10 days on VPAP Adapt (ASV) and I feel awful

[absurdlyTired]

Is it normal to feel at least as tired as before my device? Actually, tired is really not the correct term. I am so fatigued that it is difficult to breathe during the day and I feel "dead".
I was diagnosed with mixed (mostly central) sleep apnea over the past couple of months (3 sleep studies), and have been a shell of a person since November. Today, I actually saw the sleep specialist (the one who read my hospital sleep studies). He didn't seem that concerned and had no real answer to...

1. Why I am sooo tired. Sure, I have had some aerophagia, which might be contributing to me being up a bit during the night. But he's lowering the pressure tonight. This might help that. But I have been technically sleeping more since I have the device AND supposedly my AHI is under 5. So, it's apparently taking care of my apnea.

2. He suggested (and gave me an rx for) Ambien. I'm not comfortable with this, because I generally don't like to take pills. Is this normal for people with apnea (especially central sleep apnea)?

3. I mentioned some anxiety I seem to be having during the day due to feeling quite helpless. He suggested (and prescribed Zoloft).

Does anyone know if there is some serious health problem I could have that could be causing my central sleep apnea? It doesn't feel like the fatigue is a result of the apnea - it feels like the apnea is a result of the fatigue.

I'm in rough shape.

[49er]

Hi Absurdly Tired,

It sounds like you need to see your internist possibly to check out other problems.

It also sounds like you need a new sleep doctor since it seems he wants to throw drugs at the problem.

Uh, feeling anxiety because of your situation is totally understandable and shouldn't be medicated.

Regarding ambien, why were you prescribed that if you are not having trouble sleeping?

In doing a google search, I did find this article and am wondering if perhaps your doctor prescribed it based on the information in it:

http://www.medpagetoday.com/PrimaryCare ... rders/3594

""The sedative Ambien (zolpidem) appears to reduce the symptoms of central sleep apnea, according to a small open-label study reported here.""

Still, I would be quite leery of taking either med without extensive questioning of the doctor to make sure the benefits outweigh potential side effects. And he doesn't seem like the type of doctor who will listen to your questions. Yup, find someone else.

Hang in there.

49er

[johnthomasmacdonald]

I've been on ASV about the same amount of time as you - i can't say i feel any worse than i did on any of the other machines i've used but i can't say i feel any better either - ahi seems a bit more regular in my case ( my ahi numbers are all over the place) but not significantly so

from what i've heard here from others - it takes month(s) to adjust to the asv and start feeling significantly better from it - let's hope so

[absurdlyTired]

Thanks for the replies.

I am not filling the Ambien rx. I'm going to see how the reduce pressure goes towards helping with the aerophagia. And if it does, then maybe it will allow me to sleep more soundly and for longer. Currently, I am aware of gulping occasionally throughout the night and wake up around 2 hours (usually) after falling asleep. Then, after some gas release, I'll put the mask back on and fall asleep for another 3 hours. So, generally, I have been averaging about 5 hours of sleep (note: it's not all "sound" sleep, but not bad). I feel sooo awful.

I fully admit that my anxiety and depression are possibly making an appearance here. I'm 2.5 months into this and feel like I'm getting nowhere. I've accumulated credit card debt from medical bills, and my wife is losing patience. She's not sure how much more she can take of me being a pathetic, useless ex-person. My poor kids have a dad that is pathetic.

Note: I have had a brain MRI, seen an ENT specialist, had a full physical with blood tests (including thyroid), had 3 sleep studies, and now have been on a device for 10 days. This all started in November. Before I received the device, I looked forward to the device as my savior. Then, a day or two in I looked at it as I just have to get used to it. Now, 10 days in and feeling worse than ever, I'm not sure what else to do. I've lost everything in 2.5 months.

[jencat824]

Hi Absurdly Tired,

It sounds like you need to see your internist possibly to check out other problems.

It also sounds like you need a new sleep doctor since it seems he wants to throw drugs at the problem.

Uh, feeling anxiety because of your situation is totally understandable and shouldn't be medicated.

Regarding ambien, why were you prescribed that if you are not having trouble sleeping?

In doing a google search, I did find this article and am wondering if perhaps your doctor prescribed it based on the information in it:

http://www.medpagetoday.com/PrimaryCare ... rders/3594

""The sedative Ambien (zolpidem) appears to reduce the symptoms of central sleep apnea, according to a small open-label study reported here.""

Still, I would be quite leery of taking either med without extensive questioning of the doctor to make sure the benefits outweigh potential side effects. And he doesn't seem like the type of doctor who will listen to your questions. Yup, find someone else.

Hang in there.

