met la Posted April 7, 2011 Share Posted April 7, 2011 got a new prescription for maxalt , rizatriptan , waiting for headache to develope so that i can try it , but it seems expensive $30 + a pill , but wondering how long one will last , or if anyone here has had any experience with this stuff fiorinol seems to keep new headaches from forming , but it says on the label that this will not and that you can t use this stuff regularly seems useless cause i get headaches all day long , but i am going to try it , prob within the hour , but was just thinking , someone might have some useful info about it Quote Link to comment Share on other sites More sharing options...
met la Posted April 7, 2011 Author Share Posted April 7, 2011 i can feel the fiorinol wearing off , it is twisting and turning in my head ,won t be long by the way has anyone ever felt like screaming yourself to sleep at night in that anger management movie the guy says that line , but i really feel like doing it sometimes , however i am sure to get my ass kicked by everyone in the building Quote Link to comment Share on other sites More sharing options...
Cassidy Posted April 7, 2011 Share Posted April 7, 2011 I probably took every tripton made, over a 9 month time. They worked fine for me. But it just lead to needing more and more, which isn't good. Dr. took me off of them and started the usual drugs, like Beta blockers, topamax and so on. As I used more R/Xs the CH became worse and worse. Found CH.com, which led to CB. With less than one year of RX treatment, I had a good response to busting. No second thoughts after 5 to 6 years later. Still have a couple cycles a year. Only one cycle last year. I do believe that busting is the healthiest way to go. I've been away for a bit and need to get caught up with the board. So I don't know your history, but wanted to answer your question about triptons. Leslie Quote Link to comment Share on other sites More sharing options...
met la Posted April 8, 2011 Author Share Posted April 8, 2011 don t have a whole lot of history , car crash -chronic multiple daily cluster headaches-9months-still trying to figure it out - haven t been through a lot of drugs , but from what i have taken seems like they are all less than a full cure about 5 hours into it and i feel ok , shadow( like a knot) turning a little in the right side of my head still though , pops up every 20-30 minutes or so , just wondering how long they last for because i am using a crapload of fiorinol codeine and neurontin and any alternative to that would be nice if they last for a day maybe i can detox from some of this other crap , and it will be worth a hundred bucks , may stay on the neurontin though feels good to be pain free and not zombied out on codeine i don t think it gets me high just a funk feeling feel kind of normal right now , even if it is temporary , this is probably only the 7-10th normal day i have had in 9 months even with all of the pills , it never sleeps doctor said cluster headaches , but they switch to the left eye sometimes (rarely), so now he is saying migraines , not really sure anymore ,but i get zapped all day long with them everyday , not really sure about the pain scale anymore because i am medicated all of the time , but for the 2-3 months before i started with medicine i was slammed pretty hard everyday9-10pain scale i suppose , but now 9-10 maybe every other day and mostly 5-8s, and the fiorinol keeps them from coming in rapid succession so they are only 30-150 minutes long ,i kind of think it is a better prevent drug than abort drug , for my ha s anyway what is really a son of a bi is when it shifts to the left eye , not used to it in that eye , makes it even worse , plus i think the left side of my brain controlls higher functions than the right , it is like a total meltdown , total confusion and i don t know , you would have to experience both sides to understand , left is worse , so that makes the right eye a 9 on the pain scale , see the dilemma anyway my name is glenn in louisiana , i am still trying to learn about this ha stuff , but sticking with the doc s for a while , and wondering if they have ever cured anyone of these headaches Quote Link to comment Share on other sites More sharing options...
