New to Forum - Psychiatric Blackouts

[Shooting Star]

I am a 73-year-old female, new to this forum, but have been using a CPAP since about 2006 - can't find records to verify exact date. Original equipment was a fixed pressure ResMed CPAP. I used that machine until about August of this year. Tried a ResMed AirSense 10 Autoset for Her. While I liked many things about it, there were a couple of things that made it seem like it might not be the best machine for me. A few days ago my supplier authorized a switch to a Philips Respironics DreamStation Auto with AFlex. In looking up something about CPAP, came across this forum and discovered the SleepyHead software. I have downloaded that, and am attempting to learn whatever I can so I will be able to communicate with a doctor.

I currently do not have a doctor helping me with any of this. I have, over the past year or so, been having random blackouts. I have found myself driving a vehicle in the middle of the day not knowing how I got there, wakened disoriented not realizing exactly where I was (my own home), blacked out and spilled hot coffee over myself and my dog not knowing this had happened until morning, evidently fallen and hit my head on something resulting in a bump on the back of my head, fallen again and evidently hit my face on a lamp on the way down. I was referred to a neurologist, actually have seen two neurologists. Passed the cognitive test for dementia, various EKG, EEG tests by a neurologist (second neurologist) hospital emergency room. I have a history of diagnosis of depression with psychotic features. I had, several years ago, been on trials of a whole lot of antidepressants and antipsychotics. This was, in part at least, prior to any CPAP therapy. They did not, for the most part, if at all, help.

I hear voices. The voices have told me specific foods that I may and may not eat, even down to brand names, so have been on a very regimented diet for about three years. I think the one voice I consistently hear is God. Some of the others - I'm not sure exactly what is going on all the time. I have had an out-of-body experience in the past, at least one definite visual hallucination.

My primary neurologist, the doctor helping with the sleep problems, prescribed a very low dose of Nortriptyline (10 mg) nightly to help get me through the night without waking, possibly sleepwalking and injuring myself. This was while I was using the Autoset 10 machine. I noticed I felt a little better, one particular day near the beginning of that especially so, then the effect seemed to wane. The doctor increased the dose to 20 mg. Again, felt better, but still not where I need to be. Then I had an episode of falling during the day, and the neurologist discontinued the Nortriptyline. Within about a week I felt awful - worse than before the original 10 mg. I requested to be put back on Nortriptyline and asked for a referral to a psychiatrist. The neurologist put in a referral, said I could take 10 or 20 mg. Nortriptyline at bedtime - my discretion of dose. He said he did not know what was causing the blackouts, and withdrew from my case. I respect that decision, think he is an excellent doctor.

I am on Medicare with an excellent supplemental policy, but there are few psychiatrists who accept Medicare. I do have a clinic lined up who will see me, am on a waiting list for cancellation, but the earliest available appointment with a counselor will be in late January. Then another wait to see a prescriber. My goal is to be a proactive patient - to learn how to interpret/use the Sleepyhead program so I can see exactly what effect some of these medications they might want to put me on might have. In the meantime, I have an excellent internist, but am in limbo having a specialist on this particular issue. I do not want to make any unauthorized changes to settings. I want full doctor involvement, but I want to know enough to know what to ask, understand the terminology of what might be said.

The CPAP supplier destroyed the data from my recent ResMed machine when they cleaned that machine on exchange for the new DreamStation. I have a modem, oximeter capable, in the DreamStation. I think the supplier may still have my data, because they faxed something to the neurologist's office a couple of days ago. I had hoped that might be on a card, but it is a printed report. That data contains information surrounding a couple of episodes of daytime blackouts, plus the time of initial use and discontinuation of Nortriptyline. I am hoping to be a able to retrieve it. In addition, there was a data card for a couple of months recent data in my very old ResMed. The supplier may have that information, but not on a card. I am hoping to retrieve all, but not sure SleepyHead would recognize the format of the older information even if I am able to retrieve it.

Any input is appreciated. I do not know where to start.

Thank you.

[Grace~~~]

I think the one voice I consistently hear is God. Some of the others - I'm not sure exactly what is going on all the time.


Any input is appreciated. I do not know where to start.

Thank you.

Along with seeking excellent medical care, you may also want to speak with a Priest?

When I finally got the courage born of desperation to reach out I didn't even have the words?
Many (pray all) Orthodox Priests will be able to give you insight. I came as a southern BibleBelt girl
who didn't even know the definition of Eucharist let alone Orthodox Catholic.

I am sure God is in the internet as He is everywhere, so I will not fear answering your post.

