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Title: The rest of you Chronics Post by phil_h on Oct 17th, 2007, 9:32pm 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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Title: Re: The rest of you Chronics Post by E-Double on Oct 17th, 2007, 9:48pm hang in there brother! It could be a high cycle within. It sucks when things change and are unfamiliar |
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Title: Re: The rest of you Chronics Post by Jonny on Oct 17th, 2007, 9:51pm 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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Title: Re: The rest of you Chronics Post by Gator on Oct 17th, 2007, 11:20pm 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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Title: Re: The rest of you Chronics Post by sandie99 on Oct 18th, 2007, 3:49am Lots of PF wishes [smiley=hug.gif] Sanna |
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Title: Re: The rest of you Chronics Post by rolo65 on Oct 18th, 2007, 5:05am on 10/17/07 at 23:20:59, Gator wrote:
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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Title: Re: The rest of you Chronics Post by BarbaraD on Oct 18th, 2007, 7:48am 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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Title: Re: The rest of you Chronics Post by phil_h on Oct 18th, 2007, 10:13am 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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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 18th, 2007, 8:00pm 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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Title: Re: The rest of you Chronics Post by phil_h on Oct 18th, 2007, 9:41pm 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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Title: Re: The rest of you Chronics Post by kyitb on Oct 19th, 2007, 12:38am 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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Title: Re: The rest of you Chronics Post by Tara Ann on Oct 19th, 2007, 3:11am Guess I'm not the only one. My clusters have been out of control going on 2 months now. |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 19th, 2007, 8:13am 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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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 19th, 2007, 9:37am 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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Title: Re: The rest of you Chronics Post by midwestbeth on Oct 19th, 2007, 3:44pm 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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Title: Re: The rest of you Chronics Post by Ray on Oct 19th, 2007, 5:12pm 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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Title: Re: The rest of you Chronics Post by phil_h on Oct 20th, 2007, 3:53am 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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Title: Re: The rest of you Chronics Post by Tara Ann on Oct 20th, 2007, 4:41am Right there with ya, hang in there and so shall I |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 20th, 2007, 12:39pm :'( :'( :'(... 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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Title: Re: The rest of you Chronics Post by snyder on Oct 20th, 2007, 5:16pm 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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Title: Re: The rest of you Chronics Post by purpleydog on Oct 20th, 2007, 8:32pm 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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Title: Re: The rest of you Chronics Post by phil_h on Oct 20th, 2007, 8:42pm 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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Title: Re: The rest of you Chronics Post by kyitb on Oct 20th, 2007, 11:45pm 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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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 21st, 2007, 5:20am 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!! ;;D ;;D ;;D I love you all...and pray for all of us. Much Love, Sherri Snyder...that blinking eyeball is killing me!! ;;D 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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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 21st, 2007, 6:47am kyitb.... :'(. [smiley=hug.gif] Aaah...reasoning with the unseen monster...unbelievable, it really is. We all do it. |
