New Member

[Dave O]

Good Morning, this is my first login to the site. Choose to read some chats and busting info before I jumped in. Whata wonderful site with great notes and stories. I have been afflicted with clusters for probably the last 5 years or so. Didn't know what they were other than horrible headaches. I used to just take Excedrin migraines till my stomach was killing me, and squeeze my head all night till I'd pass out from exhaustion...wow that sucked!!!  Last year week of Sept. 11th it was the worst I ever felt. Did not sleep for 3 days, and was afraid to go to sleep on the 4th. Finally went to the emergency room that night and described the symptoms, they told me I had "Cluster Headaches" Didn't know anything about them, they sent me home with some reading materials and a bunch of Vicodin. Probably should have told me not to in jest all of them at once. That night after the visit had the worst headache took all the Vicodin and some Excedrin. puked for about 3 hours and drove back to Emergency room. They hooked me up to oxygen, IV and pain relievers. I passed out for about 5 hours. I went to see my doctor, who knows nothing about clusters , and she sent me to see a Sleep Study / Neurologist. I'm now on a CPAP machine and sleep great, it also helps me when I feel one coming on and I breathe heavy and rest. They now have me on Etodalac & Oxycontin. Reading the warnings on both these scares the crap out of me and they kinda work, but the rebound headache from the Oxycontin is sometimes worse than the headache itself.. I've had enough of being in the FOG!! all the time. I am a veteran of the late 70's early 80's drugs, and used to love Mushrooms, now that I'm a father in my late 40s I wouldn't know where to begin looking for Shrooms other than asking my friends kids(That's just not right). Where I live in Colorado I hear having Shrooms is a class 1 felony...WOW! How do I locate any spores? And how long does it take to cultivate? Do I have time? My head is killing me. What are some other alternatives?   Look forward to hearing from any or all of with suggestions. What might have worked for you. and where you think I should start my quest for a Semi-Normal life. Dave O.

[raquelinkansas]

Welcome Dave!  You have come to the best place in the universe for CH.  I am new here too.  I will let the more experienced ClusterHeads chime in on your questions since I have not used those drugs personally.  I am currently trying to bust with HBW seeds and have had some success!  Everything you need can be found on the internet.  Here is a link in the meantime.

http://www.clusterbusters.com/faq.html

[Bonkers]

Hi Dave O,

AO's advice is spot on that "there's a lot more to it than just consuming a handful of mushrooms." Also, that you should first get a "for sure diagnosis" of CH before proceeding.

There's a lot of info both here and on http://www.clusterheadaches.com/wwwboard2/index.html that will better acquaint you with this condition and prepare you to knowledgeably talk to your doctor(s) about it. See a specialist, either a Neurologist or a Pain Specialist who's practice involves treating a number of headache patients. You can find this out on the phone when talking to his/her staff if they know what you're talking about when you say that you may have CH.

The treatments discussed on this forum have been of enormous benefit to many CH sufferers and may be of benefit to you. But first you need to get a "for sure diagnosis" and then learn what you can about CH before proceeding.

Ron

[Dave O]

  Thanks everyone for the response and the links. I will do more reading on all subjects and become more educated. It's great to find other people who can relate to what I'm going thru. Although I'm sorry for the fact any of us have this condition. knowledge IS power and the more I find out and the more people I discuss with WILL be benificial.

[tingeling]

Hi

And welcome to you

Since you can`t make something grow overnight, use what you have at the moment.

You have coffe. What can help constrict bloodvessels. where i live you can`t get proper taurin drinks. And some can`t take all that sugar or artificial sweeteners. or the sparkles. But i found a drink with only water and taurin yesterday, M150. Little glass bottle.

But you have good old coffe. I drink it cold, along with ice cold water. And when you drink that, you can hold a ice pack at your head.

This might help you a little right now hopefully.

Ask and we will answer, the best we can

[Carole]

Hi Dave, Welcome. I am from Colorado as well and new to the site. Where abouts are you?

I am 3 weeks into a cycle..haven't had to deal with these bastard headaches in a long time. The people here are great! Don't know if I'd have made it without them. It is a great comfort to have people who know your pain. I think 02 is a must. This site is full of information. I just started using RC seeds to try and (bust) break my cycle. I have a post on Busting called episodic bust where I have began to journal my experience. Agent Orange and other have their experiences there as well. A lot of great info.

