12-11-2013, 10:13 AM
(This post was last modified: 12-11-2013, 10:13 AM by ShelaghDB.)
Thanks and yes i can get it changed i believe........
I did my first night last night.
Cant say I feel any different this morning than any other morning but i never felt sleepy anyhow, at least that i am aware of?
I made it through the night very easily with the FF mask. Never felt claustrophobic at all.
BUT, I woke up with the dryest mouth I have ever experienced and cold front teeth.....LOL ( the air against my teeth I assume)
Obviously it didn't help to have me breathe out of my nose......
It was uncomfortably dry in fact....
I think I will need something else, that will keep my mouth closed.
Others have mentioned chin straps.......maybe thats the answer
push for an autoset is my suggestion so you can have the option of not being on a set pressure the whole night you sleep. that way, you won't have to change machines again unless your apnea is central or you have a hard time adjusting to CPAP. A lot of members think it is easier to have a pressure range that is provided by the autoset so you don't have a higher pressure consistently during the night while you are sleeping. With an autoset, you get the pressure you need at the time. Hope this helps some. I don't know if people use chin straps with a FFM. If you have to use a chin strap, you may want to think about a nasal mask or nasal pillows. These are just suggestions for you to think about and make a decision on what you think is best for you. Wishing you much success in your therapy.
12-11-2013, 10:49 AM
(This post was last modified: 12-11-2013, 10:51 AM by ShelaghDB.)
Ok, so I will push for an auto set and Im pushing for a chin strap and nasal pillows/etc.
I am emailing them today for my husband will be getting his prescription this afternoon so one day this week I want to pick up his and have mine changed..
Thanks all of you for all the help so far...........
I should also mention that i noticed small leaks at the bottom sides of the mask....i think its a quattro.....not important as i am asking for a change anyhow
WHen I was getting my new machine, I called ResMed and verified what kind of machine I was getting and verified how long it had been in circulation. Just make sure you check the hours on the machine so you aren't stuck with a used machine. I think there is a post specifically for masks and has pictures of them. Wishing you and your husband much success in your therapy.
12-11-2013, 12:42 PM
(This post was last modified: 12-11-2013, 12:43 PM by ShelaghDB.)
I was reading Wikipedia about the different face masks.
I understand that a FF mask is what is normally given to mouth breathers such as myself. And I unlike others am ahead at least in that i don't feel claustrophobic with it but if what i read is correct, it is still technically the best choice for me, even over nasal pillows or a mask such as the Swift Lt?
I did say earlier that I did notice a bit of leakage on either side of my mouth or chin...... i was waking up so I don't remember exactly where it was....
I know one or two here said that a FF mask was hard to get used to so perhaps id rather a chin restraint and pillows but IF it is technically the best choice and I can handle it, would it not be best to try and work with the FF if it can be?
In other words can I possibly wear a chin restraint with the FF as well OR would it be advisable.
Thats where I was going until I read this paragraph:
"Air leaks happen from the mouth whenever the mouth is opened during CPAP therapy. This occurs for many reasons, but a very common one is due to nasal irritation from the CPAP airflow. The correlation between a lack of humidification and mouth leaks is a topic being heavily researched. Studies are now being conducted on the hypothesis that a large amount of mouth leakage is caused by the following cycle:
* CPAP therapy is used with ineffective or no humidification.
* The nasal membranes are unable to adequately condition the increased airflow and after a few minutes the airway and nasal passages become dry.
* To remedy the dryness and obtain moisture, the body uses the mouth to breathe.
* CPAP air follows the path of least resistance and leaks out of the open mouth.
* The air leaking through the mouth causes more dryness.
* Patient wakes up feeling tired with significant dryness in mouth and dry, swollen nasal passages.
The answer to this cycle is humidification. If the mouth continues to open during sleep, a chinstrap may be needed to hold the jaw up so that the mouth can close. If mouth breathing continues, a full face mask, hybrid mask, or oral mask is suggested."
I can't say if i woke up tired but now I woke up exactly as i do every morning but the dryness in my mouth was quite uncomfortable so yes they are right about that and the teeth were cold so reading it I could see I might need it warmer?
So IF the FF is the best and i am having problems with cold teeth and leakage, should I bother to remain with the FF or go with something like the Swift LT and nasal pillows?
1 or 2 here have suggested it BUT Is it guaranteed to fix the mouth open issue, having a chin restraint and nasal pillows?
And what exactly is the purpose of these pillows?
If for whatever reason my nose is not working properly are the pillows meant to force air in and is that healthy if it must be forced? But will it work, definitely? If my mouth is wanting to breathe it sounds a bit scary forcing it closed if I can't breathe out of my nose properly, no?
I am trying to avoid trying out 20 different masks and wish to get it right as soon as i can ;-)
12-11-2013, 12:57 PM
(This post was last modified: 12-11-2013, 01:30 PM by me50.)
