CHfather

I hope you get to try that and it works, TTS! There was a thread here back in 2011 where a couple of sodium oxybate studies were mentioned. See tenth post down on this page, from shocked: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1324654070/32 I'm not sure how much more of the thread addressed s.o., but there was an interesting response (a few posts farther down) from Lieutenant2, who at that time was trying GABA for his CH. As I recall, he had good results at first (with the GABA), but then they faded. Unfortunately, he also kind of faded off the board around that same time. I miss him -- always searching in interesting ways. Do you think you might want to try ketamine? It seems like it's been a useful "last resort" for some when nothing else is working.

So happy to hear from you, Ting, with such great news. I think of you often. Hope your daughter is doing well, too!

You'll probably want to try just one. The licorice root might work faster, I think (but pay attention to the cautions -- and if you decide that the D3 might be better, go for that (and you might want to get on the regular D3 regimen in any event)). Of course, I think Tony's thoughtful advice is worth considering. Regarding O2, it sounds like for at least one of your bad attacks (when you were golfing) maybe you were out of reach of quick access to your O2. So it might be that your 15 lpm system is generally fine. Most people do find, however, that the O2ptimask alone significantly reduces abort time, as do breathing strategies that are abetted by a higher-lpm regulator. So you might add those things to your preparations for next time.

Great advice from Jeebs. To learn more about getting more from your O2, please read the CB Oxygen File that is under the black and white MENU tab on the left side of the page. Don't miss this important point: If you can, go for something high in caffeine and taurine. Shots tend to be easier to get down faster. The Monster Hitman Sniper shot has a whole lot of caffeine; so does the Monster drink in the blue can. (For most people, the caffeine doesn't prevent them from getting back to sleep.) Since getting busting supplies can take a while, you might want to consider the licorice root method. You can get the licorice root extract at any store that sells natural medicines. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Also, for some people the vitamin D3 regimen has quickly ended cycles or reduced their severity: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

p'fluff, here is the main part of the description of CH from the Clusterbusters.org website (https://clusterbusters.org/?page_id=46): >>>The attack usually involves severe pain on just one side of the head, apparently centered behind the eye or between the eye and the ear, or between the eye and the top of the head. The pain is a steady and severe burning and penetrating sensation, as if a red-hot spike were being thrust through the eye and into the brain, and then twisted. Other symptoms accompany the pain. On the same side as the pain, the eye may become red and flow copious tears, the eyelid may droop and the pupil may become smaller. A very runny nose and/or heavy congestion is common. There are cluster attack behaviors that distinguish them from migraines or other types of headache. Cluster sufferers cannot lie down or remain still, but feel they have to pace around or move in some way. In the worst attacks, they may crawl or roll on the floor, pound their fists on their heads or the floor, or even pound their heads on the floor or wall. Muttering, swearing and screaming is common, escalating with the severity of the pain.<<< You definitely describe many CH-related things, particularly the severity of the pain, the nature of your reaction to it, the other symptoms (stuffed-up nose), and the way cycles come and go. I'm sure it's not really necessary to tell you that you should get to a headache specialist as soon as possible. A general neurologist is as likely to misdiagnose CH as to recognize it (sinus headache is one of the top misdiagnoses). Drat that Bejeeber for sneaking in ahead of me and already saying this. Having a cycle that occurs regularly in a particular season is often true for people with CH. For most people with CH, smoking is not a trigger (but for some it is). The most common trigger is drinking alcohol. In the early stages of CH, some treatments help, or at least seem to help. Typically, tramadol, opioids, and Afrin are not effective for treating CH. If you have CH, the first thing you need is oxygen, which is the best and safest abortive. Other medications sometimes help a lot in the early stages. There are natural remedies, legal and illegal, including the use of hallucinogens (or "busting"). We can tell you more about what to do if you become more convinced that you have CH, but seeing a specialist doctor should be your first action. And if you do see a doctor, be prepared to insist on oxygen if it is determined that you do have CH. Even doctors who correctly diagnose CH sometimes fail to prescribe oxygen.

