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toader
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question regarding headache triggers
« on: Feb 8th, 2004, 10:32pm » |
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Hi this is boomboom, toader's wife, who can't look up her own password since all of msn seems to be down. But we digress. This is toader's first cluster headache episode. It started first week of December and is still going strong! I guess we don't know how long this is going to last. A few weeks ago, he was just having what he calls shadows and all the good vibe messages from this awesome site were keeping his spirits up, and we were kind of expecting for him to be getting better. But in the past 7-10 days he seems to be getting hid hard at least a couple of times a day and a couple of days he has been at a level 5 or 6 all day. Today he was having a relatively mild day and when this afternoon, the sun came out from behind the clouds (an event we don't take for granted in Seattle at this time of the year), we went for a walk. The air was somewhat cool yet pleasant. After about 15 minutes or so, I could tell that toader has been hit hard with an attack. We made it home and after some oxygen and an imitrex shot, toader is doing OK. But it got me thinking. Every single time toader has gone swimming or gone for a walk he has gotten hit with a really bad attack in about 10-15 minutes. He is in pretty good shape, so he is in no way really exerting himself. Does anybody else have such an experience? Could it be the cold somehow triggering it? At times he puts an ice pack on his head to reduce his pain, but that is applied to a particular part of his head where the pain is. During the walks or in the cool swimming pool his whole head/neck gets cold. Well, I guess I am reaching, but I appreciate anyone's two cents worth.
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Renee
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Re: question regarding headache triggers
« Reply #1 on: Feb 8th, 2004, 10:38pm » |
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Sometimes the bright sun can bother my ch's after being indoors or cloudy for several days, especially if i'm still having shadows.
Also, if i'm having shadows many times ANY physical exertion brings on a ch, especially if i'm bending down alot.
Not much help, just a lil input!
Stay with us!
Renee
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RevDeFord
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Re: question regarding headache triggers
« Reply #2 on: Feb 8th, 2004, 10:40pm » |
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The 2 things that are almost guaranteed triggers for me are major seasonal changes, and almost always 7-10 days after a really late night out. Like lockins and things like that, I can guarantee 7-10 days afterwards I start a cycle. So I try to avoid those things like the plague.
Others have different triggers though. I don't think there is a hard and fast rule.
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amen
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>:(Re: question regarding headache triggers
« Reply #3 on: Feb 8th, 2004, 10:42pm » |
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Triggers are different for everyone. For some it's hot, for some it's cold. For most it's alcohol. It's best to just avoid anything you might even just THINK is a trigger when in cycle.  . Sorry to hear he is getting hit so hard. I am sending VIBES. It's great he has a wonderful supporter like you.  My husband just doesn't understand. I usually hide when I'm getting hit though. I'm sure that makes it even harder to understand. Plus, he's not the type who would even think about visiting this site. Anyway, he's lucky. Good luck. Hope it ends soon.
Andrea
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TxBasslady
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Re: question regarding headache triggers
« Reply #4 on: Feb 8th, 2004, 11:41pm » |
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I have to agree with Andrea.
I am convinced that there is not 2 of us here that are the same. Just as different meds work for different folks, I believe that each of us have our own individual triggers.
There are some here on the board that find physical exertion helpful DURING a CH. Some go outdoors and run in the middle of the night.
Those of us with CH are just doomed for misery, I guess.
I wish that somewhere.....anywhere....we would be able to find some sort of common thread for CH. How is it that it so damn different for each of us? This totally baffles me. Surely.........one day......we will have the answer.
Sure sorry that your hubby is having a rough time. Hope things get better for him 
Sending lots of PF vibes to him.......and thank you, for taking the time to post and please stay in touch and let us know how he is doing.
Jean
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Rick_K
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Re: question regarding headache triggers
« Reply #5 on: Feb 9th, 2004, 12:19am » |
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boomboom and toader,
What triggers an attach is different for all of us and I think changes over the years with each cycle, there are some that never change like beer. For me, I will avoid anything that was a trigger in the past or anything I think could be a trigger, except for life, that must go on. I know I get anul in avoiding possible triggers but I'm not inviting the beast for a visit as long as I can help it. If going for a walk brings one on than don't do it. The beast is going to visit whenever he damn well wants whether it's at work, sitting on an airplane, taking a walk or whatever, just don't let him win. I know it's easy for me to say but having been there and done that for the last 35 years I guess I've just learned to put up with the bastard since I have no choice. It will get better...
toader, wishing you PFDAN to come VERY soon.
