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Showing content with the highest reputation since 08/22/2018 in all areas

  1. 3 points
    Hello gang: I need to report in. I'm Checkin' in like Gunga Din. As I posted over a year ago: "However those of you who have let me whine here for the last decade or more know that I keep the [ triptan] injections handy - and I take a healthy dose of Verap. every day all year - I have the big big O2 tank in the hall all year - I have tried a visit to the Portuguese wizard, busting with shrooms, Chinese doctor and herbs - nothing but licorice water for a week, water water water, exercise rapidly, ice on the carotid artery, steroid dose pak, Cluster vitamin regimen, Opioids, benzos, advil, melatonin, a Shaman in the Navajo tradition, Hot water pads, every other god dam thing. In the end; every single cluster cycle required absolute submission to the Beast in varying amounts before I can see the light. " By chance, this year in April which is the inevitable early part of my annual cycle, my mother-in-law brought me a bottle of CBD oil made from Hemp - no cannabis no THC . Having tried all of the crazy stuff above I am open to anything. The beast came knocking one evening in April it was the first of the season that was more than a shadow. I assumed the position on the floor and got my ice bag. Then I took a full ml. of the CBD sublingual. The attack aborted in minutes. I used that small hemp oil vial in a bout 15 days. My research led me to understand the "Entourage Effect " of cannabanoids. (I don't like to drop links in this board so Google it) I got my medical card and bought a CBD compound which is "Whole Plant Medicine". Not enough THC to even contemplate the tiniest buzz, but medially, enough to keep the CBD in concert with the other the other therapeutic compounds in cannabis. I have not had another attack since April. This is the first year in 10 or more years that that has happened. I know CH Father has commented that the results and reports on CBD are all over the place and this I see as I have looked on the boards. However - having been here since the early days of the "old board" I just had to let you know of this amazing outcome. Now - I have felt the beast trying to break in on a few occasions, which to me only adds credence to the results I am having being attributed to the CBD. A PF summer -- who ever heard of such a thing ? I hope to keep reporting these positive results. Wishing you all well. TomSwift
  2. 2 points
    spiny

