Need some support (may be a bit off topic)

[bjl]

Hi,

I'm new to this community, but not particularly new to sleep apnea and CPAP. This post may be a bit off topic, but folks here seem to be pretty supportive and everyone here is familiar with at least one type of sleep disorder. So here it goes (sorry, but this is very long):

I've been suffering with a strange sleep disorder for almost two years now. Prior to that, I was having some trouble sleeping because of a recurring sinus infection. I had already been diagnosed with severe OSA (AHI = 60) years before and had used CPAP only sporadically because I didn't think it was doing much good. In retrospect, this was probably a mistake. I thought I was sleeping OK and was actually surprised when I got that diagnosis. Then I lost a bunch of weight (which I needed to do) which probably helped at least reduce the severity of my OSA.

When I started having the sinus infections, I started bouncing off the walls. I'm the type of person who completely loses it when he can't breathe through his nose. Plus I was getting very little sleep (looking back, that seems like nothing now). I saw my GP who prescribed antibiotics and also clonazepam (Klonopin) to help with the sleep and anxiety. It was magical! I took 1/2 a 1mg pill and easily slept through the night. The sinus infection resolved in a few days and I felt great. But then I had a few more sinus infections, took antibiotics, used the clonazepam. After that followed a period where I was free of sinus infections (I only rarely get them now). However, every now and then I'd have some sleep issues. Maybe it was the OSA. Maybe it was just simple insomnia that everyone experiences now and then. To make a long story short, I abused the clonazepam and ended up becoming addicted to it. I knew nothing about how addictive it was (and my doctor never told me) until it was too late. By that time it wasn't working very well and I had to up my dose. I stopped taking it (before I knew that that was a really bad thing to do). I started having worse sleep problems including frequent hypnic jerks. Even my GP didn't realize what was going on, sent me to a Neurologist who assumed it was a nervous, seizure, or psychological disorder, and prescribed (you guessed it) more clonazepam. This actually did stop the hypnic jerks, but I could still only get about 5 hours of sleep a night. I finally put 2 + 2 together and realized that the hypnic jerks were due to benzo withdrawal. I found one of the online forums for people withdrawing from benzos and weened myself off (although probably too quickly). That coupled with a really bad reaction to an antibiotic called Cipro and I haven't really been the same since...

My symptoms now are that I can fall asleep pretty easily (that's progress comparing to what I was like over a year ago), but I wake up multiple times during the night. I typically wake up from a dream. My heart rate is elevated and I often feel at least slightly anxious. I also have this "internal vibration" that feels like there's a cell phone on vibrate inside of me. I never have anxiety attacks or feel this vibration thing during the day. The only thing I'm anxious about during the day is, of course, my lack of sleep and the effect it's having on my job, my family, and my health. Almost no doctors I've seen are familiar with this vibration symptom. One neurologist I saw just said, "Oh that's just anxiety" and wanted to start me on different benzodiazepines... Strangely, I can Google "sleep vibrations" and "sleep tremors" and come up with hundreds of hits of people posting in various medical forums about this specific symptom.

My reason for posting here is not to get a diagnosis, but to ask for advice on how to proceed to get a diagnosis and possible treatment. I've already had another sleep study in which I was (re-)diagnosed with more mild sleep apnea (AHI = 15 in non rem and AHI=30 in REM). The sleep neurologist I'm seeing is sympathetic, but has never heard of the vibration symptom. And the sleep study didn't uncover any kind of neurological problem. He can offer me CPAP (which I started again a couple of weeks ago) and sleep meds which I don't want to take as they are also addictive. Although at some point, I may not have any choice. Using CPAP may be helping slightly in that it may be helping me get back to sleep between these major events. But it's not stopping them from occurring.

So I'm at a loss as to how to proceed. Should I just take the sleep meds (assuming they'll even work for me)? Plenty of people do. Do I have to go from doctor to doctor until I find someone who recognizes this condition?

Again, my apologies for the length of this post and thank you in advance for your support.

-b

[Julie]

Have you seen a cardiologist? I ask because the vibrations might be atrial fibrillation, a common development with untreated (or sometimes even treated) OSA. Not trying to be glib, but if you drink a lot of coffee, try cutting way back, especially later in the day and see if it helps (whether or not you have a-fib).

