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Topic: Strange New Pain - Any Ideas? (Read 739 times) |
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BC_Battler
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Strange New Pain - Any Ideas?
« on: Jan 24th, 2008, 8:11pm » |
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Hey everyone -
I've been a CH sufferer for about two years now. I was diagnosed by a neuro pretty quickly, had a CT scan done, and have been battling the Beast ever since. I have all of the classic signs of CH.
I was episodic in year one, but since January of last year I haven't gone more than two weeks without CH pain. 2007 was a long, painful year.
My cocktail of meds is still being fine tuned. I am currently taking 720 mg of verapamil a day, + Sansert (methysergide) at 12 mg a day. I've been on this mix for a month or so, and it was working pretty well until recently.
Last week the CHs blasted through the meds - I went from having a few shadows a day to having 3 or 4 kip 9s a day. In addition to the CH headaches, I was also getting hit with some new ones - headaches that were like lightning bolts blasting through the top of my head. It was the strangest sensation. They differed from my normal CHs in that they would feel as though they were blasting from the top of my skull inward, and they would hit so fast and so hard they almost knocked me off of my feet a couple of times. These would usually precede a normal CH, which often would come soon afterward (but not always). This phenomenon is new, and I have no idea what the deal is.
Has anyone else experienced anything like this? CH attacks in addition to this lightning bolt attack through the top of the skull? The top of the skull is where I really feel it (instead of behind the eye with my normal CHs, and this is every bit as painful as a CH). I know it sounds strange, but that's the best way I can describe it.
This is such a drag, because after more than a year of getting smoked pretty much every day, I thought I was actually getting a bit of a break for a bit. Now, not only are the CHs getting through the meds after a short break, but this new pain, too. I can deal with the CHs - I'm used to that - but this new complication is leaving me reeling a bit.
Any thoughts on these lighting bolt attacks? I really appreciate this board and all the support offered - it truly is an amazing place. Thanks all -
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Gator
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Re: Strange New Pain - Any Ideas?
« Reply #1 on: Jan 24th, 2008, 9:15pm » |
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Many clusterheads also suffer from other headaches as well. I get the odd ice pick in the brain now and then. Recently, I went through about a week of having something that felt like being hit with the round end of a ball peen hammer in the occipital area on my cluster side. It hurt like hell, but the pain only lasted a split second or two. It was frickin annoying, but just about the time I decided to do something about it, it just went away.
Make sure you keep your doctor posted on any changes to your headaches. You might try looking up "Ice Pick" headaches and Idiopathic Stabbing Headaches on Google.
Good luck!
Mike
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BC_Battler
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Re: Strange New Pain - Any Ideas?
« Reply #2 on: Jan 24th, 2008, 11:03pm » |
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Thanks Mike.
Your thoughts are appreciated. I'll check out your suggestions on google.
Cheers!
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Ace
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Re: Strange New Pain - Any Ideas?
« Reply #3 on: Jan 24th, 2008, 11:11pm » |
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I had the lightning bolt thing once. I was screwed up on all my meds, got a headache, then got a shock.
Don't know what it is. I assume it's not good. I haven't had any except that one time. If it continues I would go to neuro or the ER.
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Re: Strange New Pain - Any Ideas?
« Reply #4 on: Jan 24th, 2008, 11:33pm » |
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on Jan 24th, 2008, 11:11pm, Ace_Sterling wrote:I had the lightning bolt thing once. I was screwed up on all my meds, got a headache, then got a shock.
Don't know what it is. I assume it's not good. I haven't had any except that one time. If it continues I would go to neuro or the ER. |
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MJ
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Re: Strange New Pain - Any Ideas?
« Reply #5 on: Jan 25th, 2008, 12:06am » |
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BC
The attacks you describe are much the same as I would get in the past on a fairly regular and routine basis.
For me it was allways in the temple they hit. Its like being shot by a bullet. You can allmost and sometimes actually hear a snap and then its gone.
They would hit anytime anyplace though seldom preceded a full cluster hit for me. They never really seemed to cause any harm to me other than wondering what the hell was that every time I got zapped.
Another symptom of these is your face may become pale, your skin gets cold, and a bit of light headedness may occur after. this passes quickly.
Over time I have seen a few others reference these. Yet no doc could ever diagnose them.
