Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 09/22/2019 in Posts

  1. 6 points
    spiny

    2019 Conference how is/was it?

    It was my first conference. Amazing!!!! It was a joy to meet so many members after all these years. Having the opportunity to talk to new people was terrific. It was super special to be able to talk to them in person and perhaps provide a bit of new information. It was a lot of information to absorb over two days! I was more than shocked to have some people come up to me and say " I know you spiny!!!!' Yes, I finally came off my mountain! Shadowed a bit for a day, but otherwise, I had no issues with a cycle starting there or when I got home. Many thanks to Bob for making this happen! And thanks for pushing me to go!
  2. 5 points
    VocTeacher

    Thank You

    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
  3. 5 points
    Txfire

    2019 Conference how is/was it?

    This was my first year. 21 years I’ve felt alone in this battle. This year reached one of the lowest points and decided I needed to go. Left with a renewed hope and lots of information. Above all though, after 21 yrs... not alone in this anymore. I can’t put into words the freedom that comes with that. Thank you to all who spent countless hours teaching me, listening to me, and genuinely showing concern. I’m sure to be back next year in Chicago Ben
  4. 4 points
    Dana129

    Life Update

    Another update: still pain free, attended a birthday party and got absolutely shit faced with no sign of a shadow, life is great
  5. 4 points
    Home safe!! Another phenomenal conference, we are so blessed by Bob, Eileen and and the many volunteers who tireless efforts give our tribe the opportunity to gather like this every year!! It was so very cool to meet sooo many 1st timers who are relatively new comers in this community!. Its amazing how much this thing has grown since my first in Portland 2009! The agenda has become so full of speakers that we need 1 more conference day so it's not quite as busy and we have more time to socialize! I'll post later about the highlights but for now I'm about to go lay on the bed and inspect the back of my eyelids for a couple hours!! DD
  6. 4 points
    Not many people understand us, but when you're emersed in an environment where so many people "get it" - it's a truly special experience. It's like my family grew exponentially overnight. I can't wait to see everyone again in 2020. Thank you so much!
  7. 3 points
    FunTimes

    New to Clusters

    Welcome to the site! You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you.
  8. 3 points
    Dana129

    Life Update

    Thanks BOF, thinking about it gets me a little bit teary, I thank God every day this place exists, and that I was born in a time where cluster headache sufferers have the knowledge we have now, without that I’d never be at this point, realistically, to be blunt, I don’t think I would’ve lived past 30 with how clusters were affecting my life, then I found this place, I owe everything to this forum
  9. 3 points
    That is good that you now have a company that will supply you with oxygen. Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers. With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. Bottom line is get to know your delivery person and figure out how to work the system to your advantage. You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance.
  10. 3 points
    Willy

    New to the group and suffering

    Update: @Batch @Dallas Denny @Brain on fire @Dan32 @xBoss @Freud Thank you all to reaching out to me, It means a lot. I followed the Anti-Inflammatory Vitamin D3 regimen and just completed the loading period. It has been very successful for me so far. I hope you are all doing well.
  11. 3 points
    CHChris

    No medication

    If you can afford it, you should definitely try to get oxygen. I recommend either welding oxygen or aviator oxygen. The benefit of aviator is that it is "breathing grade" and does not require a prescription. I only add this because I have gotten some flack from my welding supply store for the amount of O2 I use. They know I am not doing that much cutting and they question me. I made this worse by trying to fill my medical tanks as well (because I had a prescription but O2 is not covered by my insurance), and they will refuse to sell to me if they know I am breathing it. So I get aviator oxygen and they don't complain. It is the same price as welding O2 and probably a quarter the cost of medical oxygen if you pay out of pocket. Keep in mind that welding oxygen is just as good as "breathing grade" oxygen, and these companies only refuse the sale due to liability concerns. Clovis also makes a good point. Many doctors (mine included) will not prescribe oxygen when they know insurance won't cover it. Don't let them do that. Paying for it is your responsibility and never let a doctor shut down an avenue of treatment for this condition because insurance won't cover it. (Especially when it is the most effective treatment available.) Regarding the medications: I am chronic and all of the stuff I was prescribed for a long time had no helpful effects. In that regard I would say I had "no medication." I did, however, have imitrex tablets, which could still be considered "no medication" as they absolutely suck for clusters. The advice I was given from a fellow clusterhead regarding prednisone was that if it stops working you need a higher dose. For example, if it stopped working at 30mg, then you would go back up to 50mg and taper back down. Of course, prednisone is only a transitional therapy until some other medication can take effect. I have been warned by many clusterheads not to take a lot of prednisone because of the cumulative side effects. But for a while, until it stopped working, prednisone was a blessing. Now I know them as "the devil's tic-tacs." @81007 For me, oxygen works almost as fast as an imitrex injection, which is way faster than the pills. But waiting until a full blown attack to take a slow acting drug seems like prolonging the agony to me. If you get shadows before your full blown attack, my recommendation would be to take the pill at the onset and not wait, but injections are better. I only use imitrex as a last resort (aka when oxygen is not available).
  12. 3 points
    A great big thank you you to everyone whose efforts brought this year’s conference into existence, and to all the attendees, whether I met you or not. Suffering from such a rare, isolated, and isolating affliction, it was heart lifting for me to see a tribe of us all together. I can’t thank all those of you who were fun to meet and those who were helpful...nonetheless, it was great to finally meet IRL among many others @Psiloscribe @Freud @dmlonghorn @Batch @Dallas Denny and our fabulous enlightened First Presenter. (I lust after the phone case.) love to all Into Light
  13. 2 points
    Pebblesthecorgi

    Ketamine Infusion

    The role of ketamine is still pretty ill defined. I do not believe there is an established role or treatment protocol for ketamine. Most of the treatment options are case reports and individual reports. Because ketamine is “legal” and available it should be easier to study but because it can be a profit center infusion clinics are popping up with their own protocols mostly to treat depression and anxiety. Cluster headaches are largely a side business. Until there is a study (s) to demonstrate effectiveness the intervention is hit or miss ( experimental)
  14. 2 points
    kat_92

    My first O2 tank!!

