I underwent a sleep study on 5-21-13 at the recommendation of my Neuro. This surprised me a bit because I never considered myself a poor sleeper. But, I was experiencing chronic dreams toward dawn in which physical symptoms would get incorporated into my dreams, such as significant pain from falling down, shortness of breath from running & falling, and the strong urge to vomit. I would awake from these dreams experiencing these physical symptoms. It was concerning.
The Clinician who worked with me during the sleep study explained she would only apply the C-PAP mask to aid with breathing if I was experiencing apnea. She did come in and apply the mask @ 2:30. Up to that point, I was sleeping poorly, which I attributed to being in a different environment, hooked up to an EEG and other monitoring devices.
However, when the C-PAP was applied to my nasal area, the situation worsened. I struggled to breath nasally and fought the machine. The Clinician at first said that was a normal reaction, but had to come and adjust the settings several times. My sleep was even poorer with the mask. I dismissed the study as just a bad night's sleep due to being in a different environment, hooked-up to monitoring devices, and for sure, the C-PAP, which made me feel like I was smothering more than it didn't.
I saw my Neuro on Thurs, 5-31 for the sleep study results as well as to discuss other matters. To my great surprise, I was told I have severe sleep apnea. He stated I stopped breathing/woke-up 112 times per hour, or roughly every 30 seconds.
He explained there are 2 types of sleep apneas. The first is Obstructive, meaning airways are blocked from excess or unnecessary tissue like tonsils and adenoids, which at the age of 54, I still have. It can also be caused by blockages in the nasal cavities, such as a deviated septum. One and a half years ago, I found out via a MRI by my ENT, I do have a deviated septum on the right side. He believes I was born with it due to the absence of trauma internally or externally. I had gone to him because I suddenly felt like I couldn't breath well on that side as opposed to the healthy side. Why if I was born with it I should have a sudden onset of that symptom, is unknown. Go figure.
The other type is Central Sleep Apnea. This is caused by irregularities in the brain's normal signals to breathe. Unfortunately, he stated the great majority of my apnea is due to Central Sleep Apnea vs. Obstructive. He said the ratio was 1:10, meaning for every 10 apnea events, only 1 was due to obstruction.
I had prepared myself for in the unlikely case I had apnea, I assumed it was because I had tonsils, adenoids, and a deviated septum. I made my case to have those surgically removed/repaired until he explained it would do little to no good because I have mostly Central apnea.
The subject of to have, or not to have anesthesia, has come up recently on blogs, with Jimbo advising strongly against it based on information he gathered from an Anesthesiologist. Jim, if I didn't get that right, please correct me.
My Neuro agreed against any future anesthesia 100 percent. In fact, he said even if my apnea was mostly obstructive, he'd advise against surgery, because it would involve general anesthesia. He stated that intubating, getting the airway in place, isn't the concern, it's extubating it, and in PSP patients, it's a much higher risk that the body will return to it's normal functioning, including simply breathing.
I know Jim has cautioned against it and now I understand why a lot better. He also mentioned that is why he is extra careful his wife doesn't fall, or have a bad enough fall that would require surgery/anesthesia.
So I think this is very important information to continue sharing with PSP suffers and their caretakers. If anyone disagrees, I would be interested in hearing your viewpoint. But as far as my Doc is concerned, I will have no anesthesia of any kind going forward because of the increased risk of adverse events in PSP suffers.
So where does that leave me and trying to manage my sleep apnea? He's referred to an oxygen company that will get in touch, and we'll start the process. He said it can take several weeks to 'get it just right'. Apparently there are 20 different masks that can be tried and some are more suited to a person than others. The objective is to get one that's comfortable and tight fitting, so the meds/forced air that's blown in doesn't escape.
He also stated that since my Apnea is Central, it's trickier to manage and will probably require a second machine to monitor the C-PAP machine as a back-up; an auto correct device, so-to-speak. So I will probably have to do a 2nd sleep study to add that machine to see if it's a benefit. Thankfully, as I understand it, this company also makes home visits to help you adjust it so you don't have to haul the equipment back and forth.
