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Franko
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Hello, i am new to the site and would like some info on mushrooms. Iwas wondering if they really help.
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E-Double
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Re: need info
« Reply #1 on: Jun 5th, 2005, 8:21pm » |
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on Jun 5th, 2005, 8:05pm, Franko wrote:| Hello, i am new to the site and would like some info on mushrooms. Iwas wondering if they really help. |
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Hiya Franko,
How about a little introduction by ya....
I'm ____yrs. old
Been dealing with the beast for _____yrs.
Episodic or chronic?
The meds I have tried.
What worked.
What didn't.
I'm adding this here from your guest book entry.......
Quote:| 'm thirty one years old and had my first cluster headache on April 20th 2005. I was diagnosed with CH's one week ago. They have been intensifying since. When my awesoume wife and I found this website we both cried like babies. It's almost hard to imagine going through this for the rest of my life but the pain makes it beleivable. You know what I mean. It has been seventeen hours and twenty minutes since the last one. Does this mean I am in remission? Someone please let me know! I'm scared to death of what is going to mean for the rest of my life. Thank God for my wife. I'm so very happy I found this website. Thanks to everyone who takes the time to share. |
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because now we all have a place to start!  and because my original response was a little bit of me being a wise guy......
Going to give ya some good resources but also no that although many are not doctors we have centuries of knowledge among us and regardless what you choose as your treatment you should learn as much as you can.....
For you first question.....http://www.clusterbusters.com/
For more traditional treatments....
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Good luck amd stay strong!
E
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| « Last Edit: Jun 5th, 2005, 8:36pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Franko
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Re: need info
« Reply #2 on: Jun 5th, 2005, 8:43pm » |
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Hello, Well.... I'm 31 yrs old
Been dealing with the beast since April 20th
I don't know if I am episodic or chronic yet they haven't stopped since they started in April
So far: Imitrex nasal spray, lot's of lortabs (I hate lortabs but what can I do?), FRova, and a couple others
I've only been to the doc once since I was diagnosed.
Seems like only the Imitrex works when I catch it in time.
This is all new to me and I'm scared to death. I'm afraid depression may set in. Scared about my job and my families future.
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E-Double
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Re: need info
« Reply #3 on: Jun 5th, 2005, 8:56pm » |
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Try your hardest to stay as positive as you can!!!!!
Read as much as you can and learn!!!!
This does suck but there are definitely things you can do to make it an easier ride.
Big thing>>>>>DO NOT MIX TRIPTANS!!!!!!
This means that you should not take Imitrex within 24 hrs of taking Frova!!!!!!
THe CH will not kill ya but the mix of meds can do harm!
It is really great that you were able to get diagnosed so quickly.Many of us (myself included) have gone decades without treatment or being treated inappropriately because of misdiagnosis.
Stick around and leanr as much as you can.
The pain is frightful but know that it will end!!!
Hang in there bud and welcome to the family!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Franko
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Re: need info
« Reply #4 on: Jun 5th, 2005, 9:16pm » |
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Thank you for the info and hospitality. It is truly appreciated.
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E-Double
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Re: need info
« Reply #5 on: Jun 5th, 2005, 9:25pm » |
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do you just get them @ night or also during day?.....
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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wetdogtwo
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Re: need info
« Reply #6 on: Jun 5th, 2005, 10:54pm » |
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I've been fighting this beast for 15 years now and every time I start a new cluster, I am overcome by despair and helplessness, but like EE says, you have to stay positive. I'm very lucky to be just an episodic sufferer. Hopefully, that's the case with you.
Everyone responds differently to different therapies. Imitrex works great for almost everyone, but it's so damned expensive. I had mild success with Verapamil, but it's a pretty serious drug. Some people swear by oxygen but for me, it would only help some of the time. I even participated in a trial using a nasal capsaicin (red pepper extract) spray that I had success with, but most everyone on this board thinks it's bogus. Either way, the stuff I took is not available for cluster headaches yet. I happened to have very good results with mushrooms but melatonin didn't help me at all. Know that there are some reports that melatonin may hinder the efficacy of mushrooms.
