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LeLimey
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Can CH be managed?
« on: Aug 4th, 2006, 10:24am » |
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Flash has agreed this would make a great stand alone post rather than tacking it on to another thread. I am finding it intriguing and I thought you all might too. In Flash's words from here on in:
Science is continually demonstarting to us that X medication works because it has Y impact on the frequency/severity/duration of the attacks. But I am skeptical of this, because they do not tend to track the results longer term. The bulk of the people reading and posting to this forum are on medication. So I thought it would be interesting to let them see what happens without any meds at all.
Sure if you just ignore the beast then things will turn nasty, but once you find out what the beast wants, and start feeding it, then things are much more managable.
I've discovered that sometimes my body is telling me "just leave me alone to lie in bed", and it really doesn't want to get up. Eating my breakfast, having my morning shower, and getting dressed can be very difficult, but then SUDDENLY the shadows lift, and I can go the whole day with little or no activity. Pretty certain that had I lain in bed it would be one attack after the other. Sleeping felt natural but it WASN'T what the beast wanted.
Would be interesting to see if other people experience similar, but only useful without any medications clouding the issue.
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LeLimey
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Re: Can CH be managed?
« Reply #1 on: Aug 4th, 2006, 10:25am » |
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Here is Flash's diary to date which can be read in full here
Quote:My phantom episode continues. Only get an attack the morning after I drink alcohol. Had one this week hit... all of Kip 3 for 10 mins, but eating some breakfast ceral, and drinking a cup of green tea put it away.
Some interesting observations:
The only attacks I've been getting are after drinking alcohol.
Alcohol does not trigger an attack at the time of consumption, but instead the morning after. Although it's typically been between 8pm and 10pm that I've drank any booze.
Red wine seems to trigger a worse attack than other types of alcohol.
I reckon this phantom has now been going around 1 month, and it should be on it's way out shortly |
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Quote:The phantom episode rocks on, which a new twist. I'm have now experienced 5 attacks at Kip3. Left unattended these appear to run for approx 1 hour... but have only let one attack go all the way. Am still going up to 24 hours between attacks and at worst getting 2 hits in the same 24 hours. Last night I got hit twice within 3 hours.
So it's hardly an emergency situation yet, this may simply be the peak of the phantom episode, and the timing is about right for that, given that the meat of my epsiode would usually last 1 month.
It still feels like the headaches are being restricted. Perhaps the worst one was bordering on a kip 4.
Have been doing some experimentation, through bear in mind that this might only apply to phantom episodes...
1) Have noticed that hits do not occur within 24 hours of taking 10mg of the antihistamine benadryl (cetirizine hydrochloride) for hayfever. Sure that there was previously reported by the medical world to be some tentative link between CH and histamine. Well perhaps the effect is more noticable with phantom episodes, and/or weaker attacks. Just took a tablet at 7am this morning so lets see how today goes...
2) The green (gunpowder) tea has so far worked spectacularily well! It has to be taken within the first 5 minutes, but when it is, the attack is halted in it's tracks after precisely 15 mins. From experience I'd say this works as well as O2 on low level attacks, but without the rebound. But again it's early days.
3) REMEMBER this is based on only 5 attacks, all in the space of a week, although the phantom has been going a month.
4) I calculate pain scores by multiplying the avg kip level of each attack by it's duration, then summing these for all attacks that day. To date my worst day has totalled Pain score 4. My previous record was 196... |
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LeLimey
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Re: Can CH be managed?
« Reply #2 on: Aug 4th, 2006, 10:27am » |
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Quote:So far today no hits since the 7am one. Been drinking gunpowder tea in advance of anticipated hits and it's working. My total pain score today so far <2. There is definately something hindering this episode.
Also worth mentioning that so far all my hits (feeble though they may be) have been what I'd describe as clean/classic CH hits, as opposed to dirty hits. Please allow me to explain because I do not recall seeing much discussion on this:
Clean/classic hit. These are usually no more than kip 7. They typically last no more than an hour (unless prolonged by stress), they come on fast, reaching their max kip withing 5-10 mins, then maintain that same kip contantly before fading out over a 10-15 minutes interval. Afterwards they leave you with what I'd describe as the endorphin haze (not sure this is actually endorphins but feels the same). This last part is actually quite pleasant and feels sleepy. These types of attacks are managable. There is little in the way of shadowing.
