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rascleo

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Needing Your Thoughts
Apr 10^th, 2011 at 4:35am

So my husband has told me that my Chronic Cluster Headaches are due in part to my circadian rhythm. Since my sleep is induced my sleeping medication, so my sleep isn't true normal sleep. However, even with meds, the Cluster Headaches break through and wake me up 3 to 4 times per night, so I sleep during the day, I feel very sleep deprived. Stephen,my husband, also thinks it will help me to wake up at sunrise and eat dinner, the go to bed about an hour or so afterwards. He says this change will make my Headaches less frequent, since I will be 'resetting my brain' and sleep cycle. What do you think about this idea? I'd love to hear your reactions to this, if you'd like to give me an opinion and or advice.
Something needs to change! It's been 2+ years of unrelenting Chronic Cluster Headaches. My Neurologist has tried many, many medications and 3 procedures and nothing has helped. These F_____g Headaches are running/ruining my life and ruining my relationship, as well as my loosing my career, can't take much more of this damn way of life, I don't think my partner can either.
Advice? ANYONE! PLEASE!
Thank you for taking the time to read this post and perhaps respond......Richard

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Richard in San Diego

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: Needing Your Thoughts Reply #1 - Apr 10^th, 2011 at 7:18am Working nights is waking at sunset and going to sleep at sunrise about now, but what works for me is taking a preventive med, without which I will get hits, and using oxygen for breakthroughs. Sleep meds aren't preventatives for clusters, although some find help with melatonin.
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Brew

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Re: Needing Your Thoughts
Reply #2 - Apr 10^th, 2011 at 8:24am

When everything else has failed you, as it seems it has, go here and read:

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I was 10+ years episodic followed by 5+ years chronic. When I employed this method of prevention, I became pain free and have been so for a year now. I have my life back. I hope you can get yours back too.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: Needing Your Thoughts Reply #3 - Apr 18^th, 2011 at 3:00pm ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ What Brew said + Oxygen. It worked for me when nothing else did. I no longer live in fear of the beast and have my life back.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Needing Your Thoughts Reply #4 - Apr 18^th, 2011 at 4:17pm I'm having good results with this as well. It's worth looking into. Believe me.... Jeannie
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MrHorse

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Re: Needing Your Thoughts
Reply #5 - Apr 26^th, 2011 at 2:18pm

When pushing mushrooms on people, it's useful to mention that they're probably illegal where you are, and can lead to persistant side effects in some ways as bad as CH. Use with care and research both the up-sides and down-sides thoroughly - they're a magic bullet for some people but don't work at all for others and /can/ have serious, severe and lifelong side effects.

Saying that rascleo, I should really be responding to your post Wink

Between the lines it sounds like your husband is telling you your cluster headaches are partly your fault. Melatonin may help a little and could be worth taking to establish a better circadian rhythm, but hasn't helped me at all for CH pain levels or insomnia (I'm on 10mg/day). If Stephen is so desperate for you to follow his advice in order to preserve marital harmony, I'd just try it for as long as it takes (3-4 weeks?) to see if it is/isn't working. It sounds to me like an extremely long shot with no scientific basis, especially as if you wake 3-4 times per night then the clusters are re-setting your rhythms each time they wake you up (or de-setting). Good sleep health can improve cluster cycles though, but it might be a better approach to go see your doc, get a sleep study done, see a sleep psychologist etc.

In 2 years, there are still a heap of drugs left to try - I've had varying degrees of success (never fantastic!) over the last 5 years, but still have heaps of drugs left to try. Don't give up - something may work for you. And if your husband gives up on you, I'm sorry. I hope he's more man than that

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Potter

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Re: Needing Your Thoughts
Reply #6 - Apr 26^th, 2011 at 3:44pm

MrHorse wrote on Apr 26^th, 2011 at 2:18pm:

When pushing mushrooms on people, it's useful to mention that they're probably illegal where you are, and can lead to persistant side effects in some ways as bad as CH. Use with care and research both the up-sides and down-sides thoroughly - they're a magic bullet for some people but don't work at all for others and /can/ have serious, severe and lifelong side effects.

Saying that rascleo, I should really be responding to your post Wink

Between the lines it sounds like your husband is telling you your cluster headaches are partly your fault. Melatonin may help a little and could be worth taking to establish a better circadian rhythm, but hasn't helped me at all for CH pain levels or insomnia (I'm on 10mg/day). If Stephen is so desperate for you to follow his advice in order to preserve marital harmony, I'd just try it for as long as it takes (3-4 weeks?) to see if it is/isn't working. It sounds to me like an extremely long shot with no scientific basis, especially as if you wake 3-4 times per night then the clusters are re-setting your rhythms each time they wake you up (or de-setting). Good sleep health can improve cluster cycles though, but it might be a better approach to go see your doc, get a sleep study done, see a sleep psychologist etc.

In 2 years, there are still a heap of drugs left to try - I've had varying degrees of success (never fantastic!) over the last 5 years, but still have heaps of drugs left to try. Don't give up - something may work for you. And if your husband gives up on you, I'm sorry. I hope he's more man than that

Could you tell us more about these lifelong effects.

potter

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bonkers CH.com Old Timer Offline What is THIS? Posts: 308 San Diego, California Gender:	Re: Needing Your Thoughts Reply #7 - Apr 27^th, 2011 at 4:39am And maybe something about your own research into CH therapies.
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deltadarlin

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Re: Needing Your Thoughts
Reply #8 - Apr 27^th, 2011 at 10:44am

MrHorse wrote on Apr 26^th, 2011 at 2:18pm:

it might be a better approach to go see your doc, get a sleep study done, see a sleep psychologist etc.

