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Bonnie Lee
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Have been officially diagnosed after 2 years of "It could be this, It could be that" with Cluster headaches and occipital neuralgia. am doing everything the docs have told me. had an appointment with john hopkins this past wensday and just started on topamax along with a long list of other meds i am already on. I am really getting to my wits end with these headaches and am at this point ready to try anything.

I have been reading on here about the RC seeds and schrooms. But have second thoughts about trying them because i am a nurse and my husband is in the military and am very nervous about doing anything illegal. My cousin tells me the spores are not illegal but the mushrooms are. and i really dont know much about the rc seeds.

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Bonnie,

Welcome. Glad you got here. Sorry you had to.

As a nurse, I suspect you have O2 available. It won't get rid of the beast, but it will abort an attack. Read the O2 thread. It tells the whole story.

Some of those 'lovely' meds really suck. They help, but they suck.

Someone will help you soon with the other treatments.

Look at the other New Here thread by mrsgnreyedidy. It contains links to some important threads to get you started.

All the best,

spiny

edited to add

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RC (rivea corymbosa) seeds, which are just as effective as mushrooms for most people, are legal to buy and possess.  What is not legal is to consume them.  This means that in order to be apprehended you would practically have to invite a law officer to watch you drink them and then get rushed someplace for a very, very thorough blood test to detect the trace amounts of LSA in your system.  RC seeds at the levels needed to treat CH never, or very nearly never, have any psychedelic effects.  They work.  They're cheap.  The preparation is simple (grind 'em up and soak 'em in water for about an hour). 

To use any psychedelic for busting, you have to be "detoxed" from your CH meds for 5 days. 

The Hopkins docs did prescribe oxygen, didn't they?  If not -- or maybe even if they did -- see http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

An inexpensive and easy anti-inflammatory "vitamin D3" regimen works for a lot of people, and you can start it right away.

I like spiny's suggestion of looking at the info in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357

You'll find links there to learn more specifics about seeds, D3, and other stuff.

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thebb, i gotta say that this faq seems to me to contain some questionable information.  i don't claim to be as expert as many people here, but i know for sure that the recommendation, >>>4 to 8 Rivea seeds should be the range people treating cluster headaches should remain at least for the first dose<<<, is way out of whack with what people have been told -- and what people have done -- ever since i got here 16 months ago.  the smallest first dose i've seen anyone take over the past 16 months was 10; the most commonly recommended is about 30, and i'd guess the average is closer to 35.  not one of those people has reported any psychedelic effects.  tommyd, who acknowledges that he is very cautious about what he says, recommends in his "LSA" file that "cautious clusterheads" might want to start with 8-10 seeds.  am i wrong in thinking that 4-8 is likely to be a waste of time, followed by 5 days of waiting for no good reason? 

a lot of the content of this faq relating to effects also seems kind of over the top to me, given the very mild effect that people actually experience from RC.  i understand the need for caution and warning, but this seems to me that it can scare people away without any real basis in actual experience.  similarly, i know the taste is bad, or even awful for some people . . . but chocolate syrup washed down with orange juice???

i notice that somewhere in here it says that RC "looks promising," and i also notice that a lot of it was prepared by "TD."  is it possible that this is at least in part an early treatment of the subject by tommyd, one that could be supplanted as a reference, based on subsequent experience, by this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

and, just for my information, i don't know what this means: >>>Many have found that drinking a BUNCH of Orange Juice the day after really helped the hangover feeling go away.<<<  i just don't recall anyone here talking about a "hangover feeling" the next day -- i'd say most folks report feeling refreshed after, finally, a decent night's sleep.  is a "hangover feeling" something that's actually common?

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i notice that somewhere in here it says that RC "looks promising," and i also notice that a lot of it was prepared by "TD." [highlight] is it possible that this is at least in part an early treatment of the subject by tommyd, one that could be supplanted as a reference, based on subsequent experience, by this file:[/highlight] http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

You hit the nail on the head.  That is an old FAQ that I didn't realize was still out there. 

Back in the old days (meaning a few years ago ;) ) on the old private board, there was a lot of experimenting and a lot of comparing notes.  Tommy was the one who pored over all of the posts, and assimilated it into a coherent form that could be referred to.  And yes, we were a bit over cautious, because we did not have near the data that we do today. 