Dirty hit. They can be any kip, but typically drag on for anything up to 3 hours. They come on a little more slowly, and the kip can vary over the course of an attack. They take ages to fade out, and never completely go away leaving some shadow activity running in the background. There is no endorphin feeling afterwards. It's like kip levels 8, 9, and 10 belongs exclusively to these bastards. These I REALLY don't like. These types of attacks are unmanagable.
I notice that I only get dirty hits if I attempt to medicate the CH, especially with OTC analgesic drugs. O2 rebounds also tend to be dirty bastards. Notice that if I get one too many dirty hits then the whole episode goes dirty on me and this is hell.
In the event that this does turn into a proper episode then hopefully it will stay clean. Other than benadryl I haven't taken any medication, for anything, for a very long time. |
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LeLimey
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Re: Can CH be managed?
« Reply #3 on: Aug 4th, 2006, 10:28am » |
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Quote:The main reason I am waiting is to be sure I make a confirmed kill, so that we can legitimately claim it as a scalp.
The other reason is that it gives me a chance to play around with the CH a bit in the meantime, and possibly learn some more.
Yesterday so no further activity. Last night I got hit twice, at roughly the same times as before, both at Kip2, and both aborted after approx 20 mins with green tea. Todays pain score so far = uh <1! Unfortunately as these attacks occured right on the benadryl borderline, it has not been possible to rule out benadryl as excerting a positive influence.
This leads me to some potentially useful information, and it would be nice if some other people would help me test another little theory. In order to help you have to be med free.
I have long harboured a theory that it is possible to manage CH to some extent without any medication. This is really useful for people attempting the shrooms or seeds because it may provide some intermediate relief.
My attacks can usually be aborted within the first 5 minutes if I undertake one or more of the following activies:
Go to sleep.
Wake up.
Eat.
Drink.
Exert myself.
Shit / piss.
I have noticed that attacks are likely to occur if I stay up too late, sleep in too long, go hungry, go thirsty, am bursting for the toilet, or not getting any exercise.
By sleeping regular hours, eating regular meals, walking my 10,000 steps per day, and visiting the bathroom when needed it has been possible to reduce the frequency of attacks.
So I got to wondering whether all attacks signified a need, whether that need was in fact justified. So whenever an attack occurs I check my current state, then take all possible courses of action within the first 5 minutes... and it always aborts.
For instance, if I am sleeping, then the attack will usually come during the REM phase, so as soon as I become aware of the hit I wake myself up, get out of bed, put on the lights, start the kettle boiling, visit the bathroom, and in the process have to rush round to do all this ASAP. Then I make a cup of green tea, eat a light snack, and then just keep myself altert and concious until the attack ends, usually withint 10-20 mins. Then I go back to sleep.
If I am awake, then I check to see how long since my last meal, and whether I am thirsty. Then visit the bathroom if necessary, eat, drink, and shut my eyes. agin the attack fades out in 10-20 mins.
I have found that if I fail to take these courses of action then subsequent attacks become more painful, as if the beast is ringing the bell louder.
So to summarise:
Get regular sleep, not too much, not too little.
Take daily exercise, walking 10,000 steps is good. Can be done is 2 stages.
Eat regular meals. In fact I'd recommend 6 small meals. Even a slice of toast can count as a meal.
Drink plenty of water, but not too much.
When an attack comes, check current status and take all possible evasive action.
Always act within the first 5 minutes is at all possible. Sometime you get a little longer.
Waking up in the middle of the night with an attack, turning on lights, eating, drinking etc goes against the grain, but trust me it really does work incredibly well. I am sure that eating and drinking must have some sort of effect on serotonin levels.
