I'm Around - Sorry to Worry Anyone

HoseCrusher wrote: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.

This is a valid consideration. Thank you.

I'm still taking the Mirapex and increased the dosage two days ago. I'm still doing fine on it, but I think the dosage is still too low to expect any improvement. I need to check in with my neurologist about final dosage and what point we decide it's helping or not. Once that has played out, I need to make some decisions:

Am I going to continue therapy? If I make the decision to stop, that's it.

If I decide to keep using the ventilator, we HAVE to make some adjustments with my sleeping times/patterns.

My husband and I talked and IF I opt to continue treatment, he thought that we might be able to put the ventilator and oxygen concentrator on a cart with wheels, mounting a power strip right on the cart. Doing this we could move all the equipment from room to room, allowing me to nap using it wherever I happen to be. It's not a bad idea and definitely worth thinking about.

I'm just not sure where I am with all of this right now.

After having never spent a day in hospital in my life, I was stricken with Influenza H1N1 summer 2009 and was on life support for 3 weeks in la-la land and then after one week of storage (rehab they suggested) was sent home due to shortage of beds. It has taken me almost two years trying to recover and I am just glad to be alive these days although I still struggle day to day. My biggest issue right now is Atrial Fibrillation which causes bone-crunching fatigue and shortness of breath.... we are trying to deal with it until it can get fixed which may take another year. And the government does not consider this a disabling affliction so we are eating through savings slowly. Take the sour grapes and make fruit salad with them.... you hardly know they are in there. I empathize with all of the symptoms.... I've got that T shirt, believe me. The one thing I am thankful for is having resolved my OSA issues as I just cannot even imagine continuing with OSA issues not addressed. I would be bed ridden.

Like I say; try to inject some humour, good cheer, distractions, ANYTHING into your life to try and better your days. I understand the daily nausea, twitches, buzzing, general feeling of LOUSY... like I say, been there and got the T shirt and these days it is the same only different (sic).

My avatar is from the first day I spent outside with my better half after coming home from hospital. It took me three months just to be able to roll over in bed if that gives you any idea of the sad shape I was in. Constant pain addressed by powerful drugs that caused dreadful withdrawal (they wanted me to go to a methadone clinic! But I just said I can do this and don't need methadone on top of everything else.... I went from Morphine to Tylenol on my own in steps and now rarely even take the Tylenol... it's easier to deal with the pain from time to time).

Sometimes one needs a second or third opinion and I heartily recommend these to your consideration as well. It took five specialists to determine my shortness of breath was Atrial Fibrillation and several potent tests (CT scans with radioactive dye contrast, etc.).

Like I said earlier, nothing but happy thoughts coming your way. Hang in there.

torontoCPAPguy wrote:Like I said earlier, nothing but happy thoughts coming your way. Hang in there.

Thanks, torontoCPAPguy. I remember your story and know you've been through the wringer for sure. I truly admire your perseverance and determination to get better.

I guess where I am right now is that using the ventilator every night is helping me breathe (and that's a good thing), but beyond that, there's nothing positive about the experience. I sleep better without it (or at least it seems like I do) and I'm less tired during the day. If I don't use it, though, I have so much trouble breathing.

I know that stopping therapy isn't a good decision, but it seems like my choices are limited. What I want is to use the equipment, but feel rested and able to function during the day. It doesn't seem to me that's too much to ask, but apparently, it is.

I try to keep my sense of humor and up until recently, was going a fairly good job. But as each day goes by and I feel worse and worse, it's hard to see the light at the end of the tunnel.

I'm going to let the Mirapex situation play out, give my neurologist a chance since he's a great guy and a fabulous doctor. But if we don't find solutions to make the situation better, I have to make a decision whether to continue with therapy or not.

Madalot wrote: I'm just not sure where I am with all of this right now.

I think about you, Kathy, and I do so often, wishing you better days. I think the statement quoted above is so honest. It must be a terrible dilemna to be in and I wonder if you feel yourself pulled first one way and then another. Somehow, I think it would be understandable if you did. I will continue to hope for better days for you!

Jeanette

newhosehead wrote:

Madalot wrote: I'm just not sure where I am with all of this right now.

I think about you, Kathy, and I do so often, wishing you better days. I think the statement quoted above is so honest. It must be a terrible dilemna to be in and I wonder if you feel yourself pulled first one way and then another. Somehow, I think it would be understandable if you did. I will continue to hope for better days for you!

Thanks, Jeanette. It means a lot to me. It would be easier if I just didn't feel better. If things were status quo, I could handle it better. I WANT to use the ventilator so I can breathe at night. This laying down and struggling to breathe is awful - very scary. That is so much better using the ventilator and it's a relief to have it. But the price I'm paying for that "luxury" seem too high.

