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Title: Some questions for chronics ... Post by Dave_Emond on Feb 18th, 2003, 12:51am Well, going on a couple years now as a chronic and I'm wondering if others experience some of the same affects? First off, I was once episodic, cycles ran from January through March. Although I still have attacks everyday, They do seem to worsen during this same time period, is this common among other chronics? Another area: It seems that my "attack periods" each day tend to slowly change time periods over time. Right now, the worst attacks occur usually starting around 7:00 PM, whereas, a couple weeks ago it was around 6:00 PM. This seems to continue on a sort of cycle basis throughout the year, and about every three months or so they hit harder during the day, making it almost impossible to work. It's like the CH is on a constant cycle, changing the time of the onslaught of attacks on it's own clock. I can still, and do get unexpected attacks at random throughout the days and nights and am in constant shadows. But, what I'm getting at is the repeated attacks that hit with maybe 20 minute intervals and keep hitting for hours on end. Is this a common trait for chronics? And finally, do new things trigger attacks? The cold never affected my CH, I even used to use ice packs for attempted relief. Now, if I'm caught out in the cold air, probably 95% of the time this will trigger an attack. Was never a trigger before ... what gives? Just wondering if my experiences are individual, or if other chronics can relate to any or all of these questions? And please, if there are any of you who have been chronic and are not now, I could use the hope that maybe someday this will end for us as well. I'll even take going back to episodic! Thanks, Dave (Hope I'm making sense, not in too good of shape at the momment.) |
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Title: Re: Some questions for chronics ... Post by Roxy on Feb 18th, 2003, 6:54am Hi Dave, and I'm really sorry you are getting hammered so badly right now. I can't answer all your questions, but I know there are others on the board who can. I know there are some who have gone from episodic to chronic...but, I don't know about going back to episodic. It's a nice thought though :). I think that chronics do have cycles within the year....at least, I do. Having a fun cycle myself right now. My attacks never hit at the same time, and the only one I can predict, is the one that hits after I go to sleep. Some people will take a dramamine before bed to stave off that one. It will keep you from going into REM sleep. Having the ch's on a schedule would be nice (if you could call anything nice about these things). Nothing like getting all dressed up to go somewhere, and then not making it to the car >:(. It's not just hard on you....it's hard on everyone around you....I seem to ruin a lot of plans. I think the little SOB's just like to keep us on our toes..... ;) I wish I could help you more. I know you are having a bad time right now...just keep the end in sight. It makes going back to one or two hits a day easy....piece of cake! Just remember that you can make it till the end. Hoping for PF times for you, Tracey :) . |
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Title: Re: Some questions for chronics ... Post by Marc on Feb 18th, 2003, 9:09am Dave, It's good to see you posting. Yes, I'm chronic and I get high/low cycles. Yes, my "hits" shift times, but not in small advances. For me it's more like a week at 10:00 PM, then 10 days at 7:00 PM, etc. with occasional afternoon sessions. No, still can't find a single trigger aside from relaxation and I still crave cold when I get hit. It's been this way since 1997 for me, I'll be 50 later this year - was hoping I'd out grow it by now. Marc |
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Title: Re: Some questions for chronics ... Post by oringkid on Feb 18th, 2003, 9:51am Hey Dave! Good to hear from you. Sorry you're getting hit so badly these days, but sounds like the Melatonin is at least giving you a little extra energy with which to fight. I'm not chronic, but your post has made me get up off of something I have been thinking about for a couple of weeks... This changing of times of attacks and also changing of seasons for starts or rampups for chronics reminds me very much of how a woman's menstrual cycle works. With that, it will start earlier each month, sometimes by a couple of days, sometimes a week. Don't mean to embarass anyone by mentioning this, but it is a great illustration for how our bodies run on cycles and how our cycles don't exactly match the earth