hey everyone,
I took my first dose of shrooms ever about 45 minutes ago.  I made sure that things would be nice and quiet beforehand, and now i am just enjoying the way I feel.  Kind of dosey, like i need a nap or something(but we all know what a mistake that would be)    I feel like there is nothing in my head at all.  Like the son of a bitch took a hike for a while..  Its great.  I hope the feeling lasts, and I wish I could do these everyday.    I was scared to take them, but now I see that there was nothing to worry about.  Believe me, a dose of trex into yourm feels much much worse.
just wanted to touch base with  everyone and thank them for their support. WOW THE COLORS DO LOOK BRIGHT.

chrisw  

chrisw wrote on Apr 28^th, 2009 at 3:26pm:

WOW THE COLORS DO LOOK BRIGHT.

Are you sure you haven't taken to much...! :D :D :D


Lefty...!

No I didnt take too much, in fact I dont thinkI took enough.  I felt a little weird for a while, maybe an hour or so,  but then I just felt regular.   I need to redose though in a few days because I have had 2HA since then and I feel another one brewing.   Obviously not the results I had prayed for. :( :( :( :( :(

Results can take a week or more. Or so I've heard.

Hang in there and give it some time. Do what you can to stop the attacks that come after the dose...(short of the triptans etc)...treat with 02 asap, ginger tea...etc etc.
You may find some hits begin and fade away before they really get started. If you have a rough couple days, don't assume that it hasn't helped. You won't know much about the affects of this dose until later in the week.


best of luck,
Bobw

Hang in there, Chris.  It takes more than a dose for some.  We've had to do several but are now seeing GREAT results.

Like Pinkfloyd says, try to avoid the triptans.  Blake only uses 02, energy drinks, coffee or tea.

Good luck....

Jackie

Jackie wrote on Apr 29^th, 2009 at 6:28am:

Hang in there, Chris.  It takes more than a dose for some.  We've had to do several but are now seeing GREAT results. Like Pinkfloyd says, try to avoid the triptans.  Blake only uses 02, energy drinks, coffee or tea. Good luck.... Jackie

thats what i did and had great success. it took about 5 days before i noticed a change. 2 and half weeks an i was pf.

good luck chris and keep us posted ;)

Hi Chris....My name is Linda and I Know that you're having a hard time.  Please don't be discouraged!  I take it that you are episodic so this latest increase in hits may very well be the beasts swan song.   Very often the hits get worse just before they're gone.   By very often I mean many, many episodics get that surge in hits.

"this too will pass"  If you want to talk, my number is (530) 224-9515 You can call me anytime you want.  I'm always available and around here you are never alone.  Please don't forget that o.k.?

Linda

Hang on tight chris.  Were all here with you.



                               Coach Bill

You guys are the best.  I think the crisis has been diverted for now, but man this is hard.  In almost 20 yrs of CH, never had so many hits before.
Thanks for your support and I will keep posting
chris :-*

Hang in there....you know you can call any time....don't hesitate.

Bob

Im back,  its 7am on day 2 after the shrooms and I have to say that I quit.  I dont think I can do this anymore.  I have to go back on my verap and maybe even a round of pred,  I am definately not strong enough to avoid the temptation of the needle sitting right there.

last night was pretty bad but i was doing well with just the O2 and ice, until I got hit with a holy shit, hail mary, on my knees level 10 at about 6am this morning.  

I think clusterbusting is going to have to wait and be a preventative in between cycles.
thanks everyone
chrisw :(

How comes some medications work for some and others are immune to everyting?

Do patients with shadows lasting forever are way more immune or way more elgible for them?

If triptans work for one, does it mostly mean clusterbusting will work too?

Afterall it is very similar chemical structure

Boy Matt you're asking the million dollar question. Why does lithium work awesome as a prevent for me, and worthless for someone else on the board. Why did verapamil do nothing for me but give someone else almost complete relief? In another hundred years we'lll get our arms wrapped around this CH beast and finally uinderstand it. Until then we walk around in the dark a lot trying to find individual answers. :-/

I'm one who believes CH is a group of closely related disorders, I have nothing to pin that belief on, just my own observation!

Joe

Guiseppi wrote on Apr 30^th, 2009 at 10:48am:

In another hundred years we'lll get our arms wrapped around this CH beast and finally uinderstand it.

Promise?

Brew wrote on Apr 30^th, 2009 at 10:53am:

Guiseppi wrote on Apr 30th, 2009 at 10:48am: In another hundred years we'lll get our arms wrapped around this CH beast and finally uinderstand it. Promise?

Mary Poppins would call that a pie crust promise....easily made...easily broken! ;)

Joe

I am sorry but I am on the bring of sanity... the constant shadows are driving me mad... I want the gold bullet... I want treatment to be found... something I could abort headache without rebounds... something that would give me normality again... I am having recently 4 hour headaches... it is not normal and they never fade away... they turn into shadows...

