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ClusterBusters

fireface

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Everything posted by fireface

  1. fireface

    Gamacore

    Yes, I'm episodic. About 2 months into a cycle. I just got off the phone with Gamma core and ordered it. I figured it was worth a shot even for $600. They said refills are still $600. I go through a lot of o2 that I pay for out of pocket, so if this thing works I'll save on O2. For some reason, I don't have high hopes. Been disappointed so many times with all the drugs they prescribe. O2 is my best friend right now. That was very nice of you to offer that device. I hope it works for who ever got it.
  2. fireface

    Gamacore

    Damn... I would have taken it. I just got a prescription sent to gamma core for a device. They said Medicare doesn't cover it and free trials are not offered to Medicare insured. They want $600 for a month. I'm really on the fence with this one. I'd pay the $600 if I knew it worked, but I'd be highly pissed of it didn't. I'm two weeks into an Aimovig shot and so far it hasn't done jack shit. Bummer. Missed opportunity.
  3. fireface

    strange changes to my clusters

    I was just out on a months vacation and took a concentrator that put out 10 LPM @ 85 % o2. It did abort for me. Took a little longer than a tank.. maybe 15 mins., but it worked. Take your O2ptimask that makes all the difference. I also had an M tank in the car in case I needed it driving.. which I did several times. Like Funtimes said, if you fly to a resort it's very easy to have tanks delivered. FunTimes... Thanks for the info on the cruise. I have one scheduled for May. I should be over this cycle by then, but if not it's nice to know I can have tanks on a cruise.
  4. fireface

    Traveling with CH

    For those of you that are anxious or even cancel vacations because of CH.. as I was for years... Here is some reassuring info that I've found out. If you have an O2 prescription.. an oxygen supply company in the area you'll be in will deliver a tank right to your resort. I've done it several times in several states and it is really hassle free. Cost has been very reasonable, also. One supply company didn't have big M or H tanks so they sent out an O2 concentrator that put out 10 LPM. Take your O2ptimask. I can get by with 10 LPM. I'm headed out tomorow for a months vacation and have tanks lined up at all the different resorts. Hope this helps someone.
  5. fireface

    Interesting sleep/CH research

    I'm not sure what the test was called. I went in in the evening and they hooked me up and wanted to monitor at least 6 hours of sleep. I believe this was the standard test for sleep apnea, but I figured they would catch my CH attack and progress would be made from there. Well, they caught my attacks but failed to focus in on that particular aspect. The summary did not even include the attacks. It basically just said I had a sleep disorder and I needed a CPAP. I find it very difficult to get medical personnel to cross that line into Cluster Headache. It's amazing how many so called Neurologists can't zero in on this condition. That was just one of about 6 Neurogists I've been to see and none of them can think outside the box. Grrrrrr..
  6. fireface

    Traveling with CH

    10 LPM max... and I think they rate that at only 85% oxygen. I got that for overnight stays in hotels until I get to where I'm going. It really is a pain to travel like this, but it is manageable.
  7. fireface

    Traveling with CH

    I went to my O2 supply office just the other day to get a concentrator. I had an attack start just as I got there. I asked the office lady to fire it up and I would try it right now. She only had a crummy little non-rebreather on it and it didn't do jack shit. Boy did they get an eyeful of a full blown KP-10 for 40 minutes. It was a bad one. She felt so bad for me, she gave me a M-3455 liter tank free just to have in the car. They all developed a new understanding of what CH is. Anyway, I've used it at home with my O2ptimask and it will abort an attack if I get to it quick enough. It takes longer.. 15-20 mins. sometimes... compared to my tanks at 15 LPM 5-10 mins. to abort.
  8. fireface

    Beast left for 4 days....but returned

    I did the prednisone burst at the start of a bad cycle and it killed it within 24 hours. It was a miracle. BUT... It returned 3 weeks later with a vengeance. Stay on it.
  9. fireface