I'm unclear whether you're using Cpap (or Apap) every night or still only sporadically, but what are your pressure settings? And where exactly do you stand now re meds - what are you actually taking routinely? Have you had a recent sleep study? Results?

Without a little more info it's hard to help, much as we'd like to, so fill in some blanks and write back in this thread again.

[archangle]

Do you have software to read your CPAP data? If not, get a copy of SleepyHead and check to be sure your CPAP is working right.

You can also use it to look at the data just before you wake up to see if there's anything wrong with your breathing just before you wake up.

[Pugsy]

SleepyHead software (links in my signature) will work well with the PR System One Auto CPAP you show in your profile.
Get it and let's see if the therapy is even optimal. Maybe part of what you are experiencing in the middle of the night is related to apnea events not well prevented or maybe leaks are making the therapy sub optimal.
Start evaluating what you easily have available. Maybe something in the reports points to something that needs or could stand improvement. No guarantees that anything will be seen but make sure nothing is needs work in terms of therapy.
The one thing that comes to my mind is REM sleep...perhaps you simply need more pressure in REM sleep. It fairly common. My OSA is worse in REM sleep and I sometimes need 8 cm more than what I might need in non REM sleep. I had to make pressure adjustments to allow the machine to respond to those REM events that need a lot more pressure.
Maybe you will get lucky and that's all you need...again no guarantees but it's something that should be ruled out before proceeding down the road to figuring out what your problem is.

[bjl]

Thank you for the quick reply Julie. Here's some more info:

I actually did have a period of afib a few months back. These events were confirmed with a holter monitor. I saw a cardiologist at the time who called it "vagally mediated afib." He told me that the events were pretty mild, that I didn't have any kind of heart disease, and they don't complete understand what causes this. The afib only lasted a few weeks and haven't reoccurred since. So I'm pretty sure that these vibrations are not afib as they feel completely different and are not picked up by an EKG.

I am currently using APAP every night and have been for almost 2 weeks now.

Re: meds and lifestyle:

Through this whole ordeal I've become pretty disenchanted with Western medicine and especially how it's practiced in the U.S. I read lots of health and wellness blogs written by complementary medical practitioners and have adopted a pretty health lifestyle (which makes my condition all that more frustrating). I don't drink caffeine. I don't eat gluten, dairy, or sugar. I eat lots of veggies. I had been exercising regularly, but had to cut back a lot because I'm so fatigued. And sometimes I think the exercise exacerbated my condition. The only med I take is 10mg of Lisinopril for slightly elevated BP. That's the smallest dose and I've been taking it for years. I also take some supplements like Magnesium which I started taking back when I experienced the hypnic jerks. I also take fish oil and a probiotic. These are pretty benign supplements, but even so I experimented with stopping them just in case I was sensitive to one of them. On paper, I'm incredibly healthy...

I included the results of my recent sleep study in my original post. I didn't mention that I had a lot of difficulty getting to sleep that night (like lots of people) so they only got a few hours of data. But I was diagnosed with OSA (AHI = 15 during non-rem and 30 during REM). No CSA events. I had only one occurrence of my vibration thing during that study which didn't register on the EKG or EEG.

Thanks again.

-b

[Pugsy]

I don't really care about what the sleep study showed at this point. Your OSA is worse in REM sleep. Like I said that's common but it might make pressure needs a bit tricky. You might need more pressure in REM sleep. Just speculating right now because we have no idea what is going on in terms of therapy effectiveness and how it might relate to your feeling crappy.
I care about what the machine is reporting now with therapy. There's a whole lot more to effective therapy than just slapping a mask on.
I spent 2 weeks with sub optimal therapy until I got the software and it showed a truckload of events in REM sleep. A little pressure adjustment fixed things pretty easily and quickly.
A lifetime on the machine won't help if the therapy itself is not optimal.
Post a couple of SleepyHead's detailed daily reports...maybe something there will point to a potential problem with therapy.
Some here can look to see if anything screams out "fix me"...which might help. Gotta make sure the therapy itself is optimal before going down all those other roads to find out what might be the problem.

