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ClusterBusters

Pcaola

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  1. Pcaola

    Describing CH to non-believers

    Thank you Fun Times. And others for steering me towards Penn, this cycle is soo all over the place. I just don’t know what to do. Between it “hopefully” coming up on the last 4 weeks of the cycle. Costs with a deductible based health insurance that changes June 1, and a possible wait list. Just have that “can’t win feeling”. But do know I’m going to need a good neuro for future , no matter what. BUT...on the topic of .. how do you describe CHs to non believers, co workers, other people. I recently switched careers and am working in a new place, new people, but all fellow EMTs who understand the Kip scale, migraines, etc and still only 1 has heard of Trigeminal Neuralgia ( because of a friend ). I decided (personally) I don’t like sounding like a whiner or a cry baby, even though “I” know there’s nothing “baby” about this. So when someone at work asks if I’m okay, or what’s up with me when my left eye is half closed or when I’m just beyond exhausted from no sleep. I ask them, can I text you a web link ? And I ask them for 5 minutes... just give me 5 minutes of your time, to read what I send you. USUALLY, about 10 minutes later, I get a genuine “Paul, my God....that’s horrible”. I feel like they at least got something, not from my mouth, but something they read and seems more real I guess. I keep 2 website pages saved on my phone browser for this. One is the clusterbuster explanation and another is from the Atlantic Magazine published in 2013 actually, but I liked the IMPACT of it. So far, the key has been just getting someone to give you the FIVE minutes. Some read 20 seconds and assume the rest LOL. Nothing I can do there. Does kinda do to show you sometimes.... who thinks you’re worth 5 minutes . Paul
  2. Pcaola

    oxygen

    It amazes me that conversations with providers can go from no, to yes in the subject of “coverage” when most of the time, actually just getting ANYONE to fill the script, cash, insurance, trading first born children or not, is impossible. Taking into account, said provider, gets paid at about 40%, their “cash/retail” billing rate when accepting an insurance payment; I’m wondering if they will still actually fill it? When researching O2 in the recent years, almost everything I have read about medical O2 has to do with certification, more than actual filtering. A friend of mine has actually seen commercial welding tanks filled At the same exact filling station as medical O2. It’s just invoiced differently. Do some reading. There are a lot of articles online about medical O2 vs welding O2 etc. Why and What the cost difference is; and the farce involved. Being an EMT for over 10 years and having access to O2 I have been VERY fortunate to volunteer or work at places to bring my tanks in over the years and get them topped off when In cycle. Medicare isn’t denying it out of ignorance. I used to use a LOT of O2 in cycle. Nonrebreather masks are unfortunately , Terribly inefficient at delivering high flow and conserving unwasted O2. I was going through a D bottle every other night. Getting your hands on a Demand valve or FROP valve is HUGE in getting seriously high low O2 and conserving your O2. Unfortunately , they are still expensive, and only work off of the higher priced regulators that have a high pressure, threaded valve. For a demand valve or CPAP. They won’t work on the Christmas tree plug. The bonus is... MOST EMS departments cant/don’t use demand valve/FROP devices at all anymore in EMS. Which is how I acquired mine a few years ago. Almost all EMS agencies use a bag valve mask with an O2 supply line. The FROP push button was found to be delivering too much pressure, too much volume, with the provider not being able to feel any resistance. So most agencies retired them years ago. Many are sitting in a back closet collecting dust. Useless to them, but almost like finding treasure to us. I have yet, to meet a fellow CH suffer in person. In acquaintance or passing. Which leads me to believe we are a rare crowd. It might be worth anyone who wants to try and get a demand /FROP valve to find a friend at their local EMS squad , or peak in , introduce your self, bring some literature, and just ask? If there is any chance of old ones just laying around. It might take a month of red tape, a monthly meeting, whatever. But I assure you. Having one is very much worth it once you get your O2. Sorry if I went a little sideways..... I hope the info helps someone, as always. Paul
  3. I am trying to get an idea if there is any common pattern to our CHs or is everyone’s CHs their own random circus? And maybe what someone else is doing might help me. Vice versa. I get the typical “alarm clock” CH about 40-90 minutes after I go to sleep. Does anyone else feel that .... Waking up , ASAP and getting UP and actually trying to wake up.... helps get the process started or sometimes even prevents the “ramp up” from getting too high? Sleeping upright, in a chair or recliner, helps reduce the intensity of their CH? Or help in the waking up ? And again.... less intensity ? Hot Coffee, Decaf, Regular, Tea. Helps on the roof of the mouth and back of the throat? No MAJOR gain here I know. I do a hot gel pack on my eye/sinus side that is on Fire. Yeah, hot on hot? I dunno why but it feels better than cold for me but willing to hear what works for others. O2 works if I get it early...sometimes... not always. But if it’s already ramped up? It doesn’t seem to help at all. Is it me ? If I think of a few more I’ll post.... curious to what others think of the habits and what works for them that I might try. PC
  4. Pcaola

    Best cheap demand valve?

