Advice needed for post-op CA's

[tuzacat]

I am hoping for some thoughts and advice about an increase in my AHI since sinus and deviated septum surgery in Oct.. Prior to surgery my AHI was anywhere between .2 - 1.5 mostly hovering around 1 usually a little below. Now it is mostly around 3 and once it even hit 5. Prior to the surgery I was using the Hybrid mask because my sinuses would just clog up no matter what humidity setting I used - so I needed to mouth breathe. For a while after surgery I continued using it for the same reasons. However, I have since found I can tolerate the Wisp, the Nano, and sometimes Swift FX - I use a chin strap, home concocted, and I tape. Most of my events prior to surgery were CA's - maybe once or twice a week I'd get an OA or two - the occasional sprinkling of other events. Post op there were a lot of ugly looking things on my chart - lot's of RERA's and a big increase in CA's and snores - not much increase in OA's. I thought much of this stuff might be due to all the various meds I was on so I didn't worry about it and I figured as I got to breathing better and weaned off the meds things would start to right themselves. It didn't really matter which mask I used.

About two months ago I started taking Plaquenil and within a week I noticed I was having more problems getting to sleep and staying asleep.

Here's what's going on now: I am having mostly CA's; when I look at my data they do not appear to be related to leaks. Often when I mask up at night shortly afterwards I have instances when I don't seem to be intaking air - it's like I stop breathing. While I have always had that issue a little (I think it started when I started BiPap but I can't really swear to it) it has become much worse. When I look at my data it looks as if I am having CA's while I am still awake! Is that possible?

I have been wondering if two different things are going on here. Since my pressure was calculated for a nose that wasn't breathing too well before surgery I am wondering if my pressure is now too high. Although sleep issues do not seem to be a side effect of Plaquenil officially there is quite a bit of anecdotal evidence to support that this could be a contributing factor to the insomnia.

Here's what I have been thinking about doing and wondered what your thoughts were:
1. Since the CA's were pre-plaquenil I have been thinking about taking my pressure down from 13 intake to 12 and leaving the exhale where it is at 10. I'm sort of wondering if I should tinker with this myself or go back to the neurologist who is my sleep dr.
2. Some people don't take their Plaquenil at dinner time because of the sleep issues so when I go to the Rheumy on Tuesday I am going to ask him if I can take take the dinner dose at lunchtime.

Thank you for taking time to read all of this and for any thoughts you care to share!

[BlueSky72]

I've had nasal surgery and I think it's wise to get a sleep study done once the nose has healed so your sleep dr can get a clear picture of where things are currently at.

I have no experience with BiPap so I can't comment on your problem, but I do know that until I got my Vpap ASV, my AHIs could not get below 7.5, now they are as low as 0.7. I was told that my centrals are mainly clustered at the start and end of the night, as the breathing centre adjusts from waking to sleeping and vice versa.

I would also recommend seeing your sleep dr about all this because your case is already complex and in this case its better to see him than make changes yourself, especially since you have recently had surgery.

[avi123]

Your post is confusing. Impossible to tell what machine you're using and for what sleep disorder condition. To go down with pressure from 13 to 12 cm is meaningless. Too small a change.

Why are you taking this drug:

Source:

http://www.webmd.com/drugs/drug-6986-Pl ... genumber=4

Plaquenil oral is used to treat the following:

Malaria caused by the Protozoa Plasmodium Falciparum, Prevention of Falciparum Malaria, Malaria caused by the Protozoa Plasmodium Vivax, Preventive Treatment of Vivax Malaria, Malaria caused by the Protozoa Plasmodium Malariae, Preventive Treatment of Quartan Malaria, Malaria caused by the Protozoa Plasmodium Ovale, Preventive Treatment of Ovale Malaria, Malaria Prevention, Disease that Causes Disc-Shaped Patches On the Upper Body, Systemic Lupus Erythematosus, Rheumatoid Arthritis

Plaquenil oral may also be used to treat:

Heart Infectiion due to Microorganism Coxiella Burnetii, Increased Calcium in the Blood from Sarcoidosis, Porphyria Cutanea Tarda, Inflammation of Blood Vessels in the Skin, Skin Allergy to Sunlight, Joint Inflammatory Disease in Children and Young Adults.

[tuzacat]

Thank you, Blue Sky, I was planning to do that in a couple of months anyway, but last night I had such bad insomnia I started to think how folks on here are always playing with their pressures maybe it would help if I tweaked it a little in the mean time. I was planning on waiting to see the doctor because I still have some swelling so I wanted to be more completely healed. I will probably just leave it and wait especially since Avi is saying bumping it down just one number won't really help. I started cpap at 10 but later had a new study and went up to 13 and was switched to Bipap because of the pressure.

