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Everything posted by ThatHurtsMyHead

  1. ThatHurtsMyHead

    Anyone need a Zoom Chat?

    This is such a great idea. I hope people that need it are making use of the ability to connect with our CH family. Those with CH really need connection and support. Cheers All! J
  2. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    All, Just wanted to post a quick note that the main clusterbusters.org website is currently down. I'm told there's an incompatibility due to an upgrade our Host just performed. They're in the process of making the required updates to our website and it should be up soon. Anyone with a direct link to the form isn't affected. Anyone that uses the clusterbusters.org website to get here, won't be able to get to the main site. I'll post additional info here as available. Cheers, J
  3. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    Attach success!!! : ) J
  4. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    CHF, I'm doing some other admin stuff this morning, so went ahead and built the new group while everything was in my head. I removed most of the site restrictions on content and put you in it. Please let me know if you can post etc easier now. If so.. I'm thinking about moving everyone with 1,000 - maybe 500 (?) posts to the new group and setup an automatic promotion. I'll want to get the mods thoughts before I enable it for others. But anyway. Please let me know if it's better. You should be able to paste in HTML and also attachments can be much larger. Cheers, J
  5. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    CHF, I just made some changes, see if you can attach now? I doubled the attachment size limit. I'm thinking about enabling HTML, but for security related issues (spammers, hackers etc), I have to leave it off. I can though, create a new Advanced / More Advanced group. ha ha. and enable HTML there. Let me do some research, as I think enabling HTML will greatly enhance the regular posters experience on the board. Cheers, J
  6. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    CHF, I'll look into your posting issues and see if I can fix. : ) I think they still have some fixes to make to the main site to get all the content back. Cheers, J
  7. ThatHurtsMyHead

    Permanent cure

    Manfred, His success rate is definitely not 99%. He and his son have come here several times trying to sell their supposed cure. Meanwhile there have been lots of people that are poorer and disfigured because of cutting nerves in their face and head. CH goes into remission for no reason at all some times. I'm glad you're pain free, but please don't post the word cure on here, else you're open to ridicule. Seriously there have been entirely too many people posting quack cures, non of which have actually been proven as a cure. Cheers, K
  8. ThatHurtsMyHead

    Do cluster headaches always come back?

    Dlions20, Yea, sorry to say, but they do come back. They can change pattern, get longer, shorter, more frequent, less frequent etc. Some of us have gone back and forth from episodic to chronic or chronic to episodic. PFW, J
  9. ThatHurtsMyHead

    Portable oxygen concentrator issued by VA

    RM, Also a VA care recipient. Don't bother with a concentrator, they can't deliver the high volume O2 that's needed to abort CH attacks. The VA provides me with an unlimited supply of "E" tanks. They're easy to store and transport. You can buy your own high flow regulator (the max they would provide me was 15lpm). I've bought my own 25lpm regulators a long time back. You can start huffing at 25 then turn it down as the pain eases. Myself and many others have tried the concentrators, and they're simply useless, due to the low flow. Cheers, J
  10. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    All, The website is back online. There were some challenges getting the old website to work with the changes the host made to the infrastructure. The decision was made to go ahead and post the new site that was in the works. Some of the links are work in progress, so if there's something you need just ask here. I'm sure someone has a copy or can get you what you're looking for. Cheers, J
  11. ThatHurtsMyHead

    Website Down - But Fix Is In Progress

    All, I just heard from the people that manage the main website. I'm told it could be several days to get it back up. Unsure what the challenge is, but I asked them to change the main CB.org default page to be the message board here for the time being. That way people can still get to us. Hoping to hear back quickly. Cheers, J
  12. ThatHurtsMyHead

    recommended doctor list

    BOF, Where is it something isn't working? J
  13. ThatHurtsMyHead

    UK Cluster Buster Testimonials

    timmydavis, I think I can speak for most of us that we appreciate your endeavor. Please keep from copying the same content to multiple places on the board though. It just gets a little challenging for people to get to the posts they need instead of seeing duplicates. I left this one in Research since it looks best located here. Cheers! J
  14. ThatHurtsMyHead


