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Title: Do people suffer different severity of CH? Post by Kevin_T on Sep 17th, 2005, 1:34pm I went to see my doctor the other day after suffering bad headaches over the past few weeks. I have just had major bowel surgery so assumed at first that the headaches were maybe a result of antibiotics I was taking but went to see the dr after the headaches continued even when aking no other medication. Based on the symptoms I described and the fact that she could see on her records I had been in back in 2002 with very similar headaches, she thought I may be suffering from CH and prescribed me some Imigran tablets to see if they had any effect (normal painkillers did nothing to help the pain). Since then I have obviously checked up on the web and learned everything I can about CH. Much of the symptoms I suffer fit in with what I have read on sites such as these. * Headache around one eye and temple, never switching * They wake me up at night * When I have them, it seems better for me to get up and walk around rather than lie down * Thinking retrospecively, alcohol DID seem to trigger attacks. I have stopped drinking now! * The Imigran she gave me does stop the pain between 25mins to an hour (depending on how much I have eaten I guess!) whereas before the headaches were lasting often as long as over 2 hours However..... *I don't get a swollen or tearing eye, although if it is a bad headache, it does close up slightly *I don't get them at the same time every day. If anything at the moment, I'm seeming to get them every 7 or so hours. and most importantly...... *Although the pain is bad, and jesus it hurts like hell, it doesn't sound as bad as most of the reports I'm reading on here. Yes, I'm getting out of bed in the night but I'm only sitting on the sofa or at worse pacing around a bit. No way am I throwing myself to the floor, headbutting walls or attacking myself with a phone. My question is, as my headaches don't seem quite as painful as some reports I've read on here, does that rule out CH? Or are there varying degrees of CH? |
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Title: Re: Do people suffer different severity of CH? Post by mischki on Sep 17th, 2005, 2:02pm Hi Kevin! My name is Michelle, and my husband Richard has been suffering from these for about four years. I've only been on this site for a very short time, but everyone here has been so helpful! I hope you find the same help and support here that we have! I'm sure that others can reply better than I, but I thought I'd go ahead and respond since no one had yet. My husband's CHs can vary from: 1 - rubbing his head, doesn't sit still, no tearing, I can't tell he's suffering unless he says something, gone in 15-20 minutes (if it doesn't ramp up) 2 - pacing, eye looks swollen, I can tell but no one else could, gone in 15-30 minutes with excercise (he uses a Gazelle excercise machine) and/or hot water soak 3 - rocking, pacing, moaning, side of face swollen, eye tearing, anyone could see this, need to get the 'trex out, if let to run its course gone in an hour or maybe 2 4 - banging his head, crying, moaning, if someone saw this they'd call 911, and why the **** did you let it go this far (I call this "the Other Richard) 5 - I don't want to talk about this! His also seem to "ramp up." He can go for weeks with just getting them at the first or second severity. In fact, the first few cycles he had, they never got much higher. If I could chart his full blown cycles, they'd look like a bell curve as far as the intensity goes. They seem to take longer to get to the height of his cycle than they do to drop off. I'm a newbie here too, but from what I can tell of others' descriptions, I think what I'm describing as level one would be a "shadow," two would be a "snap," 3 and up would be "hits." (All of you out there please correct me if I'm wrong). He calls them "twinges," "I think I'm getting one," "Here it comes," and "HELP ME." (We don't talk about number 5 in polite company). If left to his own devices, he'll not get the Imitrex out until he's at 4, but if I'm there, I'll try to catch it before it even gets to a 3. We just got oxygen yesterday, and he's only used it once, so I can't relate any experience there yet. So, I guess, in my long-winded way, I'm trying to say "yes." So, don't feel like you don't belong here just because your pain isn't at the level that other's is. I pray for you that it doesn't ever get there! mischki |
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Title: Re: Do people suffer different severity of CH? Post by LeLimey on Sep 17th, 2005, 2:16pm Hi Kevin, First of all congratulations for having a bloody good GP there, you're lucky! Although having said that Imigran tablets won't touch the sides of a CH, your doctor isn't far wrong, Imigran IS the only licensed treatment for CH in the UK BUT.. its the injections and not the tablets, they take too long to work. The injections work in 5-10 minutes. Some people can use the nasal sprays although for me personally they also took far too long to kick in but we're all different so you might like to give those a go. You need to see a neurologist. You need to have an MRI to rule out anything else for a start but also to get a definitive diagnosis. There are many other conditions which are similar in how they present and it does take a headache professional to diagnose for