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Topic: Question about "alternitive" therapy (Read 10956 times) |
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Sophie
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Re: Question about "alternitive" therapy
« Reply #25 on: Dec 7th, 2004, 1:57am » |
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In regards to total detox, would you include melatonin?
I am a long time away from trying this, have to see how good I am at farming. PF--now--expect next cycle in April so hopefuly I will be ready. Also what about cigs.---caffine---sinus meds OTC---weed? Alcohol----chocolate---you know all the things the surgeon general doesn't reccommend. I intend to dose with the first CH--if all works out. I have gotten hit in the middle of winter---really hoping that won't happen----if it does---I may use melatonin---however it gives me a rash---must have some allergy to it.
I find your discussions very interesting and helpful---and hope to be able to contribute my own sucess story in the spring. Iwill fill out the forms at clusterbuster also.
Sophie
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Pinkfloyd
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Re: Question about "alternitive" therapy
« Reply #26 on: Dec 7th, 2004, 4:12am » |
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Heprat,
I believe Flash felt that, you being an episodic, and just beginning to look into this, and thinking of the time needed to grow them, ect. that you may want to wait.
If you don't have to wait to grow them, and are willing to detox from the meds you're on, considering the pred and imitrex are the two biggest culprits in blocking the effects of the treatment, it is certainly worth the try. Especially since you are, 1. early in the cycle, 2. Haven't been on the trex for long.
It does seem that the longer people are on imitrex, the tougher it is sometimes to break the cycle. But we don't give up the fight easily if we can help someone stop the pain early. Let us know if we can help.
BobP,
What do you tell people here when they come on board and say they tried 200mg of verapamil for a month and it didn't work? That the verapamil treatment was a failure so go back to sticking yourself 5 times a week with Imitrex, and forget the verapamil? Try it again next cycle but try 250mg?
If you think we haven't learned anything in the last couple of years, then by all means, do exactly as you did the last time you tried the treatment.
And as far as this eristic gem of yours goes "and you should donate your life savings to us and if you don't you're nuts. " .. no one ever asked this. We know that most people here have already donated their life savings to Glaxo.
Please check your tomatoes, as I do believe they are rotten.
Your dogs have no place here as we come in peace
Have a Merry Christmas
BobW
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Pinkfloyd
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Re: Question about "alternitive" therapy
« Reply #27 on: Dec 7th, 2004, 4:19am » |
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on Dec 7th, 2004, 1:57am, Sophie wrote:In regards to total detox, would you include melatonin?
Sophie |
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Melatonin is one of several things we list on the FAQ that is suggested to use preparing for, and during the detox period.
If you get a rash from it though, don't use a steroid cream to treat it during this detox time. Have a friend scratch it for you. 
Good luck Sophie,
BobW
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karma
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Re: Question about "alternitive" therapy
« Reply #28 on: Dec 7th, 2004, 5:49am » |
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It would appear that there is some old dirty laundry getting mixed up in this discussion.
Please for the sake of those that just want information leave the dirty laundry where it belongs.
Bob P
This discussion needs your experiences as well as others that have tried. It doesn't matter to me if it worked or not. We need to hear all the facts. Good, bad or ugly but just the facts.
Thanks for getting involved.
There is no wrong way to treat CH its just that some are better than others.
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Flash
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Re: Question about "alternitive" therapy
« Reply #29 on: Dec 7th, 2004, 6:40am » |
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I'm extremely fortunate in that the treatment is very effective for me. This affords me the luxury to bait the fucker. Worst case scenario I get hit with 5 days of pure hell with 4-6 x 3 hour long kip 10s every day... but that's only happened twice in 11 years and 22 episodes and it's way better than 1 month of standard CH every 6 months.
Interestingly I have NEVER had to detox because I don't take anything. Last time I took a prescription for CH was propanolol and amytriptylene back in April '95. During the 5 days of pure hell ooops' I've gotten scripts for methysergide once and maxalt once but never cashed them in.
