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Dallas Denny

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Everything posted by Dallas Denny

  1. Dallas Denny

    Waiting on my 2nd cycle

    Welcome to the community Nick! Unfortunately, there aren't any answers to your questions that are set in stone! However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal. The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly! And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs! Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum! Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!! Read and ask questions! Be well! Dallas Denny
  2. G'afternoon @omarmosleh! Just curious if you've received any email responses yet? I've seen 2 comments on my Facebook thread so far...I've met one of them at our annual clusterbusters patient conference in 2015 and she said she'd be willing to speak to you....I also chatted with a young man from Alberta who I've been mentoring for the past couple of years and he said he'd get in touch with you as well. I've also reached out to a Canadian doc that I've known for many years, and who has many years of busting experience but haven't heard back from him yet. Thanks for your interest in this project! Dallas Denny
  3. @omarmosleh I know several Canadian clusterheads who bust, with your permission I'll be happy to copy/paste your post and contact info to a Facebook support group for clusterheads where they are members. Dallas Denny
  4. Dallas Denny

    Nurtec medication?

    @Phantom99 Aimovig is one of the CGRP class of medications that have been developed over the past several years.....from the reports I've seen it's overall results are much like other cluster pharma meds....works for some and not for others I'm sad to say. Emgality is another one of the CGRP meds and actually has a dosing protocol specifically aimed at clusters...again, doesn't seem to work for all but from what I've seen, it has a higher efficacy than Aimovig. Dallas Denny
  5. Dallas Denny

    New neurologist and OXYGEN - Indocin anyone use it?

    Indocin and indomethacin are the same drug.....it's usually prescribed (and works well, usually in just a few days) for a hemicrania continua diagnosis and is also used as a diagnostic drug since it doesn't usually work for clusters....odd that they would prescribe it along with frontline cluster medications! Dallas Denny
  6. Dallas Denny

    Anyone live in CT or in tri-state area

    @Woobyjay @Desperately Seeking Relief if ya'll maintain a presence on Facebook shoot me a PM and I can put you in touch with several clusterhead friends who live in NY, NH, and Mass.....can't recall any that are in Connecticut but the folks I know usually have at least one meet n greet a year for clusterheads in the new England area! Clusterbusters actually had a cocktail party in the works in NYC but I'm fairly certain that was postponed or canx due to covid. DD
  7. Dallas Denny

    My first share - My experience

    Welcome to the community Bust, sorry you had the need to join us!! Awesome first post! Dallas Denny
  8. G'mornin ya'll I just read a Facebook post put up by our longtime member Godsjoy777 asking for prayers! Karen's husband Calvin is in ICU in Dallas. Dallas Denny
  9. Dallas Denny

    Severe headache

    Hi Graci and welcome to the community! To be honest, what you're describing doesn't sound like classic cluster headache to me. Typically clusters are one sided with pain behind the eye, temple and forehead accompanied by runny or stuffy nose and a watery or tearing eye. If your neurologist isn't also a headache specialist, I would advise trying to find one who is.....I'm sorry to say that I'm not familiar with one in your area though! Gabapentin aka neurontin usually doesn't work well for clusters and there's other front line approaches so I doubt that your doctor is very knowledgeable about clusters! Dallas Denny
  10. Dallas Denny

    MICRODOSING LSD

    G'afternoon microdosing Definitely agree with Chfather that the antidepressant did not trigger a cycle for you.....and, I'm also not convinced that microdosing is an effective treatment for clusters. As Vipul mentioned above, high flow oxygen therapy and the D3 regimen are your best bet in managing your clusters. As to Mirtazipine, most, if not all anti depressants in the SSRI class are contraindicated when it comes to busting due to the risk of serotonin syndrome....a quick Google search shows the following: warnings Serotonin syndrome warning:Mirtazapine can cause a life-threatening condition called serotonin syndrome. Your risk may be higher if you also take other drugs that have similar effects as mirtazapine. These include antidepressants or triptans, such as sumatriptan and zolmitriptan. Symptoms of serotonin syndrome include agitation, hallucinations (seeing or hearing something that isn’t there), confusion, trouble thinking, coma, coordination problems, and muscle twitching. They also include stiff muscles, racing heartbeat, high or low blood pressure, sweating, fever, nausea, vomiting, and diarrhea. Call your doctor right away if you have these symptoms. Besides these dangers, the therapeutic effects of busting may well be blocked by the antidepressant. Best wishes Dallas Denny
  11. Dallas Denny

    I'm finally here.

    Welcome to the community Lee! You'll never forget making the conference....4 down and hoping to make Chi Town number 5! Dallas Denny
  12. Dallas Denny

    Lithium or Occipital nerve block

    Hey FunTimes! One name that comes to mind is Giuseppe from the old ch dot com board.....I recall that he has fairly good success with the lithium/verapamil combo! I can't recall any reports from folks that busted while using lithium....I've always just parroted the info we have in our files about it being an enhancer. DD
  13. Dallas Denny

    Letter to employer and family?

    Here ya go wing_nut! http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54 Dallas Denny
  14. Dallas Denny

    What if there WAS a CURE?

    Just smfh....
  15. Dallas Denny

    What if there WAS a CURE?

