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phil_h
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The rest of you Chronics
« on: Oct 17th, 2007, 9:32pm » |
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I get 5-6 hits daily.......occasionally a kip 4 , but mostly 5-8's.................. there seems to be a cycle in there that is beginning to ramp up to higher kips with longer duration............ the last 2 weeks I've been having like 7 hits a day and kip #'s rising...........Is this a cycle within being chronic ? ....this worries me because last year I began ramping up around the same time of year and progressed into 8-10 hits daily for a month, with mostly kip 8-10,s..... alot of 10's............Iguess I should call my neuro and try and move up an appt..... My wife told me today that it's getting hard hearing me moan and scream out of my sleep........... so I looked at last years pain calendar and this looks like a repeat............. I dread the 10's................. phil h
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Angels are among us ........beasts beware !!!!!!
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E-Double
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Re: The rest of you Chronics
« Reply #1 on: Oct 17th, 2007, 9:48pm » |
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hang in there brother! It could be a high cycle within. It sucks when things change and are unfamiliar
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I can't believe that I have to bang my Head against this wall again But the blows they have just a little more Space in-between them Gonna take a breath and try again.
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Jonny
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Re: The rest of you Chronics
« Reply #2 on: Oct 17th, 2007, 9:51pm » |
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Phil, Have you tried the "Chronics cocktail"? Its Lithium and Verapamil......after 23 years chronic it nearly stopped the CH in its tracks (80%)......anything that broke through I killed with 02, I had my fucking life back after all those years in hell! Im not sure what you have tried, but if you havent tried that it wont hurt to try, bro!!! Good luck!
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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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Gator
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Re: The rest of you Chronics
« Reply #3 on: Oct 17th, 2007, 11:20pm » |
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Phil, I see a lot of chronics here say they have "high cycles." For me, this time of year and again in the spring, the hits seem to come more often and more severe with a lot of shadowing in between. Hang in there, bro. Talk to the neuro and keep us posted. Rant, kick and scream if necessary - we're here for you as much as we can be. Mike
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sandie99
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Re: The rest of you Chronics
« Reply #4 on: Oct 18th, 2007, 3:49am » |
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Lots of PF wishes Sanna
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« Last Edit: Oct 18th, 2007, 3:50am by sandie99 » |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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rolo65
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Re: The rest of you Chronics
« Reply #5 on: Oct 18th, 2007, 5:05am » |
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on Oct 17th, 2007, 11:20pm, Gator wrote: I see a lot of chronics here say they have "high cycles." For me, this time of year and again in the spring, the hits seem to come more often and more severe with a lot of shadowing in between. |
| I also get it the worst in the spring and fall. I second the lithium, it is doing wonders for me. Verapamil does nothing but make me tired, and the RC seeds helped but were not enough to whack it down and be worth the trouble. I have been on the lithium for 2 month now. I used to go through 2-3 M tanks a week, and have used 2.5 tanks in the last 2 months. Lithium is also very cheep, $25 (without ins) for a month supply. That’s what 1 M tank costs! I take 600 mg per day. If I do 900 mg per day they go away completely but I had to cut back to 600 because of SE’s. The SE’s are getting better so I may try going back to 900 if I start getting more than 1 hit in my daily 5-7 PM window. For now though its usually 15-20 min at K2-3 so I’ll wait and see. If I miss a pill, my every 2 hour hits start right up again and hit K6-8. Sometimes 10 hits a day. I have been chronic for 5 years now and the lithium is the only thing besides O2 to help at all. It is nice to not be afraid of going to sleep anymore. I wake up to the alarm clock, not the O2 mask and fork in the eye. It’s great to sleep through the night! PFW, Rolo.
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« Last Edit: Oct 18th, 2007, 5:14am by rolo65 » |
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BarbaraD
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Re: The rest of you Chronics
« Reply #6 on: Oct 18th, 2007, 7:48am » |
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Me, I've been on topamax since 99 and it's been a miracle for me (I take the WHOLE dose at night to kill the side effects that others experience who take it the way the directions say). And yes, there are "high" cycles for chronics (spring and fall are bad times for all of us it seems). And we have break-thrus every now and again, but for the most part when you find the right "cocktail", you can live a fairly "normal" life (for a chronic cher). I shadow all the time, but consider a 3-4 a pain free day - it's just a part of life for me and I guess you just get used to it (at least I have). When it gets above that I down a can of Red Bull and hope it levels off. I keep O2 handy, hit the coffee first thing in the morning and keep cafergot handy in case it reves up above a 7. For someone who's not chronic, this may seem a "weird" way to live, but it keeps me sane and out of pain most of the time. You just have to adjust to whatever works for you. But don't ever let these things get you down - or they win. Hugs BD
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What don't kill ya, Makes ya stonger!
