ariella Posted June 19, 2006 Report Share Posted June 19, 2006 hiMy doctor ordered an oxygen condenser for me last week. I've been using it several times a day. Been very POTSy since mestinon lost its effect...Anyway, happy to report that so far so good. It's helping a lot.Thought this post might be helpful to someone whose insurance will cover it. (Where I live it's given on loan from an organization that lends medical equipment)Ariella Quote Link to comment Share on other sites More sharing options...
corina Posted June 19, 2006 Report Share Posted June 19, 2006 hey, that's very good news ariella!i was thinking: when i notice that mestinon is loosing it's power i (slowly) increase. i've asked my doc what is the most that i can take per day, but unfortunately i forgot. i do know that it is much more than i'm using at this moment, i'm on 3 times 2 60mg's per day. are you considering increasing mestinon, or are you at the max?corina oh and before i forget, is the oxygen condenser helping with brain fog as well? i have so much trouble with loss of (short time) memory lately. Quote Link to comment Share on other sites More sharing options...
AJVDK Posted June 19, 2006 Report Share Posted June 19, 2006 I also use oxygen. I was able to buy my out right from a medical supply store as my was costing to much. The nice thing as after I payed for it now I now longer have mothly payments. Plus it nice to have the oxygen when neededI use it now about 12-16 hours a day. I use to only use 4-6 hours but my shortness of breath, and everything potsy has gotten worse. But if you have a chance the o2 does help! Quote Link to comment Share on other sites More sharing options...
ariella Posted June 19, 2006 Author Report Share Posted June 19, 2006 Corina-To make a long story short, they started me on mestinon for myasthenia gravis. I was up to taking 60mg 8 times a day. Mestinon gradually lost it's effect, both for muscle stuff and POTs (which have been feeding off eachother anyway ever since the muscle weakness started nearly 4 years ago. They seem to both be bad at the same time). Well, my muscle weakness got much worse (very ALS-like as opposed to MG). We had a pretty bad scare last month. Doctor did an urgent EMG, and found NOTHING! He was shocked. We are waiting for me to wean off of prednisone in order to test for Lyme disease (which is known to mimic both POTS and ALS) MG dx has been revoked!I rarely take mestinon anymore, don't really nortice a difference anymore when I take it. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted June 20, 2006 Report Share Posted June 20, 2006 I have seen several folks discuss using oxygen before and wondered how and why it helps...And why I never see it listed as a common treatment if so many have success with it? Ariella, I am glad SOMETHING is giving you some relief. I know the Lyme test seems so far away...you can do it! BTW...I still owe you and everyone else an update! Sorry!Emily Quote Link to comment Share on other sites More sharing options...
stellakitty Posted June 20, 2006 Report Share Posted June 20, 2006 I was on oxygen 24/7. We have a pulse oximeter so we could sit here and watch my levels go from 97%-61% (I'd faint and become unresponsive, and that was on 5lpmof oxygen). Interesting news here... I was diagnosed with Chiari back in Feb, and had the surgery on June 7. I woke up from surgery and I didn't need the oxygen! I only needed the O2 for a couple of days when we got back home. Surgery was in Winconsin and we live at nearly 8000 ft. Quote Link to comment Share on other sites More sharing options...
JAQUIROUIN Posted June 20, 2006 Report Share Posted June 20, 2006 HI,I Think that the oxygen help us with the dysautonomi. I don' t know why. But I am sure that help. When I have a faint or If I have a POTS crisis, It really help me. I think it help us because the oxygen its a a important thig of our life. When I go to the beach I feel better, because in the beach we can have more oxygen in the air.Have a nice day! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 20, 2006 Report Share Posted June 20, 2006 This really helped me in the hospital a couple of times. I think when we're having a POTS attack, not enough blood is getting to the brain, and blood carries oxygen to the brain. This is also why people have trouble at higher altitudes - b/c the air is thinner. My friend (non-POTS) who had altitude sickenss in Colorado hung out in the oxygen room at her hotel and it helped. I have always wondered why it isn't used more often for POTS. Quote Link to comment Share on other sites More sharing options...
friday Posted June 20, 2006 Report Share Posted June 20, 2006 hiMy doctor ordered an oxygen condenser for me last week. I've been using it several times a day. Been very POTSy since mestinon lost its effect...Anyway, happy to report that so far so good. It's helping a lot.Thought this post might be helpful to someone whose insurance will cover it. (Where I live it's given on loan from an organization that lends medical equipment)AriellaI'm wondering in what way is it helpful for POTS. What symptoms does it help with?Sue Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted June 21, 2006 Report Share Posted June 21, 2006 That's really cool. I'm glad it's helping some of you! I haven't had it often, but have found it to be helpful, though I haven't had it specifically for POTS episodes. It might be something to consider when I move back out to Colorado this fall if I have problems. I'm not sure, though, is using an oxygen condenser just what you'd call 'being on oxygen??' I hope you continue to get relief with it! Quote Link to comment Share on other sites More sharing options...
ariella Posted June 26, 2006 Author Report Share Posted June 26, 2006 Sue,sorry it took so long to answer.The oxygen definitely isn't curing the POTS, but it is helping to stablize my HR, and get rid of the shaky-unfocused feeleing. But it's temporary relief. If, for example, I eat after the O2, it all starts up again. But it does help me focus. I notice it in little things. Now, when I rehearse some guitar I do it while on the machine, and I've noticed I've got more stamina and make fewer mistakes. Too bad I can't take it with me to the studio, it makes noise...Lucky,Not sure if a condenser is exactly what it is (we live in Jerusalem, and the forms are in Hebrew). It has this cup attached with water that bubbles when the machine is on, and creates oxygen that then gets sent out through a tube that goes inti my nose (tickles sometimes!) I have a tank in the house in case thre's a power outage.The doctor ordered this as opposed it tanks because tanks run out too quiclkly. I don't use it all day, the doctor left it up to me to see how much I need it. Ariella Quote Link to comment Share on other sites More sharing options...
Radha Posted June 28, 2006 Report Share Posted June 28, 2006 i use oxygen at home and it is a lifesaver!! it helps so many symptoms, but it is only temporary relief and i really should use it more than i do, it helps for the brain fog, to stabilize palpitations or faster hr, and the constant lightheadedness, and shaky feeling, i thank God i have it!radha Quote Link to comment Share on other sites More sharing options...
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