Bejeeber Posted March 16, 2011 Share Posted March 16, 2011 This thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 Is getting hard for me to ignore over at the ch.com message board. I wasn't paying too much attention because it just seemed unlikely to be a major help (and wouldn't this have already been discovered?), but people are starting to pile on (check the last couple pages), saying they get relief in 2 days (???) Vit D3 15,000 a day looks to me to be the main player - I've seen some CH'ers report using only it, skipping the fish oil, and getting the same sort of results. I'm prejudiced though (vegetarian). [Edit 8/23/11: the more reports I've read since originally posting this, the more I'm realizing that following the entire regimen including cal/mag citrate, zinc, etc. is actually important and worth trying] Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 16, 2011 Share Posted March 16, 2011 Wow. Thanks! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 16, 2011 Share Posted March 16, 2011 Thanks bejeeber. vegetarian huh? Do you know what president Reagan's favorite vegetable was? ...James Brady Lee Ann bought some vitamin D for me and I have yet to try it. I am taking some right now. I need a break all of the sudden. I will hope... Dan 1 Quote Link to comment Share on other sites More sharing options...
John Posted March 16, 2011 Share Posted March 16, 2011 Started the D3 2 days ago...still awaited results Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 16, 2011 Author Share Posted March 16, 2011 Yeah Dan you might wanna treat yourself to a big 'ol 15,000 per day or so blast and besides being an official NatGeo Clusterbuster representative, you could be an official, um.....vit D3 guinea pig here too.... Man wouldn't that be cool if it actually worked. Hopefully your new vit. D stash is the D3 type? [Edit: whoa John you beat me to the post. Looks like you've also beaten Dan to the Guinea pigliness. Sorry that no miracle has occurred yet. Dang. Are you taking a high dose?] Quote Link to comment Share on other sites More sharing options...
John Posted March 16, 2011 Share Posted March 16, 2011 Yeah Dan you might wanna treat yourself to a big 'ol 15,000 per day or so blast and besides being an official NatGeo Clusterbuster representative, you could be an official, um.....vit D3 guinea pig here too.... Man wouldn't that be cool if it actually worked. Hopefully your new vit. D stash is the D3 type? [Edit: whoa John you beat me to the post. Looks like you've also beaten Dan to the Guinea pigliness. Sorry that no miracle has occurred yet. Dang. Are you taking a high dose?] No. I'm only taking 4000iu/day. I wanted to start slow because of taking other stuff as well-licorice root/skullcap tinctures. I also did not start the Omega 3 either though... Quote Link to comment Share on other sites More sharing options...
FRUSTRATED123 Posted March 17, 2011 Share Posted March 17, 2011 hey all, i will be your guinea pig, i am in between detoxing and busting so i am a good one to be a guinea pig. i will start today and let you all know what happens. i have been having 5-7 clusters a day so i am up for just about anything at this point. 15,000 iu's of vitd3 here i come. check back in later. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 17, 2011 Author Share Posted March 17, 2011 5-7 a day. Aughhhhhh that BLOWS. > Frust123, Here's really hoping you get a positive D3 surprise 8-) ( but never actually counting on it, or anything else for that matter). :-/ Quote Link to comment Share on other sites More sharing options...
FRUSTRATED123 Posted March 18, 2011 Share Posted March 18, 2011 thanks bejeeber, at this point i would eat dog crap if someone told me it would help. as i said i am in the process of detoxing so that i can bust and unfortunately for me, i have alot of drugs to detox from before i can bust, so i will try just about anything to get away from this pain. i am at my lowest low with these sob's. can't take much more. we will see what happens. i will keep everyone informed. thanks to all, because of clusterbusters, I DO HAVE HOPE THAT SOMEDAY I WILL BE PAINFREE!!!!! Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 18, 2011 Share Posted March 18, 2011 I'm on day 3 with 10k mg per day. No relief yet, but it has only been 3days....did I say that already? Quote Link to comment Share on other sites More sharing options...
