Meds not working..Going to try to bust!!

[Jeff_007]

Hey everyone...

I found this site about three years ago when I was finally diagnosed with CH and now unfortunately I'm back.  I'm a 15 year sufferer.  Here's my story.

Like most I was bounced around from doctor to doctor and diagnosed with migraines by each since I was a teenager.  I was put on every migraine med with pretty much no success and tried chiropractic therapy for many years. I thought the chiropractor actually worked at some point because I went into about a 2 year remission for some reason. Then about three years ago I started the worse cycle ever. Thats when I did my own research and found CH online. I diagnose myself and started making calls to any doctor that had heard/treated patients before. I found one and explained my symptoms to him and sure enough he ran all the blood work MRI's ECG's etc. and diagnosed me with CH. I am episodic and since then Topamax has worked for me great. Except for the fog and the low appetite and all that jazz I've been pain free for the past 2 year. This year I did the usual. The first sign of my cycle, I started on my meds and all was good... About two week ago, I got hit with a Kip 8 and its been down hill from there. 4 a day since then all high levels and at least one at night and non stop shadows. My doc raised my dose and still no relief. I've never had O2 and I've been suffering BIG time. I dont know what happened but its like they just stopped working.

To tell you the truth I've never liked being on meds anyways. My wife hates it too. I'm not the same person. Now I am useless with the hits coming. I cant help with the kids or around the house. I'm afraid I'm at the peak of my cycle now. My plan is now to try to bust it but I'm going to have to detox. How long should I detox? I am on 100mg a day and just stopped yesterday. I want to use the shrooms and I have them on hand. I'm thinking of ordering the RC seeds as well just in case. Any input you can give me will go a long way. Thanks to all.

Jeff

[raquelinkansas]

Hey Jeff.  I'm glad you found this place. I'm sorry you have CH tho, doesnt it just suck?! I am new here as well.  The advice I got from here was 5 days of detox from your meds.  Sounds like you need oxy.  I am not experienced in that, not the proper way, and, there is a proper way.  If you click on the menu on the left there is an "Oxygen" page.  Also, there is a "Faq" page that has a ton if great general info in it.  Here's the link: http://www.clusterbusters.com/faq.html   I'm sure other ClusterHeads with chime in with more info.  There's alot of great people on here to help you.  Hang in there and welcome to ClusterBusters!  Oh, get some Red Bull for the detox stage.  It might help if you catch the beast quick enough.  It has helped me.  You gotta catch it early tho, and drink it fast.

Raquel

[Jeff_007]

Thanks, Nice to meet ya Raquel. I've been using the red bull but it seems like when I come off of it I'm for sure going to get hit harder than usual.  It seem like I just need to let it come and get it over with. I think I'm just prolonging the agony. I will def use them to detox though. I've never used OXY though but it sounds like its the shit.

[raquelinkansas]

Damn, was hoping the Red Bull would help.  You know your body better than anyone so if its making it worse, dont mess with it.  I only used oxy once and I didnt have a rebreather mask so it wasnt very helpful.  People on here swear by it.  Get it if you can!  Print that oxy page out or write down the info and give it to your doctor.  If you dont have a doctor, people on here use welders 02.  Just ask, someone will send you in the right direction.  Glad you have access to shrooms, thats awesome!  Keep us posted!

[Bonkers]

Hi Jeff,

Before dosing, read as much here as you will and become familiar with the process. Basically, you need "cracker dry" mushrooms. You can grind them into a powder in your coffee grinder and put them into capsules or make a tea out of them or just pop 'em in your mouth, chew 'em up and swallow 'em.

You should start out with a small dose, say 1.5 grams. Keep a log of your experiences with your HAs over the next week and dose again with the same 1.5 grams if it was effective. By effective, I mean did it cause any change in your experience of your HAs. If not, and if you didn't notice any psychological effects in the hours after dosing, up the dose by about .5 grams. Continue upping the dose every 7 days by .5 grams until you're sure that you've had psychological effects from the dosing and no changes in your experience of your HAs. If that occurs, you're probably not a good candidate for this treatment.

When you get a change in your HA experience, positive or negative, repeat the dosing at 1 week intervals for 3 doses. You may well find that, at the end of your 3 week experiment, you've either "busted" or found that the severity of your HAs has substantially decreased or the frequency substantially increased.

Please continue to post to this forum throughout your dosing experience. Not only will someone here more than likely be able to answer your questions but your experience will provide us with extremely valuable data. You're becoming part of a program that we're all involved in that is still in its infancy. I hope it works for you and you remain a contributing member of our new "I-used-to-have-cluster-headaches" club.

Ron

[Guest]

My doc raised my dose and still no relief.

