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CHfather

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  1. Thanks
    CHfather reacted to Dallas Denny in Happy 10th Birthday to our forum!!   
    I'm going to go ahead and post this a few days early as I may not have the time this weekend!
    This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!!
    We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!!
    I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!!
    DD
  2. Like
    CHfather got a reaction from jon019 in New poster - please help   
    Sounds like hemicrania continua to me.  https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page
  3. Like
    CHfather reacted to kat_92 in Post op. Wisdom teeth surgery   
    Hey all
    I just had my wisdom teeth surgery and it went great! 2 of my teeth were imacted and the doc said they just had to come out. He researched cluster headaches before hand and was able to do the surgery with no epinephrine! Just made me feel sedated and it was over in 30 min. Thanks to everyone who informed me about epinephrine via the forum. Much appreciated. Smoothie time! 
    Kat 
  4. Like
    CHfather got a reaction from Rod H in Script for oxygen   
    I should have mentioned this in my previous post.  Because most O2 suppliers are dealing with COPD-type ailments, they are used to supplying very small tanks (D size or E size) for portable use.  You need a way bigger tank for home -- an M tank or an H tank.  You also want at least one E tank for portability (car/work).  I'd be surprised if they don't also give you some kind of runaround about this. Tell them that they'll be bringing replacement tanks to your house every other day if you don't get at least one of the big tanks.  More than one is strongly preferred.
  5. Like
    CHfather got a reaction from Brain on fire in Script for oxygen   
    Great reply from Pebbles'.  The reason a concentrator is ineffective is that it makes O2 from room air, and it is not 100% pure O2 (there is still some room air mixed in).  Plus, the regulators on most concentrators don't go up to 15 lpm (liters per minute), which is where you want to be.  I'm telling you all this because it's likely that the O2 supplier has no experience providing O2 to someone with CH, and you might have to educate them a little.  I imagine 95% of their business is providing low-flow O2 from concentrators to people with COPD-type ailments.  For those people they typically also supply not a mask but nasal cannula.  You need a mask.
    For relief from CH, you want the purest O2 possible. That also means that when you get your mask, you might find that there is a circle of small open holes in it. Usually, one set of holes has a gasket behind it but one is completely open. Because you do not want to inhale any room air, you should cover the open holes when you inhale. You can use tape, or your thumb.  You also want to hold the mask firmly to your face so that you get a tight seal.  Eventually, or right away, you should get the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  6. Like
    CHfather reacted to Pebblesthecorgi in Script for oxygen   
    A concentrator doesn't really do the trick for aborting cluster headaches.  Your script needs to read    "100% oxygen  at 10-15 lpm via non rebreather mask  Use prn to abort cluster headaches for 10-20 minutes".  You need the O2 delivered via tanks, not a concentrator.  It would be nice if a concentrator worked but it  does not except in rare circumstances.
  7. Like
    CHfather reacted to Joshua in Emgality for episodic   
    It's working. No headaches since 9/4.
  8. Like
    CHfather reacted to Into Light in I’m new here. So happy to find this place!!   
    clusterbusters.org saved my life...and obviously so many others!
  9. Like
    CHfather reacted to Brain on fire in New here and super happy to be here   
    Welcome aboard @Marcelo_11. Sorry you need us, glad you found us.
  10. Like
    CHfather reacted to spiny in New here and super happy to be here   
    Welcome Marcelo! Very happy that you found us. There is a lot of info to read and absorb. Ask all the questions you want. There is a banner at the top of each section 'New Users - read here first' That will give a great start. 
    What meds are you taking and do you have O2 with a non-rebreather mask? High flow? That is the main game changer. And check up on the D3 Regimen. Cheap, easy, and all good for you vitamins. It can lower your pain levels and slow down the ramp up. 
    Living on two hours sleep for months will make you feel pretty rotten.   Posts are not 'boring' nor are there any stupid questions. 
    ATB!
  11. Like
    CHfather got a reaction from Brain on fire in New - Looking for Support   
    You can't get O2 from amazon.
    That's seems true.  So sorry.  Although at least you didn't get triptan pills.  The spray will probably help you.  (Others will answer your questions about that.)
    So tell him you got some oxygen from Amazon and it worked great and now you'd like that prescription.  Here is more or less what the prescription should say, since it's a good bet he has no idea how to write it: "Oxygen therapy for cluster headache: 15 liters per minute for 15 minutes with non-rebreather mask."
    Have you looked at the suggestions here for getting by without O2.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  12. Like
    CHfather got a reaction from Brain on fire in New - Looking for Support   
    You can't get O2 from amazon.
    That's seems true.  So sorry.  Although at least you didn't get triptan pills.  The spray will probably help you.  (Others will answer your questions about that.)
    So tell him you got some oxygen from Amazon and it worked great and now you'd like that prescription.  Here is more or less what the prescription should say, since it's a good bet he has no idea how to write it: "Oxygen therapy for cluster headache: 15 liters per minute for 15 minutes with non-rebreather mask."
    Have you looked at the suggestions here for getting by without O2.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  13. Like
    CHfather reacted to spiny in Question regarding flying during a cycle...   
    The TSA is very specific these days about what they are checking for -explosives! Not any meds or other stuff. 
    Once you are through the TSA checkpoint, you can buy drinks in the shops on the concourse that you are allowed to take on the plane. 
    I recently took on this hurdle after avoiding flying for 15 years. Got through just fine. Had shadows all one day after the flight, but that was it. It was over the Equinox which is my traditional start date, so, pretty scary!  However, I was not in cycle nor did it precipitate one.  