met la Posted March 19, 2011 Share Posted March 19, 2011 hi everyone , i am new to this site , and i tried to post on the most recent board , i get these attacks all day long and sometimes in rapid succession ,have for 9 months now , fiorinol/codeine+gabapentin seems to be helping , but i can still feel the nerves in my eye ,just not as intense, was wondering if these chronic clusters can go through a period where they aren t as intense or if the drug is actually working , seems like i had some periods where they were better and worse , but this is considerably better, but i am sure that i am at the mercy of the doctors with this partial solution, at least i can work lately though, 2 big attacks a day average Quote Link to comment Share on other sites More sharing options...
met la Posted March 19, 2011 Share Posted March 19, 2011 i mean when i say i can feel my eye that i feel the nerves and the vertical nerve , that i don t even think is actually a nerve , can t find it on any diagram of the face or eye , been on this stuff for over a month and just wodering , is this a fluctuation or is it working? Quote Link to comment Share on other sites More sharing options...
met la Posted March 19, 2011 Share Posted March 19, 2011 oh and i get the very long attacks , 45-180 mins each , i know the fiorinal /codeine will stop the second one from coming , but not really sure if it helps the first attack but i get the eye pain throughout the day , and a few bad ones break through mostly at night and early in the morning, not to be negative , but lets just say that i didn t plan on being around much longer a month ago,and i am very tired of taking these pills all of the time, but i just want to be prepared maybe with some oxygen or something if this is just a phase Quote Link to comment Share on other sites More sharing options...
FRUSTRATED123 Posted March 19, 2011 Share Posted March 19, 2011 hello met la, i would like to suggest that you move your post to a NEW post under the general board with a Subject of: have questions, or need help. you will get alot more hits and more people will look at your post. I am afraid that your post is buried here and people won't see it. the people on the site are the best and i can guarantee you that you will get alot of help, but do mve it under its' own SUBJECT. Good Luck. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 19, 2011 Share Posted March 19, 2011 met la, so sorry you're suffering. i can tell you that there are many people here who were in the same psychological state as you some time ago who are now enjoying their lives again. it is not hopeless -- far from it. i can't answer your specific questions about whether it's just a fluctuation that you're experiencing, but i can tell you what practically everyone else here would tell you, which is that oxygen must be part of your CH arsenal. it doesn't sound like you have it now. you can read more about oxygen here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 when you have the basic idea, ask questions, any questions you have, and you'll get answers. i do agree with FRUSTRATED that you'd be better positioned if you start a new thread rather than being tucked away here . . . but people will probably still find you here. if you want to do more reading about what the folks here have found most helpful, you can start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886 it's tough being where you are, with all that pain -- very tough. but i hope you'll take my word for it: it can and will get better. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 19, 2011 Author Share Posted March 19, 2011 Hi met la, Agreed with F-123 and CHfather about the advantages of starting a new topic with this question so that you can reach the maximum audience. For now you're doing good to just have made it here and gotten a post in though. And yep, there sure are a lot of CH folk here who know all too well your concerns and where you're coming from. I'm personally familiar with the phenomenon of the long sustained attacks you describe. THEY SUCK. > The good thing about the fact that your current meds aren't bringing you dramatic relief is that there are still MUCH better things to try! Fiorinol/codeine in particular is something that I've never heard of any headache specialist prescribing for CH. If they can dull dull the pain a little I totally understand why anyone would take them, but really we need to get you on some very effective prevents/aborts. Gabapentin is one of the zillions of meds that I've taken in my pre-busting days, and I know that for me it could lessen the frequency of hits by up to 50% or so. Glad to see you're getting on the right track already - thinking about O2! Administered properly, it will likely bring a genuine new ray of hope into your CH experience. If I were you I'd certainly be seriously considering busting with mushrooms after any detoxing you can do from meds. Just make sure and check the warnings in the link Chfather supplied first. Some people have success with the much milder (side effect wise) and legal to order/possess RC seeds too, I'm just not sure if they would be the ticket considering your chronic status. Others will probably pipe in on that subject. HANG IN THERE met la - things could be very much better for you very soon. Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted March 19, 2011 Share Posted March 19, 2011 FYI, people that have chronic clusters do often go through high and low cycles. High cycle, when you're getting slammed on a regular basis and low cycle when you seem to have some good days and some bad days. Bob Quote Link to comment Share on other sites More sharing options...
