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Lee_Ann

Occipital Nerve Stimulator

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We all have had a moment where we would try anything if it might provide relief.  I believe strongly in the fact that our alternative treatment works.  I also know that a clusterhead will do anything, and that includes surgery to some, for any chance at relief.  Hope you are comfortable in whatever decision you chose and hope you find pain free living.  I pray to God every night for all of us to find some relief.

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True... birdman, I am trying atm some busting and so far it does not work much, and I admit I have some thoughts of disbelief even though I keep repeating myself it does work, yet I still get hit...

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Hi Chris,

I am so relieved to hear that you'll be postponing the permanent implant at least until you've given the shrooms a chance. Nothing works for everyone and the shrooms may not work for you. But for about 80% of the Clusterheads who do try them - and please get some personal advise from one of the experts here before you do - they do work and they work amazingly well!

Good luck,

Ron

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Hi Matty,

I followed the instructions I found on this site for the RC seeds.  I started with 25-crushed 'em and soaked in water for 2 hours.  Nothing happened.  I uped the count to 40 seeds soaked overnight- still nada- headaches every 3 hours.

I finally went to 60 seeds soaked overnight- nothing- headaches still a 10Kip.

I still have two vials of seeds- 50 in each- any suggestions on how to do things differently?

Chris

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Chris,

You might try taking all 100 at once.  I know some here have had better success with doses of 100 or more seeds.  I wouldn't worry about trying to soak them overnight; 2 hours should be sufficient to extract the LSA.

bobb

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Chris, did you have the trial ONS removed June 10th as planned?  If yes, that is only 4 days.  I wouldn't expect seeds or mushrooms to work within that time period.  They are medicine and like any medicine they take some time to give results.

As you know, my husband is chronic like you.  He hasn't tried the seeds, but if you have been reading my post "Success with Mushies"  you can see that it took some time and things did get worse before they got better.  I posted a recap last week.

I am so glad you are going to give alt meds a chance before the permanent implant.  But do give it a chance before giving up.  Another important thing is that you detox from your current meds.  I know it is hard, but it is important.

Wishing you the best of luck.

Lee Ann

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Chris, do you wait 5-7 days between doses of seeds, your brain lockouts for the effect of RC seeds for 5-7 days, thus taking them faster would be fruitless.

Do you take any pills after surgery that could mix with the seeds you take or are you medication-free?

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Chris, did you have the trial ONS removed June 10th as planned?  If yes, that is only 4 days.  I wouldn't expect seeds or mushrooms to work within that time period.  They are medicine and like any medicine they take some time to give results.

As you know, my husband is chronic like you.  He hasn't tried the seeds, but if you have been reading my post "Success with Mushies"  you can see that it took some time and things did get worse before they got better.  I posted a recap last week.

I am so glad you are going to give alt meds a chance before the permanent implant.  But do give it a chance before giving up.  Another important thing is that you detox from your current meds.  I know it is hard, but it is important.

Wishing you the best of luck.

Lee Ann

Yes- Lee Ann,

I did have the ONS removed on the 11th.  I experienced headaches again that evening- after having three days of complete relief.  I wonder if just having the leads inserted into the occipital nerve was enough to block the pain message being sent.  I really did have tremendous relief when the ONS was in.  I am still going to try the alt meds. Will keep you posted.

Ck

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Hi again Chris,

Unfortunately Imitrex interferes with the seeds. I detoxed 5 days from imitrex (and yes it is very hard to do) and used nothing but 02 and red bull to get me through. I have not used any imitrex since starting this, and my doses have been at minimum 5 days apart. In the past two weeks I have had 3 completely pain free days and I have not had any attacks over a 5 in weeks. I also have been able to easily abort most of my attacks with just 02. Please read my thread " and so the experiment begins" it is very detailed with all the steps I took, days in between, problems and success's. I never had to go over 60 seeds to see results and I am 6 foot tall 172 pounds. I wish nothing but the best for you whatever you decide but you need to do the bust correctly for it to work. PM me if you have any other questions.