Hello Jeff,

Your introduction's not an uncommon story.

Many, if not most of us on here have been on the conventional medication roller coaster.

Hopefully, you will not have to deal with the pain for much longer. Being as you are an episodic sufferer, the RC/Psilo treatment should work very well for you. As should the 02.

Which you really do need to have in place before you begin busting.

None of the conventional Meds are specifically aimed at CH, & many can have serious side effects. So your at the right starting base my friend, & hopefully soon, to be PF.

Regards.

CArl...

[birdman]

Please, please, please, give the o2 a serious read and try it.  It can be a life saver!!!!

[tingeling]

Hi

And welcome to you

I don`t know how much info you`ve been given from doc`s about sleep and food?

This affects us big time, so if you haven`t, just say so, and i will give you a little input on that one. I find it very important.

This is a great place to join, and it has certainly saved my life.

Wishing you, and your family the best

Tingeling

[davidj]

Jeff,

Please do NOT attempt to bust without 02. While busting is extremely effective the initial post dose hits after your first 1 or 2 can be very extreme and without 02 you are going to want to run back to your meds. Get an 02 script ASAP with at least a 15LPM prescription. If you have medical insurance you will be good to go (in most cases), insist your 02 company find you a regulator that goes that high or higher if possible if not check out e-bay or PM Jayhedges. There is no way I would have made it through my bust without it and I was pretty much an imitrex junkie. Good luck, read a lot and feel free to ask lots and lots of questions.

David

[Jeff_007]

Hi Jeff,

Before dosing, read as much here as you will and become familiar with the process. Basically, you need "cracker dry" mushrooms. You can grind them into a powder in your coffee grinder and put them into capsules or make a tea out of them or just pop 'em in your mouth, chew 'em up and swallow 'em.

Ron

I think I have Cracker dry mushrooms. I've done mushrooms many many times in my highschool and college days and probably busted cycles without even knowing. They are not slimy or anything like that if thats what your thinking. I've read all of the info on dosing and I think I'm up to speed. My only problem is the detox stage and getting through the pain without O2. I'm hoping to get some before I start to detox. Eventhough the meds are not working I cant just stop or I could have a seizure since they are ani seize meds. I have to wien off of them. My other problem is that I would like to take a bit more than the recomended dose as I have more experience with shrooms than most people. I also have a group of buddies that want to relive some of the good ol days with me while I try this experiment. Should I just stick with a low dose for now or should I go for the gold and take a recreational dose?

[davidj]

Should I just stick with a low dose for now or should I go for the gold and take a recreational dose? 

don't know if it helps the bust but you might as well enjoy yourself since you are experienced LOL

[Bonkers]

Hi Jeff,

Low doses are advised for inexperienced busters to avoid the fear that can often accompany a large dose for a 1st timer. It's also for many all that is needed. Take as much as you're comfortable with, not so much to "go for the gold" since busting usually requires more than a single dose, but because a larger dose is more likely to produce a change in your CH.

Detoxing beforehand typically produces a more positive effect on your CHs but don't avoid attempting to bust if that's impossible. Give it a shot. If it doesn't work, then detox or detox as much as you can before trying it again.

Good luck,

Ron

p.s. - Sorry for neglecting to mention the oxygen. It's worth the wait till you've got it if you detox before you dose.

[Jeff_007]

Ok all. I cant see a neuro for two weeks to get the O2 now. I've already started my detox slowly. I should be done taking my meds by then and then probably about five more days to get it out of my system. So I'm lookin at about 20 days before I bust. I'm thinking that its almost not going to be worth it since my cycle might start to come back down? Dont know for sure. I do wish I had O2 for the detox though.

I started going to a Chiro last week to ease some pain in my shoulder and neck as I usually do when I start having CH. I find it helps with the stress from the HA's too. Dont worry I'm not thinking that its going to releive the HA's as we know it doesnt. I notice that I sleep on my right side with my head all crooked and my shoulder digging into my neck so thats why I go.

But I think its changing the activity of the occurences somewhat. After my first visit last Thursday I got hit two hours later at 10 am. I never get hit in the a.m. as I am a coffee drinker and they usually stay away at that time. My times are like clockwork (still amazes me). 3PM 5-6PM (that ones not too precise yet) 9PM, 11PM and then wake up all night long. But since the chiro visits they have been fluctuating a bit and have been a bit less intense. Except for last nights 11PM one. That was a bit of a killer and lasted over an hour. The others I could fight off and were only maybe 20 minutes.

Its probably just all in my head..LOL... but I've seen the Chiro now twice and now I'm getting them in the morning as well, but the duration and strength is not as bad.

