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Topic: Failed medication research (Read 1659 times) |
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Alchiba
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Failed medication research
« on: Feb 18th, 2008, 7:24am » |
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I apologise, i'm up late. This will serve as my introductory post, and also, a spur of the moment plea for help. I am attempting to write a short story, possibly more about a man with Cluster Headaches, and so I've turned to this message board for help. I hope to communicate pain and coaping and anguish and the loneliness felt by a young man without a supporter, and I need to hear your voices to do this. I don't feel right just Wiki'ing information and searching for links, I want first hand accounts.
First and foremost, as an impulse post, I posted in this section to get some facts straight. What is the most typical treatment doctors would prescribe? I read things about subcutaneous abortive injections, what medicines are prescribed to treat cluster headaches in that manner? I know painkillers don't often have an effect, I read that they're mostly worthless, but how about Lithium preventative treatment. I want to hear failure stories, mostly. What doesn't work. The man I have in mind, he's tried. He's exhausted all of his options. First I need to build a history, then I'll work on what's currently working for him as far as treatment goes. Mind you, I know very well that his entire story shouldn't be centered around it, just as people here have their own lives and families. However, being a man living alone is not simply his situation. His condition is a physical manifestation of his mentality, at first unbearable, and then he begins to cope. This is the direction I have in mind for it, at least.
If it helps, my intent for his rhythm is that his attacks are frequent enough to affect his life, but with a respite of around a month and a half in between week-long periods. Two major headaches in that period, with several lesser attacks occuring sporadically within the time frame. From what I've read, this is not too far fetched of a cycle. Please, please correct me if i'm already being inaccurate. Please. This is what I'm here for. I want to empathize, I want to really, really get to know this man and his condition before I write. I care deeply about my characters (Though I know it doesn't seem like it, giving him a condition like this
 ) and I would like his story to mean something. I want people to say, "Hey, yeah, I know what that's like" instead of "Ugh! this person doesn't understand it at all!"
Please assist me. I write for my personal enjoyment, and I've been spending my time these past two weeks weasling my way under his skin to get to know him. I just don't think I understand enough yet. I've done research on men. I've lived like a man, my every action taken pretending I was this character. It still seems false, though, if I cannot comprehend his basic underlying problem. I hope this demonstrates to you how much I care about my characters, and how important portraying him authentically is to me.
First thing's first, though.
Medications. I want to hear all the crazy stuff doctors have shoved at you. The needles, the pills, the useless wastes of time. The desperation a reoccuring nightmare, of feeling like nobody can help you, even when you've gone out and sought help.
(I went and looked at the general help board, and It still seems fitting that I post this here. I hope I get an adequate response.)
(Edit: The more I write and think about this man I'm writing as, the more I care about him. Please assist! I know it seems silly. It seems odd...but I think in order to be a good writer, maybe that's what you have to be.)
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| « Last Edit: Feb 18th, 2008, 7:36am by Alchiba » |
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AussieBrian
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Re: Failed medication research
« Reply #1 on: Feb 18th, 2008, 8:25am » |
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Welcome home, Alchiba. Your character can have all the names and faces that he chooses but we'll only ever tell him the truth.
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monty
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Re: Failed medication research
« Reply #2 on: Feb 18th, 2008, 8:28am » |
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on Feb 18th, 2008, 7:24am, Alchiba wrote:
If it helps, my intent for his rhythm is that his attacks are frequent enough to affect his life, but with a respite of around a month and a half in between week-long periods.
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Maybe, but a more common pattern would be periods of 4-8 weeks of headaches every day, twice a year. Could be spring/fall or summer/winter, or less regular.
on Feb 18th, 2008, 7:24am, Alchiba wrote:
Two major headaches in that period, with several lesser attacks occuring sporadically within the time frame. From what I've read, this is not too far fetched of a cycle. Please, please correct me if i'm already being inaccurate. Please. This is what I'm here for. I want to empathize, I want to really, really get to know this man and his condition before I write. I care deeply about my characters (Though I know it doesn't seem like it, giving him a condition like this |
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Try two or more major (and a few lesser) headaches per day, not per cycle. Excruciating pain that makes it impossible to function or focus on anything else. A swollen eye with tears running out of it, with redness and visible swelling on one side of the head. Each headache lasting 15 minutes (rather short) to 3 hours (rather long) - 45 minutes is pretty typical for me.
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The outer boundary of what we currently believe is feasible is far short of what we actually must do.
