I'm Around - Sorry to Worry Anyone

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Tue May 24, 2011 12:34 pm

SleepingUgly wrote:
Madalot wrote:I forgot to mention that I DID ask about this. They want to try addressing the cause first (Mirapex) and if that doesn't work, we'll discuss the Nuvigil (sp???)
OK, then an answer is right around the corner, and you just have to hang on until then! It makes sense not to start Provigil or Nuvigil (both are considerations) while you are starting Mirapex because the chances are VERY high that you will feel better with Provigil/Nuvigil and then you won't know if it's because of the Mirapex or not. So hang in there until you get through the Mirapex trial, and if it doesn't help enough, you'll do the Provigil/Nuvigil. In the meantime, take naps and view it as a solution to a temporary problem, and don't ascribe any more meaning to it than that.
I want to clarify this a bit by saying I DID ask, but they never said we would definitely do it. Right now, I am on 7 prescription medications. That's a lot for anyone. So many of these medications cause liver damage (something I already have) and are contraindicated for people with neuromuscular diseases, which is another problem I face on a regular basis.

So I asked and they said we would discuss it, but there's no guarantee they'll find it appropriate for me.

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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Tue May 24, 2011 12:53 pm

JohnBFisher wrote:
Guest wrote:I could register, but it would not make my words more true.

You don't want to hear what I might have to say that could help you. So long, and good luck with the sympathy, because that's apparently the only thing you can get here if you block out all the genuine help.
I would say "What an idiot!". But that would denigrate the mentally challenged. Anyone who is so full of themselves that they believe they are the one and only person with the truth is a menace to themselves and others. The world is littered with the remains of such self-important people, whose last words were "See, this is how you do it! ...". The shame is they take innocent people with them.
I agree with you, John. And apologies to anyone that was offended for calling "Guest" an idiot, but I did it and will leave it there.

My former Respiratory Therapist and I, with my doctor's blessing, did a ton of "dial winging" a while back trying different modes and settings. No matter what we tried, there were problems and we went back to my current settings. When I spoke to my NEW Respiratory Therapist and told him of the different modes and settings, HIS response to some of it was that it was no wonder we weren't successful. Some of the modes, according to him, that we tried are INVASIVE modes intended for tubed and trached patients and are not intended for use non-invasively with a mask. I would have blown him off, but he was able to explain WHY. Yikes.

I did these things WITH supervision of a Respiratory Therapist AND Board Certified Pulmonologist. I would love to be able to just "dial wing" until I find the sweet spot, but my situation is complicated, perplexing the experts.

Guest's attitude that I should just do this stuff shows that he/she is arrogant and dangerous. I find it very "telling" that he's chosen to pick on me.

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Re: I'm Around - Sorry to Worry Anyone

Post by chunkyfrog » Tue May 24, 2011 1:29 pm

--Hmmm. Sounds like someone we've met before. . .
Now I need to find a mint.--(bad taste, etc.)
Keep your 'eye on the ball', Maddy. I'm pulling for you.

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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Tue May 24, 2011 2:00 pm

chunkyfrog wrote:--Hmmm. Sounds like someone we've met before. . .
Now I need to find a mint.--(bad taste, etc.)
Keep your 'eye on the ball', Maddy. I'm pulling for you.
Yeah, I'm trying to figure out how anybody could have been following my story "for years" when I've only been here and doing this since late January 2010. On top of that, "SAG" was not a name used in connection with my posts. I believe that "name" was retired before I came along.

Oh well -- been good for a laugh or two today.

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torontoCPAPguy
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Re: I'm Around - Sorry to Worry Anyone

Post by torontoCPAPguy » Tue May 24, 2011 7:57 pm

Madalot:
I came online around the same time as you did and have shared threads numerous times with you. What the heck?

I can tell you this; I deal with several Rx meds here as well and am trying to cut back by losing weight and addressing my physical afflictions head on. Not working worth a damn. I can tell you this, however, and that is that I have a plethora of specialists that I work with and anyone I don't like? FIRED! My cousin in NJ taught me this. He was diagnosed with Malignant Melanoma 20 years ago and given a year to live (WITH RADIATION AND CHEMO). He is still around and enjoying life to the fullest and I asked him how that is. He said the alternative sucks and he has not time for fools and misery. You want to be straight up with him; he's okay with that. He injects humour into each and every day of his life and shares it with those around him. He maintains a positive attitude regardless of what it takes to do so.... and to hell with you if you are bothered by the way he is doing things, like laying down for a nap at your home.

I have not read all of the posts but highly recommend that if your primary care physician is an SOB you need to dump him and find someone that you are happy with.

