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(Message started by: Robert_C. on Jul 31st, 2004, 6:27pm)
Title: Canabis
Post by Robert_C. on Jul 31st, 2004, 6:27pm
A few friends of mine keeps trying to convince me to try canabis  ;) for the pain.  I've been chronic for 9 months now and desperate to try anything, short of cutting my head off.  Medicinal pot is legal here but I'm a bit shy to ask my doctor for a joint.  [smiley=smokin.gif] [smiley=oops.gif]

Anybody ever tried it?
Title: Re: Canabis
Post by E-Double on Jul 31st, 2004, 6:44pm
Some say that it actually makes it worse.
I haven't sparked when in cycle though so i can't talk from experience.

I guess that like everything else some will find things that work and some will disagree or have the opposite experiences.

Either way Can't hurt to try.....

Or can it?! ;)

Eric
Title: Re: Canabis
Post by Robert_C. on Jul 31st, 2004, 7:07pm
Thanks Eric.

I don't think I'll try it.  The way it's going, my neuro probably thinks I'm a drug addict already.  He has a problem with giving me anything stronger then Percocet.  And even with that, I need to fight with him for each refill.  What an  [smiley=moon.gif]

I think it's time so look for another one of those so-called 'specialist'. [smiley=gocrazy.gif] [smiley=hurl.gif]
Title: Re: Canabis
Post by E-Double on Jul 31st, 2004, 7:41pm
What meds are ya taking other than the narcotics?
Narcs always made me feel way worse!!
Not only stoned ( which in the past I didn't mind, but certainly not during an attack) but got massive rebound HA's.

I'm pretty new to the meds but there are pleanty that help us.
I'm on Verap. & have been using Imitrex to abort. and good ole O2


Take care.

E

dying for the cycle to end so I can have a damn beer. Lousy summer without. lol
Title: Re: Canabis
Post by IndianaJohn on Jul 31st, 2004, 8:00pm
Hi everyone,

When I used canabis it neither hurt nor helped.  I was just stoned and in pain.  If it helps deal with it so be it.  But in my case it never relieved any pain at all.

best wishes

John
Title: Re: Canabis
Post by UN_SOLVED on Jul 31st, 2004, 8:11pm
Could make headaches worse. Could trigger an attack. Will NOT help with clusters. May help with anxiety / stress after or before an attack ......  so I've heard  ::)

Unsolved
" Whatever we can do to keep some sanity is a worthy treatment "
Title: Re: Canabis
Post by Kris_in_SJ on Jul 31st, 2004, 9:04pm
Ditto to Un_Solved.  Most clusterheads say it triggers a HA.  

I would question any kind of narcotic, actually.  Tried most of them before I was actually diagnosed - nothing worked on the CH.  When the HA was over however, I felt pretty good (when I wasn't throwing up).

Kris
Title: Re: Canabis
Post by Robert_C. on Jul 31st, 2004, 10:07pm
E_Double,

I'va tried 5 or 6 different treatments, including vera, Lithium, Endocin, O2 and some other that I forget right now.  Prednisone use to work when I was periodic but now it doesn't do a thing as a chronic.

I HATE having to take narcotics (although it does feel good sometimes), but my neuro gave up on me and just wants to do pain management.

Until this week, I didn't know much about anything regarding CH (aside from living it), but I've already contact my doctor to try a few things that he never proposed to me.  Like Imitrex injection for those level 8 to 10 attacks or even melatonin to help me sleep better (still going on 3-4 hours a night).

Will let you know how it goes.

Robert
Title: Re: Canabis
Post by UN_SOLVED on Jul 31st, 2004, 10:37pm

on 07/31/04 at 22:07:30, Robert_C. wrote:
Prednisone use to work when I was periodic but now it doesn't do a thing as a chronic.

my neuro gave up on me and just wants to do pain management.


