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sevim
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Mushroom advice - impossible
« on: Dec 25th, 2006, 11:13am » |
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Hello Guys,
Sevims husband, Nic here. Thanks for the advice and response to the various posts so far BUT....
I really cant understand the advice about the mushrooms. Dont take zomig for 5 days prior to, and 5 days after dosing?? 10 days without medication, you have to be joking, this is not possible. I have never been 10 days without zomig. So how does any chronic suffer manage to not use zomig for 10days while they dose? It is not possible in my condition. I cant understand how everyone is saying this. Is this because everyone is episodic not chronic. Has any chronic suffer actually managed to do 10 days no zomig, if so HOW? What methods did they use? What else did they do? If I use only oxygen the headache returns an hour later, and continues to do so until I take a zomig, how does one counteract this effect???
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Redd
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Re: Mushroom advice - impossible
« Reply #1 on: Dec 25th, 2006, 11:57am » |
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We never said it was easy....
I am chronic, have been since I can remember. I can only relate what I did, and how I did it.
I'm wasn't a zomig user, but Imitrex injection, and on Verapamil and Topomax.
I slowly tapered off the Topomax first, then off the Verapamil, using only the jabs as my abortive. I had 8 days of sick time coming to me, so I planned it out where the time off also spanned 2 weekends which gave me a total of 12 days off work.
It took alot of personal reflection, and dedication to put myself in the frame of mind to tough it out. Over the course of the 5 day detox, I was misserable, but I stayed the course. Cold packs, hot showers, lots of water, you name it I coped. Some days better than others, but I coped and got through it, and on day 6 I dosed.
Jump ahead to the present. I'm still chronic, PF days (no major attacks, still shadows and twinges to tell me it's still there, but I'm not giving up) have slowly increased over time and mantainance doseing to 26 days now and counting.
For Me....it was committing to not taking anything for the hits. I had to put my mind set back to the days before I was diagnosed, and before I had that instant relief at my fingertips with the imitrex. I survived the attacks then, I could do it again. I had to convince myself of this without hesitation.
I had no O2...but I still detoxed and have managed to get some modicum of control over this beast in my head, and have my life back. That was worth a few days of hell, and also the knowing that no matter what, I was bigger than the beast. It was up to ME to achieve that frame of mind.
Please keep us posted.
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E-Double
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Re: Mushroom advice - impossible
« Reply #2 on: Dec 25th, 2006, 1:27pm » |
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I'm chronic and do not use any meds.
Just O2.
Tis is not to say that I will never again, however it is much easier for me now that I am med-free.
I started detcoxing once my wife finally supported me trying to "bust" I soon realized that after I was off all of my meds things got so much easier so I never did it.
I have high and low cycles but it still easier for me to just deal than take the meds and feel the side effects.
It is possible.
Good luck and know that if you follow the "rules" to busting than you are more likely to find relief than if you mess with the meds while doing so.
It's worth it in my book.
E
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MJ
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Re: Mushroom advice - impossible
« Reply #3 on: Dec 27th, 2006, 2:40am » |
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Hi Nic
It is not only possible, you just may find if you can get through a day or two that it is actually beneficial to be off the meds.
The hits are cleaner and mentally easier to deal without medications to fog up the mind.
I was getting from 8-12 major hits a a day and for over ten years I used no meds at all following 20 years using every medication under the sun. Simply because I found that most all meds actually made the CH less bearable
I cant advise on the shrooms but I did finally find relief with similar treatment with LSA (RC seeds) not just individual attack relief but actuall termination of my cluster cycle.
I am not sure if this would have been the same had I been medicating otherwise. The knowledge available says not.
It is possible and definately worth it. remember the hits only last a short time in comparison to being pain free.
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kcopelin
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Re: Mushroom advice - impossible
« Reply #4 on: Dec 27th, 2006, 8:43am » |
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Hey, I'm also chronic with between 3 nd 6 hits a day. I only get 6 Zomig a month from the VA-so I consistently go more than 10 days without an abortive, I'm always thinking I should save these precious few for the really big hits-9 or 10. So, in answer to your question. water, ice packs, walking outside in cold air, O2 (although it has really stopped working I still try it once in a while (with a cluster masx) I Think O2 is probably the best answer if it works for you. I've not tried the mushrooms, but it appears that detoxing is pretty important to the process.
Best of luck!
PFDAN y'all,
kathy
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Brew
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Re: Mushroom advice - impossible
« Reply #5 on: Dec 27th, 2006, 9:25am » |
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It has something to do with the serotonin uptake in the hypothalmus. If you don't do the detox thing, the shrooms won't work because their molecular magic is locked out by the other meds. They have to be really gone from your system before it will work. It has nothing to do with chronic vs. episodic.
