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CHfather

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  1. Like
    CHfather got a reaction from Brain on fire in Vitamine D3   
    The "basic non-busting info" file has updated info about where to see the D3 file.  But the blue "New Users ..." banner that you referred to has only basic busting info.  No D3 info; no "non-busting info."
  2. Thanks
    CHfather got a reaction from Matt19 in Oxymetazoline as an abortive medication for cluster headaches??   
    Because this subject appears in another post from today, I took the liberty of pasting the post above onto that thread, so that everything is in the same place.  The longer thread is here: https://clusterbusters.org/forums/topic/5829-does-nasal-spray-work-for-you/
  3. Like
    CHfather reacted to senya in Does nasal spray work for you?   
    Hello im a new member here.
    I have been suffering from CH for over 10 years. Usually get CH in spring and fall that lasts for about a month. 
    I usually stay away from any prescription meds due to their cost and because they just make next headache worse. 
    Recently I had a bad flu that triggered nightly clusters. Since I had runny nose I started using nasal spray to clear out congestion. So one night I got up with a really bad CH and went to clear my nose and used over the counter nasal spray. Approximately 15 minutes later headache was gone and I quickly fell asleep. I never had any medicine act so fast against CH. I have been using nasal spray to fight CH for past 2 weeks and it worked everytime. 
    Sparay that I use contains regular dose of Oxymetazoline. 
    So Im just curious if this method worked for someone or maybe it will help you too if you havent tried it yet. 
     
     
     
  4. Like
    CHfather reacted to FunTimes in Does nasal spray work for you?   
    I know that some of the prescriptions are manufactured in a nasal spray form and work much better and faster then in pill form and injections working the fastest but I have never heard of a over the counter drug in any form abort a cluster. What is the brand yo are using? Maybe someone else will have more information for you. 
  5. Like
    CHfather reacted to Matt19 in Does nasal spray work for you?   
    I have been researching oxymetazoline for some time now and have been using as a substitute for sumatriptan for nearly 3 years.
    I am 100% certain that this aborts my cluster headaches.
    Oxymetazoline as an α-adrenoceptor agonist, however it works as a full and potent agonist of serotonin receptor types 5-HT1A, 5-HT1B  AND 5-HT1D, and is a partial agonist of 5-HT1C.
    Sumatriptan works as an agonist of serotonin receptor types 5-HT1B and 5-HT1D. 
    It is believed that sumatriptan aborts cluster headaches because of cerebral vasoconstriction caused by its action as an agonist on serotonin receptor type 5-HT1D 
    So I firmly believe oxymetazoline aborts cluster headaches.
    So far you are my first confirmation.
    Spread the word
  6. Like
    CHfather reacted to Batch in 15 year remission?   
    Hey Steve,
    From my experience, it's best to jump on the oxygen at the first sign of an approaching CH.  The sooner the better.  The longer you wait, the higher the pain level and that ends up making your oxygen abort times longer.
    I'd also suggest you check out the anti-inflammatory regimen with 10,000 IU/day vitamin D3 or more along with the vitamin D3 cofactors.  You can download a PDF copy of this treatment protocol at the following vitaminDwiki link:
    http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    I suspect the return of your CH is due to a drop in your 25(OH)D3 serum concentration (vitamin D3 concentration).  Are you getting less direct sunlight than usual?  We've found that a vitamin D3 insufficiency/deficiency is very common among CHers.  The anti-inflammatory regimen can fix that deficiency and in the process, get you back CH pain free.
    Take care and please keep us posted.
