I am a returning supporter and I have some medical questions.  My boyfriend has been hit hard this time.  It's going on 3 months for this cluster, sometimes 4 a night, sometimes an hour each and he is exhausted.  He does not take any meds because of past experiences.  But energy drinks, green tea and hot showers are no longer comforting (not that they did much to begin with).  I was researching herbal remedies and came across a nasal spray made with capsaicin(sinus buster) created by a man named Wayne Perry who claims to have clusters (I hate to say "claims").  Can anyone verify this remedy?  I'm desperate to find him something.  I don't care about the money, I just don't want something unknown to harm him.  Also, can anyone explain these RC seeds to me and how this idea came about?We would be very grateful for any input.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is a great source on everything on RC seeds and what not. My boyfriend and I have lived by this site for a while now. It's been a godsend to us.

There are tons of alternative treatments all over this site, but I will leave those to people more knowledgeable on them. O2 is one of the best natural type remedies for most.

Minxy

First of all, 02, 02, 02. Even if he has to see a doctor to get a script for it, that will give him the most relief.

15-25LPM, non-rebreather mask, are both musts. It needs to be 100% oxygen.

So, I tried sinus buster, myself.

I don't know if it helped, the first time I used it, I thought it triggered an attack. It didn't hurt me though. If he has a lot of pain in his sinuses, there's a chance that it could help him by depleting substance P from the nerves. Honestly, my opinion? Try it and see if it helps him. Anything is worth a shot.

Also, check out the thread titled Kilowatt3, I don't know if that's the herbal remedy he's tried, if not, it's also worth a shot.

But seriously, the 02 is the best thing that you could do for him at this point. It works for at LEAST 78% of people, when used properly.

Sinus buster is pure bull shit, fucking punk is making money off our pain. Ive been here ten years and never once has anyone posted that sinus buster helped them.......except the damn sinus buster spammers. >:(

What Jonny said. 02,02,02
Clusterbusters.com
the bb

wrote on Dec 31^st, 2008 at 8:51pm:

Sinus buster is pure bull shit, fucking punk is making money off our pain. Ive been here ten years and never once has anyone posted that sinus buster helped them.......except the damn sinus buster spammers. >:(

ummm...what he said. sinusbuster didn't do a damn thing for me ether. we've had a few sinusbuster trolls here too but they don't hang around long 8-)

clusterbusting has worked wonders for me. if you decide to go that route, be sure to research the clusterbusters website  first.

o2 at 15 lpm or higher will help with the aborts. if you have any questions on any of this just post it and we'll help you out. ;)

be patient. try not to over do anything in desperation. i know it's tough but try keep cool. you'll get through this.

most importantly. thanks for being a supporter. it's tough to see somebody you love in that much pain.

Poor Jonny can never say what he means....but what he said! ;)

Another strong vote for 02 here. 30 years of the dance and it's still my first line and most effective abortive. I hear you on the frustration level, the damned things hurt and the feelings of helplessness can get a little over whelming. Bless you for supporting him thru all this.

joe

Wayne Perry and his SinusBuster product are legend here. The amazing thing is the that the guy had the balls to actually say that he was creating a watchdog "organization" that is out there trying to protect helpless cluster sufferers from those who would hope to sell snake oil to them.

Talk about the wolf protecting the henhouse.

Save yourself some money -- stay away from sinusbuster. Or, if you're going to buy some to "try it" go ahead and buy some "HEAD-ON" at the same time and piss away enough so that youdon't forget the experience.

Scott

Can you tell us some more about these "past experiences"?  What has he tried?  I can guarantee that everyone on here has had a bad experience at some point with medications; you have a lot of options, and some work and some don't- you just have to keep trying until you find what works for you.

As far as a quickie on the RC seeds, they contain LSA, which is one of the indole-ring hallucinogens that work on the specific serotonin receptors that abort and prevent clusters...but unlike mushrooms and LSD, it's legal to purchase the seeds; but you need to get them from a grower that doesn't use pesticides/chemicals to make them "inedible".  You need to go read everything you can on clusterbusters.  Good luck!!   ;)

Heather, can you give us some info on what meds he has tried in the past, and what the experience was with them? Sinus buster is not well received here, it's a waste of money to us.

Has he tried Oxygen? If not, then have his doc get him a script for a minimum of 15 liters per minute by non-re-breather mask. He must get on the O2 at the very first sign, as soon as he knows he's getting hit.

Also, try melatonin to sleep at night. It comes in 3 mg capsules, and most take between 3 up to 12 mg per night. It will allow him to sleep and get some badly needed rest.

There are other things to try, but please give us a bit more background. We are here to help! Let us know.