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Pinkfloyd
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Re: Mushroom advice - impossible
« Reply #6 on: Dec 28th, 2006, 12:12am » |
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on Dec 25th, 2006, 11:13am, sevim wrote:| 10 days without medication, you have to be joking, this is not possible. I have never been 10 days without zomig. |
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Hi Nic,
This could be why you're chronic.
It is possible to go without zomig. I know of hundreds that have done it and I assume hundreds others have, that I don't know about.
on Dec 25th, 2006, 11:13am, sevim wrote:| So how does any chronic suffer manage to not use zomig for 10days while they dose? It is not possible in my condition. I cant understand how everyone is saying this. Is this because everyone is episodic not chronic. |
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Chronic's do it the same way episodics do it. What makes you think it would be any different or easier for an episodic to do it during a cycle?
Most episodics (including those that used to be chronic before starting shrooms or LSA) end up dosing between cycles also, but after they've detoxed and broken a cycle. Detoxing for episodics isn't any easier, or harder, than it is for chronics.
on Dec 25th, 2006, 11:13am, sevim wrote:| If I use only oxygen the headache returns an hour later, and continues to do so until I take a zomig, how does one counteract this effect??? |
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Try staying on the 02 a little longer after the attack ends. It may help. Also, slowly back off on the 02 instead of just stopping when the pain ends. Crank down the regulator a couple notches at a time. The rapid return to "room air" may be causing a rebounding effect.
1. You may be surprised that stopping the zomig may not be as bad as you might think. Many people find it easier and the number of attacks actually goes down. Yes, some go thru hell (we're all pretty close to hell anyway before the detox) but the vast majority have an easier time than they'd expected.
2. Even if it IS bad, most think its well worth it. Especially chronics. 10 days of hell to break a cycle? How many days (years?) of hell are you looking at in the future now, without the possibility of breaking the cycle through the detox/treatment?
3. I fully understand why people that have a good regimen that provides good relief, generally, and can make it through the day quite well, without attacks completely disrupting their work, and life, would want to wait. But if you're using that much zomig....and 02...and who knows what else, and still having a rough ride, *I* think its worth a try.
Sevim has my email addy....any questions, just ask. If you want me to call, just send me a number.
For more ideas on how to cope during the detox period, check the mushroom FAQ again, and read the detox section. By the time you've tried all the options, you'll be detoxed. And a lot of them help a great deal. Some better than others, but you won't know which ones work the best for you, until you try them.
Bobw
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chopmyheadoff
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Re: Mushroom advice - impossible
« Reply #7 on: Dec 28th, 2006, 9:43am » |
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on Dec 28th, 2006, 12:12am, Pinkfloyd wrote:
Hi Nic,
This could be why you're chronic.
Bobw |
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 not sure about that . . .
id sqay your a lot braver than me if you decide to go 10 days with no meds.
i think if i was going to do that then i would have to have none in the house.
there is no way on gods green earth i could sit enduring a 7+ knowing instant relief is in the drawer, and not take it . .
im actually laughing at the thought as i type
more power to you tho bro, your stronger than me if you can manage it. i really hope it works and its not in vein tho 
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Pinkfloyd
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Re: Mushroom advice - impossible
« Reply #8 on: Dec 28th, 2006, 11:20am » |
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on Dec 28th, 2006, 9:43am, chopmyheadoff wrote:
not sure about that . . .
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There are studies out there that show that both triptans and verapamil can/do make cycles longer and make them worse, frequency-wise.
on Dec 28th, 2006, 9:43am, chopmyheadoff wrote:
id sqay your a lot braver than me if you decide to go 10 days with no meds.
i think if i was going to do that then i would have to have none in the house.
there is no way on gods green earth i could sit enduring a 7+ knowing instant relief is in the drawer, and not take it . . |
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I know it's not easy, to say the least, and a cross between a giant leap of faith, desperation, anger, frustration with prescription meds....you name it.
But...many people do it.
When you're getting hit 8 or 10 times a day/night, whats the big deal about stopping one of them? So you only suffer 7 or 9 times a day/night?
With no end in sight?
It used to be that many doctors would ask people to do a complete detox anyway, just so their medications would start working agin, or at least to work a little.
People used to be on Sansert and have to go THIRTY days without it, and that was before/after Imitrex.