    V/R, Batch
  7. Like
    CHfather reacted to kat_92 in Prescription Frustrations - long rant   
    It was a deposit of $150 and $78 for every new tank I get. They provided a regulator and a mask but I bought my own. The delivery is great. They will come the next day 
  8. Like
    CHfather reacted to Deadheadrob34 in Sumatriptan where has this been all my life   
    You discovered the magic of pharmaceutical companies! Triptans work for migraines, but still haven't talked to anyone where a triptan works over an extended time, say ten years. The one's I know who have taken them a long time are psych patients. They didn't start out as psych patients and every one had been on long term triptans. So, you can keep wondering if they work and risk being racked by a series of kip 9's or just use what is suggested by the longtime sufferers who have beaten the beast for up to 20 years. Psychedelics work, we've proved that, yet people are afraid that they'll get brain damage! Smashing your head causes brain damage, psychedelics are fun. Sub hallucinogenic doses may help for awhile, but I had to do a 1mg dose to stop them. I'm celebrating 20 years HA free. Even though I did psychedelics when young, I never detoxed  correctly and still took 14 years to get it right. It's an experiment, but has worked for me and at least 92 others. Sometimes you just have to help others. It's actually really cool to take an 18 yo who knows nothing but pain and cure him in 8 hrs. Watching a kid's parents who can't do anything about it is heartbreaking. It's imperative that we pay more attention to teens with clusters as they are more likely to commit suicide. Handing the now confident adult back to their parents is also cool. We have companies in California that will come to your house and dose you so there's no excuse to see a dr for poison. Cost me $10 for 20 years HA free. How much are triptans now? Not that cheap or effective. Peace 
  9. Like
    CHfather reacted to spiny in Prescription Frustrations - long rant   
    Jost, I sucked the cutting tip on our welding setup with a wet wash cloth over the tip the whole first cycle I knew about O2! Just dialed the regulator to the flow that I needed at the moment. Only turn on the O2 not the Acetyline. It worked great till I got my Clustermask and my own tanks in the house. If you rent a tank, then you have to have it filled by the company. If you buy it, you can have any welding O2 supplier fill it.
    The dog sure misses those trips since I got setup in the house!!  
  10. Like
    CHfather got a reaction from Jost in o2 noob help please   
    Review of what the others said and some additional thoughts here.
    Hyperventilating is actually good when you're trying to do it.  In general, you will get good results if you exhale deeply before your first inhale of O2 (having drank down an energy shot or some caffeine before you begin), then inhale as deep as you can, hold it for a few beats, and then fully exhale, forcefully, with a "crunch" if you can to get as much as possible out of your lungs.  You can stay on it as long as you need to, plus 5-10 minutes after the attack has been aborted to hold off future attacks).  You'll get the hang of it quickly, and develop your own approach.  Some people will turn down the flow rate and breathe more naturally in later stages.  When you feel better you can read more about hyperventilating here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/  
    Tips: Look down toward your feet as you do the O2.  This helps.  If you have a standard non-rebreather mask, there will probably be an open circle of holes on one side of it (usually, one side has a gasket and one is open). Put your thumb over that circle when you inhale, or cover it with tape.  You don't want any room air mixing with the O2 as you inhale.  For the same reason, make sure you hold the mask firmly to your face -- don't use the strap.
    The mask made for CH is very highly regarded:  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
    You only need a higher flow rate if you have to wait for the bag on your mask to refill while you are using the best breathing strategy.  If you can do what I said above and the bag is full after your full exhale, you're good.  Yes, you can buy higher-flow regs, but as Rod' said, different size tanks take different size regulators.  The two types are CGA870 for smaller medical tanks and CGA540 for larger medical tanks and all welding tanks.  If you go to amazon and type cga 870 into the search bar, you'll see what those look like, and can compare to what you have.  Check with us before you buy.
     
     
  11. Like
    CHfather got a reaction from jon019 in Prescription Frustrations - long rant   
    https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  12. Like
    CHfather reacted to jon019 in o2 noob help please   
    ..dang...I hate it when the beast finds our address again....
    ... don't get too hung up on the "right" technique...we all kinda figure out what works best for us...try different styles....
    ...in my case hyperventilation not usually possible and my best success was a slow in-out (hold in every few) with an attempt to clear my mind of EVERYTHING except "breath" (hard to do... GOOD distraction!)...and calmed me the f@#* down....which was near as critical as the O2...
