Leaderboard

Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.

I've been able to get tremendous help and support from the people on this forum. Thank you. Please know that for the rest of my life, I'll be praying earnestly for everyone to be healthy and pain free. And for there to be a cure. Season's Greeting to all, Jimmy-

Freud, Fair question and thanks for the kind words. I'm a 74 year old retired Navy Fighter Pilot. I was flying Navy fighters like the F9-F8 Cougar and F-8 Crusader, a.k.a., Mig Master before they started the first Top Gun class... I've a degree in Chemistry and at one point, was considering a career in medicine... I got a ride in a Navy trainer aircraft (T-34) my Junior year at the U of W, Seattle and that sealed the deal... The thought of flying Navy fighters appeared to be be a lot more fun than another 6 years of school so I joined the Navy to fly in 1965... I'm also a long time CHer (first CH attack in 1994), chronic since 2004. I've over 3000 hours flying Navy fighters and all of that flight time was spent breathing 100% oxygen from takeoff to landing (usually aboard an aircraft carrier). I can assure you, I was sucking down 100% oxygen at flow rates that support hyperventilation during high G-Force dog fights and combat maneuvering... like getting shot at by bad guy SAMs and AAA. I'm a patent holder for the demand valve method of rapid CH aborts method of therapy. I also have 15 years training in aviation physiology with most of that training in oxygen breathing systems. I'm a member of the American Academy of Neurology as a cluster headache researcher and I've had the opportunity to meet with some of the top neurologists in the world experienced in treating patients suffering from cluster and migraine headache. Bottom line... I'm here to help CHers avoid the terrible pain we all know so well by providing information outreach on safe and effective methods of controlling CH (oxygen therapy with hyperventilation as a safe and effective CH abortive and vitamin D3 therapy as a safe and effective CH preventative). I started doing this in 2006. You can find my web page at VitaminDWiki at the following link: http://is.gd/clustervitd 'Hope this answers your question. Take care, V/R, Batch

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

Just realized that the forums 9th Birthday slipped by me last week!! The board went live October 27th of 2009 with just a handful of active members the first few months!! What a long way we've come since those early days! So, a belated Happy Birthday to the Clusterbusters forum and a big Thank you to BobW and DJ for giving us this space! Dallas Denny

Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.

Good morning everyone, had a good visit with GP yesterday. (Never had luck with neurologists). I have prescription for O2 in hand! She says if it isn't everything they need to fill the scrip, we'll keep working til we get it right. Can't ask for anymore than that! Not in a cluster cycle at the moment, but could be at anytime. Trying to stay ahead of the pain! I have swore off prednisone, and am looking for something to add to my ammo. Cannot tell each of you how very much I appreciate your help...this site is truly a life saver! Thanks for your quick responses! BTW...I will be purchasing the ClusterO2 Kit from this site as soon as I have that lovely tank in hand! Have a great day...Rose

ALL the above ^^^^^^^^^^…..and I'm not sure that private insurance "has" to cover it... but they WILL.... provided ya play the game! Of the 8 insurance companies over my career, 7 of them refused initial request for O2 as CH treatment. Totally bizarre when the alternative triptans are so damn expensive (tho ALSO limited by them). Just one more entity that doesn't understand CH and doesn't seem to care either. Sermon over... OXYGEN saved my sanity, if not my life....I seethe when I see refusals and the completely inexplicable federal veto. I got it EVERY one of those 7 times...because I HAD to...…….. If they won't: Appeal immediately by writing and phone...keep copies of ALL communication and persons talked to. Do not accept the bullshit line that "we don't accept oxygen as treatment for CH." It's in the lit as the referenced by CHF and THMH....and that would mean they are practicing medicine without a license (i.e. the droid in the basement with the green eye shade and the mission to deny everything). Call 'em on that one...anything in writing or verbally from an identified rep is golden. Be sure you have a prescription...and send 'em copies of either or both of the lit above. I REALLY hope you have an advocate Doctor....who cares and is willing to fight the insurance company....and hopefully pissed at incompetence. You'll need a "letter of necessity" describing his/her diagnosis and treatment plan (O2 of course)....and woe be the UNLICENSED insurance jockey who disputes that. (one of my fav memories is the blistering letter my neuro sent...it really worked). If you are working.... seek help from the HR person to go to bat for you. Better yet...besides that person, find out who is the broker that sold your company the policy. Request HR put you in contact....THAT person is really considered the insurance company customer...they'd prefer you go away...but they WILL listen to this person. Meet and greet and give 'em all the above..... Game on...don't get mad...get busy. It got to be sorta fun after a while...and a great distraction...stress being a prevent for me...hoping this will save you a little.... Best Jon

Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive. This is all oh so true. In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient. Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH. This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so. Maybe you want to call your insurance co in advance to get an idea. If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to. Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air. I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones. There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit And you might want to get higher-flow regulators. We can discuss that when the time comes. Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.