Avi, I have no idea why my machine is not showing up in my post. It used to. It's still there in the equipment section. I resubmitted it and it's still not showing up. I use a Phillips Respironics BiPap Auto Bi-Flex System One. When I was diagnosed they did not tell me anymore than I had sleep apnea and that I was having 70 episodes an hour...but I actually only managed to sleep for an hour that night. Nothing was mentioned about obstructive or central and I didn't know enough about it to ask. I'm assuming obstructive since my first machine was a cpap. When I had a new study done they bumped me up to 13 and switched me to BiPap so I would be more comfortable at that pressure. I take Plaquenil for Rheumatoid Arthritis. Apparently, it is one of the first things they try for people with low to moderate RA. Sorry my post was confusing but thanks for your response anyway. I don't think I'll adjust the pressure since you are saying an adjustment that minute won't help.

[Pugsy]

I suspect that you have the PR System One BiPap Auto machine...model 750???
If so I think it doesn't show up because links to discontinued machines seem to be broken and there's a model 760 now.
You might just add it to your comments section similar to how I have my model 660 backup machine.

I don't know what to make of your increased centrals and I doubt they are related to pressure and thus I doubt a change in pressure would make much of a difference. It wouldn't be impossible though.
It wouldn't hurt to reduce the pressure to test.

I would also keep a close eye sleep quality and frequent awakenings during the night...maybe those centrals aren't worth worrying about...if they are awake event flags we don't count them anyway.
If they are sleep onset...we don't worry about them unless they cause problems and 2 or 3 per hour are highly unlikely to be causing much of a problem.

[tuzacat]

Thanks, Pugsy, I am going to ask the rheumatologist if he has had any experiences with the plaquenil similar to mine. The not breathing thing when I first mask up is disconcerting to say the least and kind of jolts me more awake. I am waking up more often than I was and having a lot more difficulty falling asleep so maybe just moving when I take it will help.

Many of them are clustered at the beginning and end of sleep but sometimes there is a string of them along with a PB in the middle of the night; when I check the leak line nothing much is happening. I know you have said that it sometimes coincides with the sleep cycle 90 minutes after you fall asleep but it's hard for me to figure out when that is now when the getting there is so rough. I suspect I actually do fall asleep more than I think I do but not deeply and get jolted out of it by these events. Lately, it's taken way more than an hour to really get into dreamland.

Thanks for your thoughts, Pugsy, I'll keep monitoring it.

[BlueSky72]

Maybe ask the Rheumy (or your primary care dr) if you can take the Plaquenil in the morning instead of the evening, if it's causing insomnia and awakenings. I have fallen into that trap a few times with various meds, from not asking the prescribing dr at the time... they are supposed to always get it right from the start - dose time is important, esp. with sleep apnea.

I also suggest seeing a sleep dr instead of a neurologist for your sleep apnea, that way you have more chance of getting the basic info you need about your condition. It's important that you receive a copy of your sleep study report and that you understand what it means. 70 episodes an hour is a lot, very severe sleep apnea, and you need to learn about how your other medical conditions impact your sleep and vice versa. Do you mind if I ask, are you overweight, and what is your age? Thanks.

[tuzacat]

Hi, Blue Sky, my Sleep Doctor is a neuralogist. He also has apnea so he is very familiar with all we are dealing with. It's a very user friendly group of people. I was first diagnosed about 4 years ago and that's when he told me I had had 70 episodes during the 1 hour I actually slept that night but he didn't tell me what kind and I didn't know enough to ask. My pressure was bumped up about a year and a half ago because I was waking up so much at night it was like it was before I went on Cpap.

The rheumatologist told me to take the Plaquenil in the morning. I did that yesterday. I still had trouble sleeping last night but I'll give it a while.

Weight ... sigh...I'm 59. About a year before I went on CPAP I was a size 6, I have been steadily gaining weight for the past 5 years. Now I am a size 12. I thought I would be able to lose it when I went onto Cpap but instead I just gained more. It came on very fast and I have not been able to lose it. This summer I did this whole sugar free gluten free thing , really watched what I was eating and didn't lose an ounce. As I am getting slowly out of pain I am starting to be able to exercise again but not yet the way I was before. (I did Bikram Yoga for a while before I got too bad and didn't lose much with that either). It is disheartening but I am hopeful that this will eventually get sorted out. I do think it is partially related to my sleep issues because invariably if I sleep really soundly for 9 or 10 hours (almost never) the next morning I have lost weight. Very strange...