    Best
    Jonathan
  13. Like
    CHfather reacted to jon019 in Prescription Frustrations - long rant   
    ...hi Jost...it ain't glib when we suggest/push/cajole/beg a fellow cluster head to try O2..tis the #1 primary MEDICALLY acknowledged abortive for a cluster hit. Has SAVED LIVES and sanity (like mine)and it's a crime when one of us runs into a med professional who can't or won't prescribe it...or ins that won't cover. A few yrs ago on another forum it would be referred to in almost every thread....it's that important. Some folks don't know about it...I always presume NOT until I know for sure. And I will continue to risk pissing someone off because I can STILL feel the tears from 35 yrs ago when I aborted a hit "like water down a drain"...and I KNEW I just got my life back.....YMMV... but it's damn important to try. I learned about it pre any forum...then the job was to find a doc who would work with me (critical)...and fights with 7 insurance companies. The alternative of untreated CH was sufficient motivation for the battle...
    Others can detail welding setups way better than I..but yur already 90% there ...and you are gonna be able just shake your head at the failings of some in the med/med insurance community...
    PFDAN
    Jonathan
  14. Like
    CHfather got a reaction from jon019 in Prescription Frustrations - long rant   
    https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
  15. Like
    CHfather reacted to Batch in Ubrelvy...What is it and has anyone tried it?   
    If used properly with hyperventilation, oxygen inhalation therapy is nearly as fast as subcutaneous triptan injections.  It has no adverse side effects and again using the procedure of hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed immediately by inhaling a lungful of 100% oxygen and holding it for 30 seconds then repeating this sequence until the CH pain is completely gone usually takes an average of seven cycles - 7 minutes consuming less than 30 liters of oxygen , ~5 cents worth of oxygen gas/abort.
  16. Like
    CHfather reacted to Rod H in o2 noob help please   
    1. Hyperventilating is good get as much pure o2 in your system as you can. You need a non rebreather mask. One with a bag and stay on the o2 for at least 5 min after the banging subsides. 2. Yes if your supplier doesn't give you one amazon sells em. Make sure the fittings match your tank. I don't know what tank you got so can't help with that yet.
  17. Like
    CHfather got a reaction from jon019 in New to this forum – Cast Iron until hit by CH   
    I'm sorry I don't have more to offer you. It sounds like you have been sensible about what you have chosen, given all the factors you have described.  I'm going to quibble with you about two things, if only for future reference in case the dike springs a leak.  If you do the D3 regimen while everything else you're doing to treat your CH is the same, and you feel that your situation has improved, you can at least tentatively attribute the improvement to the D3, and begin seeing what happens if you reduce some of the other meds.  It's not the best situation to be in to play with something that is working, but over the longer run it will be greatly beneficial to you if a more natural, less damaging approach such as D3 works as well as the pharmaceuticals you are using. (I do understand that the "long run" isn't very interesting when you're risking severe attacks right now, so I'm only offering this perspective.)  
    (It's a strange thing about CH. I was talking just the other day with a fellow who was in remission for a couple of years, which he attributed to the 1200mg of verapamil he was taking every day.  At some point, a doctor told him it was going to be very bad for him to keep taking that much verapamil, so he started to lower his doses.  As he lowered them, the attacks didn't come back.  He's been off all verapamil for several years now, and still hasn't had an attack (full disclosure: he does have shadows every day). I am not saying at all that anything like that could be the case for you. I am just saying how much we don't know about what is actually helping and what isn't.)
    Second, I have no desire to convince you to use any substances you don't want to use, but I don't think we've seen anyone here whose life has been taken over by psilocybin and other substances used to treat CH, in the way that addicts' lives can be taken over by "hard" drugs. If you were some day to try this, a substance like rivea corymbosa seeds can treat CH without even giving you any kind of "trip."  Since you live in a place where some recreational drugs are legal, you might have seen more "hard cases" associated with psilocybin than I imagine there are . . . and of course the leap of faith to stop the triptans and try "busting" would have to be enormous for you. For some, it has been a "leap of desperation" more than a "leap of faith," and I hope you don't ever get to that desperation point.
    (I guess this is a question regarding O2. I'm sure you have thought of this, but I just want to make sure it's said.  As a big strong guy, you might well have very large lung capacity.  If you are using a proper breathing technique, perhaps even hyperventilating, I can imagine that you sometimes have to wait for the bag on your mask to refill before you can take another full, deep breath.  Really, that is the standard for flow rate -- can you use the best possible breathing technique without having to slow down or modify that technique because there isn't enough flow to the bag. If this is an issue for you, then you would want a flow rate even higher than 25 lpm.  We have seen some highly fit people need flow rates of 40 and even higher to keep up with their lung capacity.  A demand valve system is particularly valuable in a situation like that.)