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Bob_Johnson
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Re: Failed medication research
« Reply #3 on: Feb 18th, 2008, 8:34am » |
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These links will give you current information on how CH is treated.
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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On the left of this page, go to medications, and see the non-scientific survey of what folks here have reported.
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If you want to see what good medicine looks like:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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I wish you would reframe your story for, if the title of your message conveys the tone of the proposed story, it reflects a serious misreading of the scientific method and the history of medicine (around CH).
Compared to 35-years ago when I started with CH, we are living in heaven! The slow development of good understanding and of treatment reflects the deep poverty of understanding of the nature/etiology/processes of CH, poverty which is just starting to yield to new research (especiallly by Dr. Goadsby).
CH reflects such a small % of the disorders which docs treat that money has been slow to flow in our direction for basic research. Much of the treatment we have has been a spill over from research on migraine. That there is so little education in medical school about Cluster also reflects a competition for time--what do teach to young docs-in-the-making? Clearly, time goes where the need is--largely determined by volume of disorders docs will see in their practice.
Some historical perspective would give your story more balance and opportunity to hope.
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| « Last Edit: Feb 18th, 2008, 8:49am by Bob_Johnson » |
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LeLimey
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Re: Failed medication research
« Reply #4 on: Feb 18th, 2008, 8:46am » |
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I'll happily share anecdotes about my experiences but I have a question too! What made you think of CH? Where did you hear about it? I'm just curious as it's not a very well known condition and I wondered how you came to hear of it. I'm very glad you have, I hope we can all help you as helping you can only help us too in a roundabout way.
Just to add to Bob's links you may also want to check out www.clusterbusters.com for alternative methods of treating CH. There are some video clips on YouTube too which, although graphic, may help you see what it's like for us.
Regards
Helen
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Alchiba
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Re: Failed medication research
« Reply #5 on: Feb 18th, 2008, 8:57am » |
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The response to this thread already has made me really excited! I'll be reading through everything and watching the videos provided today, but I still haven't slept and it's almost 9am. I was just finishing up some writing i'm doing on the side, and I was on a roll.
I'll start with the easiest thing to respond to,
on Feb 18th, 2008, 8:46am, LeLimey wrote:| I'll happily share anecdotes about my experiences but I have a question too! What made you think of CH? Where did you hear about it? I'm just curious as it's not a very well known condition and I wondered how you came to hear of it. |
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I was sitting here, contemplating if I wanted to buy a pack of cigarettes vs how hard my boyfriend would freak if he knew I was going that far to get into the mood of my writing (He hates smoking), and I got this intense stabbing pain in the side of my head, like a hot needle. Just a wicked intense, very brief headache. (I'm sure it's absolutely nothing compared to anything on this board, though.  ) After reeling for a minute or so, I thought, ok, ok, I can use this, let me look up headaches as a symptom on wikipedia and see how far that gets me. I saw the stories, how hard this hits, how the pain gets so bad the person can become self destructive, and wow. It completely morphed the character in my mind, when I thought of his behaviors in that light. It gave so many more dimensions. I guess it sounds messed up, but I fell in love with the tragedy I saw in my character's eyes. From the very beginning, I knew he'd have sad, tired eyes, and this condition, this would explain everything. It was like a puzzle piece that snapped in perfectly. Anyway, after my brief google infactuation with Cluster Headaches, I couldn't see him in any other light. It was done, it had been decided.
With that, I'm going to sleep. It's 9am and I am going to sleep. Ugh. My boyfriend will hate me for this. Thanks for the response, I'll check through everything when I get up!
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| « Last Edit: Feb 18th, 2008, 8:58am by Alchiba » |
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Alchiba
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Re: Failed medication research
« Reply #6 on: Feb 18th, 2008, 9:05am » |
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Ok, I lied. One last clarification post before I rest.
on Feb 18th, 2008, 8:34am, Bob_Johnson wrote:
I wish you would reframe your story for, if the title of your message conveys the tone of the proposed story, it reflects a serious misreading of the scientific method and the history of medicine (around CH).
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It's not a desperation story, this is me building his past. Things that haven't worked, being desperate at the beginning, yes. What story is good without inner conflict at first? The sadness, failed medications, etc are all mistakes he's made, and trials he's endured thusfar. He will get better, I promise. I simply want to build him from the ground up- what hasn't worked first. I don't suppose many people hit on the solution to their problems, are properly diagnosed, or have their prophylactics prescribed perfectly the first few times. I've read plenty of stories about people being suspected of being drug seekers, of being prescribed things with awful side effects, stuff like that.
