alleyoop

Wow! R U saying that you're a rare clusterhead that does not smoke?

This is no exaggeration. It is mellow compared to the way it was. Thanks to DJ and you guys! Hey Jimi, any chance you'll be able to make the CB conference in Chicago in Sept? bobb

Amen to that rhizz!

Do you Skype?

I know that Medicare doesn't recognize 02 as a valid treatment for CH. Though it will take time, as anything with the government does, hopefully, this paper will go a long way toward changing that.

I found this from an Edmonton, Canada TV station: "Updated: Tue Nov. 30 2010 12:43:33 CTV.ca News Staff Despite mounting evidence of a link between vitamin D levels and the prevention of chronic disease, the authors of a long-awaited report do not call for a huge increase in people's intake of "the sunshine vitamin." After reviewing nearly 1,000 published studies along with testimony from scientists and others, an expert committee from the trusted Institute of Medicine agreed that vitamin D and calcium play a role in maintaining strong bones. But they also said there was not enough strong evidence yet that vitamin D plays a role in preventing chronic illnesses, such as cancer and diabetes. The IOM's report raises the recommended Dietary Reference Intakes of vitamin D, but says the changes are focused primarily on bone health. "In respect to some of the other diseases that we looked at, we just didn't have enough evidence yet to definitively say what level of vitamin D or how much supplements to take to prevent heart disease or cancer," Dr. Clifford J. Rosen, a member of the IOM panel, explained to CTV's Canada AM Tuesday morning from New York. "We focused on skeletal or bone health because that was the primary outcome in which there were enough studies to conclude what we did." The IOM raised its DRI for vitamin D to: * 600 International Units of vitamin D a day for most people (up from 200 IU) * 800 IUs per day for people 71 and older (up from 600 IU) * breastfed babies need 400 IU daily, a level the panel continues to endorse As for calcium, it recommends: * 700 milligrams per day of calcium for most toddlers ages 1 through 3 * 1,000 mg daily for most children ages 4 through 8 * 1,300 mg per day for adolescents ages 9 through 18 * 1,000 mg per day for most women ages 19 through 50 and for men until age 70 * 1,200 mg per day for women over 50 and for both men and women over 70 The panel concluded, after reviewing national surveys of blood levels of both vitamin D, "the majority of Americans and Canadians are getting enough" from our diet and the sun and do not need to take supplements. "We're getting about 200 to 300 units just in our food sources alone," Rosen noted, adding that most of us are getting the rest through supplements and sunshine. Dr. Reinhold Vieth, a professor in the University of Toronto's Department of Nutritional Sciences says he's disappointed that the IOM panel focused only on bone health. "I think other conditions besides bone health should have counted, but they ignored them," he told CTV News. "The amount of vitamin D that helps bone is not entirely appropriate and not enough for other types of conditions," he said. "That is evolving evidence and to ignore that type of evolving evidence is not quite right." Still, the new vitamin D recommendation of 600 IU a day is a big jump from the 200 IU previously recommended. But the panel cautioned against assuming that if a little vitamin D is good, that more must be better. It noted that research on the vitamin is just beginning and cautioned that other vitamins once touted as health boosters, such as beta-carotene and vitamin E, later turned out to be dangerous at higher levels. The IOM panel noted that most of the research so far on vitamin D has only been able to draw links between intake and health effects; they have not conclusively proven that the vitamin is causing the effects. "While these studies point to possibilities that warrant further investigation, they have yielded conflicting and mixed results and do not offer the evidence needed to confirm that vitamin D has these effects," the IOM said in a news release. The report also warns against taking high doses of vitamin D, noting that there are still too many unknowns about the risks of doing so. "Getting too much calcium from dietary supplements has been associated with kidney stones, while excessive vitamin D can damage the kidneys and heart," they wrote. Because there is some evidence of the risk of death or chronic disease from long-term high vitamin D and calcium intake, the panel also issued "tolerable upper intake levels" (UL) for each supplement – the maximum it recommends per day, raising the limits in all cases: * 2,500 IUs per day of vitamin D for children ages 1 through 3 * 3,000 IUs daily for children 4 through 8 years old; * 4,000 IUs daily for all others. * 2,500 milligrams per day of calcium from age 1 through 8 * 3,000 milligrams daily from age 9 through 18 * 2,500 milligrams daily from age 19 through 50 * 2,000 milligrams daily for all other age group Dr. Vieth said he's pleased to see the upper limits were raised to 4,000 IU, saying it now allows researchers to study the health effects of higher levels of the vitamin without ethical questions. Health Canada closely follows The Institute of Medicine's recommendations on Dietary Reference Intakes while setting standards for food labelling, updating the Canada Food Guide, setting nutrition standards for school and nursing homes, and other matters." Can you get some more "mother's little helpers" Leslie? Either valium, or maybe Xanax??? I don't know. Sorry I can't be of more help. Don't kill anyone (unless maybe it's Bill?) ;D Hang in there kiddo! Bob