    My best wishes to you.  My father came to the US from the Netherlands when he was a boy, and Dutch, not English, was the language spoken in his home here in the US.  I'm sorry to say I never learned any, but I do still feel an affinity toward folks from my ancestral home.
  18. Thanks
    CHfather got a reaction from 20yearslater in Sumatriptan where has this been all my life   
    Splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/
    Bunch of things you might want to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    oxygen oxygen oxygen oxygen.  Can't stress that enough.
  19. Like
    CHfather got a reaction from jon019 in New to this forum – Cast Iron until hit by CH   
    As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true.  Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about.  Psilo will be an official "med" within a few years, you can bet on it.  The D3 regimen, which is supplements but not "meds,"  has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic.
    Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted.  As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer.  I think you might be in a  situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle.
    This also doesn't make sense, at least to my way of thinking.  Chronic is chronic.  If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). 
    Prednisolone is what prednisone is metabolized to by the liver.  The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense.
    It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack.  Many people use sugar-free versions of energy drinks with good effects.  But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.)
    I have to wonder whether your O2 system is optimized.  Do you have a flow rate of up to 25 litres per minute?  Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH).  Is it O2 from a cylinder or tank (not from a "concentrator")?  Are you breathing deep, holding, and then expelling all the air you can from your lungs?  Fully effective O2 is the key to better treatment of your condition, in my opinion.
    Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects.  You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you.  I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.
  20. Like
    CHfather reacted to Brain on fire in Taurine   
    Oxygen is an abortive, not a preventative. I understand using it while on the job could be problematic with your profession. If you are comfortable speaking to your employer about it, maybe that can be worked out. Just sending some random ideas because I don't like to see anyone in pain when they have the tools to stop it.
  21. Like
    CHfather reacted to Dallas Denny in New to the group   
    Agree with the minimalist approach @MRUPE!
    Although I highly recommend the D3 regimen solely bbased on the "anecdotal evidence" that I've witnessed as it was being documented over the years, I don't personally use it.....when I got here 10 years ago I committed to "busting" as a treatment and didn't want to "muddy the water" by adding the D3 and then not knowing for sure which strategy worked!!  When I got here I viewed clusters as a curse but thanks to this place it's become an annoying inconvenience!
    DD
  22. Like
    CHfather reacted to Brain on fire in New to the group   
    @Batch Exciting news. Who is doing the study?
  23. Like
    CHfather reacted to spiny in Taurine   
    I take just caffeine. Either in capsule form or V8 Energy. I have also used cold coffee prepped earlier for the occasion. They work for me. The energy drinks and shots make me feel sick to my stomach. They literally don't stay down. So, I was very happy to find that the V8 version does not upset my stomach. No taurine in them. So, for me, it does not matter that there is no taurine.
  24. Like
    CHfather got a reaction from Brain on fire in Taurine   
    When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows).  I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine.  So if by "just a taurine supplement" you mean taurine alone, without caffeine, I suspect -- but can't say for sure -- that it would be ineffective.  I know that some people have taken taurine pills and caffeine pills, but don't ask me why, or how helpful it was.
    (I'm guessing that the reason that the Red Bull doesn't make you shaky is that the 8 oz. version has roughly the same amount of caffeine as a cup of coffee, about 80mg. A 5-Hour Energy shot has 215mg of caffeine!)
  25. Like
    CHfather got a reaction from Brain on fire in Taurine   
    When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows).  I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine.  So if by "just a taurine supplement" you mean taurine alone, without caffeine, I suspect -- but can't say for sure -- that it would be ineffective.  I know that some people have taken taurine pills and caffeine pills, but don't ask me why, or how helpful it was.
    (I'm guessing that the reason that the Red Bull doesn't make you shaky is that the 8 oz. version has roughly the same amount of caffeine as a cup of coffee, about 80mg. A 5-Hour Energy shot has 215mg of caffeine!)
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