certain. I don't know if you have discovered OUCH UK at all but they will be a big help to you http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD Have you read about O2? I swear by it. It works brilliantly for me and its alot kinder than Imigran! You can read up about it here but also look up CD Oxygen under the Treatments button on OUCH UK. It will tell you exactly what your doctor needs to put on a pescription in order for you to get a small tank with an integral regulator so you can try it easily. You will also need a non rebreather mask. You can get these from Boots for about £7 each or you can order 2 for £6 if you join OUCH UK!! There is a better mask available also from www.clustermasx.com which I use and swear by. There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back) Oh and there is a GP Info page too if its of help! I suspect your doctor is one who would find this interesting. http://gpinfo.ouchuk.org/ Let us know how you are getting on okay? Best wishes Helen |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 17th, 2005, 2:29pm Well its very early days for me. I was prescribed 6 Imigran pills which lasted two days. I managed to get a repeat prescription yesterday (was playing golf so couldn't get to the surgery to actually see a dr - also got a headache whilst playing which lasted a good 5 holes >:( ) but again only for 6 pills. I will hopefully get another appointment on Monday to discuss how things have gone and discuss the next steps. Only thing is the dr who prescribed the imigran has gone away on holiday now, so I hope whoever I see is as knowledgable as her! I'm guessing without referring me to a neirologist and waiting for an MRI (which will take months in the UIK, I'm sure!), they won't prescribe me with Imigran injections will they? This is all such a bummer, as I've only just finished going in and out of hospital for a completely unrelated condition, and was really looking forward to enjoying my life again without any health complications. Hopefully the headaches will disappear soon and won't come back for another 3 years! |
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Title: Re: Do people suffer different severity of CH? Post by LeLimey on Sep 17th, 2005, 2:56pm Oh Kevin, I know how that feels!! CH for me came on top of several months illness with another condition and it was just the final straw! I got a neuro's appt through pretty quickly and if you can get a phone number for the hospital and neuro your doctor is going to refer you to you can always ring and ask for a cancellation which will speed the whole process up. On the subject of triptans again I need to give you a word of warning. You shouldn't be using more than 2 tablets, nasal sprays or injections a day. That's because they are vaso constrictors. While we are getting hit the blood vessels in our head swell to ten times their normal size. Even in migraine (which is what Imi was invented for!) blood vessels swell to twice their normal size. These drugs work by taking the blood vessels back down to their normal size and thus taking the pressure off everything else their squeezing the bits out of (don't you love my technical jargon?! ::) ) The thing is.. they DON'T just constrict the blood vessels in your brain, they constrict them throughout your entire body (yes even THAT bit! ;) ) so you can see the danger of overdosing, you don't want to end up with heart problems on top of everything else so be careful okay? I know that's easier said than done but over the weekend try using ice as well, I find cold helps me alot, even down to going outside into the cold night air. If you get desperate go to A & E, they will help you too. Oh and there is always someone here, come and find us if you need us okay? Helen |
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Title: Re: Do people suffer different severity of CH? Post by LeLimey on Sep 17th, 2005, 2:58pm Hang on.. I take it all back!! PALACE fan??! .. suffer you bugger!!! LOL I'm only joking :) I'm an ex Londoner myself, was born there and lived there until I was 23. And as far as London teams go HAMMERS RULE! :P |
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Title: Re: Do people suffer different severity of CH? Post by Jonny on Sep 17th, 2005, 3:30pm on 09/17/05 at 14:29:07, Kevin_T wrote:
Jonnys diagnosis is done.....Duh!! |
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Title: Re: Do people suffer different severity of CH? Post by FrankF on Sep 17th, 2005, 7:18pm on 09/17/05 at 14:29:07, Kevin_T wrote:
I'm glad to see you have your priorities in order. :( |
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Title: Re: Do people suffer different severity of CH? Post by Ree on Sep 17th, 2005, 8:34pm some guys like to golf....... and somes pain threshold is different.....I think you Cluster heads sure can take alot more pain than most....Dave was out moving a boat the day after shoulder surgery.....He moved his mother on one crutch after knee surgery... so... and some of you guys have weird priorities like smoking seems to come first above family, loved ones etc... so don't go judging someone because they could golf through a 4-5 kip... ree |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 18th, 2005, 1:13am Its a good point though and relevant to my initial question. The fact that I was able to play golf through my headache - does that suggest this isn't CH? Going up the 9th