At the onset, I believe, he'll be recounting his past. How bad it was for him. I really want to convey the seriousness of the pain, and how hard it can hit when you're alone with no support.
This is a story about a man maturing, and learning how to manage this as part of his life is one of the key steps.
The failed medications are a part of his past, and a little bit of his present when the story begins. He hasn't been suffering long, in my mind I think.
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| « Last Edit: Feb 18th, 2008, 9:12am by Alchiba » |
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hotprestwich
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Re: Failed medication research
« Reply #7 on: Feb 18th, 2008, 12:31pm » |
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I think first you have to decide if the man in your story is episodic or chronic, im episodic and i live life normally
apart from 5-8 weeks when a cycle comes round, i can go 3-4 years of pure remision, its bliss, my heart goes out to the chronic sufferers and i have no idea how they deal with the condition all the time,
when a cycle hits well i get 300 plus headaches in a cycle, of the most excrusiating pain (is that spelt right)
i feel isolated with freinds cos they dont understand it, i have to watch them drink knowing that i cant have one, i wanna still socialise with my mates but its hard when there so pissed, and all they try to do is get you to have a drink, frustation, we live in fear of sleep as that is our biggest trigger, "relaxing" soon as you start your eye starts the twitch and then its not long untill the dance with the devil, wich you know that as soon as its over and you manage to crawl back into bed starts all over again an hour later,
as for the meds, well i choose not to take them, yes i hit the caffine and the 02 bottle but thats where it stops for me, i dont shoot up chems, i have found that with no chems my cycles can be shorter, 5 weeks instead of 8 weeks, others may tell you of there drug experiences,
but if i was to experiment then it would be a clusterbuster method, you should defo research there web-site,
i think the biggest thing was for me not knowing what i had its hard to get a diagnosis for this and apparently i had chronic sinus infections for years according to the docs, i also started to think that i had a brain tumor, but whenever i got round to doing somthing about it the cycle would end, and the pains not there, when im pain free i live life totally normal and its easy to forget about the suffering, finding this web-site was the best, cos you have people here who really do understand the beast in our heads, makes us feel a little less crazy, knowing that there are others,
other than that i live a normal life i work as a cave-diving guide in the Riviera Maya, living in paradise, untill the beast wants to visit me,
i hope i helped you a little bit, i like the fact that you want to get your Facts right.
good luck and let us know how your story goes,
Dave
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monty
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Re: Failed medication research
« Reply #8 on: Feb 18th, 2008, 12:53pm » |
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If you want to write about failed meds and frustration, then maybe have the guy misdiagnosed as a sinus headache sufferer. The doc gives him antibiotics and decongestants and NSAIDS/pain pills that help very little or not at all. It's all too common.
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Brew
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Re: Failed medication research
« Reply #9 on: Feb 18th, 2008, 1:28pm » |
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Are you prepared to split your royalty checks?
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Stinger
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Re: Failed medication research
« Reply #10 on: Feb 18th, 2008, 1:43pm » |
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For me, meds aside(I have tried literally everything) each headache is all about time. Mine are generally 45 minutes to an hour in length. 2-4 a day during the cycle of 4 months. Then 1 1/2 to 2 years later, it happens all over again. I can count on it. I say time is the most important factor because I know each headache will last about one hour. I walk the beast from room to room and each time I pass a clock, I look and see what time it is, because I know it will be over in the time period. Minutes pass and I try to concentrate on the exact time that the headache peaks and then I know that with some more time, it will start slowly decreasing in intensity. Even though time doesn't seem to be on my side during any given attack, I still cling to the fact that time will weaken the beast for awhile. And when the beast is mostly gone I get a feeling of euphoria because the pain is gone. Even though I still have residual pain for awhile, it is nothing like the pain I just endured. Then I am able to relax somewhat and then the fear starts in thinking about the next one even before I am totally over this one. Time is on my side. Time is relative becasue the minutes seem to go by at half speed, but I do know that within minutes (within the hour) all will be well.
Perhaps you can get some good hints from Steven King. He seems to be a master at strange happenings, which is what a CH really is.
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Alchiba
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Re: Failed medication research
« Reply #11 on: Feb 18th, 2008, 2:56pm » |
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For all your help, I've decided to reveal something about my main character.
Hideaki Sato.