So I've been headache free since I started this drug five months ago. If you can try it, I say go for it. Best of luck. Lenny

I would take the os script and fill that first, you can then get your own regulator from amazon to fit the tanks you get, 2 is better then nothing. I would then start working on the o2 supplier, I was given 4 e tanks when I was first set up with my O2 and after being very creative with the delivery driver and calling into the company for refills I am now up over 12 E tanks, 2 m60 tanks and 2 M tanks. The cost stays the same for monthly refills and it takes a little time to build up your stash but it is worth a try. Drivers dont care what you have and most of the time keep a few extra tanks on the truck. the youngsters on the other end of the phone taking orders dont care how many tanks you have and only type into the system what you order and most companys do not have the best inventory tracking software so they do not remember what you have. It may not be the most ethical thing to do but then again limiting you to only 2 tanks of something like oxygen is not the most ethical thing they can do either.

Small suggestion here. You currently have a non-rebreather mask with a bag that does not support your breathing. You can take an unscented fresh garbage bag and use that instead of that little thing giving you a hard time. Tie up the open end tightly. As in air won't leak tight. Now, cut a hole in a corner where you are going to either push the stub of the previous bag or the bag with the bottom cut out. Remove or open the bottom of the bag on your mask and insert what is still attached into the garbage bag. Tape that up really well. Now you have a really big bag to hold your O2! Then you will have the pleasure of plenty of O2 for your next breath waiting for you - not you waiting for it. Not the best rig, but beats out running your O2. Turn on your O2 and grab a few slurps of that caffeine while it gets up to speed. Less than a minute and you are on it. That should get you through until your cluster mask gets there. Personally, if I can't get the high flow needed, it is a waste of money to use it. Takes a looong time to get relief and the relief is not lasting at all. Like executing a bat turn in the living room and heading back to the office cause it is back not lasting. When doing your post hit breathing, dial the O2 back to match your breathing. You should be breathing at a normal rate at that time, so you won't likely need 15 or 25lpm. And no grease or oil or anything on the threads of anything where you are pumping O2. THMH gave you a great primer on that one. One more item. Try holding a full inhale of O2 for 10-20 seconds. It really does help. Then exhale with that crunch. Works great. As your pain levels drop, you can relax a bit on your breathing technique. By the end, you should be breathing normally.

Word of caution. If you're going to try to use a SCUBA 2nd stage regulator. First make sure it's rated for 100% O2 by the manufacturer. Most are not and are manufactured with rubber O rings and pressure valves that are not O2 compatible. They are also mostly lubricated with hydrocarbons that can spontaneously combust if exposed to 100% O2. Once you verify that a manufacturer's regulator is O2 ready you should make sure it's O2 "Clean". Most any SCUBA shop can O2 clean a regulator for you for a few bucks. I normally dive mixed gases and O2 clean gear is a must to prevent your gear from catching fire or malfunctioning. Hydrocarbons can spontaneously combust in pressurized pure oxygen. I don't mean to scare anyone, but using pressurized O2 should only be done with O2 certified and cleaned equipment. J

I think you are having slapbacks due to not fully aborting the attack. I had the same experience when I started using oxygen. I would get hit at night, 10 to 15 min on O2, and back to bed. Repeat every 90 minutes all night. This is not my usual pattern, I get hit at night, but usually only once or twice a night. This went on for a few weeks, and I thought maybe O2 didn't work for me. I was even starting to think O2 was making things worse. I was experiencing slapbacks because I hadn't fully aborted the hit, even though I was pain free after a few minutes on O2. I bought the special Cluster mask, which was well worth the $25. I increased my flow rate from 15 to 25 LPM and increased the time to 15-20 minutes and then the 5-10 minute cool down (10-15lpm) at the end. I am not an expert by any means, but I would recommend increasing the flow rate. Sometimes I get worried about my oxygen supply and cut back the flow rate to conserve, and I regret it every time. I can abort with 15lpm, but I sometimes end up back on the O2. I have a gigantic H tank at home (the O2 delivery guy hates me) and an E tank for the car. I never play with the low flow rates anymore (always 25LPM) on the E tank because I am at work and have a fear of running out of O2. I might use more O2 the first time, but I only need one trip to the parking lot. I understand your desire to conserve oxygen. My insurance won't cover it, and it can get expensive. You might want to look into welding oxygen. It is the same quality as medical oxygen, but comes in a different tank and is usually cheaper. I have used welding oxygen in the past, and would not hesitate to use it again. Also, that big H tank of medical oxygen actually comes in a welding tank that is painted green. Another idea I could suggest would be supplementing the O2 with an energy drink containing caffeine and taurine. This has helped me abort daytime attacks. However, I haven't tried it at night. I have read from others on this board that they can drink an energy drink during a night hit and still go back to sleep. Above all, I would recommend not giving up on oxygen. Increase the flow rate and try to find an alternate (cheaper) supply. You have proven you can get pain relief from oxygen, now you just have to dial it in to prevent the slapbacks. You should get bigger tanks, too. Those E tanks are awesome for the car or travel, but the big boys are best for the house. My oxygen delivery company actually charges me the same price for the H tank as the E tank (which makes no sense to me, but works out in my favor). Congratulations on kicking out the triptans. I did that a few months ago and have felt much better. I can't prove it yet, but I think it has reduced the number of attacks I get. Also, congrats on kicking the topamax, the worst drug I have ever taken. I'm glad it didn't help me, because the side effects were insane. It would have been a hard choice if it actually helped.