I am also a mouth breather and for almost 3 years I tried several full face masks and had continual leaks that continued to wake me up. I kept trying different sizes, ffm, my sleep quality sucked then I went to the sleep lab that gave me 11 masks to try and told me that normally during a sleep study they start off with nasal or pillows and go to a full face mask if necessary. I chose the wisp nasal mask and they gave me a chin strap and my pressure is lower my leaks are very low and my sleep is no longer as disrupted among other improvements. masks are so individualized that what works for one may not work for another however some mouth breathers can use other masks besides a full face mask. FFM's tend to leak. It just depends on what will work for you and I am happy with the results of the wisp and chin strap. If my allergies are acting out, I use my nasal spray (patanase) and for a dry nose (which I have not had on the nasal mask as of yet) I keep AYR saline nasal gel with aloe vera. Some have said that the chin straps don't keep their mouth shut. It all depends on the person, any dental issues, TMJ, etc. and their comfort. Some chin straps, like masks, work well and other times, one has to try different chin straps. Masks, chin straps are very individualized and the masks are the hardest part of this (or I should say finding the right mask). I didn't have trouble adjusting to a FFM but I had trouble sleeping because of the huge leaks and I tried 2 of the newer masks as well as the one I started with and tried different sizes. The newer masks leaked worse than the original mask I tried. The leaks disrupted my already fragmented sleep. Hope this helps.
(12-10-2013, 05:35 PM)ShelaghDB Wrote: Secondly. I am 54 but up until 4 years ago I had the body of a 20 year old, flat tummy, etc. never having had children and weight about 120 an ideal weight for my size.
Due to some medication I was put on, I developed an insatiable craving for sweets and at the same time stopped walking and began to ride a scooter everywhere. The combined effect, had me gain about 50 pounds which is a hell of a lot of weight for me. I'm just now off the medication as it was temporary, well, as in a couple of years but no longer needed and now its just time for me to start walking daily again, and dropping the weight without the high sugar intake daily and my weight will drop back to its normal state. Who knows? Perhaps I will gain an extra 5-10 pounds but my body could deal with it if it did, or at least how it was 4 years ago.
The sleep doctor seemed to feel that because this weight gain is, as he hopes, temporary, that I didn't need the machine but i pushed for it so we went ahead.
One other thing I have noticed and i don't know if any of you are the same.............I have noticed over the years that as i am sitting at the computer, or watching TV, reading a book and I will suddenly notice, although i am fully awake, that i have stopped breathing for a few seconds. Almost as if one does by holding their breath for a moment if they are watching a scary movie and that part is the part that scares them at that moment, well, often people hold their breath for a moment until that scene moves forward.
In my case, i don't know why I do it but have always done so, even when thinner, years earlier etc so MAYBE this is part of it or a tendency towards this happening when I sleep.....wonder if any of you also do this or whether its just normal to do so anyhow??!!
I, too, am 54. Four and a half years ago I was diagnosed with Breast Cancer. I have been on a post cancer medication since then that is known to cause weight gain and reported by other women to be near impossible to lose weight while on it regardless of exercise or good eating habits. It messes with the metabolism for one thing. In the past four years I have gained 60 lbs. I weighed 125 when I was diagnosed. I have been blaming my medication for the weight gain and complaining to my Oncologist. She just tells me to eat less exercise more. I have been going to the gym regularly and in over two years I have not lost one pound. I eat healthy too. I can't get that through to my Oncologist that I don't think it is lack of exercise or bad eating habits. She wants to keep me on the medicine two years longer than is normal which I don't want either. I know what the protocol for the medicine is and I haven't found anything to warrant keeping me on it two years longer. I began with one medicine and 1.5 years into it changed to another med to avoid more dangerous side affects from the first medicine. The doctor doesn't want to count that first 1.5 years and wants a full 5 years on the second medicine. I don't understand it and will deal with that when the initial 5 years are up.
I was overweight probably 8 years ago (following a different 'unrelated cancer). I changed bad habits and and began exercising ... successfully lost at that time 40 pounds to get to a healthy weight for me of 125 and swore I would never go back to heavy again. Then cancer #2 and I feel like the carpet was pulled out from under me. I have been appalled to see how much even 'more' heavy I am now. I beat myself up about it and highly frustrated.
I have blamed carrying all that extra weight around and being older on the fatigue I have felt in the last few years. And my snoring only got really bad the last two years (according to my husband). Since I was diagnosed with OSA in October, I have learned that weight gain can be a result of OSA as well and also difficult to lose it. I have read countless posts on this forum of people losing weight when they get their healthy sleeping under way. Now I am considering I have a double whammy with the weight gain. Not only from the medication but with OSA too. I inquired with the sleep doctor if my OSA was caused by the weight gain in the past 4 years and if it would go away when I lose weight after getting off the medication. I was told OSA doesn't typically go completely away with weight loss. But it can change as far as pressure prescribed and if I were to lose a lot of weight, another sleep study would need to be done to determine a pressure change.
Also, with stopping breathing or holding breath while wide awake. I find I do so if I am intently concentrating on something on my computer or reading or even in very deep in thought and my anxiety level increases. Sometimes to the point where I get light-headed. I will even say when I started reading this forum, before I went on CPAP a week ago, I found myself holding my breath as I read of many posts of a foreign way of life I would soon be joining and the difficulties many have getting used to CPAP. I am certain now I was making a mountain out of a mole hill before I even began the therapy.