This is one where I'd particularly like to see the whole article. (Research done in France.) Here's what the abstract says: Introduction The sphenopalatine ganglion (SPN) has been proven to be involved in various types of facial pain syndromes. Management of these cranio-facial pain syndromes can be challenging, and existing specific treatments are sometimes inefficient and may fail. The purpose of this study is to describe and evaluate alcohol SPN in the management of cranio-facial pain. Methods Forty-two patients suffering from refractory facial pain who underwent 58 consecutive SPN were included in this study between 2000 and 2013. Patients were divided into three groups: group “cluster headache” (CH), group “persistent idiopathic facial pain” (PFIP), and group “Other”. Pain was assessed using Visual Analogue Scale scores (measured immediately before and after procedure and at regular intervals following the procedure). Alcohol SPN was considered to be effective when pain relief was equal to or greater than 50 % and lasting for at least 1 month. All procedures were realized ambulatory under CT guidance and consisted of an injection of 1 ml of absolute alcohol. Results Overall efficacy rate of alcohol SPN was 67.2 %, with mean pain relief duration of 10.3 months. Procedure was graded either not painful or tolerable by patients in 64.2 %. Analysis showed a higher efficacy rate in the groups CH (76.5 %) and PFIP (85.7 %) compared to the group Other (40 %). No difference was found between groups regarding the recurrence rate. Conclusion Alcohol SPN under CT guidance appears as a safe and effective treatment of refractory facial pain, especially in cases of cluster headache and persistent idiopathic facial pain. http://link.springer.com/article/10.1007%2Fs00234-014-1354-y

Not talking about a suppository as an abortive, doc. Not recommending it as anything. Just saying that a couple of prominent folks here have discussed taking seeds as suppositories. I googled for those quotes; here are a couple: spiny: >>I know seeds can be taken via suppository<< Ricardo: >>as funny as the "Hawaiian Baby Woodrose Seeds and LSA Suppositories" link is, it is also a serious article that has a real way of bypassing any sort of nausea or bad taste<< This is the link Ricardo was referring to: http://www.neurosoup.com/hawaiian-baby-woodrose-seeds-and-lsa-suppositories/

This hand-held, portable device, which is supposed to abort cluster headaches, was discussed at last year's CB conference, and some folks from this board participated in clinical trials. As I recall, at least some of them felt that it sometimes worked pretty well. I just checked their website, and it appears that it's available in several countries (not the US), including Canada, Italy, and the UK. Wondering whether anyone has got one, or looked into it? Since it generally was not as effective as oxygen (as I recall), it doesn't seem like a huge breakthrough, but maybe the easy portability could make it a good alternative in some situations, such as when traveling without oxygen(???). And maybe they'll make it better based on the trials (???). Website: http://www.electrocoremedical.com/gammacore

This reminds me of an article I was reading the other day from Scientific American, about the so-called "second brain" that resides in our intestines (the "enteric nervous system"). The whole article is pretty interesting, but there were two points in it that I found possibly somehow relevant. 1. "The enteric nervous system uses more than 30 neurotransmitters, just like the brain, and in fact 95 percent of the body's serotonin is found in the bowels." Reminded me of the suggestion made more than once by someone (Ricardo, I think) of using tryptamine suppositories. 2. "Scientists were shocked to learn that about 90 percent of the fibers in the primary visceral nerve, the vagus, carry information from the gut to the brain and not the other way around." I was thinking about that gammaCore device that was previewed at the CB conference and tested by some folks, which works by affecting the vagus nerve. (I'm going to post something about that in another thread.) Here's the Scientific American article: http://www.scientificamerican.com/article/gut-second-brain/

I use Firefox. Like I said, I did absolutely nothing different from the first time to the second: e.g., didn't clear my cache first. Just typed clusterbusters.org into the address bar each time. First time I got that error message; second time it let me in.

Working fine now (without trying anything except what I had done before), and the doctor list is where it was said to be (https://clusterbusters.org/?page_id=455).

Oh, didg, I am so, so sorry to read this. People have surprised their doctors before, and we all know you're not the type to leave a stone unturned. Wishing for the best. Jerry

I wanted to check this out -- but I can't even connect to the general CB site. Secure Connection Failed An error occurred during a connection to clusterbusters.org. Peer's Certificate has been revoked. (Error code: sec_error_revoked_certificate) Â Â The page you are trying to view cannot be shown because the authenticity of the received data could not be verified. Â Â Please contact the website owners to inform them of this problem. Alternatively, use the command found in the help menu to report this broken site.

