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  1. Like
    dmlonghorn reacted to jon019 in Anxious Supporter (Husband) Here - Are my views on CH Skewed?   
    Hiya Mj...feels weird to quote myself...but I'd just say (almost) the same thing:
    Still true 15 yrs later....tho I'd say "manageable" is the proper word. The attitude part was learned the hard way.....and it was for survival. YMMV on how ya get there. I had a life, loved ones, a job, a career...and things to frigging do....and this CH shit was getting in the damn way and threatening to take all of that away. "Not gun happen...read my lips".  I realized it wasn't gonna kill me, why should it disable me?   My belief it starts with the attitude...and living between the hits....a plan comes with research and advises the right tools (one of 'em being right here)………...
  2. Like
    dmlonghorn reacted to MoxieGirl in Doctor vs Patient   
    This popped up on my Facebook feed today, and I thought it apt.
  3. Thanks
    dmlonghorn reacted to FunTimes in Electronic Aspirin   
    I did this as a clinical trial in my area. I lasted just about 2 years and had it removed. It may have helped with a few clusters but I do not think my placement was correct so it had poor connectivity. Now I am left with numbness feeling in my upper lip, roof of my mouth and nostril on that side of my face. Lost a lot of my sense of smell and taste.
    Would I try it again? Probably if I was in the same place mentally I was when I signed up for the study just before I found this site. 
    BOF.. No barcode but you do get a little card to get you through a meddle detector 
  4. Thanks
    dmlonghorn reacted to FunTimes in Traveling (driving) with an Oxygen Cylinder   
    I keep a m60 in my car a lot of the time. I built a little box that it sits in with 2 E tanks. You can just strap them to a seat back to make sure they do not fall over and break the regulator. 
  5. Thanks
    dmlonghorn reacted to Batch in Traveling (driving) with an Oxygen Cylinder   
    Hey DM,
    In the days before I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 (2005-2010), I drove to work and back home with my M60 on the floor behind the drivers seat daily driving 25 miles up 395 to the beltway to McLean, VA .

    I configured my M60 with an InGage® 0-60 liter/min regulator from FlotecO2 and oxygen demand valve.  If I got hit while driving, I pulled over to use it.  That made for some interesting discussions with the State Patrol when they pulled in behind me to see why I was stopped along the freeway...  If your CH are hitting at night, strap the M60 with the luggage.
    Take care,
    V/R, Batch
  6. Thanks
    dmlonghorn reacted to Dallas Denny in Traveling (driving) with an Oxygen Cylinder   
    Hey dm
    If it's a large cylinder with cga-540 connection, you need to remove the regulator and transport with the neck cap on.  I've carried my large weld ox tank in strapped down in the bed of my pickup many times......I could get pulled over, hook up the regulator, and be huffing in short order!
  7. Thanks
    dmlonghorn reacted to registrateyourjourney in RegisterYourJourney app Published   
    Yeah, I made it. I've finaly uploaded my app idea to the Play Store and sended out emails to all the Android users that signed in to become a tester of the app. This means we are finally in the testingfase of the RegisterYourJourney app.
    If testing goes well, I will publish the app as soon as possible for everybody to use. It will be free fo download.
    A small explication of why I've made an app for us.
    All the years that I already have cluster attacks, I've been looking for an simple way to register my attacks and everything I do to feel better. This is what I see as my personal journey.
    Excel sheets didn't work for me because its not an easy way, most apps only gave me the option to register attacks and medicine use, but we do so much more than that. A lot of apps also ask to many things when you want to register an attack. This is really nice to know but if my attacks starts, it hits me like lightning and I don't think about filling out a form with questions. 
    The information collected in these apps are mostly stored in an agenda, nice, but it gives me no clear view on what I've done because I need to open day by day to find out.
    What does my app different for us
    RegistrateYourJourney gives the option to register whatever you want. If you would like to register only medicine use and attacks than you only add "Cluster headache" and "Your Medicines" as buttons to the app and you can push the buttons to register these items.
    Benefit now is that you can also register your vitamin D, magnesium or magic mushroom use. Or you can register the use of coffee if you are interesed in knowing if the use of coffee has any influence on your attacks.
    I've made (for the moment) 7 groups of buttons: Symptoms, Medicine, Alternative Medicine,Therapies, Vitamins and minerals, food and drinks and activity.
    In every group are some items listed, but it is still a small collection. If you need an extra button like a medicine that isn't listed or another therapy, just go to the website and request a new button and I will add it as soon as possible.
    Why would this app help us?