So from all that experience I can conclude that for me preventative doses once every 6 months are the most effective, and they can be like 1/2g jobs.. Next up is when the shrooms are ingested right at the onset, very small doses also work here but occasionally a second dose is required a few weeks later. Lastly and least effective are small doses at the peak of the episode, one of these usually kills the thing 5 days later.
I've never actually tried the sip method yet. This will be the first time. The longest I can go between doses is 15 months.
on Dec 6th, 2004, 6:46pm, jminmilwaukee wrote:Damn Flash, taken one for the team huh? You have just proven beyond a "shadow" of a doubt that you are truelly more dedicated than most. I'd be willing to let mine come back should the timing coincide with the study but gotta honestly tell you that avoidance is first on my list of priorities!
I was, however, successfull with the sip method a couple of years ago. The effect of clearing was extreemly eficient and complete, about 10 to 15 minutes total from the initial onset of a shadow. Of course you do know (of course you do) that avoiding is MUCH easier than aborting but hell, someones gotta do it right?
Good luck,
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| « Last Edit: Dec 7th, 2004, 6:41am by Flash » |
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Renee
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Re: Question about "alternitive" therapy
« Reply #30 on: Dec 7th, 2004, 8:19am » |
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I found the sipping method as a very good way to detox. I sipped while detoxing to keep the pain under control. Once my detox period was over I (recently) hit with 1.5g and now LOVING my pf time.
While I may have to dose again to knock the beast out, as I feel he has been gravely injured but still lurking somewhere, I'm sleeping like a baby all thru the night and living life without the beast ruling me.
Note: I was very scared to try the alternative treatment. The worst about the entire treatment is the fear of the treatment itself.
Good luck to all and Happy Holidays!! 
modified to add: 22 year sufferer with last 8 years being chronic.
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| « Last Edit: Dec 7th, 2004, 8:20am by Renee » |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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heprat
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Re: Question about "alternitive" therapy
« Reply #31 on: Dec 7th, 2004, 9:00am » |
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I'm going to attempt a reply in a brief moment of assumed clarity. Evenings filled with visits from the beast followed by days of shadows tend to clog my mind resulting in ramblings, begging for mercy and lack of will to do proper research. I think my previous post reflect this.
I have been reading for three days straight. My plan of attack, for what it is worth, is this....I plan to stop using the trex (for more reasons than just the detox), sustain soley on O2 (went through a whole e bottle last night), and continue to persue locating a source of alternative treatment. I will attempt, after a minimum of 7 days post trex, the sip method at 7 day intervals, once again sustaining on O2. If it works...great...if not...at least I tried and the beast will eventually tire of me and move on. I then plan to farm and enter into a preventive 6 month schedule of dosing. Yes Flash...next time I will be prepared.
I don't fear the treatment. I fear not being around to see my babies grow up. I fear my 4 year old seeing his poppa become a sobbing baby.
Thanks to everyone for participating in this great discussion.
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nani
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Re: Question about "alternitive" therapy
« Reply #32 on: Dec 7th, 2004, 9:06am » |
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Quote:I fear my 4 year old seeing his poppa become a sobbing baby.
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I know it's hard for our kids to see us get hit, but I think it's actually good for a boy to see his Daddy cry. It shows him that men can cry, too. I hope you get some PF time hep...and Sophie...and everyone!
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Bob P
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Re: Question about "alternitive" therapy
« Reply #33 on: Dec 7th, 2004, 9:48am » |
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Quote:| We need to hear all the facts. Good, bad or ugly but just the facts. |
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Yep. The old Dragnet saying, just the facts mam, just the facts.
Detox:
How many people did the treatment not work for because they weren't detoxed?
How many of those did it subsequently work for after they detoxed?
Was the success because they detoxed or was it simply because they needed multiple doses?
Quote:| What do you tell people here when they come on board and say they tried 200mg of verapamil for a month and it didn't work? That the verapamil treatment was a failure so go back to sticking yourself 5 times a week with Imitrex, and forget the verapamil? Try it again next cycle but try 250mg? |
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Nope. I tell them the same thing I do about shrooms. This is what the docs say about verap or this is what busters say about shrooms. Neither worked for me. Not sure where you came up with the stuff in the quote above.
