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Topic: Well I got hit with an ugly 10 over the weekend... (Read 403 times) |
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firecracker7481
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Well I got hit with an ugly 10 over the weekend...
« on: Mar 19th, 2007, 8:30pm » |
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...It ripped me one and just when I thought it could not get any worse it did...
Quick FYI for everyone...If your abortive is not working and you are on Topomax do not under any circumstance shoot caffiene...It will make you sicker than a dog...and Yes I did learn this lesson the hard way...
...Anyway after many hours (torcherous hours) later, the beast left me, bruised battered and broken. However with my handy bottle of Aleve handy I have only managed to have a few shadow since friday night and since talking to my Dr. this morning and knowing my typical pattern regarding these h/a's we are hoping that I am now over the hump and am now work down the backside slump and heading toward recovery!!!
Please keep your prayers with me, cause I could really use them right now.
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ClusterChuck
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #1 on: Mar 19th, 2007, 9:13pm » |
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Aleve works for you? You are the only clusterhead that I have heard of, that it works for. Lucky you!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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firecracker7481
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #2 on: Mar 19th, 2007, 9:18pm » |
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Nooooooooo aleve helps relax the muscles in my neck through out the day that help trigger my actual headaches themselves... It does absolutely nothing for the headaches...
I have found that if I keep myself dosed on aleve through out the day I can usually keep my count down significantly through out the day...
Unlike most ch suffers my attacks happen predominently durning the day...it is rare when they wake me up at night...
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Guiseppi
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #3 on: Mar 19th, 2007, 10:28pm » |
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For about the first 20 years I never had the night time wake up calls. Those didn't start till I was in to my 40's.
Do you have oxygen for an abortive? When all else fails I can always transition to oxygen without worrying about the affects on any other meds. Hope you're right and you're over the hump!
Guiseppi
PS.....watch the alleve.....long term use can really screw you up! I understand sometimes we just choose our poison but do be careful with it!!!
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firecracker7481
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #4 on: Mar 20th, 2007, 4:22pm » |
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Really...I have counted myself fortunate so far to not have the night time stalker haunt me yet...I am hoping to not have to deal...
My dr...wants me to find an O2 bar during my next cycle...I kinda want to laugh...like i can really drive during an attack (I can barely keep my eye open it is so painful and heavy) They just switched me over to the injections...
I used my first one definitely never hit my 10 but let me tell you i swear i heard bach or mozart in the back ground because i was dizzy an naucious for 10 mins so i laid down that went away...then life was normal... no tension in my neck and only one dose of alleve this morning...
Why have i not gotten that stuff before...seriously!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway...
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vietvet2tours
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #5 on: Mar 20th, 2007, 5:02pm » |
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on Mar 20th, 2007, 4:22pm, firecracker7481 wrote:Really...I have counted myself fortunate so far to not have the night time stalker haunt me yet...I am hoping to not have to deal...
My dr...wants me to find an O2 bar during my next cycle...I kinda want to laugh...like i can really drive during an attack (I can barely keep my eye open it is so painful and heavy) They just switched me over to the injections...
I used my first one definitely never hit my 10 but let me tell you i swear i heard bach or mozart in the back ground because i was dizzy an naucious for 10 mins so i laid down that went away...then life was normal... no tension in my neck and only one dose of alleve this morning...
Why have i not gotten that stuff before...seriously!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway... |
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You gotta be shittin me.Injections of what?
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firecracker7481
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #6 on: Mar 20th, 2007, 5:13pm » |
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Imitrex...yes...I know...I am a little behind the times...but my dr. was hesitant to put me on them as he was hoping the nasal spray would work well with out having to go to the hard hitting injections...
by the way I hated the nasal spray!!!!
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ClusterChuck
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #7 on: Mar 20th, 2007, 5:26pm » |
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on Mar 20th, 2007, 5:13pm, firecracker7481 wrote:| by the way I hated the nasal spray!!!! |
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Most do, AND it isn't as fast as the injection!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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TonyG1
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #8 on: Mar 20th, 2007, 7:43pm » |
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on Mar 20th, 2007, 4:22pm, firecracker7481 wrote:Really...I have counted myself fortunate so far to not have the night time stalker haunt me yet...I am hoping to not have to deal...
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They seem to be worse. I rarely ever get a hit while awake ... always while asleep...