    Episodic CH sufferer - new here

    Not to rebut CHF's excellent post, but I would suggest one 60 and one 90. The 60 is not required to be capped when traveling, so you can have your mask attached to it on the road. It is not an issue for me to lift and load. BTW - I am old with a torn rotator cuff, so that says something. A 90 will last longer of course and I have found the 60 very hard to come by. So, I use one of each and try to keep at least one completely full at all times. Yes, I can haul the 90 too, but it is heavy. Of course the shortage of 60's may be just the people I have to deal with! It really is easy to set up. Just know not to use grease, oil or any lubricant or teflon tape on the threads of the tank when you screw on your mask. You never use those around O2. All that you really need is a big adjustable crescent wrench to attach the mask to the tank. Tighten the nut on the regulator as tight as you can. Turn the regulator off with the dial. Open the valve on the tank and listen - no sound means no leakage. With the regulator off, any hiss of escaping gas would be coming from the nut you just screwed on. I bought them for 'my welding set up' and needed two due to high cutting torch usage. Never had a question asked, just made the statement and paid for the tanks. Owning them, I can have them filled anywhere, not just at the company I rent them from. It is a plus if you travel. And I can go on a 'welding binge' and buy as often as I want with a smile. Hopefully this helps a bit!
  3. 2 points
    Re the Marijuana, during my last cycle (3-4 years ago) the common discussion was that "weed was a trigger" the conversation wasn't very nuanced and i suspect had more emotion than scientific backing - there were some people claiming it was helping them hugely. No one could talk about specific strains or indica vs sativa with any confidence. I have now read that some strains are indeed triggers, but also that some a huge help in busting shadows or just keeping the peak pain level down. Much of what i've read in anecdotal, but last week i experienced it first hand. Like you've i've smoke 15 years +, but this year i have switched how i obtain it and now know with much more certainty what i'm smoking. I had an 80% indica strain supposedly high in cbd, afghanii believe - and it was like someone had just popped the roof of my skull and let all pressure out. It was almost as effective as oxygen. What i have currently, a hybrid amnesia haze, if i have more than 2 or 3 joints before bed, i'll be up with a CH attack within 2 hours. I don't have any left to re-try the indica theory though - so not remotely scientific, but more anecdotal evidence. Your mileage may vary.
  4. 2 points
    Gail, I just posted the following elsewhere here at this board. We have been encouraged to make the disclaimer that using welding O2 is not medically recommended. It's amazing to me that you could abort with a can of Boost. That's great news. >>>Welding O2. The ideal mask is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You can get a standard non-rebreather mask from amazon. You can also get a regulator there. Recommending a specific regulator used to be simpler, because Harbor Freight had a perfect one that was inexpensive. You want one that has an adapter for a barbed fitting that will hold your mask hose most easily and effectively. CGA 540 is the type that fits all welding O2 tanks. This one at amazon looks like it would work: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?ie=UTF8&qid=1535222274&sr=8-1&keywords=cga+540+regulator And this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_11?ie=UTF8&qid=1535222716&sr=8-11&keywords=cga+540+regulator I just can't say for sure. A welding supply place will sell you a regulator, but they're typically expensive and don't have the barbed fitting (you can buy an adapter with that fitting at many hardware stores for a few bucks). You probably know your way around a welding business a little! You just buy a tank, or a couple of tanks, and do not mention that they're for medical use. 60 cu ft seems like a pretty good size, particularly if you get a couple of them. The bigger the better, of course, but since you have to bring them in to be "refilled" (replaced, actually, usually) you might not want to be wrangling anything much bigger than a couple of 60s. Maybe you'd also want a 40 cu ft for greater portability (car, etc.). You probably also want a cart, too.<<<< More to you, Gail. If you don't feel comfortable with the buying process because you don't know what questions you might be asked, it seems to a lot of people make up some cover story in case they're asked, like their nephew is coming to town and going to do some welding and asked you to pick up these tanks for him. You don't know nothin' beyond that. I believe you have said that you are nearly as old as me, maybe even a year or two older, so just a warning that it could be that tanks more than 40 cu ft will be kind of heavy to schlepp around. A 40 cu ft tank is about 1100 liters, so at 20 lpm that would be about 55 minutes' worth, and about 75 minutes at 15lpm. You might not need a flow rate that high if the Boost helped you, or you might not need much to abort, but obviously you're not going to get more than at most maybe 6 or 7 aborts/tank, and possibly fewer (particularly since my anecdotal experience, and that of some others, is that for some reason the O2 becomes less effective as more O2 has been used).
  5. 2 points
    FunTimes

    Taurine! WOW!

    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!
  6. 1 point
    Oli

    Taurine! WOW!

    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!
  7. 1 point
    3800 I would say get on the D3 regimen and add Benadryl during the day and Melatonin at bed time. When I am being hit at night I will sometimes sleep in a recliner keeping my head up above the rest of my body. This will sometimes get me 4 or 5 hours of solid sleep before being woken up with a attack. as far as the Melatonin I take up to 20-30 mg at bed time and this also helps but everyone is different so you might want to start out lower and work your way up to a dose that works best for you. If you add Benadryl to the D3 I would not take that at night with the Melatonin until you know how your body is going to handle everything.
  8. 1 point
    jon019

    oxygen supplier issues

    Hi Rowdy.... ….no insurance myself for many years....and this is admittedly a few yrs back....but I marched into a Lincare shop...WITH a script for O2...and committed to paying cash DOWN. Over the yrs it was "sometimes" a problem...but all depending on the particular shop MGR. Mostly they were happy to oblige...MONEY talks. Try a personal visit with the Mgr...a sincere face with a cogent narrative for a problem goes a long ways....otherwise CHf just gave ya a good alternative... Best Jon
  9. 1 point
    When I stopped smoking weed (heavily) aged 25 due to anxiety, my CHs started that same year. Took years to be properly diagnosed. Stopping smoking tobacco 2.5 yrs ago has lessened the frequency/pain of the cycles. Well, until this week... Everyone is different... with some common shared triggers/experiences. Whatever works is worth working with.
  10. 1 point
    Chuck, it sounds like CH pain, for sure, and the timing is CH-like. I don't think we've seen anyone here say that they have discovered a link between marijuana smoking and CH (and there are more than a few here who use it), but CH experiences are so different that it can't be dismissed. CBD oil, interesting, has been an effective abortive or preventive for many people. In the short run, if you're still getting attacks you could try quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Often that reduces the severity of an attack or at least reduces its severity. Read as much as you can in these pages for other ideas. And of course try to get to a headache center, where you're most likely to find a doctor who can give you a good diagnosis and possibly good prescriptions. Most general practice doctors and even most general neurologists are bad at diagnosing and treating CH. Consider the D3 regimen, which probably will help. Read about it in the ClusterBuster Files section, and look through some of the other files there, too.
  11. 1 point
    jon019