He also gave me a cautionary tale for those in the US. I am on Medicare but I have a Medicare replacement policy called UCare (costs more, but has expanded coverage). He said UCare for sure, & possibly other replacement policies, will only cover it if you use it every single night for a minimum of 4 hours. He said there is built-in monitoring devices so the insurance carrier can tell if you're using it or not. Brother.
Another point he made about sleep apnea, and I think it's a strong one and should be shared, is that it is quite common in PSP patients. I know for myself I've blogged about how exhausting PSP is. And it is. But it seems now an even bigger component to the chronic exhaustion very well could be undiagnosed sleep apnea. I have been so bloody tired for so long; years, actually. He said the apnea could've been going on for that long. He also stated it's particularly DANGEROUS in PSP patients, one of the reasons being that apnea over the long-term is also damaging brain cells apart from the damage the PSP is doing to brain cells.
A very frequent symptom I've read on other's blogs, whether a suffer of the caretaker of a sufferer, is the person's extreme exhaustion, often leading to napping much of the day. (I have been also napping much of the day for quite a while now). I would very much encourage you if you haven't already, to visit your Doc and request a sleep study to determine if apnea is involved. Again, mine came as a total surprise to me, and next, the severity.
Although this is a set-back and not good news in terms of the type of apnea I have, I look forward to seeing how I feel energy-wise when I'm as adjusted as adjusted can be with my new machine/s.
Love To All,
Judy J
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JudyJ
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I'm at a loss to know what to say! Sleep Apnea! PSP really is the disease that keeps on giving isn't it? I hope that the oxygen gets sorted out very quickly and that you can find a mask that suits your needs.
hi judy i have had sleep apnea for about 4 years now i have been waking up at all hours since i have had it \\ i wear a full mask which does not look very becoming but i found that i could breath properly with it as against the single ones that just cover your nose i found that i kept wanting to breath out of my mouth which of course is no good\\ i remember those sleep studies very well it was the worse nights sleep i have had wires and allsorts of parafinalia over my body but now just put my mask on at night and take it off after about 4--5 hrs sleep in fact im taking it off when im still asleep but wake up after i have off then i get up and watch tv for the rest of the night or morning because i just cant lay in bed no matter what time i wake up i feel like i have to get up so it could be anytme after i go to bed really so some nights i might only get a couple of hours of use
out of it i told the specialist i go to see about my sleep apnea and he said to me do you think this is because of your psp i mean hes asking me hes not telling me then charges me a $150 i think they get money for old rope \\ when i first got sleep apnea he said you will have to buy this
machine and mask when i ask how much it was i nearly fell through the roof he said we will lend you one until you are ready to buy one so i done that after one weeks i decided to buy one i too;k there machine back to them after a week or so ii got a bill for 500 dollars they said that ants had got into the machine and it would cost this much to get them out i refused to pay it and he done hes block and i got excited and told him he was on a bloody good racket and i said to him arent you insured for letting people have your machines but he did not answer me anyway the long and the short of it is i ended up\ buying a machine and mask for about $2000 and afterwards i found out that my health fund did not cover the costs of the mask which was about 250 dollars
at that time i believe and i cant remember whether they gave me a little bit back on the machine or not so the morale of this story is dont trust nobody and always check up with your insurance before you buy but really i had no choice as i was told afterwards that i could have had a stroke
from not breathing properly with the sleep-apnea i nearly had another stroke when he told me the price of the machine and mask \\ ive already had one thank you for your patience take care of yourself by the wa the machine he \said i could have for a while would have been at a cost peter jones queensland australia psp suffereer
Hi Judy, hope you are well today. I was interested to see your comments re anaesthesia as in the news in the last few days they have pointed out the anaesthesia after the age of 65 years can accelerate neurological problems including things like dementia and Alzheimer's and I have no doubt in my mind that it could affect older folk with PSP causing them to enter end stage suddenly. So in my humble opinion it is wise of you to decline the idea of operations.Not because of your age but more because not enough is known about PSP at the moment. Did they give you any more practical ideas for better sleeping?