    I strongly believe that if we can register all we individual think is important, we will find more structure in our attacks. Maeby we can find out why Vit D seems to work for one and not for the other as a lot of things we try. Meaby we can try things together and registrate this also together, so we can do some investigation ourselves. Meaby we can combine our data with the weather report or allergy reports so we can see if there is a correlation between attacks and weather or pollen. Maeby later we can combine it with data collected in a health watch, but thats all future.
    The other side is that I think that pushing a button is easier than filling in reports. The easier it is to register, the more data we can collect. That has been the base of my idea.
    Hope you will all enjoy the app. It will be free to download from the Play Store for Android users. iTunes/Apple users have to wait a little bit more. The iOS project is finished but the publication time for iOS is way longer.
    If you want to become a tester, for this version and future ones, please send me an email and I will add you as soon as possible. Please mention the type of phone, operating system, the email address you use for the Play Store or iTunes and you name so I can add you correctly to the list. (Without the correct email address I can't add you to the whitelist for testers)
    Hope that I can contribute to our journey finding a solution and that everybody feels well.

  8. Like
    dmlonghorn reacted to Batch in expecting heat wave this weekend   
    An interesting and timely thread...  I may be able to contribute... You be the judge...

    My formerly black pickup mid March, a week into the Red Alder tree (Alnus rubra) pollen fall...  It's gotten worse since then.  The Red Alder pollen catkins are nearly spent, but the Bigleaf Maple (Acer macrophyllum) pollen drop is just starting... 
    When I built the house in '82, I had a USDA Forest Service rep in to timber cruise the property.  He estimated the Bigleaf Maples growing near the creek were 200 to 220 years old with 34 inch diameter trunks at that time.  The Bigleaf Maple in the photo with sword ferns growing 20 feet up the moss covered bark has a 38 inch diameter trunk.  I measured its height with a laser range finder at 125 feet.

    The Bigleaf Maples are loaded with blooms... If last year was any indication... we've another two to three weeks of very high pollen count outside my bedroom window here in Kitsap County in the heart of Puget Sound, WA.
    So what does all this forestry have to do with cluster headache...  A lot!!! 
    I'm with Weatherman on primary and secondary triggers.  This concept makes good sense...  I've also been sharing data from the online survey of CH'ers taking vitamin D3 as part of the anti-inflammatory regimen to prevent their CH and some of my own observations with Dr. Todd Rozen, MD, Director Headache Program, Geisinger Health Care, Wilkes Barre, PA. 
    I've been working with Dr. Rozen since 2007 when I introduced him to the demand valve method of oxygen therapy...  Dr. Rozen was also kind enough to swing by my poster presentation on the results of the survey of 127 CH'ers taking the anti-inflammatory regimen to prevent their CH at the AAN Annual Meeting in Philadelphia, PA last April.

    I'm the old guy in the western getup on the right...  I didn't want any of the neurologists watching my poster presentation thinking I was a doctor...
    I'm normally on a maintenance dose of 10,000 IU/day vitamin D3 with a 25(OH)D serum concentration around 80 ng/mL to stay pain free for most of the year...  However, for the last two years starting in March, I've titrated up to 25,000 IU/day and by the end of March I'm usually up to an average of 40,000 IU/day vitamin D3 in order to stay CH pain free. 
    With the heavier than normal pollen this year, I've been averaging 50,000 IU/day vitamin D3 and doubling the magnesium to 800 mg/day since the first week in March...  Only it's not working as I'd hoped...
    It's a little embarrassing to be the vitamin D3 guru and still get hit with CH... but that was the case three weeks ago...  I started getting hit up to 3 times a night while taking an average of 50,000 IU/day vitamin D3... Fortunately, oxygen therapy with hyperventilation knocked down these hits in 5 to 7 minutes.
    At that point I went back over my notes and found the mechanism of action for an allergic reaction results in a flood of histamine... Pollen hits mast cells in the mucus membranes of the nasal passages, the mast cells dump histamines and other inflammatory agents into the surrounding tissues and blood stream and it's off to the races with an allergic cascade...
    Another interesting part of an allergic reaction is there's a spike in the absolute eosinaphil count...  When the absolute count of these specialized white blood cells goes over 350, it's a good indication there's an allergic reaction present.
    My PCP has been great following my use of vitamin D3 to prevent my CH, so I got him to write me a script for the CBC and WBC Differential blood tests...  I took the scripts over to the Naval hospital for a blood draw and two days later I got the results...  My absolute eosinaphil count was 390....