A good time to test this out is at the start of an episode. This way it might be possible to prolong the manageable state with low daily pain scores until such time as it becomes necessary to take the shrooms or seeds. |
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LeLimey
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Re: Can CH be managed?
« Reply #4 on: Aug 4th, 2006, 10:30am » |
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Quote:Friday was the worst day so far. A pain score of 6. Oooh how do I cope LOL?
Since then nothing but a couple of threats, one was even aborted by going outside for fresh air. Last headache was on Friday night at 0130-0230. Pain score for Saturday was 0.25. |
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Quote:Nothing from 0230 Friday until 0500 Monday. Then hit with a Kip4-5 which I attempted to sleep through, just to see what would happen. Headache was still persisting after 30 mins full force, and possibly hardening. Got up, had a pee, and drank a cup of green tea. Headache terminated cleanly within 10-15mins. While sleeping was aware of a low level attack of short duration, not sure what time this was. Then hit a Kip5 at 1330 today whilst interviewing people. Reckon this was down to needing my lunch, but had to complete interview. Managed to temp escape and brew some more green tea at 1400, headache then restreated to Kip1 within 10-15 mins enabling me to conclude the interview, although I did end up soaking with sweat. Walked 1 mile round trip to supermarket and bought lunch, the Kip1 still persisting, then consumed lunch and the Kip1 terminated within 10-15 minutes.
So pain score for today so far is 11. Not a good day relatively speaking, but remember that my record is 196... Really starting to rely on the green tea. So far it has not failed |
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Quote:All this leads me to question whether the green tea is effective. I see several possibilities:
1) Coincidence. It could be that I keep happening to drink the tea 15 mins before each attack is due to terminate. However i have varied the timing of my intake from within 120 secs to after 30 mins and each time it's worked. Pretty big coincidence.
2) Drinking anything would help. Quite possibly, and I need to test this out. The waterx3 theory would back this up. |
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LeLimey
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Re: Can CH be managed?
« Reply #5 on: Aug 4th, 2006, 10:31am » |
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Quote:Green tea, especially the ones based on gunpowder tea contain virtualy no caffiene or tannin, just loads of nutrients.
So far have no taken the seeds. Am waiting to see if things get bad. We learn more about this condition whilst unmedicated. And after all I went many years without ANY medication, so can do this standing on my head. In all honesty I do believe that most OTC and prescription meds make it worse. Analgesics like aspirin, paracetomal, and iboprufen make it MUCH worse. Not sure what their brand names are in the US though.
You ever notice that the people worst affected are the ones on most meds? Personally I put that particular egg BEFORE the chicken!
Will post here if I need to take the seeds.
If anyone else fancies testing out the tea, then I'd advocate doing so whilst med free otherwise any results are close to worthless. Todays final pain score was 12 1/2. Ouch, totalled up that's almost like one decent hit then LOL. |
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Quote:| Todays pain score so far =4 1/2. Green tea still working. Showing Horner's sign big time now, especially whilst shadowing |
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Quote:The 2nd of August passed with barely a whimper. A kipless night LOL, and 2 hits during the day aborted quickly with green tea. Lets call it a total pain score of 1 for the day. So began thinking I was home free.
So onto the 3rd... hits at 3am, 5am, and 7am this morning. Was getting hard to drag myself out of bed for some tea. All occurred during REM phase, because they intruded on the dreams. The 7am hit was the worst because I let it drag on for maybe 20mins before getting the tea made. I'd rate this as a good solid Kip 4, and it ended up lasting 35 mins. Again I'm fairly sure that the tea played a big part in aborting all 3 attacks.
So pain score so far today is 5.
If I can attribute the increase in activity to anything, then it's that we had steak last night which was marinated in balsamic vinegar. This is possibly too close to alcohol, and red wine in particular for comfort. But then again no way of knowing for sure. Today I'll eat very bland food and see if I get less hits. |
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LeLimey
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Re: Can CH be managed?