met la Posted April 8, 2011 Author Share Posted April 8, 2011 feels like it is wearing off already 7 1/2 hours , not worth 30 bucks that is for sure , but a useful experiment nonetheless , serontinin must have something to do with the cure , was reading that diet and levels of amino acids can help produce more serontinin , and now wondering if that d3 has a similar chemical structur to this Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted April 8, 2011 Share Posted April 8, 2011 Here's the thing.... Serotonin receptors are involved in the cure... But the Triptans aren't the answer for it. The triptans, people are finding, are changing the clusterhead's cycles.... In a lot of cases, for the worst. I.E. it's extending some peoples cycles! This is the LAST thing you want! You should look at getting some RC seeds, or HBWR, Mushrooms, or LSD. Any of these treatments can break/bust your cycle, and make it easier. They're all safe, and effective. I started out with RC seeds, which contain LSA. If you want to know more about busting then please read The Clusterbuster Files, found here : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files I highly suggest this thread : http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051922 Watch the video of Bob W. Second link down. It'll make a lot of things clearer. Good luck. Mystina Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 9, 2011 Share Posted April 9, 2011 Glenn, glad to have a name for you. Mine's Jerry. I remember your vivid early posts, but what I don't remember is whether we ever convinced you to get oxygen and use it. That's one way to potentially test whether it's CH or migraine or something else that you have, since oxygen works with CH but not migraine. Better, of course, to see a knowledgeable doctor at a headache center. I just looked at the place at ouch.com (another CH site) where they list recommended doctors, to see what there might be there in the Pelican State/Sportsman's Paradise -- but they just "updated" that page and it's not showing Louisiana at all. You might check there in a day or two to see if they've fixed that -- or maybe there's someone here who could help you locate a skilled doctor near you. Quote Link to comment Share on other sites More sharing options...
met la Posted April 9, 2011 Author Share Posted April 9, 2011 hi jerry , my headaches haven t stopped since 6-22 -10 so i am not worried about making it worse , but i am very interested in you guys and what you have learned about these ha s will the mushroom cure work for migraines? i don t think they are in season yet , but not sure 100% seems like i remember them growing in the hot part of summer ? triptan seems to be doing something though , haven t taken a fiorinol since 4pm yesterday so 28 hours, but i can feel the nerve in my eye hurting a little every hour or so, but it hasn t broken through the drugs yet , and i am not in codeine withdrawals so , 30 bucks was well worth it , break from codeine life is weirder than hell lately , never thought i would have to pay 30 bucks not to take a drug Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 9, 2011 Share Posted April 9, 2011 I had meant to give you this link to the OUCH doctors page, so you can check it for an LA doc when it's working properly: http://www.ouch-us.org/chgeneral/doctors.htm You didn't answer my question about oxygen, though. I keep thinking that you're missing an important piece of CH-fighting equipment. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted April 9, 2011 Share Posted April 9, 2011 hi jerry , my headaches haven t stopped since 6-22 -10 so i am not worried about making it worse , but i am very interested in you guys and what you have learned about these ha s will the mushroom cure work for migraines? i don t think they are in season yet , but not sure 100% seems like i remember them growing in the hot part of summer ? triptan seems to be doing something though , haven t taken a fiorinol since 4pm yesterday so 28 hours, but i can feel the nerve in my eye hurting a little every hour or so, but it hasn t broken through the drugs yet , and i am not in codeine withdrawals so , 30 bucks was well worth it , break from codeine life is weirder than hell lately , never thought i would have to pay 30 bucks not to take a drug I haven't had a migraine since I started busting with RC seeds. What they're saying is right though, if it's a migraine, it won't respond to oxygen, at all. Mystina Quote Link to comment Share on other sites More sharing options...
alleyoop Posted April 9, 2011 Share Posted April 9, 2011 As TV's Dr. House said, "LSD acts on serotonin receptors in the brain which can stop a migraine in its tracks" LSD, LSA & psilocybin, all, anecdotally will stop a migraine in its tracks. Quote Link to comment Share on other sites More sharing options...
