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mikebannon11
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Adversity doesn't build character - it displays it
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One more newbie
« on: Mar 8th, 2008, 1:07pm » |
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Thanks to all the 'veterans' who take the time to post here and help. I've been on the site for a few days (whenever I'm not pacing, banging my head, crying out of one eye, etc.) and I have tried to read everything. There are a few questions I haven't found answers to so any help would be appreciated.
First, I will concur with everyone here who says find a doc who knows how to deal with these things. In my quest to figure things out, I went through 2 Ear, Nose and Throat docs, a Dentist and 2 Neurologists. Finally, I found a Neurologist at a teaching hospital who knew what I had and how to deal with it...to an extent.
I've read a lot of comments about eye dilation on the cluster side. I have the opposite.....while I have Horner's symptoms, my eye won't dilate....or dilates very little. Is this normal? Abnormal?
Some of the info I have found also suggests that there is a predisposition in cluster sufferers to have depression...not just because of the exhaustion, or the effects this monster has on our lives, but also because it seems to effect the hypothalmus. Does anyone have any further info on this?
Could someone give me a definition of 'shadow'? I see that term a lot but I'm unsure about what is meant.
Does anyone have experience with using Neurontin (Gabapentin) to treat these things? My neurologist had me taking up to 5,400 mg per day....and since it's a drug that has few side effects it wasn't a concern. But I don't see a mention of it here.
I have tons more questions....and will appreciate any answers.
Thank you again to everyone associated with the establishment and maintenence of this site. It has been a lifesaver....in more ways than one.
Mike
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Stinger
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Re: One more newbie
« Reply #1 on: Mar 8th, 2008, 3:00pm » |
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There are some good definitions of shadow throughout the board, but to me, it is the sensation you get just as your headache is about to start. A mild pain in the same places as the pain you feel when the headache is full strength. Ear, throat, teeth and eye. It took me a long time, many cycles to figure it out. A shadow doesn't always lead to a headache, but it is usually a good indication that one may be coming on. That is when I take the Red Bull.
I am not not very good at explaining pain and sensations, but I hope that helps a little. Someone else will be along very soon and give you their definition, I am sure.
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Bob_Johnson
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Re: One more newbie
« Reply #2 on: Mar 8th, 2008, 4:17pm » |
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Gabapentin has not received much attention so far; one of several new meds which are being tried. I have only this article.
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Eur J Neurol. 2007 Jun;14(6):694-6.
The use of gabapentin in chronic cluster headache patients refractory to first-line therapy.
Schuh-Hofer S, Israel H, Neeb L, Reuter U, Arnold G.
Department of Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany.sigrid.schuh-hofer@gmx.net
Chronic cluster headache (CCH) is a rare but challenging condition. About 20% of CCH patients get refractory to treatment. Gabapentin has recently been reported to be efficacious in the treatment of CCH. To test the potential of gabapentin as second-line drug, we prospectively studied the efficacy of gabapentin as add-on drug in eight patients suffering from CCH refractory to first-line treatment. Six of eight CCH patients responded to treatment. After the end of the study phase, the patients' clinical course was further followed up until January 2006. The longest period of being continuously pain-free under gabapentin treatment was 18 months. In some individuals, increasing doses were needed with time. We conclude that gabapentin may be offered as treatment trial in patients refractory to first-line treatment. However, patients may fail to respond to treatment and drug tolerance may occur with time.
PMID: 17539953 [PubMed]
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Might be useful to explore the Robbins site. He tends to post current research.
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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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)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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mummymac
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Re: One more newbie
« Reply #3 on: Mar 8th, 2008, 4:19pm » |
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Quote:| I've read a lot of comments about eye dilation on the cluster side. I have the opposite.....while I have Horner's symptoms, my eye won't dilate....or dilates very little. Is this normal? Abnormal? |
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Mike welcome to clusterville.
I have spent time trying to look in a mirror to see if I get eye dilation during an attack I do not, nor do I get a bloodshot eye, unless I push and rub too hard during a CH attack The eyelid does swell and and droop though. It never really fully opens anymore, which sometimes annoys me if I spend too much time thinking about it.
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Tanya
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DennisM1045
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Re: One more newbie
« Reply #4 on: Mar 8th, 2008, 4:53pm » |
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Hi Mike,
Welcome! I'm glad you found us but I always hate the thought of another person knowing what these things feel like. Now, on to your questions...
Stinger gave you a pretty good description of a shadow. Mine don't always lead to an attack. I'm early in cycle now and I've had almost constant shadows for the last week but only one full blown hit. I'm not complaining 
I am generally a very up-beat person. But when I'm getting whacked in the eye every night I get depressed too. Who wouldn't? The good news is that as soon as my cycle ends so do the blues.
I tried Neurontin last year but couldn't deal with the side effects. I took 800mg for a month and never really got rid of that 2 martini buzz. I didn't feel safe driving and my job was suffering so I gave it up. I hope it works for you. It seems the only constant about us is that we are all different. What works for one doesn't work for everyone.
Good questions! Keep reading and asking. Let us know how we can help...
-Dennis-
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nani
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Re: One more newbie
« Reply #5 on: Mar 8th, 2008, 4:56pm » |
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Hi Mike. Welcome.
I get shadows between attacks. Just much lower level of pain in the same places.