When I first came here I assumed everyone got them but they seem fairly rare.
I allways called them a bullet attack due to the severity and speed of the hits. You will hear many names for them.
Interesting to note that since I gained some control over my CHs these have disappeared as well after 30 pus years of them.
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outofcommission
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Re: Strange New Pain - Any Ideas?
« Reply #6 on: Jan 25th, 2008, 2:08am » |
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i am med free. i am a big believer in o2. i take 2 tylonol for a dull shadow across the face. no more than 2 every 2 or 3 days. other than that and kudzu thats pretty much all i use and doing pretty good. on my last cycle i didn't have o2 or this board. the more aspirin, ibuprofen, and coffee i would consume the worse it got. i'm talkin 8 to 10 good screamers a day. for about 2 weeks. scared the crap out of my neighbors and coworkers. i quit taking all the garbage (over the counter) and 3 days later my cycle ended. i don't know if i was at the end of cycle just shocked into remission from not taking those useless pills. about that time my family doctor told me well i think you have cluster headaches. since the pain was gone i put it behind me. before u decide to do anything with your meds check with your doctor. any thing new you try give it about 2 or 3 days ride out the bad ones with o2. also remember that nothing will instantly help when your face is on fire. this time around i have been very patient which is hard to do when you get 4 or 5 kip 8s a day. and one last thing, if you can't sleep which allot of us can't get on the board and feed your brain. with help from group form yourself a battle plan then attack. remember the devil is a sneaky bastard. pick away at him slow and steadily. all that stuff helped me this time around, were al different but i hope it helps you. best wishes man. you'll get through this.
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mummymac
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Re: Strange New Pain - Any Ideas?
« Reply #7 on: Jan 25th, 2008, 2:47am » |
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on Jan 24th, 2008, 8:11pm, BC_Battler wrote:
Last week the CHs blasted through the meds - I went from having a few shadows a day to having 3 or 4 kip 9s a day. In addition to the CH headaches, I was also getting hit with some new ones - headaches that were like lightning bolts blasting through the top of my head. It was the strangest sensation. They differed from my normal CHs in that they would feel as though they were blasting from the top of my skull inward, and they would hit so fast and so hard they almost knocked me off of my feet a couple of times. These would usually precede a normal CH, which often would come soon afterward (but not always). This phenomenon is new, and I have no idea what the deal is.
Has anyone else experienced anything like this? CH attacks in addition to this lightning bolt attack through the top of the skull? The top of the skull is where I really feel it (instead of behind the eye with my normal CHs, and this is every bit as painful as a CH). I know it sounds strange, but that's the best way I can describe it.
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Hello BC wellcome to clusterville
I to had pain through the top of my skull for the first time this cycle, never ever had it before.
Mine starts as a dull ache at the top of my head then gets worse very quickly , in full flow feels like I have a spike going down from top of my head and out through the roof of my mouth. I too have had them without the pain in the eye ( but not often) Half of my attacks start with the pain at top of the head and half with the pain behind the eye. Then I feel like something from a torture chamber, spikes down through the head and sideways through the eye. Last cycle I suffered very badly with pain in the ear and teeth as well as the eye but this time it was the top of the head.
I was more scared of the pain in the top of the head because it was new to me and I did not know how to deal with it. I do not know which one was more painfull, the eye a little bit, but both togeather was pure hell.
I have also noticed that nearly every one is stating this is their worse cycle yet and that the pain is much worse this time around, myself included.
Is this because we forgot how bad it is when it is over?
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Tanya
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George_J
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Re: Strange New Pain - Any Ideas?
« Reply #8 on: Jan 25th, 2008, 3:01am » |
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Not sure if this is what you're talking about, but...
I frequently get one or more "icepick jabs" near the end of an attack--in fact, it's often the signal that the attack is ending. Blam! Then the CH ramps down. Now and then, when I'm in cycle, the same thing happens out of the blue, even when a CH isn't going on. Just...Blam!...then nothing.
Hurts. A lot. But it doesn't really last long--only a second.
Best,
George
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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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mummymac
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Re: Strange New Pain - Any Ideas?
« Reply #9 on: Jan 25th, 2008, 3:24am » |
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on Jan 25th, 2008, 3:01am, George_J wrote:
Hurts. A lot. But it doesn't really last long--only a second.