My experience with mushrooms is that I took a 1/4 dose and would basically chew on them for as long as I could, swallowing tiny bits at a time on an empty stomach. Some people hate the taste; I don't mind it at all. I did experience mild psychedelic effects from the mushrooms and also I'd get gas (supposedly the tea version is easier on the intestines). But it actually aborted my headaches. I don't know if others have had similar success.
I did this during my current cluster and then started the kudzu treatment. I've been headache free for about two weeks now, but I don't know if it's because of the mushrooms or the kudzu. I decided to do both therapies because based on my research, the side effects seemed pretty minimal for me and I wasn't taking any other drugs. The mushrooms make me a little tired after I take them but I only did them twice. I haven't even noticed any effects from the kudzu (aside from being pain free) but if you plan to pursue this course, make sure you read the kudzu threads, especially if you've had any recent surgery or if you're taking any other drugs.
My best advice would be to research as much as possible before jumping into any new or alternative therapies. Starting with this site is a great start. The fellow CH-ers here helped me immensely. And of course, check with your doctor if you're going to mix therapies.
Hang in there and good luck. And share your experiences here, too, if you can.
Marty
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| « Last Edit: Jun 5th, 2005, 11:20pm by wetdogtwo » |
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Franko
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Re: need info
« Reply #7 on: Jun 5th, 2005, 11:27pm » |
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If I do decide to try alternative methods and I inform my doc she wouldn't report it would she? I think this site is great and all you guys are are a good distraction, even your arguements help. I know I'm new but thanks for everything you have and will do.
Frank
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Franko
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Re: need info
« Reply #8 on: Jun 5th, 2005, 11:36pm » |
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by the way Eric. I have been getting them everynight about 1/2 hour to 45 minutes after I fall asleep. I read on this site that they usually come during the REM period of sleep so I have been sleeping in my recliner so that I don't go into a deep sleep. Sometimes I can't help it and crawl into bed. So, I have them at night sometimes two or three times during the night and when I wake in the mornings. I also have them at various times during the day with no pattern. I have only had one today when I first woke and feel lucky for it. I know one is coming though. I just try to take it as it comes.
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wetdogtwo
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Re: need info
« Reply #9 on: Jun 7th, 2005, 11:23am » |
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I don't believe your doctor has any legal responsibility to turn you in. Doctor-patient confidentiality, etc.
Hopefully, your physician is more interested in your well-being than the legality of a few magic mushrooms.
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| « Last Edit: Jun 7th, 2005, 11:25am by wetdogtwo » |
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jokrs2
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Eventually He will make us pain free!
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Re: need info
« Reply #10 on: Jun 7th, 2005, 9:29pm » |
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Welcome Franko.
It is great that you have a supportive wife, that will make what you are going thru a bit easier. Keep the faith Franko. You are in the right place at the right time, and there is a great deal of info, help & support here. Since you have just recently started having the beast attack they may be quite irregular and hopefully so. There are some different triggers that may also be effecting you so dig around in here and ask alot of questions...the answers are coming. Blessing's, Joe
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Given strength, courage & a sound mind!
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BlueMeanie
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Re: need info
« Reply #11 on: Jun 7th, 2005, 9:49pm » |
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Hello Franko,
Welcome to the madhouse. Just my opinion, but you haven't had clusters very long to be trying alternatives. Don't forget they are illegal and dangerous if you're not familiar with them. (my opinion).
Please... as EE said, DO NOT mix triptans. Does the Imitrex spray work ? You do know there are shots that work faster ?
Anyway.... read as much as you can here on the boards, there are lots of possibilites to prevent & aborts for CH's. Have you read about oxygen ?