I was on Neurontin for a long time. I find it very helpful for other neuropathic pain, but it only "dulled" my clusters a bit. It also adds pounds every time I'm on it for a while.
My pupil doesn't change, either.
Have you looked at the oxygen info link over there?
<-----------------
There's a lot to absorb... ask away. 
pain free wishes, nani
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Others may come and go, but MY power is MINE.
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coach_bill
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Re: One more newbie
« Reply #6 on: Mar 9th, 2008, 7:43am » |
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hey mike, never thought for a second so many of us go thourgh the same things did ya, like they say misery loves company, but i found no misery here, everyone remains upbeat and helpfull. after i 1st got here everyone helped me so much all i wanted to do was help someone eles.and yes after my cycle really kicks in gear, i get the blues too, but it wont take much for my wife to slap me out off it. although she knows this horror, she wont let me give up, she always makes me try. i dont get the droopey eye either, but it waters like a river, and i cant even open it during a attack, my other eye starts going about 30 mins into the horror show, but thats because i have started crying from the pain, and the last couple attacks i got when i started crying it seemed to lighten the attack. funny huh.. now about 10mins into a bad hit my wife says " start crying maybe it will help again". but it dont work that way. keep reading you will find the anwsers. feel better soon coach bill.
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Superdave
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Re: One more newbie
« Reply #7 on: Mar 9th, 2008, 12:37pm » |
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Welcome Mike,
Sorry that you suffer and that you need this place but thank god you've found us.
I have talked to someone this week about gabapentin.
He said that it was working really well for him and he has been thrilled with the results. I've passed along your question about this drug to him.
Pain free vibes your way
Superdave 
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Wow! you mean it's just in my head?
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mikebannon11
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Re: One more newbie
« Reply #8 on: Mar 9th, 2008, 10:34pm » |
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Thank you to everyone for your words of encouragement, information and your words of welcome.
You have already helped.
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PollyPocket
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Re: One more newbie
« Reply #9 on: Mar 10th, 2008, 9:08pm » |
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Hi Mike. Welcome.
I usually start out fighting the beast with an attitude early in my cycle, but about month #2 I get pretty depressed, so it seems fairly common. I've learned to appreciate all the moments between hits, and enjoy every single one with gusto- I guess that makes me just a hair stronger for the next hit.
I have a very distinct droop, no difference in the pupil, but the left eye droops dramatically starting well before any pain. Even when I'm medicating and its working, I still get the droop at the time the pain "should be" there.
I refer to shadows as "lurkers"- those demons that only have the strength to bug the shit outta me and remind me of what's coming before the big boys arrive. 
Stay strong, and hug that lovely wife of yours for doing such a good job being a supporter!
PF time to you!
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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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BarbaraD
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Re: One more newbie
« Reply #10 on: Mar 11th, 2008, 8:38am » |
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Mike,
Welcome to Clusterville. Sorry you had to find us, but pull up a chair and sit a spell -- read, read, read.
I don't know exactly where, but somewhere back in the 99 archives there's a serious discussion on neurotin. Some of us were on it (me included). I'd forgotten I was even on it (over the years I've taken so many different things). It didn't work pretty well for me - had some side effects, but that was me. If it works for you great.
As for depression -- it's just one of the things we go thru. I'm chronic and have periods of depression during a "high cycle". People on this board are real good about bringing you out of it to a point. It's the one place where people "understand" exactly what you're going thru and how you feel and where you can say about anything and everyone will know where you're coming from.
Shadows are "dull" CH in-waiting. They usually riv up to about a 3-5 and just hang there. I usually hit the Red Bull when they get to a 5, but anything under that I just hit the coffee pot and the O2.
If your neuro hasn't given you an RX for O2 (15liters with a non-rebreather mask) ASK for it! It's the FIRST line of defense with CH and works for MOST of us. It's ACCEPTED for CH and SAFER than drugs. Most of us swear by it.
Melatonin (OTC) at night (12-15mg) helps a LOT of us get thru the REM sleep and avoid night hits.
Again welcome to our little family. Read read read, ask questions and don't be shy. We're here to help and support.
Hugs BD
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What don't kill ya, Makes ya stonger!
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mikebannon11
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Adversity doesn't build character - it displays it
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Re: One more newbie
« Reply #11 on: Mar 13th, 2008, 7:14pm » |
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Thank you all very much. My wife is a saint....and while I try to keep a lot of it to myself (just want to be left alone) she knows when I'm getting hit...or having bad shadows. This thing has had an effect on the whole family....something I am not happy about.
One more question (I won't hog space lol).....does anyone experience swollen glands on the affected side during a cycle? I have seen reference to scalp and skin pain, but my glands in my neck and under my jaw get swollen and hurt...sometimes a very sharp pain.
Thanks again to all of you who are so kind.
Mike
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RichardN
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Re: One more newbie
« Reply #12 on: Mar 14th, 2008, 12:38am » |
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Hi Mike
Want to second BD's recommendation for OXYGEN.
Works for 70% of us to abort . . . should be your FIRST-line abortive. Many don't like to consider oxygen . . . stigma attached to having our little green-topped tanks around . . . you get over that REAL fast if it works for you. Cheap, effective, easy to use, minimal or no side effects. Don't ask for it . . . copy the 02 info available here and DEMAND it!
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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