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Title: Re: The rest of you Chronics Post by Jill on Oct 21st, 2007, 7:02am Hi all... It is nice to have a thread here that pertains to chronics, reminds me that I am not alone in this daily battle. I need that reminder on the long days... I also have the ''cycles within cycles.'' I have noticed that fall and spring seem to always bring them about but they can also come in the times in between. Those weeks that turn particularly bad with too many hits a day to count always throw me off because I never know when it is going to come. The thing with me is that I never get clusters on the lower end of the scale - mine are always at least an eight and many of them (too many to even count) are tens. Maybe I dont deal with them as well, I dont know. :-/ And maybe it is because I dont have an abortive that works or a preventative to knock them down some. I have begun to notice hearing more people say that they are medication resistant, I always thought that was just me. I, too, cannot find a preventative or an abortive to work. That is the most frusterating thing because I want it so badly - CH is hard to deal with alone but added not having anything that works makes it worse in a way. I am rambling now, sorry about that. Phil, you are right. Being chronic, you do know that you are going to be in pain so that part is not a surprise and yet I am always surprised when the beast hits especially hard or many times in a day. I guess that some days I hope that he wont, stupid I think. It is hard thing not to beg for the beast to give you a break and hard to go to bed at night knowing that he is going to strike and to keep fighting day in and day out. But what other choice have we got? And I always thought that I would give anything for one day pain free but then wouldn't I want more? Guess that I wont know... Thank you for starting this thread. Maybe one day we will all find something that works or maybe one day the beast will leave us alone for good. Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 21st, 2007, 8:10am OUCH... my eye is twitching from this mornings battles.. Just finished my 4th coffee..... it's 65 degrees out.. going up to 71 today.... I'm going to take my dogs swimming in the ocean, while there I will attempt to drown or scare off the beast by swimming .... The water temp has dropped..... more like a cold shower..... the salt water really seems to sooth my head. Hopefully it can stop this twitch..... sometimes it feels like the beast left a talon in my eyeball.................. I pray we all have a better day as the cycles continue to turn...... Oh yeh .... my hear is ringing a high pitched sound this morning....my tintenitis pitch often an alarm..........lets embrace life, rather than the pain and terror today........ phil h :-/ |
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Title: Re: The rest of you Chronics Post by Jill on Oct 21st, 2007, 8:17am Morning Phil... I am sorry that you are having a rough day. [smiley=hug.gif] I hope that swimming in the ocean will help. I think that sometimes when we do things that we love than it helps us deal with it better. Maybe that, in itself, will scare off the beast. I feel your pain - I am having a rough day myself. I hope that your head slows down soon. Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 21st, 2007, 8:37am Jil, Thanks...I hope your day improves...... I make gratitude lists all the time to stay positive and grateful ; but action therapy works best for me .... maybe I'll drown your beast to while I'm there .PEACE phil h ;;D |
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Title: Re: The rest of you Chronics Post by snyder on Oct 21st, 2007, 12:20pm In response to the question from sldrswyfe: I learned, for me, a few years ago that if my calcium level was TOO HIGH and my magnesium level was TOO LOW my attacks were much, MUCH, worse! I have to be sure that I am not taking in any calcium rich foods, nor taking a calcium supplement, during my cluster. If I should my headache pain is much more intense, each attack is much more difficult to stop with O2, and the number of attacks each day is much higher. Cutting back on the calcium alone can make a significant difference, for me, within 24 hours. The cycle isn't stopped but it is made much more livable. I'm glad you like my blinking eye. It really expresses how I feel about living with CH most of the time. It's like I am trying to see my way through this out to reality. |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 21st, 2007, 2:24pm I thank you snyder for being so kind to answer my question. Interesting. I am going to pay attention. I eat "atkins" style...lots of meat and vegetables...very, very low carb. And any carbs are whole grain. THAT helped me alot with CH. No sugar...or processed meats. When I say meat, I mean, beef, chicken, pork...not salami, hot dogs, etc. That increases CH's for me. I have a big weakness for cheeses though. :-[ Not good...but can't seem to give it up. Thankyou again. That eyeball struck me as funny this morning, thanks for the smile. |
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Title: Re: The rest of you Chronics Post by snyder on Oct 21st, 2007, 3:15pm I hear what you say, sldrswyfe, about the salami and hot dogs, etc. I can't eat any of the processed meats during my run with the headaches. I guess it's the nitrates, or the nitrites, in those mystery meats that sends me spinning. I have so many things I cannot consume and then the triggers that are unique to each cycle that are never the same from one cycle to the next. And, they aren't the same from one of us to the other. Sometimes triggers change for me during a sycle, too. My doctor agrees about the calcium thing though - she says that is pretty consistent for many CH people according to research she has seen. I don't know if she is talking through her hat or not - never seen her with a hat on come to think of it. |