He's going to fall in love with a Scottish girl, but is terrified that she'll not think he's worth the bother.
She will understand him, eventually.
on Feb 18th, 2008, 12:31pm, hotprestwich wrote:I think first you have to decide if the man in your story is episodic or chronic, im episodic and i live life normally
apart from 5-8 weeks when a cycle comes round, i can go 3-4 years of pure remision, its bliss, my heart goes out to the chronic sufferers and i have no idea how they deal with the condition all the time,
when a cycle hits well i get 300 plus headaches in a cycle, of the most excrusiating pain (is that spelt right)
i feel isolated with freinds cos they dont understand it, i have to watch them drink knowing that i cant have one, i wanna still socialise with my mates but its hard when there so pissed, and all they try to do is get you to have a drink, frustation, we live in fear of sleep as that is our biggest trigger, "relaxing" soon as you start your eye starts the twitch and then its not long untill the dance with the devil, wich you know that as soon as its over and you manage to crawl back into bed starts all over again an hour later,
as for the meds, well i choose not to take them, yes i hit the caffine and the 02 bottle but thats where it stops for me, i dont shoot up chems
...
good luck and let us know how your story goes,
Dave |
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Monty here has been awesome with providing me with a more realistic cycle for my main character, so I think what will be decided on won't be far from what he suggested.
Now, you say, caffiene, 02 bottle, chems. Elaborate. I know firsthand my mother would get these bizzare, stitch in her side athsma-like attacks and the only relief she got would be, she'd scream for me and i'd realize what was going on, i'd pop some water in the microwave for 30 seconds and dump some instant coffee in there. That seemed to reliueve most of her chest pains. Similar process? 02, as in those breathing masks, i've read about, yeah i've done enough research on those to know that they're pretty effective. He'll probably end up settling on a treatment incorporating those if what everyone says is true. Chems, now, I don't know a lot about them other than their names. That's where i need the most elaboration, I think.
on Feb 18th, 2008, 12:53pm, monty wrote:| If you want to write about failed meds and frustration, then maybe have the guy misdiagnosed as a sinus headache sufferer. The doc gives him antibiotics and decongestants and NSAIDS/pain pills that help very little or not at all. It's all too common. |
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Yes, this. Monty, you're a tremendous help! Everything you've posted so far has been spot on for what I mean 
on Feb 18th, 2008, 1:28pm, brewcrew wrote:| Are you prepared to split your royalty checks? |
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Like I said, I write for my own enjoyment. I'm young, I'm 19-almost-20, and someday, someday writing might be a lucrative career. As for now? Chyeah, I wish.
on Feb 18th, 2008, 1:43pm, Stinger wrote:For me, meds aside(I have tried literally everything) each headache is all about time. Mine are generally 45 minutes to an hour in length. 2-4 a day during the cycle of 4 months. Then 1 1/2 to 2 years later, it happens all over again. I can count on it. I say time is the most important factor because I know each headache will last about one hour. I walk the beast from room to room and each time I pass a clock, I look and see what time it is, because I know it will be over in the time period. Minutes pass and I try to concentrate on the exact time that the headache peaks and then I know that with some more time, it will start slowly decreasing in intensity. Even though time doesn't seem to be on my side during any given attack, I still cling to the fact that time will weaken the beast for awhile. And when the beast is mostly gone I get a feeling of euphoria because the pain is gone. Even though I still have residual pain for awhile, it is nothing like the pain I just endured. Then I am able to relax somewhat and then the fear starts in thinking about the next one even before I am totally over this one. Time is on my side. Time is relative becasue the minutes seem to go by at half speed, but I do know that within minutes (within the hour) all will be well.
Perhaps you can get some good hints from Steven King. He seems to be a master at strange happenings, which is what a CH really is. |
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Very helpful, thank you. I'm so sorry you all have to go through things like this. Writing this is going to make me a huge supporter, I think.
Ok, now i'm grabbing some food, but i'm really, really, really going to look at those links when I get home.
In the meantime, i'll pose a question for a more specific response- Chems. Elaborate. I read about subcutaneous injections, like how a diabetic injects insulin. what sort of meds use that method, I know i read about some. Anyone has some first hand accounts? Other than his antibiotics and stuff from being misdiagnosed, what are some things that you'd get from a proper diagnosis, but just don't work for some people? I read a list a mile long of medications on a bunch of websites, and I see that 02 works for a hell of a lot of people, but how about some other stuff. Keep throwing 'em at me.