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phil_h
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Re: The rest of you Chronics
« Reply #7 on: Oct 18th, 2007, 10:13am » |
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Thank you all... I've tried the chronics cocktail with only negative results........ I've been on most things 1-2 x's.... Somethings 3-4x's ... Verapamil never helped in any drug combo for me .... in fact it was part of a fatal drug od for me.......... Verapamil is out for me for good...... My dx is chronic clusters { unremitting from onset ?} {something else that means I am a poor responder to most rx's ? } HBW seeds worked pretty good for awhile {4-6 months , then stopped} I clearly went off an previously known pain scale personally experienced by me last nov............. I had over 20 10's in 13 days...................... AT any rate my neuro returned my call today and I've got an appt. this evening...........by itself this return call is great... I'm hopeful we can find something to help............. Thanks, I'll report back......................... phil h
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sldrswyfe
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Re: The rest of you Chronics
« Reply #8 on: Oct 18th, 2007, 8:00pm » |
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Yes...Im going through what I call "a cycle within a cycle"...I just got off of oxygen about two mins ago... This has been going on since the beginning. At times, they pick up in number and intensity... It's really good to talk with other chronics. Thanks for posting this thread.
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"Great spirits have always found violent opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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phil_h
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Re: The rest of you Chronics
« Reply #9 on: Oct 18th, 2007, 9:41pm » |
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sldrswyfe , Some f---ing ride ! Neuro cancelled on me ....something about a patient critical in hospital........ ok I'll hold on to my problem............appt. in 3 weeks.....it will be what it will be..... my heart and head go out to you..... I pray for pfnad's for us all..........hell just give me one or two phil h
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kyitb
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Re: The rest of you Chronics
« Reply #10 on: Oct 19th, 2007, 12:38am » |
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Geez Phil. Sorry to hear about the increase in pain. I had a killer the past 2 nights when we had storms. Wasn't pleasant. OTher than those 2 majors not much of change since the onset of fall. I tend to get real bad in the winter and summer for some reason. Hope you wake up to better day my friend.
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Tara Ann
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Re: The rest of you Chronics
« Reply #11 on: Oct 19th, 2007, 3:11am » |
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Guess I'm not the only one. My clusters have been out of control going on 2 months now.
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phil_h
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Re: The rest of you Chronics
« Reply #12 on: Oct 19th, 2007, 8:13am » |
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Only one -7 this morning. I woke up feeling pressure.....oh yeh, sure here comes thunder and rain this day....... The human barometer is readind 29.71 and falling..... for along time I thought this cycle in a constant cycle was in my mind..................... no I looked over 4 years of calendar and there it is..... sept. rising--peaking nov.&dec. -- then coming down to a normal chronic phase march....... 6 harder months of the year of which the the worst is...... NOVEMBER........ the #'s seem alittle higher each year....... oh,well here we go............. kevin , sorry you had a couple of worse days ............. Today I will light a candle for all of us and stop cursing the darkness............Sometimes worse comes before better...........pf wishes for all.............. phil h
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sldrswyfe
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Re: The rest of you Chronics
« Reply #13 on: Oct 19th, 2007, 9:37am » |
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Im so sorry Phil...Im right there with you. Woke up four times last nite...getting hit hard... And this morining, first thing...the weather is dark, rainy here. I am definately in an intense cyle...everything is picking up in number and intensity. I hate this. I do know what you mean. This is when you do the "cocktails" , prednisone tapers, etc...if you're lucky enough that they are effective. Me, I have to put on my seat belt and hang on. Hope something works for you. Sincerely, Sherri
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"Great spirits have always found violent opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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midwestbeth
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Re: The rest of you Chronics
« Reply #14 on: Oct 19th, 2007, 3:44pm » |
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I can relate to the low cycle / high cycle. I'm in high cycle right now and fighting it with everything I've got. Still learning and will never give up fighting.......... PF wishes to you Beth
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Do more than exist - live Do more than touch - feel Do more than look - observe Do more than read - absorb Do more than hear - listen Do more than listen - understand ~ John Rhodes
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Ray
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Re: The rest of you Chronics
« Reply #15 on: Oct 19th, 2007, 5:12pm » |
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Phil and everyone: I'm definately aware of the cyclical nature of the beast within chronics. I was in the "high" cycle and did the DHE infusion. It has not prevented the hits, but it's knocked down the number and intensity of them. It's an unpleasant treatment (try to get the anti emetic in you via something other than a vein) I used phenergan by IV and it ripped my veins up. The DHE push was nothing after that. If you're getting where it's tough to stand it, it's worth talking to the DOC about it. Good luck to you, don't let the beast win. Treasure every pain free minute, rather than dread the next hit. Been there, done that, got the T-shirt, and threw it away. Have your tools handy and remember you'll make it. I'm praying for you buddy! Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum *While we have the time, let us do good*
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phil_h
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Re: The rest of you Chronics
« Reply #16 on: Oct 20th, 2007, 3:53am » |
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Is there a limit to how much red bull one can use in a 24 hr period ? Just kidding , I can switch back to mass quantities of coffee. Icepacks,coffee,redbull,O2,prednisone,trazadone to sleep,wellbutrin and lidocaine......cold shower and hot bath............. 3hits this AM K7,8,7.............it's 3:45 and I'd love to go for a ride to the beach, but I'll wait til 5 or 6am, when my normal am window ends........ the early am hits always seem and are more isolated.....pain subsides.....darkness remains...eye swollen, body sore,shadows remain, can't go back to sleep......comeon sun rise................