...un piccolo mala testa (small bad head)...I would suspect every clusterhead has a slightly different definition...mine would be a hit (yes, it's STILL a hit) less than 2 on a scale of 10...am totally functional but know it's there and MAY lead to somethin' worse. what some clusterheads call a "shadow" would be called a bad headache by civilians....but then we are jaded....

Jimmy, Sadly CH doesn't go away. It can go into remission, but I've not heard of a single person that it went away forever. CH can go into remission for several years at a time on it's own. I myself had a two year remission for no reason at all. Others might take one of the busting substances and get years between CH episodes, due to preventative dosing. I know of two people that had approx 10 year remissions while taking a recreational substance (unknowingly preventative dosing). While others may take the ultimate route out. I've read over and over of doctors telling patients that they'll eventually outgrow their CH. That in most people, it goes away as we get older. That's pretty much been proven as Horse $#%&. People stop going to the doc because their was nothing the doc ever did to help them. That's why the doctors think it goes away.. IT does't go away, the patients do. (Sorry don't mean to be a downer. There's only a handful of doctors that I like Most others are useless or worse, counter productive to helping those of us with CH. The good news is, busting really works and has saved many, many lives (mine included). PFW, J

Great advice from F'T' and Freud. OXYGEN can't be overemphasized. It's the real lifesaver. If you can't get a prescription, you can do as many do and create your own system using welding oxygen. For most people with CH who have done the vitamin D3 regimen, it has been effective at stopping cycles, reducing severity of attacks, and preventing future cycles (though not right away -- it can take a few weeks, although for a small number of people it's faster). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Often, a good doctor (and I would say emphatically that you do not have one, given what was prescribed to you) might use a steroid taper (prednisone, usually). In some cases, it will stop a cycle, but in most cases it gives pain relief for a few days before the cycle comes back as you are tapering off the steroid. You can use those few days to jump start the D3 regimen, or to use the commonly prescribed preventive, verapamil, which takes time to get into your system enough to be effective. Regarding "busting" with shrooms or seeds (or L S D), read the numbered files in the ClusterBuster Files section of the board. You might find other things that will help you as you read the other files in that section. The "triggers" document, for example, has been helpful to some people. Also, because CH is often flared up by allergies, even ones you don't know you have, consider taking Benadryl 4 times a day, 25 mg 3 times, and then 50 mg at night. It's a lot, but it can help. Some people find that melatonin at night, starting at about 9mg and working up as needed, helps. Melatonin is an important chemical (hormone??) that is low in people with CH. NOT recommended to take both Benadryl and melatonin at night.

Tips on helping abort the cluster. First thing you will want to start working on today is getting a script from your doctor for high flow oxygen at 15-25lps with a non rebreather mask. things you can "do at home" are down a 5hr energy drink at the first sign of the pain. drink ice water with a straw pointed at the roof of your mouth on the cluster side to kind of freeze it out. put your feet in hot water, as hot as you can take it. down strong coffee, this is kind of like the 5hr energy drink thing. chew on fresh ginger. pushups, jumping jacks or some other kind of exercise sometimes helps. just a quick few things I hear of that have helped people in the past. I have tried just about all and sometimes they help and some times they do not. Every attack is different and you will need to try a few things for some attacks before something helps it. But the one thing that works best for me is the pure oxygen. between that and 5hr energy drinks I do not use triptans (Imitrex) but maybe once a month if things get real bad. Also look into getting Imitrex shots, they will abort in about 5 minutes. the pills take much longer. Take your time and read up on this site and a tun of help will come your way.