I appreciate all of your help. I love my character, and I think I'll read his story, or parts of it, at the Juggling Gypsy when I'm finished. It's a downtown hookah bar/gypsy cafe where they have storytelling and poetry and open mic nights every night of the week. Some nights they go out front and do firespinning, even. It might garner some attetion and spread awareness, do you think?
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Superdave
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Re: Failed medication research
« Reply #12 on: Feb 18th, 2008, 5:42pm » |
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Pick me! Pick me! I’m Chronic, I’ve been through all that stuff + cancer misdiagnosis, surgery and divorce. I knew one of those 3 would have remedied my headache for sure, but no.
Neither did the neurologists, family practitioners, pain prevention doctor, the shrink, Chinese medicine, chiropractor, acupuncture, herbal specialist, raki, message, antidepressants, antispasmoic, antianxoty, quitting smoking, quitting drinking, quitting coffee, quitting junk food, quitting sweets, quitting sex, being addicted to sedatives, quitting sedatives.
Mama’s love or God
This condition can really play tricks on your mind and you'll try anything. Including banging your head on things, it doesn't work.
But the people on this board have helped me!
You know who you are.
Thanks you guys 72 hours !!! PAIN FREE !!!
Superdave
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Wow! you mean it's just in my head?
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tommyD
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Re: Failed medication research
« Reply #13 on: Feb 18th, 2008, 5:49pm » |
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Misdiagnosis can be a serious fact of life for clusterheads, especially when they lead to invasive but ineffective treatments. A common story around here: CH attacks misdiagnosed as dental problems leading to unnecessary tooth extraction, sometimes demanded by the desperate patient over the objections of dentists and oral surgeons. Misdiagnoses as sinus conditions have also led to unnecessary surgery.
One of the videos recommended shows a man trying to hold and calm a clusterhead during an attack. Understand, this rarely happens - most clusterheads want to be left alone while under attack, and most supporters know enough to keep their distance. This video always amazed me in that the clusterhead somehow refrained from punching out the fellow trying to help. This can be a source of social conflict and complications between your character and those around him, as he avoids and rejects loved ones, friends co-workers, the boss, etc.
This can be another source of conflict... people witnessing a cluster attack want to call an ambulance, but many clusterheads don't want an ambulance - often the attack is over by the time one arrives, and EMTs and emergency room docs often don't know how to treat a cluster attack. Some conclude the patient is an addict faking the attack in order to get opiates. Clusterheads cannot lie down and be still, which of course is just what the ER nurses want you to do... Folks around here have described some pretty wild scenes in emergency rooms.
And hang around and read, this place is just full of drama queens...
-tommyD
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| « Last Edit: Feb 18th, 2008, 5:51pm by tommyD » |
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www.clusterbusters.com
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Alchiba
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Re: Failed medication research
« Reply #14 on: Feb 18th, 2008, 7:25pm » |
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It's not a matter of picking anybody, I want to hear it all. I really want Hideaki to feel the whole spectrum of things, anger, sadness, despair, but also learn how to cope. I think I'm going to go for more of a chronic-type cycle instead of a bi-yearly. (Poor Hideaki. I feel bad for him, as his creator. Is that weird?)
and hey, TommyD, i'ma take a look around for that video as soon as i'm done cooking me up some dinner (Sticky rice, anyone?) .
I've decided, he's scared of living alone. He'll have a roommate, but he'll end up moving out to "greener pastures" (Paying rent and having to deal with your flatmate crying through his teeth in the middle of the night wasn't working out for him), and that's when Hideaki will really start to fall.
So lonely. If only his roommate understood him.
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| « Last Edit: Feb 18th, 2008, 7:28pm by Alchiba » |
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PollyPocket
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Re: Failed medication research
« Reply #15 on: Feb 18th, 2008, 8:04pm » |
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hmmmmmmmm
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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BlueMeanie
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Re: Failed medication research
« Reply #16 on: Feb 18th, 2008, 9:28pm » |
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Do you have CH's ? What's the point here ? I'd hate to see some fictious book about a serious illness especially from someone who would never understand. Sorry to be so pessimistic, but as serious as I take our illness, something just doesn't smell right here.
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Alchiba
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Re: Failed medication research
« Reply #17 on: Feb 18th, 2008, 11:51pm » |
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on Feb 18th, 2008, 9:28pm, BlueMeanie wrote:| Do you have CH's ? What's the point here ? I'd hate to see some fictious book about a serious illness especially from someone who would never understand. Sorry to be so pessimistic, but as serious as I take our illness, something just doesn't smell right here. |
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You're right, somebody without CH shouldn't even bother to try and understand the condition, right? Only authors who have CH are allowed to write about it, I suppose. 