hole, I noticed I lost a lot of vision - almost like I had been staring at the sun. This is something I have had a few times before in my life and scared the crap out of me the first time. On the 10th green I noticed a headache starting to kick in so took my Imigran tablet. The funny thing was the headache seemed to start over my OTHER eye and this is the first time this had happened (first time with the visual impairment too). Once the headache started, my visuals were back to normal by the way. Within 10 minutes though, the headache had shifted back over the eye it normally does and taken on the more normal characteristics I have got used to. Huge pressure under my eye and temple with short intermittant bursts of stabbing pains every now and again. I was able to play golf however until the pain subsided about an hour later. I was very quiet and certainly playing out on my own, not talking to my playing partners who knew what was going on. It was hard to concentrate but for me having something else to deal with instead of just letting the pain dominate my thoughts help. I didn't actually play that bad considering. Believe me, if you tell me, it can't possibly be CH based on the fact I was able to play golf, I won't be disappointed, and as for whoever questioned my priorities? What should I do? Lock myself away, cancel my life and just wait for the next attack? |
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Title: Re: Do people suffer different severity of CH? Post by Jonny on Sep 18th, 2005, 1:33am on 09/18/05 at 01:13:42, Kevin_T wrote:
Dude, If you have CH you aint playing no golf during an attack. get a better doc! Edit to add: Ree, you are out of line....until you have had a CH you cant speak of the pain :-* |
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Title: Re: Do people suffer different severity of CH? Post by burnt-toast on Sep 18th, 2005, 7:45am Yes the severity level of each cycle/attack varies. Regardless, it is difficult to do much more than deal with the pain. I concentrate on Spider Solitare but just barely and sometimes not at all at the peak of attacks. I believe that concentration and maybe the light helps me cope? I don't think I could play golf but you may be super human when it comes to dealing with pain. Everyone seems somewhat different in how they deal with attacks but the pain seems to make most activities (outisde of self-abuse) nearly impossible. Tom |
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Title: Re: Do people suffer different severity of CH? Post by E-Double on Sep 18th, 2005, 7:58am on 09/17/05 at 14:02:09, mischki wrote:
Good description of me....... Don't tell my wife Michelle [smiley=laugh.gif] I will have CH where I can still function......It hurts like hell but I can throw an icepack around my head and jam a thumb into my "lump" and do what I need to do. If it gets any worse I can't do shit. I missed the "good" part of my brother in law's bachelor party weekend due to getting whacked!!! Had to lock myself in my hotel room. Shadowed pretty hard but no REAL pain the next morning and played a full 18 ;).... Then again ICE cold brew and golf carts made for a good day. (Alcohol doesn't trigger attacks for me) Happy putting. |
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Title: Re: Do people suffer different severity of CH? Post by don on Sep 18th, 2005, 8:39am Symptoms may differ but I have never heard of a "Mild case of CH". |
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Title: Re: Do people suffer different severity of CH? Post by unsolved1 on Sep 18th, 2005, 9:51am on 09/18/05 at 08:39:05, don wrote:
I agree .. there's nothing 'mild' about CH. UNsolved |
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Title: Re: Do people suffer different severity of CH? Post by Jonny on Sep 18th, 2005, 9:58am A shadow is not a CH attack and never will be, at least in my opinion. |
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Title: Re: Do people suffer different severity of CH? Post by BobG on Sep 18th, 2005, 10:10am This is only my opinion, nothing more. Many of the symptoms you describe sound a lot like clusters, but, some don’t. You continued with your golf game. Keeping busy during a shadow is what I try to do. But there is no way I could play golf during a full cluster attack. I’m lucky if I can pace back and forth during an attack. Quote:
Quote:
And, to answer your original question “Do people suffer different severity of CH?” Yes. The level of my attacks now are much less severe and frequent than 10 or 20 years ago. A KIP 3 to some sufferers may be time for an Imitrex injection and for others it is just an irritant during a golf game. |
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Title: Re: Do people suffer different severity of CH? Post by don on Sep 18th, 2005, 10:35am Quote:
Me niether but I sure could sure swing a 9 iron. |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 18th, 2005, 11:47am FRom around four headaches a day, I've now gone nearly 24 hours without one. Well, I've had a little bit of a general headache which I've taken normal painkillers for, but not these big headaches which may or may not be CH. I played golf today for the first time since starting again after my operation uninterupted by these headaches. I thought one was coming on just whilst I was about to eat in a restaurant about an hour ago so took a Imigran then nothing happened., so I feel like I've wasted one now. When the headache came on at golf on Friday, I very seriously considered giving up, but I realised I still had to walk probably a quarter of a mile to get back to my car with a bag of clubs on my back, and then I was only going to sit in it, in the same amount of pain. So in the end I just kept going. At the end of the day, I don't know if what I'm feeling with these headaches is what you guys are feeling, which is why I started this thread. Apart from that one particular headache, which started after some visual disturbance and switched sides, all of the other headaches have matched up exactly with the sympotms of CH. If you're telling me that you guys don't think its CH, then great, I'm delighted. |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 18th, 2005, 11:49am BTW - Please explain the term 'shadow' |
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Title: Re: Do people suffer different severity of CH? Post by BobG on Sep 18th, 2005, 12:24pm A shadow, to me, is a very low grade cluster headache, on the KIP scale, a 2 or low 3. It's not enough to stop activities but it is high enough to let you know the devil is alive and well in your trigeminal and a full blown attack may (or may not) happen very soon. They can last for a few minutes or go on for hours. More of an irritant than anything. |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 18th, 2005, 1:55pm Last night I awoke with a slight headache. It was in the normal place, but I didn't feel the need to get up or take a pill. I guess this is what you call shadows. Looking at the Kip scale I doubt any of mine have been over 5 or 6. The ones I have had recently, I've been able to sit at work or continue watching TV or playing golf, whereas a couple of weeks ago they were definately worse where I was in bed alone, trying to throw up and make myself sneeze in some kind of stupid attempt to release pressure and even got up, threw on a tracksuit and walked round the block in the rain just to try and take my mind of it. |
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Title: Re: Do people suffer different severity of CH? Post by BobG on Sep 18th, 2005, 2:10pm on 09/18/05 at 13:55:36, Kevin_T wrote:
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Title: Re: Do people suffer different severity of CH? Post by FrankF on Sep 18th, 2005, 5:44pm on 09/18/05 at 11:49:06, Kevin_T wrote:
For me it is a dull low-grade pain in my eye or nose, or stuffed up nose... that lasts for several hours. It isn't really painful at all... I just feel it and know what it is. And it is there to remind me all day long the Beast will be coming to visit later tonight. |
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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 19th, 2005, 1:46am I was awoken again tonight at 4.00am. Headache with the classic symptoms, although once again, nothing too severe and I was able to get back to sleep in half an hour or so without even sitting up in bed. Similar low-grade headache this morning which is just trailing off now. These are nowhere near as strong as the ones I was getting a week or two back. Could this mean, that IF I am suffering from CH, that my episode is now trailing off? |
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Title: Re: Do people suffer different severity of CH? Post by E-Double on Sep 19th, 2005, 7:39am 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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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 19th, 2005, 11:37am 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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Title: Re: Do people suffer different severity of CH? Post by ghost62 on Sep 19th, 2005, 2:00pm 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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Title: Re: Do people suffer different severity of CH? Post by kelliev on Sep 19th, 2005, 8:02pm 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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Title: Re: Do people suffer different severity of CH? Post by 12gagueblast on Sep 23rd, 2005, 8:56pm 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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Title: Re: Do people suffer different severity of CH? Post by don on Sep 25th, 2005, 7:20am Quote:
If it were truely a 4-5 CH you would not continue palying golf. |
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Title: Re: Do people suffer different severity of CH? Post by 12gagueblast on Sep 25th, 2005, 10:54am 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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Title: Re: Do people suffer different severity of CH? Post by Paul_H on Sep 26th, 2005, 3:21am 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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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Sep 26th, 2005, 5:23am 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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Title: Re: Do people suffer different severity of CH? Post by Paul_H on Sep 26th, 2005, 10:05am 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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Title: Re: Do people suffer different severity of CH? Post by BlueMeanie on Sep 26th, 2005, 6:57pm 