Prednisone or some other steriod like SOLU Medrol (IV only), DECADRON, or MEDROL DOSE PACKS should work temporarly if given in big enough doses [ie. 60 - 80 mg Prednisone per day to begin, then taper)

PLUS


on 07/31/04 at 22:07:30, Robert_C. wrote:
my neuro gave up on me and just wants to do pain management.

That is just terrible. If he has not tried LOTS of medications to try and prevent or help the pain ... get rid of him quickly !

get informed:

Just a partial list of CH meds:

Triptans:
December 28, 1992: sumatriptan (Imitrex®, Imigran®) injections
June 1, 1995: sumatriptan (Imitrex®, Imigran®) tablets
November 25, 1997: zolmitriptan (Zomig®) tablets
August 26, 1997: sumatriptan (Imitrex®, Imigran®) nasal spray
February 10, 1998: naratriptan (Amerge®, Naramig®) tablets
June 29, 1998: rizatriptan (Maxalt®) tablets and rizatriptan orally dissolvable (Maxalt-MLT®) tablets
February 13, 2001: zolmitriptan orally dissolvable (Zomig-ZMT®) tablets
May 7, 2001: almotriptan (Axert®) tablets
November 8, 2001: frovatriptan (Frova®) tablets
December 27, 2002: eletriptan (Relpax®) tablets

Oxygen (100 % High Flow 10 - 15 ml/min w/ a non- rebeather mask)

Verapamil ( Brand name(s): Calan; Calan SR; Covera-HS; Isoptin; Isoptin SR; Verelan)

Lidocane

Lithium

Topamax

Depakote

Neurotin

Keppra

Lamictal

Olanzapine (Zyprexa)

Methergine

Indomethacin (100 % effective for CPH)


Ergotamines:
(COMMONLY USED BRAND NAMES IN THE US)
Belcomp-PB
Cafergot
D.H.E. 45
Ergocaff-PB

Ergomar
Migergot
Migracet-PB
Wigraine



READ THIS FOR MORE INFO FROM CH.COM (http://www.clusterheadaches.com/about.html#TREATMENT)

There's a ton of meds to try if your current treatment plan isn't working.


Nerve blocks:
Greater Occipital Nerve Block
Sphenopalatine Ganglion Nerve Block
Facet Nerve Block
Radio frequency Generator (RFG)

This list goes on if you really need it.

Keep looking for something that works !

Goodluck,

Unsolved
Title: Re: Canabis
Post by don on Jul 31st, 2004, 11:06pm
First off. How are you defining "chronic"? That term is being used pretty loosely as of late.

Secondly. Why are you using narcs to treat CH? Fighting him for refills? Tells me you are using them regularly. Caution Will Robinson.

Thirdly. 9 out of 10 sufferers report that using cannibas elvates the pain of CH to the point of not being able to devour the third bag of Fritos.
Title: Re: Canabis
Post by UN_SOLVED on Aug 1st, 2004, 1:32am

on 07/31/04 at 18:27:13, Robert_C. wrote:
 I've been chronic for 9 months now


There is no such thing as chronic for 9 months

Unsolved
Title: Re: Canabis
Post by Superpain on Aug 1st, 2004, 2:31am
Agreed... 9 months after a yr of ha's?
I'm just getting warmed up after 9 months...
Percocet is NOT effective treating cluster's.
Your doctor IS an ass...

You need to read up and get a new doc.
9 months ain't chronic...
Narc's don't help...
And as said above, pot will many times trigger, but will never "help" a cluster.
Title: Re: Canabis
Post by miapet on Aug 1st, 2004, 4:16am
I'm only going to respond to the Melatonin part . . .in the US it's over the counter . . .you can get it at a drugstore, grocery store, or health-food store . . . and it seems to help a lot of people.  You might want to look next time you're at the store?
*positive light and energy*
miapet
Title: Re: Canabis
Post by Robert_C. on Aug 1st, 2004, 1:55pm
Un-Solved,

What does it take to become a chronic?

I admit that I diagnosed myself because,obviously I haven't found anybody to do it.

