FunTimes
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Posts posted by FunTimes
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if you have the script from your doctor for the oxygen start calling around to all the vendors in your area and get the ball rolling. You will probably only need the tanks from them and get your own regulators and mask. I pay out of pocket for my oxygen as it is cheaper for me that way. Here is a few links to regulators and the oxygen mask you will want to get for your setup. You will want a regulator that goes up to 25 LPM with a barb fitting for the tubing to attach to it.
Mask: http://www.clusterheadaches.com/ccp8/
540 Regulator for larger size tanks (M, M60): https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 or https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=pd_lpo_sccl_1/135-6324550-2316945?pd_rd_w=zpYOS&content-id=amzn1.sym.116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_p=116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_r=K8YQYE2NB64K5QQ6HF88&pd_rd_wg=ocBIu&pd_rd_r=c4fe90c6-deed-4591-8360-0bc059358ef9&pd_rd_i=B07ZS9JK7P&psc=1
Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator or https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ/ref=asc_df_B00BLQKKQQ/?tag=hyprod-20&linkCode=df0&hvadid=167135816306&hvpos=&hvnetw=g&hvrand=18085319068956249510&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9007275&hvtargid=pla-500449369392&psc=1
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I know just what your feeling. I have had so many people in my family do so many things to try to and succeed in helping me out in different ways. Still I have times I have that same lonely feeling. Comes and goes once or twice a year for me but it does go. It sucks almost as much as the clusters themselves but just keep positive and make sure you tell your family you appreciate the help and love them, explain your feelings and im sure they will try to understand. Stock up on as much of that oxygen you can and try not to let it run out and you will pull through this. I am sure you know from poking around on this site that we have all had issues like this at one point of another and we are all here to support each other. For me reading, asking questions and not being afraid to try new things has kept me from going nuts.
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Dani, You need your blood tested for your current levels of: Calcium, D3, and PTH. This will give you a base line of what your starting out with and have something to compare to after a few months. You will want to have blood work done every few months.
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I tend to keep my hand on the regulator as I am using my oxygen and adjust it up and down as needed. I try not to let the bag overfill to the point the oxygen is coming into the mask before I am ready for it. I change my breathing up almost hit to hit as needed. Sometimes long deep breathing works and others short faster breathing helps me better. It kind of depends on the situation and how fast I get to the 02 tank and get started. I will also chug down a 5hr drink to give the 02 a jump start, grab an ice pack and find a effective pressure point to apply that to it, Also changes per hit, and adjust my seating position. I am a sitter not a walker so stretching out my back or doing a crunch or both will change the effectiveness of my 02 sessions.
By the end of the party I am breathing at a normal rate at maybe 4 or 5 lpm on the regulator.
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Great to hear your back on your feet Denny. Hope all goes well for you in the coming weeks!
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Here is the info for Air liquide in NS Canada Not sure how close you will be to that but I just did a google maps search of oxygen supply companies.
Air Liquide
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I have called travel agencies and asked them to recommend a medical supply company they use for travel to areas. They supply wheelchairs walkers and oxygen needs to travelers all the time and can maybe hook you up with a company.
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Yep, that is the king of o2 masks, could be the queen also I guess.. Depends on how you name it.
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when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. Only track things now when I am in a clinical trial and they normally give you some sort of tracking device for it.
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Welcome to the club that is not so fun to be in! but we can get you figured out and in a better place.
What have you done so fat to treat the cluster portion of your misfortune? Being a welder gives you an edge as you should be familiar with oxygen and how to obtain it. You can read all about that here on this site. Other things you will want to read up on are the D3 regimen, % hour type energy drinks and check out the busting stories section of the site. Ask a tun of questions and everything will hopefully get much better for you physically and mentally.
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if you can get the prescription you can call all the oxygen supply houses in your area and tell them you have no insurance and will self pay. It turned out to cost me less money doing it this way. you do not need anything other that the full tanks from them as you will want to buy your own high flow regulators online and a cluster mask that allows more 02 intake and no outside air.
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Could also try real Frankincense oil drip on the tongue, that has helped me just as good as the energy drinks.
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Monster, redbull, 5hr drinks all can help and tend not to keep people awake when used for clusters. You can also try strong coffee at room temp, ginger tea, candy or chew fresh. feet in very hot water and ice pack on your head on the cluster side. hyperventilating like you have your oxygen tank on full blast. Vigorous exercise like pushups, running jump n jacks. Any one of the things listed can help but can also make it worse, only you know your system but try it all out and find something that will help out as much as you can. Best of luck to you
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I have thought about this as well. I have never taken it alone, only in energy drinks. I think the addition of the caffeine in the drinks along with the taurine is what helps but I have never heard of anyone trying it alone as a supplement along with the D3
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after using this a few times It does work. thing is when dealing with pressures you will only be able to equalize the pressure in both tanks. I am using a M tank to refill E tanks and the first one I get about 3/4 of the E tank filled the second E tank off the M tank is down to about half. It is better that nothing when they stop refilling your E tanks and you need something portable.
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just logged on after some time.. Sorry to hear this but glad things are getting better for you.
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People have questioned this in the past but I do not think any correlation between the two. I did not have glasses when I first started my fabulous cluster journey but I have them now. I think this only has to do with age and both eyes are about the same for me.
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I had you in mind when I found this. I also have one on order and will let you know how it works out for me.
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Has anyone tried this setup or anything like it to fill smaller E tanks from a larger M tank?
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Just for shits and giggles it would be great to find a man to go in and see this doc with all the same symptoms exactly as you described and see what that outcome would be. Compare notes and present them to this doc. Not that that would be possible and I am sure someone would have an explanation for the different between the male and female treatments, it would just be nice to shove it up this guys arse.
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Verapamil.. I currently take 360mg a day, 120 3 times a day, I have taken up to 1020 a day. The more I took the more side effects I had. When I was up around the 1020 it was the extended release. Now I take the standard (quick) release and can get good results with a lower dose. I am chronic so I take it all year round and I do play with my dose even though it is bad for you like Shaun said. You should have your doctor monitor you with ekg when making any changes to your does. I have read about some of our ECH friends here only taking it when in cycle and others all year round. I have also heard that it has stopped working after then stop and restart taking it again. That is the nature of the beast, what works today may not work tomorrow. I do not know how much harm the 5hr drinks can do, I have drank upwards of 8 to 10 a day at times when things got bad. The verapamil will also take some time to get into your system before you start to see any results. A lot of times you will get a prednisone dose pack to hold you over for about a week for the verapamil to kick in. Alos not the best for you to use prednisone to often but we do what we gotta do..
Other things to read up on that will help you are the vitamin D3, just vitamins that you should also monitor with occasional blood work to check your levels
OXYGEN!! No harm to your body at all and works as the best abortive. Good clean fun!
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Annette
Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!
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What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup
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OXYGEN. Read all about it here and get it as soon as you can.
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Basic on/off inline flow control for standard oxygen tubing?
in General Board
Posted
The only thing I would worry about is the pressure from the tank blowing the tubing off of one of your connections. I don't know how long the normal 02 tubbing can hold the pressure of a full tank at around 2000 psi. Just something to keep an eye on.