Oli Posted August 20, 2018 Share Posted August 20, 2018 Hi All, New user here, long-term sufferer - read on saturday night about the Taurine and Caffeine mix - just wow! Wish my doctor could've reccomended this, i feel jittery from the fairly high dosage but wow, i can actually think straight for once! Supposedly being delivered home oxygen sometime this week after nearly 2 years of run-around by the NHS. Reading up on the psilocybin next! 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 20, 2018 Share Posted August 20, 2018 Welcome, Oli'. Let us know how the O2 goes. What caffeine/taurine combination did you use? An energy shot? Energy drink? Something else? Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 20, 2018 Share Posted August 20, 2018 Welcome and goot to hear you found some relief.. Let us know if you have any questions and what else is working for you. Quote Link to comment Share on other sites More sharing options...
Oli Posted August 20, 2018 Author Share Posted August 20, 2018 Bit more info, in case it's useful to others finding this page. I used to take verapamil, but didn't start on that this cycle, was prescribed the usual SumaTriptan nasal sprays, which are hopeless. Over the weekend when i first read about taurine on here i used 2x regular sized red bull cans to abort an attack and was very happy til sunday. I got the start of another headache and took 2x cans and it dulled things down to around a 2 on the pain scale, manageable but annoying. I had another can in the fridge but wanted to keep it in case one hit during the night. I was okay through the night - first nights sleep in a while. This morning i got magnesium & taurine supplements - 500mg each. Through today i've taken 3x Taurine tablets 1500mg total, 1x 500mg magnesium and got through a large can of monster energy drink, and one can of red bull just now, as i felt the tweaking coming on as i cooked dinner. I'm slightly worried that the pain comes back as soon as the drugs wear off, but this could just be my anxieties of getting a full-on attack. 9 days into my cycle which usually lasts 1 month. Also a bit worried about the total dosage of taurine / caffeine im taking as i have no idea whats actually in red bull - they list it in percentage (0.4%) but i wouldn't be surprised if im taking nearly 4-5000mg of taurine. Seeing the doctor tomorrow to chase the oxygen and check on my self medication routine. Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 20, 2018 Share Posted August 20, 2018 I don't know about the amount of taurine in various products, but I will say that one small 5-Hour Energy has twice as much caffeine as an 8 ounce Red Bull (and many 8-ounce Monster drinks). Just for quick drinkability, many prefer the smaller "energy shots" to the full-size "energy drinks," and you don't have to drink nearly as much to get a lot of caffeine. Quote Link to comment Share on other sites More sharing options...
Oli Posted August 22, 2018 Author Share Posted August 22, 2018 Red Bull 250ml = 80mg of Caffeine so im currently racking up less than i thought but in the low thousands of mg. Oxygen turned up today - give only one bottle, and appears i used 1/4 of the tank to extinguish one headache - it does seem to work well though! I'll be asking for a larger cylinder, and two of them - when this one runs out which i guess will be a couple of days. I am looking forward to a proper nights sleep tonight, the first in a week and a half. Fingers crossed! 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 22, 2018 Share Posted August 22, 2018 (edited) My favorites are "Wired"...with something like 320 mg caffeine and 3000 mg taurine per 16 oz can. Half a can was all I needed per hit (drunk SO COLD and FAST it hurt)....and "NOS" because of all the energy drinks it tastes the least objectionable....actually, depending on your frame of mind, pretty good. Really, the brand doesn't matter....as long as you get at least 100 mg caffeine and 1000 mg taurine...the only difference is taste and cost. Get mine at grocery outlet stores for about $1/can....or 5 hr energy type 2 oz for 99 cents. Red Bull (relatively low in the ingredients you need) was the first and advertises heavily and therefore most expensive...you don't need to pay for that...….. They all come with sugar-free versions now...just beware of aspartame...which can be a trigger like glutamates. And, in my case, sometimes I needed the sugar.... as low blood sugar was a trigger..... Best Jon Edited August 22, 2018 by jon019 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 22, 2018 Share Posted August 22, 2018 I use the 5hr energy drinks and keep them in the car, at work, at home and in my pocket. Small easy to carry around and they do the trick for me. I do not keep them cold and drink them at room temp. The first feeling I get I can sometimes drink one and push the cluster off totally. If you used 1/4th of your tank it sounds like you have a E size tank. I would ask for about 4 more of them and at least 2 M or M60 size tanks. My oxygen company is not the best at keeping track of how many tanks I have or they just dont care so if I order 4 tanks and only have 3 to return they still give me the 4 tanks. this is a good way to build up the stock pile you will need when the shit hits the fan! 2 Quote Link to comment Share on other sites More sharing options...
