Mjedwards409
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Posts posted by Mjedwards409
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2 hours ago, CHfather said:
A sight that is both joyful and sad at the same time. Good going!
Does she have the little open holes in her mask (if it's a standard non-rebreather) covered so no outside air gets in when she's inhaling? I'm sure you also know that if 15lpm isn't enough (so that she doesn't have to wait for the bag to re-fill before she inhales), you can get a welding reg for $30-$40 at amazon.
Do you have a cart for moving that thing around?
Appreciate the note. Yeah we have the clusterkit mask so she’s good there. 15lpm seems to do the trick for most hits. She’s had a few stubborn ones that take a bit longer but the O2 place is 30 mins away so we’re trying to also consider sucking it all up too fast. We’re going to play around with it. We’ve used medical O2 for a bit so we’re used to the process. No cart but 99% of the hits are nocturnal so it just sits right beside the bed.
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Went to one of the major chains. Mission accomplished. They cared not one iota about what I was using it for. And laughed when they corrected me for trying to grab a nitrogen cylinder lol
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Thanks @Dallas Denny and @Rod H.
I surely won’t tell them it’s for breathing but I hope they don’t dig too much because I don’t “speak welding” lol.
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My wife (the sufferer) and I moved from Atlanta to South Carolina 2 years ago. She’s two weeks into her first cycle since 2019. We had two big M medical tanks full from her last cycle plus Clusterkit mask so she’s been able to manage. First tank is virtually empty, about to switch to second.
Having a hell of a time getting an updated O2 prescription. Even if we did no one around us will refill her medical tanks, and we’ve called every medical O2 place within 100 miles and the largest they have is E tanks.
Thinking about making the move to welders O2.
Had two questions which I THINK I know the answers to from searching, but just want to make sure.
- Will the regulator (pictured) work on a welding tank if it’s currently on an M size medical tank? (Label of tank actually says MM)
- I know welding tanks are in CF instead of labeled with letters. What’s the most comparable to an M tank? Just looking at some charts i’m guessing 125 CF or so?
Thanks in advance!
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Thanks guys!! She's now hit a week after prednisone with no CH. She flew yesterday to Denver (high altitude) with no headaches on the plane, and no headaches overnight. I know you can never say never with these but really hoping the cycle is done.
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As posted in another thread, my wife started the 3rd cluster of her lifetime the first week of May. In 2014 her cluster lasted 5-6 weeks, in 2015 2 weeks, and she's currently in the 5th week since this one started. (The other two were in late June/early July, so the May cycle is a first). For the first weeks of this cycle it was consistently a single Kip 6-8 once per night, each night between 2AM and 4AM. She went on a prednisone taper the 3rd week of 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days. She was CH free the first day of the prednisone, and currently she's 5 days past her last pred dose with no CH at all since she stopped. (Good sign). She started taking Verapamil ER (I know, not the preferred formula) at 120mg for the first few days of the pred taper and increased to 240mg which she's been on since. She's also been on the D3 regimen since day 2 of the entire cycle and hasn't missed a day. Did the 12 day accelerated loading and is still taking 20K IUs per day.
The fact that she still hasn't had the CH come back 5 days after the low dose pred taper ended seems like great news. That said, she been having what may be shadows, or just bad tension headaches every morning upon waking, which go away with coffee, water and advil each morning. Then she usually gets another one of these same headaches early afternoon, which also go away with the same treatment. These definitely aren't severe compared to the CH, but are still very much bothering her. She describes the pain as either whole head, or one sided, interestingly enough on the opposite side of where her CH were this cycle.
We're kind of in a holding pattern, as it seems like 1 of 3 things is happening:
1) The cycle is ending naturally, and the verapamil is causing these tension headaches as a side effect.
2) The cycle is ending naturally with shadows marking the end of her cycle, and the verapamil/D3 aren't changing anything at all.
3) The Verapamil and D3 are helping by slowing down her daily CH to only a few manageable shadows per day.
We are about to go out of town for a week, and she has an appointment with her neurologist when we get back. Our plan now is to not change anything, as the current situation is absolutely manageable and we don't want to risk changing something and revamping the cluster. Is that also what you all would recommend? She's still too new to this disease to know exactly what her patterns are. She hasn't been brave enough to try the beer test, but we did try one other test involving an activity that's normally a trigger for her, and she passed that. :-) Any feedback is appreciated!
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Thanks all. On the note about my wife....weird night. It was her first night off of the prednisone fully. It was 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days and she was completely PF the entire time so we were hoping the Verapamil and D3 were making a measurable difference since it was a relatively small pred dose. First night off she woke up at the same time with what I guess was a bad shadow, (not as piercing, probably a 5 pain level), but the shadow was on the opposite side of her head as the other headaches this cycle and lingered well into the morning. So strange. She eventually got back to sleep. Hoping and praying this is the cycle starting to break up, as she's on week 4 and her first (and longest cycle) lasted 5 weeks.
But, as I'm learning from all of you, the only thing we can predict is unpredictability!
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Thanks Freud. Yes I've done a ton of research on all of the options. (I've read all the stickies and probably gone 4-5 pages back on every section of the forum) Her first two cycles she never had more than 1-2 CH's per day, and both were less than 5 weeks. (Her latest cycle was 2015 before this one which she was able to cut to 2 weeks with the D3) She was only properly diagnosed this time around and she's trying some of the common pharma solutions. She's certainly open to the alternative therapies if this cycle proves to be longer/more stubborn than the first two. We were able to get medical O2 prescribed and got a few M-tanks for a surprisingly good deal considering insurance won't cover it.