I've got my information. If it's taken as "fishy" i'll take my leave. Thanks for the help from those that would.
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| « Last Edit: Feb 18th, 2008, 11:53pm by Alchiba » |
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BlueMeanie
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Re: Failed medication research
« Reply #18 on: Feb 19th, 2008, 12:30am » |
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You can write about whatever pleases you if you choose. I just find it strange that you'd look on the net and find something to write about without 1st hand knowledge. You never said if you yourself have CH's or maybe a close friend or relative. Have you ever witnessed an attack other than a youtube video. I personally would prefer to see a book on CH's more fact based other than fiction but that's just me. Others may be thrilled with your idea.
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Failed medication research
« Reply #19 on: Feb 19th, 2008, 5:26am » |
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I start to feel a headache come on and I go to the closet and roll my little oxygen tank out. I turn the little knob to 15 lpm, hold the mask to m face and breathe. Most times it goes away in about 5 minutes. If not after 10 minutes, I pull out an injection of Imitrex, load it, and then hit the button. After a moment of pain in my leg where I injected I watch the clock for 4 and a half minutes. Then it is gone.
That's all the drama I've got today.
Scott
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seasonal boomer
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lennycohen
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Re: Failed medication research
« Reply #20 on: Feb 19th, 2008, 6:52am » |
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Things I've tried to end an episode: Prednisone taper (didn't work, started at 60, maybe should have started higher), Suboccipital nerve block (pain free for a week, didn't last) - now I just did a 500mg IV dose of Depakote (while on 1500 mgs a day oral) to try to break the cycle - did that a week ago, just got my first kip 7 last night - we'll see what happens as the days wear on. I'm also on 600mgs of lithium , 10mgs of Norvasc, and 250 mgs of Topamax divided day/night - been in cycle since 12/15, things seem to be easing up, don't know if it's the drugs, or if the cyccle is just ending - don't really care which -------
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Alchiba
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Vagrant by day, writer by night
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Re: Medication research
« Reply #21 on: Feb 19th, 2008, 7:52am » |
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Lenny, Seasonal, tremendous help.
And just to clear some things up, I'm not some predator lurking here. Some people may not understand my reasons, but they're mine and that's fine with me. You understand, right? I've explained myself several times in thi thread, and I am very, very much appreciative of those of you who continue to post useful stories of how you handle things. Changing the thread title. I'm pretty set as far as research goes, I might try to do a little more on allergies and side effects to things that haven't worked, I appreciate all of your help. My thanks to you all is tremendous.
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michael
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Re: Failed medication research
« Reply #22 on: Feb 19th, 2008, 8:30am » |
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I don't understand the logic BlueMeanie. I'm currently reseaching a book on the Apollo 11 moon landing, but I've never personally been there.
Alchiba, check your PM. Love the idea.
Mike
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Superdave
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Re: Failed medication research
« Reply #23 on: Feb 19th, 2008, 10:24am » |
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Alchiba,
I think every one in this little club of ours is interested in publicity for the sake understanding and one day finding a cure. It appears that most of us have had to endure this tragedy without proper diagnoses for many years simply because there is so little known about ch. I dealt with it every day for 5 years before I even knew the name of this condition and another 6 mos. before I found this web site. How did you find out about ch, family member, friend, TV, News article and why in Gods name would you think that its entertaining?
Your telling us that you write for fun or for your own reasons. Are these reason anyway related to helping us? Or is it just for the drama of it all? There is lots of drama here and pain, so much pain we can’t believe its not killing us. But we carry on in our lives and we really enjoy our pain free time. Please don’t make a mockery of these people, their hear to help each other and nothing more.
Superdave
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Wow! you mean it's just in my head?
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George_J
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Re: Failed medication research
« Reply #24 on: Feb 19th, 2008, 3:08pm » |
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I don't mind.
If I happened to be a migraineur, I don't suppose I'd spend any time worrying about how migraine or migraineurs were portrayed in fiction.
It's fiction.
I'm happy to satisfy the curiousity of any young person who wants to know more about CH--whatever the reason. What's the harm? I don't own this condition, and the bloody thing doesn't own me, although I know it well.
Alchiba, feel free to PM me if you'd like.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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