met la Posted April 10, 2011 Author Share Posted April 10, 2011 so either way , the only way to know whether it is one or the other is to get some oxygen? thanks but it probably doesn t matter much one way or the other triptan took a bite out of it for now , keeps trying to establish , but keeps getting held back , tri nerve , ha , occip nerve , seems like it is battling in everyway to break through , but can t i think it has tried just about every way i can ever remember it starting in the last 48 hrs , its trying right now , side right , cheek bone, trinerve , i felt it in the left eye earlier , which is uncommon , i can see why the occipital nerve blocks were an easy sell though , or the tri nerve decompression , miserable though , i have alot of pills , but i haven t detoxed in a few months , so i guess this is as good as i can hope to be for now , let this crap get out of my body and see where i am , check myself out , at least another day if i can make it that long , guess few dozen more trys eventually this resiliant little focker going to win once or twice , but i have to keep drug free 1 more day ,except for the neurontin , did have like a small attack earlier , but it was short 10-15 minutes like it stopped before it really got going , ha s and nerve pains are getting stronger though it is gonna be a rough day , i can work till 4 , which kindof helps cause it is physical work , after that i am screwed , prob be up all night if i dont get one , so used to it coming now , hell i am up tonight Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted April 10, 2011 Share Posted April 10, 2011 Well, that's not the only way. Get diagnosed by a headache specialist if you can, or a neurologist. If you're not sure which it is you're having, it's a good way to tell. Mystina Quote Link to comment Share on other sites More sharing options...
met la Posted April 12, 2011 Author Share Posted April 12, 2011 neurologist can t seem to make up his mind , seems he flip flops around , he said it was cluster ha with some type of neuralgia? last time i visited he said something about migraines? my memory being screwed up isn t helping much either 80% of what we talked about i can t remember , except that we actually talked , can t remember all of the specifics , not sure if i even care anymore , as long as i can get some work done tommorrow Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted April 12, 2011 Share Posted April 12, 2011 Is your Neurologist a Headache Specialist? If not, you might want to see about getting in to one. There's a chance you could have all 3. I do. Mystina Quote Link to comment Share on other sites More sharing options...
met la Posted April 17, 2011 Author Share Posted April 17, 2011 kind of doubt that he is a specialist , but these triptans let me get off of the codeine , without even hint of withdrawals , which is a cool side effect , trying to get off of the neurontins too , just to gauge if i am getting any better , but the longest i can go is about 7-8 hrs , before the nerves in and behind my right eye start freaking out , might try to push the limit a bit , i think i am in a low cycle or between cycles , because my eye feels really f messed up , feels like rocky s face after the fight with appollo , this is only the third time i have noticed it , not sure if the cycle is restarting , or ending? probably doesn t matter much last time only lasted for a couple of days ,but headaches aren t real bad right now , very weak , comparatively speaking , of course . and centered around the right frontal lobe , eye nerves and trigeminal nerves are not really very active during the rocky periods i have noticed Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 18, 2011 Share Posted April 18, 2011 Glenn, OUCH just fixed the link to its list of headache specialists who are recommended by folks with CH. Here are the five from Louisiana: Baton Rouge: Dr. Steven Zuckerman Covington: Dr. Srinivas Ganji Lafayette: Dr.Steven J. Snatic Metairie: Dr. Daniel J. Trahant New Iberia: Dr. Timothy F. Himel I guess I'm going to give up wondering whether you're using oxygen; and if not, why in the world not. . . . Jerry Quote Link to comment Share on other sites More sharing options...
