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CHfather

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  1. Like
    CHfather reacted to LKD06 in No medication   
    They are these little mini oxygen things that are made for hikers. They are semi effective, but after reading what everyone wrote about the welding o2 or going to a medical supply, I am going to go that route. I didnt know about these things because anytime I have asked for o2 from a doctor they have not allowed me to get it. So I thought those mini oxygen tanks were my only option.
  2. Like
    CHfather got a reaction from jon019 in No medication   
    I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me.  To answer the fundamental question, my daughter has been through many years of cycles with no medications at all.  She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen.  A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused.  She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine.  (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.)
    To endure CH without oxygen seems crazy to me.  If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen.   To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me.  What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  
  3. Like
    CHfather got a reaction from jon019 in No medication   
    I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me.  To answer the fundamental question, my daughter has been through many years of cycles with no medications at all.  She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen.  A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused.  She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine.  (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.)
    To endure CH without oxygen seems crazy to me.  If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen.   To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me.  What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  
  4. Like
    CHfather reacted to Dallas Denny in 2019 Conference how is/was it?   
    Quick update before I pass out!!  Great turnout with many new faces!!  Had an awesome time at the Presidents reception!
    I spoke to one of the clusterbusters board of directors (and official conference photographer) this evening and she will submit all of her photos to our Website person so she can make them available to the forum!!
    And, the film crew isn't coming til tomorrow so they'll actually be filming one of the grow demos that will be included in an upcoming clusterbusters documentary!!
    Tim made it already and 2 other folks gave up on getting out of the airport, took an uber to greyhound and are on a bus headed this way!
    And had the pleasure of meeting Freud and FunTimes......but theres severals that I haven't met yet although I know they're here!  Looks like we'll easily top 200 attendees....don't think it will break the record but it's a long way from the 40ish bunch of us in 2010!!
    G'nite ya'll
  5. Like
    CHfather reacted to dmlonghorn in 2019 Conference how is/was it?   
    Not many people understand us, but when you're emersed in an environment where so many people "get it" - it's a truly special experience. 
    It's like my family grew exponentially overnight.
    I can't wait to see everyone again in 2020.
    Thank you so much!

  6. Like
    CHfather reacted to Dallas Denny in 2019 Conference how is/was it?   
    Home safe!!  Another phenomenal conference, we are so blessed by Bob, Eileen and and the many volunteers who tireless efforts give our tribe the opportunity to gather like this every year!! 
    It was so very cool to meet sooo many 1st timers who are relatively new comers in this community!.
    Its amazing how much this thing has grown since my first in Portland 2009!  The agenda has become so full of speakers that we need 1 more conference day so it's not quite as busy and we have more time to socialize!
    I'll post later about the highlights but for now I'm about to go lay on the bed and inspect the back of my eyelids for a couple hours!!
    DD
  7. Like
    CHfather reacted to Txfire in 2019 Conference how is/was it?   
    This was my first year. 21 years I’ve felt alone in this battle. This year reached one of the lowest points and decided I needed to go. Left with a renewed hope and lots of information. Above all though,  after 21 yrs... not alone in this anymore. I can’t put into words the freedom that comes with that. Thank you to all who spent countless hours teaching me, listening to me,  and genuinely showing concern.   I’m sure to be back next year in Chicago
    Ben
     
     
  8. Like
    CHfather reacted to spiny in No medication   
    The scan does not need to be done when you are in cycle. It is looking for other brain abnormalities. One and done unless something else happens.
    Yes. I have. Several times in the 'old days'. My hits were milder and shorter then. And then once with a 6 month cycle where I thought I was going to die. I didn't die, the cycle ended, and I found a Neuro. He helped as much as he was able to with the limited knowledge he acquired in school and practice. Then I found this site and became a person again. 
  9. Like
    CHfather reacted to Joshua in Emgality for episodic   
    Hello everyone, I thought I'd throw my .02 cents in re: Emgality. I've been episodic since I've been 18 years old, I'm 45 now.
    The episodic cluster dose as noted above is 3 injections monthly until cycle ends. Yesterday I took my second round of 3. My cycle started mid summer in earnest and I was up to 5 cluster headaches a day. Verapamil and the usual prevents prevents weren't working, and although my D3 level was normal, the regimen wasn't helping this time around (it had in the past). 
    So I started Emgality on 8/15 and my 5 a day went down to about 2 a day, then skipped days, and as of today I've been about 7 days PF.
    So, Emgality YAY! - or maybe not? The question I"m asking myself is whether this is due to the drug or the seasonal  change towards Autumn. The PF days started just as the weather started to get cool where I am. Either way, I'm happy to not be getting any more attacks, and I took another monthly dose yesterday just for insurance.
    If I remain PF, I may see what happens mid-October and see if I get get off meds.
    This site and CH.com have been lifesavers for me in some pretty dark times, thanks to everyone who posts here.
    Joshua
  10. Like
    CHfather reacted to Freud in Quick update   
    Hi all, I have some great news to report!  I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment...
    I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays...  10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone!  If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). 
     
