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CHfather

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  1. Like
    CHfather reacted to Dallas Denny in Conference Cultivation Workshops   
    I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda!
    I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week!
    I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins.
    All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it!
    See ya'll soon!!
    Dallas Denny 
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  3. Like
    CHfather reacted to Dallas Denny in Open letter to major chemical companies (BOL-148)   
    Yes, unfortunately I did Jerry!  TBH, my take from the whole deal was it was more about "bruised egos" than anything else!  Having met him, I was really quite fond of John and have the utmost respect for doc Sewell so I didn't take sides but was incredibly sorry to see dedicated cluster advocates at such odds with one another!
    Dallas Denny
  4. Like
    CHfather reacted to Dallas Denny in Open letter to major chemical companies (BOL-148)   
    G'mornin Jack!
    Thank you so much for your interest and desire to be of assistance to the clusterhead community!  Glad to see that you're in contact with our fearless leader and my personal hero!
    I had the pleasure of meeting and visiting with Doc Halpern at our annual patient conference in Portland in 2010!  The thing that struck me most during those conversations was his compassion and desire to help all cluster headache patients....but he said he was driven most by the thought of sufferers in developing countries who had limited access to health care and medicine, no access to the internet.....folks who were destined to live their lives in agony with no chance of relief! 
    As a man in his late 30's and early 40's, I lived that life for 7 years....reduced to rolling around on the floor at times, crying like a baby, begging my wife to blow my head off, enduring the exquisite pain that is clusters for an hour or more with each attack, and experiencing 4 or 5 individual attacks in a 24 hour time period!! 
    Not a pretty picture and I'm so grateful that I found clusterbusters and alt meds......clusters now are more like an annoying inconvenience for me....and,  because I have this affliction, I've been blessed to meet and become friends with some of the kindest, most compassionate and caring folks on this planet!!
    As to the efficacy of the CGRP meds like Emgality and Aimovig.....Eli Lilly has been a conference sponsor for several years so we've had a front row seat throughout the development and trials of Emgality......from what I've observed thus far in the online clusterhead support communities it is much like most other pharma meds for ch....works extremely well for some and poorly or not at all for others......but, it's progress and we'll take all of that we can get! 
    Onward!!
    Dallas Denny
  5. Thanks
    CHfather got a reaction from JF_RegenicaBio in Open letter to major chemical companies (BOL-148)   
    Bob is a hero to many of us.  And everyone who keeps it together while coping with CH is a hero to me, too.
    There's no reason for me to be chiming in here, and absolutely no need for you to respond. I had a strong psychic investment in this (my daughter has CH) back then, and a financial investment in Entheogen (in the form of donations) that was not insignificant for me.  It's my understanding -- which could well be wrong in many places -- that there are two patents at issue. One is the patent for BOL-148 (2-bromo-LSD) itself, and one is the patent for using 2-bromo to treat CH. I know that John Halpern and Torsten Passie patented the latter around 2010, though I think maybe the patent holders are the institutions where they worked, Halpern at MacLean Hospital and Passie at a German hospital.  I think Harvard holds the BOL-148 patent because Albert Hoffman invented it there in the 1940s (but I know the patent for plain LSD was "assigned" to Sandoz).  
    I have attached a little booklet that ClusterBusters put together a few years back.  Living with CH - 8.5x11 - 9-15-14.docx
  6. Like
    CHfather got a reaction from BKP in Finally a diagnosis and D3 update   
    BKP -- Maybe a triptan nasal spray will work for you.  Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.  
  7. Thanks
    CHfather got a reaction from JF_RegenicaBio in Open letter to major chemical companies (BOL-148)   
    I'm sure we all wish you the best, and appreciate that someone with your drive might be taking on the challenge. Bob W is the right guy to be talking to about the background and realistic prospects.  Thank you.
  8. Like
    CHfather got a reaction from Dallas Denny in Open letter to major chemical companies (BOL-148)   
    Jack,
    As Denny says, a lot of us got our hopes way up for the availability of BOL through the company called Entheogen, which we were told year after year was on the verge of success, until it collapsed.  I won't do that again, but will wish you well if you want to give it a shot.  You expressions -- "quick, safe, reliable, affordable," etc. -- seem vastly optimistic to me, but maybe a smart, young, innovative, entrepreneurial fellow like yourself can make it happen.  
  9. Like
    CHfather got a reaction from Dallas Denny in Open letter to major chemical companies (BOL-148)   
    Jack,
    As Denny says, a lot of us got our hopes way up for the availability of BOL through the company called Entheogen, which we were told year after year was on the verge of success, until it collapsed.  I won't do that again, but will wish you well if you want to give it a shot.  You expressions -- "quick, safe, reliable, affordable," etc. -- seem vastly optimistic to me, but maybe a smart, young, innovative, entrepreneurial fellow like yourself can make it happen.  