I know a lot of people are frustrated with me and my situation. I understand that and I CAN say that if I were on the other side of this, I would probably feel the same way. However, something dawned on me and I can't remember if I've shared this piece of the puzzle.

A lot of people have commented that if I need to nap during the day, just do it and stop fighting it. That makes sense, but for one thing:

It makes no difference if I nap in my chair (without the ventilator) or get into bed and get hooked up with the vent and oxygen - when I wake up, I feel AWFUL. I feel worse, physically, than I did before I fell asleep and that horrible feeling lasts for HOURS. That's one of the reasons I don't look forward to taking a nap because I know I'm going to feel like dog doo doo when I wake up.

If taking a nap or two during the day refreshed me and made me feel better, I wouldn't be as ticked off about having to do it. But when I know that taking a nap is going to result in my feeling groggy, nauseous and just plain awful, why would I look forward to it?

My former RT had told me that this was very relevant and that napping (especially with the vent), but waking up feeling that horrible is a clue.

A clue to what?

Can you limit how long you nap for? Sometimes napping for 30 minutes results in waking more refreshed than napping for 1.5-2 hours.

SleepingUgly wrote:A clue to what?

Can you limit how long you nap for? Sometimes napping for 30 minutes results in waking more refreshed than napping for 1.5-2 hours.

A clue that "something" isn't right with my sleep in general.

It makes no difference. I've slept for as little as 10 minutes, 30 minutes or as long as 3 hours.

Maddie,

So sad that the naps make you feel worse for hours after you wake up. But there's simply no way to avoid the naps if I recall---you just get way too tired during the day to simply try skipping the naps altogether for a day or two to see if that might make you sleep better at night.

Do you feel equally bad (for HOURS) when you first wake up in morning too?

robysue wrote:So sad that the naps make you feel worse for hours after you wake up. But there's simply no way to avoid the naps if I recall---you just get way too tired during the day to simply try skipping the naps altogether for a day or two to see if that might make you sleep better at night.

I have skipped naps many days. There are days that I just don't want to take a nap so I try to get up and move around when that overwhelming fatigue hits me. This sometimes works, but sometimes only lasts as long as I'm moving and as soon as I sit down, I'm falling asleep again. With my neuromuscular problem, I can't keep moving. Sometimes, something is going on that prevents me from taking a nap. Usually on these days, I CRASH in the evening and doze off sometime between 7 - 8pm.

I fall asleep quickly at night (most nights anyway) no matter if I've napped or not. I have no trouble falling asleep. It's staying asleep that's the problem. Even when I wake up during the night, I fall back to sleep within minutes.

robysue wrote:Do you feel equally bad (for HOURS) when you first wake up in morning too?

No. I usually feel semi-okay for a few hours after I get up in the mornings.

Napping is like dancing...

While anyone can "shake it up" a little and call it dancing, the results are more spectacular with practice.

There are two basic "steps" to learn.

The short nap or power nap runs about 20 minutes. The longer nap runs around 90 minutes and lets you go through a complete sleep cycle.

I think it is much better to go into a nap visualizing what you want out of it. You see yourself quickly falling asleep, having your body restored, resetting the activity in your brain and finally waking up refreshed. If possible, just tell your mind to wake you up in 20 minutes and don't bother setting an alarm. This way your body and your brain can battle it out to see how long you need to nap.

Waking up feeling like crap generally indicates that you woke up in the middle of a deeper stage of sleep. Sometimes you can simply nudge yourself back to sleep and wake up a little later on feeling a little better, but other times you just have to get up and shake it off.

Ideally, it would be great to hook up to a EEG machine while you nap, but that is most likely impractical. Some information on sleep stages can be obtained by reviewing pulse oximeter data, but it is not as reliable as an EEG. Still, it may provide some useful information.

While anyone can simply fall asleep during the day, restorative napping takes practice.

The hardest part of all of this may actually be developing a crap index...

Since you feel like crap during the day because you haven't had a good nights sleep, you will have to assign a crap number to how you feel. When you wake up feeling like crap, you will have to determine if you feel crappier or less crappy than you would normally feel at that time of the day. You might even want to consider keeping a crap diary where you can keep track of your various crap scores. It would probably be best to review your crap diary when you didn't feel like crap, or you could give it to your doctor for review. Some doctors are good at sorting through crap.

It seems like the key is to figure out what is waking you up when your body needs more sleep. If you can find that trigger, perhaps something can be done to tone it down or eliminate it.

In reflection, this may be a crappy suggestion, but it is the best I can come up with at the moment. Feel free to properly dispose of it and be sure to wash your hands afterward...

HoseCrusher wrote:It seems like the key is to figure out what is waking you up when your body needs more sleep. If you can find that trigger, perhaps something can be done to tone it down or eliminate it.

In reflection, this may be a crappy suggestion, but it is the best I can come up with at the moment. Feel free to properly dispose of it and be sure to wash your hands afterward...

