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Topic: When the cluster's over and your head still hurts? (Read 767 times) |
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drhbooks
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When the cluster's over and your head still hurts?
« on: Jun 28th, 2005, 10:44am » |
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Hi: I've suffered from cluster headache for about 14 years now. Just started a new 'round' after over a year of being cluster free.... Tried a few preventatives, topamax made me crazy, and verapamil didn't help. none of the pain killers were effective, some of them made me high, but the pain was still there big and bold and highly prominent... Finally got onto oxygen about 3 years ago and it has helped...
My question is this... often after a true cluster headache ends I'll have residual pain for several hours. About as severe as a standard noncluster headache...anybody else experience this?
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fat___pam
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Re: When the cluster's over and your head still hu
« Reply #1 on: Jun 28th, 2005, 10:55am » |
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Hi, Im a supporter, bf has clusters and has for 20 + years. I asked him last night how he felt and he said he had a HA but not a REGULAR HA. Sad to say a cluster is a REGULAR headache, but the rest of his head hurt and not his typical behind the eye pain. I don't know why, maybe tension or stress of trying to deal with it? I bet you will get some good answers though and thanks for asking. He also has been getting lower level clusters that seem to last longer lately.
Are theses what people call shadows?
C
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Bob_Johnson
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Re: When the cluster's over and your head still hu
« Reply #2 on: Jun 28th, 2005, 11:06am » |
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Yes, some residual pain is common with me. I don't have an "official" explanation but have written it off to a kind of irritation of the nerve pathways which are associated with clusters.
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Bob Johnson
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Margi
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Re: When the cluster's over and your head still hu
« Reply #3 on: Jun 28th, 2005, 11:22am » |
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on Jun 28th, 2005, 10:55am, fat___pam wrote:Sad to say a cluster is a REGULAR headache
C |
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um....pardon? Am I misunderstanding you here? Cluster is about the furthest you can get from a regular headache. What did you mean by this?
Drhbrooks, are you on any other meds now? Residual pain is pretty common after an attack. Shadows are usually referred to as the 'precursor to the pain', meaning that they are a signal that an attack is coming. If you're on meds, though, they can cause rebounds. Rebounds aren't clusters, they are more of a med-hangover headache. Triptans can increase the frequency of clusters.
You might find that using some more oxygen will get rid of your residual pain - sometimes that helps for my husband. That, or laying an icepack (frozen peas/corn in a pinch) directly on the pain. Or drink lots of water. Not a great idea, though, to try to sleep it off. If it IS a shadow, letting yourself sleep is kinda like opening the lion's cage door.
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| « Last Edit: Jun 28th, 2005, 11:22am by Margi » |
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bnfreeman
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Re: When the cluster's over and your head still hu
« Reply #4 on: Jun 28th, 2005, 11:29am » |
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I get the same thing alot. I would say it is a shadow. Not a full blown CH.
Margi I think she was saying her boyfriend calls his clusters a regular HA. He was saying he had a HA but not like his regular ones, that being a cluster.
BF
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fat___pam
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Re: When the cluster's over and your head still hu
« Reply #5 on: Jun 28th, 2005, 11:35am » |
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For my bf clusters are REGULAR.. they are what he gets every day 6 times a day, or more. Are the regular in a sense that they are no big deal or that the don't hurt. Absolutely not. They are just what he knows. Lately other headaches have been happening that he doesn't understand. He feels like those are the irregular ones. The non normal/cluster ones. I say its sad because who wants to have a cluster be your every day regular routine. For right now thats the regular routine for him. I guess he expects excrusiating pain and when he only gets a little pain its confusing because it usually doesn't happen. He isn't on any medication right now, except kudzu. We have appointments next month.
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marlinsfan
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Re: When the cluster's over and your head still hu
« Reply #6 on: Jun 28th, 2005, 12:33pm » |
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I get the dull residual pain too once in a while, not always, I thought that those were the shadows. A strong cup of coffee usually gets rid of most of the residual.