I have had struggles in the first few days in particular with CPAP but it can be survived. And as many on here say, it is sure better than the alternative. I am looking for that silver lining of being able to lose weight. Maybe the CPAP is giving people more energy to exercise and maybe metabolisms are improving allowing it. I know I fight with myself every day after work to make myself go to the gym and have been doing it for 2+ years because of lack of energy. The mental battle and beating myself up is exhausting too.
Good luck with your journey!
Thanks for your story and I see you have been through a lot. I don't know if you have reached the point in your BC journey where you can honestly say, "Thank God for BC" but I hope you do if you haven't already.
No I have not had BC and touch wood hope never to do so. My mother got it at age 75 and through helping her I became good friends with a fairly well known American BC activist and she had me helping out quite a few people when they were first diagnosed here in Toronto Canada so I am familiar with a lot of the journeys. I say that for one thing I could not ever understand was why any of them kept saying to me, "Thank God for BC"
I wanted to shake each one of them and ask them what possible medication could they be on that could be screwing with their heads, making them grateful for having BC. Who in their right mind would be grateful, right? It had to be drug related, right? LOL
Well, not so. I finally realized what they meant.
The journey becomes a spiritual one for many and at a certain point when the survivor knows she is not only going to be ok but has become involved in some great BC Groups, marathons, or whatever it might be for that person, and has become surrounded by people who truly love them such as other survivors, and so on..........this person comes to realize that BC has brought a change into their lives for the better. Their lives are richer, they have learned how to truly rejoice in every moment and most I have spoken to would never go back to how it had been before......
So, I hope you too have reached that point but if not, know that it is ahead for you.... ;-)
As for the weight gain and the drug you don't believe you need...I am not an oncologist and would not begin to advise someone on what they need or don't need but do firmly believe that one has to become their own advocate with such a journey and only you truly know what you need and when you need it and if you are convinced that you don't and that it could help you to get your weight back, then I would at least suggest speaking to another oncologist, one that hears you and get that 2nd or 3rd opinion. My experience with my mother and stories i have heard from others is that no matter how brilliant your particular oncologist might be, they are dealing with death on a daily basis and therefore have to become so detached from their patients that i believe many of them forget how to reconnect and listen to each person individually. Perhaps your route with this one doctor is nearing an end and its time for another? Who knows, but I would trust that voice inside of yourself and then just to be sure, get some backing up of it from another oncologist that can either convince you that your inside voice is correct or at worst, at least let you know if it isn't time to stop that medicine, when it will be and work towards that goal.
But yes when you are small by nature, its very hard to gain so much weight when you know its temporary. IF it were not and you knew that you would be at this weight for the rest of your life then you do whats necessary to love yourself as you now are and you learn to accept your new body but when its temporary, you can't for it is, just that, temporary.
So I can relate to what you are experiencing although in my case it truly is my own doing and I have been a terrible procrastinator and am also an addictive personality and I have put off cutting out the sugar and high fat content of this new found awful diet
I've known many woman with BC and/or other types of cancer and they all went back roughly more or less to their desired weight other than a few that had other complications.
Even though you might not be down to your desired weight going to the gym as you are doing, its likely keeping you from gaining even more weight.It sounds as if you are doing whats right for you even if you aren't seeing the desired results quite yet.
As for the breathing thing I was talking about, your description isn't quite what i mean for its normal I believe to stop berating like you have described when you have other been quickly scared or am anxious and find yourself holding your breath etc.
What I was trying to explain for myself doesn't happen because i am scared but it just happens. I will suddenly notice I haven't taken a breath for perhaps 20 or 30 seconds. Perhaps it isn't anything. Perhaps it is common and its not every day but perhaps once or twice a week? I can't say for i haven't really paid attention. In any event, I will drop that and not give it another thought.
As for the different masks, etc, I see I will likely have to try several as well and am not looking forward to all the trips back and forth to this place where i must pick them up from but I suppose it must be done ;-(
Thanks for everyones help.........on to the next step now, going though finding the right mask.
Chat soon and once again, MUCH thanks for all of your help!!!!!!
Thanks for your words of encouragement. I would say both cancers (10 years apart and unrelated) have made me learn to evaluate and improve and appreciate the little things and be thankful. I was young for both cancers and no history in my family so it made a lot of people stop and think and be aware. I live in a small community where everyone knows everyone. So many people said if it happened to me it could happen to them. I am actually very involved and participate in events. I have also become the 'go to' person when others are facing what I have been through. For advice, names of doctors, where to get supplies, and just words of hope and encouragement.
Your suggestion of getting a second opinion is a good one and actually one my husband has discussed with me when I reach the magical 5 year mark. Rather than hi-jack your thread, I sent you a PM with all the details on the doctors and meds.
I stop breathing while awake but I just think it is I hold my breath when in deep thought and not aware of it until I become aware of it with the light-headed feeling.
Again, good luck with your therapy.