She just got off a 2 week pred taper yesterday and she's been on 240mg of daily Verapamil since the day she started the pred. Super low I know and they gave her the ER and it wasn't until afterwards I read how immediate release works better. :-( She's been PF since the pred started but we both know that means nothing - her first cycle the pain came right back after the prednisone was done so we're under no illusion she's out of the woods. That said, she's also done the full D3 loading so we're praying that either the HA's will stay gone this time around or be reduced in severity that they can be easily controlled by the O2.
Long story short we're open to the other methods but she wants to try some of the more traditional methods first.
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Supporter here for my wife who is going through her 3rd cluster. A former coworker of mine who has since retired battled CH for nearly 30 years. He's in his late 60's and has been in remission for nearly 6 years and is now living his retirement dream golfing and fishing in Florida. He started the D3 regimen back in 2014 before his fall cycle started (amongst other things) and was able to drop all of his CH meds. He was always episodic with his clusters in September and October.
I called him two weeks ago to let him know that my wife was back in cycle and to get his advice on a few things, including Verapamil which he used to take. That night, after 6 years, my buddy had a CH and has had it nightly since. He has never had a CH outside of Sep-Oct in his life, and after a 6 year remission he starts getting hit the day I called him and brought up CH. This is amazing to me. (In a negative way) It makes you wonder just how powerful the mind and subconscious may be when it comes to pain, illness, etc. Is it more likely this is just a terrible, terrible coincidence? Luckily the CH's have only been once per night, and according to him haven't gotten over a 5-6 since they started. To my surprise, he had never tried Oxygen in his life before I brought it up to him, and he was able to obtain an E-Tank from a friend in the medical profession and has been aborting in 5-10 minutes. (So if nothing else good comes out of this, now he can proactively get Oxygen before his future cycles knowing it will work)
EDIT: I hope it goes without saying, but this is not to say that I'm suggesting the pain is somehow all in one's mind. After seeing my wife (who has an extremely high pain threshold) go through these, I have zero doubts that nothing we humans feel can compare to CH. My only curiosity being thoughts and theories on the mind being able to trigger the beast.
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When I called around trying to find O2 here in Atlanta for my wife, had 4 straight providers deny her service even when we had the prescription and I offered to pay out of pocket, pick it up, etc. Multiple providers said verbatim “we don’t service people with CH, prescription or not”. On the 5th try I finally had a manager agree to provide on the basis that I paid out of pocket and I picked up from their location.
The prescription stated CH so I couldn’t really hide what it was for.
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I’m my time floating around CH.com and joining here, it seems like there are a lot of Australian CH sufferers in proportion to some other nationalities. Am I imagining that or does anyone have any theories as to why that may be? My wife whom was just diagnosed is half Australian on her mother’s side so it was a curious observation.
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Thanks so much all for the supportive yet honest words. I have to remind myself to take it one day at a time, for the sake of my wife. God I hope the find a cure for these bastards someday...
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Quick background - my wife has CH and was officially diagnosed this time around after being told in 2014 and 2015 that they were migraines because she was a woman.
Her cycle started at the beginning of May after a 4 year hiatus. Her CH are consistently 1-2 at night, generally 1, and rarely during the day. Obviously I'm well aware that these things can and do change for anyone that gets CH. That said, I am the "nervous Nelly" of our family, and I often over-research, over-analyze, and over-worry about everything. (Maybe I should try "busting" my anxiety? 
). That said, I've been making sure I don't let my anxiety and worry over my wife's CH show to her.
Through all of my research, reading of forums, etc. I'm wondering if my view on CH's is consistently the "worst case scenario". Though my wife's cycle has never produced more than 1-2 HA's in a single day, never gone more than a few weeks, has responded to the D3 regimen in the past, responds to O2, etc., all I can dread is that these things will eventually turn chronic and be resistant to all therapies. When I really stop to think about it, there are likely thousands of episodic CH sufferers that only get hit once per year, once every few years, get a few CH per day, etc that never even bother to register for a forum or post. Would you all agree/disagree with that? Am I always thinking about worst case scenario because I'm actively seeking it out? (P.S. - I realize my thought process is completely counterproductive, but I'm almost posting this as an outlet for these building thoughts because I am keeping a positive face in front of my wife at all times. I'm also the type of guy that deals with his fear of flying by researching flight safety statistics every day for 2-3 weeks before a flight, and I know that's not productive either.
)
Side note on treatments:
I've been on CH.com since 2014 and my wife is on day 15 of the D3 regimen including the advanced loading. (Batch has been such a huge help here) We have two M tanks of oxygen with the 15 LPM regulator and Clusterkit mask. She's currently on a light (30mg - 20mg - 10mg) 13 day prednisone taper while Verapamil is tapered up to 240mg over two weeks. (Her first time ever taking it). Currently she has been PF for 4 days/nights, but we're aware that's likely due to the pred taper. (But cautiously optimistic because I know 30mg is low so hoping D3 might be contributing as well.) She had an MRI both in 2014 and last week, both came back clear.
Sorry for the rant and I guess whiny first post. Frankly I'm just an anxious guy that's incredibly worried for his wife. I will say as an outsider that has seen these attacks in person, and read hundreds of your stories, I pray daily for a cure to this disease and I am in awe of the courage you all display on a daily basis.
2 Welding O2 Questions
in General Board
Posted
Linde. $450 after tax then $20 exchanges. Rip-off i’m sure but was the last place open yesterday and medical O2 was going to run out overnight.