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ClusterChris
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Re: When the cluster's over and your head still hu
« Reply #7 on: Jun 28th, 2005, 12:51pm » |
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I often get the same pain afterwards. 95% of the time a couple extra strength tylenol does the trick. Give it about half an hour to kick in!
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drhbooks
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Re: When the cluster's over and your head still hu
« Reply #8 on: Jun 28th, 2005, 3:08pm » |
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Thanks for all of the great replies! Great to know that i'm not the only one to have this symptom...only other meds I'm on are for high blood pressure, and don't think they are relevant to this pain... I've tried the tylenol with mixed results, so I'll add strong coffee to the arsenal for next time!
As far as sleeping goes-- I know that is a prime way to open the beast's cage, but we all do need to sleep sometime. (at least I do!) and if I make it through a few hours the residual headache is usually gone...
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5-string
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Re: When the cluster's over and your head still hu
« Reply #9 on: Jun 28th, 2005, 3:13pm » |
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I usually get residual pain. I also have experienced what are know as "shadows" that can last a few months after my last attack.
...Mark..
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burnt-toast
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Re: When the cluster's over and your head still hu
« Reply #10 on: Jun 28th, 2005, 5:23pm » |
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on Jun 28th, 2005, 10:44am, drhbooks wrote:
My question is this... often after a true cluster headache ends I'll have residual pain for several hours. About as severe as a standard noncluster headache...anybody else experience this? |
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Depending on the severity of a nights clusters I can have hyper-sensitivity to the affected parts of may head and face and eye that lasts until about noon.
Tom
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Kiwiinoz58
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Re: When the cluster's over and your head still hu
« Reply #11 on: Jun 28th, 2005, 7:27pm » |
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Good question that and noone really seems to have the answer as we are all so different. I've had no PF days for the last 2 weeks. Starts between 9-10:30am and continues at varying rates of pain till 6pm ish. But the last 3 days at around 8pm I've been getting what seems like the regular migrains I used to get. Just what I needed !! 
Cheers,
Jacqs
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kcopelin
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Re: When the cluster's over and your head still hu
« Reply #12 on: Jun 29th, 2005, 12:50am » |
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I can related to feeling like non-cluster headaches are not regular- after a bad hit the headache goes away but there is residual soreness. A couple of weeks into the cycle-after alot of sleep deprivation-I get " regular" headaches that extra strength tylenol and really strong coffee can ususally chase away.
PFDAN
Kathy
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Topical
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Re: When the cluster's over and your head still hu
« Reply #13 on: Jul 3rd, 2005, 4:31pm » |
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I have had a CH remnant or 'shadow' stay with me on a few occasions. My neck also has remained sore. I put it down to the stress or trying to function while having an attack. The pain level is very low when this happens. Just very nagging and fightening as you feel like the beast can come back again. It may happen after a series of CH headaches over several days. I am just sore at that point and frustrated.
Have you noticed any pattern to the remnants or is it completely random? I wish you the best - take care.
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clarence
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Re: When the cluster's over and your head still hu
« Reply #14 on: Jul 4th, 2005, 2:55am » |
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Sometimes after a cluster I have no pain. Sometimes I have shadows. Sometimes I have an entirely different type of headache (migraine, tension). Each is different, cluster is the worst, and I like pain free the best.
Casey
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ultio
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Re: When the cluster's over and your head still hu
« Reply #15 on: Jul 4th, 2005, 9:06pm » |
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Yeap I am usually lurking in the shadows for awhile sometimes weeks. I happen to be there now, Had my first occurance in over a yeqar today. It came on like a shot, was crippeling for 15 min or so the disolved like cotton candy in my mouth. Now I am in shadow land waiting for the next round. It never comes alone.
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JohnM
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Re: When the cluster's over and your head still hu
« Reply #16 on: Jul 5th, 2005, 8:25am » |
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I am often totally clear headed and feel ok after the CH has passed. Other times I have a sore temple and eyeball area and a nagging but bearable headache. Other times I get a migraine-like throbbing HA that just won't budge and can last for hours until the next big CH comes along.
Nothing ever remains the same with this affliction. My policy the last 3 years is to stay away from any sort of preventatives and painkillers and rely on the trex injection which works every time, and a detox to try and break the cycle as quickly as possible.