49er

I would seriously ask questions before taking either drug. Zoloft and Ambien are addictive, why do I know this, I have multiple medical problems and take over 34 prescription medications. I have been offered drugs like Zoloft & Ambien and have refused them. I am on Cymbalta (evil stuff) an antidepressant because of a complex system of errors, my pain dr insists on it and won't give me my other meds unless I agree to take this awful stuff. Its an antidepressant/anti anxiety med. As for Ambien, if you can' sleep without it, no need to get hooked. I was on several meds befoe I realized that many drs just throw pills at the problem. Now, I'm stuck on all of these due to a complex seizure disorder, MS, lymphoma, fibromyalgia to name a few of my diagnosis. If I could go back to the start of these meds, I would refuse everything and I think I would be in a different state of health today. That is why I advise anyone I know (or see pop up on this board or others) seriously consider the med - do you have to have it, what will it do both good or bad & can you make it thru whatever the problem (in this case the sleeping issue and the very normal anxiety issue) without the pills. If you truly need the RX, don't feel bad about that, take it, but try to look at it as short term if possible. I write this to you from my heart, in the hopes of sparing you troubles like mine down the road.
Jen

[49er]

Hi Absurdly Tired,

You might want to consider doing a free online CBT program for your anxiety and depression. Here is a link to a google search I did.

It might help you reframe your thoughts about being a "pathetic" person. You're not as you're simply going through a tough time.

http://tinyurl.com/bbn8n6p

How is your diet? Is it as good as it can be?

I know it sounds like I am grasping at straws. Based on your responses, you have probably covered this area also.

Seriously, I would consider finding another sleep doctor if you're in a position to do so and take Jen's advice seriously about the meds.

49er

[49er]

I would seriously ask questions before taking either drug. Zoloft and Ambien are addictive, why do I know this, I have multiple medical problems and take over 34 prescription medications. I have been offered drugs like Zoloft & Ambien and have refused them. I am on Cymbalta (evil stuff) an antidepressant because of a complex system of errors, my pain dr insists on it and won't give me my other meds unless I agree to take this awful stuff. Its an antidepressant/anti anxiety med. As for Ambien, if you can' sleep without it, no need to get hooked. I was on several meds befoe I realized that many drs just throw pills at the problem. Now, I'm stuck on all of these due to a complex seizure disorder, MS, lymphoma, fibromyalgia to name a few of my diagnosis. If I could go back to the start of these meds, I would refuse everything and I think I would be in a different state of health today. That is why I advise anyone I know (or see pop up on this board or others) seriously consider the med - do you have to have it, what will it do both good or bad & can you make it thru whatever the problem (in this case the sleeping issue and the very normal anxiety issue) without the pills. If you truly need the RX, don't feel bad about that, take it, but try to look at it as short term if possible. I write this to you from my heart, in the hopes of sparing you troubles like mine down the road.
Jen[/quote]

Oh my gosh, Jen, I totally wish I could go back to the start of taking my psych meds years ago and refuse everything. My life would be so different.

I am so sorry you have wound up on meds thanks to doctors thinking that is the solution to everything.

Wow, being in a position of having to take Cymbalta? Unbelievable.

Sorry, Absurdly Tired for temporarily hijacking your thread but what Jen said about meds really struck a chord that I had to respond to.

49er

[qmx]

Hi Absurdly tired, I would agree with the others. I am concerned about the depth of your problems. Please see your internist , if he is reputable ... otherwise, find one who is ... and see if there might be an alternate Sleep Doctor he could refer you to. More drugs might just muddy the waters. All the Best ... and ... keep in touch with this Forum. DEAN

[absurdlyTired]

For those that recommend an internist - what might s/he be looking for?

Basically, I have fought for 2.5 months to finally see a sleep specialist. The other sleep centers and sleep specialists here all are associated with practices, and won't talk to you until you have been officially referred (by your primary care). My primary is useless, and I really need to change, but at this point, I have exhausted all of my good will at work with appointments. There is also an extreme shortage of primary care providers in my state. And to find one with the stated intention of switching to a different hospital/sleep center/sleep specialist seems nearly impossible to do within a 6-month time frame.

That said, I have been managing my own care essentially, and just need to stay informed enough that I can demand who I want to see (some type of specialist) and for what reason. So, at this point, I need to figure out why I feel like I'm dying and what specialist might diagnose me. My sleep specialist also was kind enough to mention that the expensive (and torturous) brain MRI I went through at my doc's request was a waste of time and money.

My diet is not bad - and I have been eating even better over the past few months to make sure I at least control that. I am 6-1, 185lb, 40 years old and feel terminal at this point. The past 2 nights have been the most sleep so far on this PAP device (last night 7.3 hours registered on device of use. Mostly while "sleeping", with an AHI of 2.. I should feel like a million bucks. But I feel worse than I ever have.

Sorry to whine. Thanks for all of the suggestions. I have been on Prozac in the past, and have Xanax that I use while flying, but the sleep specialist told me I shouldn't even take a single half-pill Xanax during the day if I am experiencing anxiety due to my symptoms. Prior to November, I hadn't taken a Xanax in 3 years - and only when I flew for work. I hadn't been on Prozac in years, and even then it was less than the recommended starting dose. My sleep specialist also said that I shouldn't even have one glass of wine during the day.

