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Looks like the welding o2 is the way to go in the US

Im sorry your finding it so hard to work . Im a transport manager for the biggest family run coach company in UK . We operate 165 coaches all over UK and europe ive struggled during this last CH cycle had to take a bit of time off work , but my boss is really understanding so im really lucky . I can't really give any advice as ive always been employed whilst suffering with this condition even when in military for 7 years

Holy crap this is my biggest fear moving!!! Have you tried Apria? I always make friends with the delivery drivers it’s been a life saver. At one time this winter I had 20m tanks at my house in case the storms were bad and they were busy. I tipped them randomly when we had something to give but they would still have done it for me reguardless. One guy bought me a fishing pole and waiters and told my mother he was getting me out of the damn house. We became friends, unfortunately he passed away this year. I get their Cell #s and txt them when I’m low. Fir a while when I called Apria would only let me get 3 m tanks at a time and they would have to deliver 2 times a week. So the drivers would bring 5 at a time. I’m using about half to a whole M tank a day right now and am crapping my pants after reading this. FL is almost as bad w COVID as TX.

Ohh and I’ve got my new Vit D on the way and a lvl tomorrow. Last lvl was 94. Not my target if 150 but at least it’s nit in the dumps.

PS my hat goes off to all you with kids/ families. I don’t know how you pull it off.

Sorry if this is a depressing topic or is triggering but how do you earn a living while dealing w no sleep and the beast striking at any time. Any suggestions appreciated. I used to be a physician assistant in heart surgery before bipolar and CCH struck. My certification has lapsed and that’s off the table for now. I have a huge gap in employment, don’t get call backs for medicine device sales/ support specialists jobs I’ve applied for (thought I’d never go to the dark side). Can’t focus to retake my boards, probably couldn’t get a license until I have a year of mental health stability (screwed myself trying to stay off blockers and busting). PTSD gets triggered then eventually manic. They would give me a ling acting drug w over a year elimination time so I waited it out then stopped my meds to bust. It was a vicious cycle but a risk I was willing to take. But not any more, this last go around I was sure all blockers had cleared my system and the busts showed no appreciable impact sadly and costed me a hospitalization. As well as lost me the intranasal nasal ketamine and almost oral. But doc knows how bad I suffer and didn’t cut me off. I only recently got to explain I was off my meds as he would not discuss changing my meds without it triggering a big “NO, you got hospitalized!!!” Thank god he’s not a heartless man, but pain docs have a way of making you feel like you’re drug seeking when you’re just trying to get through the day. I agree opiates can cause just about anyone to become drug seeking behavior, just for the physical addiction/ withdrawal let alone psychological addiction. However after being in opiates in and off since I was 14, I can say the ketamine is nothing like it. No withdrawal or physical addiction, just a desire to be able to abort my CHs. Currently it takes ketamine and oxygen to abort. If I don’t have both then it’s taking 200mg of ketamine to abort most but not all. And unless I get on oxygen before the pain passes kip3/4 oxygen will cut back the pain some but won’t abort. Oops I digress. tldr (too ling didn’t read): How do you earn a reasonable living w CH?

Does any one have experience w the south FL “trusted docs”? I made an appointment w Dr Kobetz, his secretary asked. And he does work w ketamine. It’s $525 first appt and 165$ each follow up. Hopefully he writes refills and you don’t have to go every month unless there is changes to the script. The other doc Dr Wealer or something like that was 850$ first apt and didn’t say how much each visit was after that. He doesn’t take insurance at all!!! She was talking him up and said he “would change my life”. I highly doubt he has a magical solution that @BostonHeadacheDochasnt found for me so far besides ketamine and oxygen. I told this to my father and he started w the magical thinking. I pissed him off bc I told him it is so frustrating that he and mom think some new doc is going to have the “magical cure no one else here knows about.” I told him that’s what the vit D and busting are for most people. He didn’t take kindly, tension is high here as we are almost a week away from closing and moving.

Err had this long post and I’m getting that error msg. So frustrating!!! ling story short doc called in 10ml of nasal spray randomly so that was good even though it’s a small amount it will come in handy for my kip 10s at my dentist appointment. Hopefully that was a one week supply and he will write me a month at my visit next week before we hit the road to FL.

Perfect fix! Thank you!

Hi and providing a bit of comparison.... before I purchased my demand valve from "Divers Alert Network" (DAN.org) I asked for some specs and this is what they provided. The cover sheet started "Life Support Products" by Allied. A late edit here with a few details that may help others. A fellow CH suggested this particular demand valve and I purchased it in late 2019 in preparation for my "normal upcoming cycle;" however, the cycle never showed up. At the end of the last cycle I had started the D3 regime and am giving that credit for the missed cycle. (I am very glad to have the new valve unused!) I tested the valve and could not get it to limit the flow and it stopped all flow as expected. From reading the spec sheet, it appears to be 160 LPM model, but I am sure I would be satisfied with 40 LPM. My transaction with DAN.org was easy, no script, no questions. The link is: https://apps.dan.org/dive-store/?id=39. The current cost is $205. Again, I have tested it, but have had little need for it. Others with more experience with this particular valve may offer comment. Be safe.