18 months PF so far which I put down to a detox whenever I feel the "warning signs" of a CH cycle beginning.
John
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millie the episodic
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Re: When the cluster's over and your head still hu
« Reply #17 on: Jul 7th, 2005, 10:38am » |
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 Hey I know this may sound crazy, but after the night I had with my Mister lastnight I guess I could qualify as crazy, but.. I figure that our heads could be sore after a episode because whatever it is in our head that is causing all the hell has probably bruise something in there or could it be from the knocking back that we sometimes do to try and fight the H/A back? Or could the CH be doing sometime to us, because I know that I look like hell after it is over and I feel like hell to! Stay strong and keep all sharp objects and guns locked up!!!
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tenacious
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Re: When the cluster's over and your head still hu
« Reply #18 on: Jul 9th, 2005, 7:40pm » |
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on Jul 4th, 2005, 2:55am, clarence wrote:Each is different, cluster is the worst, and I like pain free the best.
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Got that right!!  PFDAN to all.
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Ang
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steffie
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Re: When the cluster's over and your head still hu
« Reply #19 on: Jul 9th, 2005, 11:17pm » |
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Hello to all! I am brand new to this and would like to say how wonderful it is that I'm not alone in this hell anymore! I actually started to cry! I too suffer pain after the cluster is over- in my jaw,back of my neck behind my eye and sharp pains that come and go. I am peaking right now and I will tell you it is very difficult to determine when it's the residual of the one that just ended or the sign that one is coming. I have found that sitting with a hot pack over my eye and sinuses is comforting though, and long hot showers 
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Topical
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Re: When the cluster's over and your head still hu
« Reply #20 on: Jul 10th, 2005, 3:26am » |
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steffie - yes this place is a blessing! Take the cluster quiz if you haven't and start reading up. Lots of info around here. Hope you are seeing a good doc who is helping you out. I'm sorry to hear you are getting hurt too.
Luckily, for me my jaw actually never goes out on me. Although, I can get a nice cramp going if I open my big mouth too much. 
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StressFree
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Re: When the cluster's over and your head still hu
« Reply #21 on: Jul 12th, 2005, 6:55pm » |
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Again, welcome Steffie. Sorry you are suffering with us, but glad you've joined us never the less. I can relate to the - not sure if residual pain from one ending or sign of another beginning. I've had residual in temple/jaw/and neck. Also JMorgan52 said
Quote:| am often totally clear headed and feel ok after the CH has passed. Other times I have a sore temple and eyeball area and a nagging but bearable headache. Other times I get a migraine-like throbbing HA that just won't budge and can last for hours until the next big CH comes along. |
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This sounds very familiar to me as well. This thread kind of goes along with the "Describe Your Cluster Pain" topic. Very interesting, although, I believe we need a "They found a definate cure" topic! Rich
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wip5150
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Re: When the cluster's over and your head still hu
« Reply #22 on: Jul 12th, 2005, 10:05pm » |
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After most HA's my hair hurts. I know many of you all experience this as well but sometimes, espeically after a long and juicy K10, the slightest amount of wind or movement in my hair will almost cause my knees to buckle.
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| « Last Edit: Jul 12th, 2005, 10:05pm by wip5150 » |
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hdido
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Re: When the cluster's over and your head still hu
« Reply #23 on: Jul 12th, 2005, 11:18pm » |
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Sometimes during a bad attack it HURTS to take a shower-the left eye and left side of my face, so some days I don't...bless the person who invented cologne!
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StressFree
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Re: When the cluster's over and your head still hu
« Reply #24 on: Jul 13th, 2005, 11:26am » |
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Have had the "hair hurting" experience. Not all the time. Recently had entire scalp feeling very sunburnt. Especially while taking hot shower. Not sure if effect of Verapamil and Maxalt plays a role. Seems to be more prevelant when I would have been having an attack, but it doesn't break through due to the meds. Thank God! I'll take the tingling/burning/sunburnt scalp/hair hurting over full blown cluster any time! Hoping yours are few and far between, Rich
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