Rick
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t_h_b
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Re: question regarding headache triggers
« Reply #6 on: Feb 9th, 2004, 12:59am » |
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BoomBoom, I agree with everyone above that triggers vary from person to person. When I mow grass in the summertime I get hit, even with an electric mower. Is it the sunlight? The heat? The physical exertion? The strong odor of cut grass? Dehydration?
It's probably just one or maybe two of those things, but CH hurts so bad that you become almost superstitious and avoid anything associated with an attack.
Don't stop taking walks: you can't allow your husband to avoid the enjoyable things in life, and a lot of neurologists even suggest aerobic exercise to help prevent clusters. But next time you go for a walk, take some Imitrex along with you so if he get hits you can take care of it.
Good luck.
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| « Last Edit: Feb 9th, 2004, 7:02am by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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bobkip
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Re: question regarding headache triggers
« Reply #7 on: Feb 9th, 2004, 1:52am » |
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Boombom,
Gotta agree with the rest, there is no universal trigger. Mine is MSG, chocalate, heavy scents, etc. Damn, we are all so different but share the common severe head pain.
Kip
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Mark C
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Re: question regarding headache triggers
« Reply #8 on: Feb 9th, 2004, 3:14am » |
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I looked for 20 years outside my head for something that may be causing this pain. So far alcohol is the only sure trigger for me, in cycle.
PFDAN's
Mark
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Kevin_M
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Re: question regarding headache triggers
« Reply #9 on: Feb 9th, 2004, 6:10am » |
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Well, I don't drink, and I've gotten CH while a non-smoker and as a smoker. I'd assume alcohol would not help the situation and would most likely be a trigger.
Triggers for me are undefinable. While in cycle, I'll wake up three times a night, what's that trigger, rem?
You have to sleep.
Staying routine with eating and sleeping has been mentioned to help. So I've stayed routine. CH anyway.
My doctor mentions smoking. I wasn't a smoker when I first got them. Then smoked, then quit two years, then smoked, then quit ten months. No difference for CH.
I guess I am not one to be finding or blaming triggers for CH. I am not convinced they are brought on by triggers. They just come whenever they damn well feel like it. Certain things may enhance their frequency, but they are going to happen.
My doctor has tried to pin a trigger on stress. Again, anyone can get a headache from stress. I do not have a stressful job and do not feel stressed at all and never get headaches from stress or any other reason during periods of nonCH. When I have had stress, during a nonCH period, it did not bring them on.
Psychologically, I get a forebearing twinge on my way to work though, but my job is not stressful. I think it is a conditioned response because I may be worried about getting them at work, and if you think about something hard enough, it may just happen. But I think that is psychological, not a physical trigger.
In all, I tend to not believe in triggers for this affliction. If I were to pin a trigger on say chocolate and alcohol, and stayed away from chocolate and alcohol, that surely would not prevent them from happening anyway.
I mean if simple sleeping can even bring them on, then why not waking, going to work, coming home, taking a walk... you see where this is leading.
I do have one thing to say as to regarding triggers is the consistancy of which they occur at a certain time after falling asleep, but that cannot be prevented in anyway over a long period of time. If I were to not sleep for a long time, I bet I'd get them anyway also.
But relaxing after any average or taxing day, that is when CH likes to pounch most assuredly. Though, as far as calling that a trigger, I would hesitate, because there is a co-relation, for me, but many times I am relaxed and don't get them.
CH seems to be an opportunist and can make any occasion a chance to display its abilities.
As far as triggers go though, quitting smoking, or drinking, or whatever, taking walks, would not repress them. Triggers to me as a reason for an occurance hasn't been able to hold water, to me.