Welcome. I'm sorry you have to be here :-/ Feel free to ask anything or just bitch

Carole

[Mad6string]

Hello Dave-O, You should look into welders O2. It's cheaper than med. O2 and just as effective. I would also try the seeds first, after you detox. It's a MUST if you want your bust to be successful. There are many people here who are willing to give an answer to any and all of your questions. Please read as much as you can and ask questions about what you don't understand. You can absolutely grow your own meds. It just takes a little time. As we all know, oxygen is a clusterheads best friend so, get it as fast as you can. Start a journal of your attacks. Write down the time, place you were, how bad it was, all of it. Study the kip scale to properly judge intensity. Then, make your plan to detox and give busting a try AFTER being diagnosed by a specialist. Let us know how you're doing.

Mad6string

[raquelinkansas]

Hey Dave-O.  I dont wanna piss anyone off.  But I was never diagnosed by a Nuero, most of my life I have not had insurance.  I was diagnosed by a regular ol doctor at a clinic.  I saw many doctors over the years and they all told me I had migraines.  THEY WERE WRONG!  If you wake up in the middle of the night and it feels like someone is stabbing one of your eyes with an icepick, and nothing makes it go away, worse pain you've had in your life, then you probably have CH.  I am sure diagnosis is a concern, ya know, to make sure there isnt something else going on in your head, but doctors have not been much help to me.  Just thought I would share that.  I may not be as smart as other people on here but I dont want you to struggle if you cant get to a doctor.  If you read peoples stories on here and it makes you cry cuz you know exactly what they are going thru, well nuff said.  If you have questions, feel free to ask. 

Your CH Friend,

Raquel    

[Mad6string]

If you've been diagnosed as a clusterhead, they probably know for sure that it's not anything else. I think they checked me for everything from cancer to ingrown toe nails.

Mad6string

[Dave O]

  Thanks Madstring, You know, no body has come out and say for sure I Have CH, I did a 2 hour CAT scan, checked out fine and the sleep doc was more interested in getting me to use the CPAP.My primary @ Univ. of Colo wants to refer me but doesn't know any neurologist in our program. You know I think I'm going to read all the postings on the site and see what would work out best for me.  Thanks for the reply.

[TXClusterHead]

I'm new to this site as well Dave, just signed up yesterday  and it's nice to know that we're not alone in this struggle, isn't it? I've been reading a lot of posts and these are some amazingly supportive and informational people on here. I actually went into my cluster cycle back in the beginning of May and I'm still dealing with it. I guess you could say I'm one of the fortunate ones, I'm episodic. However, my fortune has dwindled over the past few years as my pain free cycles are getting shorter and shorter and cluster cycles, longer and longer. What you'll find on here though are people that understand, that get it. Because they deal with it too, they feel your pain, or they have a family member or friend that's going through it. And we're all here to offer support. So, don't let the beast win. Get online, educate yourself, do what you gotta do. And above all else, stay strong. Take care.

[raquelinkansas]

I kinda sound like an ass above.  I just want to be supportive regardless of diagnosis, just want everyones pain gone.

Donnie, you always make me laugh.

I think they checked me for everything from cancer to ingrown toe nails.

Welcome to you TXClusterHead!

past few years as my pain free cycles are getting shorter and shorter and cluster cycles, longer and longer

I have noticed this with mine too.  21 yr vet.  Real random when I was younger, didnt last long either.  Now, at 41, they seem to come every year.  I am in my longest cycle ever.  Week 7.

[alleyoop]

TXClusterHead,

Just had to say, "Love your avatar man!"  Did you photoshop that yourself?

bb

[TXClusterHead]

Thanks and love your avatar too but I can't take credit for mine, I just googled Banner to Hulk transformations and found it. I figured the beast within was the perfect metaphor for what we deal with. Plus, I'm a nerd at heart that loves superheros.

[TXClusterHead]

Welcome to you TXClusterHead!

Thanks, Nice to meet you. I'm in my longest cycle ever as well. My dr says that typical of clusters. They stayed on the same cycle for the first ten years I had them. What sucks is at 10yrs is when I figured at what they were (misdiagnois like so many others for a long time), so just when I figured out what they were and their pattern, they changed on me. But, I'm trying to not let this latest cycle discourage me. The way I see it, I should be thankful. At least I have the luxury of having pain free cycles because of being episodic. It's the chronic sufferers who my heart really goes out to.

