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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Thank you for the Suggestion
        
(Message started by: purpleydog on Dec 11^th, 2005, 11:19am)

Title: Thank you for the Suggestion
Post by purpleydog on Dec 11^th, 2005, 11:19am

I was chatting with a friend of mine the other night, when he brought up cannabinol, the active ingredient in marijuana, and suggested I take it for my CH. He said I should ask my doc for it. I thanked him for the suggestion, and said I hadn't seen any research on it. He asked if I thought that me and another CH'er we both know knew the same things about CH and I said of course we do. We both know exactly what it is, exactly what it does, and exactly how it feels. After he told me our mutual friend had an open mind to new treatments, I told him all clusterheads were open to new treatments, because nothing worked for everyone.

He continued to push the cannabinol, and I continued to thank him for the suggestion. He said he had a book with about 40 herbs that worked for CH. I said they didn't work.
Except Kudzu.

I told him I belonged to this board, and if there was an herbal treatment that worked, I would know about it. He insisted my doc would know about it. I said I know more about CH and treatments for it than most docs my own included. I again thanked him for the suggestion and said to please drop the subject. He said I was closed minded. I told him I hadn't seen any research on this, and I wouldn't take it to my doc without research, nor consider it without any research. And I won't go to my doc and ask to try something just because I "heard" it somewhere, let alone from someone who knows nothing about CH.

I understood his concern, and that he was only trying to help, but I finally told him that until HE had clusterheadaches, and knew exactly what they are, he was in no position to advise me medically for them, and if he thought I was closed minded then so be it. By then, I was very frustrated because he kept pushing it, and wasn't listening to me.

He told me I had concrete thinking. He couldn't understand why I wouldn't take this to my doc, because my doc would certainly know. Said he had to wonder why I was resisting his suggestion. Why I wouldn't consider it. Again, I told him I would consider it... IF I had research on it, and I don't have any research, and he couldn't provide me with any.

I've never discussed my CH with him, he knows I get them, but I've never had a discussion with him, or anyone else outside of this board, or my doctors. People don't understand, and I don't have the patience to try to explain it to them. And this is exactly why. if I try to explain, they think they know the answers. It gets old, as I'm sure you all know.

I finally told him I was logging off and to have a good evening, then I did. I was a bit pissed off, and it took me awhile to calm down. I know he was only trying to help, but it's funny how you can have a condition, and people think you don't know anything about it. And they do.

Sorry for the long post, but this is still on my mind 4 days later. It just reinforced my decision to not discuss CH with anyone who doesn't get them. It's like talking to a wall.

Chris

Title: Re: Thank you for the Suggestion
Post by E-Double on Dec 11^th, 2005, 11:57am

We should just walk around with a business card that states the facts

Title: Re: Thank you for the Suggestion
Post by BobG on Dec 11^th, 2005, 12:54pm

The subject of using marijuana as a treatment has come up many times over the years. The consensus has always been the same.

1. It will NOT help with cluster pain.

2. It WILL trigger attacks.

And for what it's worth, and this is just my opinion, since your friend was pushing so hard for you to try marijuana and refused to reason with you, I'd say he has a pot habit and is trying to drag you down to his level to justify that habit.

Title: Re: Thank you for the Suggestion
Post by purpleydog on Dec 11^th, 2005, 4:52pm

It's not the marijuana itself, but the active ingredient in it, the chemical, apparently it can be prescribed. He's of the mind that it can help with a lot of things. I've seen the discussions of the leafy herb not being much help, and it's not something I would try.

It just reminds me of when years and years and years ago, when Coca Cola had it's active ingredient, and they would say it would cure anything. He's talking of a treatment, says it's good for a lot of things. Neurological problems. What, exactly, he couldn't tell me, except he did say it is a relaxant. Not something I need with CH especially, and I already have something else I use for that and it works fine for me. I just need some concrete research on it.

Title: Re: Thank you for the Suggestion
Post by lionsound on Dec 11^th, 2005, 4:55pm

Hi Chris :)

Good for you for standing your ground and logging off.

It is frustrating as all get out when people do that.

Title: Re: Thank you for the Suggestion
Post by BarbaraD on Dec 12^th, 2005, 7:22am

We've discussed the effects of Mary Jane here a lot (go back to the archives). Consenus - it doesn't work for CH.

And yes, some of us have tried it (some of us have tried EVERYTHING mentioned). I found some in Jamacia that stopped a CH in it's tracks, but couldn't bring it back to the states so I can't vouch for the long term use of it. The local stuff did nothing for me.

Over the years, I've listened to about everything and tried most of it. Hot peppers, banana peels, needles stuck in my head, reflexology, etc. They didn't work, but gave me something to do at the time. I don't write off anything anyone tells me - they're only trying to help.

The only time I ever got pissed off was during an IRS audit when I got hit and the "all knowing auditor" told me her son had "those kind of headaches" and he just ran hot water over his feet and it cleared them right up! I threw a file at her and left, went back to the office and wrote a letter to a senator that got her butt fired! And got me a new audit which I won! Oh, I did try the hot water on the feet - it didn't work.

Hugs BD

Title: Re: Thank you for the Suggestion
Post by chewy on Dec 12^th, 2005, 7:50am

I would keep a good distance from that "friend". His agenda sounds like it goes far beyond helping with your CH.

Marinol has a lot of medical usages. CH isn't one of them

Title: Re: Thank you for the Suggestion
Post by purpleydog on Dec 12^th, 2005, 12:43pm

on 12/12/05 at 07:22:44, BarbaraD wrote:

I don't write off anything anyone tells me - they're only trying to help.

The only time I ever got pissed off was during an IRS audit when I got hit and the "all knowing auditor" told me her son had "those kind of headaches" and he just ran hot water over his feet and it cleared them right up! I threw a file at her and left, went back to the office and wrote a letter to a senator that got her butt fired! And got me a new audit which I won! Oh, I did try the hot water on the feet - it didn't work.

Hugs BD

That made me laugh, Barb. I've been trying to research this ever since he told me, but I'm not finding anything for CH or headache pain. I Do appreciate the fact he is just trying to help, and his heart is in the right place, but with this...he couldnt understand the research necessity. I've put enough dangerous drugs into my system because of these damn things, had pemanent changes to my internal organs from one, and am not about to try something I know nothing about.

Ahhhhh, will there ever be a permanent fix? Probably not in my lifetime...

Title: Re: Thank you for the Suggestion
Post by Kevin_M on Dec 12^th, 2005, 8:08pm

on 12/11/05 at 11:19:37, purpleydog wrote:

he brought up cannabinol, the active ingredient in marijuana,

suggested I take it for my CH.

He said I should ask my doc for it.

He asked if I thought that me and another CH'er we both know knew the same things about CH
After he told me our mutual friend had an open mind to new treatments,

He continued to push the cannabinol,

He said he had a book with about 40 herbs that worked for CH.

He insisted my doc would know about it.

He said I was closed minded.

I was very frustrated because he kept pushing it, and wasn't listening to me.

He couldn't understand why I wouldn't take this to my doc, because my doc would certainly know. Said he had to wonder why I was resisting his suggestion. Why I wouldn't consider it.

I don't have any research, and he couldn't provide me with any.

(read progression of bold print only)

on 12/12/05 at 07:50:39, chewy wrote:

I would keep a good distance from that "friend". His agenda sounds like it goes far beyond helping with your CH.

Agree with chewy here.

It sounds like he's planning: See if you can get a script for it with your CH, if it doesn't work, keep getting it anyway and give it to me.
It's a string of self-centered user rationalization.