WHY are you awakening at night? It could very well be a sign of low SpO2 when you are approaching REM and your breathing gets shallow. Do you have a pulse oximeter like the Contec CMS50E? It will charge up and record for up to 24 hours and you can put its data up against the APAP machine's data to see what your story is. DO NOT depend on the MD's and quackeroos to cure you. I am still sensitive to noises and stresses and take Clonazepam before retiring and perhaps, should I wake up to make a water call at night I may take another. I sleep 8 - 12 hours a night and nap during the day...... I should say that fixing up my OSA revealed Atrial Fibrillation and lung dysfunction so that my SpO2 plummets at night when approaching REM. All the docs sent me for tests. Top to bottom and inside out. Scratching their heads I could wait no longer and a thread on here prompted my to pick up a 5L/m oxygen concentrator (the Everflo Q) and I began infusing my oxygen line with 3-4Litres/Minutes of pure oxygen.... by the time it reaches your nose it is diluted of course. BUT, take note! It raised my nightime oxygen levels above 90% to the 95% range and maintained it there. Shallow breathing at REM no longer causes my SpO2 to plummet and my body to arouse to tell me to breathe deeper. It no longer allows my blood pressure to skyrocket and my internal organs and heart work like a charm (well, maybe not my heart with aFib, eh?).

You too will find your silver bullet and resolve your problem. Understand, right now, from this moment forward, that you are not the person that you were before OSA. If you are overweight and really want to deal a blow to your OSA, lose weight. My docs have all told me that the weight of my neck alone is crushing my airway and causing my OSA. Be your own advocate no matter how difficult. You are a fighter and when you are having a bad day, as we all have, deal with it in whatever manner you need to. Take naps, watch TV, go shopping or visiting or see a movie. Good cheer injection time. There are still mornings where I just cannot get going and my AHI is 0.00 every single morning. The aFib takes its toll and if one thinks that OSA is a tough nut to deal with..... give Atrial Fibrillation a go. Makes OSA a walk in the park.

I know you have it in you and good thoughts are coming your way from here. Nothing but good thoughts.

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torontoCPAPguy
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Re: I'm Around - Sorry to Worry Anyone

Post by torontoCPAPguy » Tue May 24, 2011 10:07 pm

My apologies; I see now that our afflictions are different entirely. You apparently suffer from a neuromuscular disorder that I am not yet familiar with. I suffer from severe OSA (now treated but its like balancing a toothpick) as well as atrial fibrillation and a plethora of other things. I can appreciate difficulty breathing during the day as well as at night. I am surprised that they took your breathing difficulty seriously as in my case I had to plead before they all started to take me serious; my OSA got 'fixed' and unmasked Atrial Fibrillation, which, on top of my compromised lungs at 65%, produces great bouts of bone crunching fatigue and breathing difficulty (like sucking air through a straw).

Keep you chin up and be aggressive as hell. Tolerate no fools. Keep good cheer as a constant companion. You can and will beat this thing.

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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Wed May 25, 2011 5:32 am

torontoCPAPguy wrote:Madalot:

I have not read all of the posts but highly recommend that if your primary care physician is an SOB you need to dump him and find someone that you are happy with.
When I lived in the Washington, D.C. suburbs, I would have done this and done it quickly. I NEVER tolerated substandard doctors or medical care back then. Now, unfortunately, I live in a very rural area and the doctors in the city are, uh, different than I am accustomed to. In the DC area, I had thousands of choices in doctors. Here, I had about 20-30 and I've been turned away by over half of them -- because of my neuromuscular disease. I have to have a PCP close by for sudden illness and this guy does fit the bill for that. Finding a doctor that will oversee and coordinate all my issues isn't going to happen as the distance required to get to a larger city is more than I can physically handle.
torontoCPAPguy wrote:Do you have a pulse oximeter like the Contec CMS50E? I know you have it in you and good thoughts are coming your way from here. Nothing but good thoughts.
Yes, I have the 50F. I try to test a couple times a month these days. The last few tests I've done have been very, very good. My levels are staying above 90% all night.
torontoCPAPguy wrote:My apologies; I see now that our afflictions are different entirely. You apparently suffer from a neuromuscular disorder that I am not yet familiar with. I am surprised that they took your breathing difficulty seriously.
No apologies needed. As far as them taking it seriously - my research indicated (after the fact) that trouble breathing at night is the first sign of respiratory problems for someone with a neuromuscular disease. They did take it seriously because they were expecting it as a possible problem. Lucky me.

Yesterday was an incredibly good day for me. I only felt slightly bad and while tired, I was able to function and really didn't CRASH until around 8pm. I haven't had a day like that in MONTHS. So, I asked myself "What was different about TODAY?" There were two major things I could think of:

1. I adjusted the time that I take my pain meds. I have serious muscle pain in my legs and take pain meds in the evening. I WAS taking them around 6 - 7pm, but decided to take them LATER and see if would help with my sleep, perhaps lasting longer into the night.

2. I'm trying to eat something for breakfast earlier and see if it will help with the nausea. I WAS eating breakfast around 8:30 - 9:00, but am trying to eat around 7 or 7:30 now.

I am still taking Mirapex and my neurologist DOUBLED my dosage yesterday since I am able to tolerate it. I am now taking 0.50mg and will take this dosage for about 10 days and see what happens.

I am waiting on test results from a research study to see if we can pinpoint my neuromuscular disease. My current neurologists didn't test for it (because of cost and they didn't consider it a likely possibility) but a research study allowed me to get tested for free. My neurologist asked me yesterday if I had the results yet as he is anxious to find out as well. Testing positive for this specific disease would explain a lot of my problems, plus there's a treatment for it.

