Impressions of data

[Cam12]

Thanks. I’ll do that. Should have something to post today or tomorrow. Had a terrible night last night. May post the same data as you suggest for that night as well. I’m so tired everyday and days like this are tough to get through...even to do simple things like read and respond to messages. Thanks for your patience and help.

[Cam12]

I think I have what you asked for. I included another night. Please let me know what you think, if you need more data, etc..

[Cam12]

I'm going to be other opinions here today.

First your numbers are extremely good. Even better than what they have said. BUT

The flow chart looks very rough and ragged to me it should look solid and smooth at this scale.  Your volume charts are pulsing where they should be fairly even.

I would like to see a few 2 minute segments of your flow chart.

My initial impression is that you should be seeing a pulmonologist.



Show him these charts plus the 2 minute segments I suggested.
 I doubt very much if what I am seeing is apnea related.  Your breathing is looking distressed to me but I am neither a Dr nor a specialist in that area.

I suspect you do have apnea because you are here but that is very well treated.

I would try increasing your EPR to 3 and increasing your minimum by 2 which is 1 more than the EPR increase.

I would not be surprised if a BiPAP or ASV is in you future to manage your breathing.  I would have suggested an EPR of 4 but your machine is not capable of that. 4 falls into the BiPPP range such as the VAuto.

Again IMHO you need to see a pulmonologist

Fred

Thanks very much for your thoughtful response Fred. Sorry for the delay....havent been feeling very good. Will try your suggestion re: EPR and minimum. Will also speak to my sleep specialist re: seeing a pulmonologist. Here are 5 min and 30 min segments from same night. The pattern is pretty consistent nightly. Not many events but ragged charts. Would appreciate and further insights, suggestions and concerns. Thanks again.

[Gideon]

I don't see a significant issue in your detailed view and your numbers remain excellent.  The detail doesn't show anything I see as significant so I'll retract the Pulmonologist suggestion.

The main question is how do you feel?

[Cam12]

I don't see a significant issue in your detailed view and your numbers remain excellent.  The detail doesn't show anything I see as significant so I'll retract the Pulmonologist suggestion.

The main question is how do you feel?

I guess that’s good news, though as you can imagine from my following answer to your question, I was hoping you would see something. Hopefully this isn’t TMI : I feel various degrees of awful every day, primarily extreme sleepiness/lethargy and major depressive symptoms which quickly get worse after a couple of days of poor sleep and then resolve completely the next day (or after a good nap). No exaggeration but I have 1-2 days/yr that I feel refreshed after sleep. I have severe OSA without therapy as well as severe PLMD which is quite variable based on video taping myself. There are many days, like last week, when I sleep 9 hours, am up for 1.5hrs, sleep for another 1.5 hrs, up for another hour, then take another 2.5 hr nap. The urge to sleep is overwhelming. If I try to resist it, I can’t stop crying. My life is great otherwise and pretty stress free - nothing that seems to precipitate the depression/crying except feeling particularly tired/lethargic. The crying spells sometimes happen in public places and I have to leave the store or whatever. During these times I’m also irritable, can’t concentrate on anything (reading is impossibly frustrating due to not comprehending simple sentences/paragraphs) and as a cruel cosmic joke, have tend to have worse insomnia as well. To put it bluntly, if my mother was gone and I didn’t have children and a wife who love me, I would have checked out years ago. The other thing, which is equally puzzling And keeps me going, is that these more severe symptoms go away even more quickly than they appear. I can be in really bad shape in the am, and as happened last week, took a nap and felt back to normal. The change is like a light-switch...really bizarre. I’ve recently been reading about the possibility that I have a form of Transient Narcolepsy-cataplexy Syndrome...which makes sense given that one of the causes is abrupt antidepressant discontinuation (Sertraline) and then immediately starting Venalexine. My PLMD started suddenly 2 days after the discontinuation. Unfortunately, all the sleep=specialists I have seen thus far (4 over 14 years) have known very little about PLMD and don’t have a clue about what is going on - the last 3 refusing to do anything besides stick to the current course. Despite my current sleep specialist having all this information, he refuses to prescribe Modafinil which has been extremely helpful in the past and has also contributed to me keeping going. To end on a good note, I’ve recently been seeing a Movement Disorder specialist who, just today, agreed to try some other treatment approaches and is referring me to a sleep specialist at the university. It gives me hope that things can still improve. Hope this wasn’t TMI. Thanks for your help on this....that also keeps me going

[Gideon]

I don't see a significant issue in your detailed view and your numbers remain excellent.  The detail doesn't show anything I see as significant so I'll retract the Pulmonologist suggestion.

The main question is how do you feel?

