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Title: what's a typical day like for a chronic Post by Connie on May 2nd, 2005, 9:25pm Does this sound like a typical chronic Clusterhead? My husband has been in cycle 71/2 months, (never this long before) for the past 3 months he goes days without any meds or O2 then out of know where gets the temple/eye pain. Sometimes he is able to ride them out and sometimes has to use the o2 (10 liters for 5-10 minutes only). Then good for a week and same thing again. Not severe and able to function pretty much normal. I keep telling him he is winding down from the cycle but not so sure anymore. I know that no two clusterheads are the same but any comments would be appreciated. |
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Title: Re: what's a typical day like for a chronic Post by E-Double on May 2nd, 2005, 9:32pm Wake up (if slept) shower go to work.... Get hit...deal with it go back to work get hit deal with it........LIVE MY LIFE We are all different. Some days are better than others but for the most part that is the same story that anyone on this earth will tell you ;) I have only had 1 day where I had to call it "quits" for the day.....last wednesday I needed a break and went to the hospital.....next day recovered from all the meds and then ....back to work :) No worries NO complaints! Part of Life.... Stay positive! and Breathe! Those are the tricks :) Eric |
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Title: Re: what's a typical day like for a chronic Post by Connie on May 2nd, 2005, 9:37pm thanks for the reply. Do you ever go days without getting hit and how long have you been chronic? do you find that you need to be on verapamil or any other medication? Connie |
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Title: Re: what's a typical day like for a chronic Post by E-Double on May 2nd, 2005, 9:47pm on 05/02/05 at 21:37:28, Connie wrote:
Was episodic for 9 yrs......went chronic recently.....only diagnosed this cycle.......First time on meds too so I can't answer..I don't know if I need or not. I will say that abortives including Oxygen are a blessing I have had 2 brief periods since last May where Iwas PF for a few days actually a full week then things picked up again. There are days which I do not need to use my abortives... I can just use Ice or a quick pace...today....froze the side of my head but no need for trex ;) Somedays just have heavy shadow but no "Full attack" All good...I am a lucky man who loves his wife, work and life. Just gotta live..... |
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Title: Re: what's a typical day like for a chronic Post by Connie on May 2nd, 2005, 10:01pm You really have a good attitude, but I guess you have to in order to survive this horrible infliction. Good luck with your battle and may you have many painfree days ahead. |
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Title: Re: what's a typical day like for a chronic Post by yikes-another-one on May 2nd, 2005, 10:02pm I was episodic for 6 years. Then in September...things changed. I started getting a level 3 at 6:30 every morning and a level 4 or 5 at night at 10:30 pm. In between, I may not have any headaches, or i could have 4 to 6 of them. usually level 4, 5, or 6.... but at my normal cycle times i had up to 8 headaches at the higher levels....and sporadic too. like at 12 pm one at level 7 and at 4 pm a level 4 and an 8 pm back to level 7..... Just fun, fun fun. I can deal with level 4. I can usually deal with level 5... I mean i want to take something, but nothing works anyway...so i mutter and work through it. Level 7 well, I hold my head, can't watch TV, can't sit, can't dance...just miserable.... and level 8...well, I usually would take a Zomig... but I always wait too long...so it doesn't really lower the pain that much, and then I am sorry .... ;) If you are getting many days between it is great. When I first started this weird journey, i would get headaches Every sunday.... they would be on and off every so mnay hours until wed. then I would be pain free until Sunday at 4pm. and it would go on for only a month... then I would be pain free from March until Oct.... then October I would have headaches, not in November, then in December i would....not January...but February and then I'd bee pain free until June. Every one of us has a different "cycle" or pattern. But when you journal it, you will see stronger hits spread out...and lower hits clustering around. Some are a strict pattern. Others vary from year to year. It is a strange ride, and hopefully you find some info and lots ofhelp online. These people are the best! They are helpful and caring and I would not be surviving this if it weren't for these great kind people. I'm glad you are here, sorry that your husband has the pains, but still, there is hope around here, and lots of healing laughter...and tons of great information. Best of luck!!!!!! |