    sn0wh0p, I would ask that you try to keep posts to the topic of CH or helping those with CH. I appreciate your passion for experiences you've had, but there are plenty of websites for those discussions. Shroomery.org DMTNexus.com etc etc. I really don't want to limit your access, or be forced to edit your posts. Trying to enjoy or at least deal with taking our medicine is important, but it's clear some of your posts aren't related to CH and those posts really need to be put on those other boards. Cheers, J
  15. Klasterman, Sorry, but you've been banned. I don't take something like that lightly. I think maybe 3 in the entire time I've helped with this site. Being just plain hateful to anyone here is not acceptable. Your cure is not a cure. That's simple fact and sorry if I came across strong in my earlier post. I'll leave your content for a few days then delete. Good luck to you. That's not sarcastic, I truly hope you can reflect and grow. Cheers, J
  16. Klasterman, I appreciate that you're pain free, but cure it is not. Every week now it seem someone is coming here claiming a cure. Being in remission is not cured. Sounds like your cycle stopped. Again I'm happy for you, but you're like the hundredth person that have claimed a cure and none have actually been proven a cure. CH is an abnormality in our brains, the hypothalamus. There really is no cure without making a change to the hypothalamus.j You'll find that claiming a cure when you only have 3 days pain free is going to put people off. Oh my gosh. I just read that article and I'm cracking up. (sorry, I'm still glad you're pain free, but it has nothing to do with some pressure point, or a plastic device you press on your torso.). Since both those links are selling a supposed cure... I'll have to remove the links. If you have links to something legitimate that isn't selling a cure, they are welcome. PFW, J
  17. ThatHurtsMyHead


    Agreed with BOF. The correct script for CH is 3X the migraine dose. J
  18. ThatHurtsMyHead

    What if there WAS a CURE?

    DK, I've been keeping up with the thread, wondering if it was going anywhere. As others have pointed out. Someone comes to the board every few weeks announcing a cure. There is no cure. Only remission. I myself have gone 2 years without an attack, then back to episodic then to chronic. Others 10 years or more and it comes back. I manage my beast with the natural medicines primarily discussed on this board. That said. I like to follow Bob's lead and let people speak freely without fear of repercussions. MM was once thought of as being a quack management technique. It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen. If you feel cured, then I'm happy for you. I'd recommend not claiming a cure though. Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission. I thought verapamil was a cure many years ago. The first time my doctor prescribed it for me, my CH disappeared a few weeks later. I was over the top happy that I finally found something that worked. The next year my CH came back and I went to the doc for another script of verapamil. It didn't do anything. Absolutely nothing accept give me tachycardia. (A dangerously slow heart beat). I realized thinking back. The first year was about 2 months into my cycle. At the time my cycles ran 2 to 3 months. I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence. I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on. They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another). What works for one person, may or may not provide help for another. It's great you're in remission, but people will not take you seriously by claiming a cure. You're in remission, that's great and happy for you. Cheers, J
  19. ThatHurtsMyHead

    Question about fatigue

    BOF, You can always edit your own posts as well. Cheers, J
  20. ThatHurtsMyHead

    I’m new here. So happy to find this place!!

    I think Seth meant to post this here: Crazy thing, this my 3rd cycle. And, also on this one, it will skip a day, skip almost two days and come back. And also the time of episodes have varied. I’m episodic and seems to be every 2 years (2015, 2017, now 2019). These clusters super suck, I tried explain it to co-workers as at times I need run off and deal w/ this crap. But, explaining really don’t bring justice. No obvious open wound or blood shown, people don’t understand to much. But, this my first cycle really using oxygen, finally got this doc to prescribe me. Last cycle, she literally told me during a visit and discussion that, “I just gotta deal with it”! Tell me how yal feel about that. I was hot and damn near cried, like this stupid darn ......... Oh well, thanks be to “God” always.
  21. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exiegous, If you haven't gotten that script for sumatriptan filled yet, don't bother. Oral sumatriptan is pretty useless for our condition. You need the 6mg auto injectors. I was given the oral stuff wayyyyy back, and would just throw it up after 10 minutes of an attack. Also, it takes too long to get in your bloodstream to help us at all. The auto injectors usually work within 3 to 5 minutes. (I don't like the stuff, but it can be a life saver when nothing else is available). Cheers, J
  22. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Oh and don't forget to stay on the O2 for 5 mins or so after the attack stops. That normally prevents the attack from coming right back. Cheers, J
  23. ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Correct, as Spiny mentions. O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving. The only real risk at sea level or lower pressures is alveoli collapse in your lungs, (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time. This is due to Nitrogen washout. Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2. That adds enough Nitrogen back to your lungs for proper function for a very long time. Definitely O2 is the #1 abortive. There's no side effects and it's much safer than ANYTHING the doc can give you. Cheers, J
  24. ThatHurtsMyHead

    Anyone in Florida?

    Just messaged you my fellow Floridian. Cheers, J