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Title: Re: The rest of you Chronics Post by Miz_D on Oct 22nd, 2007, 6:14am Hi Phil_h, Yep, definitely high cycles for chronics, thanks for startin this thread...I think this is exactly what's been happening to me for the last 3 and a half weeks. Anyhow, I'm trying the topomax with verap because lithium hasn't traditionally worked for me but hey, if I need to, I will certainly go there! Anyhow, from one chronic to another, hang in there, we are all with you in our thoughts and hearts. |
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Title: Re: The rest of you Chronics Post by black on Oct 22nd, 2007, 2:55pm what do u mean with the term high cycle??in kip?duration? |
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Title: Re: The rest of you Chronics Post by Wayne on Oct 22nd, 2007, 4:23pm Geez, I just read this thread for the first time and I am truly humbled. Here I am feeling a bit sorry for myself that my cycle seems to be lasting so long but I have a prevent that works miracles and an abortive that kills anything that may sneak through, I'm so lucky. I cannot imagine what you guys are going through and my heart really goes out to you all. Best of luck to you folk. |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 22nd, 2007, 5:45pm BLACK, high cycle is when I'm getting more hits daily than usual, KIP= is the pain scale , I'm getting more painful hits and duration is the length of time the hit lasts-- right now everything is lasting 45-60 minutes.... I'm using O2 which aborts 1/2 of the hits in 10 minutes or so................ SNYDER , SLDRSWYFE and WAYNE, I went back on an 80 mg prednisone taper today....you know the deal shakey inside and out... Usually takes a couple of days to work............. Anyway I was thinking , us chronics are kind of lucky ; no matter how bad I get hit , there's lots of us surviving the same and alot of you guys surviving worse................ I pray for all of us...........we each have our own beast and our pain is just that , our pain......... The beast I have known will blow itself out eventually............ Episodic , chronic there just different seats in hell..... Believe it or not I feel good RIGHT NOW WOW Peace phil h ;) ;) |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 23rd, 2007, 11:48am Phil, I don't what the hell happened...I responded yesterday...well..there's a msg somewhere meant for this thread... Anyway...this thread has been has been awesome. It was great to read the accounts of other chronics...it really hit home, and let me know there are others that experience all of this strange stuff I do as a way of life. To "the rest of you chronics"...be well my comrades. Do the best you can today...it is really good enough. Much Love and prayers....Sherri |
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Title: Re: The rest of you Chronics Post by sandie99 on Oct 23rd, 2007, 12:21pm on 10/23/07 at 11:48:12, sldrswyfe wrote:
Sherri, that's a great advice to all of us. :) My mum used to say "do your best and leave the rest", but I just forgot to connect that with ch. Thank you. [smiley=hug.gif] Hugs, Sanna |
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Title: Re: The rest of you Chronics Post by Kevin_M on Oct 23rd, 2007, 5:40pm on 10/21/07 at 07:02:42, Jill wrote:
There are more active times during the year for me too, when they seem totally resistant to the regular preventive regimen. But before having used a preventative, all hits went to the top of the scale. Now though, even with the prevent ineffective to stop them at times, it seems to hold the intensity down a Kip or two. Something safe may not adequately suppress the frequency of hits but if without an abortive, could have a benefit of less intensity. Stay looking, Jill. :) Hoping best for everyone on this thread. Thanks Phil, I vary, too. |
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Title: Re: The rest of you Chronics Post by kyitb on Oct 23rd, 2007, 6:55pm Sleep. Precious sleep. Back with a vengence is the beast. Fucking fall! Jill - I totally agree with you on only getting Kip 8 - 10's I posted that thought on a different thread. I recognize that all pain is different but, my tolerance for pain had always been high. I'd venture to say extremely high. From abuse as a child to rugby in college. I've always thrived on contact and pain in some form of another. I've never had an easy time with an attack i've always had to pace or rock, it always hurts. Lately i've been wondering if this is even a pain that can be quanitfied. My attacks don't last all day but, I hurt all day. I probably could sleep more but, i'm afraid to go to sleep alot of time. I think it's more of a mental game than anything else. This is not an attack trying to diminish mine or anyones elses pain. For myself i'm starting to notice that I just don't have the fight in me and I sorta give in to the pain. Perhaps that's why I never get a 5 or even a 7. I have no tools to prepare myself mentally or emotionally for an attack. That's a whole different type of pain. Just a thought. A sparatic one. Too tired to proofread hope I made some sort of sense. |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 23rd, 2007, 7:58pm Yes... It's always to the "top"....I don't even know what it means to have a kip 2. It's about right saying an 8-10. This is pain from "another world" is the way I classify it. Im pretty tough when it comes to "hurting". That is why this never, never ceases to amaze me....after fourteen yrs...Im still shaken up aftwards. Im getting my butt kicked. As if Im a rag doll being thrown violently by something I cannot see.... I too hope Im making some type of sense...sooo tired. PF wishes.... |