  10. Like
    CHfather reacted to Psiloscribe in Emgality for episodic   
    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.
  11. Like
    CHfather reacted to Ddikevin in Emgality for episodic   
    I am a long time episodic sufferer and normally had the two cycles spring and fall. In the last couple of years I had been using prednisone taper and sumatriptan as needed. In the beginning the prednisone worked quickly stopping the headaches within 48 hrs but now it seems like it takes a week or more for it to stop them . This in turn has increased the amount of Triptans I have been using. I noticed a big change this year as I am now in my 4th cycle and it seems like I only get a month break between cycles. I had a discussion with the researchers at Yale and they said that the prednisone and triptan use could be increasing the amount of cycles that I am experiencing. I had heard of Emgality and got a prescription from my neurologist. I got two injectors and stored them in the fridge and will receive one injector every month after that. Maybe two weeks after receiving emgality I felt the shadow signs of another cycle so I decided to try it. I did the two injections and the next day felt very tired.  But for nearly two weeks I didn’t have any shadows. One or two days before I had to refill the prescription I had a mild attack lasting 5 or 10 min, very bearable.  I refilled the prescription and took another injection and now for a week or so the mild attacks come in the morning and after I go to bed. I am hoping to ride this one out without steroids or triptans and keep taking the Emgality every month as a preventative. I will update here as this cycle continues on Emgality.
     
  12. Like
    CHfather reacted to Dana129 in Life Update   
    Well guys, I’d like to start with my weight loss, as some of you may have read in my earlier posts, perhaps about 2 months ago now I believe, I had a significant weight gain from 75 kilos to 88 in the space of 4 months from January, where my cycle started, the cycle was only small, but I had dealt with heavy post cycle shadows for a several months. As a result, I stopped going to th gym and began eating very unhealthy, before I knew it I went from being quite fit and athletic to overweight, I am please to say that I am at the half way point, i now weight 81.3 kilos, only 6 more kilos to go before I reach my original weight, I attribute my motivation to lose the weight to living pain free for the last 2 or so months, the d3 regimen has pretty much made me feel as normal as I was before my first ever cycle, It’s the best thing I could’ve ever asked for, also, was going to save shrooms for desperate times, but I figured I may as well add another layer of protection for my brain and have some fun as well, I’ve been hitting the books hard, and my social life is back to normal as...even met a lovely lady on tinder ( ͡° ͜ʖ ͡°). Pretty much, I haven’t been this happy since before my first cycle, and I would say that this forum is the best thing to ever happen to me...I don’t think I’d be where I am right now if it wasn’t for this place, so thank you, now the only painful thing I have to worry about now is having my foreskin cut off
     
    PS I’m going to the burning man this year, SUPER EXCITED 
  13. Like
    CHfather reacted to Freud in Finally a diagnosis and D3 update   
    Refresh my memory, but weren’t you saying the headaches come and last the whole day with no breaks?  That sounds like a dead ringer to me for hemiacrania continua. Also mimic some CHs. Did the doc have a reason why the doc thought it was CH and not HC? It still may be worth trying the indomethacin. A small group of CH patients respond to it according to my old CH doc. 
  14. Like
    CHfather got a reaction from Freud in Finally a diagnosis and D3 update   
    kat' -- Glad you got a diagnosis. Hope the steroids help.  Unlike regular cluster headaches, atypical CH often has an underlying physiological basis, such as something going on with the pituitary gland. Have you had an MRI? (From a journal article: "Based on this review, I suggest that neuroimaging, preferably contrast-enhanced magnetic resonance imaging/magnetic resonance angiography should be undertaken in patients with atypical symptomatology" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3928394/)
    Your doctor should prescribe it, particularly since you have the diagnosis and an apparently caring doctor (Yay!). It's listed in all the medical resources as the #1 abortive.  If you can't get a prescription or run into insurmountable hassles with insurance, welding oxygen is an option that many people use.
  15. Thanks
    CHfather got a reaction from kat_92 in Finally a diagnosis and D3 update   
    Atypical means that it doesn't have all the symptoms of the "typical" cluster headaches that most people have. What that article says is that atypical CH often comes from causes such as pituitary gland issues that are not the causes of "typical" CH. There is no identifiable cause of typical CH. 
  16. Like
    CHfather reacted to BKP in Finally a diagnosis and D3 update   
    Did he give you Prednisone? I've been on it before because I have asthma but I went to the dr. back in 2015 and thats what he prescribed me along with 2 Imitrex self injection shots which I can NOT do. I don't see how people do this especially with diabetes and stuff. Funny story. I was able to get the first shot off because I didn't know what to expect as far as the pain and the sharpness of it. But it IMMEDIATELY took my headache away. When I went to do the second one, I couldn't bring myself to do it because I knew what to expect, lol. Never took the 2nd shot. 