Oli Posted August 22, 2018 Author Share Posted August 22, 2018 Really useful info, thanks Jon. I'll be sure to seek out "Wired" - im on 2000mg of taurine through supplements, and i feel like they might be helping lower the peak level of pain, so im going to continue on those. doctor didn't comment either way on the levels of various things im taking but 111 was quite alarmed at the magnesium (lowest dose of anything im taking) so looking into that a bit more. Only oddity so far is about half an hour after the oxygen the hunger hit big time - i usually have a small appetite but it reduced even further over the last 10 days, feel like something has been lifted - trying to stay keto however. Roll on the end of the cycle! FunTimes - yeah i think its an E Size, they said i'd get 2hrs ish off it, and that i can get next day delivery on another tank - they were also confused as to why only delivering one. I'll see how helpful they are when i re-order in a day or so. The relief that the oxygen has worked this well is huge - its been such a journey to get here i almost had it in part of my brain under things that wouldn't ever happen, or wouldn't work. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 22, 2018 Share Posted August 22, 2018 2 hours ago, OliPassey said: i think its an E Size, they said i'd get 2hrs ish off it An e tank holds roughly 660 liters. At 15 liters per minute, you're going to get 44 minutes from it. Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 23, 2018 Share Posted August 23, 2018 Yeah...you need a BUNCH of e-tanks (and a rolling cart caddy)...or better yet a lesser buncha them... AND a couple M-60...at least twice as much O2 (someone help with volume please)….and serendipitously I was in Safeway today and "Wired" was $0.68/ 16oz can. Not too long ago I woulda filled a shopping cart at THAT price (normal $2-3 ea). Slight correction to caffeine level...it's 344 mg/16 oz (different varieties so read the label)…taurine is indeed 3000 mg...…. Best Jon Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 23, 2018 Share Posted August 23, 2018 Yeah, M-60 has almost exactly two and half times as much O2. Something my daughter has found (she uses welding O2) is that O2 loses its effectiveness when her tanks are about 2/3 empty. Someone else here said that was also true for them. IF that's true for E tanks, then the actual usable O2 is even less than what I said above. Quote Link to comment Share on other sites More sharing options...
Oli Posted August 23, 2018 Author Share Posted August 23, 2018 It was a H10H tank - around 2000 litres i believe, i now have another type but same capacity, just shorter and fatter. I used the first one to cure i think 4 or 5 headaches. The first was cleared in 10 minutes, the second 14, the third 15, and the last one took 40 minutes and then i had none left for the mop up - but i seem to have got away with it Managed to get a new tank delivered on a 4hr delivery (thank god, was panic'd i'd have nothing for overnight) and trying to get my GP to up the prescription to 4 or 5 tanks so i can through a weekend and onto Tuesday - they try to only do next day delivery so if i run out over the weekend i won't see a new tank til tuesday normally. Think that'll go through tomorrow and that should sort me for the weekend. "Wired" doesn't appear to be available in the UK, so i've gone for the 5hr energy thing - but so far ive not used caffeine as well as the oxygen - im not sleeping much as it is so if i can avoid the caffeine i will. Done a load of reading on psilocybin and it seems to offer a way to break the cycle, rather than just a headache. Ordered some up, due to arrive in 3-5 days, will report back on that - is anyone here using psilocybin ? When asking about micro-dosing, a friend told me "I would start with anything that affects glutamate v GABA balance. Magnesium is big, so too is progesterone v oestrogen balance, plus inflammation. Any inflammation will drive up glutamate, and most comes from symbiosis of the gut, issues with oxalates/lectins in the diet or mould exposure..." Still looking into what a lot of that means, but does it chime with anyone here? Also, Is anyone using an App or other tech to track their headaches and the treatment? I'm quite techy and have built a basic system, interested if others use anything, or if there is interest in a new solution. Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 23, 2018 Share Posted August 23, 2018 28 minutes ago, OliPassey said: It was a H10H tank - around 2000 litres i believe, i now have another type but same capacity, just shorter and fatter. I used the first one to cure i think 4 or 5 headaches. The first was cleared in 10 minutes, the second 14, the third 15, and the last one took 40 minutes and then i had none left for the mop up Well, that's about 80 minutes, so if you were running at 25 lpm it does work out to 2000 liters. But if less than 25 lpm, something's not right. A US "H" tank has more than 7000 liters. Not particularly important -- what you have is what you have -- except for planning purposes. Maybe you saw what I wrote above, that at least for some people, when a tank gets relatively low, the effectiveness of O2 seems to decrease. 33 minutes ago, OliPassey said: Also, Is anyone using an App or other tech to track their headaches and the treatment? I'm quite techy and have built a basic system, interested if others use anything, or if there is interest in a new solution. There's a fellow who has developed what I understand to be a pretty sophisticated tracking app. He posted about it here a couple of times, and he has a fairly active Facebook group called "Cluster headache -- patient driven research." 36 minutes ago, OliPassey said: Done a load of reading on psilocybin and it seems to offer a way to break the cycle, rather than just a headache. Ordered some up, due to arrive in 3-5 days, will report back on that - is anyone here using psilocybin ? That's why this group was formed. Your best bet is to post about that on a closed board, such as "Share Your Busting Stories." Quote Link to comment Share on other sites More sharing options...