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My dr...wants me to find an O2 bar during my next cycle... |
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Huh,  Best advise I can think of is get a new doc....
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I used my first one definitely never hit my 10 but let me tell you i swear i heard bach or mozart in the back ground because i was dizzy an naucious for 10 mins so i laid down that went away...then life was normal...
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Never been able to lay down at anything 6 or above ... 10 is outta the question...
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BB
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #9 on: Mar 20th, 2007, 7:46pm » |
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I just would like to know, once a hit gets to kip10 level, is it at all possible for the person to be able to do anything apart from screaming, crying and rolling around ?
I have seen my husband in a Kip10 2 or 3 times , and there was no way he could do anything to help himself then.
Or is it just him ?
Just wondering ...
Annette
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George_J
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #10 on: Mar 20th, 2007, 8:04pm » |
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on Mar 19th, 2007, 9:18pm, firecracker7481 wrote:| Nooooooooo aleve helps relax the muscles in my neck through out the day that help trigger my actual headaches themselves... It does absolutely nothing for the headaches.... |
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I can see where Aleve might help the tension in your neck, although I suspect that the neck tension is an effect of the headaches themselves, and not a cause. I went a long time believing that the swollen ganglions in my neck were somehow "causing" the headaches, and thought that if I moved my neck juuuuuust riiiiiight, I might "crack" something and stop the headaches. Lots of crunchy neck maneuverings, for years and years, to no avail. Didn't do a thing.
I think now that the headaches themselves cause the nerve ganglions in the neck to become inflamed. Stop the headaches, and stop the swollen nerve ganglions in the neck. I know the neck thing isn't universal, but a lot of us get it. It's a damned unpleasant side-effect. See the "cluster lump" thread for more information about it. Ice applied to the affected area can be very helpful.
As far as oxygen bars go, I'd be surprised if any oxygen bar would provide 02 at a flow rate of 10-15 lpm with a non-rebreather mask. My understanding of these outfits is that you get a mask that basically provides you with a whiff of oxygen, more or less, that's supposed to provide you with some salient benefit, whatever that might be. I doubt that an oxygen bar would do you much good, frankly.
Best wishes,
George
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| « Last Edit: Mar 20th, 2007, 8:17pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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George_J
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #11 on: Mar 20th, 2007, 8:15pm » |
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on Mar 20th, 2007, 7:46pm, BB wrote:
I just would like to know, once a hit gets to kip10 level, is it at all possible for the person to be able to do anything apart from screaming, crying and rolling around ? |
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I don't get 10's very often any more. The last real 10 was some years ago. All I was able to do was to crawl into a closet on my hands and knees, curl into a fetal position, and scream. So no--I can't function. I doubt that I even look particularly human.
I'm glad that 10's are infrequent. I can deal with a 7 or 8, can ride it out, but 10's are beyond my powers to cope with.
Best,
George
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| « Last Edit: Mar 20th, 2007, 8:16pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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firecracker7481
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #12 on: Mar 20th, 2007, 9:53pm » |
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all i know is i just want to run my head into a wall when i hit a 10...it is all i can do to keep from crying and freaking out... But the reality I have come to learn is to keep as still and calm as possible breath as normal as possible and it will pass...it always passes...
and besides the fact that i don't want anyone seeing how much pain i am in...i find the more agitated i get, the worse it makes the pain... plus I usually end up over the toilet when it gets that bad anyway...It is a lose lose situation so I prefer to try and face with as much dignity and sanity as I muster...I feel like it is the only thing that it can't take away from me when I get them...
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Superpain
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #13 on: Mar 22nd, 2007, 3:45pm » |
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An O2 bar wouldn't provide 10% of the O2 you need.
I'd suggest to your docter he find his pen and script pad and do his job. 
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Chris
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chrisw
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #14 on: Mar 22nd, 2007, 9:41pm » |
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i never believed o2 really helped until i got the right mask and tank. i cant bellieve the difference since i got the non rebreather mask, and the 15lpm flow. i can usually abort an attack, way before it gets too bad now. i havent had to use an imitrex shot for about 3 weeks now. I have been getting hit about 4 times a night, and i know some of them would have escalated to kip 10 without the 02. but the worst i am getting now is about a 5 or 6.
really, get the mask and tank, you wont believe the difference 
good luck
chrisw
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firecracker7481
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #15 on: Mar 23rd, 2007, 4:43pm » |
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Well my longest cycle I have had has been 6 weeks, I am just getting ready to complete week 4, so I am hoping that I coming to an end of this craziness...
