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codeofchivalry
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Sometimes the day seems like the night, Shine!
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entirely new to me...
« on: Feb 25th, 2005, 8:44am » |
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Hi all,
I am a 47-year old male. In the last 6-weeks this hell has become entirely new to me, but the emergency room staff is getting to know me very well. I have had all the tests, MRI, CAT scan, and MRA.
Diagnosis is, cluster headaches. The onset of pressure behind my right eye starts the following chain of events, right eyelid droops, right sinus shuts, and within minutes of these to warning signs, all hell breaks loose. I push so hard on my right eye that I am very surprised that it is not damaged. Like most, this is wearing me down quickly. I have much to read and learn; thank God I am not alone in this hell.
Brian
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The light shines in the darkness, but the darkness has not understood it.
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
 
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Re: entirely new to me...
« Reply #1 on: Feb 25th, 2005, 8:55am » |
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Hello Brian and welcome, just sorry you had to come and find us.
What meds are they giving you to help you battle the beast at the moment?
There is alot here for you to read and take on board but rest assured we WILL help you find your silver bullet!
If you have any questions fire away, there is a wealth of knowledge and (sadly) experience here for you to draw from
Let us know how you are getting on
Helen
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codeofchivalry
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Sometimes the day seems like the night, Shine!
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daily regime of medications...
« Reply #2 on: Feb 25th, 2005, 9:21am » |
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It’s been a crazy nightmare; they put me on Tequin and Duratuss for 5-weeks to start with, I was told to finish out both of these prescriptions, it will be about another week till they are finished. Then we added prednisone for 5-days, with Nasacort sinus spray. They have now added Clarinex to the daily regime of medications. My stomach is upset constantly. To fight the pain, I take the following, Migrazone, Tramadol, Hydrocodone, Amerge. Seems like a hit or miss type of approach to me, I would like to narrow down the list of medications, to what actually works, if possible. That’s why I came here, to assemble a kit to take with me, so when it starts, I don’t have to start a barrage additional pain medications on top of all the other medication that I take daily, in order to escape the pain. All this medication is wiping me out, to say the least.
Brian
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The light shines in the darkness, but the darkness has not understood it.
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karma
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Re: entirely new to me...
« Reply #3 on: Feb 25th, 2005, 9:36am » |
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Hi Brian,
Lancaster? I lived in Quarryville for awhile during my serious horse riding days.
Read about oxygen from the selection of stuff on the
<-------- left.
Try and stay away from the pain meds. they have little to no affect on the pain and can cause more hits(rebounds)
Sinus meds probably aren't helping at all.
Visit www. clusterbusters.com
Lots more stuff for you to read about. Don't be shy about asking questions.
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KMT
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Re: entirely new to me...
« Reply #4 on: Feb 25th, 2005, 11:04am » |
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Next time you go to your Dr or even call the nurse for Him/Her give her the list of meds you are currently taking. Let her know that certain ones just aren't working, because to me it sounds like you are on one to many meds that aren't making a difference. Not to mention can cause other problems there is drug interactions and never take a drug on empty stomach just a rule of thumb take with a glass of milk at least. Some Dr. forget what all they put you on and don't remember to tell you to stop taking certain ones. Just be an information magnet... 
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aka...................................................... KimY
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Bob_Johnson
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Re: entirely new to me...
« Reply #5 on: Feb 25th, 2005, 11:28am » |
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A good, organized book is the best way to start your learning about this new problem. I'd suggest either title:
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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codeofchivalry
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Thanks, for pointing me in the right direction
« Reply #6 on: Feb 25th, 2005, 8:03pm » |
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This is where I am, in all this…
Please understand, that all 3 of my doctors prescribed medications, (i.e., a D.O., an ophthalmologist, and an Otolaryngologist), and apparently they don’t know this yet, because I was initially terrified of being hospitalized, so I never told them. I am about to change all that, now that I was finally told this week what the diagnosis is. But, in the interim, this is what I had been doing, so please don’t judge me, I feel among friends here.
