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Freud

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  1. Like
    Freud got a reaction from Boatman 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. 
  2. Like
    Freud got a reaction from Boatman 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. 
  3. Like
    Freud got a reaction from Boatman 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. 
  4. Like
    Freud got a reaction from Boatman 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. 
  5. Like
    Freud got a reaction from Boatman 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. 
  6. Like
    Freud got a reaction from Boatman 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. 
  7. Like
    Freud reacted to Brain on fire in Need to vent about something I saw on reddit   
    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum!
    Edited to add: If they ever return, I know how to stop them.
  8. Like
    Freud 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.
  9. Like
    Freud 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
    Freud got a reaction from Brain on fire 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
  11. Like
    Freud reacted to razorPP in B1 ORAL HIGH-DOSE THIAMINE   
    Yes it appears that the B1 is no longer suppressing my cch, still finding pain levels are lower with D3. I’m not sure why B 1 stopped working. There is nothing I can think of that has changed in myself or my environment. I am going to take a break from B1 for 4 weeks and let it leave my system and try again, this time frame is just easier for me to remember, no science behind it. CH has a way of being a challenge and seems to always change and morph around what ever I throw at it. Peace and my you find pain free days. 
  12. Like
    Freud reacted to razorPP in B1 ORAL HIGH-DOSE THIAMINE   
    Batch thank you, 20 K of d3 seems to be my daily dose needed, still taking b1.  The last few weeks my cch has been suppressed. Enjoying life and learning to smile again, I couldn’t have done it without this place. Hope your days are pain free, peace. 
  13. Thanks
    Freud reacted to razorPP in B1 ORAL HIGH-DOSE THIAMINE   
    something new for me is a deep sleep, also changing my dose to one dose of B1 400mg am and see 
    someone on facebook emailed  Dr. Constantini and asked these questions:
    Q1- Was your healed patient taking any other vitamine supplement1  (Omega3, D1, Magnesium and adult multi-vitamin, etc.)?
    A1: The patient didn't take any supplement

    Q2- Are you aware of cases where the B1 treatment isn’t working? 
    A2: We only have three cases in treatment and they are responding. We also have 10 cases of chronic migraine and episodic migraine and all responded wonderfully to our therapy, with the complete remission of the symptoms.

    Q3- Do you have another future experiment planned with B1 and CH? 
    A3: We will continue treating the cases which we visit in the next future

    Q4: For episodics like me, do you think I should start in between sycles or just wait for a cycle to start?
    A4: For episodics like yours, I'd suggest you to take the therapy when you have the first attack, with 500 mg in an only administration in the morning.

    Q5 Since vitamine B6 is linked to the Dopaminergic Systems functions, was vitamine B6 examined by your research? Was vitamine B12 examined as well? 
    A5 We didn't examine B6 nor B12.

    Q6: Would you recommand taking 3 doses during the day of B1 or one a day? 
    A6: We recommend to take the total dose all together in the morning at breakfast. Bruce He sent me these as well as all cases where Dr. Constantini treated diseases with huge intakes of B1 to treat MS, Fybromialgia and Parkinson; all so called auto-immune diseases..
  14. Like
    Freud got a reaction from Brain on fire 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
  15. Like
    Freud got a reaction from CHfather 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
    Freud got a reaction from Brain on fire 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
  17. Like
    Freud reacted to CHfather 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?
  18. Like
    Freud got a reaction from CHfather 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!
  19. Like
    Freud got a reaction from CHfather 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...
  20. Like
    Freud got a reaction from Brain on fire in Females and O2   
    Bravo @Batch, Its like explaining a cardiopulmonary bypass strategy...  enjoyed the physiology.  I have a real hard time hyperventilating. And for me when I force myself to do it. Usually an hour after my normal routine of using a regular old non rebreather mask and I’m at the I’ll try anything point. I break out the opti with the mouth piece and do the whole routine. Each method and no response. Well no more than if I go back and just breath the 25LPM gas. Now I know what you’re going to say next.  You waited too long. But I have done it as a first line for over a month and I get the same results. So I stay comfortable, breath at a fast rate w my plane Jane mask and if the O2 is going to work I abort in 2-3 min stay on for 10-15. Unless I fall asleep and sleep through my timer. Lol did that last night. Ran through a fresh M tank. Fortunately I don’t have COPD w CO2 retention...  But 99% of my nocturnal CH alarm clock attacks (every 45-60min) respond quickly and abort. Few of the nocturnal attacks that wake me up already at a kip 10 and no 1-3min ramp up take 30-45min to break if they break. But the longer I’ve been CCH I wake up before the CH starts!  And I’m like hmm I don’t have to pee WTF did I wake up for. Then I try to go back to sleep and then the ramp up starts. It’s real strange. So when I’m alert enough to know what’s going on. If I wake up suddenly I just hit the O2 for 10 min and go back to sleep. 
     