I've had this for about 20 years without knowing.  Coming and going, thinking that I probably drank to much or just had bad food.  I even saw a shrink at some point, thinking it was emotional.  If you think that narcs messes you up, try anti-depressants.

Anyway, last November, it just started and wouldn't go away.  The first 3 months weren't so bad, I was averaging 5 or 6's with some peaks at 8 or 9 a couple of times a week.  It's been increasing since then.  Now I average 8 on a good day and it's a good week if I don't have to go to the E.R.  The shadows are constant, 24/7.

The only thing the Perocet does, is giving me 10 or 15 minutes of relief in between and I'm so freakingly thankful when it happens ::)

I don't know if people call it chronic or not but I just use the term so everybody would understand.  I may be a newby in knowledge about CH and medication but you know that it doesn't mean that it's less painful.

Thanks for the meds list by the way.  I have tried at least 1/2 of them already and I'll look into the other ones.

Superpain,

How long will it take to graduate?  ;)

After reading all of this (and by the way, thank you guys),  I think I have been a bigger ass then my doctor.  I should have done this a long time ago.  But I'm over my denial phase now and it's time to fight back.

Beam me up, Scotty!
Title: Re: Canabis
Post by Robert_C. on Aug 1st, 2004, 1:58pm
Miapet,

You're right, I've heard about it to.

Now I see the importance of keeping a log of all the meds I've tried, whant to try and hear about.

Thanks
Title: Re: Canabis
Post by don on Aug 1st, 2004, 3:31pm
Come this November, look back at your pain history.

If you have not had 30 consecutive pain free days, medicated or not,  from November 03 to November 04 then you are chronic.

Medications are no longer in the equation.
Title: Re: Canabis
Post by Robert_C. on Aug 1st, 2004, 7:16pm
Don,

I'm certainely on my way, but I'm not sure I want to graduate anymore.  Can I get my money back?[smiley=bigcry.gif]

But seriously, if medication is not in the equation anymore, tell me that there is something else?

Robert
Title: Re: Canabis
Post by kimh on Aug 1st, 2004, 8:16pm
Hi Robert,

If you are taking a lot of pain meds, it can be exacerbating your attacks.  First steps include weaning off the pain pills, and finding good abortive alternatives + an effective preventative .....doesn't that sound easy ;;D......
As for the cannabis, i tried it and would not recommend it for treating a cluster.
It's not fun what we have, and it's not fun trying to get control back, but ya gotta start somewhere.

After all is said and done........i'll share what has helped me the most:
Finding this place and being able to talk to people who understand first hand while also learning an incredible amount of valuable information regarding this illness.

Best luck to you and PF wishes
Title: Re: Canabis
Post by don on Aug 1st, 2004, 8:38pm

Quote:
But seriously, if medication is not in the equation anymore, tell me that there is something else?


What I meant was medication, or no medication, is not part of the diagnostic criteria. Doesn't matter if you are using meds or not.

I f you can not achieve 30 days PF in a year, you are considered chronic.
Title: Re: Canabis
Post by Robert_C. on Aug 1st, 2004, 8:51pm
Kihm,

I know I need take less but until I find an alternative, it's a no-no.  I'v tried and as little as the narcs do for me, it is greatly appreciated.  Isn't it wonderful when you have do things to yourself that you know are destroying some part of you? [smiley=smartass2.gif]

Tomorrow is Bash-the-Neuro day for me [smiley=hammer.gif].  I want to see if he really knows that CH doesn't mean Cry and Moan or Cash Money or ...

Enough sarcasm.

Thanks Kimh, it's seems that what helps you the most will do the same to me.  It's greatly appreciated.


Don,

Thanks for the specifications.  Although the meds are not required, it's awful to think that at some point I might have to live with it without medication (meaning for me, without hope to find something).

Even worst, that there are people out there who cannot afford medication that would help them.

>:(  Sorry about the downer...it's over now.

