Acappella Posted January 6, 2015 Share Posted January 6, 2015 So frustrated. I'm supposed to be using a Cpap machine at night, but every time I put it on I have a panic attack and end up ripping the mask off my face and gasping for breath. Then I get attitude from doctors because I'm not complying with instructions. I can't help it. I get totally claustrophobic. I'm on the 4th mask they've wanted me to try. I'm dreading telling them I had the same reaction to this one. Honestly, if I could do it I would. I have friends who had a dramatic improvement to their health when they started to use a Cpap and I was so excited when I was first diagnosed because I thought maybe it would make my Fibromyalgia better. Now it's just another in a huge list of frustrations. I'm in pain and exhausted all the time. Sometimes going to bed and surrendering to that exhaustion is the only relief I get. Now bedtime is being turned into just another ordeal. Grrrrr. Sorry guys, I just needed to vent and you're the unlucky recipients. Link to comment Share on other sites More sharing options...
katana600 Posted January 6, 2015 Share Posted January 6, 2015 There is a reason you are so exhausted and claustrophobic and only you experience it and have clues as to coping strategies. For someone who never experienced what you live with, frustration equals a lack of imagination. It's easy to say "this should help" when they only experience success, but much harder when the magic solution doesn't fit everyone. Don't give up on the CPAP yet though. As you are discovering, there are many types of masks. Maybe it's the hose making you feel restricted and panic stricken. Can you find a way to make it come from above you rather than from the side? Can you try it for a daytime nap at some point rather than at night? I could see where looking at a full night of struggle would put more pressure and anxiety into the equation. Could you unhook the machine and attempt to wear only the mask for short periods during the daytime hours to give yourself a little practice and get used to the idea? My husband's machine has a "ramp up" cycle to allow him to get to sleep prior to staring air flow. Perhaps yours could be reset for a longer time period to allow you to read a bit and relax prior to the ramp up time. It might help a lot to experiment with the force and wean into your designated air pressure over time. I am so sorry you are so exhausted and in pain with frustration on top of it. For someone who has never had a panic attack, I can not begin to imagine how that feels to you but it must be horrible. Don't be hard on yourself. Try to think of when Dorian first came to you and was so frightened and panicked. Think of the things you said to him, how you soothed him. Then give that same compassion and calm reassurance to yourself. This machine isn't going to get the best of you. You are a survivor, a person with an inner reserve. This isn't a test of character that you pass or fail, it's a process of learning how to nurture yourself in difficult times. Be your best advocate and brainstorm until you find a solution. Maybe you need to give yourself permission to take a week off from the initiation of the CPAP machine and reschedule that doctor appointment and start again from a position of strength. My thoughts and heart are with you as you struggle to find peaceful restorative sleep. Link to comment Share on other sites More sharing options...
ranaz Posted January 6, 2015 Share Posted January 6, 2015 I am asthmatic and sleeping with a mask is difficult. Try some meditation, listen to some ocean waves CD, whale sounds or bird sounds, just try to drift away to nice places in your thoughts before you sleep. I hope this helps. Link to comment Share on other sites More sharing options...
Greywings Posted January 6, 2015 Share Posted January 6, 2015 I cannot give better advice than Katana and Ranaz, but will be thinking of your struggle and I know you can overcome this obstacle to better health. this struggle will be worth winning the battle to get some healing rest. We each have something that frightens or frustrates us so don't ever feel alone in your struggles and don't give up. Link to comment Share on other sites More sharing options...
Acappella Posted January 7, 2015 Author Share Posted January 7, 2015 Thanks guys. I went back to an older, different style mask last night and managed to get a couple hours sleep, although I woke up with a crick in my neck and a pounding headache. At least this mask didn't trigger a panic attack. Gonna try again tonight. Then at least I can go back to the Dr. with a real record of trying and what the results were. Might earn me less of an attitude. Link to comment Share on other sites More sharing options...
katana600 Posted January 7, 2015 Share Posted January 7, 2015 Way to go for going back to try again until you get a good result. A crick in your neck and a pounding headache is your willpower winning over the claustrophobic tendencies. As you drift off to sleep, start visualizing a rested, pain free, energetic self doing the things you will do when you conquer this CPAP! You can do it! Link to comment Share on other sites More sharing options...
Greywings Posted January 7, 2015 Share Posted January 7, 2015 A big step in the right direction just have to work out the "kinks", maybe a yoga class could help you with the relaxation and the tight muscles. Link to comment Share on other sites More sharing options...