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Title: Re: what's a typical day like for a chronic Post by HAMMERED on May 2nd, 2005, 10:02pm I am afraid I have just become chronic. I take verapamil, but I wonder about it stopping anything. I have gone 2-4 days pf but the ch I have are not as bad as a few weeks ago and I can function. O2 and trex will work. I keep waiting and hoping. I know the demon is still with me because he has caused my left palate to always be slightly swollen. I know from the past that as long as that is there , the demon is still around |
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Title: Re: what's a typical day like for a chronic Post by Connie on May 2nd, 2005, 10:08pm I am certainly no expert on chronics, but I would not worry until after you approach 7 months (like we are). My husband has had CH for 11 years now and most of his cycles were 6-8 weeks 1 -2x a year. Then four years ago he had a horrible four month cycle and then went into remission for 4 years until this past September. Still in cycle. Hope he is not chronic either but I guess time will tell. |
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Title: Re: what's a typical day like for a chronic Post by Sean_C on May 2nd, 2005, 10:11pm Chronic fear |
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Title: Re: what's a typical day like for a chronic Post by nani on May 2nd, 2005, 10:24pm Chronic since 1999. Recently finding relief with kudzu. (Read all about it on the medications board.) I have never had more than 3 pain free days in a row. My hits and shadows usually stayed pretty manageable (no higher than k6). Occasionally, I would suffer severe episodes, with fewer shadows but more intense hits. I could shadow for up to 6 hours a day and would get hit about 2X a day. |
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Title: Re: what's a typical day like for a chronic Post by hdido on May 2nd, 2005, 10:39pm Been chronic for 10 years, get the occasional short remission-meaning hours-relatively pain free. Normal day: wake up w/CH pain or it starts within the hour, take my meds (morphine, fentanyl, diazepam, verapamil), get enough relief to shower and go to work, driving makes pain worse, take meds throughout the day to keep the pain reasonable-get about 6 attacks a day, usually with only a half-hour break in between; get home, try not to take any narcs, if lucky fall asleep from the day's meds and work, otherwise take sleeping pill, next day start all over again. Bummer: no high from any of my meds, just some pain relief and lots of constipation-a literal pain-in-the-ass! Tip: buy stock in Preparation H! I think that I support that company. Getting tired of all of this, will probably have DBS surgery this summer-can't take another 10 years of constant pain, tried all known meds and some unknown ones, no effect except from the opiates, hate taking pills every day-fucks up my sex life for sure-buy stock in Viagra too! |
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Title: Re: what's a typical day like for a chronic Post by Connie on May 3rd, 2005, 8:48pm just terrible, I really feel for you, and all of you chronics (and episodics) that hardly get any relief. Feel kinda foolish complaining about what we are going through. I can relate though, his last cycle was total torture. Pain free days to all |
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Title: Re: what's a typical day like for a chronic Post by E-Double on May 3rd, 2005, 9:00pm DON'T YOU DARE FEEL FOOLISH!!!!!!! 1 hit is too many! |
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Title: Re: what's a typical day like for a chronic Post by Gator on May 3rd, 2005, 10:12pm Let's see. On the average day: 1:30am - Attack #1 Back to sleep sitting up assuming I can sleep 3:00am - sometimes, but not always, get extra attack 6:00am - get the wife and kids up for work and school 7:45am - everyone finally on their way 8:00am - Attack #2 Get laundry started, clean kitchen, check ch.com and ch.org 11:00am - Attack #3 Work in wood shop, odd jobs around the house, finish laundry, check ch.com and ch.org 4:00pm - Attack #4 Pick up kid from school, start supper, check ch.com and ch.org, serve supper, time with wife and kids 9:00pm - Attack #5 Spend time with wife, work in wood shop, check ch.com and ch.org 11:30 attempt to go to bed, sleep sitting up if I can sleep at all - usually fail and end up at the computer to check ch.com and ch.org Occassional shadows in between attacks. Well, right now near constant shadows between attacks since I started taking Baclofen. Get extra attacks and/or stronger shadows when storm fronts move through like today. No preventatives that work - yet. Only O2 and Imitrex injections for aborting, but I usually don't use the trex when I am home alone. I save it for when the wife is home so she doesn't have to see me suffer. I'm lucky. I've only been doing this for about 18 months without much more than a day or two break here or there to speak of. Some people have been doing it for much longer. Don't worry about going chronic. If it's gonna happen - it's gonna happen. Worrying won't change anything. Live for today. Don't worry about bi+ching or complaining, either. That's just another of the services we provide here. Rant, rave, whine and cry all you need to. Get it out of your system so you can continue to battle the beast. As a supporter, don't foget to take care of you, too. This disease is hard on supporters. More so if they don't take a little time for themselves now and then. Know that you are very much appreciated. If you haven't already done so, pop into the Supporters board and meet the crew there. Lots of experience and help from people who have been there many times over. |
