HELP!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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kaiasgram
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Re: HELP!

Post by kaiasgram » Mon Nov 24, 2014 9:34 pm

Koree17 wrote:I will definitely keep updating this. I want to thank all of you. My own family thinks im a hypochondriac (just like they did when I told them for years I had narcolepsy). I know something is wrong and im not going to let him cut me off and answer me before I finish asking a question next time. It's just nice to know im not crazy in thinking things are not working.
Right. The numbers from your machine are real numbers and they demonstrate that something is wrong. You're not crazy!

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archangle
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Re: HELP!

Post by archangle » Mon Nov 24, 2014 11:40 pm

Zoom in on some of the central apneas in SleepyHead and see how long they are and how "complete" they are. Post them.

Sometimes, NeilMed Sinus Rinse can help with mucous. It's fairly cheap from your local Walgreens or other pharmacy. It's worth a try.

Good luck.

Please enter your equipment in your profile. There's a link in my signature line about how to do this.

Your machine is a 750p, which is a PR System One REMstar BiPAP Auto with Bi-Flex.

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Koree17
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Re: HELP!

Post by Koree17 » Tue Nov 25, 2014 12:59 pm

I was asleep for most the night last night. The only time i woke up was to take the meds. I'd also like to add that I threw up in my mouth while trying to fall asleep for the first time. It just shot right up with minimal resistance, so i'm sure if its happening while im awake its happening while im asleep.

Image

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kaiasgram
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Re: HELP!

Post by kaiasgram » Tue Nov 25, 2014 5:26 pm

Koree17 wrote:I was asleep for most the night last night. The only time i woke up was to take the meds. I'd also like to add that I threw up in my mouth while trying to fall asleep for the first time. It just shot right up with minimal resistance, so i'm sure if its happening while im awake its happening while im asleep.
You are a patient in trouble with your PAP therapy and I hope you can get more comfortable with pushing for some immediate attention from the doctor who's overseeing your treatment. Vomiting as you're falling asleep is dangerous, and you are on a very serious medication that might make it difficult for you to wake up should that actually happen while you're asleep.

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Koree17
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Re: HELP!

Post by Koree17 » Wed Nov 26, 2014 8:06 am

I've left a message for my doctor saying how many clear airway apneas I've had over the past 3 days. 72 in 8hour night, 64 in 7 hour night, and 42 in a 5 hour night. I've got the waking up sick thin down now, raising my bed helped tremendously. But now im beginning to get frequent headaches which is not something that typically happens to me. I'm planning to continue using it as long as I can tolerate it until I hear from him. I'll be sure to let everyone know how things turn out.

sleepstar
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Re: HELP!

Post by sleepstar » Wed Nov 26, 2014 10:04 am

Koree17 wrote:I've left a message for my doctor saying how many clear airway apneas I've had over the past 3 days. 72 in 8hour night, 64 in 7 hour night, and 42 in a 5 hour night. I've got the waking up sick thin down now, raising my bed helped tremendously. But now im beginning to get frequent headaches which is not something that typically happens to me. I'm planning to continue using it as long as I can tolerate it until I hear from him. I'll be sure to let everyone know how things turn out.
Did you have a MSLT during the day to obtain the diagnosis of narcolepsy? Or was it based on the cataplexy as well?

Koree17
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Re: HELP!

Post by Koree17 » Wed Nov 26, 2014 10:33 am

I never had a day time sleep study because it was never necessary. I have horrific cataplexy without xyrem and I show every other symptom as well. Plus something about my rem cycle acting like it typically does for narcolepsy.

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kaiasgram
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Re: HELP!

Post by kaiasgram » Wed Nov 26, 2014 4:21 pm

Koree17 wrote:I've left a message for my doctor saying how many clear airway apneas I've had over the past 3 days. 72 in 8hour night, 64 in 7 hour night, and 42 in a 5 hour night. I've got the waking up sick thin down now, raising my bed helped tremendously. But now im beginning to get frequent headaches which is not something that typically happens to me. I'm planning to continue using it as long as I can tolerate it until I hear from him. I'll be sure to let everyone know how things turn out.
Glad to hear the update, and glad you've sent those numbers to your doc. You should get a prompt reply.

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Koree17
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Re: HELP!

Post by Koree17 » Thu Nov 27, 2014 12:13 pm

Ok so new update. Remember how I said my doctor told me the Xyrem is causing the mucus mucous, but I felt it wasn't because I have no mucus when I use Xyrem without the cpap. It turns out Xyrem is causing the acid reflux! So Xyrem is what's making all the sickness and the horrible sleep. I've read that many doctors will not prescribe both or will often take ppl off Xyrem until apnea is under control. By itself it makese sleep great, but it's a danger bc of the apnea, but it turns outs it can also drastically reduce the quality of cpap therapy bc of the really bad acid reflux. So it seems like it's more of an issue of what is more dangerous, using with or without the cpap. then again maybe not bc if I'm not breathing for seconds at a time with the mask on I could still die either way I suppose. Talk about a crappy situation, no Xyrem means cataplexy to the point I can't walk around my own house safely >.<

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jencat824
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Re: HELP!