    Brainstorm , Allied makes a LOT of products for the overall Medical field and we use quite a few “Allied” products on our Ambulances at work. Because they are inexpensive and reliable. Don’t get me wrong. There is better made stuff with higher price tags for sure.... but figure the Allied stuff we use is being used on an Ambulance, indoor/outdoor, varied weather conditions, dropped, washed used and sometimes abused. And it works LOL. For Home , one demand 100% high flow O2? In my opinion, I wouldn’t worry at all. PC
  5. Pcaola

    Describing CH to non-believers

    Freud. Just fast thoughts for the morning. Still going to try and get my apt today at the neurology/headache center. I have my list of questions for the doc to see if we are even remotely on the right path and how many CH patients she may be treating, methods, etc. The Jefferson Headache center across the bridge in Phila was one of my first choices. And luckily a VERY good friend works in the Jefferson system and can get me an escalated appointment. Not same day but probably not 5 month wait. But in all my reading about that center, I couldn’t find a specific CH positive review. But Tons of negative reviews that they really push their “in patient” 5 -7 day treatment. I was all excited for Jefferson Heacache center till I did my reading. I feel like we have hijacked the threads purpose now. I’ll start my own or pick one to jump one next. Thanks all
  6. Pcaola

    Describing CH to non-believers

    Thanks Freud. It was reading some of your posts that reminded me that I do not have it as bad as others. I honestly don’t know where I would be with no oxygen right now and at least knowing. I probably will break the cycle sooner or later. Since my last cycle 2.5 years ago , I see some improvements and research finally being done in CH. but even remember reading back then, that shrooms were becoming a go to option for many. I have been on the Vit D. And going to start the K,Magnesium and Fish Oil tomorrow and probably will see a new headache Nero tomorrow, mine seems to have disappeared. ( wasn’t great anyways ). I’ve been reading and will keep reading. I’ll check the link you suggested. I worry a little about the mushrooms due to Job issue. Nothing I’d want to try and explain on a pee test as an EMT in Atlantic City NJ. BUT bonus for unlimited O2 supply ! Wish me a little luck to find a somewhat educated doctor tomorrow. I’ll be in touch. You are a survivor x5 man. Whew
  7. Pcaola

    Describing CH to non-believers

    Thanks Freud. Even yeas into this, I find my emotional level just .... a mess this round. I do have friends trying to understand. My older boys have watched me do the “kicking dance with my head in between the back cushions”, trying to not upset them. Luckily they are older teens now and understand. But you are right. Just in watching some other videos and reading. I see and hear people who do have it even much worse than I. Thanks for reminding me of that too. I am sure I will be around a lot more often. And need to remind myself to do so. Both when in and out of cycle. Paul.
  8. Pcaola

    Describing CH to non-believers

    Thanks to all for great stuff to read. I share in all the frustrations. There is just NO WAY someone else will understand. Not just the pain level of CHs but the overall life disruption, wearing down, and eventually feeling just done. Nobody should have this much anxiety about going to BED. It’s 110% against the body’s natural instinct. To relax, unwind and recharge. To be in week 4 of a 12-15 week cycle. And just know, outright KNOW, that 45-90 minutes after I go to bed that I will wake up and have to fight the fight. In the past, the fight would wear me out and the Triptans would leave me like mush so I’d usually sleep till morning. But every cycle is different ! We know this. For me and those that just can’t catch a break. It’s like a “rinse and repeat” cycle at night. And to get up and go do my 12 hour shift as an EMT in a city? Yup, still getting it done but I can feel it wearing me down. Never getting more than 2-3 hours sleep in a row if lucky. I’ll be glad when they (hopefully) change the name from cluster headaches overall. Because a headache it is not. There is a difference between an asthma attack or bronchitis and having COPD or Emphysema so I’m sure it would be insulting to tell someone who suffers from COPD and CHF that I too have asthma Beyond the “pain” and the fight. Only the closest of family will even get a glimpse of what this does to us OVERALL. The depression, anxiety and pure exhaustion that comes with it. I was at work yesterday when I read through the thread and saw the post about Dans video ? I believe. So curious me just hops on you tube and finds it ( and plenty others). 30 seconds into the video I absolutely lost it ...at work. Thank goodness I was by myself on the picnic table for a few. For whatever reason, I rarely show any major emotion, but mid day, at work I completely LOST it and could not stop crying because I KNOW, I was THERE less than 7 hours ago, on my own couch. I haven’t slept in my bed in 4 weeks. I just refuse to sleep laying flat. I feel like it makes mine worse or it harder to wake up and fight the fight. But yesterday gave me my own glimpse into “how I really am doing “ I apologize for the long rant. I was just trying to express ,as others did, besides the “PAIN”, how the horrid condition is so life disruptive, mentally and emotionally exhausting and really can just wear us down to almost nothing. Paul CH diagnosed ( pretty much on my own, then found the right Neuro Doc ) 2010
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