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Brain on fire

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  1. Like
    Brain on fire got a reaction from chauntemaria in To all attending the 2019 Conference in Dallas   
    Quick reminder, pleaae share on the forum so those who cannot attend can learn. Thanks in advance and have a wonderful conference!
  2. Like
    Brain on fire reacted to Ken’sHead in To all attending the 2019 Conference in Dallas   
    Thanks for all the information. I am excited about the conference but I’m going to be at the Hilton (looks about 5 minutes away). I’m wondering if the conference will still let me check out oxygen tanks or if I’d be better trying to make arrangements for Apria to deliver to my hotel? Can’t wait to meet everyone... I haven’t said that in years!!
  3. Like
    Brain on fire reacted to dmlonghorn in To all attending the 2019 Conference in Dallas   
    Can't wait to meet y'all!!  
  4. Like
    Brain on fire reacted to chauntemaria in To all attending the 2019 Conference in Dallas   
    Hi, everyone! I'm Chaunté! My husband Zach & I will be heading to Dallas from THE Buckeye State (OH-IO!) for our first Clusterbuster Conference in just a few days! Seemed like fate that we have close family who live in Dallas!
    Day 219 since the Beast decided to rear its UGLY head. It then provoked me to crawl up to my peacefully sleeping husband, I woke him up in hysterics and said " If I fall asleep now, I'm afraid I'll never wake up again. I think my brain is bleeding."  That first day was the 1 month anniversary of our marriage   I REALLY should have said " In HEALTH and sickness" instead of the traditional way!  (We're HARDLY traditional anyways!) 219 days of cluster headaches later................ we're headed to Dallas!!
    Everyone told me in the beginning, "Stay strong. This won't last forever." About 2 weeks in, somehow I just knew this was going to be a longer journey than what I was being told. 
    CH has (sadly) altered the person I was. It breaks my heart!
    However, I'm overwhelmed with emotion when I think about meeting all of you who experience the life-changing pain that I do.    And can my poor hubster meet just ONE friend who really understands the 50 Shades of Crazy I go through during an attack? Haha Honestly, I'm more than blessed. He's basically a saint!  
    Gahhhhh!!!!! I'm excited, nervous, overwhelmed, anxious, etc, to meet everyone!!! Is there an itinerary for the conference I can print out? 
    XO,
    Chaunté 
  5. Like
    Brain on fire 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. 
  6. Like
    Brain on fire got a reaction from chauntemaria in To all attending the 2019 Conference in Dallas   
    Quick reminder, pleaae share on the forum so those who cannot attend can learn. Thanks in advance and have a wonderful conference!
  7. Like
    Brain on fire got a reaction from Dana129 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
    Brain on fire got a reaction from Dana129 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.
  9. Like
    Brain on fire got a reaction from Tom S from Phila in To all attending the 2019 Conference in Dallas   
    Conference starts in less than 2 weeks! If you've never been & can go please do! 
  10. Like
    Brain on fire 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?
  11. Like
    Brain on fire 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!
  12. Like
    Brain on fire 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
  13. Like
    Brain on fire 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...
  14. Like
    Brain on fire reacted to Freud 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 =-)
  15. Thanks
    Brain on fire got a reaction from Darren in Surgery while taking Verapamil   
    Ouch! Best wishes for a speedy full recovery.
  16. Like
    Brain on fire reacted to CHfather 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
    Brain on fire got a reaction from jon019 in To all attending the 2019 Conference in Dallas   
    Hey @Ken'sHead don't forget to bring your regulator & mask.
  18. Like
    Brain on fire got a reaction from Dana129 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.
  19. Like
    Brain on fire got a reaction from spiny in Energy drinks   
    @FunTimes well said. Wecome Terri (and partner). I am a former sufferer of chronic cluster headaches, 3 every single night. I am a former sufferer because I found this site and using the methods here am now living pain free. Read, ask, encourage your partner to join us.
  20. Like
    Brain on fire got a reaction from Dana129 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.
  21. Like
    Brain on fire reacted to FunTimes in Energy drinks   
    Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks?  
    Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life. 
  22. Like
    Brain on fire got a reaction from A.Whittington in Medicare, Medicaid oxygen for us now   
    2020 is upon us, the Medicare Part D drug coverage gap did not go away as promised it increases again. Oxygen is still a NO for cluster headaches. Time for us & those who care to barrage our reps & CMS with calls, letters etc. 
  23. Like
    Brain on fire got a reaction from Freud in New to the group and suffering   
    Hi Willy, not much to add... This group changed my life. Welcome aboard.
  24. Like
    Brain on fire 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 
  25. Like
    Brain on fire got a reaction from Ali in D3 injection   
    Welcome Ali, good question. Replies from more knowledgeable members regarding D3 will come soon.
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