Post by jencat824 » Thu Nov 27, 2014 9:05 pm

Koree17,

I know you suffer cataplexy symptoms but is it possible these could be a type of seizure? Without the MSLT did the Dr use other factors to determine without a doubt the narcolepsy.. I'm only jumping in here with this question because I have narcolepsy & seizures that were thought early on to be just cataplexy episodes, but were soon determined to be seizures. I have a complex seizure disorder & the seizures are quite similar to cataplexy. The difference, which the Dr determined by direct observation (I had a seizure during an appointment) was that I lost consciousness. I didn't realize this in the early phase of what I now refer to as my 'seizure hell' years.

During a cataplexy episode are you aware of the complete loss of control, or is the onset kind of 'fuzzy' & you then return to normal slowly? If its fuzzy, you may want to ask your neuro about your EEG results. If there is any question about the actual physical symptoms of an episode, you might ask the neuro about undergoing a 6 day seizure monitoring test. This is done in a hospital and includes detailed sleep study data along with about 3-4 daytime mini-MSLT studies. This test yields some very detailed data. It is an unpleasant 6 days, but gets loads of various types of data, including actual recording of you having an episode which can determine for certain if episodes are indeed cataplexy or seizures.

I may be way off base here, but a few things you have said sparked the question in my mind. One of these is that returning to your non-medicated state meant you wouldn't be safe at home because of numerous untreated cataplexy episodes. I had reached this stage when my Dr decided to try a seizure monitoring study. It lead to my long road to recovery. I'm only bringing this up on the off chance it might help you. If you think the idea has any merit, you can discuss it with your Dr.

Either way, I agree with everyone you are in danger with PAP therapy woefully out of whack. Now, without the Xyrem, life is now dangerous in another way due to these cataplexy episodes. Hang in there & keep posting updates. Lots of folks here care.

Jen

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Koree17
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Re: HELP!

Post by Koree17 » Fri Nov 28, 2014 5:53 am

Thanks so much for the thought out response. I am without a doubt positive I have extremely severe cataplexy. I never lose conciousness. Full awake while collapsing trying to fall the best possible way I can, which is pointless In most events. You reminded me of something though. Since seeing my Dr. I have had two incidents I suspected to be seizures. I've lost conciousness and had VIOLENT shaking and pain I my limbs. He has shrugged it off and said none of my medications can cause that. If I think I'm in danger please call 911.

Could my centrals have caused these seizure like episodes?!?! It was first thing in the morning after wakin up taking my meds and passing back out. My centrals have been consistently bad the entire 5 months I've seen him. If ive had these episodes bc he just never looked at my centrals and how high they were I'm going to be pissed.

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Re: HELP!

Post by Koree17 » Mon Dec 01, 2014 4:03 pm

!!UPDATE!!

Doctor called me first thing this morning and told me to come in today asap. Yes the Xyrem is causing my centrals. I need an ASV. My Xyrem dose is lowered until everything is straightened out. I have learned a pretty big lesson from all this. Don't always go with what the doctors say blindly. If I had never looked at the data myself they never would have seen the nights I have close to 100 centrals. They look at it in averages. Since after 3-4 days of really bad centrals I would hardly use the machine but a few hours a night it averaged out to not look so horrible.

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kaiasgram
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Re: HELP!

Post by kaiasgram » Mon Dec 01, 2014 5:35 pm

I'm glad (but not surprised) that your doc snapped to it when you sent your CA numbers to him. It was an alarming situation. I hope the next steps happen quickly for you, and keep updating us please.

And you're right about the importance of having data capable machines and LOOKING at that data!

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Koree17
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Re: HELP!

Post by Koree17 » Mon Dec 01, 2014 8:18 pm

I am certainly going to advise everyone to learn as much as they can and keep an eye on their data. I could have had this straight 5 months ago if I had done so. I REALLY hope this new titration happens soon because if not I'll be suffering through a disney world trip. Wouldn't be the first time I had to stay in the hotel and sleep an entire vacation but I'd really like it settled by then. It all depends on if the insurance takes a week to make up their minds like they did for my last study

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Drowsy Dancer
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Re: HELP!

Post by Drowsy Dancer » Mon Dec 01, 2014 8:27 pm

Koree17 wrote:!!UPDATE!!

Doctor called me first thing this morning and told me to come in today asap. Yes the Xyrem is causing my centrals. I need an ASV. My Xyrem dose is lowered until everything is straightened out. I have learned a pretty big lesson from all this. Don't always go with what the doctors say blindly. If I had never looked at the data myself they never would have seen the nights I have close to 100 centrals. They look at it in averages. Since after 3-4 days of really bad centrals I would hardly use the machine but a few hours a night it averaged out to not look so horrible.
Wow. And people wonder why we are so opposed to "bricks" around here.

I hope you get better treatment soon.

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