    I know sience as well well as friends w CH say hyperventilating is the way to go as well as the beautiful opti mask is superior (I love the way it feels on my face but they purposely don’t want you to fall asleep w the mask on and I get it. I want to lie back and breath or pace and breath. Not hold a mask or mouth piece. Every bit of comfort helps when I’m mid hit which is most of the day. 
     
    TLDR: Thanks for the post Batch, I support and suggest all of your suggestions to other CHers. But it doesn’t make a damn of a difference to me sadly. I’m just not responding normally to any of the treatments but they still help a ton  
    I guess the next step for me is a 30-40Lpm reg...Apria is going to love that  lol
     
    Unrelated note  our greek friend’s GF is pain free after starting the D program and Benadryl. I asked her to fill out the survey and post about it...  she is CCH too =-)
  21. Like
    Freud reacted to jon019 in To all attending the 2019 Conference in Dallas   
    Yo Ken...for future reference....I regularly travelled while in cycle and either had O2 delivered to hotel or picked up from shop myself...CA, NV, OK...same price same great service as home. I used Lincare…. but noted from website that Apria has same/similar program. They ask for 30 day notice...
    Best
    Jonathan 
  22. Like
    Freud reacted to jon019 in To all attending the 2019 Conference in Dallas   
    ...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray.  The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.
  23. Like
    Freud got a reaction from CHfather 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. Thanks
    Freud reacted to Batch in Females and O2   
    Kat,
    Gender has little to do with the efficacy of oxygen therapy in aborting CH.  If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone.  In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender.
    What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive.  The other half involves blowing off CO2 faster than the body generates it through normal metabolism  by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis.  In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis.  I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates.
    Respiratory alkalosis does several things that help abort CH.  The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH.  What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen.  This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. 
    This super-oxygenated blood flow and low arterial pH does two things.    It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration.  These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate.  They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict.  All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels.  While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect.
    I can hear the wheels turning...  WTF are Forced Vital Capacity Tidal Volumes?  The answer is simple once you understand the terms.  Tidal Volume = The volume of air (or oxygen) inhaled and exhaled.  The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out.  Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it.  Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content.  If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound.  Try it now and hold the squeeze until your breath makes a wheezing sound.  Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration."
    Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes.  We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008.  Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same.  Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks.  This came to a total of 366 aborts with this method of oxygen therapy.  364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic.  The average abort time for these 364 aborts was 7 minutes.

    One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute.  As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute.   We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH.  This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine.
    For reference, I hold a patent on the oxygen demand valve method of aborting CH.  I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight.
    Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes  are equally effective in aborting CH.
    Hope this helps.
    Take care,
    V/R, Batch
  25. Thanks
    Freud reacted to Pebblesthecorgi in Females and O2   
    Sounds like made up information to me.  Most of studies with O2 have men but that's because of diagnosis bias.  Physiologically male and female brains function the same.  Its the manifestations of that physiology that creates the "Mars/Venus" effect (tongue in cheek, wink).   Even if "60%" was true its still worth trying properly.  Ask you doctor "If I have cancer and had a 60 % chance of responding to therapy would you offer it?"  O2 is inexpensive and effective for aborting clusters and every cluster head deserves a chance to try it.
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