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Topic: Do people suffer different severity of CH? (Read 2769 times) |
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Kevin_T
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Do people suffer different severity of CH?
« on: Sep 17th, 2005, 1:34pm » |
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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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mischki
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Re: Do people suffer different severity of CH?
« Reply #1 on: Sep 17th, 2005, 2:02pm » |
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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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LeLimey
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Re: Do people suffer different severity of CH?
« Reply #2 on: Sep 17th, 2005, 2:16pm » |
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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_we lcome.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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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #3 on: Sep 17th, 2005, 2:29pm » |
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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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LeLimey
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Re: Do people suffer different severity of CH?
« Reply #4 on: Sep 17th, 2005, 2:56pm » |
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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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LeLimey
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Re: Do people suffer different severity of CH?
« Reply #5 on: Sep 17th, 2005, 2:58pm » |
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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! 
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Jonny
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Re: Do people suffer different severity of CH?
« Reply #6 on: Sep 17th, 2005, 3:30pm » |
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on Sep 17th, 2005, 2:29pm, Kevin_T wrote:| (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 |
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Jonnys diagnosis is done.....Duh!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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FrankF
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Re: Do people suffer different severity of CH?
« Reply #7 on: Sep 17th, 2005, 7:18pm » |
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on Sep 17th, 2005, 2:29pm, Kevin_T wrote:| 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 |
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I'm glad to see you have your priorities in order. 
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Ree
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Re: Do people suffer different severity of CH?
« Reply #8 on: Sep 17th, 2005, 8:34pm » |
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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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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #9 on: Sep 18th, 2005, 1:13am » |
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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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Jonny
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Re: Do people suffer different severity of CH?
« Reply #10 on: Sep 18th, 2005, 1:33am » |
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on Sep 18th, 2005, 1:13am, Kevin_T wrote:| What should I do? Lock myself away, cancel my life and just wait for the next attack? |
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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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| « Last Edit: Sep 18th, 2005, 1:36am by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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burnt-toast
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Re: Do people suffer different severity of CH?
« Reply #11 on: Sep 18th, 2005, 7:45am » |
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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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E-Double
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Re: Do people suffer different severity of CH?
« Reply #12 on: Sep 18th, 2005, 7:58am » |
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on Sep 17th, 2005, 2:02pm, mischki wrote: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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Good description of me.......
Don't tell my wife Michelle 
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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don
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Re: Do people suffer different severity of CH?
« Reply #13 on: Sep 18th, 2005, 8:39am » |
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Symptoms may differ but I have never heard of a "Mild case of CH".
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unsolved1
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Re: Do people suffer different severity of CH?
« Reply #14 on: Sep 18th, 2005, 9:51am » |
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on Sep 18th, 2005, 8:39am, don wrote:| Symptoms may differ but I have never heard of a "Mild case of CH". |
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I agree .. there's nothing 'mild' about CH.
UNsolved
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Jonny
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Re: Do people suffer different severity of CH?
« Reply #15 on: Sep 18th, 2005, 9:58am » |
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A shadow is not a CH attack and never will be, at least in my opinion.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BobG
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Re: Do people suffer different severity of CH?
« Reply #16 on: Sep 18th, 2005, 10:10am » |
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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:I noticed I lost a lot of vision. something I have had a few times before
the headache seemed to start over my OTHER eye
the headache had shifted back
short intermittant bursts of stabbing pains every now and again
These do not sound like cluster symptoms. |
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Quote:What should I do? Lock myself away, cancel my life and just wait for the next attack?
Absolutely not. What if you lost a leg to diabetes?
Would you give up golf? Life goes on, clusters or not. |
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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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don
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Re: Do people suffer different severity of CH?
« Reply #17 on: Sep 18th, 2005, 10:35am » |
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Quote:| But there is no way I could play golf during a full cluster attack. |
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Me niether but I sure could sure swing a 9 iron.
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #18 on: Sep 18th, 2005, 11:47am » |
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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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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #19 on: Sep 18th, 2005, 11:49am » |
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BTW - Please explain the term 'shadow'
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BobG
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Re: Do people suffer different severity of CH?
« Reply #20 on: Sep 18th, 2005, 12:24pm » |
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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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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #21 on: Sep 18th, 2005, 1:55pm » |
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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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BobG
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Re: Do people suffer different severity of CH?
« Reply #22 on: Sep 18th, 2005, 2:10pm » |
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on Sep 18th, 2005, 1:55pm, Kevin_T wrote: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 I think this is probably common to most of us. Trying to release the pressure, blowing the nose, trying to make the ears pop, anything to relieve the pain. We all have our own way to cope. At the painful times it makes sense. Then during the pain free times you ask "Why did I do that?" Then we do it again during the next attack.
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. Try jogging or running around the block. Many folks have reported vigorous exercise can relieve the pain. |
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FrankF
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Re: Do people suffer different severity of CH?
« Reply #23 on: Sep 18th, 2005, 5:44pm » |
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on Sep 18th, 2005, 11:49am, Kevin_T wrote:| BTW - Please explain the term 'shadow' |
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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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| « Last Edit: Sep 18th, 2005, 5:46pm by FrankF » |
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Kevin_T
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Re: Do people suffer different severity of CH?
« Reply #24 on: Sep 19th, 2005, 1:46am » |
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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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