.
The pain is just so incredible.
Earlier in the week I asked my wife if she wanted to go out on a "date." I bought some great seats for the Pirates / Astros game. The in-laws came over to watch the young one and we eventually got to beautiful PNC Park. Took our seats, grabbed a nasty hot dog and just took a big deep breath. Well, 5th inning... I start to feel it. The wife grabs the coats, takes my glasses off (so I don't break them) and the battle begins. It's a million miles to the car. She pulls the 4mg statdose pen from her purse and I manage to hit an area on my arm that isn't quite as bruised as most. Now what do we do? I'm screaming, crying, and she is keeping me away from the stairs for all the obvious reasons. The shot isn't working. What a nightmare for her. I just want to bash my head against a curb all the while stumbling to find the car. How many of us have considering just jumping in front of a bus at this point? Then, to boot, I'm a police officer, and yes, I've got a gun on my hip. Hell. Pure hell. Can't explain it to anyone, terror rips through as you become obvious prey to the scurge of the earth who hang around downtown ---- It just effects everything.
My son is starting to realize it and just stares at me until bursting into tears ... the 85 pound german shepherd working dog tries to crawl under the couch cushions.
Sorry again for the ramble ... It would take another million words to even get close to describing the pure hell.
Please accept me into this community. Maybe together ... some day ... we can do something ... something to push the bastard back to where it came from.
Mike
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MJ
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Re: Getting Crushed
« Reply #1 on: May 27th, 2006, 3:05am » |
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Welcome aboard Mike.
I Know that fear you mention about becoming prey while being hit. Its a fear maybe heightened by the knowledge from the job.
Whatever we can do to help will be done. Join in and help too where you can maybe you will find your magic as well.
The best medicine for CH lies here with and in these people.
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MJ
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E-Double
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Re: Getting Crushed
« Reply #2 on: May 27th, 2006, 7:08am » |
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Welcome aboard,
We have all been there!
It certainly sucks.
Consider this with the trex..........Less is more!
Many can abort with less than a full statdose and literally 1/3 or 1/4th of a vial. Try the "tip" located to the left on the menu.
As far as oxygen goes, make sure you have the proper set up so that you can at least have a fighting chance if relief.
Good luck,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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LeLimey
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Re: Getting Crushed
« Reply #3 on: May 27th, 2006, 8:16am » |
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Mike you're welcome - and I wish you didn't have to be.
It sounds as if you are getting more hits during the day than at night is that so?
There are lots of things we can suggest for you. I know you have Imitrex and O2 to hand, what else have you tried? Are you episodic or chronic?
I don't want to launch into some great spiel about different things if you've already tried them so I'll hold back for now but rest assured, all of us will go all out to help you
We will offer help and support to your wife too if she wants to log in. being a supporter is the hardest job on earth.. watching someone you love go through this pain is pure hell and she needs as much support as you.. and she will get it! 
take care for now, you're with family now!
Helen
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bpdertcdr
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Re: Getting Crushed
« Reply #4 on: May 27th, 2006, 12:10pm » |
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Thanks for the prompt responses and welcomes!
I am chronic ... solid and several for 4 years ... except for that wonderful period of remission last year! BLISS!
Not smart enough though ... how many of us forgot to keep up with refilling the scripts while we had a little bit of relief? I would have had a "stock pile" of the "trex."
The wife actually decided to switch me back from the norvasc to the verapamil this morning ... can't take the chance of starting something new in the middle of this "flare up."
Thanks again.
Also, anything I can ever do for anyone here ... please ask.
Michael
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bpdertcdr
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Re: Getting Crushed
« Reply #5 on: May 27th, 2006, 1:42pm » |
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Me again ...
Just came up with this one ... managed to just launch my 6mg and 4mg stat dose pens into one of my emtpy vials! ... Now I can draw just 2 or 3 mg judging on what that bastard has in store for me! ...
I don't know ... may work for others as well.
Thanks again.
Mike
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Jasmyn
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Re: Getting Crushed
« Reply #6 on: May 28th, 2006, 3:42pm » |
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Welcome home Mike.
Here you are safe to vent and get support, as you know by now and I'm glad that you started to post.
The trex tip is great as it lowers the amount of rebound hits.
You hang in there, someone here is always home and the lights are always on.
