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CHfather

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  1. Like
    CHfather reacted to Into Light in Freud   
    yes
    what they said
  2. Like
    CHfather reacted to jon019 in You Know the Ironic Thing About Cluster Headaches?   
    WOW...exactly!!!....used to almost wish for a cycle when I had to write for work....lots of us get the euphoria....but this I've never seen before... wish it was harnessable w/o the CH.....
  3. Like
    CHfather reacted to FunTimes in New to Clusters   
    Welcome to the site!
    You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. 
    on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. 
    Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you. 
  4. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    If your face is small, you might require a pediatric size mask.  Or it's possible that it's the other way around, and you received pediatric masks instead of adult ones.  The ClusterO2 Kit that you will be ordering can be used as a breathing tube with no mask.  Preferences about mask/tube vary. 
  5. Like
    CHfather reacted to mit12 in Success with different breathing techniques   
    I start out at 15ml/s and huff fast and hard for a few minutes than turn down to 8ml/s and take a deep breath and hold it until the bag fills and breath out and take another deep breath until I get relief. 
  6. Like
    CHfather reacted to Pebblesthecorgi in Boost Oxygen on Shark Tank   
    There is not enough O2 either by concentration or volume to be very helpful.  I tried it a couple of times to see if it would work for me.  I respond to O2 in traditional delivery for clusters very well.  The O2 in boost was not noticeable and did not respond better than hyperventilation alone and was inferior (my individual impression) to a 5 hour energy.  Its marketed overtly for altitude issues and covertly for hangover treatment.  It might be good for one of the two.  I suspect any effect would be short lived and largely placebo.
  7. Like
    CHfather reacted to jon019 in Boost Oxygen on Shark Tank   
    ...just do the math....one hit at a typical 10-15 LPM for 10-15 min would be 16 cans (plus no mask and <100% O2)....at $15 ea that's ca $240....makes the drive down to the welding shop with a box of donuts for the boys a worthwhile trip...
     

  8. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.
    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 
  9. Like
    CHfather got a reaction from kat_92 in Success with different breathing techniques   
    Be sure the open holes in the front of your mask are covered when you inhale.  With your thumb or with tape.  Be sure you have a firm fit to your face. Use your hand to hold it on, not the strap. You don't want any room air getting mixed with the pure O2.
    I'm going to venture that the first strategy you should try is inhale the O2 as deep as you can, hold it in for a couple of seconds, and exhale forcefully, almost to the extent that you are doing a crunch with your abdomen to get it all out.  The purpose is to clear regular air out as much as possible and get as much pure O2 as possible into contact with you lungs.  Also, remember that most people get quicker results when they get some caffeine down fast at the beginning of using the O2.  You can start with strong coffee, or you can go straight to something like 5-Hour Energy, which has more caffeine and has other stuff in it that might help.  As far as the breathing strategy you ultimately select, you can go either harder at the beginning (more forceful hyperventilation) or you can try starting out less dramatically.  Once you can tell that the O2 is taking effect, you might dial it all down a bit.  Remember to stay on the O2 for 5-10 minutes after your attack is aborted. Doing that seems to help hold off future attacks. 
  10. Like
    CHfather reacted to VocTeacher in Thank You   
    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
  11. Like
    CHfather reacted to kat_92 in My first O2 tank!!   
    Hey all
    I’m so excited to update that I FINALLY got an oxygen tank! What a mission. The delivery guy is super nice and said most of his deliveries are for people with clusters. He also gave me 4 non rebreather masks for free  Hope everyone is well today 
    Kat 
  12. Like
    CHfather reacted to Racer1_NC in My first O2 tank!!   
    Good deal!
    Those masks he gave you while better than nothing, are not the best for our use. Order the Cluster O2 kit if you haven't already. http://www.clusterheadaches.com/ccp8/
  13. Like
    CHfather reacted to FunTimes in Question about oxygen!! South Florida area!   
    That is good that you now have a company that will supply you with oxygen.  Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers.  With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. 
    Bottom line is get to know your delivery person and figure out how to work the system to your advantage.  You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance. 
  14. Thanks
    CHfather got a reaction from kat_92 in Question about oxygen!! South Florida area!   
    kat', closer to four hours, I would think.  An M tank holds about 3500 liters.  3500/15 = ~230 minutes of O2.  But some people do find that when the tank gets lower in O2, the abort is less effective.  I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2.
    You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
  15. Thanks
    CHfather got a reaction from kat_92 in Question about oxygen!! South Florida area!   
    kat', closer to four hours, I would think.  An M tank holds about 3500 liters.  3500/15 = ~230 minutes of O2.  But some people do find that when the tank gets lower in O2, the abort is less effective.  I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2.
    You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
  16. Like
    CHfather reacted to Transcona gal in Question about oxygen!! South Florida area!   
    Hang in there @kat_92!  I could not access medical oxygen s went the welder's route last week through praxair in my neighborhood.  To be honest, when i had all the gear  i wasn't really sure what i was doing with it all. But with a wrench and special adapter that fits the regulator and hose, I'm all set now.  With the exception of a brutal CH last night, i believe it is def helping.  
  17. Like
    CHfather got a reaction from kat_92 in Question about oxygen!! South Florida area!   
    You have to go to a medical oxygen supplier, which is not the same thing as a medical supply store.  Type "oxygen suppliers" and the place where you live into google.  Or look for Lincare, Praxair, Airgas, Linde, Apria . . . those are some common ones.  It's pretty common for doctors to fax an O2 prescription directly to a supplier. Does s/he not know any?  You could call neurologists, or hospitals, or assisted living places or nursing homes -- they all would have relationships with O2 suppliers.
    But if your doctor wrote your prescription for 5lpm, you are probably not going to get the tanks you need, because that is easily satisfied by a concentrator, which is pretty unsatisfactory for CH. 
    The national suppliers I listed above all have "industrial gas" divisions that will sell you welding O2.  Or google welding supplies and the place where you live.
    I think I have already linked you to these, but in case . . . .
    https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
    https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
     
     
  18. Like
    CHfather reacted to jon019 in Question about oxygen!! South Florida area!   
    ..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this."
    ...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"...
    "If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? "
    ...YUP...nobody cares what flow you actually use...regulators go from 0 up...
    "I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" 
    ...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up...
    ….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV...
    Best
    Jonathan
    .
     