How to post images of what you see so we can see ...explained here.
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

[Julie]

Little thing, but could count if nutrition does... are you getting enough protein? Sometimes when people cut out many things from their diets they don't remember that a busy lifestyle does require certain elements, including enough protein and some carbs for fuel... just in case you haven't gone over what you're taking in relative to who you are, and what you're dropping. Some cut out salt too harshly and experience negative effects, others get tremors from being too stringent in other areas... something to consider.

[archangle]

Through this whole ordeal I've become pretty disenchanted with Western medicine and especially how it's practiced in the U.S.

There's a whole lot of things wrong with "Western Medicine" and the Medical Mafia that runs it.

However, alternative medicine is 95% quackery. Some of it is outright dangerous. All of it is dangerous if it causes you to skip "Western" medicine and go untreated for an otherwise treatable condition.

BTW, there's nothing "unwestern" about avoiding caffeine, dairy, sugar, etc., especially if you experiment with it and figure out what works for you.

Lisinopril/Zestril gives me scratchy throat and a cough, so watch out for that. http://www.medscape.com/viewarticle/484537_2 I suspect there might be some more systemic effects. It might be worthwhile to try a different BP med for a while to see if it helps. Be sure to get something that isn't an ACE inhibitor. Doctors can be dicks sometimes when dealing with medicine side effects from "uppity" patients.

[kteague]

Hi and welcome. I think I might have missed something - haven't seen your sleep study reports. What ever happened with those "hypnic jerks" you were having? Did your reports mention limb movements?

About the vibrations, I've looked them up also. Had read about them before but in recent times have been experiencing them for myself. At first I thought it was small earthquakes since I'm in an active earthquake area, but there was never a report of a quake at the times I felt the vibrations. I'm not aware of anything else being wrong, not sure what has changed with me. Because I'd read of so many people experiencing this sensation with no ill effects I had just dismissed it. Maybe I'll mention it to my doc next visit just to be sure.

I agree that making sure your CPAP therapy is optimized and effective is priority. I'd be concerned about taking sedating meds without first doing due diligence regarding your OSA treatment. I'm not able to speak to the addictive meds, maybe someone here will have more experience with that. You are on the right path to addressing your issues. Two weeks on APAP is a good start - just a bit too soon to assess how many of your symptoms will show improvement and how much. Good luck going forward.

[Guest]

Thank you all for chiming in so quickly. Let me see if I can respond to the various points and questions you've raised:

The hypnic jerks stopped happening a while back and I haven't had a reoccurrence in quite a while.

There were no reports of any periodic limb movements or anything like that in my sleep study.

Yes, I've already downloaded the SleepyHead software. I'm a software engineer and if this situation weren't so distressing, I'd be geeking out on this stuff. I've done an initial download, but haven't taken a hard look at the charts. A quick look shows that my AHI has been less than 5 every night so that's encouraging. There are many events of different types, but like I said I haven't taken a hard look at what they are and what they mean yet. So you're right, first step is to determine the efficacy of my APAP therapy. I'll get on that and post some results. One problem is that I'm awake for a lot of the recorded time. And I know from reading this forum a bit that the events reported by the software while awake can skew the results. I've done some of the usual things that are recommended for insomniacs such as getting rid of my alarm clock so I don't stress out about how much sleep I'm not getting. So I'm not exactly sure at what times I have these events in order to correlate that with the recorded data. Guess I'll have to rethink that.

Just so you know that I'm not just sitting around wringing my hands through all of this, I have made an appointment to see a "functional medicine" doctor in November. They're supposedly good at getting to the root of health issues. I will also be seeing a dietician as part of this.

Thank you all once again for your quick responses. I'm going to bed now. Wish me luck...

-b

[jencat824]

I agree you need to use the data from Sleepyhead to evaluate & possibly make changes to your CPAP therapy. The thing that stands out to me is the Lisinopril. Getting your Dr to let you try another BP drug would be good, there is a very old drug, Hydralazine, that might make a good replacement. Without going into a long explanation, I had over a year's worth of problems on Lisinopril & although most of mine was cough/asthma related, I remember that tremor-like feeling in the middle of the night. I'm not sure that its the same thing you are feeling, but I do remember mine went away when I was taken off Lisinopril.