met la Posted April 18, 2011 Author Share Posted April 18, 2011 i don t gots none but i think i figured out the rocky eye thing , cycle is starting again , must have started to fade at beginning of month , which weirdly is what i have heard before 4 mos because it was early jan when i started gabapentin same same day or two eye feels like this , this cycle did end gently though compared to last, but that only means i wasted 30bucks for pill , which not 100% sure will even help at the deep end of it , it did seem to obliterate any withdrawal symptoms from codeine though , or else i just didn t have any this time , was starting to notice i would be walking around hours after taking a pill , and then pow , just out of the blue i would be wasted out of my mind when the headaches stopped , other than that pretty obvious duh sign , didn t even think cycle was ending wonder if i can find some deceased person who left behind an o2 tank or can you just go buy one without a prescription?? Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 18, 2011 Share Posted April 18, 2011 wonder if i can find some deceased person who left behind an o2 tank or can you just go buy one without a prescription?? Your freakin' doctor ought to be prescribing it, man, instead of just using you as a guinea pig for f-you-up drugs! Good grief! But, yes, you can also set up the whole thing, easily and relatively inexpensively, without a prescription--lots and lots of people do, using welding oxygen as the basis. Please click on this link and read it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 It tells you why your doc should be prescribing it, and it also tells you how to set it up on your own if your doc is such an ignorant a-hole that s/he won't prescribe it. Or call the one of those Louisiana docs in the OUCH list who's closest to you and get an appointment--I assume that if Clusterheads have recommended them, they know that oxygen is the first thing that should be prescribed. There is practically no one here who won't tell you that oxygen is essential for coping with CH. Plenty of folks here to walk you through the step-by-step of setting up your own, too, if it's not clear from that file. One thing that happens here is that people understand what you're going through, because they've been through it or a loved one has. That also means that we freakin' CARE about what happens to you -- you're in the family, brother. I don't want anyone going through what my daughter went through before she got oxygen. Probably nobody here can really help you regarding the various drug cocktails you're taking, in part because most folks here gave them up a long time ago. But oxygen is a fundamental source of relief for 9 out of 10 people who have tried it, and a combination of oxygen and busting (or oxygen and something else like licorice root and/or vitamin D3) is what has worked for most people here. Maybe the oxygen would give you the space to detox and try busting or licorice root or something that doesn't cause you to spend all day noticing awful symptoms and wondering what life-destroying drug you should take more of or less of. Quote Link to comment Share on other sites More sharing options...
met la Posted April 18, 2011 Author Share Posted April 18, 2011 these guys are gonna say that the welding oxygen is causing them , patience for now , i think that my grandma had some , but don t know what happened to it when she died, i just read the post from darkness into the light , sounds like me , just adding more and more to the drug coctail, i am gonna stop taking some of this crap it is ineffective ,now that the cycle has started twice on gabapentin , i am gonna throw it out , waste of time and money , and pretty sure the triptan drugs are useless for preventing ha s after about 7-8 hrs, have one more i ll keep for a really bad one , but it takes 35-45 minutes to work, so i am not expecting much Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 18, 2011 Share Posted April 18, 2011 these guys are gonna say that the welding oxygen is causing them My last words on this subject: (a) then don't tell them; and/or ( find a doctor who is not an imbecile. I guess my only hope is that some day you're going to do this. And my great sadness is that then you'll wonder why you waited so long. Been there, seen that. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted April 18, 2011 Share Posted April 18, 2011 Met la, You might consider while you are calling these doctors anyway, just ASK them if they routinely prescribe oxygen for patients with clusters. That way you can pick one who knows what the hell they are doing. Just a thought. Quote Link to comment Share on other sites More sharing options...
kaboom Posted April 18, 2011 Share Posted April 18, 2011 What area of LA do you live in? If not comfortable posting your location, feel free to PM me. Quote Link to comment Share on other sites More sharing options...
AlexItalian Posted April 19, 2011 Share Posted April 19, 2011 I tried this stuff some years ago. No interesting results but very boring collateral effects ( vomiting ). I tried it before than Sumatriptan, my doctor gave me.......some months ago meanwhile I was cleaning house I found a little box, ten years old, in an old closet......I know I am a little messy ....that time was useful Quote Link to comment Share on other sites More sharing options...
met la Posted April 20, 2011 Author Share Posted April 20, 2011 has anyone ever heard of eating or doing something with morning glory flowers ? saw a video of a guy using seeds to extract lsa ,but was wondering about the flowers , cause they would be alot easier to procure , or leaves bark? think that you smoke the flowers ? not sure? heard stories about kids getting high from the flowerssome kind of way but there are flowers everywhere right now Quote Link to comment Share on other sites More sharing options...
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