very sorry for how much you are suffering, muneca. it doesn't sound like you have cluster headaches, from what you describe. you do seem like a very good candidate for disability insurance. we have had some discussions about that here. several people here have applied on their own and won their cases to receive social security disability benefits. you can read about the process and requirements for making that application here: http://www.ssa.gov/dibplan/dqualify.htm. if you meet the basic criteria described there and you don't want to pursue this on your own (or with the help of someone like your sister), you can probably get a lawyer to take your case. there is very little up-front cost to you in doing that. the lawyer's fees are not collected unless you win. if you lose, the lawyer doesn't get paid. when i say "very little up-front cost," that's a relative thing -- there are fees for things like copying your files, and they can add up. but by far the biggest cost item, the attorney's fees, are not charged unless/until you win, when it's taken out of part of the benefits you receive. there are many law firms that specialize in disability cases. here is a link to one of them: http://ssd.binderandbinder.com/google/?wm_crID=20102154&wm_lpID=40732117&wm_ctID=399&wm_kwID=19373890&wm_mtID=1&wm_content=0&wm_g_crID=46673559550&wm_g_kw=%2bssdi&wm_g_pcmt=&wm_g_cnt=0&wm_g_device=c&gclid=CM_ogJ7hsb4CFe47MgoddzQAaA&wm_kw=%2bssdi&utm_source=google&utm_medium=cpc&utm_term=%2bssdi&utm_campaign=social+security+disability&wm_sd=1&wm_v=google. like i say, there are many such firms, and also many smaller local firms that will handle a disability case. best wishes to you.

Vitamin D Deficiency Predicts Prostate Biopsy Outcomes Abstract Purpose: The association between vitamin D and prostate biopsy outcomes has not been evaluated. We examine serum vitamin D levels with prostate biopsy results in men with an abnormal prostate-specific antigen and/or digital rectal examination. Experimental Design: Serum 25-hydroxyvitamin D (25-OH D) was obtained from 667 men, ages 40 to 79 years, prospectively enrolled from Chicago urology clinics undergoing first prostate biopsy. Logistic regression was used to evaluate the associations between 25-OH D status and incident prostate cancer, Gleason score, and tumor stage. Results: Among European American (EA) men, there was an association of 25-OH D <12 ng/mL with higher Gleason score [ch8805] 4+4 [OR, 3.66; 95% confidence interval (CI), 1.41–9.50; P = 0.008] and tumor stage [stage [ch8805] cT2b vs. [ch8804] cT2a, OR, 2.42 (1.14–5.10); P = 0.008]. In African American (AA) men, we find increased odds of prostate cancer diagnosis on biopsy with 25-OH D < 20 ng/mL [OR, 2.43 (1.20–4.94); P = 0.01]. AA men demonstrated an association between 25-OH D < 12 ng/mL and Gleason [ch8805] 4+4 [OR, 4.89 (1.59–15.07); P = 0.006]. There was an association with tumor stage [ch8805] cT2b vs. [ch8804] cT2a [OR, 4.22 (1.52–11.74); P = 0.003]. Conclusions: In AA men, vitamin D deficiency was associated with increased odds of prostate cancer diagnosis on biopsy. In both EA and AA men, severe deficiency was positively associated with higher Gleason grade and tumor stage. Clin Cancer Res; 20(9); 2289–99. ©2014 AACR. http://clincancerres.aacrjournals.org/content/20/9/2289.abstract?sid=cbc9cfe2-dc3f-4201-a045-bb67995dd244

No idea whether this might also somehow be applicable to CH, but some big guys (Goadsby, for one) apparently think it has great promise for migraines (which some people here also experience). May 5, 2014 MINNEAPOLIS -- May 5, 2014 -- Monoclonal antibodies show promise for the prevention of migraines, according to 2 studies presented at the 66th Annual Meeting of the American Academy of Neurology (AAN). Both drugs are directed against a relatively new target in migraine prevention -- calcitonin gene-related peptide (CGRP). One study involved 163 people who had migraine from 5 to 14 days per month. They received either a single IV dose of a drug called ALD403 or placebo, and were followed for 24 weeks. Those who received the drug had an average of 5.6 fewer migraine days per month -- a 66% decrease compared with 4.6 fewer days per month for those who received a placebo (52% decrease). Sixteen percent of those who received the drug had no migraine days at 12 weeks, while none of those who received the placebo were free from migraine at that point. There were no differences in side effects between those receiving the drug and those receiving the placebo. “These results may potentially represent a new era in preventive therapy for migraine,” said Peter Goadsby, MD, University of California at San Francisco, San Francisco, California, who is an author on both studies. In the other study, 217 people who had migraine 4 to 14 days per month received biweekly subcutaneous injections of either a placebo or a drug called LY2951742 for 12 weeks. Those who received the drug had an average of 4.2 fewer migraine days per month at 12 weeks (63% decrease), while those who received placebo had 3 fewer migraine days per month (42% decrease). Those who received the drug were more likely to have side effects including pain at the injection site, upper respiratory tract infections, and abdominal pain, but overall the drug was considered to be safe and well-tolerated. “Migraine remains poorly treated, and there are few effective and well tolerated treatments approved that prevent attacks from occurring,” said David Dodick, MD, Mayo Clinic, Phoenix, Arizona, who was also an author on both studies. “There is a huge treatment need for migraine. We’re cautiously optimistic that a new era of mechanism-based migraine prevention is beginning.” http://dgnews.docguide.com/new-drugs-offer-hope-migraine-prevention?overlay=2&nl_ref=newsletter&pk_campaign=newsletter

