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De_Minimis
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Hi. Wish I was elsewhere
« on: Mar 30th, 2005, 2:49pm » |
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Been lurking for a while. Thought I'd say hi.
39 and I think my first cluster was at 23, although I've had lots of headaches since fifth grade. Wrongly diagnosed for many years until I went to a Nurologist three years ago. Not sure if I'm atypical, but my cycles are always late Winter (until this year as its now Spring), last for up to eight weeks, and only come every two-three years and is always right hemisphere. I guess I should be happy about that (the multi-year remission), but hard to be happy with an egg beater going off in your head. Last bout was in '02 and here it is again, but running about one month late.
Last night they came like clockwork (every 90 minutes of sleep). Had four. First was a killer, two and three not as bad, forth, a little more intense, but only 10 minutes! The forth was weird in that it was very painful, then instantly it stopped. By instantly, I mean instantly.
Of course, my nuero doc is on vacation. I went through an old, expired pred prescription (9 days: 3-20mg,2-20mg, 1-20mg). Since I've carried these around in my shaving kit since filled a couple of years back, they tasted like Obsession. Could have tasted like horse crap and I would have taken them. Pred is done and Depikote (first time on this) is on board, but not seeming to work as my bouts are now increasing. Read here about extending Pred, so I have a call into my PCP for a new pred script.
I read somewhere that we will eventually grow out of these damn things. Anybody else know of this and when? I'm a prosecutor and you can just imagine how hard it is to conduct a criminal trial when a CH hits (yes, I get some during the day, but nothing like at night). Oh yea, for those keeping track, looks like I have sleep ap, still smoke (though working on that), head injury as a baby (broken skull -car accident) and wash my hands one-hundred times a day because they smell like my mother. Ok, just seeing if anyone was paying attention.
Guess I'll be seeing you all around for a while. Can't wait to break this friendship though. Oh Yea, I'm a bad speller, but that is a sevant talent anyway.
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| « Last Edit: Mar 30th, 2005, 2:56pm by De_Minimis » |
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De Minimis
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E-Double
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Re: Hi. Wish I was elsewhere
« Reply #1 on: Mar 30th, 2005, 3:16pm » |
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Well.....you're here so.....
This is a great resource to know like the back of your hand
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.
Life goes on ya just need to live it!
Took me a long time to stop questioning the "Beast" and to get motivated to start living.
I'm a Behavior analyst/Special education teacher and run home schools for developmentally disabled toddlers.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)
Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.
For the night visits many have had luck with using melatonin...9-12 mg has helped some regain their nights!
Wishing you the best and if ya need some help with that hand washing compulsion I can help you with that too 
Best,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Hi. Wish I was elsewhere
« Reply #2 on: Mar 30th, 2005, 3:21pm » |
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Welcome,
Check out the thread about Kudzu. You might be a good candidate (episodic and not using too many other med's) to have some success. It'll allow you to stay on your toes while your medicated as there are no side effects (although some have claimed it made them a little "gassy".
There are some folks that are having success with it and you can get going today, just stop by a GNC or something similar on the way home tonight. Call them first ot make sure they're stocking it. You'll be better finding at the "hippy-sort" of health food, herbal stores than a shiny GNC.
Good one about the hand-washing!!!!! Had me going. Although, even thinking that one up might put you in a "special group".
Scott
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seasonal boomer
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thudpucker
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Re: Hi. Wish I was elsewhere
« Reply #3 on: Mar 30th, 2005, 3:44pm » |
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Let me put in a plug for melatonin.
My ch are eposodic, running from October or so until April or so, almost exclusively at night, occur like clockwork at 90-minute intervals, and last from 15-30 minutes (except on rare occasions when they'll drag on for maybe an hour and then decrease to heavy shadows).
I've been using only melatonin since November of last year this cycle and have been pain-free except for one two-week bout when I also had a bad respiratory virus.
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De_Minimis
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Re: Hi. Wish I was elsewhere
« Reply #4 on: Mar 30th, 2005, 4:08pm » |
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The one thing I'm learning more than any other at this site is that I've got it pretty good as compared to many others. Eight-week episodes every two to three years sounds damn good, in fact, compared to what some of you go through. That's some pretty good medicine in and of itself. Thanks.
One other thing, I thought this was strictly a male affliction, but from this site, it appears that is not the case. Well, at least we still have that whole prostrate thing to ourselves.
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De Minimis
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De_Minimis
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Re: Hi. Wish I was elsewhere
« Reply #5 on: Mar 30th, 2005, 6:09pm » |
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Well, it looks like our problem is based upon poor Serotonin production. If so, shouldn't serotonin stimulants such as chocolate help us (not with weight or complexion, but with the headaches)? Then again, I've read that chocolate can trigger migraines, so I don't know.
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De Minimis
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Gator
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Re: Hi. Wish I was elsewhere
« Reply #6 on: Mar 30th, 2005, 10:16pm » |
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Greetings Earthling!
I liked the handwashing thing. LOL Every three years or every three hours - it sucks any way you cut it. Of course your neuro is on vacation. It wouldn't be interesting if everything was easy. I would do some research into the side effects of pred (some nasty shit) and definitely tell the doc you already did your own pred taper.
There are many theories about what causes CH. The one that the big guns in CH research have zeroed in on is an abnormality in the hypothalamus which controls out circadian rhythms. Which might explain why you can almost set your clock by the attacks.