Judy, I love reading your trials & tribulations, you have the ability to explain things so clearly. This dreadful PSP/CBD is so poorly understood by all but few professionals. Even neurologists write suffers off by saying - "there is nothing more I can do." General nurses have no idea about it even after explaining what it is and leaving information for them to read. I hope the new kit will help to alleviate the sleeping problem and give you re-newed strength to fight the next battle. Best regards.
I found your post really interesting. My hubby was diagnosed with PSP in Nov 2011 but he complained of not being able to breathe from about a year before that. In fact, he went for surgery to sort out his nasal problems. I always doubted that he had a real problem as he was able to breathe through his nose with his mouth closed but he was adamant. I know he had apnoeia as I used to hear him stop breathing at night and nudge him to start breathing again. Post the surgery that has improved as has his snoring but he still takes a homeopathic med for his sinuses every day. The Neuro has said it's fine that he takes it, and although I don't like him taking ´unnecessary´ meds he takes comfort in taking them and I don't see the point in depriving him of a small comfort when he's dealing with everything else this horrible condition makes him go through.
Still, in hindsight, I wonder if the anesthetic brought on the PSP or if perhaps breathing problems or apnoeia are prevalent in PSP sufferers?
I lost my husband to PSP last year,but I couldn't resist commenting on the sleep apnea situation. I have, practically all my life, complained of being totally fatigued all the time and went to the doctor whilst Chris was still aive to complain even more about the fatigue. I was very surprised to hear him say that he thought I had sleep apnea and even more surprised when the results came back as positive. I have to say that I have been wearing my mask (one that goes just over the nose) at night now for over two years and find I sleep much better with it on than with it off, even to the point of ensuring that I take the darned thing with me if I am visiting anyone. I was told that, for it to be effective, I would have to wear it for at least 4 hours each night. Not necessarily all in one go, but a total of 4 hours is important. The other thing that some people might not be aware of is that in the UK you do have to notify the DVLA and you do have to accept the treatment to be able to coninue to drive. I just feel so much more alert and sleep so much better now that I am used to the mask that I won't be without it.
Hope this might be helpful and give you some more insight into the sleep apnea situation.
Glad you pursued that for yourself and that it has helped. Sleep deprivation is the worst. I didn't understand that youre right to drive could be jeopardized if apnea is diagnosed, and with willingness or unwillingness for treatment being a consideration if you can continue to drive, if I understood you right.
Here in the States, each has it's different laws. Some states require a medical care provider must report an unsafe driver due to a medical condition/s to their DVM. Then the DVM intervenes, investigates, and usually revokes the driver's license.
In Minnesota, where I live, it is a self-reporting state. Medically professionals don't have the right to report a patient. A person is to self-report within 3 months of an incident of loss of consciousness and/or a medical condition that might impair your ability to drive.
I haven't turned myself in yet; I haven't driven since that day in March in which I almost passed out behind the wheel. Don't know what sanctions would be in store for late reporting since I'm not driving and doing no harm.
After these last several months, I've changed my position pretty much and think Doc's should have to report by law persons who are at risk of having a medical event behind the wheel in which great harm can be done. Have read with regularity accidents that are caused by a driver who suffered a 'medical emergency', with sometimes fatal consequences.
This all so interesting....my husband Gerry was miss diagnosed in Jan of 07 with Parkinson's but a year before that he was diagnosed with sleep apnea. We had no idea any of this would be related. He hasn't worn the c-pap for a few yrs now, he just doesn't like it. He was sent to the University of British Columbia just over a year of Parkinson's diagnosis to be diagnosed with PSP. He's now scheduled to go to a care home when a bed becomes available. His mobility is almost non existent except from his scooter chair to his lift chair. It is his choice to go to the facility. He is a big man and I can't really handle him. He fell backwards in th bathroom about a week ago and it took a very long time to get him up and back in his chair.
I was reading him your post Judy about your vivid dreams and he says he relates. He says he has some crazy dreams. I don't believe they are as strong as yours are as he doesn't have the physical experience. Never the less it seems that the sufferers seem to have a lot of similarities.
It's very difficult to watch this big man that used to be so full of life be taken down in such a humilitating way. No one deserves this.