met la Posted March 20, 2011 Share Posted March 20, 2011 thanks everyone for the info , i checked my blood pressure after taking fiorinol capsule and it was 91/78 so i started to thinking after reading another post , but i probably am just going in circles again , wtf is this stuff and why me? but thanks alot , i mean it ,nobody knows , except you guys , take an aspirin , your a wuss , etc etc is all i hear i just don t see how it moves around in your head ? seems like if something is broken , it would be the same thing broken all of the time ,but i have a baby alien in my head sucking the life out of me , twisting and turning hey any of you guys ever see that m t v show the head where he had the alien inside of his head , very funny but i am having a crappy day and i better go before the conversation turns negative thanks again Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 20, 2011 Share Posted March 20, 2011 met la, you've said it all here. it's heartbreaking for me to read it. for most people, oxygen is the beginning of the way out. can you tell us what you can do, or have done, about getting oxygen? Quote Link to comment Share on other sites More sharing options...
met la Posted March 22, 2011 Share Posted March 22, 2011 don t know yet if i will be able to get prescription for it , but i will discuss it with my neurologist ,i suppose i could fashion a mask , but i would hate to piss off the doctors with it at this point ,or the mushrooms, plus i am kindof scared i might freak out and rip my own face off or something but it is seeming more and more like this gabapentin is failing ,, seemed to help for a while , guess i should be grateful but i don t think it is working any more , since i went back to work it has gotten very horrible the last few days , just like last summer , been doing lawncare work and i have very light duty in the winter going to ask about verpamil , lithium, etc ,might bring a list with me , originally i had asked about triptans , because with the great doctors we have here , greatest on earth i am told , it seems like the only people who can get their hands on narcotics are the drug users , and since i am not a crackhead ,i had alot of trouble trying to get drugs maybe now that i have been on codeine for ?6months ,i am a crackhead though the fiorinol keeps the attacks off for about 5-6 hours,still not sure if it kills the first one , kept a journal for a while and it was 45 to 180 minutes before attacks ended,after a capsule the gabba seems to lessen the nerve pain around your eye ,which , it may still be doing even though attacks are becoming more severe as it is failing, if i am on enough fiorinol codeine and have taken gabba on time for a few days, i can feel the nerves in my eye and my nostril gets clogged , both eyeballs have veins in them , like i am having attack with 10 % nerve pain and 8% headaches strength , still get other side effects though which i haven t really tried to decipher enough to put into words , but there is something going on in head during attacks? of course you would have to already be on a capsule , too otherwise headache and nerves are very strong and you wait 45-180 min but nerves are less painful 70-80% of full strength most of the time but real headaches near full strength are breaking through medication more often lately,at least 1or two bad ones a day , starting to worry, can see repeat of last year all over , right when i had just started feeling better , but i can t afford to take any more time off of work , already will have to burn the candle at both ends to catch up , make up for last year ,and i am just getting the first side lit i can t beat the devil , or at least it is not going to be easy, used to want to buy a gun for headaches , now i am wondering if i will need one to knock over a pharmacy when my prescriptions run out ,,,life is a M F :-/ Quote Link to comment Share on other sites More sharing options...
met la Posted March 22, 2011 Share Posted March 22, 2011 oh yeah sorry about the d3 thing i am going to try to pick some up at the pharmacy , but i don t want to take too much then idiots will say that i caused the headaches with d3 , but i will get the biggest dose they sell 10k mg seems like alot maybe at gnc but i am wondering there are different forms of vitamins ,, what specific form of d 3 are you taking ? i mean the people who it is working for ? Quote Link to comment Share on other sites More sharing options...
met la Posted March 22, 2011 Share Posted March 22, 2011 ergocalciferol is vitamin d in my chewable vitamins , sound familiar ergot caf ergot ,,, but different compound or chmicals are also classified as vitamin d i think ? ergo ergot calcif calcium erol -----form the latin ??????????? Quote Link to comment Share on other sites More sharing options...
