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Angel

New here - My Hubby's story

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It's freaking me out having you in so much pain with nothing appearing to work no matter what you do. I've been there with my son and it's heartbreaking, so frustrating. If you don't get some relief by the end of tomorrow maybe you should think about going to the E.R., telling them your story (less of course the part about the illegal psychedelics) and make them get you out of the pain. At one point, my son was put into a drug-induced coma. That's pretty extreme but you gotta do what you gotta do. I'm not saying they'll do that. They'll probably just give you a narcotic cocktail to get you out of the pain. I know that runs counter to what we're trying to do here but ya gotta get outta the pain, Dude. I apologize to the board. I'm sure that advise is offensive to many people but I can't think of anything else and I can't stand to see him continue to suffer. Maybe he's got something other than or in addition to clusters, something that the Drs can find and treat.

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Hi everyone - Thank you all for your advice and encouragement! After 3 days since dosing with 2gr of mushies my hubby is still going through hell! Ha's every 2 hours during the day and every hour at night !! He can't eat or sleep and he is exhausted!! Can't even get out of the house right now... :( He went through 4 welders tanks of 02 in 1 week !!! It almost seems like it's a whole new cycle that has started on the other side ? Because he get's more hits on the other side now!

Will see how it goes tomorrow and Sunday and if there is no improvement he will go back to meds. Zomig and verap. So he can get a break and then maybe try busting again later. There is no way he can continue like this! Hopefully this was just post dose hits and will start to see improvement in the next few days !!

Will keep you posted !!

I believe that at least in my case clusters are an electro/ chemical imbalance and with gentle persuasion one can bring that into balance.

I, like your man used to suffer 8-12 hits every day and night. The hits lasted on average 1-2 hours each at the extremes. Though I generally had a 1 to 3 hours break every day.

I have better results with smaller doses.

We see that often a hard dose will cause either a break in CH or increase the hits to an unbearable situation then gone. In most cases its all thats needed

Angel.   Its apparent that the methods you all have used do, do something, so its worth the effort of one more try only in a different way. But thats my opinion.

Do not do this if you are uncomfortable. And its ok if traditional meds help instead.

Relief is what we all seek. I truly hope you find your magic.

Using only the RC seeds. Its hard I know, but it is the method that finally broke my cycle several years back and I have used it a few times since. Traditional meds never helped me.

I dont reccomend this for people having good luck with traditional busting, or those being hit just a few times per day.

This is absolutely not for everyone and I only suggest it in extreme cases.

It is contrary to the proven CB ways but some of us are contrary to all normality.

Caution be aware of what serotonin syndrome is and know yourself. Watch for extreme chills and other adverse events, etc..

The theory is to keep the receptors closed with a very gentle pressure on the doors vs. waiting again for them to open.

If you try this there will be no feelings from the seeds but extreme exhaustion may set in for a few days. It can take anywhere from 5 to 10 days.

Similar to useing a prednisone taper one can use the RC seeds in the same way.

You must know your effective dose( the point where the seeds can cause sedation or a slight tingling in your extremities or face. We are all different in that way.)

after the 5 days from last dose you used or when the CH returns.

Take the larger effective dose at bedtime, say 30 seeds.

The following morning or within 8 hours take a smaller dose of 15-20 seeds.

In the evening 15-20 seeds.

Each day following, dose morning and night within 12 hours apart with a lesser amount of seeds.

Day 3) 10 -12 seed doses 2x

Day 4) 8-10 "                    " A constant dull migraine type headache may set in here for several hours.

Day 5) 5-8.   

By day 6 some high exhaustion should set in continue to dose with diminishing quantities at this point 3 seeds become as effective as 50 and in the next day or so if things are clearing start to increase the time between dose with minimal amounts. untill you are up to weeks CH free.

If the receptors have a chance to reopen, for example waiting 3 days between doses, then you must go back to your effective dose and that may now be say 15 seeds. Sometimes at that point the hits wil go with a single dose.

You should then be able to institute maintenance dosing with the seeds,but only as mild symptoms appear vs sheduled doses. Maint doses will slowly spread out to 10 days then 20 then 6 weeks as needed or maybe months then years..