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Jazz 
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bpdertcdr
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Re: Getting Crushed
« Reply #7 on: May 28th, 2006, 5:41pm » |
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Thanks ...
Yesterday and last night I hit an all time record.
10.
This morning, my wife paged Dr. Kaniecki and, on a Sunday morning, he returned the call. He called in a script for Methergine in attempt to stop the Bastard. Problem is ... can't use the trex with it.
So, I've already battled today 3 times ... 10 lpm O2 prevailed after about 20 minutes each time. Wish me luck ... especially not being able to go for the shot ---
Hope the methergine does it .... anyone else using it?
Thank you again for the welcome.
Mike
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nani
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Re: Getting Crushed
« Reply #8 on: May 28th, 2006, 11:41pm » |
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Hi Mike. Welcome. Take a look at this kudzu info, if you haven't already. Of course, I really don't know if there's any possible interaction between it and methergine, but it's worth the read. Look at all the threads that are linked in the first thread, too.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
note: I just checked drug digest for possible interactions and this is what came up:
No interactions were found for the drugs you selected.
You searched for interactions between the following drugs and herbs:
Kudzu
Methergine
I had to use methergine as a post partum drug years ago and had a very bad reaction to it. 
pain free wishes, nani
edited for redundancy 
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maximilyun
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Re: Getting Crushed
« Reply #9 on: May 29th, 2006, 12:27am » |
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Welcome Mike! A Steelers fan I hope? I've been a fan since 1979! You're post reminded me of cluster I won't soon forget.
As disturbing as it sounds, I had a good "lol" at your Pirates game story. When the Bears played in Champaign Ill for a season, I caught two games, the first and last of the season. I'm not a Bears fan mind you, but I lived only 45 minutes away at the time, and didn't want to pass up the chance to watch some live football.
Anyway, my cycle had just started, and you know how it is when you've been pain free for a while: you get lazy.
We parked the car a good mile away from the campus stadium and walked. I left my imitrex injector in the glove compartment on accident. DOH! Oh well, I figure. It's three hours. What are the odds?
HA!
Midway through the second quarter, that familiar pressure starts behind my right eye. I'm practically about to panic. I paid 90 bucks for these damn tickets! Right before halftime I notice the couple in front of me is in their late fifties, and the Mrs. has a bag the size of a backpack. She's SURE to have some kind of OTC I can take, and maybe get lucky.
I ask her politely if she has anything for a "headache" (yeah, right, as if that even comes close to covering it). She offers me a bottle of generic something or other that I don't even read. I gobble up three happily, and pray.
Much to my chagrin, I just ate generic tylenol pm. Sigh. So now the third quarter's underway, I'm practically sedated. I can barely lift my limbs. 55000 screaming fans are cheering the Bears, and I'm still in agony.
Needless to say, I didn't drive home that day. It could have been worse. That day only rated about an 8 on the Oh God I Want My Head To Suddenly Go Away scale, but I learned my lesson about my injector. Bet yer ass!
Anway, now I'm rambling. Again, welcome, and: GO STEELERS!
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bpdertcdr
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Re: Getting Crushed
« Reply #10 on: May 30th, 2006, 1:23pm » |
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What a story! and... what a shame. Getting slammed at an event is horrible. Happened to me another time while on an excursion from a cruise ... the nice sightseeing boat became a disco on the return ... wanted to just jump.
Anyway ... HOORAY FOR METHERGINE!!!!!!!!!!!!! After having 10 visits from the Bastard on Saturday ... the METHERGINE completely knocked it down. Two days ... no visit ... little bit of a shadow, but able to cope.
Try it.
Mike
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unsolved1
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Welcome Mike ! Glad to hear that the Methergine is helping you. Listen to your doc and don't mix it with Triptans.
Getting slammed in public places or at public events really sucks ! I've also been there and done that. I screwed up royally one year ... I was in Talladega for a NASCAR race and left my stat dose in the car about 2.5 miles away. It was a nightmare. I got into a fight with the AL state police just trying to get help ... ended up missing the entire race. If it weren't for the paramedics and doctors, I would've went to jail ! The police couldn't comprehend that I was in that much pain from a 'headache'. They thought I was already on drugs and insane
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aprilbee
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Re: Getting Crushed
« Reply #12 on: Jun 1st, 2006, 5:29pm » |
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Welcome home!
