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toolong
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Tired of being drugged
« on: Aug 26th, 2004, 12:57pm » |
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First post and I'm going to get my anger out right away. I've suffered with cluster headaches all my life.In the past 5 years,every day.I've seen 9 different doctors in three different states,been given drugs that made me walk into walls,forget my name,made me sexually disfunctional,sick,tired,depressed,convulsions....on and on.I'm 54 years old with two grandchildren and try to live an active life.The doctors that I have seen have done absoulutely nothing for me but take my money.I've stumbled on to this site with hope of gaining knowledge from others with the same problem.You will be seeing me on here quite a lot.I'm willing to learn all I can.I'll listen to anything anyone has to say and try and sort out what I think will work for me.If anybody has any suggestions please feel free to pass them on to me,and I will do my best to do the same.Thanks for letting me a part of your group.David (toolong)[color=Red][/color]
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JDH
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Re: Tired of being drugged
« Reply #1 on: Aug 26th, 2004, 1:03pm » |
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Here's an alternative to prescription drugs that has helped many people here.
http://www.clusterbusters.com/
Jim
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Gator
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Re: Tired of being drugged
« Reply #2 on: Aug 26th, 2004, 1:50pm » |
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Welcome to the site, David. Sorry to hear you've had such a rough time of it. I am glad you found us. Vent away and get it out of your system. Most of us have experienced the various side effects that made the cure sound worse than the disease and we all understand the pain.
There is tons of information in the links to the left and on the OUCH website. The link Jim gave you is about an alternative therapy that has a very high success rate. And let's not forget the people here. If you ask a question, it will get answered. The answer may not be the one you wanted, but it will usually be honest and based on someone's personal experience or on actual research.
So tell us about the frequency, duration, intensity of your attacks. Also, tell us the preventative and abortive meds you've tried. Maybe there are other meds or combinations that have been effective for some here that you haven't tried.
One other thing I would ask is have you ever tried 100% oxygen. It is an effective abortive for about 80% of CH sufferers. 12 - 15 lpm for 10 - 20 minutes through a non-rebreathing mask is what works for most of us.
Again, welcome to the website.
Wishing you Pain Free Days And Nights (PFDAN),
Gator
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Killroy 2.0
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Re: Tired of being drugged
« Reply #3 on: Aug 26th, 2004, 2:57pm » |
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Vent a way - we all have to once in a while.
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Redrum
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Re: Tired of being drugged
« Reply #4 on: Aug 26th, 2004, 3:39pm » |
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Welcome, feel free to vent, learn and share. This place has sure helped me out.
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Bob_Johnson
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Re: Tired of being drugged
« Reply #5 on: Aug 26th, 2004, 3:48pm » |
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We are all believers in self-education. Start with the second title--worth every penny!
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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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Worth looking at this site also:
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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toolong
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Re: Tired of being drugged
« Reply #6 on: Aug 26th, 2004, 6:43pm » |
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Thanks to all who replyed.I'll learn names as time goes by. The only thing that does work and that is about 60% of the time is the oxygen therapy.Triptans are out of the question due to a heart attack June 24th.I will be trying some of the alternative Meds mentioned and let everyone know how they work out.Thanks again!
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unsolved1
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Re: Tired of being drugged
« Reply #7 on: Sep 5th, 2004, 11:58pm » |
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Welcome to the messageboard David. Sorry for the reason you're here.
Hope you find some meds that help soon.
PF Wishes,
Unsolved
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BlueMeanie
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Re: Tired of being drugged
« Reply #8 on: Sep 7th, 2004, 7:22pm » |
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Welcome TOOLONG,
Sorry to hear about your heart attack. You say 02 works 60% of the time. Do you use a high flow regulator and a non-rebreather mask ? If not, the 02 will probably increase your chances of being successful by using it correctly. Check the meds info. There are lots of prevents for Clusters. Unfortunately everyone has to mix and match until they find something that works. I believe Amerge (abortive med) does not effect your heart like the other tripans. Check with your doc about it. I was told it can be used as a prevent. Problem is, it is very expensive. Hope you find something that works for you. Make sure you take care of that heart of yours.
PFDAN
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toolong
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Re: Tired of being drugged
« Reply #9 on: Sep 8th, 2004, 1:05pm » |
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Thanks for the info PFDAN I'm seeing my doc next week and I'm going to check about the Amerge.As for the O2 I 'm using it correctly,as I was instructed 15 ltrs. per 15 min.Trouble is that I need to time my O2 when I first start my attack.I get Ch every day,but can keep them down around a kip 3 or 4 if O2 timing is right.I'm working with my insurance and doctor to see about a high flow portable tank,then I can get a jump on them at work or travel ect....Thanks to all of you for your information.I hope as I move along and learn I can pass some usefull information back to the group.David 
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nancyc
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Re: Tired of being drugged
« Reply #10 on: Sep 9th, 2004, 11:49am » |
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David, how are you doing? Read your post and could relate to it...I have one grandchild and having chs is really hard when you want to enjoy every minute with them.....Please keep us posted on how you are...smiles,nancyc
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toolong
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Re: Tired of being drugged
« Reply #11 on: Sep 14th, 2004, 1:05pm » |
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Headaches are the same as always.I can keep them under control with the O2(Thank God)Still trying to figure out a way to keep O2 with me all the time.So sorry to here about your grandchild.It's bad enough to be an adult with CH...but a child.Keep searching for an answer,you might find it on this site.I think I would speak to your doctor about the O2.A lot of children find it helps and it also relaxes them without all the crappy drugs the witch doctors want to push.Good luck.David 
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nancyc
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Re: Tired of being drugged
« Reply #12 on: Sep 15th, 2004, 12:10pm » |
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Hi David, no, my grandson does not have chs...i do...but he has to endure mine when i get hit....I only pray I dont pass this beast on to him....I can remember the pain and pure hell my son went thru when he was younger watching me get hit. Hope you are doing ok...please keep in touch with us...Know we do understand what you are going thru... nancyc
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toolong
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Re: Tired of being drugged
« Reply #13 on: Sep 15th, 2004, 6:44pm » |
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Sorry for the misunderstanding....too many CH over the years,must have my brain fried.I've found as mentioned on just about all my posts that O2 is my only defense that I have.I have learned about some new things to discuss with my Dr.One is a drug  callZyprexia(spell?)It is made by Lilly.I wonder if anyone knows anything about it.I might try a post to see if it's been tried by anyone here.As for my CH I use my O2 every day.It breaks the shadows down to a dull pain,but never does the demon leave.Hope the best for you.David
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