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Topic: Do people suffer different severity of CH? (Read 2725 times) |
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E-Double
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Re: Do people suffer different severity of CH?
« Reply #25 on: Sep 19th, 2005, 7:39am » |
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Sometimes after weeks of waking up in severe pain your body gets used to waking up at a certain time.....hypothalamus...body clock
So eventhough you are not in severe pain it is enough that you are startled.
It could mean you are ending cycle or it could mean you have a late night craving for fish and chips.
Who knows 
Enjoy whatever PF time you have and other than the things that truly effect your health, try not to worry about it.
Best,
Eric
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #26 on: Sep 19th, 2005, 11:37am » |
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Went to the doctor who has prescribed me with some more Imigran (12 this time - woohoo!) although only the tablets. I asked about the injections but she said if I could tolerate the tablets then she would rather I have them. Pah!
She has referred me to a neurologist, but not as an urgent case. In NHS speak, this means I will probably have an appointment in about a years time.
At least I'm a step closer to getting a proper diagnosis.
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Ghost
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Re: Do people suffer different severity of CH?
« Reply #27 on: Sep 19th, 2005, 2:00pm » |
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Hi kevin first of all.
I know I am not an expert but from everything you have described it does sound like CH, but as others have said you need to get to neuro find out for sure, and rule out anything else too. There are some here that are sceptical pardon my spelling, but we get alot of trolls trying to sell either products or just start trouble. From what you are describing again I am not an expert but it does sound like CH. I hope you can hang around and help when others need it and get help when you need it. Sorry you had to find us but at least you are not on your own. Good luck beast hunting, and hope like he11 it aint the beast.
Mike
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kelliev
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Re: Do people suffer different severity of CH?
« Reply #28 on: Sep 19th, 2005, 8:02pm » |
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i just remembered a time several years ago i had ha like you are explaining as well as the cluster ha and my neurologist told me they were rebound headaches, caused by a medication i was on for the cluster headaches...they came at the end of my cluster cycle and laster a month or so...no where near as bad as a cluster headache, the medication i think caused it was prednisone ? steroid i think....in the 15 years ive been a cluster headache sufferer i cant say ive been able to do anything whilst in a ha other than go crazy with the pain....also i gave birth ..it took 13 hours with no pain relief at all
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12gagueblast
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Re: Do people suffer different severity of CH?
« Reply #29 on: Sep 23rd, 2005, 8:56pm » |
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I would say it is very possible that you have CH. When mine started many years ago I would just get a killer headache once in a while and that would be it. There was no pattern and no clustering of the headache, they wouldn’t wake me ever either. The pain was CH but the pattern was not. Over the course of about 6 years they developed into the classic CH. I think it is very possible that you may have CH. I can do a lot of things when I am having one if it is up to about a KIP 4 or 5. If you look at the kip scale it says pretty much just that. You may be lucky enough to have not had a higher Kip than that. But I GUARANTEEEEEEE once you get to a KIP 10 (which I hope you never do) you won’t be playin’ no golf Superman drops to his knees on a Kip 10. Hope that helps.
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don
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Re: Do people suffer different severity of CH?
« Reply #30 on: Sep 25th, 2005, 7:20am » |
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Quote:| so don't go judging someone because they could golf through a 4-5 kip. |
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If it were truely a 4-5 CH you would not continue palying golf.
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12gagueblast
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Re: Do people suffer different severity of CH?
« Reply #31 on: Sep 25th, 2005, 10:54am » |
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Do we all need a refresher?
Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful
Pain level 2
More persitent shadow's
Pain level 3
Shadow's are getting constant but can deal with it
Pain level 4
Starting to get bad, want to be left alone
Pain level 5
Still not a "pacer" but need space
Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's
Pain level 9
The "Why me?" syndorme starts to set in
Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.
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Paul_H
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Re: Do people suffer different severity of CH?