    Interesting sleep/CH research

    I went in for a sleep study twice during a cluster cycle. I was so excited they had me hooked up to all these wires and twice a cluster triggered within the first hour of sleep.. which is common for me.. I saw on the raw data where as soon as I transitioned from stage 1 to stage 2 sleep the CH triggered. The Neurologist didn't even look at the raw data. The only thing she said was I had disrupted sleep and I needed a CPAP. I was so pissed. I was in the middle of one of my worst CH cycles and no shit I had disrupted sleep. Another disappointing dead end in figuring out a possible cause or treatment.
  10. fireface

    gammaCore device query

    Hmmm... I have to wonder why it is said to help episodic and not chronic. ???
  11. fireface

    gammaCore device query

    Well crap. Another dead end in a long line of disappointing attempts to find help. This neurological center in Michigan is supposed to be the Premire institute for CH treatment. They called back and I wasn't home. Told my wife it's a surgical procedure and they don't do that and blah, blah, blah. We know it's now a portable device, but they didn't. I would pay the $500 to get help. I've paid that much for O2 some months. This sucks.
  12. fireface

    gammaCore device query

    I just found out about this device and contacted my Neurologist. No word back yet. I was just in to see him a couple of days ago and he didn't say anything about it. I just started a horrible CH cycle and am willing to give this thing a try. In the meantime... O2 is my only friend.
  13. fireface

    Conference takeaways?

    I came away with many possibilities. First on my list is the D3 regimen. Batch gave a nice presentation on its effectiveness. I already contacted my GP to schedule baseline tests. Easy, cheap and it certainly can't hurt.....
  14. fireface

    Home from CB conference safe

    im good for a get together out on Cape Cod...
  15. fireface

    Is Prednisone making it worse? Please help :(

    I learned this weekend that Prednisone may have caused hip damage. After a horrendous cycle ... and several prednisone dose packs... my hips started to hurt and I didn't know why... Maybe now I do...
  16. fireface

    Why one side ?

    Didgens ..... I went to a neurologist that specialized in sleep disorders thinking since most ch's were triggered within the first hour of sleep she may have some insight as to the cause. I did two sleep studies and had attacks both times while I was all hooked up. I was totally disappointed when the neurologist came back and basically just said I had a sleep disorder ... Like, no crap... I was in the middle of the worst cycle of my life and this lady said I had a sleep disorder and it was unrelated to ch. she didn't even have the raw data captured during the attack... Just a summary. So, I got the raw data and saw both times just as I was transitioning from stage 1 sleep to stage 2 the attacks started. So, it was obvious to me that whatever the hypothalamus does during that shut down period was causing a problem. I know all of this doesn't explain anything other than I did a sleep study and got nowhere with it. I felt like they were just trying to push a Cpap. I'm currently in remission and sleep fine. Also, most of my attacks are on the left side, but I have had attacks on the right side and a few times both sides at the same time... Horrendous ... I went to the ER that time. The both sides attack lasted for over two hours. My inquiring mind would like to know why, also.
  17. fireface

    Paint as a trigger ?

    Thankfully, I've been PF for over 1 1/2 years... recently, I sprayed a project with a Lacquer paint and it seems to have triggered something... I wore a mask and tried to avoid fumes ... but, something happened... fairly minor... kip 3 or 4... anyone ever notice paint as a trigger ?
  18. fireface

    Paint as a trigger ?

    Not good... I just went from minor to major... I should have known better than to subject myself to a known trigger... I have some M leftover from last year... don't know if it's good or not... I'll give it a try...
  19. fireface

    This hypothalmagigy

    I see the Pituitary hosing the Hypothalamus to the point of disarrayed...
  20. fireface

    tonights the night

    Kyle, .. thanks for the tip of mixing with v8.. I'll try that next time.. I also get very nausea's and don't really care for the buzz. but, I'll do whatever it takes to stop it...
  21. fireface

    tonights the night

    Very nice job, Dan. Glad to see they showed the family support side... so important. BTW... sorry you lost out to George Clooney at the Golden Globes.. and get a clapper for that lamp ... Dave
  22. fireface

    Sorry to be back

    Hi, guys... I've been away PF since last May... A few shadows here and there , but nothing serious... Lately, It's ramped up a bit... Think I should spank it now with a dose... or wait until I know it's going bad ? Thanks.... Dave...
  23. fireface

    Sorry to be back

    Thanks... preparations are taking place.....
  24. fireface

    Heat trigger

    I've noticed the same thing...Scott... It's not a full blown attack ...and O2 usually takes care of it... but still ..Heat does bring it on...
  25. fireface

    Another suicide

    Cluster Headache... in the medical definition..is not considered life threatening... therefore... we will get no attention...
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