I know how difficult it is to look at a shot of imitrex or DHE, sitting there and try to get through a #10. It's not easy, but I don't think bravery has anything to do with it. Maybe I was a wimp and looking at another 20 years of clusters, scared me more than 10 days without meds.
BTW, it's not 10 days without meds for me.....it's more like 5 years and counting, without meds.
Bobw
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karma
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Re: Mushroom advice - impossible
« Reply #9 on: Dec 28th, 2006, 12:00pm » |
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I'm sorry I can't remember who it was but somebody here recently wrote that they had never ended a cycle while on prevents.
I know it doesn't apply to everyone but this simple sentence struck me as very telling of how dependent we can get on medications even when they may not be working or worse, doing us more harm than good.
There are tough choices to make until you make the one that is right for you.
I went from nothing for 15 years (painful but short) to Verap, pred and Zomig for one cycle(more painful and felt like shit for months) to R.C. seeds (short and only a handful of disruptive hits)
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Redd
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Re: Mushroom advice - impossible
« Reply #10 on: Dec 28th, 2006, 12:14pm » |
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Ok....
29 days and counting without a hit that ranks above a K-4.
I think...no wait...I KNOW it was worth it to me. No insurance, chronic for 22 years, and things were only getting worse and worse.
Verapamil was drpping my BP way too low on even a minimal dose. Topomax had me brain dead, and at risk of loosing my job. Not because I would still get hit at work, but because I was unable to function mentaly when I wasn't getting hit.
Imitrex..what can I say, there was never enough, even when only using it when I was at work, and riding out the rest.
No end in sight, and I couldn't stay on the medication assistance program forever, and there would be no way to file for disability and keep food and roof while it went through the red tape.
I had to do "something" different. I had 2 teenagers that needed me, and I needed to take care of myself in order to take care of them.
Ask Vig, and BobW. It took me some time to make that "leap of faith". And I'll never regret it.
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JeffB
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Re: Mushroom advice - impossible
« Reply #11 on: Dec 28th, 2006, 2:03pm » |
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Verap has held my pain at bay for about 2 years since I went back on it. Be careful about what you choose to do. What works for some may not work for all.
I have no idea what "bad effects" verap has had on people, it was a miracle for me.
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thebbz
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Re: Mushroom advice - impossible
« Reply #12 on: Dec 28th, 2006, 10:10pm » |
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 Couldn't have done it without 02. Couldn't have done it without coffee.  Failed trying it.....  did it again.  I'm pretty much a woosy.  If I can do anyone can.
 It's a personal choice. I would do it again. I cant ignore the results 
Dont forget to breathe.
all the best
jb
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chopmyheadoff
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Re: Mushroom advice - impossible
« Reply #13 on: Dec 29th, 2006, 4:37am » |
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on Dec 28th, 2006, 11:20am, Pinkfloyd wrote:
There are studies out there that show that both triptans and verapamil can/do make cycles longer and make them worse, frequency-wise.
bobw |
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i appreciate that but saying that taking a med is making him cronic is a bit of a bold statement. . .
@jeffb - couldnt agree more
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E-Double
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Re: Mushroom advice - impossible
« Reply #14 on: Dec 29th, 2006, 6:03am » |
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on Dec 29th, 2006, 4:37am, chopmyheadoff wrote:
i appreciate that but saying that taking a med is making him cronic is a bit of a bold statement. . .
@jeffb - couldnt agree more
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It really isn't bold.........
Quote:Headache September 1, 2005 - Volume 45, Issue 8
Change in frequency pattern in cluster headache induced by subcutaneous sumatriptan.
Gupta VK |
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Even PG who doesn't say anything on record until it has been studied, SUGGESTS that verapamil may extend a cycle.
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| « Last Edit: Dec 29th, 2006, 6:05am by E-Double » |
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Pinkfloyd
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Re: Mushroom advice - impossible
« Reply #15 on: Dec 29th, 2006, 10:31am » |
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on Dec 29th, 2006, 4:37am, chopmyheadoff wrote:
i appreciate that but saying that taking a med is making him cronic is a bit of a bold statement. . .
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Well, it would be bold IF I had said that it IS making him chronic. I didn't say that though. I said it COULD be making him chronic.
Is it bold to tell the truth? Sometimes it is here.
Bobw
(thanks E-D, Happy New Year)
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Re: Mushroom advice - impossible
« Reply #16 on: Dec 29th, 2006, 11:03am » |
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A bit off topic but since I am nearing the final stages of coming off a fairly high dosage of Verap (1080) daily combined with Neurontin neither of which helped in the least with headaches. I can say that it sure puts you through some crap on the way down.
