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dmlonghorn

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  1. Like
    dmlonghorn reacted to Into Light in Freud   
    bump
     
  2. Like
    dmlonghorn reacted to Freuds mom in Freud   
    Sorry if I didn’t reply to all the prayers & good wishes sent to Brian. He appreciates them and is making progress. He misses everyone and should be back real soon. 
  3. Like
    dmlonghorn reacted to Dana129 in Life Update   
    Thanks BOF, thinking about it gets me a little bit teary, I thank God every day this place exists, and that I was born in a time where cluster headache sufferers have the knowledge we have now, without that I’d never be at this point, realistically, to be blunt, I don’t think I would’ve lived past 30 with how clusters were affecting my life, then I found this place, I owe everything to this forum
  4. Like
    dmlonghorn reacted to Brain on fire in Quick update   
    Pulling for our much loved and missed Freud.
  5. Like
    dmlonghorn reacted to Freuds mom in Quick update   
    FYI I know many have been concerned about Freud.  He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes.       
    Best regards to a pain free future for all,
    Freuds mom 
  6. Like
    dmlonghorn reacted to VocTeacher in Thank You   
    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
  7. Haha
    dmlonghorn reacted to ex_spud in 2019 Conference how is/was it?   
    Thank you to all that made the conference happen, and all that attended.  It was my first one, but won't be my last.  So much great information that it can't all be consumed in one weekend.  To meet (in person) so many of the people that together pulled me from the abyss 3 years ago was overwhelming.  I've never choked back so many tears, time after time.  I do have one question regarding the venue, did everyone's reading room have the same deluxe lighting as mine did?
    Ed

  8. Like
    dmlonghorn got a reaction from CHfather 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!

  9. Like
    dmlonghorn got a reaction from kat_92 in The alcohol test   
    I tried and failed with white wine at the conference Friday night. I got hit and learned that my low level constant shadows are an indicator of still being in a cycle.
  10. Like
    dmlonghorn got a reaction from CHfather 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!

  11. Like
    dmlonghorn reacted to ThatHurtsMyHead in 2019 Conference how is/was it?   
    Home safe as well.  Loved seeing everyone, newcomers and old. :P)
    Love to all CH'ers!
    J
  12. Like
    dmlonghorn reacted to Into Light in 2019 Conference how is/was it?   
    A great big thank you you to everyone whose efforts brought this year’s conference into existence, and to all the attendees, whether I met you or not. Suffering from such a rare, isolated, and isolating affliction, it was heart lifting for me to see a tribe of us all together.
    I can’t thank all those of you who were fun to meet and those who were helpful...nonetheless, it was great to finally meet IRL among many others @Psiloscribe @Freud @dmlonghorn @Batch @Dallas Denny and our fabulous enlightened First Presenter.
     (I lust after the phone case.)
    love to all
    Into Light
     
  13. Like
    dmlonghorn 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
  14. Like
    dmlonghorn got a reaction from CHfather 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!

  15. Like
    dmlonghorn 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
     
     
  16. Like
    dmlonghorn got a reaction from CHfather 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!

  17. Like
    dmlonghorn got a reaction from kat_92 in The alcohol test   
    I tried and failed with white wine at the conference Friday night. I got hit and learned that my low level constant shadows are an indicator of still being in a cycle.
  18. Like
    dmlonghorn reacted to Dallas Denny in To all attending the 2019 Conference in Dallas   
    G'mornin ya'll!
    About to start loading up the car and get on the road....expect to get to Grapevine by mid morning!!  I went to a 3 day music festival with all Texas bands (ZZ Top was the headliner!) In Grapevine during the summer of '71 but that's another story entirely.....the parts of I can remember anyway...lmao!!
    Already several folks there and quite a few more getting in this morning!!
    Safe travels to all and see ya'll soon!!!!
    DD
  19. Like
    dmlonghorn 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. 
  20. Like
    dmlonghorn got a reaction from chauntemaria in To all attending the 2019 Conference in Dallas   
    Can't wait to meet y'all!!  
  21. Like
    dmlonghorn got a reaction from chauntemaria in To all attending the 2019 Conference in Dallas   
    Can't wait to meet y'all!!  
  22. Thanks
    dmlonghorn reacted to met la in Dramatic vit D3 megadose success stories at ch.com   
    some facts from wikipedia
    Light-exposed mushrooms may provide up to 100% of the recommended Daily Value of vitamin D.[4]
    Vitamin D also modulates neuromuscular function, reduces inflammation, and influences the action of many genes that regulate the proliferation, differentiation and apoptosis of cells
    Vitamin D is a group of fat-soluble secosteroids, the two major physiologically relevant forms of which are vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol).
    prevention of hypocalcemic tetany
    while sufficiency prevents rickets in children and osteomalacia in adults
    The usual cause of tetany is lack of calcium, but excess of phosphate (high phosphate-to-calcium ratio) can also trigger the spasms. Milk-and-alkali tetany is an example of this imbalance.
    Underfunction of the parathyroid gland can lead to tetany.
    Low levels of carbon dioxide cause tetany by altering the albumin binding of calcium such that the ionised (physiologically influencing) fraction of calcium is reduced; the most common reason for low carbon dioxide levels is hyperventilation.
    Low levels of magnesium can also lead to tetany symptoms.
    Rebirthing-Breathwork, purposeful rapid breathing for one - two hours at a time; first causing hyperventilation, can sometimes lead to tetany.
    Cow grazing on rapidly grown pasture with tetany of the neck suggesting Grass TetanyAn excess of potassium in grass hay or pasture can trigger winter tetany or grass tetany, respectively, in ruminants.
    Osteomalacia in children is known as rickets
    nerve disease
    The most common cause of the disease is a deficiency in vitamin D,
    some of this stuff you can find on migraine sites ,or here o2 magnesium rickets is said to be painfull
    steroids etc ,
  23. Thanks
    dmlonghorn reacted to Racer1_NC in To all attending the 2019 Conference in Dallas   
    Back when I was flying more, I would run in to the occasional TSA agent that would seemingly have no idea what my regulator was and I'd get pulled aside to "discuss" this mysterious item. During a thunderstorm ground stop in Charlotte I was making use of the extra time to smoke a cigarette (long since quit), I struck up a conversation with a member of the TSA and eventually the conversation turned towards my regulator. She told me that the reason I was getting checked so much was that the regulators are hard to ID in my bag when going through the x-ray machine and thus triggering a manual check. Her advice was to place the regulator in the tray beside my laptop or shoes and she could almost guarantee I'd have no issues going forward. She was spot on....never a minutes trouble since then. Of course YMMV.
    On a related note, if you are packing regulator(s) in checked bags, expected them to open the bag up and take a look. Just the way things are these days. I imagine they'll have a field day with the bag I'm packing with 6-8 different types of O2 equipment for my demo. No biggie......as long as it gets there.
  24. Like
    dmlonghorn 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.
  25. Like
    dmlonghorn 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
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