Timbersmom Posted January 7, 2015 Share Posted January 7, 2015 It takes time! My boss had a cpap and he said it was a month before he was sleeping through the night without problems. However, he said that once he was adjusted to it, it was like a miracle and he felt much, much better. Link to comment Share on other sites More sharing options...
Muse Posted January 9, 2015 Share Posted January 9, 2015 Have you tried the 'nasal pillows' type? I've heard from some people that they feel less restrictive. I think the forceful air pressure adds to that feeling, especially if you are claustrophobic. It's not a pleasant thing to have to wear but the health benefits are huge if you have apnea. I agree with katana600 on asking them to lengthen your 'ramp up' time. The idea is to have you relaxed and asleep before the pressure gets high enough to where you feel your breath is being forced back into you. Some patients need longer time because they don't fall asleep fast enough. I hope you can get past this and continue using it. It really will make a huge difference in how you feel. Link to comment Share on other sites More sharing options...
Acappella Posted January 13, 2015 Author Share Posted January 13, 2015 Problem is either I don't fall asleep at all (two nights ago) or I fall asleep and wake up with the mask on the floor, the machine turned off, and no memory of doing either. I used to take my headgear off in my sleep when I had braces when I was a kid. The night in the sleep lab with the Cpap I didn't sleep at all so they sent me home with a machine with a recording computer chip to get data here. Problem is I'm not having much more luck here. Even taking a sleeping pill doesn't work, then I'm even more exhausted the next day. Thus my frustration. Grrrrr. I'm gonna keep trying. Thanks for the support guys. I do appreciate it. Link to comment Share on other sites More sharing options...
katana600 Posted January 13, 2015 Share Posted January 13, 2015 If nothing else, I breathe a sigh of relief knowing "it isn't just me". I have had four or five mouth guards since getting my braces off recently. My regular dentist is patient and keeps trying. As you say, I wake up in the night and notice its gone. I find it in strange places with no memory of getting up. Small changes pester me more than the average person. If a neighbor gets a new outside light I will wake up and get up for months until my brain finally accepts it is not a signal that something is amiss. No wonder we are so tuned in to our grey feathered friends. Be kind and patient to yourself. Consider what you would say to Dorian if something troubled him in the night. Let your inner voice e soothing and keep trying. When you awaken without your mask, turn off the machine. Turn it back on and start fresh from there. A day will dawn when you slowly realize it was on all night. Take small steps and recognize and give yourself small rewards for success no matter how small. You can do this. Link to comment Share on other sites More sharing options...
Acappella Posted January 23, 2015 Author Share Posted January 23, 2015 ASTYHMA can potentiontally cause heart attacks as the body gets older So can untreated apnea. That's one of the reasons I keep on trying. Trying another new mask as the one I have been trying is now giving me panic attacks. In addition to the panic from having something touching my face, I find they make me too ultra aware of my breath in and out, and I start to hyperventilate. This new mask is the 'mask we use when no other mask works' mask, so keep a good thought for me. Link to comment Share on other sites More sharing options...
katana600 Posted January 23, 2015 Share Posted January 23, 2015 You can do this. In the darkest weeks after losing Juno, it was the song you sang so beautifully with Dorian "Just Breathe" that even to this day, I hear in my mind in rough days, through hard decisions and through all the worst days of being a hospice care provider for loved ones. This night is what you have to rest and nurture your body and soothe your soul. Hear your own voice singing and give to yourself the kindness I so often feel on my shoulder from you. You will do this. It will get better. Link to comment Share on other sites More sharing options...
kins2321@yahoo.com Posted January 24, 2015 Share Posted January 24, 2015 Asthma, or COPD, will not give you a heart attack.... thats just silly! Acappella... you NEED to complain to your MD, as long as it takes! Also... look into a support group and see what works for them! I deal with patients all the time that don't use their machine. I would say around 50%.I put them to sleep with either conscious sedation, or general anesthesia. Their sleep apnea ALWAYS complicates their recovery...It is hard to understand how serious sleep apnea is, as most patients are asleep! It really is life threatening! Nancy Link to comment Share on other sites More sharing options...