Not to give anyone the wrong impression, I removed the Neurontin from the mix 1 1/2 years ago as it was making me a zombie, same as Topomax had.
As of this AM; I am at 200 mgs. daily ( a 120 ) in the morning and a half of one at night. I am on day 6 of detox from all other drugs ( except caffeine ) but I have cut that down to 1 cuppa in the morning. I even threw in the 30+ yr cigarette addiction.
I guess what I am trying to say is if you have a need or desire to detox it can be done! It sucks, but it is do-able. I have given the doctors and the drug companies 20+ years to help me including 2 surgical procedures and they have done NaDa!
Come 2007 there is going to be a new Sheriff in town
Good luck and my best to all......Tim
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sailpappy
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Re: Mushroom advice - impossible
« Reply #17 on: Dec 29th, 2006, 11:21am » |
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I have to agree with Tim, one of the biggest mistakes I ever made was to fall back into the mindset that a medication could or would help with these attacks enough to justify giving up my "Drug Free" approach.
I am what might be considered a Severe Chronic Sufferer and the biggest step you can take is making your own mind up to not use medications, especially if, like when I used them, they were totally inaffective and created all kinds of other issues that you have to deal with.
I have ben off all medications for over 2 years now and have no intention of ever going back. You can deal with the attacks as long as you don't allow yourself to fall into the self pity zone. My clusters are never less than 8+ and I would say more than not they are 9's every time.
However when the attack is over, its over until the next one, no drug hangover, no worrying about keeping a supply and no addiction problems!
I have been through just about ever known medication and Mushrooms are one of the treatments I have not and will not try. Thats just a personal choice and I am by no means telling you that you should not try it, just that if you really want to find a medication that works, you cant cloud the mix with several new ones at one time! Pappy
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MJ
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Re: Mushroom advice - impossible
« Reply #18 on: Dec 29th, 2006, 12:36pm » |
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on Dec 29th, 2006, 11:21am, sailpappy wrote:
However when the attack is over, its over until the next one, no drug hangover, no worrying about keeping a supply and and no addiction problems! Pappy |
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Pappy's statement pretty much says it when it comes to being med free.
I realize its not the same for everyone and I used to envy those that found a workable medication., but no more,
Many of us that get hit hard and often have found the drugs we hoped and believed were helping were not.
There is a point that it is realized, often after years and once realized for some of us it is difficult to take a drug for CH again knowing that a K10 can be worse than it is, even by using something as simple as tylenol. At the hi scale attacks the slightest fraction of a change in the degree of pain is enough to teeter well beyond the edge.
What I found and some others too that the meds that never really did anything for me anyways were actually making the pain more difficult. And the time between the hits depressing and anxiety prone waiting for the next one
I felt it was a much better life addressing the pain free times because that is where we live. You learn to capitalize on every available minute without pain wich is difficult while being medicated and this makes your will to fight through an attack much stronger under your own power.
I had resolved to live my life with CH as best I could and that meant not playing with the bodies chemicals with meds..
Then I found clusterbusters for one last attempt at losing the pain of CH and with the seeds I'm living better still.
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msussman
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Re: Mushroom advice - impossible
« Reply #19 on: Jan 12th, 2007, 1:38pm » |
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on Dec 28th, 2006, 11:20am, Pinkfloyd wrote:
There are studies out there that show that both triptans and verapamil can/do make cycles longer and make them worse, frequency-wise.
Bobw |
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Do you have a reference/link to a study which showed this conclusion?
I ask because during my last major cycle (3 years ago), my own experience seemed to indicate this was true...it was my first cycle using triptans, and while they provided total pain-relief that day, the next day the headache seemed even worse. The day after taking my 3rd triptan dose ever was the first time I showed the full-on partial Horner's syndrome - not just the crying and runny nose. Still, personal anecdotes aren't scientific evidence, so I'd like to read a paper which actually shows this.
I ask because it seems like I'm on my way into my next major cycle. The last two years have only seen shadows around this time of year, but I think this one is gonna be a biggie...got my first Kip 5 since my last major episode. Still, unless it gets worse I'm apprehensive to reach for the triptans as I fear it might actually *push* me into my next major cycle. If I hit Kip 6, though, all bets are off - the triptans are going down the hatch...
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Pinkfloyd
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Re: Mushroom advice - impossible
« Reply #20 on: Jan 12th, 2007, 4:58pm » |
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on Jan 12th, 2007, 1:38pm, msussman wrote:
Do you have a reference/link to a study which showed this conclusion?