Just thought I'd share

[birdman]

Jeff, if you can afford it, go for welders oxygen, no script needed, same o2.  I have the big tank in my bedroom of welders 02 and the small tanks through insurance at work.  Best of luck to you and keep us posted.

[davidj]

Jeff, if you can afford it, go for welders oxygen, no script needed, same o2.

It could get you through the next few weeks, also I always call my Dr and tell him "there back" and he will call in an 02 script and then see me when he can.

[Jeff_007]

Ok. While detoxing (Slowly since its Topamax) I would think that I would start to get hit a bit worse. They are not as intense or long, but I've been using ice packs, cold air, and red bull to try to abort for now so that could be it.  But I did sleep through the night last night. Didnt get hit until 6:30 this morning. That was nice! My first full nights sleep in almost three weeks. Could the meds have been causing these to get worse when they finally broke through?

[raquelinkansas]

Thats how I did it too.  Ice packs and Red Bull, and fast, deep breathing.  I quit the Topomax too and am having the longest cycle ever!  Sux!  Seeds are helping tho.  I can tell you this, I won't be getting back on the topamax.  If you quit taking it, you will get hit, I quit it before but this time I am staying off of it for good.

[johnny]

Thanks, Nice to meet ya Raquel. I've been using the red bull but it seems like when I come off of it I'm for sure going to get hit harder than usual.  It seem like I just need to let it come and get it over with. I think I'm just prolonging the agony. I will def use them to detox though. I've never used OXY though but it sounds like its the shit.

keep in mind after you bust you may get hit very hard with an attack but busting does have lasting effects over meds. i strongly recommend learning to use o2 to get you through the after effects. o2 absolutely is the shit but it has to be done correctly for best results. after you dose i would not use the meds you were prescribed for CH. this will counteract the effects. please feel free to post any questions you have. clusterbusting is a wonderful healthy alternative  to prescription meds. welcome jeff and please keep us posted

[johnny]

jeff you rent an o2 bottle from a local welding supplier. you dont have to buy a bottle. i get mine from tractors supply.

here is some o2 info for you

http://www.clusterheadaches.com/O2/index.html

many of the things you need to start using o2 are available without a script. use a 15 lpm reg or higher. i use 25 lpm. DONT LET YOUR DOCTORS KEEP YOU FROM GETTING O2. your the one in pain

[Jeff_007]

jeff you rent an o2 bottle from a local welding supplier. you dont have to buy a bottle. i get mine from tractors supply.

I'm looking into a place by me that does both medical and welders O2 called Airgas. My only worry is the regulator. I read through everything but does the one with the hex nut fit on the welders tank? I just talked to Carole (CB member) and she had this delema last night where her regulator wouldnt fit her new welders tank. BTW. Just got hit at work at 1:20....Thank GOD for red bull. It kept it down to about a 4 and only 10 minutes. It came quick and strong and I think it would have been a big one.

[Dallas Denny]

Here's a pair of used ones on ebay for $58 inclucing SH......as long as it has a female CGA-540 fitting it should work on a welding O2 tank.......

http://cgi.ebay.com/2EA-VICTOR-SR450D-REGULATOR-OXYGEN-TORCH-WELDING-GAS-/220643973432?cmd=ViewItem&pt=Pneumatic_Hydraulic_Valves_Parts&hash=item335f67d938

And a new one for $63 including SH.....

http://cgi.ebay.com/Welding-CGA-540-Oxygen-Regulator-Medium-Duty-/170518099830?cmd=ViewItem&pt=LH_DefaultDomain_0&hash=item27b3abb776

Dallas Denny

[Carole]

Hey Jeff, Hope you haven't had any more hits. Just an FYI I think the reason my regulator was leaking I put pipe tape on it and I think maybe too much???? The guy today said not to do that it could cause combustion. Sux cause I put it on the previous 2 tanks. Now today I can't get the damn thing tight enough...anyway. Glad you are working hard at getting 02 I think you will find it a life saver [smiley=engel017.gif]

Carole

[Jeff_007]

Hey everyone,

Well, Got a package from great person to get me started on the O2 and was hooked up by Friday night. This is my first time on it and all I can say is WOW! If anyone is not using oxygen GET IT QUICKLY! Its working great for me. I'm killing hits in 5 minutes and they are staying at very low levels. I actually have my life back somewhat.  My kids both have noticed it too! Thank you to everyone for guiding me through the process to get this hooked up!

On another note, I'm still detoxing from Topamax and the hits are coming more frequently. But I have the oxy. I'm planning to be done taking them by the end of the week and then another 3-5 days to get it out of my system. Then Zero our begins. I will start another thread to document my shroom bust.

Jeff 007

[alleyoop]

Great news Jeff!!

[raquelinkansas]

Yay!  Oxy!