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Title: Re: The rest of you Chronics Post by Jill on Oct 24th, 2007, 3:03am Hi guys... Wow! I am glad that I am not the only one thats hits top the scales. At first, I too, thought that I had a low pain threshold but when I slammed my finger in a car door and it was stuck because the door was locked... well... that didn't bother me at all. I have learned, over time, that I can deal with pain but not clusters. I also hurt all the time, sometimes it is shadows (many times) and sometimes it is soreness from the bad attacks. I guess that it would be different if I were like others who have lower KIP attacks but mine are just too bad. Sleep is a whole other story - lack of sleep makes it a different ball game all together. I am sorry, I am rambling now. This pain is definetly in another world - that pretty much sums it up for me. Good words Sherry. I have given up the idea that I will find a preventative to work or a good abortive. I hate that part, it is draining to not have anything and then wonder what is wrong with you... hard to explain. ::) Once again, I am rambling. Sorry. I am glad that this thread was started and that I am not the only one that sufferers like I do. Thank you. Bless all of you all... Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 24th, 2007, 5:37am I like hearing that others feel pain most of the time..Not glad you have this pain.I think the horrible pain of 8,9 and 10's are followed by long periods of time where I feel like I've been hit by a truck. So when the hits end , a less focosed full body pain follows..Now that continues the "why me ?". Only my newest neuro seems empathetic to the " aftershock pain ", his words not mine. OK I feel your pains and my heart is yours; but I'm really glad to discovery this isn't just me. phil h |
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Title: Re: The rest of you Chronics Post by BarbaraD on Oct 24th, 2007, 8:01am I'm hearing from you're all coming from and I've been there (for too damn long) but... there is SOMETHING that will help YOU... it's just a matter of finding it. The secret here is is NOT TO GIVE UP. You just have to keep trying cocktails until you hit on the RIGHT one for you. I went chronic in 97 and for two LONG years NOTHING worked - I think I went thru EVERY drug on the market and even surgery and NOTHING worked. And then one day on this MB, Joe Stone (I don't think he's posted in years), posted that he was in a topamax trial study in Denver. I'd never heard of topamax and called my neuro immediately. He said he'd just read something on it and was going to call me - did I want to try it (I won't repeat what I said about that little remark). He called it in and it became my MIRACLE drug! Almost immediately my headaches stopped (or pretty much stopped to the point I became human again). So what I'm getting at is there is SOMETHING out there that WILL work - it's just a matter of FINDING it. In the meantime - take the PF time you can find and keep looking. It's a crap shoot to find what works for YOU. We're all different (where have we heard that one?) and we react different to different meds. And just because something didn't work the first time doesn't mean it's not going to work the next time. Heck, I tried melatonin three times before it worked, but now it works great at night (finally figured out you gotta take it a couple of weeks BEFORE it STARTS working right). And it takes at least 75mg of topamax to do any good and you gotta take it at night to eliminate the side effects (if you take it in the daytime it's gonna make you dopey as hell). If you have low blood pressure to begin with Verap will do a number on you (I couldn't get out of a chair on 80mg of verap - didn't work real well on me). And predisone is great as a taper to let the other prevents get working, but over a long period is bad for you. Lithium is great for some people (works for a lot of people here), but keep an eye on your blood level with it. Trex and Cafergot (ergotomine) are about the only aborts any of us use (DHE in major cases to end cycles), but can be dangerous if used wrong or too often (but when we're hurting we don't worry about things like our hearts do we?). We all develop a HIGH pain threshole with these headaches (I can remember when I went to bed with a hangnail - that was a LONG time ago.) We have this MB for support and help. We're not alone. What I'm trying to say is -- oh hell, I don't really know what I'm trying to say except -- just keep looking for the magic cocktail - it's there somewhere - I know what it's like to think there's nothing that's ever gonna help, but something is there that will. I found topamax and you will find your cocktail - it's there - just keep looking and you'll find it. Hugs BD |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 24th, 2007, 9:32am Barb, Thankyou...I need to hear those things too. I don't have to tell you, now tiring, discouraging, etc. it gets. I have run the med. gamut, and am also what they call "med resistant", had had chronic pain procedures...etc. I've exhausted all "traditional" treatments. What struck me from your post, is "that some meds that didn't work before, may work at some point"....it's truly of matter of not giving up. Thanks Barb. |