Every time your dose is altered by 80mg to one way or the other you must get a heart film. I would not recommend verapamil to anyone in a world where we have anti-inflammatory regimen (vitamin D), herbal protocol (liquorice root) and busting (MM, lsd, lsa). It's not used for it's regular uses (heart/blood pressure) not that much anymore because there are better/safer options . IMO 480mg per day is just about maximum for any kind of safe use for majority and even on those doses there usually eventually arises either a heart problem or problem with the response. I've been well over a thousand myself. Verapamil will have an impact for the rest of your life, no matter the dose. I agree with CHfather, do the D3 regimen instead. Good luck !

Busting is a topic I don't know enough about, as I am trying to learn that myself. However, I have a few tricks I have learned: OXYGEN is your best friend. There is no actual difference between welding oxygen and medical oxygen (only the cleanliness of the tank). Oxygen is your first and best line of defense. I have found that oxygen will abort an attack almost as fast as an imitrex injection without any of the side effects. You need, at a minimum, a flow rate of15LPM through a non-rebreather mask for 15min. When you go to your doctor, make sure s/he specifies the flow rate and non-rebreather mask (the one with the bag on it). Much more about oxygen can be found here: https://ashleyhattle.com/how-to-get-and-use-oxygen-for-clusterheadaches/ (This is a link to the website of a Clusterbusters board member who literally wrote the book on Cluster headaches) It wouldn't hurt to get the book either, I found it informative and encouraging. Also, there is a lot of information on this board about oxygen. Everyone does it a little differently, but most people have great success with it. A key point is that if it does not work for you at 15 LPM, increase the flow rate and try again. For me, 15LPM will work, but I do better with 25LPM. ENERGY DRINKS are helpful at holding off an attack and are also used in conjunction with oxygen to abort attacks. The combination of taurine and caffeine is apparently what does the trick. I used to slug a cup of coffee to hold off an attack, but the caffeine/taurine combo works better. Look into the D3 Regimen. A cluster headache sufferer put this anti-inflammatory regimen together and cured his headaches. Essentially, it is a bunch of vitamins in conjunction with large doses of vitamin D3. This forum has a lot of information about the D3 regimen, and Batch (the creator of the regimen) is a very regular contributor to this board and is always willing to personally help. Many people have a reduction in frequency and severity of their CH using the D3 regimen. I have those morning hits sometimes too. It sucks to wake up, go through hell, pop an injection, and then have to go about your day. Oxygen has made that bearable. Trex messes with me, makes me drowsy and worthless. Oxygen does none of this. I have also been able to drastically cut back the shadows with oxygen as well. I have recently stopped taking imitrex, and rely solely on O2 and Energy Drinks for aborts. (I still stockpile the injections for a rainy day, however). Also, there is some evidence that imitrex can make your cycles longer. When things were really bad I would take imitrex tablets as a preventative (I could prevent an attack for 12 hours with this method). It sounds like you may be experiencing something similar. Most importantly though, we have all been there. You don't have to put how you feel into words. Those feelings of despair are (in a way) a symptom of this condition. You are also suffering from PTSD (we all are). That helpless feeling you get when you got yet another attack is part of it and there are a lot of people on this board who know exactly what you are going through, and are willing to help. This simple fact did not keep a cycle at bay, or help abort any attack. But it gave me some hope that things would get better in the future. Congratulations on the baby, you have a whole new world to look forward to.

Hi A-Z, If you consider triptans for your shadows (especially if they are long-lasting) you can have a look at the ones with a long half-life which are a better fit for this type of pain. The two in that category I am thinking of are Frovatriptan and Naratriptan. They also tend to have less side effects than the fast-acting ones. Just pay attention not to mix different triptans together. All the best ! siegfried

Regarding lithium and MM, it says this in the ClusterBuster Files (in "Playing Well Together"): >>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.<< Not everything in these older document is completely reliable, but I do believe that some others have commented over the years that this information should be kept in mind. I'm sure that Batch will comment on your primary question, about D3.