Yes, he is, yes he is.

slagroom, aap. (Only two Dutch words I ever learned. Translation, "Whipped cream, monkey.") Hey, really hoping everything will go well for you! Hoping preventive busting will keep you from having to be back in touch any time soon -- but we'll be here! Best wishes.

Well, didg, you're not asking for sympathy, but you and your husband certainly have my best wishes. I see that at least the prognosis is better for his kind of tumor than for many other forms of lung cancer. Hoping that things will turn out well for him.

This is just NOT TRUE. In fact, proper use of oxygen can often prevent later attacks. It's quite sad that such bad information has kept you from using such a valuable and important treatment. You must not have used your injections for 5 days before the shrooms will really work. That's why the oxygen is so important--it makes it possible to make it through all those days without an injection. We have a lot to do to educate you!! :)  Very glad you are here. I'm sorry to say that I never learned more than two Dutch words. Sad, eh?

No, no need to identify where you are. A strong energy drink or shot will be considerably higher in caffeine than your Coke, and it will have taurine, which some say helps. Maybe try a sugar-free version, as a way to possibly avoid the Coke vomiting. Shots are easier to get down fast and have as much caffeine as most of the full drinks. The heavy-duty version is Monster Hitman Sniper, but 5 Hour Energy or 6 Hour Power will work, I hope. Given that the Coke sometimes helps, you could also try just a strong cup of coffee. Whatever you use, drink it down at the first sign of an attack. Hoping this helps without upset. There are a lot of clinical trials showing that 40 mg of eletriptan (Relpax) works better on migraines than 100 mg of sumatriptan, so your doc's prescription isn't completely crazy. But for CH, you really want something injectable, not a pill. Pills are too slow. But it'll probably be costly with your insurance. There's a way to extend the injections so you get three from every syringe instead of one (we can point you to that info if you get to that point). Oh, man, all that stuff in your environment definitely is not good! Here's hoping we can reach some solutions. When you get O2, be sure you get at least one smaller tank (an "E" tank) as well as at least one big ("M") tank, so you have something portable that you can bring to school with you.

You should also check to see whether you can buy your own insurance through Obamacare. I don't think you have to be a US citizen to be eligible, but I could be wrong about that. I think legal visitors ("lawfully present immigrants") might be eligible. Here's the website for Minnesota: https://www.mnsure.org/individual-family/families/index.jsp  Do you have someone who could contact them and ask? The "open enrollment" period is over, but I think you get an exception if you are newly arrived in the US, so you could apply when you get here. All guessing on my part, but probably worth checking. Very hard for me to imagine how you could have tried everything except oxygen! As Jeebs says, that's your first priority, whether you can get it through insurance or in some other way. Welcome (in advance) to the US. My own family came from the Netherlands (grandparents). My father spoke Dutch.

M'Joe, I suspect that Cindy (1961mom, the first post in this thread) will see this, but you could send a PM to her (bottom of her post, the icon that says PM). I'll bet she can advise you.

You have to get oxygen!!!!! It's not even a question. I can't agree with calling your doctor "great" if he didn't prescribe it. If it's too costly with your insurance, you can probably set up a system using welding oxygen for less $. If you're studying architecture at Yale (where Dr. Sewell (RIP) was), I think that Paul Rudolph building would be enough to create migraines, if not CH! Have you tried an energy drink or energy shot at the first sign of an attack? That can help, sometimes a lot. Good luck with the shrooms. You could also try RC seeds for a probably-tripless dosing method. Stay in touch.

Did you get an OXYGEN prescription?? Most important thing you can have. What else are you doing for your CH? Considering busting?