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Title: Re: The rest of you Chronics Post by Jill on Oct 25th, 2007, 6:46am Thank you Barb, Your words of encouragement to keep going are very valuable. Sometimes we need that gentle reminder... I am also med resistant, both to preventatives and abortives. I have tried all of the traditional therapies and even some new medications that are just now being used for clusters but nothing seems to work. I have all but given up hope of finding something that works and that is hard to deal with. I think that maybe taking a break from medications will be good, maybe something will work later. I worry more about what trying all of these medications are doing to my body... that is scary. I wish for everyone to be 'cured' of clusters and that the beast never finds you again. I really hate CH, as I am sure that we all do.. Thank you for the reminder that we all must continue, take it a day at a time and that no one is alone in this. Thank you. Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 25th, 2007, 8:15am The journey continues....off to see the neuro today. I've missed a couple of days of work this week....bad times. I saw my PC DOC yesterday....He told me he felt sorry for me . He doesn't know why I continue to try and work or how I'm able to work at all. Not the kind of reassurance I was looking for. I only went to see him because he's across the street from my office and will always see me if I just walk in..... I just wanted to know, should I go to the ER again or not... He said it was pointless and if I asked him for a shot he would give it to me.. That made me feel better because the ER would give me O2 and a pain killer . Now that I've read the previuos few posts , I'll know what to ask for next time.."The shot of invisability " . I have notes and articles to review with neuro today... I won't give up and we will review all rxs that have failed only 1 or 2 x's,plus notes on 4 drugs I've never been on..I feel encouraged by you guys and at least have an optimistic game plan for today.... Thank you guys....straight ahead and openminded {however damaged and minimized that may be }. I'm off to see the wizard. I pray for pfdan's for you all. phil h ;) |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 25th, 2007, 9:37am I am very sorry you are getting "smacked around" by something that seems to dodge all your swings.... I like the "shot of invisability"...it did make me laugh. Hang on Phil....you're doing the best you can, you're being pro active...and for that...you should be proud. |
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Title: Re: The rest of you Chronics Post by black on Oct 25th, 2007, 2:56pm Quote:
different to what?imigran?o2?heat or cold packs?.the only difference is that our cycles occur in different time through year for some reason.dont we have the same symptoms?others from episodic turn to chronic,vise versa and cases that stay permanent from the beggining(at least till now.).i refuse that there is no same cause for all of us when we seem to be so similar.i yearn for the day that there will be a medicine with small letters on its side anti-cluster (wouldnt that be great?)and suits for EVERYONE.for the time being yes u are right that the only thing we can do is drink these marvelous cocktails and hope at least to turn to episodic(personally i do it for the only reason just to say myself i do what i can.but action doesnt always mean result).this matter about how different or similar we are can be a new topic with a looooooot of discussion.i dont want to be sounded firm(strict is more appropriate?) believer but if we are really different there shouldnt even be a condition named clusterheadache but better 6000+ blind people looking for a black cat who happens to be next room condition ;;D.dont take all these as an attack but i feel that if what u say is true everyone and each of us is alone in this(ok thats my fear).sorry for all of these everyone.i had an 8 one hour ago and maybe i am lookin something to hold on.i m tired sick of it and angry.we pay these s*&t and they sell us hope. |
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Title: Re: The rest of you Chronics Post by Wayne on Oct 25th, 2007, 4:44pm Hey Phil - best of luck for today, somewhere is your silver bullet, keep looking, you'll find it. PFDAN mate Wayne |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 25th, 2007, 7:06pm Well I'm back from Oz. The wizard put me on Lamictal and gave me lots of samples of frova and maxalt to try out . He upped my prednisone to 40mgs.....this is added to my wellbutrin,trazadone ,O2,icepacks and cold showers....... It helped to have a kip 10 in the waiting room..... You know they don't have O2 in the neuro's office . I got a lot of attention and sympathy from the staff . The wizard watched me , then told me he had never seem this bad ,close up . One of my great fears had been having a severe hit in a public place and having no where to run . Not to bad .... they did ice me down.... I freaked out a couple of seniors in the waiting room . They had never seen primal screen therapy at work. I'll keep you posted. Thanks for the support. I must go dark for awhile . phil h |
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Title: Re: The rest of you Chronics Post by Jill on Oct 26th, 2007, 3:10am on 10/25/07 at 14:56:35, black wrote:
Hi there Black... What we mean when we say that we are all different is that we all react differently to medications and all have different things that work for us. Some preventatives and abortives work for some while not working for others and some, like me and Sherry and others, are med resistant. You right, we do all have the same condition but some of us are chronics and some episodics, some of us get hit on the right and some on the left.... I find it interesting that there are so many differences among us like age, level of attacks and so forth... But, we are all in this together because no matter how different we are, the pain is the same. It is horrible and we all hate it. In that we are a united front and that is what keeps, at least me, sane - knowing that I am not alone. Hope that helps some and made some sense. Phil - I am so sorry that you got it hit in the waiting room and so hard but I am glad that the staff was helpful. That probably gave the doctor a wake-up call. I hope that the new meds work for you. Stay well. Jill |
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Title: Re: The rest of you Chronics Post by Wayne on Oct 26th, 2007, 3:43am Really holding for you Phil!! :) |
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Title: Re: The rest of you Chronics Post by Jill on Oct 26th, 2007, 6:59pm I really don't have anything to say but I really really really really hate clusters and I really really really really hate being chronic. Don't we deserve to get a break at some point? Even if only a little one.... Please. Sorry, had to write that to people that understood. Just having a very bad night here.... Man I HATE clusters more than words can ever say. Thanks for listening. Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 26th, 2007, 7:57pm Jill, I'm sorry you're having a bad night...... CH's plain suck..... It's rainning here and the day and evening has been tough. I guess together we fight and together we suffer . I'm glad to be able to visit this site and no longer isolate in my pain..... I am praying for you and wish you pfdan's . If that's not in the cards then I hope you at least experience pain reduction and long breaks between hits....... [smiley=hug.gif] [smiley=hug.gif] phil |
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Title: Re: The rest of you Chronics Post by kyitb on Oct 26th, 2007, 9:14pm I hear ya with the breaks .... I need one desperately. I often wonder what would be worse though ... At least I know everyday i'm in for a struggle. Helps me adapt a little better. I couldn't imagine having months off only to experience them all over again. The experience of that initial attack for an episodic must be terrible. Tomorrow is my appt. with the disabilty doctors. Wish me luck! I in turn wish you all PFDAN'S. Hang in there everybody someday doctor's will figure all this out and ch's will be a distant memory. I gotta believe that ... |
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Title: Re: The rest of you Chronics Post by Jill on Oct 26th, 2007, 9:50pm Good luck tomorrow with your appointment, I hope that it goes well. I know what you mean about having the break - I am not sure what I would do with a pain free day because I know that I would not be satisfied with just one. It is a distant memory what life was like before CH and I guess that that might be a good thing. I can't focus too much on what I am missing if I can't remember. :-/ The part that I absolutely hate about being chronic is that I know that they are coming tomorrow and the day after and the day after that and so on. I can't count down how many weeks or days I have until they disappear for awhile. I hate dreading the tomorrows because I fear that it will be as bad as the todays. Does that make sense? I guess right now I am just getting slammed and it is making me feel down. I try not to ask for much, I mean I am not asking for them to disappear completely because I don't believe that will happen. But I do ask that I get more than an hour between hits and that the hits weren't so damn strong right now. Is that a lot? Is that selfish? Sigh. Thanks for listening. I am ramping up again, have to go dance another dance. CH sucks. Jill |
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Title: Re: The rest of you Chronics Post by kyitb on Oct 26th, 2007, 10:35pm Jill, I hear ya! I have no idea what it's like to have a "clear" head anymore. I always feel on edge and frustrated. Take the little bit of pain free time we do have and make the most of it. I wish I could do the same. It's hard. We have to make the most of it! These things are yet to kill me or you, find strength in that. Collectively, we have got to be some of the strongest people on the planet. Own that! Think that! Feel that! There's got to be reason we endure so much pain. |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 28th, 2007, 5:45am .. Jill and Kevin , JILL, I'M RIGHT THERE WITH YOU, CAN YOU GUIDE US TO SMOOTHER WATERS ? IF NOT, WE MUST RESET OUR SAILS--OVER AND OVER ........KEVIN, I HOPE THE APPOINTMENT WITH THE DISABILITY DOCTOR WENT WELL........I PRAY FOR PFDAN'S FOR YOU 2 , OR AT LEAST A BREAK . I WILL HEAD TO THE PARK TO WATCH THE DEER THIS AM. HELL I'M ALREADY UP . phil h :'( :( >:( ::) |