I do plan to go back to the Sleep Dr. but I want to wait for maybe a month or two (unless my AHI gets really bad) because I still havin swelling in my nose and I want to be more healed.

Thanks so much for your input!

[BlueSky72]

Hi, Blue Sky, my Sleep Doctor is a neuralogist. He also has apnea so he is very familiar with all we are dealing with. It's a very user friendly group of people. I was first diagnosed about 4 years ago and that's when he told me I had had 70 episodes during the 1 hour I actually slept that night but he didn't tell me what kind and I didn't know enough to ask. My pressure was bumped up about a year and a half ago because I was waking up so much at night it was like it was before I went on Cpap.

The rheumatologist told me to take the Plaquenil in the morning. I did that yesterday. I still had trouble sleeping last night but I'll give it a while.

Weight ... sigh...I'm 59. About a year before I went on CPAP I was a size 6, I have been steadily gaining weight for the past 5 years. Now I am a size 12. I thought I would be able to lose it when I went onto Cpap but instead I just gained more. It came on very fast and I have not been able to lose it. This summer I did this whole sugar free gluten free thing , really watched what I was eating and didn't lose an ounce. As I am getting slowly out of pain I am starting to be able to exercise again but not yet the way I was before. (I did Bikram Yoga for a while before I got too bad and didn't lose much with that either). It is disheartening but I am hopeful that this will eventually get sorted out. I do think it is partially related to my sleep issues because invariably if I sleep really soundly for 9 or 10 hours (almost never) the next morning I have lost weight. Very strange...

I do plan to go back to the Sleep Dr. but I want to wait for maybe a month or two (unless my AHI gets really bad) because I still havin swelling in my nose and I want to be more healed.

Thanks so much for your input!

Your case is quite complex - it is always hard when there are multiple doctors as their understanding of other areas of medicine is limited. Do you have a good relationship with a primary care doctor - they are meant to coordinate things and view you holistically.

Just because your neurologist has sleep apnea himself doesnt mean he is necessarily better placed to help with the clinical management of sleep apnea. Sure it gives him empathy but IMO you need a fully accredited and experienced sleep medicine physician to review your case, do some more sleep studies and give you a second opinion. It appears you have other sleep disorders besides sleep apnea, because CPAP and BIPAP have not enabled you to sleep through the night, at all. If you only had sleep apnea you would be sleeping about 8 hours with no awakenings.

It is not normal to have swelling in your nose 4 months after surgery. Did you have a follow up appointment with your surgeon say 6 weeks after surgery, and what did he say? IMO he/she should still be monitoring you until your nose is improved. If it doesn't improve then maybe the surgery was not successful and you need to go back to square one with the surgeon or with a different surgeon.

Are you using a nasal or full face mask? IMO a full face mask might help get around the nose congestion issue while you wait to get that resolved. On the other hand, FF masks can be harder to manage leaks with.

I know it must be distressing to have gained weight but it is nothing to be embarrassed about, we are here to help and many of us have struggled with our weight and understand what its like. I have been obese all my life and topped the scales at 140kg, I'm 5ft8in tall. Now weigh 100kg. 42 years old.

IMO your weight gain may be due to a medical condition or medication and that can't be ruled out at the moment. I would need a little more info before I could comment but it would help if you gave your weight before the period of gaining, and what it is now, plus your height. When did your RA start and/or get worse? Were you quite active before that? Did you have a hard time during menopause? Do you have any other medical conditions besides RA and sleep apnea?

Sleep apnea or anything that causes poor quality sleep, such as frequent awakenings/sleeping for less than 8 hours, will always cause hunger the next day. Most people who are overweight when they start xPAP get their therapy sorted out in a few weeks and then start sleeping pretty much through the night and the weight starts coming off. Your case is different because your sleep quality and quantity are poor, and that is probably why you have gained weight. Seeing a good sleep dr will give you the best chance of turning this around.

In the meantime if you could start aquajogging or swimming that would probably be a big help and maybe stop the gaining. Its about the only low impact exercise that people with arthritis can do, at least initially.

What is your AHI currently? How many hours a night are you sleeping?