In the meantime, try to make some time to get those graphs posted so our resident data experts can help evaluate how your therapy is working & what changes might be needed.

Jen

[bwexler]

When I occaisionaly felt those good vibrations, as was suggested I thought it was an earthquake or a train passing nearby or ??.
Latter I was diagnosed with AFib and was bless with a Holter Monitor on more than one occasion. It seems I have been confirmed to have aln=most constant AFib although I seldom notice it.

I would also suggest adding a recording Pulse oximeter to your arsenal so you can monitor a few more data points.

You mention you take magnesium. Are you aware it needs to be ballanced with calcium, vitamin D and a few other cofactors to be effective?
have you had you vitamin D level checked recently? It would seem low Vit D is epedemic in th US and many other countries.

[bjl]

Thanks jencat and bwexler. I'm aware of the Mag, VitD, Calcium thing. You'll hear different things from different experts. One Magnesium expert says that the ratio of Mag to Calcium should be more like 2:1 rather than some recommendations which say 1:1 or even 1:2. Right now I'm not taking any calcium supplements, but I do get some calcium from the fortified almond milk I drink. I also know that Vit D metabolism uses up Magnesium. Not too long ago I tried supplementing with around 6,000 IUs of Vit D and started feeling pretty bad. Maybe because my magnesium was being used up. I've stopped Vit D supplements for now and am getting my Vit D level checked. Yes, most people are now deficient in Vit D, but opinions vary about how much supplementation is healthy or safe. One doctor (Dr Gominak) believes that low Vit D is at the root of most sleep disorders, migraines, and other conditions.

Last night was pretty bad. I'll try to get the charts posted today.

Thanks.

-b

[bjl]

OK. Here's my first attempt at a screenshot. Please let me know if I didn't include the right information. This data is from last night which was a particularly bad night for me. I couldn't fall asleep until about 2 AM and I think I woke up with one of my "events" about every hour. I'm pretty sure I had events at 3 AM and 4 AM. I can't say for sure how much time I was awake, but it seemed like a lot. This is far fewer over all events than I've seen on previous nights. I can see my respiration rate drop down at around 3 AM and 4 AM so maybe that's significant?

-b

[Pugsy]

So to be clear..you think you were awake until at least that first break in therapy where the machine was turned off and then back on around 1:40 AM? So that entire first sleep session you were awake??

The respiration rate graph...while it looks like a lot of variations...that's not all that unusual.
Your leak rate graph is absent. Was it very exciting?
Your pressure graph only shows the normal pressure probes (those spikey things are the pressure increasing slightly to test the airway)...they look more exciting and bigger than they really are because the pressure graph scale is zoomed in a lot.
Your 6 cm starting pressure never really changes beyond the normal pressure probes to 7.5 cm...which is the normal 1.5 cm pressure increase that is used for pressure probes.
Same thing about the respiration rate...zoomed in tight makes mountains out of mole hills.
We see the mountains out of mole hills often especially with the leak graph.

What do you mean "bad night"? Difficulty falling asleep or the unknown "events" that seem to wake you in a panic or both.
Insomnia is a nasty little demon...both the sleep onset and sleep maintenance (staying asleep).

Unfortunately I don't see anything standing out on this report that is screaming "fix me". Whatever issues you may have with falling asleep and staying asleep...I don't see anything that we maybe could blame it on in this report unless the leak is an issue but I have my doubts if you leak line will help out much.

For future images of your reports...be sure to include the leak graph and on the left side switch over to the Details tab instead of the Events tab. We can't see overall AHI and category of event breakdown when using the Events tab.
Though I can tell with a rough estimate showing the events that were flagged and the hours recorded that the AHI isn't all that high...plus if that first session before the therapy break was when you were for sure awake...those don't count anyway. Awake events are removed from the equation.

You may classify last night as a "bad" night in terms of insomnia issues and whatever it is that is causing you to wake in sort of a panic...but it isn't apparent on this report. Unfortunately the report isn't particularly helpful. The machine doesn't know if you are awake or not. It is limited to offering only the data that it collects and even that is sometimes difficult to evaluate. Sometimes we get lucky and something stands out but I don't see it here.