Thank you Juss. I do try and delegate most things but we own and operate a small business in which we are the leaders. I go stir crazy if I am doing nothing at work, being a part and doing my part. I love the company shoot I met my husband of 17 years there. I went through a longer than normal cycle (for me anyhow) so I was so happy to have a little fun! Thank you for the nice response!

@Freud Because of my predicament I feel as if I gotta at least try this. I cannot see staying on it forever but if it works I'll be definitely making some long-term adjustments. Nothing to lose. Tomorrow is Day 1 for me. I'd say "I feel your pain" but I have plenty of my own (ha ha).

Thank you, I may give it a three month try but I don’t know how I’m going to cut everything out completely. Complete remission is crazy. I have almost triple the attacks the average in the trial had :-(

I overheard at a conference that the inventor tried to find a use of its invention for quite a while before zooming in on CH and read that it is working on some of us but is pretty much a hit or miss. IMO there is so many things that could help the vagal nerve before trying the « zapper ».

For me I start getting random spikes on the CH side of my head. In the start of a new cycle, the random spikes can last for 2-weeks prior to a full blown CH. Some of the days leading into the cycle I may only get one spike a day then others 4 to 5. The spikes feel exactly the same as a full blown CH to me with the exception that they do not come in succession. This last cycle lasted much longer for me than any other and I am not 100% sure why however, I suspect the smoke from the bad Caldor fire may have contributed as well as the fact that I took the triptans a few times after getting 3 or 4 spikes in a row thinking that it was going to go full blown. I am now a bit intimidated to take any medicine during an attack for fear that they will lengthen the cycle.. Still learning about about this monster that has taken up residence in my brain as its only been about three years that I became so lucky

Yes, I do believe the more you learn about the condition and how it afflicts you individually is huge!

Just came across a study done in Italy testing keto diet on CCH not responding to other treatments. I'm going to give it the old college try. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/

Support from friends and family, enjoying the moment whenever i can (trying blocking anxio/depression), watching comedy shows and movies, walks in nature, self-compassion, music, grattitude that i’m more knowledgeable now than ever about the condition and some kind of hope that one day a cure will come our way.

Some of this might be useful -- though you seem to know what you're doing and you're getting advice from the pros! https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

@KmanTexas So, I've been using weld ox since 2009....the guys on ch dot com who schooled me had been using it for several years at that time.....I personally know several clusterheads that have been using it for years and I know of no one who's had any issues. Welding requires "pure" O2 for good welds....med ox and weld ox come out of the same faucet.....med ox tanks are vacuumed prior to refilling while they just do a "sniff test" on welding tanks in case there's been an acetylene crossbleed contamination due to a faulty regulator. And yes, they just exchange empties. The biggest hurdle with weld ox is that the cylinders are big and heavy so ease of mobility is a problem but crossfill adapters are readily available on ebay and you can pick up used E and D tanks on ebay and Craigslist fairly reasonable. As to O2 concentrators....they only grab around 95% O2....we see reports of success from a relatively small number of folks....they're of value only to the supplier as another avenue to bilk you and the insurance companies outta more bucks!! Dallas Denny

Indeed! And this forum has been of great help. Last time your ( @spiny), @Bejeeber's , @ThatHurtsMyHead's and @Pebblesthecorgi's words were very sincere and impactful. Also in the beginning messages of @xxx were also helpful. As @Pebblesthecorgi said " Conversely to defeat depression you must pass back through anxiety" If life tread on my toes i will be here, crying for help. However, i will try to check here, this forum, without any interests just like you people. CU

@Justin Sane, I'm interested in your experience with the Homefill system. Now that it costs $100 to get a refill on an E tank I have been looking at alternatives. I was wondering if you think the oxygen fills from the Homefill are the same as getting them filled at a gas vendor. Does it work just the same?

I'm looking into the welding o2, and it looks like a good solution. @jon019 and @Dallas Denny, my only reservation is exchanging tanks. Does your supplier fill your tank, or do you just exchange the empty one for a full one? If it's my own tank I know where it's been. Maybe I'm being too paranoid. The other thing I'm looking at is possibly filling them myself at home. Some of the medical goods suppliers sell an oxygen compressor that mounts to the top of an oxygen concentrator. It takes several hours to fill a tank with this setup, and then you just remove the the tank and use as normal. Since the o2 concentrator wouldn't deliver enough oxygen as needed for a cluster attack this looks like a good possibility. Has anyone done this before with success? I haven't read about doing this, but wouldn't it be the same as getting tanks filled by a gas vendor? It's probably never been an issue since o2 has been so cheap up until now., but at $100/tank it could cost-justify itself pretty quickly. Three years ago it cost me $65/month for all-you-can-eat oxygen, and they delivered the full tanks to my door any time I called them. That same company just told me to go pound sand.

Thanks for your thoughts, everyone.

New cycle started ... Stiff neck and sleepless nights were the signs this time.