It's really not that hard to admit that shrooms don't work for everyone.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Flash
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Re: Question about "alternitive" therapy
« Reply #34 on: Dec 7th, 2004, 10:16am » |
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on Dec 7th, 2004, 9:48am, Bob P wrote:| It's really not that hard to admit that shrooms don't work for everyone. |
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It has not been established whether or not that is or isn't the case yet. In your case there was only one dose prior to starting predisone. So unless you're suggesting that shrooms must work on the very first dose???
In order to establish whether shrooms do or don't work for everyone we must first establish the optimum ranges for the following parameters:
point in the cycle to commence the dose
doseage
time(s) of the day to dose (including with or wothout food)
frequency of doseage
pattern of the dose (ramp up and taper etc)
number of doses
any drugs or other factors that may interfere with the treatment
These will vary slighty from individual to individual that's why I've used the term 'range'. At present our smallest dose is 40 times smaller than the largest, the highest frequency is 3x each day and the lowest once every 15 months.
The only way to establish this is to start with a clean slate and systematically try every combination within reason and likely safety margins. You did start with a clean slate but then decided to throw predisone and sumatriptan into the mix, then abandoned the treatment after 4 substantial but infrequent doses.
Your result does not tell us that the shrooms don't work for everyone, only that this particular attempt did not work for you. Perhaps under different circumstances it will work for you.
BTW it is impossible to prove that something works for eveyone unless everyone past, present, and future is tested.
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Bob P
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Re: Question about "alternitive" therapy
« Reply #35 on: Dec 7th, 2004, 11:08am » |
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Quote:I believe the point that is trying to be made here is that they do not work or tend to be less effective when done in a half assed manner.
Of course I could be wrong.
For those of you looking for the straight facts without the agenda, please visit clusterbusters.com. |
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The point I'm trying to make here is that the info at clusterbusters.com and the things professed here have a lot of assumptions and theorys mixed in with some facts. Since web sites and web surveys have their own demographics, they can be biased. You really can't say how effective the treatment is nor what the correct method of use is until a real double-blind type trial is executed.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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heprat
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Re: Question about "alternitive" therapy
« Reply #36 on: Dec 7th, 2004, 11:46am » |
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on Dec 7th, 2004, 9:06am, nani wrote:
I know it's hard for our kids to see us get hit, but I think it's actually good for a boy to see his Daddy cry. It shows him that men can cry, too. I hope you get some PF time hep...and Sophie...and everyone! |
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I get your point and I agree...but I'd rather him see me cry because my dog died or I hit my thumb with a hammer than because the beast was throwing me around the room.
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Flash
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Re: Question about "alternitive" therapy
« Reply #37 on: Dec 7th, 2004, 11:56am » |
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on Dec 7th, 2004, 11:08am, Bob P wrote:
The point I'm trying to make here is that the info at clusterbusters.com and the things professed here have a lot of assumptions and theorys mixed in with some facts. Since web sites and web surveys have their own demographics, they can be biased. You really can't say how effective the treatment is nor what the correct method of use is until a real double-blind type trial is executed. |
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Until that takes place this is the best we have to offer, and like monkeys with typewriters we would ultimately get there in the end. In this instance the powers that be were so impressed with the monkeys plot outline that they've decided to turn it into a small budget production... funded by the monkeys. If this proves successful then somewhere down the line someone might decided to produce a bonafida blockbuster. Until then we'll keep typing.
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Bob P
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Re: Question about "alternitive" therapy
« Reply #38 on: Dec 7th, 2004, 2:48pm » |
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Not taken as a jab but it would be much more believable if it included answers to these:
Quote:Detox:
How many people did the treatment not work for because they weren't detoxed?
How many of those did it subsequently work for after they detoxed?
