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Showing content with the highest reputation on 11/29/2018 in all areas

  1. I think you are having slapbacks due to not fully aborting the attack. I had the same experience when I started using oxygen. I would get hit at night, 10 to 15 min on O2, and back to bed. Repeat every 90 minutes all night. This is not my usual pattern, I get hit at night, but usually only once or twice a night. This went on for a few weeks, and I thought maybe O2 didn't work for me. I was even starting to think O2 was making things worse. I was experiencing slapbacks because I hadn't fully aborted the hit, even though I was pain free after a few minutes on O2. I bought the special Cluster mask, which was well worth the $25. I increased my flow rate from 15 to 25 LPM and increased the time to 15-20 minutes and then the 5-10 minute cool down (10-15lpm) at the end. I am not an expert by any means, but I would recommend increasing the flow rate. Sometimes I get worried about my oxygen supply and cut back the flow rate to conserve, and I regret it every time. I can abort with 15lpm, but I sometimes end up back on the O2. I have a gigantic H tank at home (the O2 delivery guy hates me) and an E tank for the car. I never play with the low flow rates anymore (always 25LPM) on the E tank because I am at work and have a fear of running out of O2. I might use more O2 the first time, but I only need one trip to the parking lot. I understand your desire to conserve oxygen. My insurance won't cover it, and it can get expensive. You might want to look into welding oxygen. It is the same quality as medical oxygen, but comes in a different tank and is usually cheaper. I have used welding oxygen in the past, and would not hesitate to use it again. Also, that big H tank of medical oxygen actually comes in a welding tank that is painted green. Another idea I could suggest would be supplementing the O2 with an energy drink containing caffeine and taurine. This has helped me abort daytime attacks. However, I haven't tried it at night. I have read from others on this board that they can drink an energy drink during a night hit and still go back to sleep. Above all, I would recommend not giving up on oxygen. Increase the flow rate and try to find an alternate (cheaper) supply. You have proven you can get pain relief from oxygen, now you just have to dial it in to prevent the slapbacks. You should get bigger tanks, too. Those E tanks are awesome for the car or travel, but the big boys are best for the house. My oxygen delivery company actually charges me the same price for the H tank as the E tank (which makes no sense to me, but works out in my favor). Congratulations on kicking out the triptans. I did that a few months ago and have felt much better. I can't prove it yet, but I think it has reduced the number of attacks I get. Also, congrats on kicking the topamax, the worst drug I have ever taken. I'm glad it didn't help me, because the side effects were insane. It would have been a hard choice if it actually helped.
    3 points
  2. Antibiotics are a necessary evil when treating significant bacterial infections. They do nothing for viral infections. That's where a healthy immune system comes into play as that's how the body fights off viral infections. Again, there are no pharmaceutical silver bullets for viral infections. The best response to a course of antibiotics is to start at least a month long course of probiotics to rebuild and recolonize the friendly bacteria in the GI tract called the microbiome that were destroyed by antibiotics. This is an important course of action as the majority of our immune system centers around the GI tract. A healthy microbiome helps ensure a healthy immune system. Vitamin D3 and Omega-3 fish oil also help build a healthy microbiome and immune system. Take care, V/R, Batch
    2 points
  3. ...un piccolo mala testa (small bad head)...I would suspect every clusterhead has a slightly different definition...mine would be a hit (yes, it's STILL a hit) less than 2 on a scale of 10...am totally functional but know it's there and MAY lead to somethin' worse. what some clusterheads call a "shadow" would be called a bad headache by civilians....but then we are jaded....
    2 points
  4. BrainOnFire, A shadow is usually what we call a very small hit, or often it's just a bad feeling. It could be your head doesn't feel right, you feel off almost like you're having a CH attack, but there's no pain. There's lots of ways people describe it, but it's basically any bad feeling we have related to (or caused by) our CH short of a full blown attack. J
    1 point
  5. Dan.....anything smaller than an E tank is a waste of time and effort. See chart at this link: https://www.bing.com/images/search?q=o2+tank+sizes+chart&qpvt=o2+tank+sizes+chart&FORM=IGRE Don't they deliver? That's usually how O2 shops operate.....I got get 6 e's and/or 2 M60's at a time (picked up myself but was convenient)...
    1 point
  6. Hi Dan, Also have not heard of or experienced O2 making things worse...suspect it's your cycle ramping up. You are doing exactly the right thing by staying on for a few mins after the hit subsides. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 5-8)...but back again in an hour. What I did was (guessing here) learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breath-breath-breath-breath. Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life. Hoping someone with far more expertise in O2 checks in here...it's a good question others may benefit from.... What size O2 tank are you using? An e-tank would last me 1-3 days... so I BADGERED the local Lincare supplier to stock M60 tanks (needs a different regulator). About 3 times the volume so 3 times the lasting power. Heavier but not enough to dissuade... as they have a really neat handle that makes sclepping easier than an e without a cart! No idea if the tapering off Dopeymax has any effect either way...it never made any difference for me.... beyond the worst side effects of any med I ever took. Look forward to the brain fog lifting and best wishes on the busting...you're in the right place for that. Best Jon
    1 point
  7. I have only been here for a year but I’ve never heard of O2 making things worse. It’s probably coincidence. Or related to the taper if I had to guess. Stay strong. Busting saved me.
    1 point
  8. Hi Stev! Welcome to the nut house...err, uh...community I mean! I've enlightened several docs over the past 9 years of busting.....one lady doc didn't even want to hear it once I got to mushrooms.....a couple listened but weren't on board....and 3 were very receptive to the idea and 2 of those 3 actually asked for the website! The best was an eye doc a couple years back.....I had listed clusters on my new patient paper work.... they called me and as we were walking back to the testing room he asked me if I was in cycle or remission?? Knowing that he had at least some knowledge of CH, I talked for a good 20 minutes about busting, clusterbusters, and how it had changed my life.....dude never tried to cut me off or hurry me up and was genuinely interested even asking for the cb website!! When I went back in to pick up my specs a few days later, he did the fitting and told me that he had perused the site and that he would be mentioning it to his other clusterhead patients!! And to top it all off, he was an old jarhead chopper jockey in Nam about the same time I was in country with the 1st Marine Air Wing!! Dallas Denny
    1 point
  9. ...I resemble that remark (in more ways than one)...hottest shower on the head I can stand....know of another who alternates hottest/coldest (he likes a frozen bag o' peas...…..)
    1 point
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