    BBL with more info.
    looking forward to seeing y’all in Dallas. 
  11. Like
    CHfather got a reaction from spiny in Energy drinks   
    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her!  She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it.  The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else.  It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through.  For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. 
    Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack.  I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them.  I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there. 
     
  12. Like
    CHfather reacted to Pebblesthecorgi in Do Cluster cause Physical Damage?   
    Clusters do not cause any known physical damage.  Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations.  Mental health challenges can cause legitimate physical problems.  The other issue becomes imaginary thinking.  We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc.  its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  13. Like
    CHfather reacted to Freud in Emgality for episodic   
    Um, 
    He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a  longer than 2 years and said “Oh man, you’re still new at this.”  He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. 
    He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait   my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). 
    He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later...  especially on the plane. But my friend who came with me told him  “he’s tough as nails and wouldn’t have a problem. I would get there fine.”  I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive...  it’s not for everyone and not too many people have had 25% burns...  I just have to maintain some kind of life...  I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry...  have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. 
     
    Think thats basically it...
    i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it...
     
    fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!”  I just hung up   I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails...
     
    sorry to hijack this thread but I don’t want to make a post titled my appointment w dr...  just seems strange to me
  14. Like
    CHfather got a reaction from Freud in Emgality for episodic   
    Thanks, Freud!  I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage.
    Fingers and toes crossed here that the D regimen is doing some magic for you.
    Anything else to report about your appointment with McGeeney?
  15. Like
    CHfather reacted to Freud in Emgality for episodic   
    So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines!  He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru!  I never tried to fill it. I have started the process to get it...  let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work!  I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140!
  16. Like
    CHfather got a reaction from spiny in Energy drinks   
    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her!  She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it.  The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else.  It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through.  For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. 
    Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack.  I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them.  I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there. 
     
  17. Like
    CHfather got a reaction from spiny in Energy drinks   
    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her!  She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it.  The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else.  It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through.  For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. 
    Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack.  I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them.  I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there. 
     