David

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Hi again Chris, not sure if you are saying you will or won't wait 7 days.  But if you take the seeds everyday, you are wasting your precious resources.

Ditto what David said.  Please try to stay off the trex and use nothing but oxygen or red bull.  Do you have a non-rebreather mask and a regulator that has a minimum of 15lpm flow?  These will make all the difference in the world for your abort time.  Dan did not have a non-rebreather mask until he started this process and believe me it did make a huge difference.

Good luck and wishing you PFDAN.

Lee Ann

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Without imitrex, I am not able to live.

Hello Chris,

With all due respect dear.

Many of us suffered for years, before 02, & Imigran were even a prescribed drug for CH.

IMHO. The more Imigran you use. The more attacks you are going to have. The chemical imbalance this drug causes in our brains only helps to fuel the illness. Not to mention the stress it puts on sufferers hearts.

You are being given some very good sound advice on here Chris, by those who have gone down the path you now have to face, but you have to stick to the program.

Good luck.

CArlxx

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Ditto what CArl said.  For Dan, the imitrex only made things worse.  It created a vicious cycle.  Before his ONS trial, he was taking a shot for every headache.  He was so sure the ONS was going to work, he thought "why should I have to suffer any pain before the procedure."  He was getting a vicious attack every 3 to 4 hours.  He finally realized that the trex was causing it.  He wouldn't touch trex with a 10ft pole now.

The oxygen never worked well for him either until he got the non-rebreather mask.  Get one ASAP.

Good luck Chris, we are all rooting for you. :)

Lee Ann

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Good Morning Chris,

I have to agree with everyones post on this thread Chris!!  Pre and post dose detox is going to be vitally important to the success of your attempt at busting.  We know the annectdotal stats show "alt meds" to be an effective treatment for 75 to 80% of those who try it.....a 4 out of 5 chance to drastically change your life.....but these percentages are at optimum conditions, i.e., how completely you are able to detox prior to dosing and then being able to remain med free after dosing so the "meds" can work their magic.

I too wish you Good Luck Chris and sending PF thoughts and wishes your way!!

DD

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Hi Chris,

Each of us is his own experiment and each responds a little differently to the "alts" discussed here. Not to dissuade you from detoxing and following to the letter - as well as you can - the recommended protocols, but the important thing is to actually try these things and to try them under a variety of circumstances and dosages till you're sure one way or another if they're effective.

Like you, my son took increasingly larger doses of seeds (up to about 125, I think), never completely detoxing and had no response to them. Maybe they would have worked if he had spent the time and suffering to completely withdraw from Methadone, but he didn't and they didn't. We knew the psychedelics worked however, because a few months earlier a 1/2 dose of LSD knocked his CH out completely for 5 days; the first break he'd had from being a serious chronic in several years.

He found the shrooms to be equally effective and at this point is having to take a large weekly dose (4.25g) to remain pretty much PF. He's still addicted to Methadone but he's gradually weaning himself from the narcotic.

I think what I'm trying to say here is that you may not have to completely detox for the shrooms to be effective, that you may not find the seeds useful at all and that you may have to experiment with shroom dosages - even taking perhaps more than you're comfortable with - to find a dose that's effective for you. Don't allow the inability to completely purge your system of all other drugs to prevent you from experimenting with these incredibly effective substances.

Good luck,

Ron

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Well said Ron. The detox is a bitch but, in my experience, the shrooms helped the hits to not be so intense while I detoxed. Then, after all the crap cleared from my system the alt's finally took hold. You should also try to stay on the o2 for at least 10 mins after the hit subsides to ensure that it's gone for awhile. It's not going to be a cake walk by any stretch of the imagination but after you get through it you can look back and see how the imitrex was doing you so wrong instead of being the life saver you think it is now. PF wishes coming your way! ;)

Donnie

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