« Reply #6 on: Aug 4th, 2006, 10:32am » |
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Quote:Yesterday saw the beast make a couple of attempts but I easily succeded in fending it off until 11pm. Was watching a movie and the beast seemingly decided it was past my bedtime. The hit came on slowly, and I ingested the tea early but it didn't make any difference. In the end the solution was to lie down in dark room, by this stage the attack had been going 45 mins and was into kip 6, meaning that I was finding it hard to tolerate light (CH has always made me photophobic from level 6 through to 10). 15 minutes of thrashing around on the hallway floor in the dark saw the hit subside, and made my way to be thereafter. Fuck you beast I can take much more than that so bring it on.
Final pain score for yesterday stands at 11.
Then slept through without incident until 0730 when the beast decided I had to get up, piss, eat, and drink. So I did and the attack was aborted in 15 minutes. Then stupidly I went back to bed. Had another 2 hours sleep (which truth be told was unnecessary), and then woke up at 0930 with the harbringer of a high kip attack. You know when the shadow clamps itself tight over the whole of the CH side of the head, from neck and jaw through all the teeth past the temple and right up to the top? Where everything feels tender, and even blowing the blocked nostril is unpleasant. Where your head feels like a ticking bomb? Well that...
So I got up again, had the tea, ate breakfast, still no joy. Then had a shower, this helped a lot. Then got shaved, dressed and drove to work. By this time it was alsmost baseline, then at 1150 it started to fire up again, so I walked to the shops and bought lunch, this is about 2/3rds of a mile round trip, and that cleared it. Then I ate lunch, and it pegged back again. It's now 1400 and no hit has materialised, but the head is still feeling a little touchy.
So far we'll call today 4.
So far only last nights hit has failed to be impacted by the green tea, and it certainly seemed to be a GO STRAIGHT TO BED AND SLEEP type hit. BUT I'm still not convinced that it's the tea in particular as opposed to just drinking something hot and steamy. To test this I added some cold water to a couple of cups, and they didn't seem to work as well.
Still haven't taken any meds. I'm hanging on until they get really good/bad then going to have Laura video me for posterity. Also going to try and ride out this episode without any meds, just to see how well it can be managed. Then in September I'l pick some shrooms and go back to maintenance doses and give myself a few years off CH.
If anyone would like to join me in this experiement on whether CH can be managed without meds. Then the only stipulation is that you are med free for 1 month going in. If you check my pain scores to date then you'll see that there's nothing much to fear. Contact me if you're interested. This is ideal for someone that's a little too nervous of shrooms, but is dissallusioned with conventional medication. |
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Katherinecm
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Re: Can CH be managed?
« Reply #7 on: Aug 4th, 2006, 10:37am » |
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I think this is definitely a legitimate idea and something that should be considered and used if it works and if you're having low-level hits. But for those of us with families in political or government jobs who can't fool around with illegal substances and for who RC seeds work intermittently at best, I have to say I would be suicidal having constant KIP-10's without managed pain. That's not to say I'm drugged out all the time. Even taking a lortab once or twice a week is enough of a relief for me psychologically. I'm looking for some kind of preventative that works- any kind- herbal, vitamins, diet, I'll try it all, barring something that will end the career of someone I love.
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LeLimey
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Re: Can CH be managed?
« Reply #8 on: Aug 4th, 2006, 10:40am » |
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I have a question too.. does O2 count as a "med" in this scenario? ie could you use it to abort whilst still trying to follow the rest of the guidelines?
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vig
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Re: Can CH be managed?
« Reply #9 on: Aug 4th, 2006, 10:47am » |
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cool!
thanks Flash and Helen....
I went 2 years without medicine for CH....
that was when I advanced from Episodic to CHronic.
every episode (I Have 4 a year, 6 weeks to 2 months) progressively got worse, more intense HA's and LONGER, until it all blurred into one big CH mess.
So be careful.
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pattik
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Re: Can CH be managed?
« Reply #10 on: Aug 4th, 2006, 10:49am » |
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Good thread idea, Helen. As a 26+ year episodic CH'er, the only time I have ever tried preventative meds was a two week stint with lithium about 10 years ago. I have refrained from using preventative meds since then and relied only on abortives strictly as a personal choice. So "listening" to the beastie has come naturally to me for a long time. O2, ice, and caffeine are my friends--as well as a well-timed small meal or some extra exercise.