    Hey all I’m so excited to update that I FINALLY got an oxygen tank! What a mission. The delivery guy is super nice and said most of his deliveries are for people with clusters. He also gave me 4 non rebreather masks for free Hope everyone is well today Kat
  15. 2 points
    Siegfried, you do what you have to do. If you can't take Verap, then you can't. I would definitely work on the D3 aspect before I took any Lithium. It is safe and Lithium is a mess in the making for many. I turned it down flat when it was suggested years ago.
  16. 2 points
    Racer1_NC

    My first O2 tank!!

    Good deal! Those masks he gave you while better than nothing, are not the best for our use. Order the Cluster O2 kit if you haven't already. http://www.clusterheadaches.com/ccp8/
  17. 2 points
    Brain on fire

    Life Update

    Dana that is so good to read. I recall when you were really struggling. I couldn't be happier for you... Wait, maybe I can.... We'll see on your next update
  18. 2 points
    kat', closer to four hours, I would think. An M tank holds about 3500 liters. 3500/15 = ~230 minutes of O2. But some people do find that when the tank gets lower in O2, the abort is less effective. I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2. You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).
  19. 2 points
    Hang in there @kat_92! I could not access medical oxygen s went the welder's route last week through praxair in my neighborhood. To be honest, when i had all the gear i wasn't really sure what i was doing with it all. But with a wrench and special adapter that fits the regulator and hose, I'm all set now. With the exception of a brutal CH last night, i believe it is def helping.
  20. 2 points
    ..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this." ...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"... "If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? " ...YUP...nobody cares what flow you actually use...regulators go from 0 up... "I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" ...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up... ….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV... Best Jonathan .
  21. 2 points
    ex_spud

    2019 Conference how is/was it?

    Thank you to all that made the conference happen, and all that attended. It was my first one, but won't be my last. So much great information that it can't all be consumed in one weekend. To meet (in person) so many of the people that together pulled me from the abyss 3 years ago was overwhelming. I've never choked back so many tears, time after time. I do have one question regarding the venue, did everyone's reading room have the same deluxe lighting as mine did? Ed
  22. 2 points
    clovis fick

    No medication

    As for Oxygen, you just need a Rx. Ask Dr. for it and a good respiratory/medical supply place and pay out of pocket, its super cheap ( mine are 7 bucks a tank, good for 4 headaches)..It is so worth it.
  23. 2 points
    CHfather

    No medication

    I'm not sure I'm following the significance of this question, and I'm not sure I completely understand the posts because they seem odd to me. To answer the fundamental question, my daughter has been through many years of cycles with no medications at all. She has never used verapamil or steroids, and she has maybe used triptans five times in the fifteen years. For a long time, she didn't have oxygen. A lot of people believe that such-and-such medication, usually Imitrex (an injectable triptan), makes cycles worse. My daughter's cycles got worse over time, just like it happens for almost everyone, even when she was using nothing. I am not a believer that meds/no meds makes any substantial difference, unless they are overused. She's doing okay now with the full D3 regimen and high-flow oxygen supplemented by caffeine. (The story of why she didn't have O2 for many years is a typical story of idiot doctors not giving a crap and the patient not knowing any better.) To endure CH without oxygen seems crazy to me. If you can't get a prescription, you can do what many many people with CH do -- set up a system using welding oxygen. To not do the full D3 regimen (not just "D3 and magnesium way more than normal") also makes no sense to me. What I know about treating CH pharmaceutically and otherwise, including links to the full D3 regimen and info about welding O2, is here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  24. 2 points
    spiny

    No medication

    Hi 81007 and LKD06. And welcome to you both. I am at a loss why pills are being prescribed for clusters? They take too long to work for most people. If you get the injections you get much faster relief and you can take less than the standard auto-injector dose by monkeying with the stupid pen. Vials are much better. I don't think you are making a mistake in avoiding the meds if you can LKD06. There are other options that can help you. The D3 Regimen, energy drinks, etc. Sorry, I am not up to speed on your history. This community is working to solve the issue of no O2 for Medicaid or Medicare. There is a meeting in DC to bug the government to fix this horrible injustice. We call it Headache on the Hill. ATB
  25. 2 points
    Quick update before I pass out!! Great turnout with many new faces!! Had an awesome time at the Presidents reception! I spoke to one of the clusterbusters board of directors (and official conference photographer) this evening and she will submit all of her photos to our Website person so she can make them available to the forum!! And, the film crew isn't coming til tomorrow so they'll actually be filming one of the grow demos that will be included in an upcoming clusterbusters documentary!! Tim made it already and 2 other folks gave up on getting out of the airport, took an uber to greyhound and are on a bus headed this way! And had the pleasure of meeting Freud and FunTimes......but theres severals that I haven't met yet although I know they're here! Looks like we'll easily top 200 attendees....don't think it will break the record but it's a long way from the 40ish bunch of us in 2010!! G'nite ya'll
×