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Title: Re: what's a typical day like for a chronic Post by Sean_C on May 3rd, 2005, 10:45pm I had to laugh Mike, I think you check ch.com more than me [smiley=laugh.gif] Sean....................... ;;D |
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Title: Re: what's a typical day like for a chronic Post by Gator on May 3rd, 2005, 10:57pm What can I say, Sean. I'm addicted to this place. If they ever do find a cure, I'm gonna suffer from extreme ch.com withdrawals. |
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Title: Re: what's a typical day like for a chronic Post by Sean_C on May 3rd, 2005, 11:03pm I'll be at the clinic with ya LMMFAO [smiley=laugh.gif] Sean................. ;;D |
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Title: GuysRe: what's a typical day like for a chronic Post by aladinsane on May 3rd, 2005, 11:58pm Hi guys, I am in the midst of an episode andd yesterday I woke up realizing that the left side of my face feels numb as if i just came from the dentsit office, is been 24 hrs hence and nothing has changed, I have very little movement on my left face, i can't eat nor drink properly without spilling liquid or food, I"M SCARED, I am new to my job and my med insurance won't kick in until the 1st of June, tell me, ive been properly diagnosed of CH 2 yrs ago, but ive been misdiagnosed for 14 years, is this numbness and lack of movement on the left side of my face normal, PLEASE I NEED ANSWERS, I'M SO SCARED |
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Title: Re: what's a typical day like for a chronic Post by nani on May 4th, 2005, 12:14am I think you should see a dr. There is something called Horton's Syndrome where your CH eye can droop permanently, but I'm not sure if there's any numbness. IMHO it would be best to rule out anything more serious. PF wishes, nani |
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Title: Re: GuysRe: what's a typical day like for a chroni Post by Gator on May 4th, 2005, 12:20am on 05/03/05 at 23:58:35, aladinsane wrote:
I've not seen this in anything that I have read and have definitely never experienced it. There may be others who have, though. I would suggest getting your butt to a doctor. What meds (prescription, otc, vitamins, herbals, etc.) are you taking? Is it just in your face or is it in any part of the rest of your left side, arms, legs, etc? What were you doing the day before you woke up like this? While you are at it, go over your ch symptoms. Maybe that will give a clue as well. |
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Title: Re: what's a typical day like for a chronic Post by aladinsane on May 4th, 2005, 12:45am thank you so much, but in as much that i want to see a DR asap, my med insurance won't kick in by the 1st of june...Yes, i am very aware of the drooping eyelid syndrome, which I have, but what i experienced yesterday was totally different, i still feel pressure in my head. No other part of my body, as of press time, feels numb or dull. Did you think that I had a "silent stroke"? |
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Title: Re: what's a typical day like for a chronic Post by Gator on May 4th, 2005, 1:05am Don't know enough about you or your situation to be able to say anything intelligent. Stroke and Bell's Palsy immediately come to mind. There are a few nurses that are members here. Hopefully one of them will be along soon. In the meantime, I'd Google your symptoms and see what you come up with. Check out this page and see how your symptoms match up. http://www.bellspalsy.ws/symptoms.htm |
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Title: Re: what's a typical day like for a chronic Post by aladinsane on May 4th, 2005, 1:15am Thank you so much for the info, thought I've check the site earlier, however very few of the symtoms are related to mine. I certainly appreciate your concern, GATOR. I will try to cal my HR tomorrow and see if they can have my med insurance activated ASAP rather rather than June 1st |
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Title: Re: what's a typical day like for a chronic Post by purpleydog on May 4th, 2005, 8:36pm on 05/02/05 at 21:32:42, E-Double wrote:
Up at 4:30, hit at 5:00. Go to work. Sometimes I won't get hit again until a little after 11 at night. Other days I get hit at 9:00, 11:00, 3:00, 5:00, morning and night. And I don't go to sleep before 1:00 am, or I will get hit for sure. I deal with it as best I can. Some days I don't deal well at all, but deal I do. I live my life. It's the thing that keeps me going. |
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Title: Re: what's a typical day like for a chronic Post by Karla on May 5th, 2005, 12:32pm How is it like. For me it was an ultimate Hell to be living in. I used to get hit 8x/day and was non responsive to anything. Now I am eposodic so don't go worring about me so much I am on the duragesic patch as needed and it takes care of all my pain issues. |