[tuzacat]

Yes, Blue Sky, I do think there is more going on than has been diagnosed at present but I am not sure it is actually a sleep issue - but it may be. I think I'm in this "what came first the chicken or the egg? " situation at present and I'm trying to wait and see what is going to work before I go for another spate of tests. From October on I had blood work, x-rays, tests, up my wazoo and I need a break. I have a very good primary care Dr., thank goodness, - extremely pro-active and I think a good diagnostician. Her PA was the daughter of a friend who considers her a brilliant diagnostician. An example -she sent me for thyroid tests 5 or so years ago when I went in for fatigue - on the way out of the room I mentioned to her if the tests came back negative maybe I had sleep apnea because I woke up all the time and I snored. She set me up with the sleep people when my results came back negative immediately - no let's get back together and pad the bill with another visit kind of thing - just go here and get it checked out. Recently, I have been for blood work 2 or 3 times, had bone x-rays, chest x-rays, heart ultra-sound...

I was surprised at what you said about my sleep doctor because I thought being a neurologist he would be an expert in sleep disorders especially since he runs the clinic at the hospital. I will look him up and see what his actual qualifications for sleep are. You definitely made me think a bit differently about this because even when my therapy is is good I almost never feel rested. I rarely sleep all the way through the night. Last night my AHI was 2.4; CA - 1.8; OA -.1; H- .5; VS - .1; RE -.6. The Leak line was not completely smooth but had very little fluctuation and read 29.3. (This is Encore Basic.) This was the 3rd day of taking all the plaquenil in the morning and there is definitely an improvement. I'm using a Nano right now. I prefer the Swift fx but plain nasal pillows have caused too much congestion the past couple of years. I tried it again recently and found I still had the same issue on the side that had the septum correction. I am hoping that will go away eventually. In order to get to sleep I take a little hops tea mixed with tart cherry juice. I also take 5 mgs. of Zyrtec and an Accolate sometime in the evening. Meloxicam in the morning and at dinner. Two sprays of Nasolide in the early evening. According to the data on the card I slept for 10 hours last night - however, I did not fall asleep right away, I got up once after 3 hours, and I woke up intermittently sometime before I got up at 8. I did dream last night. I am really tired today. The Sleep Dr. did write me script for Zaleplon but I don't really like to take it especially since I'm taking all this other stuff. Maybe I should. This is all incredibly frustrating to me because I really dislike taking meds.

The nose thing - I have had several follow ups with my ENT and he says I am healing normally. If I had only had one surgery I would probably be concerned but he actually did 3 different procedures and even where I am at present I can breathe much better than I did before them. He reinforced the cartilage in my nose in 5 different places and the cartilage had to come from other places in my nose. He also widened two areas and corrected a deviated septum on one side. One of my friends who had major corrective nose surgeries said it took hers almost a year to really heal. Even though it's been 3 months until very recently I was still seeing the dissolving stitches.

I am 5'4" and weigh 179 lbs. Before I went on CPap I was in the 140's. After I started I gained weight in earnest. I have dry eye syndrome, asthma, allergic to dust and dustmites, osteoarthritis, heel spurs, plantars faciitis, tendonitis in my feet, and this recent diagnosis of RA. The RA factor is quite low though but I have had a great deal of fatigue and joint pain. There have been days when I can barely walk although they are becoming fewer. I exercise daily - mostly Somatic exercises, Egoscue, I also use a Chi machine which seems to help and have recently started on a stationary bike. I have had the feet issues for many years and initially went to a podiatrist and had physical therapy but neither helped much so I just lived with it. A couple of years ago I was doing Bikram Yoga a couple of times a week and although everything else felt good it seemed to aggravate my feet. Another round of podiatry and physical therapy was no help. I then tried accupuncture and Chinese herbs. About 6 months into treatment I started to get pain in my knees - about a year and a half ago - it got so bad I couldn't sleep on my side without a pillow keeping my knees apart.At that point I was diagnosed with osteo - but now it's osteo and RA. I keep thinking if I slept better I'd have less pain but when you look at my numbers they really aren't that bad compared to what other people have.

Blue Sky, I really appreciate your thoughtful replies. I am going to keep stepping up the exercise and give it a little more time before I make another appointment with the sleep doctor ( and in the mean time look up his sleep credentials).

[BlueSky72]

Thanks for all the info, I will write a full reply tomorrow as I'm not very well today, but I wanted to let you know the results after I ran your height and weight through a BMI calculator:

Normal weight for this height is 108 - 146 lb (49 - 66 kg)
Height: 5'4" (163 cm)
Weight: 179 lb (81 kg)
BMI: 30.72

20-25 is normal, 25-30 is overweight, and 30-35 is obese, so you are only just inside the obese category. I'm sure you will get your weight back under control with time, you have so much on your plate I can understand why it's hard to make progress with it. I just needed to run the numbers as I couldn't get my head around the lbs - I use kgs. I asked about weight because initially I wondered if you might be significantly overweight because of the initial AHI of 70, which most times seems to be associated with weight, though obviously not always.