I understand you to be a little overwhelmed by this whole CH thing. There are many people here who have been dealing with this condition for years and years and years. Take it a little at a time and you'll be o.k.
Remember... CH's won't kill ya, and most likely you're episodic and they can end anytime soon.
Take care and welcome.
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bnfreeman
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Re: need info
« Reply #12 on: Jun 7th, 2005, 11:29pm » |
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Frank-
Like EE said it's great that you were diagnosed so quickly. It was over a year before I was. I have had them since October of 2003. I am not sure if I am episodic or not. Either the medicine I am on is starting to work or I am going into remission. Last summer they went away for a few months only. I thought it was another medicine I was on. Who knows. I feel so lucky to have found some support here. Right now my daily cocktail consists of 150mgs of Lamictal, Effexor, Naproxon and folic acid. It will probably be a lot of trial and error before your docs get it right. Best wishes!
BF
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Franko
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Re: need info
« Reply #13 on: Jun 9th, 2005, 11:23pm » |
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Hello everybody!
I really appreciate everyones responses to my questions.
Hey BlueMeanie, the Imitrex spray has worked only a few times when I catch the beast in time. Unfortunatley my insurance company doesn't want to authorize benefits for very many sprays at a time. They let me have 12 doses for a 25 day period. I can't afford the dang things without the help of my insurance.
So what is a person supposed to do? I have stopped taking all of the meds my doc prescribed. I have one Imitrex spray left. Amazingly I have had only one CH in the past three days. It came about noon today. I thought I was going to be ok for while and todays attack got me down just a little. But what the hell right? I'm still hopeful that they are stopping. MY job requires that I travel anywhere from one month to six weeks at a time. That makes it hard to visit my doc regular. I don't know if I can lug an oxygen tank around the country with me. I guess I should check into it anyway.
I can only imagine how much the Imitrex injections would cost. I do a lot of welding at work does anybody know if that could awaken the beast? Anyway I apoligize for rambling on. Just one last thing: I would like to say that I have tremendous respect for every person who has battled the beast for all these years. Your endurance courage and defiance in the face of what has to be one of the greatest beasts known to man is a tribute to the whole race. I thank all of you for the inspiration and and strength of heart that you awaken in me everytime I read your stories on this site.
Thanks and keep it coming! Franko
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BlueMeanie
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Re: need info
« Reply #14 on: Jun 9th, 2005, 11:54pm » |
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Hey Franko,
I know what you mean about the insurance thing. Sure sucks to not get enough meds. I really do hope your cycle is winding down now. Usually when you start getting those breaks like that it is almost over for the cycle. Just remember when they end, keep getting those refills !!! Us episodics learn to stockpile when not in cycle.
They do have small 02 tanks that can fit into a backpack. Problem is they don't last long. Many people here that don't have insurance use welders 02 instead. Do a search at the top of the page on welders 02. Jonny is our resident expert and can let you know the details on getting hooked up.
If you want to do the shroom thing, it works for many people. I was just cautioning you because of the legal aspects of it all. Seems many people are pretty open about it here.
PFDAN
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Chillrmn1
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Hey Franko,
Sorry you have clusters. You've found one of the most informative and knowledgeable sites for information on and treatment for clusters. You will find sufferers using various treatments and their results. You will also find great support. We are all different so what works well for one individual may not work well for the other. Of course, supervision by a medical professional is a high recommendation. Read as much as possible which is offered, including links shared to educate yourself. Lots of intelligent and experienced folks on this site. You will see lively or maybe argumentative debates take place here. This is not a bad thing for it brings out other viewpoints, benefits, and new ideas. As the old saying goes, take what you need and leave the rest. If you find a particular treatment which benefits your condition, please share this, for it may work for someone else, when nothing else has.
Here's hoping for your relief,
Bob
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Kris_in_SJ
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Re: need info
« Reply #16 on: Jun 11th, 2005, 9:15pm » |
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Hi Franko,
Welcome to the best family in the world. Eric (EE) and all above gave you great advice. Having insurance problems is probably the worst - but make nice friends with your doc's nurses, and the freebies may start flowing.