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Title: Re: what's a typical day like for a chronic Post by kissmyglass on May 5th, 2005, 6:40pm I've been "in cycle" for about 5 years now & the beast is winning. I've about had enough. I haven't even come here in a few months, don't even want to read about this fuckin misery anymore. >:( Kev |
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Title: Re: what's a typical day like for a chronic Post by Jonny on May 5th, 2005, 8:09pm on 05/02/05 at 22:08:12, Connie wrote:
Well I am, and it should be "One year"......seven months is shit!!! After 30 years it pisses me off when people like to think the worst when they have not seen it, seven months is a hell of alot of pain but it don't mean shit in chronic land, lady! Your right!, your no expert....so please don't offer your opinion on this board if you don't know what your talking about. Especially when you don't even have CH. Edit to add..............Kev, you hang the fuck in there man.....or give me back my 02 tank you fucker!!! |
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Title: Re: what's a typical day like for a chronic Post by mynm156 on May 5th, 2005, 9:46pm [smiley=laugh.gif] Jonny RARE form today buddy. |
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Title: Re: what's a typical day like for a chronic Post by Connie on May 5th, 2005, 10:12pm WELL EXCUSE ME. I THOUGHT THIS WAS A SUPPORT GROUP. "This lady" was not trying to offend anyone, just offering my opinion like you are. |
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Title: Re: what's a typical day like for a chronic Post by don on May 5th, 2005, 10:19pm You tell em Connie. |
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Title: Re: what's a typical day like for a chronic Post by Kevin_M on May 6th, 2005, 12:21am on 05/02/05 at 21:25:03, Connie wrote:
I'm episodic and have always had six to nine month cycles, yearly. Next week will be seven. Don't get pain free days or one's to ride out in the duration without a constant prevent but it has always ended at some point. Stay with the program and just keep beating it until it's gone. My philosophy has been to not let it keep getting foothold or find an opening again. I maintain lowered levels of verap in the last couple months, and just hope it gives up trying. Going off an effective prevent before it is through seems to allow it to keep trying to build up steam again continuously, for me, and it does daily. Whatever time off I can get is something to shoot for still. Kevin M |
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Title: Re: what's a typical day like for a chronic Post by sandie99 on May 6th, 2005, 5:17am Connie, my days vary in great deal. Last spring for an example was very difficult, this has been easier (thanks to verapamil 600mg). But I keep my painkillers always near! But on bad days, I force myself to do all the things I have to do. Meaning the things I can't possibly do any other day. But as a student, it's bit easier than to those among us who have a 9-to5 jobs... I can plan my schedule quite freely, especially now. I have noticed that although ch attacks have been milder and easier to live with lately, I still keep on posponing reading some books... The biggest change is that I'm prepared better than I've ever been. I live my life as full as I can between the attacks. When I'm PF, I do as much as possible. When ch comes, I take it one attack at the time. I did feel quilty in one point about having them but not anymore. After all, I've done all that I can to get rid of them. :) I wish your husband the best. And I think it's so wonderful that you're there for him! My closeones don't understand ch at all, so I know very well how important support can be. :) |
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Title: Re: what's a typical day like for a chronic Post by miapet on May 6th, 2005, 11:03am D was chronic for about 20 years .. .on a good day he would only have one or 2 daytime hits, and only have one or 2 night time hits . . .at bad times, he would get hit every hour .. .BUT, woohooooooooo, not anymore!!! btw, we are firm believers that triptans cause rebound h/as, as do many other drugs (both scripts and otc). *positive light and energy* miapet |
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Title: Re: what's a typical day like for a chronic Post by Candycane on May 8th, 2005, 9:40pm Well, I am chronic and without preventives I am a total wimp!! Even with verapamil/lithium combo I just go day to day like everyone else and some weeks are fine and some are a trex must. I just try to pretend I don't have CH most the time, works best for me!! |
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Title: Re: what's a typical day like for a chronic Post by Candycane on May 8th, 2005, 9:43pm Did I mention the nights suck?Forget sleep unless really drugged or just do something else all night,lol If my baby was here!! |
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