Anyway, my only hope right now is to just keep doing this and hope that I wake up refreshed and have energy some day. And I just hope my wife and kids are still with me so I can enjoy it.

[qmx]

I really feel for you. The severity of your fatigue and the feeling that you are "terminal" practically demands the need for a skilled diagnostician. I am not at all sure that you can begin to get ahead of these problems without one. Repeated visits to a useless PCP appear to be getting you nowhere. I wish we could be of more help on this Forum. Hang in there friend. DEAN

[patrissimo]

That sounds really hard. I've had a lot of the same feelings and issues, though it was over the course of years. I will say - if you can still drag yourself through work, that's a good sign.

As others have said, your sleep specialist sounds sketchy, offering pills instead of answers. Trying Ambien is reasonable to get used to the machine, but only as one part of a solution. One thing I didn't see is whether there is any explanation yet for why you have central sleep apnea? The normal case for ASV seems to be CSA caused by high CPAP pressure needed to overcome OSA. That would lead to different advice than if you have CSA for some other reason.

10 days is not very long for a therapy, it can take weeks to months for people to adapt to CPAP, and I've heard several people talk about months to get used to ASV. I know it sucks to not have a way to get better faster, I'm struggling with that myself.

What happens when you try to go back to sleep after 5 hours? That could be a great time to take a half-Ambien (5mg) to get a few more hours.

One thing that you didn't talk about is whether those 10 days have been uniformly awful, or whether there has been any variation. Variation is something to be worked with - if you can identify why the better days were better, perhaps you can get more of them. If you have even one day that is better than your recent months pre-ASV, that is a sign of hope. For me, I've been on APAP for a month, and had 2 nights that were noticeably better than I'd had in many months, and 28 nights that felt like, say, 75 percentile pre-APAP (bottom of the top quarter of nights). It's those 2 nights that give me hope - and they happened in week 3 and week 4.

[49er]

Absurdly Tired,

Do I assume correctly during your physical that your vitamin D levels were checked? Was diabetes/hypoglycemia also investigated?

Regarding diet, many people have improved greatly on one that is paleo like. Of course, your mileage will vary.

Please hang in there and don't give up.

49er

[Mary Z]

I sure am sorry you're having such a bad time, but I'm glad you're writing and searching for answers despite your fatigue. I am on ASV and figured it would take about six months toa year to really gain the most benefits. I used to think "use the machine 100% of sleep time" and soon all will be well. Now I know that without good, deep, restorative sleep you will not feel better.
Until we get our sleep problems solved we can't heal our bodies (healing takes place during the deep stages of sleep while we are essentially paralyzed).
I agree we shouldn't throw pills at the problem, but you are bound to be somewhat depressed over this situation. I take zoloft and my psychiatrist says to take it in the morning for a small boost. The ambien- if you investigate and find it may help central sleep apnea, give it a try if you like. Pills have saved my life so I'm pro-pharmceutical, but I agree don't throw pills at every problem.
I hope you can get you're sleep straightened out. Have you tried raising the head of the bed for the gas problems?

Good luck, and do give the ASV a chance to learn how you breathe and respond appropriately.
Mary

[JeffH]

Thanks for the replies.

I am not filling the Ambien rx. I'm going to see how the reduce pressure goes towards helping with the aerophagia. And if it does, then maybe it will allow me to sleep more soundly and for longer. Currently, I am aware of gulping occasionally throughout the night and wake up around 2 hours (usually) after falling asleep. Then, after some gas release, I'll put the mask back on and fall asleep for another 3 hours. So, generally, I have been averaging about 5 hours of sleep (note: it's not all "sound" sleep, but not bad). I feel sooo awful.

I fully admit that my anxiety and depression are possibly making an appearance here. I'm 2.5 months into this and feel like I'm getting nowhere. I've accumulated credit card debt from medical bills, and my wife is losing patience. She's not sure how much more she can take of me being a pathetic, useless ex-person. My poor kids have a dad that is pathetic.

Note: I have had a brain MRI, seen an ENT specialist, had a full physical with blood tests (including thyroid), had 3 sleep studies, and now have been on a device for 10 days. This all started in November. Before I received the device, I looked forward to the device as my savior. Then, a day or two in I looked at it as I just have to get used to it. Now, 10 days in and feeling worse than ever, I'm not sure what else to do. I've lost everything in 2.5 months.

Until I started using a chin strap with my FFM I had problems with my ASV. Using a chin strap solved them.

JeffH

[n0hardmask]

Until I started using a chin strap with my FFM I had problems with my ASV. Using a chin strap solved them.

JeffH

What problem was solved by using the chin strap, Jeff? I've heard others talk about using the chinstrap to help with leaks... why in your case do you think it helped? I, too, have been on ASV a month and my two challenges seem to be various leak challenges and the original problem- extremely fragmented sleep. thanks,