New here

[domino]

Hello , My name is Tony,

I have been quiet for way too long, I have always checked out the boards and have done as much research as possible ever since I have been suffering for these monsters. I was about 16 when I had what I now believe were shadows, followed by intense pain, all the while my mother would take me to the doctor and was told I had a sinus infection, or it was hayfever, I dont think they really got the point when I would say I cant sit still , I have to move it makes me feel better. I grew up in Monterey on Ft.Ord Army Base and was brought up by a hardline family that forwns deeply on the use of drugs other than what was given to you by a physician. Since 16, I have had them every 5 years or so with smaller cycles in between, not hitting as hard and not as frequent. I always knew when they were coming and I would cringe. I hate it more than anything in life.

Here I am at the age of 40 now, still living in California and love my life but I sure do want to spend more quality time with my family, my kids are my life. As the years have gone by I have been so embarased and have never really told to many people around me other than my family what I suffer from, when they hear headache they think, take some tylenol you will be fine. Or go lay down and take a nap. I think if they dont see blood then it must not be that bad. I have given myself stitches whiel in the middle of an attack, sure it isnt pretty the scar is nasty because I couldnt really hold my hands staright while doing it, but I couldnt even feel it, I stood there with tears running out of my left eye and blood dripping from my arm, I cut myself from jumping up and down and running in place and banging my head and I fell over and cut my bicep open, so I sticthed it up, didnt feel a darn thing until about 15 minutes after my headache stopped.

I have been scared to be honest with all of you, the last time I went to get help from my doc, I ended up on so many drugs and then he told me that I must be bi-polar and I was put on even more drugs, all I wanted was O2, they thought I was a drug attic looking to get a RX for narcotics, I told them I wanted O2 thats all. I ended up going to a pretty good Neuro up here in the Roseville area, he ended up helping me a few years back with Verapamil and Prednisone. It was a bad cycle, one that put me out of work for 3 weeks, I am the type of person that has to be made to take time off form work so it really bothered me.

Like I said I have never really spoken out about this, I guess part of the reason is it seems as if there arent too many of us out here and it is scary. it scares the crap out of me to look at my 10 year old son and wonder if he will have to endure this one day, for that I wish he never feels this ever, for thta matter any one I know.

Like I said here I am almost 40 and have such a bad cycel going on right now, the doctor has given prednisone, verapamil and they dont seem to be doing too much for me this time aorund. it sucks. I have always wanted to try to battle this by natural ways such as excersise diet, water etc... but I dont think it much matters with this. I think this is too deep inthe brain and a malfunction that we all have.

I have cursed at god, I have asked what did I do in this lifetime to hbe so blessed with this. I have never given these alternative treatments a try but I am thinking anything at this piint for it to end I will do. I am having to wear a hat to work this week because I beat my head and grab it so hard I now have nice big scabs and scares on it that are embarssing as well. I am depressed, tired and just done with this sh&t.

I hope to be ch free one day, in fact I was told I would grow out of them. It seems they get more frequent as I age, and more painful than ever before. I watched Bobs video today, I am ready to try a new form of treatment now. I have to , i feel as if my life depends on it. I cant function this way, the prednisone makes me a grump and it also makes me feel like I have the flu in my joints, maybe it is the verapamil?

I suffer with the rest of you and I understand what you have and do go through, I live in northern california and if any of you ever feel like reaching out to me for support , I will now be a member on this forum from here on out.

I wish you all the luck.....

[domino]

and by the way, here at work when I get my daily one at 2:33, I go outside and walk as fast as I can to get as far away from people as I can, I get so darn embarssed. I think I will moveinto an office here at work lol. I get so crazy when I have a cycle that sometimes I have no clue how I can be so darn snappy to others around me, I went off on a neighborhood bully the other day after she was making fun of my daughter on her birthday, this 16 year old girl is so mean and when she made my daughter turning 13 cry for being a "nerd" I started to go off on her and called her a few choice names and I regret it now, but darn it , it is almost like another state of mind , one minute I could be cool and calm, and the next minute in a rage ususally right before the onset of an attack, not sure if any of you have this or if it is because of the meds and a lack of sleep, byt the way lack of sleep I try to not even bother going to sleep in a cycle, i know that is bad to do but why wait .....

[Dallas Denny]

Hey Tony,

Welcome to the club no one wants to be a member of!!!  Sorry the beast is having his way with you!!!

Sorry to tell you this, but when I was about 50 a doc told me most men grow out of CH in their late 50's.....at 63 I'm now wonderin what part of my late 50's he was referring to...LOL!!!  Like everything else with this bastard I think it depends on who you're talkin to.

Since you say that you're ready to try "alternative meds", my advice is to read, read, read in the clusterbusters files section and ask questions.  There's folks on the board having success with several different options!!

Good Luck and Welcome Home!!!

Dallas Denny

[shaggyparasol]

Hey Tony!  Hang in there daddy-o, we can beat this thing down to a low roar. 

A couple thoughts to start with: your kid may get them and he may not.  If he does, your experience will dramatically change his.  He won't have to suffer in pain for 20 years like so many of us before figuring out things like oxygen or psilocybes or caffeine/taurine etc.. 

I know it is embarrassing and it is hard to explain to people who have no idea what you are talking about.  What's the saying?  "only a mediocre man is always at his best".  Sometimes we are down for the count and that is OK.  Most of my friends, family and coworkers now know about my CH and many of them know that I psilocybe to manage the pain. 

Anywho, check out clusterheadaches.com too if you haven't already.  Lots of great info there.  Look into the melatonin/kudzu herbs that people are doing with some success.  Lets the night-timers sleep.  Sorry you have to be here, but stick with us we are an ok group.   

