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Title: How do Chronics deal... Post by Versilleus on Aug 18th, 2004, 6:46am with attacks. Having them for almost 3 years now is too long. I have tried everything, except for the 'shroom which I'm giving some serious thought. What do you do to deal with 'Chronic Life'? Right now that light at the end of the tunnel is pretty dim. My neurologist can't really change much med-wise because they is nothing left to try. The combination I'm on has been the most successful. Some success. 3-10 attacks a day plus pain in between. Is there a bright spot in all of this? Whenever one cycle ends another starts. The hardest part for me is there is no recovery time like with normal injuries. eg. A finger gets cut off, the injury heals and then learn to adapt with 9 fingers. With clusters it is like a re-accurring injury with no end in sight. Sorry, I'm venting a little. I would like to know how chronics(especially with hemicrania continua) or non-chronics deal with life in general. Cheers Paul |
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Title: Re: How do Chronics deal... Post by don on Aug 18th, 2004, 10:39am So what have you tried? Neurologists are not always on the money. |
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Title: Re: How do Chronics deal... Post by Prense on Aug 18th, 2004, 10:52am Paul, Surviving CH means coping. At some point in time, you just adjust whatever it is you need to adjust and press on. Make the best of a bad situation... You will not cope in the same manner that anyone else will. It is something that evolves. Family, friends, life in general...those are the things that keep me going. Kip 3 is PF compared to a Kip 10! Chris |
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Title: Re: How do Chronics deal... Post by alleyoop on Aug 18th, 2004, 1:14pm Chris, Welcome! You say you and your neuro have tried everything. What is everything? What kind of prevents are you taking now and in what doses? What are you using to abort? Like Don said, neuros aren't always on the money. In fact, I'd say they miss it more often than not. Give us some specifics. Help us to help you! .................................................alley |
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Title: Re: How do Chronics deal... Post by Versilleus on Aug 19th, 2004, 3:14am Thanks for the quick replies everyone. Lets see this is what I have been on. Verapamil Triptans -Imitrex(injection, tab, nose-spray) -Maltrox -Amerge -Zomig Various hypnotics and sedatives(During this time the goal was to get me to sleep. But as you know, sleeping and clusters don't go in the same sentence) PHenobarbital Oxygen Depakote Dhe-45 Cafergot Localized injections of freezing(can't remember the name) and cortisone Tylenol Celebrex Demerol(narcotics were a last resort but have been a blessing) Percocet NSAIDs -ibuprofen -indomethancin -toradol -aspirin Elavil Remeron Luvox Effexor Trazodone Tegretol Current Meds: Neurontin 400mg Celexa 20mg Dilantin 300mg (I have seizures that started about a year after my first attack) Propranolol 80mg Duragesic 50 patch(fentanyl) The current cocktail has been the best thing so far. The current doses have been played with except for the patch. I am comfortable with them. I've been to pain clinics with no luck. I've been scanned, analyzed, prodded etc. And chronic clusters & hemicrania continua is the final diagnoses by the neuros. Now that they have completed there tests on me. They have basically said there is nothing they can do but to manage the pain. Which is still too high to a manageable life. And thats all I want. I have no expectations that it will go away, though it would be nice. I just want to figure out a way out a way I can put my life into the 1 day a week that I get that is manageable. I really have no idea about what to do about it anymore. I am finding it harder and harder to cope with each attack. I meditate, draw etc. Anything to avert my mind from it. |
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Title: Re: How do Chronics deal... Post by Superpain on Aug 19th, 2004, 3:50am That's alot of shit... I didn't see prednisone in there. Did you just forget it, or have you ever tried it? |