Yo AZ Yes, my CH is diagnosed/confirmed. My doctor prescribed me Diclofenac Sodium / Misoprostol along with Zolmitriptan when there is full CH attack, took both at once. It worked a little but i had no other options. Now i take Diclofenac Sodium / Misoprostol for headaches apart from CH. Well...that's GOOD...ya know what you are dealing with. Why no OXYGEN is a puzzlement tho! At least a try. If Doc says no...or DOESN'T know...get another Doc. It is the first line, first choice, most medically accepted (for decades now) abortive that works near miracles for many. Easy to use, relatively cheap, fast, NO SIDE EFFECTS. Without O2 I would have feared for my sanity and perhaps my life. The first time you use and feel the hit drain away like water you will know... and regret any delay... See these links: http://www.clusterheadaches.com/O2/index.html https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ Re Zolmitriptin. Is it a tablet or the nasal spray? I had wonderful abortive results with the spray (5 mg)....5-8 min effectiveness....18 hr "free period"..99% effective for break throughs after O2, energy drinks, sometimes verapamil failed. Very expensive...just like Sumatriptan. I mighta paid ANYTHING at times tho...……… Me too mostly depressed. As i felt positive to SSRIs, took them for a few months 2 years back. Seems a clinically-depressed case But a physician Doc not a psychiatrist prescribed me SSRIs. SSRIs are good to certain point after that no! their side effects i didn’t like. Now thinking to take Magic Mushrooms to fix my mood and to stop Shadows. Interesting enough there are several antidepressants that have been used for preventive CH treatment. Not much success from what I gather. Amitriptyline was the one I tried...totally ineffective and life altering side effects (getting out of bed was my major accomplishment for the day) YMMV...…. Re MM...you are in EXACTLY the right place...check out the "Files" section. I have no personal experience with that method..... I was introduced to Verapamil after my last CH pain, however, i took them as a try and a preventive med. But very bad constipation problem and leave them. So, i didn’t know much about Verapamil effects What dosage? Did you do a prednisone or methylprednisolone taper first (to break the cycle while the verapamil kicks in...10-14 days). The reported "sweet spot' for clusterheads is 480 mg/dy in divided doses. I used (depending on cycle) 480-1040 mg dy of the immediate release type (the extended release version works for some but fewer than immediate release). Also known as "concrete dust" it definitely can cause constipation. I always made sure to drink LOTS of water and increase fiber intake (Metamucil works too) and did not have any problems...but we're all different... On Verapamil packet it is written Calcium-Channel blocker and Beef contains high amount of Calcium, it can be any connection between CH and Calcium?? Beef is actually relatively low in calcium (tho high in protein) compared to many foods like dairy, some leafy green veggies, soy products, nuts, seeds, beans, canned bone in fish, fortified cereals and juices, et al….see: https://www.healthline.com/nutrition/15-calcium-rich-foods Verapamil does not play well with calcium….should separate intake by several hours… No i have not tested myself for Lyme disease. Might want to think about that if you have other symptoms besides CH trigger after beef intake…or even just that as inflammation from an allergic reaction is DEFINITELY a Ch trigger… Diclofenac Sodium / Misoprostol narrows nerves. In my expirence blood thinner things like Garlic make me down: mood and body. Taking blood thinner myself for another purpose….have noticed no effect on CH or mood….would be interested in others experience. There have been reports of Coumadin being effective for CH for some…so go figure Want to know more from you good-people The D3 info from Batch above is PRICELESS….I’d go for it…. Boring life i am living. With CH…aint nothing boring… Best Jon

Jon, Thank you for the kind words. I've been in touch with the Principal Investigator for the vitamin D3 migraine prophylaxis RCT. He and his team are working the final manuscript for publication. Once that's out of the way and they can find the funding, a follow-on RCT using a vitamin D3 physiological dose of 10,000 IU/day is on their list of things to do. There's a good reason why the mAb RCTs can't achieve better efficacy. When you consider the site of action are neurons within the brain that produce calcitonin gene-related peptide (CGRP) and mechanism of action they espouse is neutralization of CGRP, the first step in these two processes is getting the mAb into the brain. That's a very real problem Big Pharma has yet to solve. The maximum opening size through the tightly packed endothelial cells forming the blood brain barrier (BBB) is a molecular mass of 400 Da (Daltons). The mAbs have a molecular mass of 150 kDa (150,000 Da)... 375 times larger than openings through the BBB. If the mAbs cannot pass through the BBB to enter neurons throughout the brain, neutralizing CGRP within these neurons is a non-starter. My guess is the reduction in migraine days made possible with mAbs is due to reducing serum CGRP. For reference, vitamin D3 has a molecular mass of 385 Da so passes readily through the BBB and into neurons where it's hydroxylated by enzymes to 1,25(OH)2D3, the genetically active vitamin D3 metabolite. It in turn attaches to Vitamin D Receptors (VDR) at the genetic layer initiating the genetic expression that down-regulates CGRP expression... and in the process, prevents our CH and MH. Better living through chemistry... and molecular biology... That's my SWAG... and I'll stick with it until a better mechanism of action is found. Take care, V/R, Batch

The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air? Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket. Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.