I'm sending you some info via IM. Some may duplicate what you have been given, but most of it should help to one degree or another.
Welcome to the asylum.
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Redd
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Re: Hi. Wish I was elsewhere
« Reply #7 on: Mar 30th, 2005, 10:41pm » |
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Quote:One other thing, I thought this was strictly a male affliction, but from this site, it appears that is not the case. Well, at least we still have that whole prostrate thing to ourselves.
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Appearances are usually very different from reality dear.
Anyway, welcome to Clusterville....don't just hang out while in cycle dude...there are some of us chronics that sure could use the support year in and year out.
Redd
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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RichardN
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Re: Hi. Wish I was elsewhere
« Reply #8 on: Mar 30th, 2005, 11:06pm » |
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02
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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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BlueMeanie
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Re: Hi. Wish I was elsewhere
« Reply #9 on: Mar 30th, 2005, 11:28pm » |
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Welcome Minimis,
Sounds like you've got a good attitude about living with these CH's. That's a very good start. Being Episodic, if I where you I'd ditch the Pred and try Verapamil instead. Prednisone is NOT a long term drug and can screw ya up from what I hear.
Check out the 02 info to the left of this page. Doesn't work all the time but definately worth a try. Have you tried Imitrex ? Check with your doc, it works wonders for most of us. Read the medical info to the left of the page also. Lots of good resources and possibilities.
Once again, welcome.
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Kevin_M
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Re: Hi. Wish I was elsewhere
« Reply #10 on: Mar 31st, 2005, 12:07am » |
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on Mar 30th, 2005, 2:49pm, De_Minimis wrote:| Depikote (first time on this) is on board, but not seeming to work as my bouts are now increasing. |
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Meanie always has a good message.
If the Depikote seems ineffective, consider reassessing this part of treatment. I gave it a month a long time ago and said WTF to the neuro.
My early episodes weren't my worst, so as Meanie mentioned get hooked up with an abortive for now, with the Depikote line of defense, it will be handy to have. (and yes, verapamil works for me too) Don't be shy about telling the doc about results from prevents. Cluster treatment from docs is not universal knowledge among them. He may need brushing up, if he is interested. It is a difficult challenge for inexperienced docs which may not be to your advantage. Inquire maybe about his hands on previous cluster experience.
I went to a neuro set up in an affluent neighborhood at first, under the impression he has had successful solutions for people. Thankfully he was quick to define this obsure affliction but treating was another thing. He was eager to pass the buck on me throwing up his hands, out of ideas. The scripts he wrote back then were fiorcet and Depikote. I learned better from this board and moved on. My other regular doc was liberal with the imitrex after LISTENING to me, and I told him of its success, but the prevent was elusive, difficult for him to understand or make sense out of it seemed. An experienced cluster doc that has gotten fair clusterhead feedback is worth his weight in gold. Get your bearing here.
Kevin M
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| « Last Edit: Mar 31st, 2005, 8:21am by Kevin_M » |
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De_Minimis
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Re: Hi. Wish I was elsewhere
« Reply #11 on: Apr 1st, 2005, 6:18pm » |
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Thanks all for the info. Wife is off to pick up some Meletonin and Kudzu (Kudzu - yea, right. I live in a back-water, we still get the Ed Sullivan show live, kind of town. If Wal-Hell doesn't have it, I ain't gonna get it).
Just made the mistake of taking a nap. Won't do that again.
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De Minimis
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jokrs2
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Re: Hi. Wish I was elsewhere
« Reply #12 on: Apr 1st, 2005, 7:11pm » |
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First of all welcome to the board. If you can't find the kudzu at your local hole in the wall, you can order it from a variety of online stores such as www.vitacost.com or www.iherb.com just to mention 2. I personally take "Planetary Formulas Kudzu Recovery" and follow the dose instructions on the bottle. It has worked well for me and I have been chronic for over 20 years and I noticed it helping within 24 hours. Check for additional advice on weening off other meds before moving to kudzu. Regards, Joe
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Given strength, courage & a sound mind!
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don
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Re: Hi. Wish I was elsewhere
« Reply #13 on: Apr 1st, 2005, 8:59pm » |
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Quote:
Sure as hell wouldn't want to be the defendant when you get hit.
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De_Minimis
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I Eat Glue!
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Re: Hi. Wish I was elsewhere
« Reply #14 on: Apr 2nd, 2005, 3:08pm » |
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on Apr 1st, 2005, 7:11pm, jokrs2 wrote:| First of all welcome to the board. If you can't find the kudzu at your local hole in the wall, you can order it from a variety of online stores such as www.vitacost.com |
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Thank you very much. Its now bookmarked and I placed an order for the goodies. Weird. Most online ordering I do is for my VW restoration project or motorcycle parts. I didn't have to have these items delivered to the office to avoid conflicts with the wife.
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De Minimis
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don
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Re: Hi. Wish I was elsewhere
« Reply #15 on: Apr 2nd, 2005, 7:13pm » |
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Quote:| I thought this was strictly a male affliction |
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It is.
All the wimmins here have meegraines or bad sinuses. We let em stay hoping they will get naked.
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Grandma_Sweet_Boy
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Re: Hi. Wish I was elsewhere
« Reply #16 on: Apr 2nd, 2005, 7:18pm » |
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on Apr 2nd, 2005, 7:13pm, don wrote:
It is.
All the wimmins here have meegraines or bad sinuses. We let em stay hoping they will get naked. |
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Bite Me! 
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