    Good luck! If you have a SPUT, take it as a preventative. It isn't explosive!  
  14. Like
    CHfather reacted to Brain on fire in New - Looking for Support   
    Apologies if I seemed harsh. I just get really pissed when I see no oxygen, a boatload of meds with each of their own added risks & little to no relief. A decent doc doesn't sit & watch ya suffer. No apology necessarily @jon019 your post re caffeine just popped up, good catch.
  15. Like
    CHfather reacted to jon019 in New - Looking for Support   
    Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it.
    If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville....
    It sounds like it gives moderately faster relief, which would be a godsend.
    .....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not..........
    I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. 
    ...a "typical" protocol would be  prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully)....
    .....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits...
    ...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent....
    ...you are in the right place to learn about busting.....
    ....the D3 regimen could make all of this moot...do it now...it's good for ya anyway....
    best
    jonathan
    sorry to step on Bof post...typed this before saw that.... totally agree........
  16. Like
    CHfather reacted to Racer1_NC in Let's get together   
    I don't have the info in front of me but we have a CH'r in Charlotte, NC that is putting together a weekend meet and great the weekend of 12-14/15. I'll see him this weekend and have him come here to post up the particulars.
  17. Like
    CHfather got a reaction from jon019 in I’m new here. So happy to find this place!!   
    https://clusterbusters.org/forums/topic/4568-triggers/
  18. Like
    CHfather reacted to jon019 in I’m new here. So happy to find this place!!   
    ....check your journal...you know, the one you keep on when, where, how hard, how long, activities, eats, stress, weather, etc..... soes you (and maybe a good doc) can figure this out (and then stop journaling)....cuz it sounds like maybe there's "something" happening one day but not the next (like weekend headaches from no caffeine)....we call 'em "triggers"...
    ....another thought......if yur fairly new to CH it could be your "pattern" has not settled in yet...for some it takes a while (1 yr for me)................
  19. Like
    CHfather got a reaction from jon019 in New poster - please help   
    Sounds like hemicrania continua to me.  https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page
  20. Haha
    CHfather got a reaction from spiny in Nausea with D3 Regimen & Cofactors   
    Yes, from here. And he responded by PM to me here.  I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts.
    (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin.  A very old-time TV reference.)
  21. Haha
    CHfather got a reaction from spiny in Nausea with D3 Regimen & Cofactors   
    Yes, from here. And he responded by PM to me here.  I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts.
    (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin.  A very old-time TV reference.)
  22. Haha
    CHfather got a reaction from spiny in Nausea with D3 Regimen & Cofactors   
    Yes, from here. And he responded by PM to me here.  I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts.
    (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin.  A very old-time TV reference.)
  23. Like
    CHfather got a reaction from spiny in Nausea with D3 Regimen & Cofactors   
    Send him a PM.  Click on the envelope icon at the top right of any page, and type Batch into the To line.  If he doesn't respond here, he will surely get back to you.  
    The pinned post is outdated, and now even the link to more recent information is out of date.  This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  24. Like
    CHfather reacted to GuaymasJim in Chronic Cluster a Year OR Longer?   
    I really hate to be the bearer of bad news, but my first CCH struck on Jan. 11, 1970. My last one was at 4am this morning. I experience as few as 1 per day and as many as 8 (aka daisy chain or bone crusher) with 2 being about average. I have never experienced a remission for more than three weeks-and very seldom that long. Some are much worse than others (there is never a good one), but they have been with me for just short of 50 years (I'm 72 yo). I have used most of the tricks memorialized here with various degrees of success as well as endured all of the misdiagnosis, misconceptions, inappropriate medications, horrible side effects, suspicions of malingering/exaggeration, procedures, experiments, studies, heartbreaks, and disappointments which unfortunately are also memorialized on these pages.  I have been on the receiving end of unbelievable help and compassion from Drs. Kudrow, Diamond (RIP), Goadsby, Green, Cohen, Butler, and a host of others. I have also been subjected to the most egregious and reprehensible mistreatment imaginable at the hands of the most morally challenged as*holes masquerading as pseudo "medical professionals" that the VHA has to offer. Most importantly though, I am still alive and have had a satisfying life-quite different from what I was planning on Jan. 10, 1970 1LT USMC-but satisfying none the less. Since all of my medical care has been provided by military/VA, I actually have all of those years documented. Imitrex twice daily (approximately $500,000+) since it was approved saved my life, but ultimately caused two MIs on consecutive days. Silver lining: discovered asymptomatic CAD and got stents in time. Now its oxygen at 16 mL and opioids (Don't let anyone tell you that opioids don't have a legitimate place in the treatment CH-used properly they most certainly do!!!
    Moral of the story: We clusterheads are all different while at the same time we are are the same-special.  We have a wealth of knowledge and experience which we are obviously quite willing to share, discuss, and even argue about.
    Wish you great success.
  25. Like
    CHfather got a reaction from Racer1_NC in Risk / Dangers of Oxygen?   
    It's not uncommon that a PA is more helpful than the doc.  This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035  It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better.  All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1).  A commonly used app is UpToDate. You can ask the PA to look up CH.  An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask."  There are abbreviations in there when it's formally written, but that's the content.
    You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too).
    So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania.  You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them.  As BOF says, oxygen is generally not effective against hemicranias.  There is, however, a pharma drug, Indomethacin, that is effective.  Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment.  (Indo is very hard on the gut, for most people.)
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