    Episodic CH sufferer - new here

    Hi Leah....welcome aboard...sorry you need to be here.. ...couple of thoughts: have you tried oxygen? Saved my sanity and perhaps my life. Kept tanks at home, in the car, and in the office. Even when travelling I was able to arrange for tank delivery to my hotel through Lincare….it was an easy online sign up. With the proper mask and technique it became a "normal" thing for me....and even coworkers got used to seeing me 'use"...without calling 911 :). Quick, easy, relatively cheap, NO side effects.....ya got nothing to lose. ...my abort of last resort is Zomig nasal spray (5 mg)….99% effective after O2 (rarely), meds (verapamil), and energy drink failed....with no rebounds and 18 hr window of "safety"...YMMV but might be worth a try... ...the D3 regimen is not as intimidating as it looks....while it's a bunch of different supplements....it is just supplements.....and even if ya didn't have CH it's good for you and very inexpensive. Get yourself a pill caddy and a routine and join the 80% who have found success... ...good luck with your training session....one of my proudest achievements was giving a sales presentation to some VERY important clients while getting hit with a 7-8 CH. I had to keep turning my head so they wouldn't see the tears coming from the hit side eye....and I don't even remember what I said...but we got the contract! And maybe you're one of the "lucky" ones...and stress is a prevent...just watch out for the wind down hit afterwards...those can be a bitch! Best Jon
  12. 1 point
    Mum3115

    Neuro recommended Clusterbusters

    I only became a member on Clusterbusters for a couple of weeks, but I cannot tell you how important it has been to be a part of this community. Today I took my son to his first appointment with a neurologist specializing in headaches. Quiet, soft spoken and required a little probing from our end but we left with hope. I was so delighted that he actually recommended Clusterbusters as a resource for help. He shared all the options we had to us, wrote a script for O2 with no hesitation, imitrex, and spoke to us about busting with seeds and mushrooms too. He also spoke with great optimism about Aimovig which just got approved in Canada. He said he’s had cluster patients on it during trial with great success! There is hope!! I have to thank CHFather, Batch, and Clusterheadsurvivor for all their support and guidance. I don’t know what I would do without this forum and their support.
  13. 1 point
    I so wish I lived near Connecticut. And I don't normally wish I lived anywhere in America. :/ Gail, you might be better off starting a new thread in the Theory and Implementation section, people will have a better chance of seeing your request there. If you live in the UK, PM me and I'll see if I can help in one way or another. MG
  14. 1 point
    Depending what country you are from the answer varies substantially. In the UK you would have to resort to "dark-net marketplaces" which i presume moderators would prefer i didn't expand on in public, as mushrooms were made illegal here back in 2005. In holland, just pop to your local smart-shop. There are routes however, a friend has been prescribed both MDMA and Psilocybin by a psychiatrist for micro-dosing to help in depression (mdma) and migraine (Psilocybin) - all supposedly legally - no idea how though.
  15. 1 point
    I agree with all what has been said above. Diagnosis can be complicated and it can take a long time before getting there. I have experienced it myself. As a lifelong "hardcore" migraine patient, I started to experience something that looks like cluster headaches 8 years ago during my migraine attacks. Around 1 hours of a sudden increase in very sharp excruciating pain around temple and eye together with autonomic symptoms and sudden restlessness. I found it all very weird as it was clearly very different from the usual migraine attacks. For a long time i thought it was caused by taking triptans but these bouts kept coming back in a vague "cluster like" fashion. I did not trust the entire thing and finally made an appointment in the headache department of the university hospital here. After talking for 2 hours with the doctor and answering all kind of questions, he diagnosed me with cluster on top of my migraine and prescribed me oxygen. And thanks the man ever did that because oxygen is saving my life currently !! My GP doctor still doubting the diagnosis... for him it is migraine and he do not believe migraine attacks can generate cluster events. So you see even doctors sometimes don't agree with each other. In July this year I had my second appointment in the hospital. Now I did my homework ... detailed headache diary, detailed reports of a few of these headache with detailed description of every symptom that appears every 10 minutes (that was hard to do during such a painful attack !) and after going trough all these materials and discussing again with their colleagues, the CH diagnosis was again confirmed. When my GP saw the diagnosis confirmation, he says he is still not convinced. They also give me verapamil but after 5 weeks of taking this, with their proposed doses increases, it did not do anything so I stopped it. I ask my GP if I should go for a second opinion in another headache clinic but he told me it will not make much sens as they will probably confirm the same. And as long as the oxygen does its work, why bother ? In the meantime I have done a lot of research myself. Maybe they were confused with migraine with cranial autonomic symptoms which can be very tricky to distinguish from CH. Maybe I need more accurate data for my diagnosis. Recently I was reading on clusterheadaches.com that in rare occasions "migraine and CH can blend together in one" referring to a few studies that indeed seem to confirm my case. I also have the impression that the last two years, the migraine (which I have already since age 8) is getting weaker and the CH character of my migraine attacks is becoming more and more pronounced. So it is constantly evolving. I have been very bad since May but now it seems to have stopped since 3 weeks. I started to take the vitamin D regime since 1 August so maybe that contributes, or it is just the end of a cycle. So as you see, it can take time and patience to come to a diagnosis and maybe it will never be entire clear especially if you are a borderline case. Best what I can advise you is to collect as much as possible accurate data. Write down everything what is happening, all the symptoms with their start and ending times etc... Also film yourself during an attack. Your behavior can give a lot of info to the doctor. All the best ! siegfried
  16. 1 point
    Oli