And hang in there. It's hard to watch this, I know.  [smiley=hug.gif]

From the OUCH Treatments page:

Quote:

Capsaicin Pain. 1994 Dec;59(3):321-5. Preventative effect of repeated nasal applications of capsaicin in cluster headache. Fusco BM, Marabini S, Maggi CA, Fiore G, Geppetti P. Institute of Internal Medicine VI, University La Sapienza Rome, Italy. Preliminary studies have shown that repeated nasal applications of capsaicin prevented the occurrence of cluster headache attacks. The present study was designed to verify the difference in efficacy of treatment with nasal capsaicin, depending on the side of application. Fifty-two patients affected by episodic form were divided into 2 groups, one receiving the treatment on the same side where the attacks occurred (ipsilateral side), the other on the controlateral side. Eighteen patients with a chronic form alternately received both ipsilateral and controlateral treatments. Seventy percent of the episodic patients, treated on the ipsilateral side, showed a marked amelioration whereas no improvement was noted in the patients treated on the contralateral side. The efficacy of ipsilateral treatment was emphasized by the results obtained in chronic patients. However, in these patients, the maximum period of amelioration lasted no more than 40 days. The difference between the effects of the 2 treatments (contralateral and ipsilateral) was statistically significant in both episodic and chronic sufferers. The efficacy of repeated nasal applications of capsaicin in cluster headache is congruent with previous reports on the therapeutic effect of capsaicin in other pain syndromes (post-herpetic neuralgia, diabetic neuropathy, trigeminal neuralgia) and supports the use of the drug to produce a selective analgesia. PMID: 7708405 ---------- Headache. 1994 Mar;34(3):132-7. "Capsaicin-sensitive" sensory neurons in cluster headache: pathophysiological aspects and therapeutic indication. Fusco BM, Fiore G, Gallo F, Martelletti P, Giacovazzo M. Institute of Internal Medicine VI, University La Sapienza, Rome, Italy. Capsaicin, when repeatedly applied to the nasal mucosa of cluster headache patients, has been shown to prevent the occurrence of pain attacks. In order to investigate the mechanism of the drug's action, we evaluated the effect of repeated nasal application of capsaicin on the contents of sensory fibres immunoreactive to substance P and CGRP in the rat nasal mucosa. Further, considering the possible involvement of the cerebral circulation, we verified the effect of a single application of capsaicin on the blood flow velocity of the internal carotid and middle cerebral arteries (of both sides) and the basilar artery, in a group of healthy humans. The measurements were taken using Doppler devices. In order to verify the reproducibility of therapeutic effect of capsaicin, we carried out a 2-year follow-up study on patients affected by cluster headache (17 by episodic form, 8 by chronic form) who responded positively to the first treatment with capsaicin. During this period they were treated again with capsaicin in case of re-occurrence of symptoms. Capsaicin depletes the fibers immunoreactive to substance P and CGRP in the rat nasal mucosa. In the healthy controls, a single application induced vasodilation in the internal carotid, whereas middle cerebral arteries and basilar artery were narrowed. The results of the follow-up study, demonstrates that in 65% of the patients, the beneficial effect of capsaicin was again present when the treatment was repeated. In the chronic patients the therapeutic effect was always transitory (lasting, at maximum one month).(ABSTRACT TRUNCATED AT 250 WORDS) PMID: 7515383 ---------- Cephalalgia. 1993 Apr;13(2):114-6. A double-blind placebo-controlled trial of intranasal capsaicin for cluster headache. Marks DR, Rapoport A, Padla D, Weeks R, Rosum R, Sheftell F, Arrowsmith F Clinical Immunology Unit, Massachusetts General Hospital, Boston 92114. It has been suggested that treatment of cluster headache (CH) patients with topical capsaicin may desensitize sensory neurons by depleting the nerve terminals of substance P. We attempted to determine whether capsaicin is effective in aborting CH attacks. Patients in acute cluster were randomized to receive either capsaicin or placebo in the ipsilateral nostril for 7 days. Patients recorded the severity of each headache for 15 days. Headaches on days 8-15 of the study were significantly less severe in the capsaicin group vs the placebo group. There was also a significant decrease in headache severity in the capsaicin group on days 8-15 compared to days 1-7, but not in the placebo group. Episodic CH patients appeared to benefit more than chronic CH patients. These results indicate that intranasal capsaicin may provide a new therapeutic option for the treatment of this disease. PMID: 8495452 ---------- Clin J Pain. 1989;5(1):49-53. Beneficial effect of capsaicin application to the nasal mucosa in cluster headache. Sicuteri F, Fusco BM, Marabini S, Campagnolo V, Maggi CA, Geppetti P, Fanciullacci M. Institute of Internal Medicine and Clinical Pharmacology, University of Florence, Italy. Capsaicin application to human nasal mucosa was found to induce painful sensation, sneezing, and nasal secretion. All of these factors exhibit desensitization upon repeated applications. The acute effects induced by capsaicin (300 micrograms/100 microliters) application to the nasal mucosa were studied in healthy volunteers and cluster headache patients. These effects were not different in both nostrils of cluster headache patients as well as in the single nostril of healthy controls. Likewise, the time course of desensitization to the painful sensation and nasal secretion induced by capsaicin applied for five consecutive days in control subjects was almost superimposable to those observed in the nasal mucosa of cluster headache patients. The number of spontaneously occurring attacks was significantly reduced in the 60 days after the end of capsaicin treatment. Whether the beneficial effect induced by capsaicin application to the nasal mucosa could be ascribed to a specific action on sensory neurons remains unknown. PMID: 2520386

I should add that it probably won't stop his attacks.  It is intended, over time, to deplete the body of "substance P".  Substance P is one of the things that makes painful things hurt, makes us feel pain more intensely.  So it capsaicin won't stop the attacks but may make them hurt less in time.