Tata

Robert
Title: Re: Canabis
Post by don on Aug 1st, 2004, 11:35pm

Quote:
it can be exacerbating your attacks


Some sufferers have reported that exacerbating vigirously will abort an attack.  8)
Title: Re: Canabis
Post by UN_SOLVED on Aug 2nd, 2004, 1:07am

on 08/01/04 at 13:55:50, Robert_C. wrote:
Un-Solved,

What does it take to become a chronic?


BAD LUCK !!


The IHS (International Headache Society) still has posted the criteria for defining 'clusterheadaches' and 'chonic clusterheadaches"  at -->  Upstate.edu (last revised 10/29/2002) (http://www.upstate.edu/neurology/haas/hpcldx.htm)

Also see "The World Headache Alliance" (http://www.w-h-a.org/wha2/index.asp)

It says ... "cluster headache which does not remit for a year or more, or which remits for less than 14 consecutive days within the year. Some 10% of patients have this type."

Unsolved

I've just heard of some others saying that the criteria has changed ... Didn't see the proof posted anywhere. Who knows ??

HOLD THE PHONE !! SEE THIS
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

IHS has changed the criteria ... guess they're trying to make more of us ??
Title: Re: Canabis
Post by BobG on Aug 2nd, 2004, 4:55am
The 30 days is continous.
Does that mean if you have (almost) daily attacks for 11 months then 30 days pain free that you have to start counting all over again?
Title: Re: Canabis
Post by Robert_C. on Aug 2nd, 2004, 7:55am
Depressing, isn't it BobG?

All  that hard work... :P

Thanks Un-Solved for that wonderful 150 pages documents full of medical definitions and data.  I think I'll print it so I can bang my head with it (sarcasms again). [smiley=smartass.gif]

More of us means more brothers and sisters?  More gifts at Christmas? [smiley=sayyes.gif]

Seriously,  I really appreciate all the information.  You've been at this longer then me it seems.

By the way, the Prednisone use to work when I was episodic (technically I still am, but you know what I mean) but it hasn't worked the last 2 times.  The first time, starting at 60mg a day, and the second time at 80mg (which I've been doing for 9 days now).  

I'm also a little scared of Prednisone, as it lower your immune system.  Makes you more vulnerable to other stuff (although, it does give me a little buzz).

Tata! ;;D
Title: Re: Canabis
Post by kimh on Aug 2nd, 2004, 8:43am
Mawnin Robert,

Happy Neuro-bashin.  Clusterheads relate.

As for the pain pills - i have been where u are and understand believe me.  It's just that i recall the worst cycles while using them.  Catch 22 syndrome....

-anyhow- i also used o2 10 years ago - had a tank delivered with this cute lil nose plug attachment.  It did nothing and soon ended up stuck in the closet collecting dust until i finally returned it... i have been using o2 as outlined per this site - it takes a bit of trial and error- but it is WORKING. :)  Mite wanna checkit out.

Hey Don?  Exacerbate me. ;;D  ...........if that's the case then i need ta git me some excerbation 8)

Sorry if this post bobbed and weaved.  I think it's genetic :)

Lata,
Babblin Betty
Title: Re: Canabis
Post by UN_SOLVED on Aug 2nd, 2004, 9:21am

on 08/02/04 at 04:55:34, BobG wrote:
The 30 days is continous.
Does that mean if you have (almost) daily attacks for 11 months then 30 days pain free that you have to start counting all over again?


LMAO !  Good question !!

I guess that would mean that you are NOT a chronic !! You didn't go a full year !
Title: Re: Canabis
Post by don on Aug 2nd, 2004, 9:49pm

Quote:
I guess that would mean that you are NOT a chronic !! You didn't go a full year !


So you lose. Or win. I'm not sure which.
Title: Re: Canabis
Post by Robert_C. on Aug 2nd, 2004, 10:33pm
Yeah...I think I'll try to be wining-whining-loser  [smiley=laugh.gif] [smiley=baby.gif] :'(


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