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The_CHosen_One
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Please help???
« on: Feb 15th, 2006, 2:33am »
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I have been a long term sufferer of both CH AND CPH.  I have 10-12 CPH attacks during an average day, and 2-3 CH attacks per night (not 1 long one, as it does dissipate for about 1-2 hrs in early morning hrs).  This is a chronic problem, as I have had this pain for almost 3 yrs straight, with 0 pain free days (I keep a log of times, intensity, activities before attacks, diet, weather, temp, BP,etc). I have tried every abortive and preventive medication my team of specialists can muster, all to no avail. I have even tried all pain meds, up to and including Methodone, with the exceptions of Lithium and Med. MJ. I have done alot of research on THC/cannabis, and I was wondering if anyone on here has used or is using MMJ as a "successful" pain releiver, and if so, in what form (smoked, vaporized, liquid, ingestion)? Please help...I have been at the end of my rope for sometime...
 
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Re: Please help???
« Reply #1 on: Feb 15th, 2006, 3:30am »
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Cannabis, from my experience, will only increase the duration and intensity and it will bring on a hit.  It is a vasodilator, so it is not recommended for CH.
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Re: Please help???
« Reply #2 on: Feb 15th, 2006, 7:10am »
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More than one person has reported trying cannabis to relieve cluster pain. Gave them one helava headache.
 
Why haven't you tried lithium? It is a common med to fight clusters either by itself or with other meds such as verapamil.
 
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Re: Please help???
« Reply #3 on: Feb 15th, 2006, 7:52am »
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Have you tried Indocin/indomethacin for the PH?
Research dictates that it will be near 100% responsive to it.
 
As far as CH goes, keep trying to find your cocktail or you could try to go med free and bare knuckle it.
 
I am attempting that.
 
I can empathize with your multiple headache types.
 
I have Clusters and I get idiopathic stabbing headaches aka icepiks.  
 
I will have 2-3 Clusters per day and I will have days where I literally have thousands of fucking "zaps" throughout my skull.
 
The clusters actually seem more tolerable as I have decreased my meds.
 
The icepiks are back as I came off indomethacin but even they do not come every day.
 
It's a personal decision but one that can be made based on the proper research, knowledge of your own body and a good doctor!
 
Best,
 
Eric
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Re: Please help???
« Reply #4 on: Feb 15th, 2006, 9:21am »
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Hi Chosen,  
 
I too have multiple types of HAs. I ALWAYS get a tension headache, every time a CH kicks in. I think my body just tenses up when they come on, which cycles the tension HA.
 
Anyway, one question is that I didnt see any mention of O2 used as an abortive. While it can be very effective, it has to be used correctly in order to work. (see links to left)  The nice thing is that there are no real side effects, and no conflicts with any other drugs in the system.  
 
I am using an herb called Kudzu, which in the last week, has reduced the intensity of the attacks by a huge amount. It seems, (although it is a little early yet to say for sure) that it is also reducing the number of hits, or maybe it is reducing the hits enough that I am not noticing them.  
 
I have read about RC Seeds, but I dont have guts enough to try them. To me it seems that I am drifting over to the "druggie" side of the house. This is not meant as dispagement to those using them, just that I cannot change my nature enough to take them. (ok, yes you can call me square)  Undecided
 
 
Dragnlance
« Last Edit: Feb 15th, 2006, 9:27am by Dragnlance » IP Logged

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Re: Please help???
« Reply #5 on: Feb 15th, 2006, 9:44am »
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on Feb 15th, 2006, 9:21am, Dragnlance wrote:
Hi Chosen,  
 
 
I have read about RC Seeds, but I dont have guts enough to try them. To me it seems that I am drifting over to the "druggie" side of the house. This is not meant as dispagement to those using them, just that I cannot change my nature enough to take them. (ok, yes you can call me square)  Undecided
 
 
Dragnlance

 
that's downright absurd...
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Re: Please help???
« Reply #6 on: Feb 15th, 2006, 9:48am »
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on Feb 15th, 2006, 9:44am, vig wrote:

 
that's downright absurd...

 
I have to agree.
 
Think about the medications that are incorrectly perscribed to us.
High doses of inappropriate narcotics (not fentynl) such as percs and vics that risk us not only continuing to have CH pain but now we may become addicted and suffer through withdrawl.
 
So in regards to such statement Lance , really read up on it prior to passing judgement like I once did when I first joined these ranks.
My only reference was college partying and not the way that it is used in sub-trip medicinal ways that have been developed and are being studied for treatment.
 
There ya go my friend!
 
E
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Re: Please help???
« Reply #7 on: Feb 15th, 2006, 10:35am »
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*Smiles*
 
I told you to call me square.  
You should note that I take no other meds at this time, just Kudzu.  
 
Also RC Seeds have been used for the Hallucinogenic properties, going back to the days of the Aztecs. The same can be said of Opium, as well as Marijuana, and other plants that have properties like this.  
 
This was not meant to be anything other than a passing statement about how I personally feel about certain things.  
 
I should mention that I brought it up, because it is generally noted here that it is a viable alturnative to people when nothing else seems to work.
I didn't say it was wrong or right.  Had I felt it was wrong, I would never have brought it up.  
 
I posted it so that it is known that there are also other things that may help. Maybe should have kept the personal remark out of it, but the statement was there to indicate that I have no personal experience with it or likely to. Thats all.
 