« Reply #32 on: Sep 26th, 2005, 3:21am » |
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Kevin
I think everyone's Ch is different - different meds work for different people, some are ECh, some are CCh etc - if you do have Ch then you do have the capacity to go kip 10, and you DO NOT want to go there! It doesn't have to there every time and the 6/7/8/9s are bad enough!
I was prescribed the tablets at first as well and believed them to be having some effect until it was explained to me that many attacks only last 30/45 minutes and that what I thought was the tablet working was the attack coming to an end on its own!
GPs are reluctant to supply the sprays and injections on the grounds of cost, I believe, as it affects their surgery prescribing budgets, unless they are certain about what they're dealing with.
Get to a headache specialist neuro and get diagnosed. I paid to go private - about £200 - which I consider money well spent.
take care
Paul
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #33 on: Sep 26th, 2005, 5:23am » |
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It seems my headaches, CH or no CH have come to an end. I'd been getting them a good three weeks before I went to the drs and even knew that CH existed, so there is a fair chance that my cycle has just come to an end - or maybe they were something else completely.
The earlier headaches were the most painful, before I found this site, and they were lasting over two hours. Would I have been able to play golf through these - I don't remember. The problem is, what do you do if you are in the middle of a golf course? Towards the end they were only lasting 15 mins, but its difficult to know whether that was a result of the tablet I was taking or if they were just coming to an end. Is it usual for CHs to get less severe and over and done with quicker towards the end of the cycle, or do they go out with a bang?
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Paul_H
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Re: Do people suffer different severity of CH?
« Reply #34 on: Sep 26th, 2005, 10:05am » |
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Trouble is there isn't really a "usual" that you can judge yourself by - mine were deemed 'classic CH' by the neuro but the more I find out the less I would like to comment as to what is usual. Mine tend to build up to a peak and then dwindle away - becoming less severe and less frequent and then a week or so pain free, then 1 or 2 near the top of the scale as if the b@stard is saying au revoir!
If you do decide to look further into CH then this link might prove useful for GB advice on how to tackle the NHS.
http://www.clusterheadaches.org.uk/cgi-bin/yabb/YaBB.pl
take care
Paul
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BlueMeanie
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Re: Do people suffer different severity of CH?
« Reply #35 on: Sep 26th, 2005, 6:57pm » |
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If your cycle just started alot of times the beginning of a cycle will start with shadows for a few days. If it's real CH's, those shadows will transform into full blown nightmarish CH's. When that happens, there is no such thing as playing golf (unless it's to bounce the ball off your head a few times).
PFDAN
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #36 on: Dec 6th, 2005, 8:45am » |
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Not been around for a while. I've had no headaches - that's why!! 
Anyway, finally got my neurologist appointment yesterday. He thinks its definately CH and has presecribed me some meds to take at the onset of my next cycle.
He really didn't like the fact I'd researched everything on here. Asked me whether I'd look on the net if a mechanic told me I needed new spark plugs. He was a bit of a thingy to be honest. ho hum.
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Beastfodder
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Re: Do people suffer different severity of CH?
« Reply #37 on: Dec 6th, 2005, 11:09am » |
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Wow - there's a healthy cross section of views here.
I don't think anyone can remotely diagnose you as having CH or not. You're very, very lucky you've a GP who's 'CH' aware and it won't take long either way to get to the bottom of things.
As far as the headaches are concerned they can go from bad to worse over the years (not unlike your typical game of golf).
Fortunately for some of us KIP 10 headaches are rare - I've just had two or three which rendered me into a lump of tenderised, yelping, bawling meat over 8 years.
Best of luck with the old head
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zwibbs/Scott
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Re: Do people suffer different severity of CH?
« Reply #38 on: Dec 6th, 2005, 1:48pm » |
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I agree with a previous poster that there is no way that you are playing golf through an attack. HOWEVER, every individual has their own pain threshold, and I would NEVER be critical of anyone with CH'S. It just might be that you aren't experiencing an true Cluster Attack. Once a very good doctor hears you describe what the experience is like ,they'll be able to diagnose what it is. At any rate good luck !
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seasonalboomer
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Re: Do people suffer different severity of CH?