Oli Posted August 23, 2018 Author Share Posted August 23, 2018 1 minute ago, CHfather said: Maybe you saw what I wrote above, that at least for some people, when a tank gets relatively low, the effectiveness of O2 seems to decrease. Yep - rings very true here as well. It actually gave me comfort reading that, the previous thing i had read was "oxygen can suddenly stop working" and i thought, oh - already ?!?!? Thanks for the info on the app, i'll be sure to seek it out. Grand, i've just found the other sections of this board (i found this site during an attack and hadn't ventured outside of this sub-forum yet, brain half forget there was more to explore) Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 23, 2018 Share Posted August 23, 2018 I have wondered whether the "oxygen suddenly stops working" occasions happened because tanks were too low. I might have even posted that at one point -- but it started working again with full(er) tanks. I think it's extremely rare for O2 not to work under other circumstances. Quote Link to comment Share on other sites More sharing options...
Billyjames Posted September 10, 2018 Share Posted September 10, 2018 I have not tried oxygen yet as from what have understood it aborts the headache in about 10 minutes, my headaches usually last 15 to 20 minutes and I get them every hour if not on indomethacin so wasn't sure it would be helpful for me. Has anyone out there with short lived frequent headaches found oxygen to be helpful ? Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 10, 2018 Share Posted September 10, 2018 Hi Billy...welcome! Gonna need sumore info. Have you been diagnosed with clusterheadache? Indo is used for HC...and I understand quite successfully...but I am unfamiliar with oxygen having any beneficial effect for that condition. Best Jon Quote Link to comment Share on other sites More sharing options...
Billyjames Posted September 10, 2018 Share Posted September 10, 2018 Hi Jon, I just found the hemicrania busting thread and posted there. Yes I have been diagnosed with chronic paroxysmal hemicrania, however several neuros have said they felt like it leaned toward cluster headache however none of the traditional cluster treatments have worked for me but had not tried oxygen or obviously mm. Indomethacin does work, though I have had to up my dosage as the years have passed and it has horrible side effects for me, depression, fatigue , confusion, all come when I take a pill and lift after 3 or 4 hours so I know it is the indo. Looking for options. Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 10, 2018 Share Posted September 10, 2018 Hey Billy, Multiple headache forms is uncommon but certainly not unknown...as we have folks here who well know. To have a neuro(s) who recognizes that is frankly surprising.... because it can be difficult to find one who even recognizes CH...or at least knows how to treat. So that's is a good thing. Are these headache specialists? Need more detail on "none of the traditional ch treatments have worked". Have you tried prevents like verapamil, topomax, other...what dosages....abortive triptans....what form...others...what? In my case Zomig NS (5 mg) gives me about an 18 hr "free window"...but I would think Imitrex injection might be effective...have you tried? Maybe....and I've never used myself since they take too long for standard CH hits....oral triptans (Maxalt, Amerge, Relpax, et al) would help with your rapid cycling.... which, btw, is an unusual form. NOT to say eliminative of a CH diagnosis. Personally I've had several cycles where the hits were 0-10-0 within 1-2 minutes...that is some scary spit! Also...when in deep cycle... hourly hits while sleeping...for which an oxygen strategy was absolutely effective and critical to my ability to function...... So then...OXYGEN. Whadda ya got to lose!? Relatively cheap, HIGHLY effective, easy to use, NO side effects (short or long term). Proper usage extremely important....minimum 15 lpm to start (less might work, which you would find by trial and error) a NON rebreather mask or direct inhale from a mouthpiece, immediate start at first hint of a hit. Again, I don't know if effective for HC...I DO know effective for CH. See these links: https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ http://www.clusterheadaches.com/O2/index.html MANY have found relief with the Vitamin D3 regimen.... https://clusterbusters.org/forums/topic/1308-d3-regimen/ Then, of course, energy drinks as discussed in previous posts this thread... Best Jon Quote Link to comment Share on other sites More sharing options...
gail CRUTCHER Posted June 18, 2019 Share Posted June 18, 2019 So, will an O2 concentrator work? Quote Link to comment Share on other sites More sharing options...
jon019 Posted June 18, 2019 Share Posted June 18, 2019 1 hour ago, gail CRUTCHER said: So, will an O2 concentrator work? ...very FEW reports of success for clusterheads....not pure O2 and lower flow than necessary.... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.