met la Posted March 22, 2011 Share Posted March 22, 2011 some facts from wikipedia Light-exposed mushrooms may provide up to 100% of the recommended Daily Value of vitamin D.[4] Vitamin D also modulates neuromuscular function, reduces inflammation, and influences the action of many genes that regulate the proliferation, differentiation and apoptosis of cells Vitamin D is a group of fat-soluble secosteroids, the two major physiologically relevant forms of which are vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol). prevention of hypocalcemic tetany while sufficiency prevents rickets in children and osteomalacia in adults The usual cause of tetany is lack of calcium, but excess of phosphate (high phosphate-to-calcium ratio) can also trigger the spasms. Milk-and-alkali tetany is an example of this imbalance. Underfunction of the parathyroid gland can lead to tetany. Low levels of carbon dioxide cause tetany by altering the albumin binding of calcium such that the ionised (physiologically influencing) fraction of calcium is reduced; the most common reason for low carbon dioxide levels is hyperventilation. Low levels of magnesium can also lead to tetany symptoms. Rebirthing-Breathwork, purposeful rapid breathing for one - two hours at a time; first causing hyperventilation, can sometimes lead to tetany. Cow grazing on rapidly grown pasture with tetany of the neck suggesting Grass TetanyAn excess of potassium in grass hay or pasture can trigger winter tetany or grass tetany, respectively, in ruminants. Osteomalacia in children is known as rickets nerve disease The most common cause of the disease is a deficiency in vitamin D, some of this stuff you can find on migraine sites ,or here o2 magnesium rickets is said to be painfull steroids etc , 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 22, 2011 Share Posted March 22, 2011 don t know yet if i will be able to get prescription for it , but i will discuss it with my neurologist ,i suppose i could fashion a mask , but i would hate to piss off the doctors with it at this point ,or the mushrooms The oxygen and the mushrooms are in two entirely different categories, met la. As I just wrote in another place here, oxygen works, it's very safe for most people, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one). Again, let me suggest that you look at this file, which will tell you why O2 is so very important, and which has some suggestions for getting your doc to prescribe it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 If your doctor gets pissed off at your insisting on oxygen, you probably have the wrong doctor. And you shouldn't have to "fashion a mask." It should be part of what's provided to you with the prescription. Or you can buy one. You really, really should be moving forward on O2. i will get the biggest dose they sell 10k mg seems like alot maybe at gnc but i am wondering there are different forms of vitamins ,, what specific form of d 3 are you taking ? i mean the people who it is working for ? From reading the ch.com thread fairly carefully, I don't see many people -- if anyone -- talking about the specific form of D3 they're taking, which leads me to think that any pill form must be okay. And I see some doing 10K international units (not mg), and some doing less. It's a lot of reading, but that's what you gotta do: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0 Quote Link to comment Share on other sites More sharing options...
met la Posted March 22, 2011 Share Posted March 22, 2011 i was just saying the chemical names and stuff on vitamin d are used alot in headache sites that i have visited , so you are definitely on to something and i know that gatorade is a big trigger no no for me anyway and it has phosphorus , magnesium , potassium , which if are in unbalanced proportions are suspect in this tetany stuff so also it says that these d vitamins are similar to steroids , which i read can cure headaches , but are not prescribed because of roid rage but i wonder if it is processed in the liver , how safe it is , and since it is used to get your bones to uptake calcium, perhaps it works similar to those calcium channel blockers ,maybe a combo of vitamins or vitamins and drugs to get rid of calcium in blood( by making bones and body absorb it) could have the same effect , but less stress on liver or at least be worth trying , and sunlight turns dvitamin d and d2 into d3 ( i think), which if you guys are like me , i am starting to think i am part vampire when there is nothing i have to do during the day and try to find out what else this stuff does in high doses in the meantime if it works hey , keep me posted, i am going to start at lower level than you guys for now though , maybe a little boost will make the meds more effective sorry , i have been drinking coffee , not a trigger for me , but helps clear my head sometimes,as you can see it goes in ten thousand directions at once , it s 3 am , can t sleep , woke up yesterday at 130 am with my head about to explode , took a nap earlier and it happened again, just sitting and waiting ,had a few since, but i am heavily medicated now, might try to see about getting some stronger neurontin tablets i am at 1600 mg, and f it some stronger fiorinol too, i am sick of taking pills , maybe the stronger ones will last longer Quote Link to comment Share on other sites More sharing options...
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