Here is just one link ... but you will have to reach out on your own ...
Sounds like you have guardian angels who will guide you.
I wish you well.

~~~grace

http://www.fatheralexander.org/booklets ... deev_e.htm

[Goofproof]

First Stop Driving!

The rest is left to doctors, see one or more ASAP. Jim

I do'n see this as a XPAP problem, it's way more important to get it fixed.

[49er]

Shooting Star,

Could being on the medications long term be causing your problems? How were you diagnosed with depression with psychotic features? No obligation to respond but just curious.

49er

[SleepyMcgee]

I think the one voice I consistently hear is God. Some of the others - I'm not sure exactly what is going on all the time.


Any input is appreciated. I do not know where to start.

Thank you.

Along with seeking excellent medical care, you may also want to speak with a Priest?

When I finally got the courage born of desperation to reach out I didn't even have the words?
Many (pray all) Orthodox Priests will be able to give you insight. I came as a southern BibleBelt girl
who didn't even know the definition of Eucharist let alone Orthodox Catholic.

I am sure God is in the internet as He is everywhere, so I will not fear answering your post.

Here is just one link ... but you will have to reach out on your own ...
Sounds like you have guardian angels who will guide you.
I wish you well.

~~~grace

http://www.fatheralexander.org/booklets ... deev_e.htm

Are you suggesting that this is ACTUALLY God speaking to her?

I am religious and certainly believe that speaking to a priest is fine but she needs a Dr. ASAP. There is no excuse for a two month wait to see someone. Do you have any younger siblings or children that would be willing to help you navigate the medicare system? If my parents (they are similar ages to you) were hearing voices they would be at a Doctor within hours. Whether it was in the emergency room or a private practice.

[Julie]

People... please leave God out of it for the moment...

Yes, do stop driving or face killing a child or more. And if your doctors have not provided sufficient care for you to deal with (the voices, blackouts, etc) you must go either back and demand better care or find new doctors, possibly even through a local emergency dept. You should take care of your apnea and cpap, but you have more urgent things to deal with today. Please get some serious and effective help... then we can help you with Cpap. How do you know your blackouts are 'psychiatric'? That's a strange connection. Also you need to look into what you eat - your voices could be 'feeding' you a lousy diet and you want to stay physically healthy if nothing else.

[Shooting Star]

I had no energy, sleep issues, just basically could not function. My husband - and we did love one another - did not know how to help. I'm not sure why he thought I was insane - was not hearing voices at the time - but somehow he got that idea. He filed for divorce behind my back, just in case I broke. Somehow, don't remember now exactly how it came about, I found out. I was so angry I threw all his things over the second story landing of our house and kicked him out.

I had not worked in years. I basically started acting totally out of character, supporting myself by paying one credit card off with another, started hearing voices, felt waters rippling over me - was told this was holy water that I was being baptized. I was happy part of the time, but some of the voices were demeaning - not the one voice, but others. I went to a psychiatrist, was diagnosed, started on the merry-go-round of psychiatric medications, with their long trial periods, and very little help.

At some point the voices told me to take two handfuls of pills. I thought fine, if you want me, take me. Immediately after taking them I was told to drive myself to a hospital. I almost didn't make it.

I want to use this CPAP data to see what effect various psychiatric medication has on my brain. Currently, in my experience, a lot of this medicating is guesswork. Even for traditional medicines, for blood pressure for example, guesswork is involved. I have not been on psychiatric medication for years - just refused it. The negatives far outweighed the positives. With the recent blackouts, seeing Nortriptyline, in a very minimal dose, can have some effect on sleep patterns, used in conjunction with CPAP, I am willing to try again. But very reluctant to go through the lengthy trial of one medication after another to try to find something that will help. I think sleep reports, in-depth and accurate, could be invaluable diagnostic tools for many things. Having an EEG in an emergency room when you are not having a mini-stroke might show very little. CPAP data, on a regular basis, might. It might show some difference in early trial of a psychiatric medication, saving a lot of time and wasted energy from pursuing some medication that is not going to accomplish what it needs to. I spent maybe five years trying to track down any medication that would work, and finally gave up. Most people here are looking at CPAP therapy as an aid to getting a good night's rest. I am looking at that too, but am more interested in all the potential diagnostic/treatment knowledge the data generated by these machines might have to offer.

[Julie]

Good for you for trying to make things work and look for answers - you sound quite intelligent... but I just wish you'd consider some of the things I said in my other note as I feel they are pretty urgent, for everyone's sake.

[Sir NoddinOff]

I'm sorry but this seems WAY out of CPAPtalk's depth. You need medical and possibly psychiatric help to get this sorted out. Note: I don't mean that in a pejorative way, just in a practical helpful way, so I hope you take it as offered with no hard feelings.

[avi123]

Shooting Star, I know about medical ailments that cause the symptoms which you describe. I am almost certain that a CPAP treatment does not cure any of them. I am also familiar with the problems that you have with Medicare. In my opinion you should go to an emergency department in a hospital, any hospital, public or private. The physicians in an emergency department are knowledgeable how to go about your problems. They will introduce you to professionals. All hospitals physicians accept Medicare patients. It does not need to be a rush approach and can take time. So have patience.