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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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Dec 6th, 2005, 8:45am Not been around for a while. I've had no headaches - that's why!! :D 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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Title: Re: Do people suffer different severity of CH? Post by Beastfodder on Dec 6th, 2005, 11:09am 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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Title: Re: Do people suffer different severity of CH? Post by zwibbs/Scott on Dec 6th, 2005, 1:48pm 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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Title: Re: Do people suffer different severity of CH? Post by seasonalboomer on Dec 6th, 2005, 2:14pm 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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Title: Re: Do people suffer different severity of CH? Post by mynm156 on Dec 6th, 2005, 11:43pm Mine vary since going Chronic I get more lower kips just more frequent |
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Title: Re: Do people suffer different severity of CH? Post by Spike_Inmyeye on Dec 7th, 2005, 4:18am 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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Title: Re: Do people suffer different severity of CH? Post by BarbaraD on Dec 7th, 2005, 7:41am 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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Title: Re: Do people suffer different severity of CH? Post by bnfreeman on Dec 7th, 2005, 2:34pm 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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Title: Re: Do people suffer different severity of CH? Post by StressFree on Dec 7th, 2005, 3:03pm 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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Title: Re: Do people suffer different severity of CH? Post by Roxy on Dec 7th, 2005, 11:21pm on 12/06/05 at 14:14:49, seasonalboomer wrote:
on 09/25/05 at 10:54:18, 12gagueblast 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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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Dec 8th, 2005, 7:24am 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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Title: Re: Do people suffer different severity of CH? Post by Beastfodder on Dec 8th, 2005, 11:29am 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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Title: Re: Do people suffer different severity of CH? Post by Kevin_T on Dec 8th, 2005, 12:08pm 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.... [smiley=huh.gif] |
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Title: Re: Do people suffer different severity of CH? Post by TonyG1 on Dec 10th, 2005, 7:50pm on 12/07/05 at 23:21:33, Roxy wrote:
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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Title: Re: Do people suffer different severity of CH? You Post by imnotbub on Dec 12th, 2005, 11:10am 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. Amen to this. When I first came to this discussion group I thought that the CH's I was having had to be a "10". As one reads about other's experiences, the CH's you thought were the worst pain ever experienced by man or beast were probably no more than a "6 or 7", at least in my case. Since I have only had three or four cycles in my life, I didn't know what the "F" was going on the first couple, so I didn't put it together that it was something other than a sinus infection, (A real a$$ kicker, but that's what I thought) which is why I'm not sure how many I've had exactly. Now I have more insight into this. This could be a curse, because it means that I now know that I may get more severe attacks in the future. I think you will find with time and experience that you really could not play golf at all if you were any higher than a "2", at least not any golf that would be worth playing. Be prepared for the next one. I know now that my 'studliness' as far as not needing anything but a red bull and an hour or so of pacing around, was thanks to the beast not really grabbing me by the balls yet. I will be seeking O2 for the house now, not waiting for the next cycle. Does any one know if O2 bottles 'expire' like a fire extinguisher, or will it last while waiting to be used? |
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Title: Re: Do people suffer different severity of CH? Post by Melissa on Dec 12th, 2005, 11:18am Oh boy. My ch's vary in degree with each cycle. This particular cycle has been no exception. Last cycle the pain was relentless, ruthless and brought me to my knees over and over again. This time around, I am on a new medication for an unrelated condition, and am also on kudzu. The attacks have been never above a kip5 and don't last longer than an hour. Something new this time around tho, is day long shadowing. The only way I can describe it, is if someone slammed your head in a door repeatedly and the pain that reverberates afterwards, lasts all day long. :-/ Anyway, don't mean to repeat, but one persons kip 3 is anothers kip 7. YMMV I hope your pain is completely gone now. mel |
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