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George
this may be what BC is talking about, but mine last as long as the CH attack, I do get shooting pains from the ear direction that are seconds long, but the top of the head is like having two CH at the same time but in different places, I think it is just a different part of that nerve(cannot spell it) kicking of along more than one of its branches
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Tanya
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Stinger
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Re: Strange New Pain - Any Ideas?
« Reply #10 on: Jan 28th, 2008, 1:11pm » |
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I get a few of the lightning bolts as my headache is starting to go down. You know how good it starts feeling when you know it has maxed out and then starts decreasing. And then I usually get a couple of strong bolts as if to tell me not to feel too good too fast.
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thomas
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Re: Strange New Pain - Any Ideas?
« Reply #11 on: Jan 28th, 2008, 2:10pm » |
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Could be sunct or CPH. At least that's always been what I've thought.
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E-Double
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Re: Strange New Pain - Any Ideas?
« Reply #12 on: Jan 28th, 2008, 6:25pm » |
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I also get icepicks.
It hurts like the dickens for a split second then you are fine. A couple of yrs ago I was getting literally hundreds of zaps per day. indomethacin knocked them back
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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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thomas
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Re: Strange New Pain - Any Ideas?
« Reply #13 on: Jan 28th, 2008, 6:33pm » |
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on Jan 28th, 2008, 6:25pm, E-Double wrote:I also get icepicks.
It hurts like the dickens for a split second then you are fine. A couple of yrs ago I was getting literally hundreds of zaps per day. indomethacin knocked them back |
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Probably CPH if indomethacin worked for it.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Re: Strange New Pain - Any Ideas?
« Reply #14 on: Jan 28th, 2008, 6:42pm » |
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on Jan 28th, 2008, 6:33pm, thomas wrote:
Probably CPH if indomethacin worked for it. |
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indomethacin works for dozens of other headache types. It wasn't PH (episodic nor chronic) as it wasn't a unilateral ha lik clusters.
It was literally zaps across the skull. Diagnosed as idiopathic stabbing headache by good ole Fred Sheftell.
Anywho I had to come off the indomethacin which was a bitch to try lithium for the clusters.....
Medfree these days but still get a f-en variant of an icepick as Sheftell calls it which feels like someone is literally flicking at the top of my skull. doesn't hurt but is annoying. I developed that on at Dallas Convention '05....maybe this year I'll get something really cool lmao
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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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LetItSnow
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Re: Strange New Pain - Any Ideas?
« Reply #15 on: Jan 28th, 2008, 8:47pm » |
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I have also noticed that nearly every one is stating this is their worse cycle yet and that the pain is much worse this time around, myself included.
I thought I was done with CH with 180mg of verap. But 6 weeks ago I got hit by the beast for the first time in 2 1/2 years - I am up to 360mg verap, and I still get the shadows, it is either that or the verap is working better, but it does seem that it is bad this time around. O2 works, as long as I am using- other wise it is a constant k2 or k3. Never had a cycle last this long.... but I will take it over the k9 and k10 I used to have.
With these k2-3s I also have the lighting bolt for a split second (when in a k9-10, these usually came just before the beast ran away) - I also have this annoying "knot" or very localized pain in the CH side in my neck, like someone took a needle and stabbed me.
and my last strange pain... is a dull ache down my arm and back on the CH side...
I should mention that my CH have switched sides between cycles and within a cycle, but 90% are on my right side.
Hang in there! we all have weird pains , and I have done nothing but learn that we can learn from each other! Good luck !
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DonnaH_again
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Re: Strange New Pain - Any Ideas?
« Reply #16 on: Jan 28th, 2008, 11:36pm » |
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Those of us who have used Sansert have been advised that it is a very nasty drug and not one needed for clusters. Please do some research on this drug.
If you do have ice pick headaches (CPH), Indo will be the drug of choice.
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thomas
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Re: Strange New Pain - Any Ideas?
« Reply #17 on: Jan 29th, 2008, 8:42am » |
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on Jan 28th, 2008, 11:36pm, DonnaH_again wrote:Those of us who have used Sansert have been advised that it is a very nasty drug and not one needed for clusters. Please do some research on this drug.
If you do have ice pick headaches (CPH), Indo will be the drug of choice. |
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I agree that sansert is very nasty, however in my experience it is a very effective preventive for CH.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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