The reality of this cycle is that I have handled it by far better than any of my others with the fact that I have only missed 4 days of work due to it...and have been able to keep some sort of normalacy to my life...now if I keep with my normal routine my cycle will last probably about 6 weeks which means I have another 2 weeks to go...
On the upside...My dr. is amazing and pulled something off with my insurance that is helping me get some great discounts on my meds...how they pulled that off I do not know...but I will not complain...I can only be thankful...
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Spoticus
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #16 on: Mar 26th, 2007, 10:22am » |
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on Mar 20th, 2007, 7:46pm, BB wrote:
I just would like to know, once a hit gets to kip10 level, is it at all possible for the person to be able to do anything apart from screaming, crying and rolling around ? |
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Personally when I hit 10 my thoughts swap to "this much pain makes life not worth living" sort of thing. I don't get suicidal or anything, but for me a 10 is the only time that thoughts like that cross my mind.
Personally no, I cannot care for myself in a kip10. I don't scream too much. I often try scream but it inevitably dies in my throat. I don't cry either, at least not proper crying, my eye is usually streaming tear drops though. I do more of my walking an moving at a 9, at a 10 I basically curl up in a chair or on the floor an just bang my head progressively harder hoping I don't actually do it too hard.
Really though my memories of what I do during a Kip10 are pretty vague. The first time it happened (before I was diagnosed) someone called me on the phone. I answered had a conversation and told them I was well etc. I have no memory of that conversation happening, why oh why didnt I tell them I needed help lol. I find in a Kip10 I have trouble holding a thought for more than 7 or 8 seconds.
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| « Last Edit: Mar 26th, 2007, 10:22am by Spoticus » |
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MathenyMan
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #17 on: Mar 26th, 2007, 3:38pm » |
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I'm the same way. Only, I dont think I'd give them the benefit of an 8 second time frame. My level 10's are alot like dreams.I can remember exactly what I was doing leading up to it, then I remember being awake, "coming down". Sometimes if it were that bad, I'd pass out and just awake hours later and that really didnt help with it resemblingke a dream.
Then we can go into me finding out I could avoid a headache if I avoided falling asleep....But thats another story. Kinda screwed me up in a Freddy Kreuger kinda way lol.
P.S. I found out about the Topomax and Caffeine the hard way too man. Tough luck. PFDANs!
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What does it feel like? Let me think...Have you ever had something try and eat its way out of your brain? Me either, but I'd imagine it feels something like a CH.
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pieface_49
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #18 on: Mar 26th, 2007, 9:38pm » |
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This cycle there have been about 5 episodes where I have completely lost all sensory perception. These bad episodes have lasted between 4-6 hours. I snap out of no perception to having some and back into lala land. I am very aware of the pain and all my cognitive skills are on putting as much pressure on my temple, pushing on my sinus cavity, perhaps smacking or punching myself, massaging the back of my neck where the trigeminal nerve enters the brain or putting as much pressure as possible under my cheekbone. The TV may be on, the lights may be on. I see or hear absolutely nothing. There is only pain, on/off/on/off... Crazy thoughts such as drilling a hole in the side of my cheekbone or cutting out this area may be better than the pain I am experiencing. To me, this is my nightmarish 10. I also know when it is ending. I can then hear the TV and see the lights and surroundings.
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testy01
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Re: Well I got hit with an ugly 10 over the weeken
« Reply #19 on: Apr 21st, 2007, 10:05am » |
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on Mar 20th, 2007, 7:46pm, BB wrote:
I just would like to know, once a hit gets to kip10 level, is it at all possible for the person to be able to do anything apart from screaming, crying and rolling around ?
I have seen my husband in a Kip10 2 or 3 times , and there was no way he could do anything to help himself then.
Or is it just him ?
Just wondering ...
Annette |
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BB
I've had these things for over 10 years now and have had a few "10s" during that time. I mostly cry and curse and bang my head on things, gently at first but getting harder as time goes on. I usually TRY to walk but it doesn't help. I can't see well at all and my motor coordination is extremely poor so I tend to stagger into things and break them.
Hope that helps.
Jack
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