[kteague]

While CPAP cannot fix everything that goes wrong with us, ineffective CPAP use can exacerbate many problems and resultant sleep issues can cloud the picture when looking at contributing physical and mental issues. Please do take steps to be very sure your CPAP settings are doing their job. Having a properly oxygenated brain and healthy sleep gives one a good baseline from which to assess other issues. I'd like to add proper nutrition to that. Does your doctor periodically run lab tests to make sure all your basic levels are healthy? When my sleep deprivation symptoms were at their worst, I would engage in daydream-like conversations that started in my head then I'd find myself speaking a line from the scene out loud and it would startle me out of it. I guess those would be called hallucinations. Also, a medicine I was on caused sleep attacks as a side effect, and being overcome by one felt like passing out. I'm just saying, ask your doctors to be sure there is no other answer for your symptoms to assure you are not simply treating side effects. Are you on any meds known to cause central sleep apnea? If so, it may not be routinely picked up. Talk with your doctor and ask if any meds you are currently on could be responsible for any of your symptoms. Please don't self treat on any perceived need for med changes - working with your doctor is important.

Have you been evaluated to rule out narcolepsy? I only ask because passing out and hallucinations can accompany that diagnosis. Maybe your docs already know your episodes don't fit the criteria - never hurts to ask.

By ruling out the above, you will better know what you are working with. I'm not sure how you would go about finding out if there's been a pattern of these problems in people who participated in the same clinical trials you did. I would think it should be reported just in case. Just not sure how any of that would work.

Best wishes in settling some of the doubts and questions you have about your situation, and in working with your doctors to find the solutions that will work for you.

[Shooting Star]

I need to apologize for not responding to individual messages. Have not been able to see how to do that.

Those who said I should not drive are correct. Am including the text of a message sent to a cousin, one of the few people to whom I can communicate at all about any of this:
"I am going to have to give up driving, at least until this gets resolved.  After the forum comments, and the voices telling me I still could drive, and my actually driving home, I had a dream of a car crash and a child on the passenger side of another vehicle being killed.  The driver in the vehicle at fault was not me, but it very well could be.

The last time I saw the neurologist he told me to be careful not to let the voices tell me to do anything bad.  I told him I would be.  This is a perfect example of being led astray.  Being without a car, and not being able to use cell phones or public phones, and getting confused with bus situations because of my hearing.  I'm not sure how I'm going to cope.  Getting out of the house, the freedom to come and go as I felt the need - very difficult to give up.

My hearing aids are allegedly Bluetooth capable - these hearing aids that have been the bane of my life - I don't trust that they are - have seen no evidence of that - but will try to find out more, ask about phones.  I can barely use an amplified landline in my office at this point.  You do not want to hear all I might say about phones, people at the other end of phones, phone manufacturers believe me.

Psychiatrists are impossible for Medicare patients to find because Medicare pays doctors a fraction of what a non-Medicare provider is required to pay.  A normal doctor is paid for 15 minutes of his time.  A psychiatric session can, and usually does, last much longer.  Medicare requires you see both a counselor and psychiatrist to help with that situation, but not all psychiatrists have an affiliated counselor.  There are problems with that situation too, because of potential communication gaps between the counselor and prescription writing psychiatrist. There is only one clinic within a reasonable distance here that takes Medicare."

Also, I do think Narcolepsy, of some sort, is a possibility. Am planning to contact my internist to see how to follow up on this. Thank you, KTeaugue, for posting this suggestion.

I live in a multigenerational situation, with a daughter and two grandsons, one of whom is married and has a stepson and baby. All work nights. My not driving is going to be difficult for all concerned.

Some have felt this post is off topic. It may be, but I think sleep apnea equipment has the potential to be used for diagnostic purposes for many things, and evaluative purposes for the effectiveness/side effects of medicine for many conditions. I have been very disappointed in the information available through programs such as Rispironic's Dream Mapper, ResMed's MyAir. Users need to know more to be able to communicate effectively with their doctors, and I suspect some of the reports doctors themselves receive are not giving them exactly the information they need either. SleepyHead software has tons of potential, needs input from both users and professionals.

I do believe in a Universal God. I think God works in unexpected ways, that the spiritual side of life is huge, but that we need to deal with practicalities.

Thank you, all, for your help.

[Julie]

Have you tried changing your hearing aids? I wonder if they are responsible for your 'voices'.

[chunkyfrog]

Hearing aids are expensive--also not covered by Medicare. (And good ones just don't DO that!)
Unfortunately, psychiatric help is often withheld until the sufferer displays erratic behavior in public.
Definitely not suggesting such a thing, but a call to one of the hot lines might get the ball rolling for you.
Freaking people out is extreme.
DOES ANYONE ELSE HAVE A BETTER SUGGESTION? PLEASE!!!!!

[49er]

I have heard a lot of good things about this group. They teach people to make sense of their voices.

http://www.hearing-voices.org/

Hopefully, there is a support group near where Shooting Star lives.

Also, if Shooting Star doesn't mind stating where she is located, I could see if there were any other resources nearby that might be helpful.

49er