Was the success because they detoxed or was it simply because they needed multiple doses? |
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How you can say, Bob P took pred after his first dose so that's why it didn't work, seems to be grabbing at straws. Now if you could say 50 people took pred after their first dose and it didn't work for any of them, they then detoxed, dosed again and it worked, that would be a little easier to believe. Even then you could also say that these 50 people just needed two doses and the pred had nothing to do with it. That's what I'm talking about when I speak of facts verses assumptions.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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karma
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Re: Question about "alternitive" therapy
« Reply #39 on: Dec 7th, 2004, 3:58pm » |
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This whole discussion has evolved into degrees of affectivness and the lack of accurate records. Not one mention has been made of any harmful side affects.
No rebounds, no blocked up plumbing, no brain damage, no liver or kidney damage, no bone deterioration, no draining the bank account, no waiting to get useless scripts from uninformed doctors etc. etc.
There is of course the legal issue. But that is a minor detail.
What it comes down to is that is has proven highly affective for chronics that got no relief elsewhere and episodics that wanted nothing to do with pharma. meds.
The one person that has responded here that the treatment didn't work for is willing to give it another try.
Sound pretty damn positive to me.
BobP this arguement about dosages and regimes can also apply to people using Lithium, topomax, verapamil, triptans and a whole dictionary of other Pharma. meds.
The common theme amongst almost all people here is that "it works for me but it may not work for you" And "if that dosage doesn't work it may need to be adjusted" or the one I hate to hear the most "if this doesn't work I don't know what I'll do"
I can understand your attitude though. Some of the comments although I'm sure well intentioned, come across as pretty militant.
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Bob P
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Re: Question about "alternitive" therapy
« Reply #40 on: Dec 7th, 2004, 4:14pm » |
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The only side effects I had from dose #1 was about 4 hours of chills, hand tremors and a good deal of anxiety.
Other med side effects:
Verap locks me up tighter than Fort Knox.
Cafergot gives me constant cold fingers and toes.
Pred makes me a little irritable but I only use those 6 day dose packs.
O2 dried the heck out of my throat.
Of all of these, which is worst? Verap.
No ill feelings in this thread. I just like to keep 'em honest and if I have to play Devil's advocate, I enjoy that too.
lyg
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Jonny
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Re: Question about "alternitive" therapy
« Reply #41 on: Dec 7th, 2004, 6:28pm » |
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No one thing works for everyone, no matter how you slice it...that is how it is and will always be.
Now someone pass me my Lithium.....LMMFAO
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karma
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Re: Question about "alternitive" therapy
« Reply #42 on: Dec 8th, 2004, 6:28am » |
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No Jonny, That is not how it always will be. Progress is being made.
Like I said there is no wrong way to treat CH its just that some ways are better than others.
Not everyone has access to rediculously costly meds. Not everyone beilieves that the pharma meds are the way to go.
Even the docs don't know what works and what doesn't. Yet they want to play god and poison people with meds. that may or may not work. They want to refuse treatments like 02 that have a high success rate and prefer meds that they make money on.
The fungi treatement is a real and effective treatment that works for far more than it doesn't. However, it is still not accurately known how much or when, will be most affective. Sounds allot like all the other meds that are prescribed but with minimal cost and almost zero side affects.
WTF at least it won't kill you and all you got to gain is being pain free.
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Flash
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Re: Question about "alternitive" therapy
« Reply #43 on: Dec 8th, 2004, 10:01am » |
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on Dec 7th, 2004, 3:38pm, jminmilwaukee wrote:I tend to forget that the folks who are not included in the buster threads do not see the continuous stream of data supporting these "claims" of success without meds including the lack thereof while on these meds.
I cannot tally the true facts and can only tell you what I have seen from a purely unscientific perspective of PF case after case. |
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This point is worth reiterating. ClusterBusters have their own very busy forum with over 100 people contributing details of their every attempt at this treatment. We tend to forget that people on CH.com have not seen all the subsequent failures involving predisone, for example.
At present there are approx 10 ClusterBusters filing active reports. This number grows as the group increases. Some Busters are sipping, some are taking weekly doses, some are reporting missed episodes due to preventative doses. We have several on-going chronics that are all reporting varying degrees of success. In some instances people are experiencing a substantially lower level of CH activity and while they are not 100% PF they are med free apart from the shrooms. So we now know that shrooms can at the VERY LEAST provide a safe and effective way to manage the condition.