I HAVE also noticed that even though the report from my sleep study indicated that as long as I sleep on my side, my IPAP is staying at 14-15, I am waking up (ON MY SIDE) and finding the pressure between 17-19 every time. Pressure that high could be responsible for waking me up. I plan to discuss that with my RT today during my clinical visit.

Despite what "Guest" has said, I am NOT just sitting here complaining, whining and just looking for sympathy. I am trying things on my own, and being aware of what changes help or hinder. Just because I choose to be responsible and NOT adjust my ventilator settings on my own doesn't mean I'm not doing anything.

Edited to Add: Any "snarkiness" in this post is directed at "Guest" and no one else. Everyone else has been wonderful supportive and helpful.

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jbn3boys
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Re: I'm Around - Sorry to Worry Anyone

Post by jbn3boys » Wed May 25, 2011 7:08 am

I am SO happy to hear you had a good day yesterday, Maddie!!! That is excellent news!! I'd say keep up those two changes, and maybe it will help overall! I pray the increase in Mirapex is well tolerated, and that eventually you WILL start sleeping better!

Also anxiously awaiting those test results,
jbn

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to quote Madalot..."I'm an enigma"

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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Wed May 25, 2011 7:43 am

Ugh --

I did the same thing last night as the night before (except I doubled the dosage on the Mirapex) and today I feel horrible (like normal). Tired and don't feel like I can stay awake.

Dang. Having one good day really tells me what I'm missing out on.

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jbn3boys
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Re: I'm Around - Sorry to Worry Anyone

Post by jbn3boys » Wed May 25, 2011 7:54 am

I'm so sorry to hear that! I KNOW that frustration all too well!

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Sleep study (Aug 2010): AHI 16 (On mask AHI 0.2) <-- Now, if I could just attain that "0.2" again!
aPAP for 4 months, Switched to BiPap, 2nd sleep study Feb 2011 Possible PLMD
to quote Madalot..."I'm an enigma"

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snuginarug
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Re: I'm Around - Sorry to Worry Anyone

Post by snuginarug » Wed May 25, 2011 6:09 pm

Mad, as usual, I don't have something wise or helpful to say, but i am thinking of you every day.

((( hugs )))

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Re: I'm Around - Sorry to Worry Anyone

Post by yanfeng » Wed May 25, 2011 7:18 pm

You go early therapy, don't be afraid of difficulties.

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Re: I'm Around - Sorry to Worry Anyone

Post by robysue » Wed May 25, 2011 11:01 pm

Maddie,

I've been away from the forum for a few days (traveling) and missed the start of this thread.

So wishing I could find that elusive "good night sleep" critter under my bed and send him off special delivery to your house tonight. You need that critter far more than I do---even with the insomnia being thoroughly messed up with the travel.

Not much else I can say. I certainly don't have any ideas or words of wisdom. JohnBFisher's post was exceptional and I'd go back and re-read it if I were you when ever you're feeling bad physically and hence in a downer of a mood.

But I will comment on this:
Madalot wrote: Dang. Having one good day really tells me what I'm missing out on.
Take those good days (however rare they are) and treasure them until you do manage to find some compromise settings on the machine and in all the meds that help get your life closer to what you want it to be. And to not loose sight of them, mark them on the calendar in some way.

And wishing you the best as the Mirapex gets ramped up.

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Madalot
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Re: I'm Around - Sorry to Worry Anyone

Post by Madalot » Thu May 26, 2011 5:46 am

My thanks to all that have replied here and offered kindness and support.

I met with my RT yesterday for my monthly "clinical" visit, something that is very new to me with the new DME. He checks me over and checks the ventilator to make sure it's working properly. We discussed my situation in detail and in his opinion, the fact that the vent is kicking pressure up to 17-19, even on my side, is fine. He said that I'm obviously obstructing (as he put it) and the vent is doing its job by increasing the pressure.

I expressed to him my frustrations and how getting and using the breathing equipment was supposed to make my life better. He, like my doctor, was NOT thrilled with my comments about not using the ventilator. He was very clear when he said that my situation is serious and not to be taken lightly. But he also admitted that he couldn't solve all my problems. Some, yes, but not all of them.

The general consensus is that the ventilator settings ARE good and doing what they are supposed to do. The fact that my sleep is being disrupted so badly is a "casuality" of the situation and nothing really can be done about it.

So the question really boils down to this: Is the benefit I'm getting from using the ventilator worth the resulting sleep disruption and daytime fatigue?

Too bad the answer to this question isn't as simple as the question itself.

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Re: I'm Around - Sorry to Worry Anyone

Post by HoseCrusher » Thu May 26, 2011 7:53 am

You may be able to take a chapter from how very young children sleep to improve your situation.

It has been a while, but as I remember babies sleep for 3 - 4 hours during the night and then take a few 2 hour naps during the day.

The first few months of growth place tremendous strain on a babies body. If this sleep pattern works for them, perhaps it could help a little with the stress you are under.

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