trytosurvive Posted June 5, 2014 Share Posted June 5, 2014 Has anyone heard of tried this? thanks New drug for cluster headaches Chronic cluster sufferers may benefit from sodium oxybate (Xyrem), according to a report in the leading neurology journal,Neurology. Xyrem is a drug approved for the treatment of narcolepsy but it is also being evaluated for the treatment of pain of fibromyalgia, chronic fatigue, and other conditions. It is well established that patients with cluster headaches often suffer from sleep disorders and cluster attacks often wake patients from sound sleep in the middle of the night. It is logical to consider drugs that affect sleep in the treatment of cluster headaches. However, traditional sleeping medications do not help cluster sufferers. Approximately 10% of patients with cluster headaches suffer from chronic clusters, which means that they have headaches for years without a break, while the other 90% have cluster periods lasting a few weeks to a few months every year or every several years. The article in Neurology describes 4 patients with chronic clusters who were treated with Xyrem with excellent long-term results. In one patient relief lasted 8 months while in the other three for up to two years. Side effects consisted mostly of dizziness, some memory difficulties, vomiting, and weight loss, however they were not severe enough to stop taking this medication. Xyrem is a controlled drug with potential for abuse and is dispensed only through a single centralized pharmacy. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 5, 2014 Share Posted June 5, 2014 Interesting stuff there TryTo, thanks. 8-) Quote Link to comment Share on other sites More sharing options...
trytosurvive Posted June 5, 2014 Author Share Posted June 5, 2014 Your Welcome, I'll eat these like chicklets if they work!! Back to chronic again. Just got my O2 tank filled. Nothing working, MM, HBRW, RC and all the rest. See you in Nashville, gotta find something. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 5, 2014 Share Posted June 5, 2014 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. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 5, 2014 Share Posted June 5, 2014 The write up on that stuff looks pretty scary. It's highly addictive, has a history of people committing suicide and can cause death when mixed with a LOT of common drugs. TryToSurvive - Are you currently dosing with fungus? seeds? J "Xyrem is a central nervous system (CNS) depressant. Alcohol and sedative hypnotics are contraindicated in patients using Xyrem. The concurrent use of Xyrem with other CNS depressants, including but not limited to opioid analgesics, benzodiazepines, sedating antidepressants or antipsychotics, general anesthetics, muscle relaxants, and/or illicit CNS depressants, may increase the risk of respiratory depression, hypotension, profound sedation, syncope, and death." Quote Link to comment Share on other sites More sharing options...
trytosurvive Posted June 5, 2014 Author Share Posted June 5, 2014 Yes, fungus and seeds. Seems like it got used to it. Have an appointment with my Doc next week. Going to talk to him about it to see if it is an avenue to explore or not. Thanks, CH Father, Ketamine is more abortive I think. Looking for a knock out punch. I will report back if I go with it. I'm sure I'll have a fight with the insurance co.!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 5, 2014 Share Posted June 5, 2014 Worth trying that mamajuana beverage, which worked with a couple of near-chronic folks (and not with others)? I might be wrong about how ketamine is now being administered. I do remember that it worked as a cycle-ender in some subjects when used as an IV "infusion." >>IV ketamine abolished the ongoing cluster headache episodes in all 4 cases treated.<< "IV Ketamine in the Clinic To Treat Cluster Headache." Maybe no one's doing that anymore (or never did, beyond that experiment). Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 6, 2014 Share Posted June 6, 2014 TryToSurvive, As Potter once said: Take enough fungus to see God(?) Making sure you wait 5 days between doses? Any scripts or supplements that might be blocking the bust? Curious why It's not helping. (gotta be a reason?, I'm very curious about those few occurrences that people say it doesn't help). Anything you can share might help others. J Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 6, 2014 Share Posted June 6, 2014 I think ThatHurts is asking good questions there, and I also agree with CHf that if it were me, I'd try the mamjuana. Well I'd try the mamajuana that is if I was in a place in a cycle where I didn't fear the alcohol content too much, or if I was able to conjure a non alcoholic version, or if had enough confidence that the alocihol in this context wouldn't be a trigger, which happily has been the case with at least one chronic CH'er for whom alcohol normally is a trigger. Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted June 6, 2014 Share Posted June 6, 2014 wow, I a 1 of 10% club....and I get chronic migraines and tension headaches too....makes me even more rare... Being the 2nd in Canada for DBS...I am done with using my body as a funnel for drugs....that have given more side affects than relief. But I do sure hope it works for some people.... No one episodic or chronic like me deserves 1 single attack.. thanks for the post Quote Link to comment Share on other sites More sharing options...
trytosurvive Posted June 6, 2014 Author Share Posted June 6, 2014 Would need non-alcoholic mamajuana, if I even smell alcohol it's off to the races for me. I have completely been off all meds for 5 months. No triptans nothing. I now firmly believe the use of that stuff contributes to added attacks, for me anyway. Just use oxygen and fight thru it. Did a huge dried fungus dose but didn't do the trick. Same with seeds. I admit it lessens the intensity but still feels like my teeth are getting ripped out, eye water, nose run etc. Just not banging head off wall. Not sure why, but this has been the case for me with all attempts at stopping CH. Use something new, it works for a month or so and then bang!! If anyone is similar maybe they have a particular dosing schedule or something I can follow. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 6, 2014 Share Posted June 6, 2014 TryToSurvive, If the fungus dose reduced the frequency and intensity, then I suspect you just need to fine tune the dose and/or schedule. (stick with fungus since it's much more reliable in chemical consistency) A bit of a hypothesis (because I'm a numbers crunching / analytical kinna guy) : Did you wait the 5 days between doses. While the majority have found through trial and error that 5 days between doses is the "sweet spot" that allows the frequency and intensity of the attacks to get reduced more and more with each dose. I wonder if some people's metabolism has a different "Sweet Spot" maybe some people need 3 days (or maybe 7 days?) between doses, due to metabolism or something else going on in their body / diet. If you had success, even limited success, I'd highly recommend giving it another go, and experiment (document along the way) what works better /or worse. #1 I'd say make sure you're taking a fairly high dose. That's repeatedly been proven there is a direct correlation of dose to CH reduction in those that have stubborn CH. PFW, J Quote Link to comment Share on other sites More sharing options...
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