Sleep psychologist? I didn't know they existed. On the other hand, many ch'ers do haave sleep studies done, sleep with a CPAP machine, and still have cluster headaches. The CPAP tends to affect the quality of sleep, not the amount of headaches (at least from what I have seen).

Like others, I'd like to know the permanent side effects of using alternatives.

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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: Needing Your Thoughts Reply #9 - Apr 27^th, 2011 at 10:52am Quote: When pushing mushrooms on people Where on this thread is anyone pushing mushrooms on people. I do not even see the word mushrooms mentioned. For the record, I have never taken mushrooms or pushed them on anyone.
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wishbone

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Re: Needing Your Thoughts
Reply #10 - Apr 27^th, 2011 at 11:32am

MrHorse maybe you should get off your high horse and read the thread more carefully. I think the big reason for this board is to offer suggestions and means of help to all of us CH sufferers. Like midwestbeth said mushrooms was not even mentioned but merely a site (which if you look to left at the bottom is the site). Agreed there may be some legal issues involved with mushrooms, but hey does anyone speed when driving, did anyone that works in an office ever take a company pen home. Yes those examples are the same, but my point is everyone does something illegal from time to time but what is or was the purpose? I suggest partaking in mushrooms has a far greater purpose and justification than speeding or taking a pen. This decision is up to the individual, but candidly I would think it worse of us not to suggest to sufferers to investigate this alternative treatment and let the individual decide if they want to speed.

As far as life long side affects, there could be some with some of the forms of alternative treatment but I think this would depend on dosage (I don't know never tried), but as far as life long side affects there are those with obesity, smoking etc.

For the record I have only tried the mushrooms once and it stopped cycle in two days and was pain free for 3 months. Only reason I have not tried again is I cannot get them and was too stupid or something to grow them in two failed attempts.

Wishbone.

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Just as I try daily to grow my Faith in God I try daily to learn how to cope with Cluster Headaches

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flipperlips

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Re: Needing Your Thoughts
Reply #11 - Apr 27^th, 2011 at 11:41am

My husband has been dosing with shrooms for around two years now. It hasn't changed him or harmed him in anyway. I don't think that the small amount most people use to bust are going to kill them.

No one here pushes mushrooms on anyone. They simply give the link to the Clusterbusters board for people to decide for themselves. Yes they are illegal, but they have given so many people remission. I for one will say that busting saved my husbands life.

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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: Needing Your Thoughts Reply #12 - Apr 28^th, 2011 at 6:58pm To my knowledge, there are no current religions in the US that use psilocybin as part of their ceremonies. The only drug that I am aware of that is still used as part of a religious ceremoney is peyote and it is used by some tribes of American Indians, particularly the Kiowa and Comanche.
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: Needing Your Thoughts Reply #13 - Apr 28^th, 2011 at 7:26pm Actually, you couldn't.
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Needing Your Thoughts Reply #14 - May 1^st, 2011 at 5:25am Joshl924 wrote on Apr 30^th, 2011 at 9:51pm: umm... I got an A in religion and the ~~constituion.~~ constitution... you certainly can. do you have a law degree? There I fixed it for you. Potter
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: Needing Your Thoughts Reply #15 - May 1^st, 2011 at 10:29am Joshl924 wrote on Apr 30^th, 2011 at 9:51pm: umm... I got an A in religion and the constituion.... you certainly can. do you have a law degree? Tell you what. Try and start a new religion and claim that said religion uses drugs as part of it's spirituality and then let me know what the DEA says.
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Potter

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Re: Needing Your Thoughts
Reply #16 - May 4^th, 2011 at 10:20am

Joshl924 wrote on May 1^st, 2011 at 12:54pm:

ever heard of the marijuana churches in cali

the legal standard is that it be a sincerely held belief.

but I have no desire to try nor waste my time... I just dont like being told Im wrong when Im not, Ive busted my but in law school not to be told by someone who hasnt who simply is not in the know. What do you do for a living? How would you like it if say you were a real estate broker and I told you... no you're wrong about market prices in your area.

its isnt worth the time effort and money and the way it works is that you have to start it, get in trouble then fight it in court having gotten in trouble in the firrst place.

sound like I know what I am talking about....?

the seminal case was two guys out in oregon joined a peyote native american church and lost govt benefits after a drug test (state govt) so they sued... funny part was that they were two white guys without a spec of native american blood.

chief jim billy of the seminole trube in FL killed a florida panther and was arrested as it is an endangered species, he claimed it was part of his religion.. thing is that he was spot light hunting.... his ancestors didnt quite have spot lights... he still won.

ahem..

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Linda_Howell

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Re: Needing Your Thoughts
Reply #17 - May 4^th, 2011 at 7:41pm

Until 2 yrs. ago I've lived in Southern (Los Angels) and Northern (Redding) Calif. ALL my life.

Do you mean these churches? Because I've seen their "churches" 1st-hand and most are in unsavory neighborhoods, leave a lot to be desired as anything spiritual in the least bit, and personally i'd be afraid to park my car (much less get out) anywhere in the vincinity. Which in MY own opinion...deliniates them from real churches.

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; (Purple-Erkle?????)

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I found many more "Churches" but thought most here, would run out of patience looking at them.

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Hurt people.....hurt people. Think about it.

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