I was afraid to share this with anyone, but, when I felt one of these skull crushing eye poppers coming on, I immediately initiated a risky course of action. I literally started popping an assortment of painkillers and abortives, making a cocktail of sorts in my mouth, and immediately chewed them up into a chalky mush. Sometimes, when I felt the pain overtaking me rapidly, (i.e., unusually fast and particularly furious), I washed them down with a cup of hot tea to speed up the digestive process, thereby getting the drugs into my bloodstream much quicker. Quite frankly, at the time, I did whatever it took, just to avoid the agonizing pain. Even then, occasionally, I still ended up in the emergency room. I know this sounds crazy, but I did whatever it took to avoid the agony of these cluster headaches, and being hospitalized.
The trade off is this; I sometimes became incoherent, due to the large cocktailed dose hitting my system all at once. I fear the last couple of times I tried this in extra large doses, just to avoid going to the emergency room; I may have been dangerously close to overdosing. At the time, nobody seemed to know what to do for me, so I risked taking things into my own feeble hands, by haphazardly using whatever available drugs happened to be at my disposal, at that moment. I now know what the diagnosis is, and see that there are other people with this, and that they are dealing with it in much safer ways. Things have gotten better, but I need a new arsenal, just in case, and currently, the old one is all I have at my disposal.
Apparently, I need to make a list for my D.O., and have him write prescriptions for specific, and much safer medications. I feel like such an ass, but at the time, I didn’t know what was wrong with me, or what else to do, except to stop the pain with the prescriptions I was given, whatever the price. How pathetic is that? Thank you for pointing me in the right direction, I was definitely going down the wrong road.
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TxBasslady
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Re: entirely new to me...
« Reply #7 on: Feb 25th, 2005, 8:24pm » |
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Welcome to the board, Brian
Keep in mind.....narcotic drugs can cause rebound headaches. They do very little for CH. You need a Triptan drug to treat the CH.
Read the links on the left of this page. Print out what you need and take it to the doc when you go.
Docs that are up to speed on CH will not prescribe narcotic pain killers.
Be careful mixing all that stuff....
Hope things get better for you.
PF vibes,
Jean
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kissmyglass
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Don't Mix Triptans
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Re: entirely new to me...
« Reply #8 on: Feb 25th, 2005, 8:30pm » |
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I did the exact same thing for 2 years trying to stop these fuckers. 8 percocets dissolved in a shotglass of water, whole bottle of excedrin ect. Then I found this place & now I'm good to go. (well pretty much anyway)
read all you can , educate your docs.
Good Luck!!
Kev
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E-Double
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Re: entirely new to me...
« Reply #9 on: Feb 26th, 2005, 8:44am » |
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Bring this to your doctor!
A great resource to educate yourself and the guy with the medical training
http://www.brightok.net/~mnjday/chtherapy.pdf
With CH the use of antibiotics are not going to help....Not and infection.
Pain killers work for some but MOST of us use triptans and Oxygen to abort.......
Read the file I sent you and you'll have a stronger grasp on the nightmare....It'll help tons!!
Try your hardest not to let it take over and to live with a positive attitude!!
Good luck !!
Eric
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EmpressJMB
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No Brain, No Headache
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Re: entirely new to me...
« Reply #10 on: Feb 26th, 2005, 2:45pm » |
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Dear Brian, Welcome, but sorry your here. You won't be judged here for the things you've done to abort the pain. We all know how excruciating the pain is and have done bizarre things to get rid of it. I myself, used to do the same thing you did. I'm surprised either one of us lived through it! Remember, there is hope and CH can be controlled. You need to educate yourself because many Dr.'s haven't a clue about CH. There is alot of great info and support here. I highly reccomend that you find a knowledgable neurologist. Pain free wishes to you! Janet
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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