--Shaggy

ps, I'm 44, when do I grow out of them?

[Texas Cluster]

hello Tony.

  you have found a good bunch of people here that care.

we all know and understand what it is you are going through and we have all been in your shoes when it comes to others understanding, people look at me like I am crazy when I am being attacked by the beast, and if nothing is broken or bleeding they wont get it until they research what a ch is all about, then its all apologies..

and as far as growing out of them, from what I have learned from my experience and reading..they get worse..and once you go chronic its even harder to deal with...I still haven't found my remedy yet, and have been chronic for 3 years now..but you cant stop looking..I was prescribed verapamil and ergotamine and they seem to make the numbers and severity worse..I cant seem to get control of them..but ready for the psilocybe.

and I can relate to the "being made to take time off" I worked in the oil field and did work in chemical plants up and down the gulf coast...last three years I have not been able to do anything but wait for the next one to hit..I don't want to discourage you in any way..I have heard some good outcomes on positive effect from many different things, we each have to find our own, as everyone is finding different ways of treatment fighting this beast..

my fingers are crossed you find something even if you have to try psilocybe, its not what others think about you, NOW its all about whats going to help you.

Wish you the best and glad you found clusterbusters

  Darrin

Texas Cluster

[Guest]

the doctor has given prednisone, verapamil and they dont seem to be doing too much for me this time aorund. 

Hello Tony,

No point in taking this medication if it's no longer working.

If your going to go down the alternative route, then you will need to detox from all of this anyway, so may as well begin now.

You will have to detox gradually, not sure what the protocol is for this, it's been a long time since I used them, but someone in here will add input to that.

I'm a UK sufferer, & the procedure for us to get 02 is different to how you obtain it over there in the States. So again, someone on here will help you with that.

Important thing is to have it in place, & learn how best to use it, before going any further.

RC seeds. LSD, & Psilocybin ( Magic Mushrooms ) are by far the best way to stop this pain.

Wishing you well my friend, & if I can help, ask away.

CArl...

[domino]

Thank you to each one of you that replied to my post. It means a great deal to know that I am not alone, Like I said in the past I would get online but just becasue of the stigma of this never did post anything in the past, and when I did look around in the past the only thing out there I could find was ouch and the chapter in California. Never the less, Im glad you guys are around, now I dont feel so alone, telling people gets to be funny in a way, next thing I know I have people telling me I should try to take this or do that, it helps them with their migraines, I have never had a migraine and do not know what they feel like, but if they rank anywhere near a cluster I do feel sorry for them, but being told to chill and find a quiet dark room gets old after a while lol. No biggy but people dont understand. I even have a friend on facebook that said he knows 3 people with cluster headaches, I find it odd, I am the only one I know lol, besides you guys. I think it is the hwole hearing the "headache" part of it.

As far as trying to go alternative for medicating, I am ready to try a different means to get relief from this monster. I will do my homework though very very carefully and I am a fanatic about research.

I have stopped the meds all together, I feel my body needs a break and I need to have a clean out period. I stopped all meds cold. I am suffering and hitting only 3's and 5's kippers right now, but I know how I feel and it is like the calm before the big storm, I got a small break with the verapamil and prednisone, but since I had to stop taking the prednisone they have started to hit a little more often and a little more on the kips.

Glad I found this site. I was bummed a little to hear about you guys that didnt grow out of them lol, and how you tend to get more chronic as you age. Sucks but finding a way to manage it now will save my butt in the long run for sure.

It reminds me of a movie or something at times, so sureal, like, almost as if we are all supposed to be doing something together lol, like we have a special purpose with these things, like I tell my wife it is because we are so smart it hurts. Having a high IQ can be painful.

Thanks again guys for the welcoming.

[domino]

Oh by the way last night sucked, my wife made some dinner last night, smelt really good, she stopped by the store on her way home and bought some premade pasta sauce, I was so hungry and ate it, about 5 minutes later I was having a bad hit, I couldnt figure it out, come to find out the pasta suace was made from burgendy wine. fun fun.

[clustermom13]

My son started out chronic, and remains there after 5 years.  He is now 18 years old.  When he gets hit, he wants to be dead, says he can't do it anymore.  Happily, that sentiment passes when it's over.  He has learned, somehow, to get up every morning, and suck every little bit of pleasure out of life that he can when he is in between hits.

Every single aspect of what you are experiencing, is shared or has been shared by everyone here.  Out in the "real world" we (and I classify me as one of the we even though I don't feel the pain you feel in my head, I feel it in my heart every time my baby does) feel very alone and misunderstood, because we are.  Here we find support, solace, understanding and wisdom.

We have been busting for about 6 months.  With some ups, and many downs.  Patience in the process as it is different for everyone.  Rejoice in the victories, however small.  Remember that you are on the right track, and will one day reach the place you so desperately seek. 

I am no expert by any means, but have learned a great deal in the last 5 years, and especially the last 6 months.  If your doctor won't give you what you need, find another one.  You can get your own regulator without doctors permission on the internet.  Sometimes you have to take your care into your own hands.  I suppose that's why you are here.  You're on the right track.

Holler if I can help.

[Napa1026]

Hey Tony

have you read the "cluster Buster Files" from the main form screen yet. If not, you should read the files, especialy the "mushroom FAQ'" you will find info on detoxing ect.

Do you have 02 yet?

Im in Antioch. Hi neighbor

Steve

[Bonkers]

Clustermom13,

Hi Christy. I can't reply to your last PM. I'm on your "ignore list."

Ron

btw, good post.