I have had shadows every day of my life, even in between cycles, for the last 5 years or so.  they may never go away.  I know what you mean about being on the brink of insanity. was there for a long time and now  i am in insane, and I dont know if I am ever coming back.  

When did your shadowing start, in which episode in your life?

Did the pattern of headaches changed when shadows started to appear?

Did they start when you took some new meds?

Also when you have shadows in between cycles, is drinking beer or doing/eating something that would trigger normaly headache still causing headache or making shadows become bigger?

MattA: How is your mood? you seem upset like I have been all week. I realized my shadows are MUCH longer when I am in a bad mood or when I let CH get to me. Try to ignore the shadows, and something extremely fun or positive like making love to a woman (seriously). Try to stay positive. See if the shadows went away.  Today I saw a Neuro for the first time and got confronted with a set of bad options, stressed me out, and I have the longest shadow Ive had ever.  Its not a coincidence. Its because I am letting this problem get to me.  Try to stay positive, I know its hard, but it might make some shadows go away. The key is to not linger in a woe is me state. It only makes it worse

MattyAA wrote on Apr 30^th, 2009 at 9:19am:

How comes some medications work for some and others are immune to everyting? Do patients with shadows lasting forever are way more immune or way more elgible for them? If triptans work for one, does it mostly mean clusterbusting will work too? Afterall it is very similar chemical structure

yeah like joe said thats a mystery. clusterbusting takes about a week or 2 to get any kind of an effect. the key is riding out those 2 weeks with o2 and non rx abortives. it's a tough stretch if your hits are intence and frequent. it's not an easy regiment  but it seems more permanent than rx methods.

I am following your thread chris and learning. I have the option available to me also for my next cycle, but the Verapamil worked so well for me last time that I will probably stay with it for my next battle.
I pray they start kicking in for you very soon. PF wishes being sent to you.

 Barry

edited for saying cycle 3 times in the same sentence.

-johnny- wrote on Apr 30^th, 2009 at 4:32pm:

MattyAA wrote on Apr 30th, 2009 at 9:19am: How comes some medications work for some and others are immune to everyting? Do patients with shadows lasting forever are way more immune or way more elgible for them? If triptans work for one, does it mostly mean clusterbusting will work too? Afterall it is very similar chemical structure yeah like joe said thats a mystery. clusterbusting takes about a week or 2 to get any kind of an effect. the key is riding out those 2 weeks with o2 and non rx abortives. it's a tough stretch if your hits are intence and frequent. it's not an easy regiment  but it seems more permanent than rx methods.

I actually could do it... my hits are kip 2-5 though they last 4 hours and they emerge from shadows and submerge to shadows so... it is weird...

Problem is I live in Poland and European Union No idea where to get stuff for Cluster Busting... there are shrooms growing but it is not season..  

Maybe like j0hnglist the shadows emerge because hypothalamus is responsible for hormones and all life stuff, therefore there is hormone that is responsible for stress (cortisol) perhaps by being steessed I make melatonine or serotonine to be increased/decreased since hormones work similar to (if I pour some yello water, green water will spill out, decreasing its level) I think so it works similar.

How comes some people say relaxing makes them have headaches? Too low cortisol level? Which means relaxing makes it even lower, which means it might increase levels of other hormones since its like there is more space in this yellow/green water glass thingie, so there is suddenly more malatonine/serotonine?

Why stimulating nerves work too? in bionic surgery.

Can we control hormones levels by just stimulating nerves and not only via chemical medicines?

maybe since youre not on any triptans or other meds you could go on the clusterbusting site and grow your own.  it only takes about 2 months or so, and if youre still where you are now, it may be well worth your time and effort to do it.   I am making a promise to myself to get started on it soon,  although there is no real hurry, because I am not going to really try the shroom method again until i am out of cycle.  (If that happens,  I dont want to count my chickens until they are hatched, or jinx myself  into becoming chronic)

good luck, and for the most part, when I am not in cycle, I have shadows everyday, they remind me that i am a clusterhead, and I am somewhat thankful that they are shadows only and not direct hits.  They may be something you have to get used to.  Oh and stress makes them worse for me,  and sex always makes them better.

chris :D

I just recently started using injectable imtrex and must say it work great.  I also got my hand on some shrooms and stashed them away til I got some more info on the use for treatment.

So the question is if I take some of the shrooms should I stop using the trex?  Just stick with o2?  

Jack,
the consensus is that you need to stay off of tritpans for a week or so befor eyou try clusterbusting.  If you can use just the o2 for a while, there is no reason not to tryit.  I messed up by useing trex after I dosed with the shrooms.  once I came off of my verapamil, I got more hits than I could stand, and they were coming hard, and frequent.  (every 45 min.  all night long, night after night).  But if your not useing any other meds and you can get by with just 02, give it a try.

good luck, and let us know if it works

love
christine :D :D