  19. Like
    CHfather reacted to Dana129 in Life Update   
    Another update: still pain free, attended a birthday party and got absolutely shit faced with no sign of a shadow, life is great
  20. Like
    CHfather reacted to Brain on fire in Insurance won’t approve my oxygen tank...sigh feeling helpless   
    After I received my 25lpm regulator I got a dolly that carries 2 E tanks, connected the 15lpm regulator to 1 & the 25lpm regulator to the 2nd. If I ran 1 dry the 2nd was ready, though at a lower flow. Beat blindly fumbling around mid-hit (kip 9 zoom to kip 10)/mid-slapback (pains in the arse too) trying to connect the 25lpm.
  21. Like
    CHfather reacted to CHChris in Insurance won’t approve my oxygen tank...sigh feeling helpless   
    Don't give up on welding O2 just yet Kat.  Many of the welding supply shops in my area will also deliver tanks.  They do charge a fee, but I crunched the numbers one time and it was still cheaper than paying for medical O2 out of pocket.  You could call around to your local welding supply stores and see if they do deliver.  That could be a good way to save the time of visiting the ones that don't deliver.
    Another thought would be to get a smaller tank and carry it around using a dolly.  125 cubic foot tanks can be fairly heavy, but with a dolly it is a breeze to move them.  That would be roughly the size of a medical M tank. 
     
  22. Like
    CHfather reacted to jon019 in Insurance won’t approve my oxygen tank...sigh feeling helpless   
    ...sorry if I missed this.... have you tried asking an O2 shop to accept self pay? Did that for many yrs....unknown if they are still willing, I'd try multiple outlets...this is dated but I paid $10/e-tank to start and eventually $14...
  23. Like
    CHfather got a reaction from kat_92 in Healthonelabs.com   
    Thank you for posting this.  It looks like the D test is $60.  This one is a bit less -- $47.  https://www.lifeextension.com/vitamins-supplements/itemlc081950/vitamin-d-25-hydroxy-blood-test
    (I didn't check to see whether there are additional charges at one or the other that change the actual cost.)
  24. Like
    CHfather reacted to spiny in 2019 Conference how is/was it?   
    It was my first conference. Amazing!!!! It was a joy to meet so many members after all these years. Having the opportunity to talk to new people was terrific. It was super special to be able to talk to them in person and perhaps provide a bit of new information.  
    It was a lot of information to absorb over two days! 
    I was more than shocked to have some people come up to me and say " I know you spiny!!!!'  Yes, I finally came off my mountain! Shadowed a bit for a day, but otherwise, I had no issues with a cycle starting there or when I got home. 
    Many thanks to Bob for making this happen! And thanks for pushing me to go!  
  25. Like
    CHfather reacted to CHChris in No medication   
    If you can afford it, you should definitely try to get oxygen.  I recommend either welding oxygen or aviator oxygen.  The benefit of aviator is that it is "breathing grade" and does not require a prescription.  I only add this because I have gotten some flack from my welding supply store for the amount of O2 I use.  They know I am not doing that much cutting and they question me.  I made this worse by trying to fill my medical tanks as well (because I had a prescription but O2 is not covered by my  insurance), and they will refuse to sell to me if they know I am breathing it. So I get aviator oxygen and they don't complain.  It is the same price as welding O2 and probably a quarter the cost of medical oxygen if you pay out of pocket.  Keep in mind that welding oxygen is just as good as "breathing grade" oxygen, and these companies only refuse the sale due to liability concerns.
    Clovis also makes a good point.  Many doctors (mine included) will not prescribe oxygen when they know insurance won't cover it.  Don't let them do that.  Paying for it is your responsibility and never let a doctor shut down an avenue of treatment for this condition because insurance won't cover it. (Especially when it is the most effective treatment available.)
    Regarding the medications: I am chronic and all of the stuff I was prescribed for a long time had no helpful effects.  In that regard I would say I had "no medication."  I did, however, have imitrex tablets, which could still be considered "no medication" as they absolutely suck for clusters.
    The advice I was given from a fellow clusterhead regarding prednisone was that if it stops working you need a higher dose.  For example, if it stopped working at 30mg, then you would go back up to 50mg and taper back down.  Of course, prednisone is only a transitional therapy until some other medication can take effect.  I have been warned by many clusterheads not to take a lot of prednisone because of the cumulative side effects.   But for a while, until it stopped working, prednisone was a blessing.  Now I know them as "the devil's tic-tacs."
    @81007 For me, oxygen works almost as fast as an imitrex injection, which is way faster than the pills. But waiting until a full blown attack to take a slow acting drug seems like prolonging the agony to me. If you get shadows before your full blown attack, my recommendation would be to take the pill at the onset and not wait, but injections are better.  I only use imitrex as a last resort (aka when oxygen is not available).
     
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