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Title: Re: The rest of you Chronics Post by Jill on Oct 28th, 2007, 6:09am Morning Phil... Thank you for your kind words. I hate that any of us has CH but, if we must, at least we can deal with it together. You are right, we have to reset our sails and we have to keep finding ways to deal until we can get to that smoother water. We cannot give up, we have to keep sailing as hard as that may be. I hope that you enjoy the park and that it brings you some peace. I think that doing things like that are important and that is what helps us keep our sanity, for me anyways. I have found that being in nature whether I am standing in a big open field, looking out at the ocean or watching the stars in the night sky that that helps me to remember that I am just a part of something great. There is something peaceful and calming about knowing that there is something bigger than you out there and knowing that you are not alone in the world. That sounds mushy, huh? Whatever helps though. I really hope that you have a good day today and that the beast slows down for you. For all chronics, I wish the best and I am thinking about you. Jill |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 28th, 2007, 6:45pm Jill and fellow CH's , I had a great sunrise in the park this AM . I lost sight of pain and enjoyed natures miracles for a few hours before the beast drove me home for O2. Not too bad.... Wishing pfdan's for all... phil h |
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Title: Re: The rest of you Chronics Post by kyitb on Oct 28th, 2007, 8:00pm Hope everyone is well. I had an interesting night last night. I went out with the girl I was dating when I 1st started having these. Interesting conversations at the beginning of it all. Didn't know what was wrong with me. Back then I refused to go see a doctor and just hid. It dawned on me how far we've all come through all these attacks. It's true that what doesn't kill you makes you stronger and it is also true that there is strength in numbers. Thank you all. Let's all make the good times better ... |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 30th, 2007, 9:25pm Absolutely...staying positive...so vital. Hope...vital too. It's gets difficult to see the light when you're in it...but easier when you can breathe again. Hope all is well for everyone. |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 30th, 2007, 9:32pm Glad you're back on Sherri . Barametric pressure over 30 again . Minimizing # of k10's , who wouldn't want to be me . [smiley=nopity.gif] [smiley=nopity.gif] [smiley=JAW_DROP.gif] [smiley=nopity.gif] [smiley=nopity.gif] Hopefully your beast is calming down some .... phil h |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Oct 31st, 2007, 8:23am Guess that's good news though?? Very funny Phil!! (the violins) |
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Title: Re: The rest of you Chronics Post by aloneuk on Oct 31st, 2007, 9:59am weather is getting colder and im getting hammered :'( been in high cycle ( cycle within chronic cycle) a few weeks now but the last two days its really stepped up a gear... but hey together we will all make it out the other end ! |
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Title: Re: The rest of you Chronics Post by phil_h on Oct 31st, 2007, 11:11am IKE , Sorry you're in high gear also . AMPING UP / RAMPING UP is a nightmare within the nightmare . Wishing you pfnad's or reduced pain. phil h |
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Title: Re: The rest of you Chronics Post by NJRik on Oct 31st, 2007, 12:02pm Phil, sorry it's so bad for you right now, I know driving is a bitch if there is anything I can pick up for you just shout. As for Maxalt is does not seem to work for me but I'm new to this so what do I know. |
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Title: Re: The rest of you Chronics Post by phil_h on Nov 1st, 2007, 9:16am Thanks Rick , I will call you if I'm stuck . You are right about maxalt . I tried it 6x's and no positive results . Even took it before a hit that 15 minutes later was a k6 ; didn't help . I didn't try O2 so I could evaluate it fairly. NOTHING , a k6 that lasted 40 minutes . I'll give you a call to get together in a few days ; I think my cycle may be calming down .... I hope...... I hope you're holding up well ? phil h 8) |
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Title: Re: The rest of you Chronics Post by imacane on Nov 1st, 2007, 11:00am I was chronic for 14 years... I must emphasize WAS. None of the "cocktails", nor a list of meds to long to mention prevented or aborted the headaches with the exception of Prednizone, trex and oxygen. We all know that these three are temporary fixes at best and with the exception of the O2, come with their ability to create other serious problems. That said I am almost 8 months cluster free. There is a treatment explained on the www.clusterbusters.com site, though unconventional works. On the site you can read the research study regarding the treament conducted by Harvard's Dr. John Halpern. Success in over 83% of chronic and episodic sufferers. Good luck |
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Title: Re: The rest of you Chronics Post by sldrswyfe on Nov 1st, 2007, 3:50pm Phil, Sorry to hear about the med situation....actually Maxalt sub-lingual tabs helped me....for about three weeks...then stopped I have recently begun using them again, but for the migraines it seems to be helping...except my last episode...it sort of helped...but not completely like the last couple times. At any rate, I hope you are well my friend. Sherri |
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