« Reply #39 on: Dec 6th, 2005, 2:14pm » |
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Fully agree that with a Kip 5 and above you're not hitting the links. But many have gutted out a lot of crazy shit while suffering. I've refereed hockey games, ran marathons, golfed, and any other range of behavior with lower level hits. Granted, you aren't extracting a lot of enjoyment out of the activity but there are some activities that don't offer an easy exit.
scott
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mynm156
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Re: Do people suffer different severity of CH?
« Reply #40 on: Dec 6th, 2005, 11:43pm » |
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Mine vary since going Chronic I get more lower kips just more frequent
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Spike_Inmyeye
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Re: Do people suffer different severity of CH?
« Reply #41 on: Dec 7th, 2005, 4:18am » |
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Golf has caused many headaches in my life but a it is impossible, for me, to play with a CH. I played once where I walked off the course after 3-4 holes, sucked o2 in my car then tried to continue the round. There was no way I could swing due to the residue of the CH, it is impossible to explain a CH to the people you are playing with ("having a stroke? Well you took quite a few back there . . . hahahaha" so I was embarassed and pissed therefore I left. Then, of course, the CH repeats. Not that my game was any good, but fine motor control seems to go away with a CH.
Maybe you are having an occular migraine?
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BarbaraD
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Re: Do people suffer different severity of CH?
« Reply #42 on: Dec 7th, 2005, 7:41am » |
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When I wake up with a shadow (2-4 on the Kip scale) I know better than to lay there. I get up and get some coffee down quick. Normally this will abort the full blown attack. O2 helps if the coffee doesn't do it. If it keeps ramping up I hit the cafergot at around a 6-7 Kip, but usually can abort before that. But no way can I go back to sleep.
But I do try to find something to concentrate on while having an attack. Don't know why, but this seems to help to take my mind off the pain. I'll get in front of the computer and play solitaire, concentrate on a TV show, try to work, something to take my mind off the pain. When working, most of the time I have to go back and "redo" anything I do while having a headache, but ..... I've never tried playing golf while in the midst of an attack, but some people do exercise, so it might be ok.
We're all different and have to find what works for us. I've knocked the hell out of a wall several times (with my head and my fist) so I guess knocking a golf ball would be the lesser of the evils. One time I did use a baseball bat on a tree (almost dislocated my shoulder - didn't do that again!).
One thing I've found over the years on this board - Nothing is right or wrong - it's just what works for YOU.
Hugs BD
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bnfreeman
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Re: Do people suffer different severity of CH?
« Reply #43 on: Dec 7th, 2005, 2:34pm » |
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You've got alot of input here. To add to it I absolutley believe that everyones kip scale is different. If you are new to clusters you may not have even had the worse to come and your "kip scale" for yourself can change. In other words, what you think is a 4-5 now may become a 2-3 later. I read that you take painkillers for other headaches. I too have multiple types of headaches and before I knew that it was clusters that I had I would pop multiple pain pills (OTC and prescription). I PROMISE it made things worse. That could be causing even more multiple types of HA. Also, YOU tell your doctor what you feel you need!( injections not pills) and make it known that you are a high priority until things are under control.
Good Luck,
Brandi
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StressFree
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Re: Do people suffer different severity of CH?
« Reply #44 on: Dec 7th, 2005, 3:03pm » |
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I hate to say it, but my cluster headaches began the same way Kevin. Over the years they went from bearable 6 or 7's once each day and chronic, to episodic (thank God) but much more severe and multiple attacks while in cycle (where's God...). I hope yours stay mild or simply never return. It happens  Prayers for you and yours, Rich
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Roxy
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Re: Do people suffer different severity of CH?
« Reply #45 on: Dec 7th, 2005, 11:21pm » |
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on Dec 6th, 2005, 2:14pm, seasonalboomer wrote:| Fully agree that with a Kip 5 and above you're not hitting the links. |
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on Sep 25th, 2005, 10:54am, 12gagueblast wrote:
Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"
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The kip scale always has seemed a little screwed up to me. Not in a bad way, it's just that everyone interprets it all differently. Just like the above quotes.....not able to play golf at a five or above....but according to the kip scale you can go back to sleep.