Kevin M
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Mark C
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Re: question regarding headache triggers
« Reply #10 on: Feb 9th, 2004, 6:26am » |
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You are correct in your observation about sleep...I forgot that one. Sleep, especially REM triggers the beast as well as Fall tends to trigger cycles. The hypathalomous controls both our sleep cycles and I am certain the lenghth of day, or shortness of triggers my cycle. Many of us get hit in the Fall...and in our sleep. The beast ripping out an eye while in deep sleep is common. Insomnia is a common problem shared by many of us too.....geez....this shit sucks 
PFDAN's
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Edski_1
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Re: question regarding headache triggers
« Reply #11 on: Feb 9th, 2004, 6:36am » |
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Sorry to hear todaer is still getting hit Boomboom... 
I tend to agree with Kevin, at least from my personal experience...triggers, if the exist, are hard to pin down. If anything I've experienced comes close, I'd say a glass of bourbon *might* have a correlation, but it's not definite...I have noticed that I still get a slight twinge after a beer in the afternoon sometimes (which tells me I'm still in my cycle despite the good work the topamax is doing for me).
When my cycle started in October I had just bought a bag of pot that was, shall we say, not all that high quality...thought that was a *trigger*. Recently found the remnants of it, and guess what? Has no trigger effect whatsoever...was never really sold on the the trigger concept, but the timing was that coincidental that it was hard to ignore.
I suppose taking the imitrex with him on the walks might be an approach. Perhaps the explanation lies in the adrenaline theory...perhaps the relaxation the walks are promoting are a signal for the beast to come out? Seems that for a lot of people this is the case, the beast comes at the times they want it least. 
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bubu
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Re: question regarding headache triggers
« Reply #12 on: Feb 9th, 2004, 11:13am » |
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i like mike c's road sign!
i am rsponding to his answer to the triggers and you talk about REM and insomnia,
my name is bubu and i had ch 15 to 40, and pf until ten days ago, that means 7 years pf and i am 47, so, this site is new and its first contact for me! it is such a comfort, i thnk about you guys all day as i wait in dread, i compose letters and write you all poems while i wait for the last few minutes of bearable pain to dissappear.
i got on today to ask about triggers and iread this first before i posted, my questions were answered. even though the answer is usually nothing works, nothing in common, we are all different; you guys are together and if i may say so myself its about the greatest thing that has happened in my CHing life! i love you all!
as for no sleep, i get hit hard at night, 3-4-5 6- times, and in the morning ( iwork in the afternoons) if i go back to bed, its boomboom again, so...on this website i have had two suggestions; take before bed;1:melatonine, 2:valium, any imput?
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Cerberus
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Re: question regarding headache triggers
« Reply #13 on: Feb 9th, 2004, 12:20pm » |
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BoomBoom,
I have clearly not been able to define what triggers my CH as of yet (of course I really should start keeping better track of the events while in my cycle). I do notice (only sometimes) that extreme temperatures can trigger an attack for me. That seems to work either way hot or cold it doesn't seem to matter.
I have said before that nothing is typical about CH exept that it is extremely painfull and always hits the same side.
But reading your post prompted me to this thought
Quote:| Every single time toader has gone swimming or gone for a walk he has gotten hit with a really bad attack in about 10-15 minutes |
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It would seem to me that strenuous exercise or the chlorine might be a possible trigger for toader. If what the above mentioned is true. Course the only way to know for certain is to repeatedly do both which would seem redundant since its the pain you are trying to avoid.
The increase in the pain Toader is having may be due to the possibility that his cycle is peaking, which would mean its all down hill from here (keep a log or record of some sort of when, what times , what he was doing and how bad it was when each attack hit) then it will be a bit easier to observe trends in his cycles and avoid doing, eating, or whatever that seems to be causing his pain.
Thats the best I got fer ya, good luck!
Ramon
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henzey
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Re: question regarding headache triggers
« Reply #14 on: Feb 9th, 2004, 1:36pm » |
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on Feb 9th, 2004, 11:13am, bubu wrote:| ion this website i have had two suggestions; take before bed;1:melatonine, 2:valium, any imput? |
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Hey, welcome to the board:
This is a great group of people to talk to about various options. I am sure that the melatonin has been used by several folks here with varying levels of success.....I suggest starting with 1 mg and see what happens. If that makes your headaches worse, then take .5 mg the next time. If it makes it a little better, but headaches still come as before, then try 2 mg. However, if you see no change at all, you may be one of those that melatonin does not help. As to your second option, I have not read much here about taking valium.....did you mean verapamil??