The doctors in charge of the proposed Harvard and McLean hospital study are also active members of the group and post in our forum. They are up-to-date with every attempt that we make to treat ourselves. So we do have quite a lot of information at our fingertips.
Please be aware that the ClusterBusters forum is extremely focused on the treatment... there's much less trivial or off topic posting. Pretty much everything posted there relates to treating CH with hallucinogenic drugs. We also discuss aspects of the treatment that may not be considered suitable for a public forum - I guess that's the main reason for the existence of a seperate private forum. Many of the ClusterBusters do not bother to post to both places so some of us hang out here to keep everyone updated and look out for anyone that's embarking on this treatment.
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| « Last Edit: Dec 8th, 2004, 10:02am by Flash » |
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Renee
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Re: Question about "alternitive" therapy
« Reply #44 on: Dec 8th, 2004, 7:51pm » |
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Case #160.
chronic 8 years 
now med free 
working on being pf
Having very restful nights and enjoyable days like I haven't experienced since before Clinton came into office.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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catlind
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Re: Question about "alternitive" therapy
« Reply #45 on: Dec 8th, 2004, 7:59pm » |
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Sophie, I'm in Omaha Nebraska. Feel free to IM or email me if you'd like to meet another clusterhead and learn about the busters..
Cat
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Sophie
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Re: Question about "alternitive" therapy
« Reply #46 on: Dec 9th, 2004, 1:33am » |
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Catlind
Thanks for the offer---I'll probably have alot of questions----I've only know one other girl that has CH in this area----other than that I have never talked to anyone in person, that really has a clue what it's all about. Bet you never heard that before! Sophie
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miapet
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Re: Question about "alternitive" therapy
« Reply #47 on: Dec 9th, 2004, 9:36am » |
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It only takes one or two people who it 'didn't work' for, to make them think it won't work for anyone . .. or to make sure they slam the chance for anyone who it might work for.
I researched and researched and researched. D had tried every drug (except DHE) and wouldn't go for surgery. NOTHING worked. He was so burnt out on trying things, and he had no faith that anything would work. When I came to him with this idea, he was more than skeptical, but he had placed the 'fight against the beast' in my hands, so he went along with my plan.
Did the first dose kick the beast to the curb? No. Did it totally phuck up the beast, including taking away it's 'signals' and it's regular schedule? YES. Did it freak us out?? YES .. .did we give up? NO. Did the second dose kick the beast to the curb? Yes and No. It wasn't right away . . .it took a week or so . . .but the beast faded away . . .
Could we have said 'It doesn't work' and given up after the first time?? Of course we could have. But, what the hell, 20 years of being a guinea pig for 'doctors' to practice on, what was a few weeks going to cost us, other than the potential for being p/f.
We are more than thankful that we tried this treatment. We are more than thankful that Flash, Pinky, PF, and all the other busters who were brave enough to try this treatment and were even braver to post their results and help others who wanted to try it.
*positive light and energy*
miapet
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1MajorPain
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Re: Question about "alternitive" therapy
« Reply #48 on: Dec 9th, 2004, 10:40am » |
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All I know for a fact is that shrooms worked better than anything I have tried in the past! The 30 years of meds the doctors gave me almost killed me and for sure have caused some major health issues I'll have deal with forever. You can bet I'll be loaded and ready to fight the beast as soon as he raises his ugly head!
Major
still headache free
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Bob P
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Re: Question about "alternitive" therapy
« Reply #49 on: Dec 9th, 2004, 11:11am » |
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Quote:| It only takes one or two people who it 'didn't work' for, to make them think it won't work for anyone . .. or to make sure they slam the chance for anyone who it might work for. |
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Since I'm the only one in this thread who it didn't work for, I assume you're referring to me. Well you're off base since I encourage people to try it. I do think they need to know, before they go off their other meds and risk enduring lots of pain, that it may not work for them.
Like Karma said, people need to know the good and the bad so they can make an informed decision.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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