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Thorns
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Re: Getting Crushed
« Reply #13 on: Jun 2nd, 2006, 1:19pm » |
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Mike,
I was at that game (in PGH for Memorial Day) and got hit around the 15th inning. I left my imitrex back at the Hotel and ended up missing the rest of the game. 
I'm not a chronic, but it sounds like a lot of meds are in your system. I used to be on prednisone tapers, verapamil, neurontin and imitrex. I forcefully had to detox while I was back in school without insurance and used the clusterbusters treatment with great success. I definitely prefered not taking loads of pills everday.
Now for some stupid reason I'm trying the meds again (just imitrex for the bad ones) because I have been getting nailed every day for the past two weeks. This past week I went on Kudzu root extract (thought it would be easier to obtain than clusterbusters) and the past two attacks have now come at different times and with less intensity from my normal attacks. I'm not sure if it is working or not. I may have to give it another week. If not, I may try detoxing and back to the clusterbuster method. I found that O2 and/or exercise works better for me once I was off the meds as well. Again I'm not chronic and I know it's a whole different ball game for you guys.
Best of luck. I wish I would have seen you "dancing"....I would probably have been the only person outside of your family to understand the situation.
Chris
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bpdertcdr
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Re: Getting Crushed
« Reply #14 on: Jun 3rd, 2006, 2:20am » |
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Hey Chris -
Thanks a million for checking in.
The "dance" was a special one - Remember the Church Lady from SNL??? Walking to the car which was parked closest to Heinz Field... must have taken 45 minutes. Just gotta love my wife - I'm crying, screaming, you name it.
The next day is when I just got crushed. That Bastard pushed me to the point where the wife said I was actually starting to hit myself with the wrench that I use to open the O2 tank ... Pure hell.
AMAZINGLY - when Doc K. called the Methergine script in on Sunday - immediate relief - 5 days now! Big shadow hanging right there - but no battle. LOTS OF WATER and O2 a few times.
The detox is what I'm praying for --- 2400mg of Neurontin - 720mg of Verapamil and 5 (.9mg) Methergine right now. Plus my Diovan (BP) and Lipitor. I'm like a damn junkie. All the meds make me feel like crap all day ----- but, gotta do what I can to fight that Bastard off. I can't wait for the day when I can just take a tylenol like the rest of the human race. Just can't try it yet.
Tonight I actually went and played in my league poker tourney! What a great feeling to first, actually leave the house, and second, join some friends for some fun for the first time in a long time ... (I did have the O2 tank in the trunk ... just in case) Made it through and actually finished second!
Well, enough of that -
Thanks to all once again - it's so hard to find anyone who actually understands.
Thanks for welcoming me home.
Mike ;)
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chewy
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Have you tried Lithium?
You might also want to consider a short inpatient stay for IV DHE.
I had an old Beagle who used to get up and leave the room minutes before I had an attack. If I saw her leave I'd get the imitrex ready. The mutt knew before I did.
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Linda_Howell
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Re: Getting Crushed
« Reply #16 on: Jun 4th, 2006, 10:59am » |
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Quote: 10 lpm O2 prevailed after about 20 minutes each time. Wish me luck ... especially not being able to go for the shot ---
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Mike, 10 lpm is NOT enough. It needs to be at least 15 lpm and if your regulator won't go that high, consider getting one that will. Also are you using a non-rebreather mask? That is a factor also, as well as getting to the 02 as soon as possible and not waiting til it ramps up to a 5 or 6 before huffing it.
Linda
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isshin8
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Re: Getting Crushed
« Reply #17 on: Jun 5th, 2006, 3:50am » |
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Mike
Be strong brother. I am a policer officer down here in Maryland. I know the feeling on lates and nights when I start to relax and the feeling hits.
Police, paramedics, firefighters, nurses, doctors, all the others I forgot to name, we are all warriors. We walk where others will not.
These headaches are called suicide headaches. That means the affliction will not kill us. The alternative is unthinkable.
There is no second place. All of us with clusters have traveled roads that others can't imagine.
You can do it man. Others have it worse.
Matt
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Killroy 2.0
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Re: Getting Crushed
« Reply #18 on: Jun 5th, 2006, 9:53pm » |
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Absolutely no hot dogs when in cycle. Fucking trigger for me every time. Is methergine a newer form of methesergyde maleate? Whatever it is, glad it's working for you.
Thomas posting in drag................... again. 
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