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| « Last Edit: Feb 9th, 2004, 1:36pm by henzey » |
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dodie
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Re: question regarding headache triggers
« Reply #15 on: Feb 10th, 2004, 11:56am » |
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Hi,
I'm a newbee at CH.com but I have had CH's for 10 years.
In my experience, the sun or reflection off of water or snow is always a trigger for me. I am also big on outdoor activities, so I would suggest always wearing sunglasses with UVB and UVA ray protection, and you can get the really cool leather sides to protect the light from entering. They are expencive but worth it, check out your local sport/ski shop.
I have found that the cold air outside helps my shadows go away. I dont know if its the cold air or just the oxygen intake but outdoor exercise also helps me.
good luck to you
dodie
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echo
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Re: question regarding headache triggers
« Reply #16 on: Feb 10th, 2004, 5:30pm » |
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Time changes going to either coast.
Daylight saving changes (most)
Altitude
Air travel above 30,000 feet upon approach to the destination airport.
Chardonay wine.
Any beer other than Miller High Life
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| « Last Edit: Feb 10th, 2004, 5:34pm by echo » |
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kim
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Re: question regarding headache triggers
« Reply #17 on: Feb 10th, 2004, 6:02pm » |
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Sorry toader is still struggling.
This is probably going to sound weird. Nevertheless, i speak from years of experience. So, mebbe it's got some merit.
When clusters get in the groove, and the pattern has established itself - every time your emotions change from high to low or vice versa; it's the CHANGE that triggers. Being hungry and then pigging out and getting full. Being bored and depressed about the headaches then suddenly going for a walk outside......all these things are something that clusters feed on.
In my experience during the "eye of the storm" i flatline. Emotionally, i mean. Hard to explain. But the differentials in the brain and environment play a HUGE part in my cycles. For me, it is best not to step outside the box (so to speak)....
Toleya it'd sound weird.
Well wishes
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KevinD
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Re: question regarding headache triggers
« Reply #18 on: Feb 11th, 2004, 12:37pm » |
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I've been to 3 funerals in the last 2 weeks and have gotten hit at each one (seriously!) I don' t care who dies, I'll just send flowers next time.
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KarynG
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Re: question regarding headache triggers
« Reply #19 on: Feb 13th, 2004, 10:59am » |
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The only trigger guaranteed to bring on a CH for me is alcohol. I give up my wine in cycle, but for months afterwards if I get a regular wine headache (certain types give me regular headaches), it is only on one side like a shadow.
All the other things have seemed like timing to me. I have had clusters while strength training but also had many days without any problems in the gym while in cycle.
Other things BOTHER me in cycle but don't actually trigger an attack for me.
Hope things are MUCH better soon.
Karyn
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duck_soup
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Re: question regarding headache triggers
« Reply #20 on: Feb 16th, 2004, 11:38pm » |
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When in cycle, alcohol definitely sets it off. Also, any close work like staring at a CRT . It's so bad with the alcohol that I was having this dream that I was at a wedding and everyone was going to toast the bride and groom. I told myself no because of the ch's. Then I figured what the hell, it's a freakin dream and toasted away. Don't you know I woke up with a headache
Only funny story I have in 25 years of CH.
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henzey
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Re: question regarding headache triggers
« Reply #21 on: Feb 17th, 2004, 3:26pm » |
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on Feb 10th, 2004, 6:02pm, kim wrote:
In my experience during the "eye of the storm" i flatline. Emotionally, i mean. Hard to explain. But the differentials in the brain and environment play a HUGE part in my cycles. For me, it is best not to step outside the box (so to speak)....
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Kim, I thought I was the only one who had this experience. This episode has been just like this....I thought I was over this episode twice and then I got emotionally up or down over something and bam!....it came back. So, like you, I am just trying to stay on an even keel....not let myself get too worked up over anything.
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| « Last Edit: Feb 17th, 2004, 3:27pm by henzey » |
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