I have seen it work with a few of us and quite often just a few days can do it.

Extra note; in this method its ok to use very small doses of seeds (3-6 powdered and absorbed under the tongue) to abort any attacks that break through between doses. Remember you are trying to keep the specific serotonin receptors closed, The opposite of waiting for them to open to dose again.

During this process, again, you theoretically would be unable to dose in a recreational way as one would not feel the hallucinogenic dose affects of any of the CB meds. The receptors are closed.

Its important to not let the receptors open and in my case I dosed 3 times per day. Beyond 7 days may be pushing it.

The RC seeds will have differing strengths of alkaloids and in some cases none at all, so its important to know if your seeds are of sufficient strength.

I have not tried this way with anything other than RC seeds.

Know your mind know yourself and be carefull out there.

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Matty - My hubby went up to 3gr of shrooms and things only got worse so he went back down to 2gr. Then tried the combo 1gr. of shrooms with 30 RC seeds, after that he got for 1 week a good day then a bad day, then a good and so on...

Ron - It is very scary right now but I don't think going to the er will help! We have been there before and there isn't much then can do except giving him prednisone which doesn't help much anymore. November 10th he is finally seeing a top neuro at a big Neurology Institute! Hopefully they can help!

MJ - Thank you so much for taking the time to share your experience and idea! Makes a lot of sense and it has given us more hope that this could work :) My hubby read it and is very willing to try it. Cause like you larger dose seem to make it worse!

Before he became chronic a year and half ago he would get ha's on both sides. But since starting the meds he always had them on the left. Then when he started to bust with shrooms the ha's slowly started to switch side. Now his reg. side is better but the other side is getting worse and worse!?

Today he wasn't better so he took a zomig to get relief. I know it's unusual but he usually gets 12 hours of relief with zomig! This should give him a break from all the pain he has been through the past weeks.

Don't know when he will bust again but when he does it is diff. going to be with the RC seeds.

Thank you again everyone for your kind words and support!

Will keep you posted  :)

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It is pretty natural I think with different sides of our head affected, I myself get hit during CH bour on right side, but I tend to get shadows and small hits left side which hurt more I must say.

I think it is the way our human body works, if you looked up brain structure, both left and right halfs of it control seperatly right and left sides of our whole body, for example right eye is connected to left hemisphere and left eye to right hemisphere, but centran nervous system and bridge on top of brain connects both halfs :)

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Hi David and thanks for asking - He is doing better since going back on Zomig he gets 10 to 15 hrs of relief with them. He just needed a break from busting. He was getting hit every 2 hours during the day and every hour at night all above kip 7 even 4 days after busting and he was only getting worse! I know it's normal to have post dose hits but this was insane!

Now I don't know what to think of all this....should he try again or not ? Does this mean busting won't work for him? He hasn't tried LSA seeds or LSD yet so I'm reading as much as I can to figure out the best plan for him.

We won't give up..

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Now I don't know what to think of all this....should he try again or not ? Does this mean busting won't work for him? He hasn't tried LSA seeds or LSD yet so I'm reading as much as I can to figure out the best plan for him.

Reread MJ's post above.  :)

Bob

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Not to be a downer but Prednisone is bad stuff!!! I have avascular necrosis caused by Prednisone! I had to have a total hip replacement years ago and will have related trouble forever. I would rather you learn from other peoples mistakes than from your own.

Lee Ann and I hurt for you and wish you two the very best.

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Alleyoop - Yes he will diff. try MJ's method  :)

Hipshot - No worries my hubby has no intentions of going back on Prednisone. Did you think that because of MJ's post? Because he means dosing with the RC seeds in same way as a Prednison taper..but it's not prednisone it's with the RC Seeds  :)

Right now he is just taking a break from all the pain he has been through by taking zomig but he intends on detoxing again soon and trying the seeds.

Thank you all for your concern you guy's are all so amazing ! For now were are doing fine  :) His energy is back up he is eating and sleeping well !

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I'm sure I'd be going back to Zomig for awhile too Angel, if I was in your hubby's critical situation with the CH.