I know what you mean about doing something which may go a little against your usual routine, but ends up shortening a hit. These experiences are all good tools for the arsenal.
I can't compare my episodes with anyone else's. No two people experience things the same way. But based on all the reading I have done here over the years of other's experiences, I think I'm doing pretty well at manageing my CH.
Patti
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| « Last Edit: Aug 5th, 2006, 10:19am by pattik » |
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George_J
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Re: Can CH be managed?
« Reply #11 on: Aug 4th, 2006, 12:23pm » |
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I'm a forty-year episodic, and have been unmedicated (other than melatonin and magnesium supplements) for many years.
While my cycles continue, they've decreased in frequency, from twice a year to once every three years. Is it because I chose not to use medication? I can't say. I will say, however, that this apparent natural process is at least manageable. I'd be extremely reluctant to medicate with something that fiddles with the mechanism of these headaches, whatever that might be.
Thanks for the log, Helen and Flash--it's fascinating, and it's information like this that may enable us to get a handle on this thing, eventually.
Best regards,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Re: Can CH be managed?
« Reply #12 on: Aug 4th, 2006, 3:31pm » |
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on Aug 4th, 2006, 12:23pm, georgej wrote:| I'd be extremely reluctant to medicate with something that fiddles with the mechanism of these headaches, whatever that might be. |
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This is exactly how I feel. I am convinced the more you mess with it, the worse it gets.
I am one who chooses to go med free. Exception here is 02. When I went off everything last Dec and got the 02, it was by far, the best thing I had ever done.
I found mixing combinations of whatever...was not the thing to do. The last triptan for me was in Jan., 2004.
I have no cycle..even though I'm episodic. I may go 3 or 4 weeks with no sign of CH. Then there's times I get hit 2 or 3 times in a week. This is manageable to me, and I'm comfortable with the 02 as an abortive.
Thanks for the post Helen...very interesting.
Jean
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CHTom
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What is the connection between defecating and urinating and CH pain? While most of us urinate several times a day, we usually only defecate once a day unless we are taking laxatives. For myself, either of these two acts has no effect upon my CH pain. Please explain your reasoning between defecating and urinating and CH pain and are laxatives used to increase the frequency of defecation. Thanks.
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LeLimey
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Re: Can CH be managed?
« Reply #14 on: Aug 4th, 2006, 4:24pm » |
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For the benefit of new people CHTom is our resident troll. He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.
The best response to him is no response. All we do is inform people as best we can that his posts are unsound.
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CHTom
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I think that my questions are quite simple and straight forward, Helen. If you want to always label me as a "troll", that is fine, If you can't answer the question, then admit it. Does anyone have an answer? thanks.
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Re: Can CH be managed?
« Reply #16 on: Aug 4th, 2006, 8:20pm » |
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Maybe thats how to tell weather your coming or going? 
jb
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Re: Can CH be managed?
« Reply #17 on: Aug 4th, 2006, 8:40pm » |
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[quote author=LeLimey link=board=meds;num=1154701446;start=0#0 date=08/04/06 at 10:24:05
Sure if you just ignore the beast then things will turn nasty, but once you find out what the beast wants, and start feeding it, then things are much more managable.
I do agree a lot with what is said. I do know if I try to sleep in at times that I get hit a lot. But why should anyone have to put up with this type of pain. Are we managing the headaches or are they managing us. If we cannot sleep in when we want to or stay up late. Who is winning us or the beast. I for one say the beast is still in control at this point. I am not saying that I myself, don't try to go to bed at the same time and awake at the same time, to avoid getting hit. But I think at that point the beast is managing me not me managing the beast.
Lee
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unsolved1
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Quote:| Sure that there was previously reported by the medical world to be some tentative link between CH and histamine. |
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I guarantee there's a link between clusters & Histamine. Histamine desensitization is still helping me 
UNsolved
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Flash
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Went right through Friday evening with no hits. Head was feeling pretty solid. Then a migraine started at 3am.