  18. Like
    CHfather got a reaction from kat_92 in Melatonin and clusters   
    Agree with F'T'--it probably isn't worth it.  But a few thoughts.  You don't say how much you were taking.  In the studies of melatonin for CH, dosages of 5mg were sometimes effective for treatment, and the treatment effects typically only showed up after 3-5 days.  So you might consider trying a lower dose, and maybe taking it an hour or two before bedtime.  Melatonin levels are typically low in people with CH, particularly nighttime levels during a cycle--but it also appears that they might be generally low in people with CH, even out of cycle--and melatonin is an important thing for regulating the hypothalamus.  Since you mention looking into indomethacin in case you have another kind of TAC (very good idea, in my opinion), I'll just also mention that because melatonin has a very similar structure to indomethacin and fewer side effects (for most people), it has been tried as an alternative treatment for hemicrania continua.  There was some success there, in doses as low as 3 mg, but overall many people with HC didn't respond to it.  Just sayin' you might want to give a lower dose a try (depending on where you started), but I can see why you wouldn't want to.  (In addition to all this, there's the question of the type of melatonin you're using. In straight pill form, it has very low bioavailability, so even higher doses have less impact than when it's taken under the tongue, or in chewable form, or as a spray.)   
  19. Like
    CHfather reacted to Rod H in New, English and Confused .   
    Sorry about your situation. When your cycle ends keep getting your monthly refills. Stock pile so you are ready for the next episode. Keep reading and ask away. This place has helped me more then my good Dr.s have.
  20. Like
    CHfather reacted to FunTimes in New, English and Confused .   
    you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. 
    Welcome to the site you will be happy you found it.  
  21. Like
    CHfather reacted to jon019 in New, English and Confused .   
    Welcome TEG, glad ya found us,
    …..yeah...OXYGEN, D3 and perhaps busting.....your goal is to have the suma on hand for the RARE, if any, breakthroughs..... because right now it sounds like way too much of a med that can feel miraculous but has some nasty side effects and can potentiate  rebound hits...
    ...had the same problem thru 7 different insurance companies  (O2 too)...one being BCBS...the 12/mo they are allowing is pretty standard...best I ever did was 18/mo....there are several strategies that worked for me...in the end, ALWAYS got both....(if Medicare, forget the O2 being covered, do self pay or welding O2)...
    ...starts with an advocate Dr (s)...mine were with a headache clinic used to dealing with insurance droids...your doc has gotta be on board. You need a letter of "medical necessity" stating what your diagnosis is (codes important) because you and your doc BOTH know you have CH.. and insurance companies "act" or ARE ignorant of CH and will give you the typical baloney of denial since "we don't cover these amounts for migraine patients. No shit! ....but YOU.DON'T.HAVE.MIGRAINE! Next, his/her PRESCRIBED treatment. Hopefully your doc is as pissed as he/she should be that some paper pusher is questioning their professional medical opinion/competence...and making medical decisions w/o having examined you (aka practicing medicine w/o a license). 
    ...my opinion, constantly reinforced over the years....health ins companies routinely deny claims out of hand...they COUNT on a certain percentage just to give up...DON'T! Treat this like a game you are gonna win. No one likes hassles with insurance.... but it's nowhere near as soul crushing as riding out hits "naked". 
    ...keep a record of every communication with names, dates, and times...be prepared to quote their own words back at them...especially the stupid and wrong...
    ...it would be especially helpful (if you get your ins through an employer)....to get HR on your side...better yet, request HR to put you in touch with the broker who sold the company the health insurance policy. This person is incredibly important since THEY are the customer of the ins company and more likely to get some action... you are just an annoyance...
    ….one strategy my doc employed was to prescribe 2 DIFFERENT triptans at the same time...since one ins Co wouldn't give me enough Imitrex,  she wrote another for Zomig NS (5 mg)...might even have been BCBS...they didn't even blink, approved immediately...tho the 2 scripts were same cost as ONE script of the Imi I needed. Side benefit of that: discovered Zomig worked at least as well, with fewer side effects and longer effective action. IMPORTANT NOTE: never mix triptans...always give at least 24 hrs between different types....
    ….Imitrex is sometimes available in vial form (ask your pharmacist or check online)...where you draw up the med and inject yourself (I used diabetic needles)...allowed me to get 15 aborts (2 mg ea) out of one script and avoid the hammer of 4-6 mg in the statdoses (which can be dissembled so you can use less...like FunTimes said)...
    Best
    Jonathan
     
     
  22. Like
    CHfather reacted to kat_92 in New, English and Confused .   
    Hey there!
    i am new to CH as well and to cluster busters. I’ve found that the people on this forum are super helpful and comforting to newbies like us. Unfortunately, the insurance situation in this country is atrocious. There really isn’t anything you can do about it. Even if the doctor, who has experience and went to school prescribed something they can deny it if they want. I’m sure some of the more experienced members will be chiming in soon regarding their oxygen set ups etc. I’ve been relying solely on the vitamin d regimen. There is a lot of informative information on that thread regarding vitamin d and reduction in clusters. If you go to the first page of general board there is a vitamin d thread. I’d purchase the vitamins as soon as possible and get started. Best of luck
    kat 
  23. Like
    CHfather reacted to Freud in Emgality for episodic   
    And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month...  I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study...
  24. Like
    CHfather reacted to Dan32 in Periodic Cluster changing to continuous?   
    Thanks Batch, Brain On Fire and Pebbles.

    Ordering my D3 supplies, feeling positive about what's ahead and looking forward to being involved in this community. Underestimated how validating it has been to see others talk about their experiences and treatments. Feel like it's helped me be able to properly see this thing in the light for the first time.
  25. Like
    CHfather reacted to Dallas Denny in New to the group and suffering   
    Welcome to the community Willy!!  Sorry you had the need to join us!
    Good to see that you have O2!!
    I'd suggest that you clue your doc in on the sumatriptin (imitrex).......for the vast majority of clusterheads the pills just don't work fast enough.....the imitrex nasal sprays work a bit better, but if you have to resort to the use of trex, the best option by far is injections.
    The best thing you can do in my opinion is read up on the anti inflammatory vitamin D3 regimen in our files section......you can start on it immediately once you have acquired all of the co factors but you will need to have some bloodwork done to establish your baseline levels.......we've watched this regimen work in folks life with ch for closing in on 10 years.....works well for about 75 to 80% of folks to either reduce the frequency and intensity of their hits or become painfree!!  The originator of the regimen, Batch, is active on the forum so ask any questions you might have and someone will have an answer!
    The last option is busting and you'll also find extensive info on that in the clusterbusters files or the share your busting stories section of the forum.
    Dallas Denny 
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