    Another check of my notes along with some open source standard of care recommended treatments for allergies and up jumped good old benedryl, a first-generation antihistamine.  The rational for taking a first-generation anti-histamine is they pass through the blood brain barrier where second- and third-generation anti-histamines do not.  This allows benedryl to block histamine receptors in brain cells... and in turn, slow or stop the allergic reaction where it counts most for CH'ers. 
    Accordingly, I started dosing with benedryl per the instructions on the bottle at 25 mg 4 times a day.  The results were dramatic...  In less than two days, the frequency and severity of my CH dropped to less than one mild hit a night (while sleeping), and these CH were so mild, they aborted very rapidly with two to three deep breaths of oxygen.  I've actually slept several nights totally pain free since starting the benedryl and I've also tapered my vitamin D3 intake down to 40,000 IU/day...
    When I shared this information with Dr. Rozen, he commented I was spot on target...  He indicated they frequently treat migraineurs and a few CH'ers hospitalized due to their headaches, with a benedryl IV.
    The thinking now is an allergic reaction impacts the vitamin D3 capacity to prevent CH by one or more of three mechanisms:  It totally overwhelms vitamin D3 genetic expression;  It interferes with vitamin D3 genetic expression; or the immune system response to the allergic reaction consumes available vitamin D3, it's metabolites and enzymes needed to hydoxylate vitamin D3 all the way to its hormonal form, 1,25(OH)2D3... leaving too little left to prevent CH...
    Sorry, my degree was in chemistry... Hydroxylation is a chemical process that introduces a hydroxyl group (-OH) into an organic compound.  In the case of vitamin D3, two (-OH) groups are added, one each to the 1st and 25th positions on the vitamin D3 molecule to make 1,25(OH)2D3.
    Connecting all the dots and piecing the puzzle together...  it appears an allergic reaction renders nearly all methods of CH intervention less effective at best... and totally ineffective the rest of the time...  That goes for imitrex,  oxygen, verapamil, vitamin D3, and psilocybin...
    Moreover, it also appears that treating the allergic reaction with a first-generation antihistamine makes these methods of CH intervention affective again.
    By the way, there are a number of studies that have concluded that mushrooms exposed to the UV-B in sunlight or UV lamps, results in a nutritional increase in the ergocalciferol (vitamin D2) content of mushrooms...  up to 990 IU/70 grams of fresh mushrooms...  If dried, the vitamin D2 content/gram is much higher...  See the following link:
    Please understand I'm not suggesting this is the mechanism of action in using psilocybin to bust CH...  There's a very real mechanism of action involved in psilocybin's capacity to prevent CH...  The vitamin D2 content is none-the-less a thinker...   Your thoughts?
    Take care,
    V/R, Batch
  9. Like
    dmlonghorn reacted to Freud in Gamacore   
    I found a person with ECH who has an old device that has gotten relief with it. The give away is over. 
  10. Like
    dmlonghorn reacted to Freud in Gamacore   
    Hi fellow cluster heads,
    i recieved a free gammacore through a free trial program my MD is in. The study’s show it doesn’t work that well for CCH and I would like to give it away. If some one out there gets good results but can’t afford one let me know. The divice has not been activated yet and is good for one month once it’s activated. I’ve been getting txt messages from them about programs they have now for people who’s insurance won’t cover it or you can’t afford it. You may want to look into it again if in the past that was a barrier to use. If no one with experience with them is interested I will open it up to anyone that wants to try one. It’s the newer second generation one. Not the original bulky one. It comes in original box with directions. It also works for migraines as well. So if I open it up to everyone all will be considered and I’ll have to figure out a raffle or essay thingy. 
    Looking forward to hearing from y’all!
  11. Like
    dmlonghorn reacted to Bilal in My D3 Regimen Log   
    It's been almost a year since I last posted. I guess it's true that you tend to take your health for granted. Fortunately, I've had the luxury to do so this year. I'm glad to report that ever since I started the D3 regimen I've been completely pain free. No more headaches, and not just CH. I don't recall having any kind of headache in almost a year. I've been thanking God and the fine people of this site that directed me to this regimen whenever I can. To those of you still undecided, please give the D3 regimen a chance and stick to the guidelines.  And to the people on this forum that helped me, from the bottom of my heart, THANK YOU.
  12. Like
    dmlonghorn reacted to Racer1_NC in Thank God for this forum and a few questions!   
    Personally I'd switch doctors if one laughed at me....
    Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.
  13. Like
    dmlonghorn got a reaction from Fíona in 2019 Patient Conference   
    Hello Everyone,
    This could be a great opportunity to participate in the clinical trial conducted by the Will Erwin Headache Research Center at the Memorial Hermann Mischer Neuroscience Institute (MNI) in Houston, TX - only a 30 min flight from Dallas.