    But yeah it doesn't seem like you're having full blown headaches so the D3 might be working more than you think. It doesn't always take them away but lessens the impact and duration for some people. Until you're basically writhing around in pain, holding your head, praying for it go away, its not full blown I don't think. When I describe the pain to some people, the best way to describe it to me is like a brain freeze that lasts from 15 min to up to 3 hours(rarely do mine last 3 hours, usually 15-30 minutes.
    How long have you been on the D3?
     
  17. Like
    CHfather got a reaction from Freud in Surgery for adolescents with CH   
    I don't really understand most of the crucial terms here, but it still seems interesting enough.
    Long-term efficacy of superficial temporal artery ligation and auriculotemporal nerve transection for temporal cluster headache in adolescent; Chang B, Zhu W, Zhu J, Li S; Child's Nervous System (Jul 2019)
    Tags:
    OBJECTIVES Cluster headache is a primary headache disorder, which has affected up to 0.1% population. Superficial temporal artery ligation combined with auriculotemporal nerve transection (SLAT) is one of the surgical alternatives to treat the drug-resistant temporal cluster headache (TCH). The current work aimed to assess the effect of SLAT on TCH patients based on the very long-term clinical follow-up. METHODS The current retrospective study had enrolled 20 adolescent TCH patients undergoing SLAT between December 2016 and January 2018. The headache diaries as well as the pain severity questionnaire of the visual analog scale (VAS) had been collected to measure the pain severity before and after surgery.
    RESULTS The pain-free rates 3 days, as well as 1, 6, and 12 months, after SLAT surgery were 2.00%, 10.00%, 25.00%, and 70.00%, respectively. The frequency of TCH attack daily was found to be markedly reduced on the whole; besides, the pain degree was also remarkably decreased.
    CONCLUSIONS Results in this study indicate that the sustained headache can be relieved after SLAT in adolescent patients with intractable TCH.
    https://www.docguide.com/long-term-efficacy-superficial-temporal-artery-ligation-and-auriculotemporal-nerve-transection-tempo?tsid=5
  18. Like
    CHfather got a reaction from Freud in Melatonin & pineal gland   
    Some more info about melatonin (more than I knew, anyway), and more thinking about understanding the brain processes involved in CH.
    Current understanding of pineal gland structure and function in headache; Peres M, Valença M, Amaral F, Cipolla-Neto J; Cephalalgia 333102419868187 (Aug 2019)
    PURPOSE The pineal gland plays an important role in biological rhythms, circadian and circannual variations, which are key aspects in several headache disorders. OVERVIEW Melatonin, the main pineal secreting hormone, has been extensively studied in primary and secondary headache disorders. Altered melatonin secretion occurs in many headache syndromes. Experimental data show pineal gland and melatonin both interfere in headache animal models, decreasing trigeminal activation. Melatonin has been shown to regulate CGRP and control its release.
    DISCUSSION Melatonin has been used successfully as a treatment for migraine, cluster headaches and other headaches. There is a rationale for including the pineal gland as a relevant brain structure in the mechanisms of headache pathophysiology, and melatonin as a treatment option in primary headache.
    https://clusterbusters.org/forums/forum/13-research-scientific-news/?do=add
  19. Like
    CHfather reacted to Brain on fire 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. 
  20. Like
    CHfather got a reaction from spiny in Intro / Vitamin D   
    Vitamin D: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
    I would also urge that you might read this for an introduction to things you can or should do: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  21. Like
    CHfather got a reaction from spiny in Intro / Vitamin D   
    Vitamin D: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
    I would also urge that you might read this for an introduction to things you can or should do: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  22. Like
    CHfather got a reaction from boydsmith in Cbd oil   
    I feel like reports regarding CBD oil are all over the map -- different types, different uses (aborting vs. preventing), different levels of success.  If you just type CBD into the Search bar near the top right of the page, and be sure it's set for "All Content," you'll see more than 100 posts, which you can browse through.  Enough reported successes, I would say, that it's worth trying.
  23. Like
    CHfather reacted to Darren in Intro / My experience / and Questions   
    Back with another update. The 2nd prednisone taper (or just coincidence on timing) ended the last one in October of 2017. Enjoyed a 21 month PF remission, until it ended last Friday. Had attacks at 11pm, 4:45am, and 8am. Unusual, as my cycles have always started gradually with one attack every other day, and ramping up to 2-5ish attacks / day within about a week of the start. I've never had 3 within a 9 hour window like that right at the beginning of a cycle. But, one thing we all know is that CHs have a way of changing up on you just when you think you figure them out.
