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Welcome 01/25/2017
Welcome to the upgraded ClusterBusters forum. Please make sure that you login either with your email address or your display name (the name that appears next to each of your posts). If you have any issues, please email help@clusterbusters.org and we'll get it resolved.
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Hey Dylan, Great post and positive message. The topic of suicidal thoughts is of particular interest. As a CHer since 1994 and chronic since 2005, thoughts of "ending it" were present at times after turning chronic, particularly after starting another new preventative that didn't work. It wasn't until years later after discovering the wonders of vitamin D3 in preventing my CH that I started connecting the dots between suicides among CHers and the drugs they were prescribed to prevent their CH. The big dot to connect came from far left field, It centers on the School Shooters. Most are young kids and all were either taking prescribed psychotropic drugs or had recently stopped taking them. Even the Las Vegas shooter had been taking a psychotropic medication. These drugs are widely prescribed to treat psychotic, depression, bipolar, seizures, anxiety, panic and obsessive compulsive disorders. Many are also prescribed "off label" as preventatives for cluster headache. They include drugs with trade names like paxil, prozac, celexa, luvox, xanex, topamax, neurontin, depakote, zoloft, wellbutrin, propranolo and the list goes on... All these drugs have a few things in common. Their side effects are frequently worse than or exacerbate the very symptoms or conditions they're used to treat. In the majority of cases, these psychotropic drugs have mind altering, psychotic effects that leave the patient in a disturbed and confused state. I've known or knew of three CHers who ended their lives in the last 12 years. All were taking psychoactive drugs to prevent their CH. Granted this is anecdotal evidence at best. That said, I'm convinced out disorder has been given a bum wrap in being called the suicide headache when the real culprit was likely the psychoactive drugs CHers were taking. Any old hands out there willing to come up on this topic? Take care, V/R, Batch
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Dylan the potato changed their profile photo
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Outstanding, more info the better! I cover the vents and the strap ws first to go, but the rest is news and pure gold, many thanks for taking the time to explain. I will share those details with my uncle too.
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It's been a month since I started the regimen and I've only had 3 very mild attacks. Shadows are gone completely and I honestly don't feel like the condition is even there anymore.
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That's pretty essential, the mask with the air bag (reservoir). Your mask will probably have a small circle of open holes on one side. Cover that with tape, or with your thumb, as you inhale (so you're inhaling only pure O2). Be sure you have a tight seal with the mask to your face. Cut off the strap (so if you fall asleep the mask will come off). Is your oxygen in tanks (not a machine that makes oxygen)? Also very important. And a regulator that goes up to at least 15 liters per minute. And good breathing strategy. You'll find your own strategy, but for many it's deep breaths and very forceful exhales at the beginning (almost doing a "crunch" to force air out of your lungs). Some people hyperventilate with room air for 30 seconds before their first O2 inhale. Hold the O2 in your lungs for a few beats. Look down toward your feet as you are doing it all. For many, a shot of caffeine while starting the O2 speeds the abort: could be some pre-made strong coffee; many use the 2 oz. energy shots or energy drinks. Many have found that going beyond the standard setup of the basic mask and 15 lpm makes a big difference, but let's see how it goes for you with what you have.
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I've been thinking a lot about the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going. I had trouble coming to terms with having CH and that it even existed. The pain was always a reminder that this is real. That i have this. That too many people have this. I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way. I don't have much in the way of super helpful advice for anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong. I see so much unity in this community and so many people helping each other out whether it be with advice straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox.
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Well...yours unfortunately seems to be a rather complicated situation. I'm new here myself. didnt know what it was even while having my first attacks. Ive had it since i was 18 and managed to get an official diagnosis a couple months before my 20th birthday. It seems to take a while longer for others. Like CHfather said we aren't sure if its CH. We here cant diagnose you obviously if you don't know if it is...but i will tell you I'm so sorry you're going through this. Not knowing and having a outright diagnosis can be very difficult...and not knowing where to start with pain management and finding some form of treatment is as well. I still struggle with figuring out what to do and have a ton of trouble coping but am making progress. Especially after joining up here. I hope the very best for you and i think i can speak for many of us here that whether it is or not we support you in finding your way. Stay strong and hang in there.
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HEY THERE! Welcome. I'm a bit of a newbie here too though my accounts been pretty dormant. There's plenty of great people and I'm sure you'll fit right in here. I'm not as knowledgeable or experienced as most but there's plenty of advice many others here can give you.
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Thank you both, glad to have found you and this board. I only knew 4 others with CH, so definitely looking forward to learning from your experiences. I'm on thin ice at work with lost time and need to figure this all out soon. I got signed up for intermittent leave under ADA, so that was a victory for sure. O2 has had mixed results but i finally have the mask with air bag, so here's for hoping. Never heard of D3 treatment, I'll start looking there. Kaiser here had zero CH docs, but i managed to find someone recently whos knowledgeable and real cool. So far, I've ID'd 2 main triggers... prolonged stress and rapid barometer changes. Ok, back to reading, thank you again for the warm welcome. - Chris "Wimpy"
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wimp', it is good to read. As you would quickly see from your reading, the most significant thing you should have is oxygen. If you had it before and it didn't help you, you probably need to try it again, with a better system. You should almost certainly also start the vitamin D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 And, given your past experience, the numbered files in the ClusterBuster Files section might be of interest to you. Maybe look at the "Triggers" document when you're over there. There's lots more, of course, but I think those might be the current highlights for you. Ask anything, any time.