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Tara Ann
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Re: The rest of you Chronics
« Reply #17 on: Oct 20th, 2007, 4:41am » |
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Right there with ya, hang in there and so shall I
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sldrswyfe
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Re: The rest of you Chronics
« Reply #18 on: Oct 20th, 2007, 12:39pm » |
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... Phil. Im glad you're going to go to the beach...I pray you enjoy every second. Much Love, Sherri Thank you again, for the "chronic" thread.
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"Great spirits have always found violent opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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snyder
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Re: The rest of you Chronics
« Reply #19 on: Oct 20th, 2007, 5:16pm » |
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I am also chronic and remembered last week I wasn't paying attention to my calcium/magnesium balance. For me, this makes a difference in the pain level, frequency of attacks, and how well the O2 works. When I took a good look I discovered that my calcium intake was too high. This is bad for me when I am having bad attacks ... I was having as many as 12 a day and most were K7 or K8. When I cut back the calcium drastically the number of attacks were reduced by about two thirds and the O2 works faster. Now too, I can stop an attack with the O2 usually before it reaches K4. This works for me, I have no idea if it would work for anyone else.
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purpleydog
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Re: The rest of you Chronics
« Reply #20 on: Oct 20th, 2007, 8:32pm » |
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I also get "cycles within a cycle". I am another that most drugs don't work on, or are intolerable for me to take. I've been watching, but I have not noticed any particular time they come. They just show up. Last time, they switched sides, now on my right, and the pain is somehow much worse. They will come on for about 2 weeks, then taper off for a week or so. Then they will show up again. The thing is, I don't know what triggers me. I just started another round, trex and O2. I have pred to take if it gets too bad, and I have decided not to use it unless I absolutely can't stand it anymore, because I've been using it a lot since April. It does kill the CH on the first day though. However, I need to think about the side effects of it. Otherwise, I usually have two hits a day, and they aren't that bad, not compared to these "cycles" I've been having. I deal with them with O2, or a split shot of trex. Good luck, Phil. And live your life between the hits.
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phil_h
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Re: The rest of you Chronics
« Reply #21 on: Oct 20th, 2007, 8:42pm » |
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I guess the thing about being chronic is......you know you hit each day , just don't know how bad......I must remember to not drive home without a good supply of amps and red bulls........... Keep O2 tanks full........... I pray for us all to have low frequencys and lower kips........... phil h
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kyitb
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Re: The rest of you Chronics
« Reply #22 on: Oct 20th, 2007, 11:45pm » |
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Apparently I don't know my cycles anymore. Just when you think you know your CH and you got it under control. 2 nights of hell creep up on you and you feel like it's all just too much too deal with. It never is but, in the middle of some attacks it seems so dark. I found myself trying to reason with the beast last night. Crying out it's too long it hurts too bad. The beast never seems to care. I can't reiterate enough how blessed I am to find a home here. I wish you all pfdan, we surely deserve them.
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sldrswyfe
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Re: The rest of you Chronics
« Reply #23 on: Oct 21st, 2007, 5:20am » |
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Yeah...that "driving" thing can be a bitch when you can't keep your eye open on top of the knives embedded in your head and eye...add some panic...and woohoo..what a ride!! I love you all...and pray for all of us. Much Love, Sherri Snyder...that blinking eyeball is killing me!! and "k"...calcium helps? Can't hurt...I've love to hear more about your method....oops...I meant "snyder" re calcium/magnesium...sorry
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« Last Edit: Oct 21st, 2007, 5:26am by sldrswyfe » |
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"Great spirits have always found violent opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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sldrswyfe
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Re: The rest of you Chronics
« Reply #24 on: Oct 21st, 2007, 6:47am » |
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kyitb.... . Aaah...reasoning with the unseen monster...unbelievable, it really is. We all do it.
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"Great spirits have always found violent opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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