I guess that’s good news, though as you can imagine from my following answer to your question, I was hoping you would see something. Hopefully this isn’t TMI : I feel various degrees of awful every day, primarily extreme sleepiness/lethargy and major depressive symptoms which quickly get worse after a couple of days of poor sleep and then resolve completely the next day (or after a good nap). No exaggeration but I have 1-2 days/yr that I feel refreshed after sleep. I have severe OSA without therapy as well as severe PLMD which is quite variable based on video taping myself. There are many days, like last week, when I sleep 9 hours, am up for 1.5hrs, sleep for another 1.5 hrs, up for another hour, then take another 2.5 hr nap. The urge to sleep is overwhelming. If I try to resist it, I can’t stop crying. My life is great otherwise and pretty stress free - nothing that seems to precipitate the depression/crying except feeling particularly tired/lethargic. The crying spells sometimes happen in public places and I have to leave the store or whatever. During these times I’m also irritable, can’t concentrate on anything (reading is impossibly frustrating due to not comprehending simple sentences/paragraphs) and as a cruel cosmic joke, have tend to have worse insomnia as well. To put it bluntly, if my mother was gone and I didn’t have children and a wife who love me, I would have checked out years ago. The other thing, which is equally puzzling And keeps me going, is that these more severe symptoms go away even more quickly than they appear. I can be in really bad shape in the am, and as happened last week, took a nap and felt back to normal. The change is like a light-switch...really bizarre. I’ve recently been reading about the possibility that I have a form of Transient Narcolepsy-cataplexy Syndrome...which makes sense given that one of the causes is abrupt antidepressant discontinuation (Sertraline) and then immediately starting Venalexine. My PLMD started suddenly 2 days after the discontinuation. Unfortunately, all the sleep=specialists I have seen thus far (4 over 14 years) have known very little about PLMD and don’t have a clue about what is going on - the last 3 refusing to do anything besides stick to the current course. Despite my current sleep specialist having all this information, he refuses to prescribe Modafinil which has been extremely helpful in the past and has also contributed to me keeping going. To end on a good note, I’ve recently been seeing a Movement Disorder specialist who, just today, agreed to try some other treatment approaches and is referring me to a sleep specialist at the university. It gives me hope that things can still improve. Hope this wasn’t TMI. Thanks for your help on this....that also keeps me going

No not TMI,  here the more info the better.  That is above my pay grade, but.  It sounds like you are on many meds, Take a list of your meds and consult with your pharmacist showing him/her this memo asking if your meds/combo of meds could be causing your issues, and you want to take any findings to your Dr.  I would also do the same thing with your Dr.   Do note to your sleep specialist that you do know that your apnea numbers with CPAP are Excellent, but you are still having the issues above.  Take him the above charts including the detail charts.  It all shows you are trying.

[Cam12]

I definitely agree that a review the medications along with CPAP data and a new PSG is in order when I meet with the new sleep specialist. I’ve tried to reduce the medications I take for the PLMD 3 times over the past 2 years - once my initiative/suggestion, the other 2 forced on me. Symptoms have always come back within a week, began occurring during the day as well (as expected). My daytime lethargy worsened dramatically and my mood was dangerous. Fortunately, while I had to really fight to have the medications returned to the previous dosage and the first 6-7 months of this years was the worse period of my life, my sleep doctor finally returned me to previous dosage in June. The deciding factor? After he refused, I INSISTED he watch a video I had taken of me sleeping with the movement occurring every 15-45 seconds for 68% of the night. One stretch 3.5 hrs straight. He was so “freaked” he referred me to the Movement Disorder specialist and literally told me “What you have going on there is beyond my training. I’m not going to be able to help you with this (the video). I’ll see you about OSA issues but this is beyond what I can help you with”. Fortunately, he’s continued to prescribe the medications. I have a feeling that the the EEG data will be the way to better evaluate why I’m still so tired, despite not having a lot of movements some nights. The correlation doesn’t appear as strong as I once thought. One clue may be that in 4 sleep studies over 14 years, i’ve never shown any N3 sleep - 0%. I’ve brought this up with my doctors and, as part of the reason I fired the sleep doctor before the one I see now (not for long), declined to do a PSG or other testing and, no crap, told me that “people’s skulls don’t allow this (reading N3 sleep). The skull is too thick to take these readings”. This is what I’ve had to deal with. One of the medications I take for the PLMD is Clonazapam. He wanted me to quit cold turkey, knowing I also have depression and anxiety. Most medical websites say that not only should you never, ever, quit Clonazapam cold-turkey, at least half go so far as to say reducing or stopping Clonazapam should ALWAYS be the patient’s decision (that’s how bad withdrawal is). Anyway, as I say, hopefully on to better doctors and treatments. In fact, last night the Movement Disorder specialist said she’ll prescribe a new medication I’ve, coincidentally, practically begged to try for years - Lyrica. It doesn’t have the dependence and withdrawal profile that Clonazapam has and if effective, hopefully I’ll be able to wean off Clonazapam. I think there may be a transient narcolepsy-carataplexy syndrome angle here too based on how quickly my energy levels decrease (5-10 minutes) as well as how quickly they resolve. Research I’ve seen points towards REM sleep patterns occurring during the day. I also have other symptoms of narcolepsy-carataplexy e.g.) wakeful sleep paralysis (very frightening). I’m just happy to have someone FINALLY taking me seriously. Part of this writing is cathartic for me but, I also think there may be others that have SDB and also have similar symptoms. Hopefully this will help in confirming their not alone as well as lessons learned. I’ll post back here in the next couple of months to update. Thanks agin for listening and the feedback Bonjour. Much appreciated.