Tommy, I think I have most of this right, but please correct me if I'm wrong.

bobb

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You know, I'm thankful to Tommy every time I come to this board -- but until today I have to admit that it never occurred to me how much experimenting, trial and error, and commitment to collaboratively figuring things out went into all this.  Courage, too, and generosity to all of us (and our loved ones) who have enjoyed the benefits.  So now I'll be thankful to you Bobb, and everyone else who laid the foundations for this.  Can you give the names of any of the others who participated in those "early days" (if not, I understand)?

One question; sorry that it's kind of convoluted.  In that old FAQ, there was a lot of discussion about soaking methods that seemed to affect the strength of a dose of seeds, and I gathered that it was saying there that if the same amount of seeds were soaked in water and in wine for the hour to two hours, the amount of LSA produced would be about the same, but soaking for longer times would produce more LSA, and that a longer soak in wine was particularly effective at producing more LSA. (Not sure I got that right, but it isn't essential to my question anyway(!))  It's been my impression from something I read that wine and water as soaking agents both produce about equal amounts of LSA from the same quantity of seeds in the hour/two hour soak, and that longer soaks produce no, or practically no, increase in the amount of LSA (basically, that most of the LSA is hydrolized by water in the hour/two hour soak, and that no other agent, such as wine, or no longer time period, is actually going to produce significantly more LSA).  Am I right in that understanding?  Or wrong?  I had thought that a lab actually had been hired to test all that, and that was the outcome: that a one/two hour soak in water produces just about as much LSA as you're going to get, no matter what else you do.

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Good Morning Bonnie Lee!

Hope you had a restful night.  The RedBull method seems to work for a lot of people, luckily, I have oxygen that works 90% of the time, so I have not had to drink the RB's, I don't care for the taste  :)

The RC seeds seem to be the best treatment approach for you and your situation.  Order some pronto!!! Detox from all other meds that don't play nice with seed treatment.  I copied and pasted it below:

Good luck, we ALL know how you feel.  Is the O2 being administored at 15/lpm?  Hopefully, you have an even higher flow rate.  That seems to make a huge difference.

Here are the meds that will interfer:

6. - PLAYING WELL TOGETHER

Nov 18th, 2010 at 8:38pm     PLAYING WELL TOGETHER

Every doctor, every pharmacist, will warn about drug interactions...some chemicals simply do not play well with others in the body. Sometimes, one drug will block the actions of another. Sometimes, one drug will strengthen or change the actions of another, or the two together will cause something else entirely to happen.

The bad news for clusterheads: many medications commonly used to treat clusters will block the effectiveness of tryptamines. In fact, when the clusterbuster treatment doesnÂ’t work, most of the time it is because these drugs are interfering.

There are other drugs and substances that make the tryptamines work too well...that is, they enhance the psychedelic side effects of tryptamines, and make for some unwanted surprises.

Based on the reports of clusterheads and expectations based on research and theory, Clusterbusters made a list of drugs likely to interfere with the treatment. There are other drugs we are not sure will interact with tryptamines, and drugs that might enhance the psychoactive effect of tryptamines. And of course there are drugs and treatment that do play well with cluster-busting tryptamines.

Experience has shown the clusterbuster treatment works best when drugs that interfere are avoided for long enough to be cleared from the body. We call this period “detox,” short for “detoxification,” though technically, this is not the proper term. Many clusterheads use some of these drugs for other conditions, and should talk with their doctors before stopping or changing any medications; some cluster medications must be withdrawn from slowly with a prescribed schedule so, again, see your doctor first.

Dropping cluster meds can be difficult while the attacks keep coming, but there are ways to help you survive during detox. See COPING - BUSTER-FRIENDLY TREATMENTS: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290131288

and OXYGEN INBFORMATION:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1319283840

SURE BLOCKERS

Triptans

Perhaps the most common culprits for ClusterBuster failure are the triptans, since they unfortunately are the most popular abortive treatments for cluster attacks. Sumatriptan (Imitrex) can stop an attack quickly, and itÂ’s possible it foils the clusterbuster treatment more often than any other blocker. Other triptans are used less often, and there are fewer experiences, but for the sake of caution, these should also be avoided.

Sumatriptan (Imitrex®)

Zolmatriptan (Zomig®)

Rizatriptan (Maxalt®)

Naratriptan (Amerge®)

Frovatriptan (Frova®)

Almotriptan (Axert®)

Eletriptan (Relpax®)

Steroids

Steroids, the corticosteroids Prednisone and Prednisolone particularly, can be very effective at completely stopping cluster attacks while they are being used. They are also very effective at causing some nasty side effects, and most doctors prescribe them only for short periods in decreasing dosages.