I had to chuckle are all your "crap" references. I'm still smiling over those!

Here's the thing -- no matter how long I nap, whether it's an hour, two or three, I wake up in a similar pattern that I do at night. Yesterday's nap was outside on the deck, for 1.5 hours, but I woke up at least 3 times during that 1.5 hours.

I think you're right, though. We need to figure out WHY I'm waking up so much (and that's what that infamous sleep study was SUPPOSED to be looking for). I'm not convinced that leg movements are THE problem, but feel I need to cooperate with my doctors and continue taking the Mirapex. Right now, I don't see any improvement, but have a call into my doctor to find out the target dosage and how long at the target dosage to say "yes or no" if it's helping.

Despite what the sleep study indicated, I am waking up, on my SIDE, with the IPAP being between 17-19 every time. I mentioned it to the RT, suggested that perhaps the increased pressure is waking me up, but he kind of "pooh pooh'd" that idea, saying that pressure isn't that high. And I guess if you look at the ONE night in the sleep lab, the pressure stayed down around 14-15 and I still woke up.

The idea of a CRAP diary isn't a bad one. Keep track of everything and see if there is some pattern that I'm not seeing.

I gotta say, I don't have a neuromuscular disease, but I spent many, MANY years living as you describe--waking up many times a night, needing a nap daily (even when I was on stimulants), waking up feeling just as bad if not worse after the nap, etc. (I still have many of these issues, and if I didn't take wake-promoting agents, I would have to nap). I am not sure that this is specific to your condition, although I understand that you feel the ventilator makes this phenomena worse.

How much longer to your Mirapex trial until you know whether it's helping or not?

SleepingUgly wrote:I gotta say, I don't have a neuromuscular disease, but I spent many, MANY years living as you describe--waking up many times a night, needing a nap daily (even when I was on stimulants), waking up feeling just as bad if not worse after the nap, etc. (I still have many of these issues, and if I didn't take wake-promoting agents, I would have to nap). I am not sure that this is specific to your condition, although I understand that you feel the ventilator makes this phenomena worse.

How much longer to your Mirapex trial until you know whether it's helping or not?

I wasn't feeling great BEFORE cpap/bipap/ventilator, but I was NOT having the awakenings I'm having, nor the level of daytime fatigue. It could be a coincidence and not related to it, but I don't know for certain.

I respect that wake-promoting agents have worked wonders for you. I'm still hoping to find the cause before taking that step. As I've said, I take a boatload of medications NOW and unless it's absolutely necessary, don't really want to add another drug to my situation. I've asked about it and my doctors agree that we don't want think about that unless we have no other choice.

We increased my Mirapex dosage to 0.5 mg on Tuesday. My doctor's Fellow called me a bit ago and said to give it two weeks, then call them. He indicated if nothing is changing on this dosage, they will increase it again, but didn't tell me how much.

Edited to add: My neuromuscular condition makes it difficult, sometimes, to prescribe medications. Many medications are harmful for patients like me. That's one of the reasons my pulmo doctor wouldn't give me the Requip or Mirapex and insisted that my neurologist okay and oversee the treatment. I also have gastroparesis and the treatment of choice (again a medication) is contraindicated for patients with a neuromuscular disease, leaving me with few options to treat the problem. I've even found that *I* have to remind doctors, at times, that they can't give me a specific medication (like muscle relaxants) because of my disease.

So please understand if I'm not jumping immediately on recommendations for medications.

Madalot wrote: Here's the thing -- no matter how long I nap, whether it's an hour, two or three, I wake up in a similar pattern that I do at night. Yesterday's nap was outside on the deck, for 1.5 hours, but I woke up at least 3 times during that 1.5 hours.

Yesterday's nap was outside, so am I correct in assuming you didn't use the vent for the nap? So you have the SAME pattern of wakes when you are NOT using the vent during the naps that you have when you ARE using the vent at night? That just might be significant.

I also think HoseCrusher's crap diary idea may well be useful in helping you figure out what's going on.

Despite what the sleep study indicated, I am waking up, on my SIDE, with the IPAP being between 17-19 every time. I mentioned it to the RT, suggested that perhaps the increased pressure is waking me up, but he kind of "pooh pooh'd" that idea, saying that pressure isn't that high. And I guess if you look at the ONE night in the sleep lab, the pressure stayed down around 14-15 and I still woke up.

And you just got done saying that you woke up at least three times in a 1.5 hour nap that was taken outside. Since the vent is bulky and hard to move, I assume you weren't using the vent for that nap. So high or increasing pressure could not have been responsible for waking you up during the nap. And that raises the questions: What's waking you up when you DON'T use the vent? And could the same thing be waking you up when you DO use the vent at night?

Crazy idea: Do you have any idea what kind of events the vent is responding to when it starts increasing the pressure up to the level where you wake up? Maybe the events themselves are what is waking you up?