In my totally amateur opinion, I wonder if your fatigue and daytime sleepiness is linked to one or more non-apnea sleep disorders, that would normally get diagnosed from a sleep study. It may be possible to get your existing sleep studies reviewed by someone, and maybe you don't need a re-study at this point. People often post the summary report in the forum and get comments on it - I am indeed hoping some others comment in this thread for you, as there are people here who know endlessly more about sleep disorders than I do.

I wish I could help more... but I offer you my empathy, from one complex chronic illness patient to another.

[Julie]

I wonder if you're not having GERD overnight without realizing it... never mind Zyrtec... and that could be messing with your sleep. Or if Plaquenil is causing the weight gain... have you Googled its side effects - cortisone is known to provoke weight gain? Often the answer to Gerd is to raise the head of the bed (no more than) 4-6" inches on blocks and back off the acid reducers as they can provoke acid production if your body needs more (some, anyway) to digest food... that's not an alternative/herbal/quack opinion, but quite a well known one, though I don't know if I'd suggest you use apple cider vinegar as the answer (many do). Maybe just a small TUMS before bed.

[tuzacat]

Thank you, Blue Sky and Julie, for your thoughtful responses. Blue Sky, I am so sorry you are not feeling well! Last night my AHI was 4.1 - 3.9 was CA's. I was on the machine for about 8 hours. Woke up several times, had some dreams. I decided not to take the Meloxicam after dinner to see if it would make any difference - one of it's side effects could be insomnia but since I'd taken it intermittently for a while with no results like that I didn't think that was the cause. I took a Zaleplon but, as the doctor told me, it gets you to sleep but won't keep you there which has been my experience with it. I will try tonight with no Meloxicam after dinner and bag the Zaleplon. Looking back, many of these meds were prescribed at approximately the same time by different doctors. I looked them all up and ran them by the pharmacist as well.

Julie, maybe it is the Zyrtec. It didn't occur to me because it makes me very sleepy. When I first started taking it I stopped having to use the hops tea because it knocked me out. I actually cut the pills in half because it makes my mouth so dry on BiPap. I think I'll cut it into a quarter tonight and see what happens. I started taking it in October just prior to surgery at the doctor's insistence. I feel like a scientific experiment. I did have a GERD years ago and was put on various PPI's and even had a Barret's Esophagus diagnosis. However, I was still having the reflux; it just wasn't acidic anymore. PPI's are very bad for you! I started to use a variety of natural things from flax seed tea to ACV and eventually weaned myself off the Proton Pump inhibitor's. When I went back for my next biopsy, lo and behold, no Barret's Esophagus. The doctor was ok with what I was doing and I don't have to have the every other year checkups anymore. I am trying to alkalinize with a little lime juice and baking soda a la Earth Clinic.The weight gain started long before taking Plaquenil - I've only been on it a 2.5 months. I don't want to stop because it really is helping the pain.

Blue Sky, thinking about some of the things you said it does make me wonder if it is something more than sleep apnea since even when I was getting good therapy I was still tired and almost always woke up once a night. I do understand that fatigue is an RA symptom, though.

[tuzacat]

Blue Sky, I just checked my sleep dr.'s credentials and he not only founded the sleep center at the hospital but he is board certified in sleep disorders. So, hopefully, when I go back he will be able to determine if what's going on is more than the meds I'm on. Fingers crossed. Here's from the hospital's website:
Dr. Dinkla earned his Doctor of Medicine from the University of Miami , School of Medicine . He received additional training in Polysomnography and Sleep Disorders Medicine at Stanford University in California and received his board certification in Sleep Medicine Disorders by the American Board of Sleep Medicine and in Neurology by the American Board of Psychiatry and Neurology.

[BlueSky72]

That's good that he's trained as a sleep doctor, I have often seen posts on here saying the person's "sleep dr" is a neurologist and it eventually turns out that there isn't sleep medicine training to back it up. IMO a dr needs to have a background in respiratory or ENT plus sleep medicine quals before they can diagnose and treat the full range of sleep disorders. But occasionally I see a neurologist such as yours who has the training.

I encourage you to get a copy of your sleep study reports and post them in the forum (without your name and other personal details of course).

I'm not well and need to focus on myself for the next few weeks so I'll sign off for now. Good luck with getting your sleep issues sorted out.