    Lmao! I caught that as well @Brain on fire......let's see now....I learned about welding oxygen from Marc from down in Bastrop Texas in 2007 on DJ's site.....this site went live in Oct of 2009.....this guy came along in his previous incarnation in 2015.....AND I can assure you we was spreading the message far and wide and loud and proud when he got here so I'm really not sure what he thinks he's taking credit for.......BUT THAT AIN'T IT.....and in the eternal words of Potter, I call BULLSHIT!!! DD
  16. Dallas Denny

    Ketamine test on Dr.John Lilly

    ^^^^^^ @Pebblesthecorgi wins the internet for today!! Muahahaha!! Spot on my friend!! DD
  17. Dallas Denny

    Upping D3 intake

    https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  18. Dallas Denny

    New to this forum – Cast Iron until hit by CH

    G'mornin Cast Iron and welcome to the community....sorry you need to be here! Excellent first post...you left nothing out for us to question you about that I can see! I do find it sad and ironic that you live in one of the few countries where "busting" supplies are legal and readily available but your personal convictions eliminate that option! However, that being said, I'm afraid your dependence on rather high doses of verapamil to manage your clusters would make it extremely hard for you to titrate down to a level that would be conducive to busting anyway... From the various reports on Emgality both here and on Facebook it seems to me that efficacy thus far is hit or miss....much like most options we have available to us as clusterheads! Sending positive thoughts and painfree wishes from this side of the pond! Dallas Denny
  19. Dallas Denny

    spread sheet

    Correct BOF..... it's called Nobism now CJW....Rogier is a fellow clusterhead, member here, and developer of the app...he's been working on and tweaking it for several years and recently spoke about it at a large medical conference in the UK. https://nobism.com/ DD
  20. Dallas Denny

    New to the group

    Agree with the minimalist approach @MRUPE! Although I highly recommend the D3 regimen solely bbased on the "anecdotal evidence" that I've witnessed as it was being documented over the years, I don't personally use it.....when I got here 10 years ago I committed to "busting" as a treatment and didn't want to "muddy the water" by adding the D3 and then not knowing for sure which strategy worked!! When I got here I viewed clusters as a curse but thanks to this place it's become an annoying inconvenience! DD
  21. Dallas Denny

    New to the group

    Lol @jon019.....yuppers. that damned old anecdotal evidence saved my freakin bacon.....damn proud I didn't have to wait for completion of the Yale psilocybin trials to get on board!! DD
  22. Dallas Denny

    New to the group

    G'evenin MRUPE! Batch, who came up with the vitamin D3 regimen, is an old Vietnam era Navy fighter pilot, and a fellow clusterhead with a chemistry degree!! You're correct in that there are no double blind trials, however, Batch has been collecting survey data from the many clusterheads who've had tremendous success with the protocol since he came up with the it almost 10 years ago.....that data shows a efficacy of around 75%! I couldn't begin to tell you how it works but I've listened to Batch speak at our yearly patient conference and I can tell you that there's a sound reason for each of the co factors and that they all work in correlation with each other. Dallas Denny
  23. Clusterbusters Has Exciting News for 2020 Dear friends, For nearly 20 years, Bob Wold has managed Clusterbusters as a volunteer. He takes our desperate calls in the middle of the night, answers emails, travels, organizes, and sacrifices time with his family in order to ensure that every person living with cluster headache has the best life possible. His efforts in education, driving research, and support are unprecedented and unparalleled. In addition, Bob has held a regular job to help support his family. He does all of this, likely working 80 or more hours a week in total, with so much kindness and without complaint. He also lives with the same crippling disease that we are fighting to eradicate. We are living in a special time in the headache community. More attention is being given to research and to our disease. We have received tremendous support from the research community and even more amazing support from our own patient community. It is time for Clusterbusters to make a change. We have a growth opportunity, but we need to focus. Consequently, Clusterbusters is proud to announce that we have asked for and received Bob's resignation from our board of directors. He is no longer our president. Instead, we have hired him as our Executive Director. He will now work under the direction of the Board of Directors full time to carry out the mission and vision of Clusterbusters that he developed in the early part of the 2000s. As the position of President of the Board has been vacated, I have been asked to serve as the President and I have accepted this position. I am so proud to be able to continue to serve this community that has given me so much. Thank you all for your support. As you may know, we have added Ainslie Course to our Board of Directors. We are excited to include her as this will help us to grow and expand our reach. Thank you, Ainslie, for adding your talents and light to our community. We will be continuing to grow our amazing organization. We are so proud of Bob Wold, those who came before us, and all of the accomplishments of Clusterbusters, and we are looking forward to helping to shape a better future for everyone living with cluster headache. Sincerely, Eileen Brewer President Clusterbusters Connect with us ‌ ‌ ‌ Clusterbusters | P.O. Box 574, Lombard, IL 60148 Unsubscribe dennispohlenz@yahoo.com Update Profile | About Constant Contact Sent by eileen@clusterbusters.org in collaboration with
  24. Dallas Denny

    K Cure for Cluster headache?

    I heard that only worked if you boofed it @Rod H!!!
  25. Dallas Denny

    Richard Alpert aka Baba Ram Dass

    "We're all just walking each other home"...Ram Dass Rest in peace just doesn't seem appropriate so I'll just say safe travels and happy trails.....and Thank you!! DD
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