So glad that you're not giving up. With that attitude my money says you WILL find a good way out of this sh**storm.

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I am all for whatever we need to do to get some relief whether traditional meds or alternatives so I am thrilled to hear to hear the zomig is giving him a break and a chance to re-energize. While I like MJ's idea and may try myself I think I would go with a traditional 30 seed beginning dose to start and see how he reacts. I also have felt that the seeds are more effective for me than shrooms, but hard to say since we all react differently to different things and we are all experimenting on ourselves. My prayers are with you both and you truly are an Angel.

David

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Hope I don't jinks him but I'm happy to report that my hubby is doing incredibly well !!  Zomig are giving him 10, 15 and some days even 24 hours of Pain free time and in between the O2 works within 5 min. ! Maybe all the busting did the job after all or maybe it's because he hasn't had any alcohol for 3 weeks now...anyhow were enjoying life again !  :)

He is tempted to try the seeds but I'm a bit nervous because things are going so well now I don't want him to stir things up again....not yet !! I think we should wait a few more weeks and see if the Zomig stops working then he can start busting again and try to get rid of this once and for all ! It's up to him decide what is best, I will support either way!

Hope you are all doing well ! Checking in daily to see how everyone is doing !

Hipshot you sure make my hubby laugh....love the new song by the way  ;D

Wishing you all PFD  :) Big hug to all !!

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Hi Angel & Hubby

I'm popping in to share a bit of my own experience (that seems to fit in with what your hubby is experiencing).  I started a chronic cycle in May of 08.  Used the traditional medications up until May of this year (Mother's Day in fact :) To bust, I started out with the mushies, 1.5 g wait as long as I could and dose again.  The process seemed to be going well until about July when (just like you describe in your post) all hell broke loose and it was non-stop BOP for days and days! 

You know, it just about killed me mentally!  The thoughts get all twisted up inside you, I was devastated thinking "I'm the poor soul that this treatment DOESN'T work for!  It's the worst of the worst spots to be in in my mind.

I was in constant contact with several of the folks on the boards.  I too used something called promethezine (anti-nausea med) during the NON STOP BOP days to get relief.

I also tried SPUTs (small pieces under tongue) of mushies at the onset of an attack.  The 02 continued to work, but the hits came so fast and so strong, darkest 2 weeks I've ever known!  And it raged!!!!!!

I'm sure I would do it all again, but just can't believe how intense those post dosing hits can be.  For me, all the posts I'd read about this activity never really sunk in until I was in the throws of the busting battle.  Today reading through MJ's post (and yours too) I know I would try the taper approach to keep the receptor doors closed.  I was 2 full years into a chronic situation and believe that my body was fighting against changes I was introducing into my system.  It was like several battles were going on all at once....if that makes sense.

I damn sure hated my experience, but by August the days between attacks got longer and longer.  My last dose was Sept. 7th and I've been PF ever since.  42 days now!

I pray that your husband stick with dosing, you've come so far! 

Hugs,

Cindy

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Thank you Cindy for sharing your own experience and for your words of encouragement ! I'm so happy for your success, you are no longer considered chronic  :) I bet that must be the best feeling in the world  :)!!!

My hubby has been doing amazingly well  :) After weeks of busting non stop and going through hell the last few weeks with the post dose hits he decided to go back to Zomig (nasal spray) contrary to imitrex wish gave him very bad rebound ha's, Zomig has always given him around 12 hrs pf time, so he would take 2 a day! But now since busting he gets up to 48 hours relief with just 1 zomig. It almost seems like his cycle is ending ! And we know it can't be the zomig alone so were thinking that the busting did the work ! He just needed to take a break from it ! He is now getting better and better everyday  :)

If things get bad again he will try MJ's method next ! We still believe strongly in this treatment !

Big hug to you :)

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Very very relieved to hear that your hubby is getting sustained relief now after that most extreme trial by fire, Angel.  :)

And same goes for you and your incredible 42 days in a row now after having been chronic Cindy!!  :)

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Thanks Raquelinkansas and Bejeeber !  :)

Yay we are so happy that he is finally getting some pain free time ! We are enjoying every minute  :)

Crossing are fingers that this will last !

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