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FRUSTRATED123

please help me

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hello all.  i am a cluster sufferer and have been since 1999. i was episodic and have become chronic over the last two years. i have had episodes that have lasted up to 7 hours.   i have taken all the pills, had needles in my head (occipital nerve blocks) taken prednisone in such high doses that i thought i was going crazy. i need some information on the use of the lsa seeds. i have found the page that shows the study that was compiled, titled "Response of Cluster Headache to Self-Administration of Seeds Containing LSA", but I cannot really find anything that explains in detail how i go about starting this treatment.  i know that i have to detox first, but not sure of the things i need to detox from. i currently take topamax and methergine for the clusters, but do take other meds for other problems. Can someone please guide me in the right direction?

I also do use oxygen and this does help if i catch it in time, but even if i catch it, i am still left with that horrible, lethargic feeling all day long.  I really need something that will hopefully stop these things., i am feeling desperate. I want my life back. Thanks!!!   Frustrated!!!!

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Oh, no!  Sorry to hear.  I'm new hear too (ECH) and the people here are WONDERFUL.  So supportive, knowledgable and have great advice.  Drank my first "rc uncola" last Thursday and today has been a good day. 

I'd give you some advice, but I'm far from an expert on it.  Read the threads and post as many questions as you need.  They will be answered.

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Okay . . . I thought I had reposted this reply here, from where Frustrated had originally posted, in the ClusterBuster files . . . but now I don't see it.  I'm just posting it to possibly avoid redundancy.

So sorry for what you're going through, Frustrated.

I would strongly suggest that you move this post (re-post it) to the General Board, where more people are likely see it.

Here in the ClusterBuster files section there are excellent introductions to the use of LSA seeds: for example, in the file titled "LSA" (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974) and in the one titled "Dosing Methods."  I'd say that of the seeds, most people find RC (rivea corymbosa) the easiest to work with.

Once you've posted at the General Board, you will get lots of question/suggestions to make sure you are using your oxygen as effectively as possible, and once you've read the LSA information, you can start asking more specific questions.

People are here for you.  It's going to get better.

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(Copied from the archive files):

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 strengthen or change the actions of another, or the two together will cause something else entirely to happen. Sometimes one drug will block the actions of another.

The bad news for cluster heads: many medications commonly used to treat clusters will block the effectiveness of tryptamines.  In fact, when the clusterbuster treatment doesn’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, 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 the clusterbusters.

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

(LINK)

.

Warning! Check with your doc!

Do not, by any means change or drop a prescribed medication, whatever it is prescribed for, without consulting your doctor first.

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 it is being used. It is also very effective at causing some nasty side effects, and most doctors will prescribe it for clusters only for short periods in decreasing dosages.

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

Verapamil

Verapamil is a blood-pressure drug often prescribed for the long-term, preventive treatment of clusters. Most reports seem to indicate verapamil will block the clusterbuster treatment, though a few say they successfully used tryptamines while on verapamil, and some reports seem to indicate that it impeded, but didn’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.

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, and this means they fill the same neuroreceptors as tryptamines (LINK), 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.

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 a lot of them in use; an incomplete list:

Opium

Morphine

Heroin

Codeine

Demerol (pethidine)

Percoset (oxycodone)

Oxycodone

Oxycontin (oxycodone)

Hydrocodone

Fentanyl

Buprenorphine

Methadone

Tramadol

Ultracet

Vicodin (hydrocodone)

Dilaudid (hydromorphone)

Actiq (fentanyl)

Duragesic (fentanyl)

Suboxone (buprenorphine)

Ultram (tramadol)

Ultracet (tramadol)

SSRIs

Selective Serotonin Reuptake Inhibitors

Prozac, Celexa, Lexapro, Paxil, Zoloft

Not-so-selective:

Effexor, Pristiq, Cymbalta

Tricyclics

Elevil. Tofranil

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

Warning! Check with your doc! Do not drop a prescribed medication or change its dosage without consulting your doctor first.

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Thanks to everyone for their help. I will gather the information and talk with my doctor.

I have been having 2-3 a day so i am anxious to get some help.

i will be back with more questions, i am sure.

thanks again to everyone. this site has been a GOD send to me.

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Frustrated,

I'm here to tell you, you've come to the right place.  I've had CH for over 20 years now and only found this website a year ago.  Guess what...  After following the detox and using the seeds option I've been attack free for a year now!  I maintenance dose every 1 to 3 months and am happy to say my life has NEVER been as good as it is now.  It's a real eye opener to wake up one day and say to yourself: "wow, this is how normal people feel.. wow...."

Please read, read, read everything you can on the option you choose.  For myself this website has proved to be more help than 20 years of doctors supposed 'expert' diagnosis and treatment.  You'll also find others here that share your condition are more than happy to help!

Jeff

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Sorry things are so rough for you right now, Frustrated.  Were you able to find the info you were looking for regarding detox and seeds?

Detox is difficult, but it's a crucial step if you want to give these treatments a fair chance to work for you. 

Hang in there and let us know if you have any questions. 

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