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Cluster Headache Help and Support >> Cluster Headache Specific >> I must advocate - we must advocate
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Message started by swiftlaw on Jul 25th, 2008 at 2:53pm

Title: I must advocate - we must advocate
Post by swiftlaw on Jul 25th, 2008 at 2:53pm
If cursing offends you - skip this post. It is a heartfelt outcry from me in the middle of a bad atack. No one really understands.

I have Cluster Headaches.  Many of you who know me know this fact.  I know that many people in my own life have been forgiving and tolerant of me, generally speaking yes, but more particularly when I am in a period of the headches.  In a “cluster” as we who know refer to that terrible time period. Trust me it is worse that you can ever imagine.
I realize today, as I am a home very aggressively treating these monsters, that you need to know about this.  You need to know that it is affecting your lives – it is directly affecting you.  
Affecting you - In as much as you may expect more from me that I can give - and in that I really don’t want you to know how terribly ill I am from this condition because it’s so dam important for me to look good to everyone –Tommy fucking Wicked!  My ass.
I may be letting you down severely by not letting you know how deeply I suffer from this - how my memory is shot – I have no sleep – that I pull my car over and scream in agony for 45 minutes - - that I get lost in my thoughts - can’t concentrate - then try to carry on as if I am OK - I am most defintley not OK.   No one who has Cluster Headaches is OK.   I try to seem like I’m OK -- like I can be a  guy who can carry his load and show up and contribute, I want you to know - and you need to know – I just fucking can’t.   I ‘m faking it.  I ‘m waiting for this to be over and it has been over 14 weeks this time through.
Imagine my wife how just awful this is. I cry for her.
I want you all to know that dealing with Cluster Headaches is much worse than the cancer I have or the heart disease. Much much worse. It’s too much
Fuck you if you are intolerant of me or those that I love in any way. Is my personality too big for you? Fuck you. Too sweet? Fuck you. Too loose? Fuck you - and each of you now and forevermore  if you can’t see the humanity I have for all of you. I speak the truth. I have so much to give to you all.  Almost 60 years of wisdom or mistakes call it what you will. You need to know. Everyone needs to know. That. This condition - this vascular headache - this trigeminal fucking neuralgia – this Cluster Headaches- is robbing all of us. Dramatically.
I am behind in all my endeavors.  I ask for a little more patience from all of you. This will pass I will get back in the saddle and rock all your fucking worlds again – just like you have come to expect from me.
Today I want you to know about Cluster Headaches and see how badly it hurts all of us.
Take 7 minutes and see my brother Antonio as he has a cluster attack.
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Title: Re: I must advocate - we must advocate
Post by midwestbeth on Jul 25th, 2008 at 3:20pm
We can all relate swiftlaw.

Hope you are back to rocking everyone's world real soon.

pf vibes and wishes to you.

Beth

Title: Re: I must advocate - we must advocate
Post by andrewjb on Jul 25th, 2008 at 4:40pm
rave on swiftlaw, hope this passes quickly. andrew.

Title: Re: I must advocate - we must advocate
Post by Brew on Jul 25th, 2008 at 4:54pm
I hope you get to enjoying life again sometime soon.

Title: Re: I must advocate - we must advocate
Post by ajarmstrong on Jul 29th, 2008 at 1:03am
Every word you say is so true!  Don't ever apologize for saying what you feel.  Curse words and all!!!!

Title: Re: I must advocate - we must advocate
Post by BarbaraD on Jul 29th, 2008 at 6:52am
The bad part Swiftlaw is that WE DO UNDERSTAND every word you're saying.

Hugs BD

Title: Re: I must advocate - we must advocate
Post by Guiseppi on Jul 29th, 2008 at 10:57am
Yeah, sadly we do understand. Your frustration at those that do not comes through loud and clear. "Oh I've had bad headaches before I know what you mean just try not to get stressed!" They mean well.... ;)   Hoping you catch some slack time soon.

Guiseppi

Title: Re: I must advocate - we must advocate
Post by swiftlaw on Jul 29th, 2008 at 2:39pm
Thank all of you for responding to my rave !  I had almost given up and wrote that after and maybe a little during, a pshedylic experience. Yes - I made the tea from the magic mushrooms.  I have slept through the night every night since. Here's what happened. I took the tea early in the morning on Friday on an empty stomach. I thought it would leave me alone for the morning and I could do this and be past it by lunch.  Wrong.  I got really high and a little scared during the first 40 minutes. I think it was because I did not know how high I would get and the rush was pretty intense. I called my wife to come home from work at noon and she did and I was fine by then. She said I have never been so funny !!
In the evening of that day I had a KIP 7 that lasted for only 30 minutes. Following that attack I had a KIP 2 that lasted all night ( I could sleep) and most of the next day. I felt that something different had happened bc the pattern of the headaches was changed. That was on Saturday the 26th. Since then I have had a feeling like the headaches want to start up but can't.  Almost like a shadow of a shadow if you can understand. I have slept great Sat Sun and Monday nights and have no trace of the beast at all.  I think I am done with this cluster. I think that it is entirely bc of the mushrooms. I think its a miracle. Would't you , particularly at the height of a bad cluster, try anything to make it stop. I figured that I was considering having surgeons put an electrode in my head - what could I lose from an organic and natural substance. It worked thank God.

Title: Re: I must advocate - we must advocate
Post by Guiseppi on Jul 29th, 2008 at 3:12pm
Congrats dude! That's not a treatment available to me but I've sure seen a lot of success posted about it on the board. Just glad you found some relief, sounded like you was close to the end of your rope! ;)

Guiseppi

Title: Re: I must advocate - we must advocate
Post by swiftlaw on Jul 29th, 2008 at 3:15pm
Guisippi:

Thanks so much. Let me know if I can support you in your treatment.

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