When I say migraine I'm referring to a migraine type headache that in my case is induced as a side effect of the CH. The migraine typically never gets beyond Kip5, and usually bopbbles along at kip2-4. It lasts for hours on end, and that's the worst thing about it. Whereas I can usually abort a cluster attack with exercise, food, water, tea, whatever... the migraine is a stubborn bastard. Not nearly as painful though. But includes a little nausea.
Anyway this migraine ran from 3am on Saturday right through until 1am Sunday without a break. There were no CH attacks during this time though. I was able to sleep through the first part of it, although was aware of it's presence. The rest of the day it was just a total pain in the ass.
Was hoping this was me reaching the peak of the episode, because my peak usually involves a low level migraine running in the background with high level and long duration CH hits breaking through. But no such hits materialised for which I was thankful.
Then I slept right through until 1030am on Sunday, and was hit with a CH attack a few minutes later. It was very weak, and went away in under 15mins. So I went shopping, drove 6 miles to the supermarket, go through the door and got hit with something approaching a 7. Was hard to think straight, then the bradycardia kicked in and a couple of times my legs almost bucked. Got the the checkout 30mins later, pouring of sweat and barely able to speak, the woman there must have thought I was a junkie...
Then as I exited the building the attack suddenly cleared up, leaving me with the endorphin thingm so fell into the car and dazed it out for a few minutes before driving.
Head gave me no trouble for the rest of the day, through until 3am Monday. Then I got hit with a series of K5s and K6s with a 30min attack every 2 hours whilst sleeping. Managed to sleep through the 5s - just, but had to tough out the 6s. Then got hit again at 1330 with a kip 4 that lasted 30 minutes. Head feels OK now.
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Re: Can CH be managed?
« Reply #20 on: Aug 7th, 2006, 10:31am » |
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God Flash I am a complicated migraineur too and they are very stubborn and sometimes worse than the ch as they go on for days to weeks. I am praying the baby woodrose seeds will bring some help in prevention and abortion of those as well. You still seem to be having a crappy time of it all.
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unsolved1
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Sorry for my ignorance  But I was under the impression that Flash was one of the biggest supporters and/or creator/contributor to clusterbusters and that mushrooms were his treatment of choice. Do the mushrooms help you or not ? Did they use to but have since failed ? What happened ?
PF Wishes
UNsolved
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seasonalboomer
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Re: Can CH be managed?
« Reply #22 on: Aug 7th, 2006, 10:49am » |
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on Aug 7th, 2006, 10:40am, unsolved1 wrote:Sorry for my ignorance But I was under the impression that Flash was one of the biggest supporters and/or creator/contributor to clusterbusters and that mushrooms were his treatment of choice. Do the mushrooms help you or not ? Did they use to but have since failed ? What happened ?
PF Wishes
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Michael,
Early in this thread (or the previous) Flash mentioned that his supply had been damaged beyond use and he was therefore experimenting until a new supply can be made ready. As you may know, laws in the UK have changed in recent past and therefore all of our friends in the UK have the same laws we must deal with here, and the same care required in acquiring their treatment of choice.
Scott
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pattik
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Re: Can CH be managed?
« Reply #23 on: Aug 7th, 2006, 10:59am » |
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I would also just like to add to what Scott said, that Flash is applying the same pioneering spirit with which he discovered the use of shrooms for CH to "manageing" CH without meds.
Sharing his experiences with us (good or bad) as they are happening, is very unselfish as well as helpful to some of us, IMO. Thanks Flash.
Patti
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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LeLimey
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Re: Can CH be managed?
« Reply #24 on: Aug 7th, 2006, 11:35am » |
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Flash did you try the green tea at all? Or was the nausea from the migraine making that impossible. It sound slike an awful weekend, I'm so sorry. I really hope this was your cycle peaking.
You mention trying to sleep through hits, did you try your usual routine or were you too tired? It sounded a very intense night.
I'm just trying to get a picture of how everything worked or didn't work in relation to before if I'm not explaining myself clearly
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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