Dragnlance
« Last Edit: Feb 15th, 2006, 10:38am by Dragnlance » IP Logged

The_CHosen_One
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Re: Please help???
« Reply #8 on: Feb 15th, 2006, 11:18am »
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on Feb 15th, 2006, 7:52am, E-Double wrote:
Have you tried Indocin/indomethacin for the PH?
Research dictates that it will be near 100% responsive to it.
 
As far as CH goes, keep trying to find your cocktail or you could try to go med free and bare knuckle it.
 
I am attempting that.
 
I can empathize with your multiple headache types.
 
I have Clusters and I get idiopathic stabbing headaches aka icepiks.  
 
I will have 2-3 Clusters per day and I will have days where I literally have thousands of fucking "zaps" throughout my skull.
 
The clusters actually seem more tolerable as I have decreased my meds.
 
The icepiks are back as I came off indomethacin but even they do not come every day.

 
Well, for starters, Indo actually seemed to make the attacks worse. 2nd, I DID try to bare knuckle it w/o meds for 3 months. During that time, I writhed in pain almost 24/7, unable to lie down or sit up for more than 5 minutes at a time. By the 3rd month, the pain was so intense, I actually had a stroke caused by High BP. That quickly put me back on meds. I tried O2, 15 liters/minute for 15-20 min at onset for abortive, which seemed to help for about 2 months, but then it lost its effectiveness. As far as lithium, my doctors tell me that preliminary tests show that I may be allergic to Lithium, so they're afraid to try it. 2 of them have told me I should consider self medicating w/ cannabis,  stating that cannabinoid receptors in the brain can block the pain. They think vaporizing will all but eliminate the "Harmful" side effects, but to try at my own risk. I am open to ANY other suggestions.
 
Sincerely,
The CHosen One
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Re: Please help???
« Reply #9 on: Feb 15th, 2006, 11:26am »
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http://www.headachedrugs.com/archives/cph.html
 
Here is a quote from Dr. Robbins who is a world reknowned HA guru.
 
Quote:
CPH is almost always relieved by indomethacin (Indocin). If indomethacin does not help, the diagnosis of CPH is in doubt (although it still could be CPH).

 
I don't know what to tell ya my friend, however I will try my hardest to hook you up with info.
 
Regards,
 
Eric
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Re: Please help???
« Reply #10 on: Feb 15th, 2006, 11:43am »
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Have you tried Kudzu?
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Re: Please help???
« Reply #11 on: Feb 15th, 2006, 11:44am »
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Hi One.
 
Like the others said mj Smiley (not me) has a worsening effect on CH at least.
 
Perhaps the clusterbusters can help. After 30 years I tried RC seeds and have had beyond fantastic results in controlling CH. following a long trial and error period.
 
 
 
 
 
on Feb 15th, 2006, 9:21am, Dragnlance wrote:

 
I have read about RC Seeds, but I dont have guts enough to try them. To me it seems that I am drifting over to the "druggie" side of the house. This is not meant as dispagement to those using them, just that I cannot change my nature enough to take them. (ok, yes you can call me square)  Undecided
 
 
Dragnlance

 
No offense taken Dragyn just concern.
But I have to say that is a very naive statement.
Personally I had not taken any medications in at least ten years prior to trying the seeds.
 
The Druggie side as you call it is a silly statement and does no help to those who are truly seeking help.
The RC seeds are far far less dangerous than virtually all the CH drugs prescribed by doctors.
 
The "druggie culture" I was once a member of consisted of major amounts of differing "drugs prescribed by doctors". I was doped up, dumbed up, stoned, and baffled. All the while having CH.
 
There is a simple treatment that works for many who would have never considered these routes untill clusterbusters. That is LSA.
 
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Re: Please help???
« Reply #12 on: Feb 15th, 2006, 12:49pm »
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Point taken and apologize for the wrong choice of words.  
 
I did honestly bring it up on the board as an offer of an alternative that could be taken, even if I personally dont have the nerve to try it. I have read a lot on them, and have noted that many people that have tried everything else under the sun seem to have good luck with them.  
 
I would not have brought it up if i felt it was harmful or otherwise illegal.    
 
wrong choice of words bites me again... ah well..
 
*chuckles ruefully*
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Re: Please help???
« Reply #13 on: Feb 15th, 2006, 1:19pm »
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Look in the archives for treatment under shrooms as in the kind that make you hallucinate.  They have performed miricles for many and given pain free time in little and large quantities.  Check out the clusterbuster website.  It is a blessing.  That is the alternative route I would go if I were in your shoes.  They are illegal and you will have to pray on if you want to go that route but it should work for you as it has for many.
« Last Edit: Feb 15th, 2006, 1:20pm by Karla » IP Logged

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Re: Please help???
« Reply #14 on: Feb 15th, 2006, 5:06pm »
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Hi there, CHosen one!
 
Welcome to ch.com! Smiley
I'm so sorry that you're hurting... Sad
I'm glad that you've found your way here.
 
I've been "lucky" to have lots of different kinds of HAs, not just ch. My Ch went into remission after trial and error with lots of preventatives and pain meds. Verpamil 600mg/day helped me and Maxalt rabitabs (the kinds which melt on your tongue, relief is quick one).  
 
Naturally we're all different. I hope that you'll find treatment which works for your ch. I once killed ch hit with ice cream! I ate it for comfort, but it worked. Once, but still... The best tasting med I've ever had! Smiley
 
Best wishes & PF times asap,
Sanna
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