I just have a few steps in my personal scale.
1. I feel a twinge.
2. Hand is unconsciously holding head.
3. Get real quite....and don't you dare look at me or talk to me.
4. Fuckin hell.
My head is pretty uncomplicated and it just doesn't go through all that many steps. I go from...hey, got a twinge to holy fucking bloody hell....in about five minutes.
Rox
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #46 on: Dec 8th, 2005, 7:24am » |
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People seem obsessed with my golf swing lol! As I mentioned above, if the headache had started whilst on the first tee, there is no way I would have continued, but I was right in the middle of the course, so a good half a mile from the club house. I also had my Imigran pills so hoped it would only last half an hour or so. Its also worth noting that the headaches didn't seem quite as bad at this end of the cycle. Either that or I had learned to deal with them better.
Anyway, that was a couple of months back. I've only had two cycles of headaches. The first I don't remember as they were three years ago, although the notes my Dr has are consistant with this most recent bout. I've got a good inkling that this most recent bout was brought on by the anesthetic I had recently undergone. I mentioned this to my neurologist who said it was possible. The problem is, they don't understand the condition any more than we do. I asked him how the drugs worked he had prescribed, and he said he'd be lying if he said he knew.
Hopefully they never come back, or if they do, they'll be another three years away. Until that day, I'll have my fingers firmly crossed.
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Beastfodder
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Re: Do people suffer different severity of CH?
« Reply #47 on: Dec 8th, 2005, 11:29am » |
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Kevin
Thing is it'll probably be back, next year or in three years time.
Next time you'll need to be prepared if it's going to be much better. Try O2 - the smaller CD cylinder in the UK would even fit in your golf bag, dig your heels in with the doctor to get it. The faster you respond to an attack the higher chance you have of relief.
If you're doing the pills and pharmacy route - pills are the worst option simply because of the time it takes to get them in your bloodstream, bettered by nasal sprays and injections.
You need to ask on what grounds the doctor is witholding the delivery system you need to prevent the pain and why is the effectiveness of the prescribed pain relief governed by variable such as how much food you've got in your system?
One trick if you're stuck with pills is to crush them up and wash them down with a carbonated drink to help speed up the process.
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #48 on: Dec 8th, 2005, 12:08pm » |
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The prescription he has given me, are drugs you take four times a day at the onset of the cycle to hopefully 'turn the headaches off', rather than just control each attack. These were his words, whether they work or not, who knows. As and when I have another cycle, I will insist on the injections. I asked the neuro about it, but as I said, he got funny about me researching it on the net. He even said "Most people don't like the idea of injecting themself". Silly man didn't think to ask ME whether I liked the idea. I didn't see any other people in the room.... 
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TonyG1
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Re: Do people suffer different severity of CH?
« Reply #49 on: Dec 10th, 2005, 7:50pm » |
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on Dec 7th, 2005, 11:21pm, Roxy wrote:
The kip scale always has seemed a little screwed up to me. Not in a bad way, it's just that everyone interprets it all differently. Just like the above quotes.....not able to play golf at a five or above....but according to the kip scale you can go back to sleep.
I just have a few steps in my personal scale.
1. I feel a twinge.
2. Hand is unconsciously holding head.
3. Get real quite....and don't you dare look at me or talk to me.
4. Fuckin hell.
My head is pretty uncomplicated and it just doesn't go through all that many steps. I go from...hey, got a twinge to holy fucking bloody hell....in about five minutes.
Rox
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Roxy - I think it has to do with everyone's pain threshold adjusting to meet the oncoming attacks.... over time and through enough cycles one builds a higher pain threshold as a survival mechanism .... A couple of years back I had to have an emergency appendectomy but dealt with my appendix for about four days before going to the ER ... it was uncomfortable but was by no means unbearable ... in one respect higher pain tolerance is a good thing; however, in another it isn't so good...
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