[alleyoop]

I figured the beast within was the perfect metaphor for what we deal with.

lol...yep, I think you are spot on with that!

[raquelinkansas]

TxClusterHead:

The Incredible Hulk.  Nice.  What night was that show on, Friday?  (showing my age)

I know, feel like a baby whining about 7 wks when others are chronic. 

I used to live in Arlington for 6 yrs.  Lived by the intersection of Collins and Lamar.  I remember my exit looped around and it was like a mile long.  Crazy! 

[shaggyparasol]

Hey everyone, why are all ya'll in such long active cycles?  Is everyone busting and not working?

Anywho, Dave-o, a couple of things:

The real experts on the pharmaceuticals seem to reside at www.clusterheadaches.com our sister site.  There is some crossover between here and there but most of them are well versed in the prescription meds, doses, side effects etc.  Some people here are too I bet, but that is more the CH.com thing.  Oxycotin/pain killers usually not super effectice for us. 

The caffeine in excedrin is the useful ingredient.  If taken super early in the attack, you can sometimes alleviate the pain.  But skip the aspirin and acetamenaphin (or whatever the ingredients are that don't work) and just get the caffeine via coffee, soda, redbull etc.  Most people swear by the taurine in the energy drinks, for me the caffeine alone works wonders if taken before the attack.

People take melatonin an hour before bed if they tend to get woken up during the night with a crusher.

Oxygen works wonders. 

All this can be read in more detail on the clusterheadaches website.

Now on to the good stuff.  If you don't have access to the psilocybes, just order some RC seeds and go with that.  They work for most.  The mushrooms tend to be more powerful, but the seeds are easier to get, depending on where you live.

Regardless of what you decide to do, it will be up to YOU, not your doctor or us as to what you want to do.  You should no longer accept the pain as there are many ways to manage it.  But it takes some time tofigure it out.

Good luck, stick with it.  26 years for me and I think I am finally figuring out the pain management stuff. > 

--Shaggy

[TXClusterHead]

I used to love to watch the reruns when I was growing up. Being 32 I'm not too far behind you, lol.

[Dave O]

  Hey Tx want someone to show their age? I remember Bill Bixby before he hent Cluster in Courtship of Eddie's Father...God I'm old!!!  Hey Shaggy, thanks for the insight, I just came over from the other site and was reading on their experinces and suggestions when I read your text...your right on with where I'm at!!!  I'm still trying to figure out what "RC Seeds" are short for. I'm sometimes dummer than a bag of hammers. Where on the the Shaman list or how do I obtain these? Do they have to ship in from somewhere other than Colorado?

[Dave O]

Thanks AO

[shaggyparasol]

Yea Dave-o, this stuff takes time to figure out so just keep plugging away and in a year or so you'll be the sharpest tool in the shed.  It really takes some personal experience to figure it out for yourself.  The more you read on the 2 sites the quicker you'll get up to speed and the quicker you can have access to pain relief when needed. 

Kind of fun sometimes too.  I have become a naturalist/herbalist over the years and it is very interesting which plants and fungus have synergistic effects with the humans.  

--Shaggy

[johnny]

Hey Dave-O.  I dont wanna piss anyone off.  But I was never diagnosed by a Nuero, most of my life I have not had insurance. 

Raquel    

i've never been diagnosed period. 10 years ago i was going thru the motions and i got fired from my job (ch related) and lost my insurance before i could follow thru with it. last cycle insurance was $100 a week so i treated myself. now i have insurance and i dont need to go to the doc for ch. these message boards have been most helpful.

dave post anything yo want. your best line of defense is to educate yourself. welcome

[raquelinkansas]

Shaggy:

Hey everyone, why are all ya'll in such long active cycles?Is everyone busting and not working?

Trying to bust.  First timer.  Using HBW seeds, was using ghana strain (weak), now trying hawaiin strain (strong), maybe its being stubborn cuz I quit the Topamax.  Who knows?!  I also am a Prozac mama, so, it blocks the seeds somewhat, but cant grow shrooms overnight.  I'm trying and besides, the seeds are helping.

[raquelinkansas]

Johnny, how did you figure it out?  And thank gawd you did! Doctors told me I had migraines for 17 yrs and I believed them till a doc told me I had CH.  I had never heard of it.  That was just a few years ago.  After that, it made complete sense, I was pissed!  Hell, Im still pissed.  I wonder how many women are misdiagnosed cuz they think we're pussies.  (sorry bout the crassness)