I'm not familiar with the welding 02 suppliers in the DC area, but I can tell you that if you try another one, don't mention that it is for medical purposes. I don't doubt but that there is a law against selling welding 02 for medical use. All you will be doing is renting a (large) M cylinder and paying for refills. You can procure a 12 - 15 lpm regulator online from E-bay. You will also need a non-rebreather mask or mouthpiece, and a humidifier (bubbler). If you haven't already, check out the "ch.om oxygen page" from the "Menu" tab on the upper left corner of this page. Lots of good info there.

Sounds like she may have both CH and migraine with aura, which could explain the vomiting. A good diagnosis, as hard as it is to come by sometimes, is crucial. I know it's four months away(sheesh), but she should get a good one at the headache clinic. I'm not sure which JAMA article you are talking about but, you should print and take the article that Fun Guy just posted by Dr. Todd Rozen and Royce Fishman: http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE That should give you all the ammo needed to get a good script for 02. You don't tell a welding supply that you are getting oxygen for medical purposes.

Not very common, as far as I know. Does your daughter have migraine with aura in her history?

No, not necessarily Bejeeber. BOL is non-hallucinogenic and has shown good efficacy. And I think the same is true with the seeds. I have never had hallucinations while dosing with LSA, and have had pretty good efficacy. Interesting experiment Jordan, and one I think worth trying. Keep us posted. bobb

Thanks so much for this FG! Todd Rozen strikes again! :) This should go a long way towards educating the medical and insurance professions. Way kewl! Bobb

The pleasure was all mine Dan.

From Drugs.com: "Clomiphene citrate is capable of interacting with estrogen-receptor-containing tissues, including the hypothalamus, pituitary, ovary, endometrium, vagina, and cervix. It may compete with estrogen for estrogen-receptor-binding sites and may delay replenishment of intracellular estrogen receptors." "Available data suggest that both the estrogenic and antiestrogenic properties of clomiphene may participate in the initiation of ovulation. The two clomiphene isomers have been found to have mixed estrogenic and antiestrogenic effects, which may vary from one species to another." http://www.drugs.com/pro/clomid.html

Yes, exactly. But it also raises testosterone levels. And no, no man boobs after over two years of taking 50mg daily.

For what it's worth, the ED reportedly goes away when you stop the clomiphene.

Very well could be.

Hi Dan! A few have tried clomiphene, with various degrees of success. Xeno took it for a year or so I think, with fairly good success. Mad6String also tried it very briefly. Both quit with the same complaint - erectile dysfunction. I too, have experienced this side effect, but at my age cannot directly attribute ED to the clomiphene. At any rate, I don't care any more - too much trouble!  I hung mine on a nail, so to speak. ;D The bottom line for me is quality of life. I can deal with a loss of sex drive much better than the hard hits. No contest! But why raising T-levels would cause ED, is beyond me; you would think that it would do the opposite. Most recently, Steve (plateglass) on ch.com has tried the clomiphene with great success. Read about it here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896/286#286 My T-levels have always been in the normal range - both before and after clomiphene. Go figure. : All I know is that it works for me. I don't see any problem with getting a neuro to write you a script. I would just print out Dr. Rozen's article, and take it to him. Yep, still 480mg daily. I need to try another taper...it's been a few years...maybe after the holidays. Yea, Xeno is a cool guy! 8-) We have all sorts of theories about what may have happened. He even did a presentation on the subject four years ago in Austin. He used Buffet's "Changes in Lattitude, Changes in Attitude" as a backdrop for the .pps presentation. 8-) Thanks Dan. My reasons are still self-serving in a way. I have two brothers diagnosed ECH, and am convinced there is a genetic component to CH. It seems to skip generations in my family. So far, neither of my two daughters have shown any signs.  But the last thing I want is to see my future grandchildren have to deal with this disease. Also, I want to correct you. Although the difference between pre-clomiphene and post-clomiphene is like night and day, I am not completely PF. I still get a mild leak-through hit here and there which I attribute mostly to overindulging in the cocktails. Best, Bob