    Taurine! WOW!

    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.
  17. 1 point
    jon019

    Taurine! WOW!

    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
  18. 1 point
    Oli

    Taurine! WOW!

    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!
  19. 1 point
    Batch

    Vitamin D3 Regime Side Effects

    Hey Mum, In over 7 years starting well over 700 CHers on the anti-inflammatory regimen, there haven't been any reports of leg pain as a side effect. How old is your son and how much does he weigh? Take care and please keep us posted. V/R, Batch
  20. 1 point
    FunTimes

    Trying to stay positive

    That is great!! I am setting up to have a big cook out this weekend, My son told me he has my back if I can not make it through the day and get hit with a CH. The reason I and I would think most people visit this site is for just this.. A little reassurance goes a long way Thanks
  21. 1 point
    Ammo

    New guy

    Hey guys just an update, been on Benadryl for 3 days and been pain free for 2 days still have moderate shadows but have avoided the o2. So far so good....
  22. 1 point
    jon019

    Is weed that bad for CH?

    Double ditto...sometimes it was the only thing that got me through.......
  23. 1 point
    Roadie

    Is weed that bad for CH?

    Ditto this!
  24. 1 point
    Racer1_NC

    Is weed that bad for CH?

    I've never indulged myself but after being around many, many cluster people I've heard a range of comments....it doesn't help and it doesn't hurt being far and away the most common. I've also heard a few swear it helps....and a few swear it's a trigger. Damifino. I do know when I was a tobacco user even the thought of lighting up during an attack would make me worse....but then the first thing I wanted after the pain was gone was a smoke.
  25. 1 point
    Roadie

    Is weed that bad for CH?

    Shadows can mean several things to me. Yes - it's the feeling that an attack is coming on, but often it doesn't. These can last for a few minutes or simply just be sudden bursts of CH pain. It can also be the feeling that you've been hit with a low level attack - one that isn't bad enough to treat. I get these a lot at the moment. It feels like an attack is starting but then it levels off and never really gets going. The feeling can linger for hours - sometimes even the whole day. After an attack, I'll get constant "reminders" of the attack, as if my body is suppressing the attack but it's trying to push through again. I call these 'post-attack' shadows. Lastly, and most bothersome to me, are the bouts of constant pains I get. I've had lots of these bouts. Some days I'll just get repeated nasal blocking on my right side accompanied with sore/burning pain that worsens with each cycle of blockage. I'll get days where I simply have a continuous burning/piercing pain behind my eye. I'll get days where I have the nagging ache in my head that I get with CH attacks but never serious enough to be a real attack. Throughout the whole cycle, I'll be in constant fear that attacks are just about to start but this has actually only ever happened once or twice. These bouts of shadows usually don't result in full-blown CH attacks. I recently spoke to another CH sufferer in the UK who recognised these symptoms in himself.

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