There are many reports that prednisone will block the clusterbuster treatment.

Verapamil and other calcium channel blockers

Verapamil is a blood-pressure drug often prescribed for the long-term, preventive treatment of clusters. Most reports seem to indicate verapamil and other calcium channel blockers will interfere with the clusterbuster treatment, though a few say they successfully used tryptamines while on verapamil, and some reports seem to indicate that it impeded but didnÂ’t completely block the treatment. Verapamil is known by the brand names Isoptin, Verelan, Verelan PM, Calan, Bosoptin and Covera-HS.

Anti-convulsants

Topamax (topiramate) is another of those drugs developed for some other disease that clusterheads have found useful. Many find its side effects objectionable. There are indications it will block the effectiveness of tryptamines, as will other anti-seizure medications such as Depakote and Tegretol.

Opiates

Opiates usually have little to no effect on clusters for most, but a few say the stuff works for them, and it is too-often prescribed by doctors in desperation or under the faulty assumption that such powerful pain killers must automatically work for painful “headaches.” There are many tales of emergency room doctors who are surprised and aghast when a shot of morphine has no effect on a cluster attack.

Other drawbacks - the infamous addiction potential, while sometimes overstated, is real. It results in such medications becoming a target for theft. In any case the opiate and opioid pain killers seem to interfere with the cluster treatment. There are many in use; here is an incomplete list:

•Opium

•Morphine

•Heroin

•Codeine

•Demerol (pethidine)

•Percoset (oxycodone)

•Oxycodone

•Oxycontin (oxycodone)

•Hydrocodone

•Fentanyl

•Buprenorphine

•Methadone

•Tramadol

•Vicodin (hydrocodone)

•Dilaudid (hydromorphone)

•Actiq (fentanyl)

•Duragesic (fentanyl)

•Suboxone (buprenorphine)

•Ultram (tramadol)

•Ultracet (tramadol)

Ergotamines

Including but not limited to:

     •Dihydroergotamine (DHE) (nasal sprays [migranal] and injections)

     •Sansert

     •Cafergot

     •Ergomar

The molecules of these substances are very similar in shape to the tryptamines. This means they fill the same neuroreceptors as tryptamines, and interfere with the clusterbuster method. They can have some very serious side effects as well. They are powerful vasoconstrictors, and can cause bad circulation problems, particularly in the fingers and toes.

SSRIs

SSRIs, or selective serotonin re-uptake inhibitors, widely used to treat mood and other psychological disorders may be blockers, as they are involved with serotonin. The SSRIs include Prozac, Celexa, Lexapro, Paxil and Zoloft.

Other similar serotonin-affecting drugs include Effexor, Pristiq and Cymbalta. Drugs known as tricyclics, including Elevil and Tofranil. may also interfere with tryptamine treatment.

ENHANCERS

Lithium

People taking lithium, whether it is for preventing cluster headaches or for some other reason (it is often prescribed for people with bipolar affective disorder - see below for more on bipolar disorder). Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects.

The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.

MAOIs

Monoamine oxidase inhibitors (MAOIs) such as Nardil or Parnate are prescribed for depression and sometimes other conditions. They can block the action of enzymes that can break down some tryptamines, and as such may act to intensify the action of a given dose of tryptamine, especially when first taking tryptamines. However, after continued use (as perhaps after a month or more), MAOIs will tend to reduce the psychedelic effects of mushrooms and LSD. It is not known if long term use of MAOIs will interfere with tryptamine treatment of cluster headache, but it is possible.

NON-BLOCKERS

There are substances which will probably not interfere with the actions of psilocybin:

     •      antibiotics

     •      NSAIDs (non-steroidal anti-inflammatory drugs) such as Tylenol                 (acetaminophen), aspirin,      ibuprofen, Vioxx (rofecoxib), etc.

     •      antacids and anti-ulcer medications

     •      asthma medications

     •      insulin

     •      caffeine

     •      caffeine/taurine energy drinks

     •      Tylenol

     •      aspirin

     •      B-Complex and multi vitamins

     •      Diovan (blood pressure)

     •      protonix (for acid reflux)

     •      Indomethacin

     •      meclizine and dimenhydramine (The antinausea agents)      

     •      Lipitor

Hope all this helps you take the next step to pain free times!

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