Oh, I'm so sorry Linda, for both of you. As both a caretaker myself and now a PSP suffer, I have a deep understanding of both sides. I will keep you both in my heart and prayers.
My Neurologist unequivocally stated PSP and sleep apnea are related and is very unsafe in PSP patients. Is there anyway you can convince him to see the Doc about this issue alone and start using the C-PAP again? I'm repeating myself from my blog, but my Doc acknowledged it's a rough go for at least the first month. The trick is to get the mask that fits the best but along with that he means is the most comfortable.
Luckily this Company that will be working with me does home visits, too, to adjust machine settings, mask fittings etc. (They have yet to contact me.). Perhaps that was your experience when he had his C-PAP, too, but my Doc was so adamant about sleep apnea, especially central sleep apnea, and it's dangers in PSP patients, I felt compelled to pass this along via the blog.
I can understand why he gave up on it tho back then. The Clinician put mine on and my instinct was to fight, fight, fight, the thing. No matter how many adjustments she made to the mask and/or controls on the machine such as humidity etc., it didn't do diddley for me. In fact at 4:00 a.m., I ripped it off my face and shouted in the mic that I wanted nothing more to do with it Back she came with a voice that was a combo of soothing yet firm. I was staying, with the mask on, she said; only had a few hours to go.
But it was rough. My Doc did acknowledge that my apnea didn't improve at all with the mask on, which is why also thinks the super-sensitive, second machine will be me necessary in my case.
Again, I never considered myself a poor sleeper at all; not a bit, before I got those results. As to my dreams, it is such a BLESSING to know that someone, your husband, understands what I'm talking about. Until your post, and a lifetime of telling others what my dreams are like, no one could relate until now. I actually look forward to go to sleep because my dreams are so vivid and intense, all senses involved, in color, etc., they're actually grand adventures to me.
That is until over this past month, the dawn dreams have become incorporated with illness and pain and I wake up with those symptoms. I'd be interested in knowing if when your husband dreams like that, if they are normal dreams in which the pain/illness incorporates into the dream, or if he considers them nightmares. My dreams are normal dreams, or the grand adventures I referred to, but physical symptoms arise and incorporate into the dreams but the main theme of the dream is the same. Whatever it is I'm doing in the dream just gets a lot harder because I keep falling down (feeling the pain), or my movements in my dreams or slow and painful, and also vomiting in my dream, around whatever else is going on.
It's exhausting actually! The dreams themselves; they're so physical with or w/o the pain/illness creeping in. But I find them fascinating and can figure out a lot of things in my dreams. But considering how exhausting the dreams themselves are, then factor in severe sleep apnea, and 'viola! It's no mystery anymore why I am past exhausted during the day.
It has to be beyond heartbreaking to watch what this disease is doing to your husband. You stated he is a large man. How hard it must be to see him so vulnerable. How you managed to get him up on your own after his fall is amazing. My falls are a huge concern to my girls who live with me, ages 21 and 22. There have been falls in which I needed one or both of their help to get up; they say I feel like 'dead-weight' tho I'm a slight person. They also get/are scared that I will seriously hurt myself during a fall which is a fact I can't bluff them with reassurance because it is possible. So it's evolving into a situation if I feel well enough to be up and around, it's anxiety producing, especially for one of my daughters. Don't know quite yet what to do about all that except to try to move toward using more adaptive equipment like a K-Walker and even wear a helmet if I need to be up but it's not a good balance day.
So, my heart goes out to both of you. Please stay in touch, okay? You are not alone, nor is your husband.
Thank you for your reply and concern. I will try to talk to him about his c-pap machine again. He can be a stubborn guy as well so wish me luck! Haha. Thanks again and have a good week.
I do wish you luck; you have a tough task on your hands, for sure. As serious as my apnea is and logically knowing how much I need it, truthfully, I'd rather do w/o. One night wrestling with that thing during the sleep study was one night too many But I'll "Stay Calm And Carry On".
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Back she came with a voice that was a combo of soothing yet firm. I was staying, with the mask on, she said; only had a few hours to go. 
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