    Started my Prednisone taper Saturday at noon. 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Day 6 of the taper today, so, started up on the Verapamil - 80mg x 3 / day (pretty low dose). So far, no attacks since starting Prednisone on Saturday. I do also have my home o2 delivered already, and ready to go. And, I bought a regulator that goes up to 25L/min. So, will be able to use a higher flow rate vs. the 15L/min that I had previously. I have my Zomig ready to go as well; but, am going to try to only use that if out, and without access to o2. Pretty confident that I started getting overuse headaches due to the zomig on one of my more recent cycles. So, I'm proceding with caution on that one. Works great, and I've used triptans to abort for years. But, if I am able to successfully abort with o2, then that will definitely be my preference (still new to o2).
    I have an appointment booked with my neurologist on Tuesday of next week; just to see if he wants to make tweaks to anything. Or if there are any new advances that he suggests trying. I suspect he will stick with the same, to try to figure out exactly what does / doesn't work for me. If he does change anything, my guess is that he will up the Verap dose. Especially knowing that he likes to do things systematically. Not sure what to expect with this taper, as Pred did completely abort a cycle for me once before, then didn't work the second time, then the 3rd time, it was a 2nd taper on the same (unsuccessful) cycle; towards the end of the cycle. So, I'm not sure whether it was timing or the Pred that ended it that time. 
    Last time that I went to see my neuro (2017), I asked about the D3 regimen, as well as busting. He suggested holding off on those approaches until we see if the current treatment works / doesn't work. He wasn't suggesting that either were a bad idea. He fully agrees that there are a lot of people finding benefits with them. But, I know he likes to take things one step at a time, so that we know what it is that's working, or what's not working. I'm not a fan of being on all sorts of meds (pred, verap, etc.). But, like all of us, I also would do anything to avoid the pain of these stupid things. I'm ordering RC now, just so that I have that option available to me. In case the taper doesn't work, and perhaps as a maintenance dose between cycles. And will ask him again on Tuesday about D3, and if he can order the blood tests to get it setup.
    Will try to update again, as things progress. Whenever I'm in a cycle, I lurk the board like crazy; reading everything. And then when my cycles end, I tend to try to completely block things from memory, and don't find myself visiting the forum. But I realize that it's equally important to share my experiences, as we all benefit from knowing how things go for others. Not just treatment wise, but, also just to know that others are suffering the same way. 17 years for me now. Happy my remission periods seem to be getting longer. But, have found with longer remission periods, the cycles tend to be a lot worse (more and stronger attacks). Will see how things go.
  24. Like
    CHfather got a reaction from Freud in Age? Altitude? Verapamil? Zomig? Exercise?   
    andy', you've received great advice from several of the best advisors here, and I see from other posts that you're following up on it.  DO NOT be deterred from getting O2.  Your doctor has started you on the right path, except for surrendering much too easily regarding oxygen.
    I tried to put the various things I know into one document, and you might look through it for other info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   That post also includes the info that is in the "New Users...Read Here First" link at the top of every page.  You might or might not be ready to consider busting now, but it will be good for you to know about it.
     
  25. Like
    CHfather reacted to spiny in Age? Altitude? Verapamil? Zomig? Exercise?   
    Hey Andy! Glad that you found us.
    Falling barometric pressure is a main trigger for me. And, I live on a little mountain! So, going down the mountain after the Fall Equinox is problematic. Going down is fine - coming back home can be a bear. I attribute it to less pressure out = more pressure in. Very stupid simple idea. but how I look at it. It can work differently for others from my reading. 
    Your doctor is correct about O2 being difficult to get through insurance. But, there are ways to push for it. I suspect that someone will post the piece on how to go about it here soon. I am very glad that she is pushing for the scan first! Rule out other conditions first. If you come up blank there, you can set up a welding rig and bypass insurance. Set up costs a bit, but the monthly outlay is cheaper than Medical. So, if you have to foot the bill, that is an option too look into.  
    You should look at the D3 Regimen. It is well documented and has worked wonders for a large percentage of CHers'. It consists of a list of vitamins you take daily with the aim being to raise your D3 levels and reduce inflammation. It has helped many go pain free and others with a reduction in severity of hits and a slower come up so you can treat it faster and more effectively. Or get home before you can't! I would suggest getting your D3 level checked out as well as the scan.Many of us have low D3 levels in our blood and returning that to an acceptable range has been pretty magical for  lot of us. Batch is the member who has done all the work, with the involvement of physicians along the way. Minimal cost and no insurance in the middle. 
    Aging out has long been a statement among doctors. I believe that the oldest known Clusterhead is around 90+. We have several members who are in their 70's and still have active CH. 
    I had a great remission that lasted ten years. I started visiting the mountains and surprise - the beast is back! I cope by taking some caffeine at the start of the return trip. If there is no falling pressure due to weather, I can get through fine with that for most trips. A two lane mountain road is no place to have a hit.     
    ATB and keep asking questions! 
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