    It's a blood draw and a questionnaire, I've done it, it's very simple.
    If you're considering coming to Dallas for the conference, please consider flying through Houston. 
    More info on the study / foundation can be found here:
  14. Thanks
    dmlonghorn reacted to MoxieGirl in Cluster rules   
    Making these up as I go along, just having a bit of fun. You're welcome to add some of your own.
    First rule of clusters: No two cluster sufferers have the exact same symptoms. Second rule of clusters: Just as soon as you figure yours out, it changes. Third rule of clusters: Try everything. What works for you may not work for others and vice versa.  Forth rule of clusters: My triggers are not your triggers, and your triggers are not mine, but they might overlap.   
  15. Like
    dmlonghorn reacted to jon019 in Cluster rules   
    ….it won't kill you...no matter how many times you wish it would....
  16. Like
    dmlonghorn got a reaction from Brain on fire in Congress is Useless - Paid Political Hacks   
    5:18PM and 10:18 PM
    Me too...
  17. Thanks
    dmlonghorn reacted to Siegfried in yoga   
    Hi Anthony,
    I have done traditional hatha yoga for 12 years on an intensive level and I finally stopped it as it always had a devastating effect on my headaches. Both on migraine and cluster headache. I always thought it was not possible yoga could make my condition worse but finally have to acknowledge it actually does.
    Yoga addicts can pretend whatever they want but in my case, yoga has done absolutely nothing for my headaches, on the contrary, these exercises are pushing a lot of energy to the head and just intensify the headaches and make it worse overall. I have stopped practicing for 6 months now and I have seen a slight improvement over time and no more so often these violent breakout of attacks (both migraine and cluster).
    My suggestion: stay away from any indoors activity and do something outside in the open air. However if you believe in the yoga hype, don't hesitate to try it and if it worsen your condition, you can be sure yoga is the culprit. I think for our condition, tai-chi and chi-gong are better choices if one is looking into Eastern mind-body oriented practices.
    All the best !
  18. Thanks
    dmlonghorn reacted to Batch in Congress is Useless - Paid Political Hacks   
    Complain to Congress you say.  It is bought off.   A reported army of 1440 lobbyists for the pharmaceutical industry is in Washington DC.  The pharmaceutical industry spend $280 million on lobbying Congress in 2018.  That amounts to a half-million dollars per member of Congress.   BOUGHT OFF: Why You Don’t Hear About Low-Cost Natural Remedies In The News
  19. Like
    dmlonghorn reacted to JJinNJ in Congress is Useless - Paid Political Hacks   
    I have a M.D. friend who works in the big pharma industry. "Remember", he tells me, "healthy people and dead people are not profitable!"
  20. Like
    dmlonghorn got a reaction from FunTimes in Pain / Symptom Tracking Apps   
    Has anyone found a reliable app to track pain / symptoms related to CH?
    There's a ton of these apps out there, but I've found they're often bloated with irrelevant features or just kinda work for CH.
  21. Like
    dmlonghorn got a reaction from Brain on fire in I'm in!   
    He's awesome! A very cool, down to earth guy. I'm still super sensitive to sound, so he ensured the nurse taking the blood was aware of my sensitivity. Which, I must add, she was amazing. Whispered to me the entire time, ha! While I was giving blood, Dr. Burish went into the waiting room and asked my Dad if he wanted anything to eat or drink and they chatted until the blood work was completed. Then it was just a simple Q&A / interview session.
    The greatest part is that he genuinely cares and is focused on what I find most fascinating about CH, the circadian aspects.
    Yes - He's here in Houston, only a couple hours away. Please participate, let's be pioneers!
  22. Thanks
    dmlonghorn got a reaction from Brain on fire in I'm in!   
    I spoke with Dr. Burish with the Will Erwin Headache Research Foundation and will be meeting with him tomorrow to participate in his study. 
    Very excited!
  23. Like
    dmlonghorn got a reaction from Dennny in Some of your questions answered here...   
    Quite interesting, thank you
  24. Haha
    dmlonghorn got a reaction from Freud in Fog = Shadows?   
    I always thought the O2 was supposed to be used for the bad attacks, but sure enough, cleared up the fog like a warm sunrise.  Thank you.
    And Thanks all for your feedback. Now when I hear hoofs, I'll think O2.
  25. Like
    dmlonghorn reacted to jon019 in Fog = Shadows?   
    ….a clusterhead's gut is better than many a doctor's head....and CERTAINLY better informed...….