There is supposed to be a tendency to outgrow them at some age.... but, I haven't found that age yet. :-/

I'm older and chronic too Ting, so I suppose that I qualify. I'm 61 years young and have been chronic from day one about ten years ago, although I do remember a brief episode of a few weeks when I was twelve. I know it had to be CH because I remember banging my head on the floor, trying to escape the pain. I was diagnosed primary refractory chronic CH. Other than verapamil, none of the traditional meds helped. When my neuro started talking brain surgery, I became pro-active and discovered Clusterbusters. I had more success with the alternatives than anything that I had tried so far. But I don't feel like I ever gave them a fair chance since I have never been successful detoxing from the verap, after many tries. Interestingly, I got a six month break after spending 4 weeks in MX with Xeno almost 5 years ago -- still don't know what made that work. In April, 2008 my neuro showed me an article written by Dr. Todd Rozen about using clomiphene citrate on a patient with CCH. My doc wrote me a script for clomiphene on the spot. It took me about 4 months to finally make up my mind to give it a go. That was August, 2008 and I haven't looked back. This drug literally gave me my life back! I went from about 3 to 6 high kips a day, to 1 or 2 very low kips a week, with all of them coming in the evenings around 7:00 to 11:00. Before clomiphene, the hits were all over the place, including the dreaded wake-up hits. I tried to attach Dr. Rozen's article to this post, but for some reason it won't let me. You can find it under "Clusterbusters Files." It is the third attachment in the third post in the thread, "stories and articles." It is a .pdf file. Although I haven't busted in over two years, I still think that it's the best treatment out there, and thus continue to support CBs. bobb

The difference between welder's 02 and medical 02 is in the tanks themselves, and not the oxygen. From what I understand, medical 02 tanks go through an additional strength test. Apria is a medical supplier. I don't think you can take your Apria tanks to a welding gas supplier to have them refilled. If your insurance covers oxygen, then I would just stick with Apria and let them swap out your empties for full tanks. I would keep a close check on them though, because as you say, a few of us have had less than pleasant experiences with Apria.

Welcome MuleRider! Sorry you had the need, but glad you found us. bobb

HAPPY TURKEY DAY EVERYONE!!!!! I am thankful to everyone of you for your contributions to this board!

I no longer bust, but it has nothing to do with blue lips or any of the other symptoms. I simply found something else (clomiphene citrate) that gave me my life back. If you want to read more about clomiphene, go to the "Clusterbusters Files" and look under the thread, "stories and articles." It's the third attachment to the third post.