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Well, I do, really, but I'll have to dig them out...secretary is on vacation
Now would be a perfect time to order seeds www.clusterbusters.com
If I lose track of this thread and forget to site the papers, send me an IM to remind me, please.
Bobw
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BlueMeanie
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Re: Mushroom advice - impossible
« Reply #21 on: Jan 12th, 2007, 5:59pm » |
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It's not impossible, but I can totally relate to what your saying. Episodic here, and never had CH below K7. Even though I went over 10 years before Imitrex, don't know if I could handle 10 days without.  Like Redd said, I'd have to take a week vacation just to survive.
I'm not sure about prevents, but speaking for (my experience) Trex, has not changed my cycle pattern at all. Some cycles longer than others, but also some cycles shorter than others. During cycle I take 3-4 1/2 shots a day 7 days a week. That's one thing that's so screwed up about CH's. Everyone is sooo different.
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miker6565
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Re: Mushroom advice - impossible
« Reply #22 on: Jan 13th, 2007, 4:46am » |
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I am new here and Have read about the mushrooms, I get my headaches usually in the fall,,this year late,,I've had 3 neck surgeries( in the last 12 years), I'm allergic to most pain meds, mine first started around 10 years ago,,ive coped with differnt pains both head /neck and stingers down the arms, I am also a recovering alchoholoic working on my 15th year,,so I personally kinda have an addictive personality,,use to race dirtbikes broke many bones,,Ive seen neurosurgeouns, pain mgt dr's, even sought phsycholical help,,
If meds work for ya thats awesome,,they didnt for me,,imitrex made my chest hurt so bad,,zomig made my legs swell like baloons,
was told i had migraines,tension headaches, sinus headcaches,wasnt till i went to web md and just by chance looked up cluster and found this site, not 100% sure i have ch but 99% acording to the test,i do get nausea on the kip 9+ not always,and sometimes my tooth hurts on the 9+ right below the the eye thats effected,
problem here in ohio is alot of dr's shy away from pain meds do to an oxycontin abuse problem,and both my neurosurgeouns have moved out of state do to malpractice insurence rates,
so coping has been my biggest asset... sometimes the knot on my head from bangin the wall hurts longer then the cluster, but i really try to avoid that,,i think o2 will work if i can get that going,,deep breathing definately does and the cold air walks do too,,i also seem to think im gritting my teeth in my sleep ,do to these,, as ive woke up with one chipped,and .......
the seeds ur talking about is that morning glories? I grow them ( heavenly blue),,i know some have used them for phychoactives ,,didnt know if thats what ur refering too...I just like the blue flower in the am...
right now im focussing on 02,, but its interesting to know that mushrooms got a high rating....
but i know all my differnt pains deep breething does help I'm trying to get into the Clevland clinic they have headache specialist and seem to be willing to work with me financially ,,100 miles away,,I'll know early next week,,just to make sure I have clusters,,,
I really dont think there migraines which i think the ocasional nausea messed up my diagnosis last few years....for one thing i know i cant lay down while im having these demons......
peace always Mike...
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| « Last Edit: Jan 13th, 2007, 4:55am by miker6565 » |
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"If at first you don't succeed,,Get out the hammer,,If the hammer don't work,,Go back to bed....."Have you hugged your kids lately?" Peace always, Mike
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karma
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I love YaBB 1G - SP1!
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Re: Mushroom advice - impossible
« Reply #23 on: Jan 13th, 2007, 8:03am » |
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Mike,
Morning Glory seeds will work but they are the least desireable of the three main choices.
"Morning glory seeds (certain strains). Contains some other chemicals with undesirable side effects. Seed hulls contain a chemical that produces cyanide compounds, and it is too hard to remove the hulls becuase the seeds are small and you needs dozens for an effective dose. Some commercial seeds are coated with pesticides. Can be effctive for clusters, but not recommended. "
for more info.
http://clusterbusters.com/faqlsa.htm
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miker6565
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Early Bird gets the worm? How about a Peanut? :)
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Re: Mushroom advice - impossible
« Reply #24 on: Jan 13th, 2007, 8:42am » |
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Thanks Karma.......very imformative link i saved it to my favorites.....those Hawaiian Baby Wood Rose seeds look interesting.....see what the clinic says i have for sure.......but thats worth inevestigating further im a nature,health food nut any way......the erowid link there is interesting too....thanks bunches.......peace always, mike
Shame the morning glories seeds are too undesireable i probly got a ton of them on the ground out there lol....
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"If at first you don't succeed,,Get out the hammer,,If the hammer don't work,,Go back to bed....."Have you hugged your kids lately?" Peace always, Mike
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