Acappella Posted April 9, 2015 Author Share Posted April 9, 2015 Well, an update on the CPap situation. I'm having some limited success with a new mask and machine. I can keep it on for about four hours at a time before I wake up, but at least I usually wake up with it on. Then I have to take it off for a while, read or get up briefly, then put it back on and try to get some more sleep. Can't say I've felt any benefit from it yet, but the therapist says I've been sleep deprived for so long it may take awhile to start to recover and feel better. So put me down as cautiously optimistic. Link to comment Share on other sites More sharing options...
katana600 Posted April 10, 2015 Share Posted April 10, 2015 It has to feel like success to make it four hours. Every step forward is cause for celebration. At least for four hours a night you are getting the optimal oxygenation and rest. As time goes on just as surely as Miss Gilbert builds trust and that trust opens her heart and mind, your supreme efforts to overcome your resistance to your mask are creating changes. Thanks for the update. I'm looking forward to the one when you wake up in the morning and realize you made it all night. You are getting there. It's going to make a difference. My husband now feels worn out if he travels and sleeps without his. Link to comment Share on other sites More sharing options...
Muse Posted April 10, 2015 Share Posted April 10, 2015 GOOD for you! It's not the most comfortable thing to deal with. Is yours neurological (brain forgets to breathe) or physical (something falls into place and blocks the airway)? If it's the latter, I read about a procedure where they can implant little supports to keep the airway open. I didn't dig into it too deeply as the patient was not really a good candidate for surgery at that time but it might be something to look in to. I hope eventually the CPAP works for you and you are able to get good, restful sleep! Link to comment Share on other sites More sharing options...
Acappella Posted April 10, 2015 Author Share Posted April 10, 2015 I gave myself the night off from it last night because I had a molar root canal yesterday and the whole side of my face where the straps cross is swelled up & painfull. We'll see how things have settled down tonight. Thanks for the support guys. It means a lot. Link to comment Share on other sites More sharing options...
kins2321@yahoo.com Posted April 11, 2015 Share Posted April 11, 2015 Acappella... I am okay with giving you a day off! ONE DAY! Sleep apnea is very serious. I'm the one watching you closely, when you wakeup from anesthesia, and I am the one that readjusts your airway, that continues you to breathe...you are sleeping, so you don't understand! Nancy Link to comment Share on other sites More sharing options...
Dave007 Posted April 11, 2015 Share Posted April 11, 2015 (edited) Asthma, or COPD, will not give you a heart attack.... thats just silly! If I make a statement which has to do with different side effects of chronic disease, it's not just something I think up and say just because I think it's the truth. I do extensive research before saying something since I'm not the one with the final answers. I have no acronym before or after my name but I truly care about a person's health and want to give some official information about the problem. ESpecially this illness.I won't tell a person or people to beware of something just because I think it's true. COPD and Asthma are serious irreversible illnesses which can affect the heart. I don't consider this information to be --- *that's just silly!* There are a few other people here that know that I have COPD. I just don't talk about it. I under the care of a Pulmology Specialist . I have to go through spiromitry testing which is lung/air volume, every 6 mts. A CT Scan once a year for any heart problems because of the possible heart injury that may occur because of my COPD even though I've never had any heart problems. I have regular scans for possible pneumonia, and Bronchitis. I've had this illness for 25 yrs so I'm considered one of the lucky ones. So, for those people here with chronic lung/breathing problems, this website is just for people who wanna know the full scope of lung disease. Remember, I'm not the Pulmologist here. http://www.webmd.com/lung/copd/news/20100120/mild-copd-may-hurt-the-heart Edited April 11, 2015 by Dave007 Link to comment Share on other sites More sharing options...
neoow Posted April 11, 2015 Share Posted April 11, 2015 My mum suffered with sleep apnea and had to sleep with a mask. She struggled with it an awful lot and took ages before she could cope with sleeping in it. She'd often wake up clawing at her own face to try and rip it off because she thought someone was trying to smother her. She was told to lose weight at the time as well as the doctors said all the excess weight was making it worse. She did this and persevered with the mask and it seemed to help, once she finally got used to it. I don't think she uses it these days though. I'm not sure if she just got to the point where it wasn't an issue anymore? I can only imagine how difficult it must be. 4 hours at a time is good progress. I hope things improve for you! Link to comment Share on other sites More sharing options...