Josh who? ;D

This is from erowid.org: Hawaiian baby wood rose contains 0.04% LAA and Total Alkaloids % by weight is 0.30% Major Alkaloid Content in the seeds of A. nervosa(Burm. f.) Bojer: % of Total alkaloid % dry seed weight Ergine 22.68 0.136 Isoergine 31.36 0.188 Ergometrine (aka ergonovine) 8.20 0.049 Lys. alpha-OH-ethylamide 5.79 0.035 IsoLys. 3.98 0.024 Taken from: Ergoline Alkaloidal Constituents of Hawaiian Baby Wood Rose, _Argyreia nervosa_ (Burm. f.) Bojer. Jew-Ming Chao and Ara H. Der Marderosian. Journal of Pharmaceutical Sciences 62(4):588-91. 1973. Assuming 12seeds is 1.5g (as there is 8seeds in a gram), then when you eat 12seeds, you're ingesting some 0.75mg ergometrine. Ergometrine (aka ergonovine) is a powerful ergot alkaloid causing vasoconstriction of blood vessels (excessive dose would lead to ergotism like symptoms: necrosis/gangrene of the extremities, meaning lips, fingers, ears, balls & thingy) And you have to know that methyl-ergometrine aka methyl-ergonovine (which is an ergonovine derivative) is used by doctors to produce vasoconstriction (in case of uterus haemorrhage for instance) in doses ranging from as little as 0.125 to 0.3mg (0.3mg beeing considered a very potent dose, causing intense vasoconstriction, needless to say such a dose for no reason can be really dangerous) Ergometrine is a bit less potent than methyl-ergometrine, but sub milligram doses (0.3-0.5mg) also have some real vasoconstrictive potential ...which isn't good for HBWR users because... ...just think that you're ingesting 0.75mg ergometrine when taking 12 HBWR seeds! ...and there are possibly a few other ergot alkaloids in the seeds which might add some more vasoconstrictive potential to the ergometrine effect. This is the reason for: - lips/fingers turning blue and tingling sensations in the extremities (another symptom is not feeling your periferal pulse, meaning your pulse in the extremities like fingertips pulse) Yes I've found myself with completely blue lips some morning, after a night on 10 hbwr seeds. - bad cramps in the legs: quite a few people (including a few one that I know personally) complained of some intense (very painful) cramp-like pain in the legs...this is also caused by the vasoconstricting effect of the ergometrine...needless to say that these people should NOT use HBWR. Now, what's even more freaky is that if someone has some blood vessel anomaly in his brain which is latent and non-diagnosed yet (which is less uncommon that one may think), such as a small aneurysm/Ischemy in the brain, then a small dose of ergometrine could put this person in some serious life-threatening condition. This is the reason why doctors tends not to give ergometrine to treat chronic migraine: even if ergometrine can be a very efficient medecine against migraine (in very small dose, 0.1mg at most), doctors prefer to avoid it as they know that there's still some risk for the patient to have some small "benin" ischemy in his brain that the ergometrine would turn into a crappity smacking dangerous aneurysm. I think boys should also be concerned by vasoconstrictive effect on their testicles (balls): methyl-ergometrine is given to women in case of uterus haemorrhage (the vasoconstrictive effect stopping the haemorrhage by significantly reducing the circulation of blood in different part of the body including the uterus). As said ergometrine has a similar effect. The problem is that men's testicles are much more delicate than a uterus and excessive vasoconstriction could lead to sterility. Symptoms of excessive vasoconstriction in testicles are the balls turning "brownish" and your thingy reduced to some ridiculous size (smaller than a child thingy). Normally HBWR seeds should not cause big troubles for one's balls in normal doses (8-12seeds) but I have no idea of the consequences of regular use or heroic dosages such as 16-20seeds. I mean the ergometrine concentration in the seeds isn't big enough to lead to gangrene, but there is no way to know how harmful it can be to your reproductive system. I guess that if there was serious risks with occasional use, we should now it by now as LSA seeds have a long history of human use, but we have no real info about regular/massive use consequences. If there are any people on this forum who have been using HBWR seeds massively at some point of their life and then, later on, had a baby I would be happy to hear them...that would somewhat reassure me about heavy use of HBWR side effects... Also important, as HBWR & morning glory & ololiuqui contain vasoconstrive ergot alkaloids, LSA containing seeds are not to be used if: #lsa seeds makes you feel bad painful "cramps" in the legs #Life long inherited blood diseases which can cause a variety of symptoms, including mental health problems (porphyrias) #pregnancy (pregnant women) # Decreased kidney function # Decreased liver function # pancreas troubles # Decreased lungs function # Disease involving the blood vessels # anemia # hyperthyroidism # Elderly people # Heart disease # High blood pressure #cardiovascular troubles (hypotension/hypertension troubles) # Infection of the blood or body tissues with pus-forming or other pathogenic organisms (sepsis) This list is something serious, no joke. Also do not combine high dosages of LSA seeds with too much alcohol or depressants (serious risk of respiratory depression which is really dangerous) PS: I made lots of researches before posting this text, and in order to give valuable info I asked my mother which is a gynaecologist (often using ergometrine) about risks, side effects, active doses and effect of excessive doses. Also, if you ever found yourself involved into some serious vasoconstrictive effect from any stuff (fingers turning blue, balls turning brown), then taking a really hot bath might relieve it (this could be a good solution if you ever get some unbearable leg pain on lsa seeds) The only thing I would add to this, is that the doses most use to treat CH, whether RC's (ololiuqui) or HWBW's are most likely safe. But anyone dosing with LSA should always be aware of the symptoms of ergot poisoning. Bob