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Hiya...welcome!...glad ya found us....and YUP....the key to education is reading....see one A. Lincoln.... Best, Jon
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Just found you guys, never knew this existed... got a TON of reading to do. Anyways, I'm a legacy, Uncle has them too. Mine aren't as bad, maybe all the LSD I did as a kid? haha they still suck. First was back in 2000, then next was about 04 I believe. Been pretty regular over the past 10 years or so. Never found a treatment that works but recently started Verapamil so we shall see. It really knocks me on my rear, probably because I have low- normal BP. Thanks to everyone for sharing their stories and thoughts.
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That would make sense. The system likely has limits of how much total data you can upload. My guess this is a determination made but system constraints or, more likely, the cost of server space. My guess is this is at the admins discretion but may not be individually adjustable. A general widening of limits may be a concern regarding cost etc. In looking at how forums and facebook work it is very inefficient for longitudinal deployment of information. You either have to "pin" info or have it tucked away in the files sections. It would be nice if there was "mandatory reading" of curated material to avoid "asked and answered" repetition. This forum is far superior to something like FB which Edit: After running through this site I must amend some of what I wrote. The necessary info is well collected and pinned in pertinent discussions. Folks just have to have the motivation to read. They should.
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That would make sense. The system likely has limits of how much total data you can upload. My guess this is a determination made but system constraints or, more likely, the cost of server space. My guess is this is at the admins discretion but may not be individually adjustable. A general widening of limits may be a concern regarding cost etc. In looking at how forums and facebook work it is very inefficient for longitudinal deployment of information. You either have to "pin" info or have it tucked away in the files sections. It would be nice if there was "mandatory reading" of curated material to avoid "asked and answered" repetition. This forum is far superior to something like FB which is mostly a support group. Clusterbusters is more of an information clearing house.
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Okay, so this has been making me pretty nuts. I guess at this point I'm asking whether there's an admin who can help me out . . . I have an idea what's going on, but no way to correct it. I'm working an a PC (not phone or tablet). Using my standard Microsoft Edge browser, I see none of the things either of you (Pebbles and spiny) mention. Using Google Chrome, I DO see them. HOWEVER, I still get no attachment or paperclip option. So, trying everything I could think of, I clicked the down arrow next to my username at the very top right of the page. One of the items on the dropdown menu there is "Attachments"(!!) Things I have previously attached are there, going back to 2013 (nothing more recent than 2014), along with a message saying "You have used 569.07 kB of your 500 kB attachment limit." So I suppose that must be why I get no in-post attachment options today -- because I used all my attachment space up in 2013 and 2014. This seems bizarre, but I can't fix it, unless maybe I go back to those '13 and '14 posts and delete them.
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I think it might be the device. If using an ipad or phone it doesnt seem to work. I am responding from a pc.
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CHF -See the 'edit' option in a post - Quote Edit Options right next to the + box? Click edit and then add apparently. With this not yet posted, I see a paperclip and Drag files........ Once posted, I get the other options.
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Thank you! The only thing I see in the lower left here is the "Notify me of replies" checkbox. Gonna see what happens if I send this and then "edit" it. (Nope. Maybe it's my operating system or something.)
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Clusterbusters is pleased to offer travel scholarships for our 13th Annual Patient Conference. If you need assistance in order to attend this exciting, educational, and life-changing event, please consider applying. We won't be able to accommodate everyone, but we will do our best to help as many as possible. If you have the means, please consider donating to our scholarship fund. https://clusterbusters.org/donate/ Thank you. http://survey.constantcontact.com/survey/a07efb7msxfjg3r03rv/start
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In the edit box that I am now typing in you find a paperclip icon in the lower left corner. You can drag a file from your desktop into the box or click choose files and pick from the file explorer window with a double click. The file limit size is 0.23 MB which is pretty compact.
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Hey Jerry! I'll shoot him an email and ask that he PM you and copy me as I also have that problem! DD
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Can anyone tell me how to attach a PDF or other document to a post? Pebbles' has done that lately, but when I go to the "Insert other media" item, I just get run around in circles, and I don't see any other place to go to try to do it. Thank you!
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I second this.....come prepared!!
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Clusterbusters is happy to share this letter from Representative Andy Harris regarding our work in attempting to get CMS to change their decision regarding oxygen coverage for Medicare and Medicaid patients. We believe this letter moves us much closer to achieving our goals in this endeavor. We will keep everyone posted. This letter is the result of years of hard work by many dedicated advocates. bit.ly/2EJnRfK One major factor in getting this across the finish line is the data being collected in our survey that can be found here:https://westga.co1.qualtrics.com/jfe/form/SV_cG8Ym1FW8fgs44t If you haven't yet filled it out, there is still time as the survey closes on the 20th of April. If you are over 65 years of age and have used oxygen to treat your clusters, your data is even more important. Please take the time if you can.
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As for altitude, there's actually a thread about this from several years ago that might give some hope and guidance. We also have a regional support group in Denver that may be able to offer some tips and advice. Also, while we hope that you won't need it, oxygen will be available at the conference for everyone. Please bring a regulator, mask, wrench, and whatever else you use as we will just be supplying the tanks. Please bring your items even if you are not in cycle just to be on the safe side. https://clusterbusters.org/forums/topic/577-altitude-effects/
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Unfortunately at this time there is not a streaming option and we do not foresee adding one in the future. We may make some of the presentations available after the conference, but due to the need to keep the conference private and protected for all attendees, we don't allow live streaming or video recording in the conference space other than for official purposes.