Muse Posted April 12, 2015 Share Posted April 12, 2015 If I make a statement which has to do with different side effects of chronic disease, it's not just something I think up and say just because I think it's the truth. I do extensive research before saying something since I'm not the one with the final answers. I have no acronym before or after my name but I truly care about a person's health and want to give some official information about the problem. ESpecially this illness.I won't tell a person or people to beware of something just because I think it's true. COPD and Asthma are serious irreversible illnesses which can affect the heart. I don't consider this information to be --- *that's just silly!* There are a few other people here that know that I have COPD. I just don't talk about it. I under the care of a Pulmology Specialist . I have to go through spiromitry testing which is lung/air volume, every 6 mts. A CT Scan once a year for any heart problems because of the possible heart injury that may occur because of my COPD even though I've never had any heart problems. I have regular scans for possible pneumonia, and Bronchitis. I've had this illness for 25 yrs so I'm considered one of the lucky ones. So, for those people here with chronic lung/breathing problems, this website is just for people who wanna know the full scope of lung disease. Remember, I'm not the Pulmologist here. http://www.webmd.com/lung/copd/news/20100120/mild-copd-may-hurt-the-heart Apnea raises the risk even further, because it invokes a panic response, repeatedly, for as many times as you stop breathing. It's the same time of response you would have if a stranger comes behind you and grabs you, covering your mouth and nose so that you cannot breathe. The body is programmed for survival and will go into a 'fight or flight' response - which sends BP and heart rate skyrocketing. There may not be some evil person trying to suffocate you, but in the case of apnea - your own BODY becomes that villain. Either due to obstruction of the airway (obstructive) or neurological issues (central), you literally stop breathing - in some cases this happens MANY times per hour while you sleep. Now think about how panicking over and over again throughout the night and you can see why it might cause elevated blood pressure and raise the risk of stroke or heart attack. I cared for a patient who had COPD and apnea. Her sleep study showed about 29 times each hour she stopped breathing. She was in and out of the hospital and totally unable to care for herself until she got a BiPAP (similar to CPAP but it actually assists both breathing in AND breathing out). Her main problem was not the lack of oxygen during the apnea but rather a build-up of CO2. The BiPAP literally changed her world. Apnea is far more serious than many people like to believe, so unfortunately many patients don't take it as seriously as they should and just are not compliant with their CPAP. Add apnea together with COPD or asthma (or even both) and you have even more risk for adverse events. I always tried to do get my patients to understand that it's not just about not getting "good sleep" but there are other serious risks as well. An educated patient is more likely to do all they can to work towards compliance. Dave, 25 years and you must be doing something right. Most of my COPD patients were given life expectancies in months. Sounds like your pulmonologist knows what he's doing! Link to comment Share on other sites More sharing options...
Acappella Posted April 12, 2015 Author Share Posted April 12, 2015 In my last sleep study I had 72 apneas in an hour. They're parly physical and partly neurological. That is, I've always snored and stopped breathing, then as I gained weight it got markedly worse. Of course apnea feeds weight gain because of the constant exhaustion. Add to that my fibromyalgia and the sleep disturbances that usually come with that and it's a bit of a perfect storm. I'm really trying with the Cpap this time because I have friends who've we had success with it, and I'm sick and tired of feeling sick and tired all the time. It may not ever go away,but I have to believe it can get better. Can't say I've felt any benefit yet, but at only 4 hours at a time after years of being sleep deprived my therapist says it could be a wile before I do. Link to comment Share on other sites More sharing options...
katana600 Posted April 12, 2015 Share Posted April 12, 2015 My husband has sleep apnea and wears a CPAP and it certainly improved his life span because I was reaching the point of considering an act of wickedness against him. Thankfully, the CPAP lets both of us get a good night of sleep. Okay, full disclosure... or TMI... the worst I could muster against him was to hone a sharp toenail to gouge the back of his leg in the night when the gentle techniques of getting him to roll over in his sleep to stop that beastly snoring and gasping proved ineffective. Bwahahaha. All joking aside, the CPAP has been a fantastic sleep aid, he is back to better health than ever, running half marathons and keeping up with our grown daughters in their hobby. As an added benefit, the gentle white noise of the CPAP prevents him from hearing my snoring and devising methods of retaliation... that's my story and I'm sticking to it. Link to comment Share on other sites More sharing options...
kins2321@yahoo.com Posted April 12, 2015 Share Posted April 12, 2015 Dave, when you get a cat scan, they are looking at your lung function, not cardiac function, unless you get a " cardiac CT", which is to determine your ejection fracture, which is looking for cardiac disease. This is NOT done, for people with empyhsema. I also, can relate to respiratory issues, as I have had two asthmatic children. A heart attack, is NOT related to COPD. Nancy Link to comment Share on other sites More sharing options...
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