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Title: Re: How do Chronics deal... Post by synergy on Aug 19th, 2004, 4:06am Marc and me had two choices with the chronic CH - let it take over our entire life or fight back and make the most of what we have got. We made the right choice of making the most of it. Its not easy and there are days where marc doesnt want to fight it but then i have to remain strong and give him a kick up the ass every now and then! We recently got a book which was recommended by Prof Zach (who is a specialist in CH) about how to live with chronic pain - i havnt read the whole thing yet but what i have read marc has found very useful. Im sure you can get hold of the book in the US - its called "Manage Your Pain" by Dr Michael Nicholas and some other doctors. Some of the book is more aimed at chronic back pain but there is a lot of handy stuff in there. Luv sarah xx |
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Title: Re: How do Chronics deal... Post by Becky on Aug 19th, 2004, 8:43am Versillews, How you deal with being chronic is up to you. I found out that once I excepted the pain ( I've been chronic for over 6 years now,6-7a hits aday). Once you learn to stop fightting it, it is easier. It still sucks pond water, but easier. I go to work 3 days a week, that is where most of my energy goes. My kids are now older and understand alot better. But it is still hard on them. Hang in there and try not to fight it. Things will get better, there is always a light at the end of the tunnel. Hopefully its not a train. LOL Hugs Bec |
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Title: Re: How do Chronics deal... Post by Prense on Aug 19th, 2004, 8:45am Lithium, topamax... |
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Title: Re: How do Chronics deal... Post by Versilleus on Aug 21st, 2004, 2:08am Thanks everyone! I haven't tried prednisone for cluster. I was on it for an unrelated health issue. It ending up disolving my should joints , requirering me to get a pin and a butterfly clip put in it. I don't know how not to fight it. My first natural reaction to pain is push back. I learned through meditation how to minize my reaction. It's still hard through. I want to go back to work more than anything. I have tried so many times to go back. Most of the time I can go about my business. It's the confusion present with the clusters that stop me from working. I have no memory and very confused with them. I feel like such an idiot when I can't remember simple things like how to count for example. Thanks for the recommended reading. I'll check the libray tomorrow and order it in. The Mayo Clinic has a good book too. I like 'Pain:The 5th Vital Sign' by Marni Jackson. Cheers, Paul |
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Title: Re: How do Chronics deal... Post by ex_pat_asia on Aug 21st, 2004, 5:44am [quote author=Versilleus link=board=chspecific;num=1092825644;start=0#4 date=08/19/04 at 03:14:59]Thanks for the quick replies everyone. Lets see this is what I have been on. Verapamil Triptans -Imitrex(injection, tab, nose-spray) -Maltrox -Amerge -Zomig Various hypnotics and sedatives(During this time the goal was to get me to sleep. But as you know, sleeping and clusters don't go in the same sentence) PHenobarbital Oxygen Depakote Dhe-45 Cafergot Localized injections of freezing(can't remember the name) and cortisone Tylenol Celebrex Demerol(narcotics were a last resort but have been a blessing) Percocet NSAIDs -ibuprofen -indomethancin -toradol -aspirin Elavil Remeron Luvox Effexor Trazodone Tegretol Current Meds: Neurontin 400mg Celexa 20mg Dilantin 300mg (I have seizures that started about a year after my first attack) Propranolol 80mg Duragesic 50 patch(fentanyl) There are two notable omissions from your list Paul. One has been mentioned and that is Prednisone. I didn't quite understand your comment about orthopaedic damage resulting from taking Prednisone in the past but would wager that dosage and the length of time you were on it may have had a role. Honestly, I do not know if steriods is a good course for chronics. By their nature they are transitory drugs, and prednisone is often taken by episodics while they simultaneously take verapamil and build up its efficacy through a consistent dosing scheme. Perhaps someone else could comment on steriods for chronics. Its possible that a course of steriods could provide a period of relieved symptoms. I don't know any chronicor episodic that wouldn't buy into that. The other ommission is more notable and that is Lithium. Here is a brief intro: http://www.headaches.org/consumer/topicsheets/lithium.html Here is a brief but encouraging abstract of a study you may want to try to locate. http://bjp.rcpsych.org/cgi/content/abstract/133/6/556 |