Please follow E-Double's links. At the very least, you need to be on a preventative like Verapamil. You can kill the HA with abortives most times, but you also need something to lessen the frequency and severity of them. Verapamil can cut your cylce way short!
Clusterbusters.com is your best resource for shroom info, though you'll find some good stuff on this board through searches - the latest is on certain seeds - sorry but I'm not in cycle right now, so am not up to date on what threads you should search.
I will say this - Trex injects are expensive but much more effective than NS. Plus, they can be split (see tip to the left) so can be used more often with the same effect. Also, being a welder has definite benefits regarding oxygen, as was noted above - contact Jonny.
Last word - I promise - Melatonin at bedtime can really help get you past those night hits. 6-9mg half hour before bed helps me and many others. It's all natural and available OTC at any drug store.
Sorry for the letter - PF Wishes and Hugs,
Kris
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BobG
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Re: need info
« Reply #17 on: Jun 12th, 2005, 3:27am » |
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on Jun 5th, 2005, 11:27pm, Franko wrote:| If I do decide to try alternative methods and I inform my doc she wouldn't report it would she? Frank |
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Don't come right out and tell your doc.
Put it in the form of a question. "I have read about a mushroom (or LSA or oxygen or whatever) treatment for cluster headaches. What do you think of going that route?" That will make the doc think it is her idea and docs love that.
Good luck to you. Hope you find relief soon.
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Stay stressed. Never relax. Never sleep. Ever.
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E-Double
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Re: need info
« Reply #18 on: Jun 12th, 2005, 3:54am » |
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on Jun 12th, 2005, 3:27am, BobG wrote:
Don't come right out and tell your doc.
Put it in the form of a question. "I have read about a mushroom (or LSA or oxygen or whatever) treatment for cluster headaches. What do you think of going that route?" That will make the doc think it is her idea and docs love that.
Good luck to you. Hope you find relief soon.
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My old neuro dismissed me when i put it that way then had the nerve to tell me out of options.........Now i go to NECH where they are all about do wahtcha have to do.
Awesome!!!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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stomper
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Re: need info
« Reply #19 on: Jun 12th, 2005, 2:57pm » |
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hey now sorry to but in. but i need some info too? my neuro is giving me bad vibes , my gp is like your crazy! what is nech?? i am trying to but its all up hill! ps franko i to was diagnosed at 31, now 41 still fightin the beast. but i did not know of this ch site, and now i too am like wow. best of luck to you.may the pain go away sooner than i. thanks to the great folks at ch.com jimm
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Chillrmn1
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And don't forget to checkout clusterbusters.com. Many, many folks have found relief and painfree time with this option of treatment. This will add to you education. A must read.
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Franko
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Re: need info
« Reply #21 on: Jun 12th, 2005, 8:27pm » |
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hello everyone,
and thanks again for all the info. I will try the melatonin and speak to my doc about the verapimil. I have decided against the shroom treatment for now but I have ordered those seeds. I believe I am episodic because the beast has been tortouring me less and less often. I only hope it lasts a long long time. When the beast does visit the only thing that seems to help is splashing cold water repeatedly on my face and the great shoulder rubbing from my wife.
I will also try the oxygen while at work, my co-workers will think I,m nuts.
I can,t say it enough.... thank you to everyone for the support it has made a difference.
Thanks Frank
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don
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Well you wouldn't clinically know if you are chronic until 12 months have passed Chronic is defined as having less tha 30 days pain free in a 12 month period.
Heres what I do when I go into cycle.
480 mg of verapamil per day.
Wait 2 weeks and begin a prednisone taper.
Imitrex injections to abort.
9mg melatonin at night.
02 doesn't work for me but I highly reccomend you try it. There is a link on the left that has all you need to know about 02.
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