cycle (days/nights, months, years) I know that rolling this info around in my head doesn't really do anything to help, or cure or figure anything out, but, sometimes I think this thing is like a 5000 piece jigsaw puzzle and this is just one of the pieces. May not know where it goes yet, but it fits in there somewhere. Interesting about the cold trigger. When I was younger, (I've had these since I was about 11 or 12) In the winter, if I had one in the morning, the walk from my house to the bus stop would abort the attack. Then, like the next year, the walk in the cold would trigger an attack......go figure.....I never have been able to understand that. But ice, still is my first line of defense. I once thought that it made a difference whether I breathed the cold air in through my nose or mouth. Now, as I try to avoid cold weather as much as possible, I don't know what it would do or what, if any, differences there are.... So, in conclusion.....I have not helped you in anyway, but glad to see you posting!! ;D Hope this bad period ramps down for you quickly! Sherry |
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Title: Re: Some questions for chronics ... Post by 9erfan on Feb 18th, 2003, 11:33am Hi Dave, Well, I'll give my .02. I was episodic for the first 14 years and chronic for the last 4. I seem to have "episodes" within my chronic attacks. I'll try to explain. Right now, I've had h/a's every day since Feb of 2001 (OMG! just realized that I just hit 2 years! UGH). Anyway...on really good days they only come every 8 hours or so and are only around a KIP 4. On average days they hit every 5-6 hours and are about a KIP 7. But on the BAD days (and what seems like an "episode" within the chronic period) they start coming about 3 hours apart and hit a KIP 8 -10. In between those 3 hours, the dull shadows continue so the pain never completely goes away. This kind of pain usually lasts for about 3 weeks for me. At the end of those 3 weeks, I go back to having them every 5-6 hours. The "happy" days of them only coming every 8 hours are rare for me although the cycle has been like that currently for the past 2 weeks and I'm thrilled! ;D I haven't had a 10 in a few weeks (knock on wood!). But I can't figure out any type of pattern or trigger for these things. I think that I have probably turned these things into rebound h/a's for myself because the only thing I take in massive quantities is Motrin & Alleve (together) because I don't have insurance. One thing I have noticed is that the h/a's have gotten better since I made a conscious effort to drink a gallon (yes, a gallon) of water a day! Whenever I find that I am not drinking very much water, they seem to start getting worse again. That is the only thing that I have been doing differently in the last few months...pounding the water! Hope this helps Dave! Take care! Virginia |
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Title: Re: Some questions for chronics ... Post by Linda_Howell on Feb 18th, 2003, 11:53am Hi Dave, For a long time now I've noticed that there are times of the year my HA's per day get much worse than at others. Sort of a cycle with-in the Never-ending cycle. I seem to get worse in the hotter months, but I can't say why, as nothing seems to trigger them other than going to sleep. I'm sorry the Melatonin didn't work. It didn't work for me either, but keep the hope alive Dave. Look at Charlie. His just stopped after more than 20 yrs. Linda Howell |
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Title: Re: Some questions for chronics ... Post by Jarvis on Feb 18th, 2003, 11:13pm Hi Dave - I have gone from episodic to chronic and back twice in 27 years each chronic episode lasted only 3 years. ... . I never untill this year experienced a variation in my standard 8-12 attacks a day.... For the first time ever since these began I average about 4 CH a day for the last 2 months and even had a couple days off now and again. Also the time of attacks is random. Going on 6 months now and hope I'm still only episodic..... There is hope. .. .........mj... |
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Title: Re: Some questions for chronics ... Post by Georgia on Feb 18th, 2003, 11:45pm Dave, I was never episodic, so I can't say that my ch worsen during the same period of time as my episodes were...but I can say that I surely have cycles that I go through as a chronic. Not months or seasons, more like weeks of bad times and weeks of not so bad times. Time of day changing through this cycling? Absofrigginlutely. Triggers changing? Hell yeah...once safe things turning to triggers, once triggers turning to nothings, triggers not always triggering.... the endless search for some sort of logic within an illogical beast continues... peace and love, georgia |