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Title: Re: How do Chronics deal... Post by judyw on Aug 21st, 2004, 8:44am One Day At A Time...sometimes measured by the second...You have quite a cocktail still being served, I see...my question with this list is what the dosages were? That seems to be a major secret to success with any of the meds...Like why Celexa and Propanalol? Why not up the Propanalol/Inderal for better effect? Tho, for me it didn't work, where the Inderal did, go figure...but my doses were much higher...Prednisone taper to start sometimes works, but sounds like you should stay away from it...Does major damage in other areas as you know...Cortisone, too...O2, lpm/nonrebreather mask ?...I have done the alternative and thankfully have had a break and a decrease in my hits...still know it is around, but so much more liveable at the moment...keep reading, learning is the best medicine of all...keep us updated on how things are going...PPP judyw |
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Title: Re: How do Chronics deal... Post by Jonny on Aug 23rd, 2004, 4:08pm Chronics deal.....One day at a time! ...................................jonny |
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Title: Re: How do Chronics deal... Post by Little Deb on Aug 23rd, 2004, 4:38pm One BIG way chronics deal..... www.clusterheadaches.com bowing down to DJ..............................Little Deb(episodic-thank God) |
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Title: Re: How do Chronics deal... Post by ExPat_jac on Aug 24th, 2004, 1:21am on 08/23/04 at 16:08:45, Jonny wrote:
sometimes...it's one minute at a time.... The thing that helps me most? Knowing that even THIS headach WILL stop....sometime. They all do.... |
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Title: Re: How do Chronics deal... Post by mynm156 on Aug 26th, 2004, 3:43pm It is REALLY hard. I have recently had some improvment. I still get CH Couple times a week. However, there is the WAITING!!! and I hate the Shadows!!! That lingering pain that never goes away. Good Vibes !! MYNM156 |
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Title: Re: How do Chronics deal... Post by nancyc on Aug 30th, 2004, 6:36pm Paul, everyone deals in their own way...that is just how GOD made us...we can ask a million people and get a million answers...and everyone thinks theirs is the best one..but guess what...noone will probably have yours...cause you are made to be an individual and we are all different but Special in our own ways...you have to find your own path unfortunately....And I pray you are able to especially having to deal with chronic clusters.... I, too, went thru all the medications being chronic and ended up on pain management..Today, I deal with chronic chs and bulging cervical discs with pinched nerves, etc....I was pretty much pf from chs except for a few breakthrus for almost 2 years...Well, guess what...That is not the case now..I am getting pounded and pounded hard. All my medications are back firing and I am having some bad side effects from them. Life sucks pretty much rite now...And I am living pretty much one second at a time...Feeling those feelings of fear again. Scared of running out of imitrex shots at any time now. Knowing sleep will become a precious thing to me. And trying once again to figure out how to survive the beast. You would think after dealing with him for over 25 years, I would know the sucker pretty good...but he seems to outsmart me right when I think I have him pegged. All I can tell you bro, is to hang in there and know that you are not alone in this fight. You will be in my thoughts and prayers and if you need a comrade in battle during the wee hours, email me anytime...God bless...smiles,nancyc |
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Title: Re: How do Chronics deal... Post by Karla on Aug 30th, 2004, 11:01pm I would recomend trying lithium 900mg and if that doesn't work by itself try it with verapamil (which also may not work by itself) and Topamax up to 600mg. I took 10mg methadone in am and 10mg in pm and was pain free for a year. Then I took duragesic patch 50mcg by itself for a year and it kept me pain free. I went off all pain meds in March and have been miraculously pain free for the last 25 weeks where I used to get hit 8x/day years on end. I just take it one day at a time and sometimes one second at a time. I come to ch.com and headachessupportgroups.com for support. It has made a wonderful difference in my life comming to these support groups and meeting other clusterheads. |
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