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Title: Re: Some questions for chronics ... Post by dizzyd on Feb 20th, 2003, 6:54pm Hi to all, I am new here also and have only posted in the "meds" thread so here goes.............. I too am chronic, started episodic 22 years ago and for the past 10 they changed to chronic. I too seem to have cycles where the clusters are worse. I could never understand this either. When the clusters are not too bad 2-4 Kip I can control them with Excedrin Migraine, ice and coca-cola (or hot tea). When they get between 5-7 Kip with oxygen and a combo of the above but when they hit an 8-9-10 Kip I need to be on preventative meds (Sansert is the medicine that works for me -- doc will not give me triptans with Sansert). I am not sure what triggers the clusters, I sometimes think it is the cold, sometimes the heat, I wonder if it food, stress, etc................can never quite pinpoint it because the times of day always changes (except at night and always around 5:00 AM, then again at 7:00 AM). For a fact, sleep is a big trigger of clusters for me. Although, I do have usually have a cluster at the same time for maybe 3-4 days, then it changes. I always pray for the change and hope that it will be a nightime cycle so I am home and close to my oxygen. It really really sucks to have one when not at home.........sometimes i get so sick from fighting the pain that I am stranded wherever I am until the pain subsides..........definitely difficult to explain ............... It has been a long hard and lonely battle for me, I just found this site and consider myself very lucky to have found it, it so helps to hear from other clusterheads thier experiences, medicines and symptoms. Have you ever tried explaining any of this to a non-clusterhead.......people think I'm crazy......... DizzyD |
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Title: Re: Some questions for chronics ... Post by Dave_Emond on Feb 21st, 2003, 12:07am Dizzy, It may still be a long and hard battle, but at least you don't have to be lonely anymore. These people are fantastic supporters and since they DO understand, they listen and help anyway they can. Then, if you can make a Convention and actually meet other sufferers, you'll find their passion is real, and they really do want to help each other as much as possible. I doubt I could have gone 10 years without finding these folks to help me through. Sometimes they inspire us, sometimes we can inspire them, we all lean on each other. I haven't posted in quite awhile, and you can see all the responses, stick around and get to know as many of these folks as you can, you have a new family and you can trust they'll always be there. Sorry for the reason you had to come here, but glad you found us and welcome. Dave PS: Thanks to all who responded with posts and E-mails, greatly appreciated my friends! |
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Title: Re: Some questions for chronics ... Post by CHILDINSIDE on Feb 23rd, 2003, 9:48pm :'( I TOO AM A CHRONIC. I NEVER HAS EPISODIC. I STATED ABOUT 2 YEARS AGO. I ALWAYS HAD MIGRAINS (OH, THOSE WERE THE DAYS). YES, MY TIMES VARY. I AM IN A CYCLE NOW, AND I JUST FINISHED WITH A VERY, VERY, VERY BAD SET OF CLUSTERS. MINE COMES IN WAVES. THE WAVES GET CLOSER, UNTILL THEY PEAK OUT AT ABOUT 9-10 ON THE SCALE. MY FAMILY WATCHES AND FEEL AS HELPLESS ABOUT TRYING TO HELP AS I DO AT PUTTING THEM THROUGH ALL THIS. YOU SAID, THAT THE PAIN CAME IN AND OUT ABOUT EVERY TWENTY MINUTES? MINE DO THAT ABOUT MID WAYS THROUGH A CYCLE. A CYCLE LAST ME ABOUT 2 WEEKS BEFORE IT PEAKS OUT, CND THEN IN REMISSION FOR ABOUT 2-4 DAYS. IF I CAN HELP, EMAIL ME. |
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Title: Re: Some questions for chronics ... Post by 7yrscronic on Feb 23rd, 2003, 11:02pm Ok dave, I have been chronic for about 8 years now. I too have noticed some sort of "cycle" and time differences. THe winter months I always get hit harder. But not this winter. For whatever reason (knock on wood). The way I treat them now, is to let anyone I know, personally and work. That at any given time, at any given moment, in any given day, in any situation, that I may need to stop whatever I'm doing and run to my car to the "comfort" of what, over the years, has become my best friend. My O2 tank. It's always there, and it keeps me from killing myself. Just like a best friend. Of course I have everyone here too. But I'm not always able to be online. -Todd |
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