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Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
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Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
I do not seem to be making progress with my sleep doctor because he keeps ignoring my Central Sleep Apnea component revealed in my very first non-CPAP sleep study. I present 25% OSA/ 75% CSA in my initial sleep study. However, after I finished with my follow up meeting with this doctor, he recommended a CPAP because at the time they could not do a titration study due to covid, so I took the CPAP as an option. Because of my insomnia and CSA though, I ended up having to go into my PCP at another clinic branch, and demand that they give me sonata and that my CSA was not addressed by this other doctor. Eventually, I did get the titration study done. I have yet to see the results, but will be having an E-visit with my doctor on April 4. The titrationist indicated that they did not move on to the ASV or Bipap. So unfortunately, I am stuck with a A/CPAP. Also, on the night of the titration, they gave me an ambien, which I think affected the outcome of the study. Right after I got on the sonata, and about a month before the titration, I had problems complying with the machine itself and the mask, so in order to still comply with insurance, I wore the mask during the day while I worked from home, and had the mask off at night and exclusively focused on using the sonata to get my sleep cycle back on track. It now is (sort of) back on track.


Now i am having lower AHIs on average, but i think it is due to the sonata. But the sonata (5mg) only helps with sleep onset and seems to wear off halfway through my sleep cycle and centrals start to re-emerge near the morning, causing interruptions in my longer, morning REM cycles. I'm dreaming for the first time in decades and I am having nightmares. Its awesome, but it sucks because I need to be on a stronger amount I believe of ambien, or some sort of medication. Diamox?

Has anyone else encountered sleep doctors denying the reality of CSA? I don’t have a lot of time in this virtual visit, to make my case. Can someone take a fresh look at my sleep study, and tell me how i can quickly get to the point and how do i politely put my doctor on the spot? It's now or never with this guy and I think I need meds, and probably a whole new sleep study without medication that night. The problem is just, when I'm having complete insomnia, its impossible to sleep or know when I'll sleep, which doesn't help the sleep study. But if I just take an ambien I'm out cold, with low or no CSAs. But unisom, and melitonin do absolutely nothing. help!




Sleep study here:

Progress Notes
Progress Notes by (blank) (blank) at 9/27/2021  3:30 PM
Message sent to Sleep Specialist to schedule acti-watch for patient.
(blank) (blank), MA
 
Progress Notes by (blank), MD, MD at 9/27/2021  3:30 PM
(blank) is a 33 year old male who is being evaluated via a billable video visit.  
 
The patient has been notified of following: 
 
"This video visit will be conducted via a call between you and your physician/provider. We have found that certain health care needs can be provided without the need for an in-person physical exam.  This service lets us provide the care you need with a video conversation.  If a prescription is necessary we can send it directly to your pharmacy.  If lab work is needed we can place an order for that and you can then stop by our lab to have the test done at a later time.
 
Video visits are billed at different rates depending on your insurance coverage.  Please reach out to your insurance provider with any questions.
 
If during the course of the call the physician/provider feels a video visit is not appropriate, you will not be charged for this service."
 
Patient has given verbal consent for Video visit? Yes
How would you like to obtain your AVS? Mail a copy
If you are dropped from the video visit, the video invite should be resent to: Text to cell phone: -
Will anyone else be joining your video visit? No
If patient encounters technical issues they should call 612-672-7266
 
 
Video-Visit Details
 
Type of service:  Video Visit
 
Video Start Time: 3:30pm
Video End Time: 4pm


Originating Location (pt. Location): Home
 
Distant Location (provider location):  M HEALTH FAIRVIEW SLEEP CENTER MINNEAPOLIS 
 
Platform used for Video Visit: AmWell
 
Virtual visit for review of sleep testing results.
 
Assessment:
- Moderate OSA (AHI 21.3, RDI 27.9) with sleep-associated hypoxemia.  Prolonged desaturations seen in supine REM.
- Rare PLM's on PSG
- Persistent muscle twitching / fasiculations arising from sleep and note from patient of other people with alopecia universalis reporting similar sleep concerns.  DDx is broad including PLM's, hypnic jerks, propriospinal myoclonus, unknown.
 
Plan:
- Start CPAP auto-titrate 5-15 cm H2O
- Actigraphy x 2 weeks to better assess sleep-wake pattern and if evidence of increased body movements during sleep
 
SUBJECTIVE:
(blank) is a 33 year old year old male.
 
Pertinent PMHx of ADD, obesity, HTN, depression, anxiety, alopecia universalis.
 
Appointment note mentions chronic insomnia, hypnic jerks, reportedly already practicing sleep hygiene.
 
7/19/2021 -he feels that he has had issues with insomnia and his sleep in general for many years, almost since birth.  But he was prompted to seek an evaluation at this time since working from home remotely with Covid and discussing with his family about their sleep in relation to his sleep potentially had issues.
 
He feels that he has had challenges with falling asleep and staying asleep for as long as he would remember, since childhood.  He did not necessarily identify this as an issue or abnormal since it has been this way for as long as he can remember.  But this recently changed after he was reading and talking with his alopecia universalis support group and had brought up about many different sleep disorders that have been linked with that, including hypnic jerks.  He then spoke with his parents about their sleep, and was surprised by how quickly they would fall asleep and in general lack of issues.  He does feel that his sleep affects him during the day but feeling more tired, but denies any inappropriate sleepiness.
 
Given the variability of the sleep, he finds it hard to describe his typical sleep pattern today.  He would give his sleep in general a grade of "C or C-", but on nights that he does not have perceived hypnic jerks that his sleep quality be closer to a "B or B-".  It appears that most nights he is going to bed around 11 PM, but time to fall asleep is unknown and unclear.  He feels that potentially 1 or more nights per week that he perceives little to no sleep while spending the entire night in bed.  He is also unclear about what time he gets up to start his day.  He does not seem to take regular daytime naps.
 
He has been trying to take his sleep more seriously, again discussing this with his alopecia support group.  He has purchased and started using a light box in the morning.  He has tried multiple over-the-counter sleep aids including melatonin in the past, but not felt to have appreciable benefit.  It is unknown the exact timing or dosage of these.
 
We discussed his reported hypnic jerks in more detail.  He reports he is predominantly happen as he is attempting to initiate sleep, occur most nights, and can seem to happen multiple times in a given attempt to fall asleep.  He describes this as feeling that he is falling.  He states that sometimes these can be visible, but other times have been very subtle work he does not believe other people would perceive the muscle activity.
 
He believes he does snore, but he is unsure if it is loud or regular.  He is unaware of any reports of observed apnea.  He has woken up with a gasping sensation before.
 
He was diagnosed with hypertension and started medications in his early 20s, there does not appear to be a concern currently for secondary hypertension.
 
Today - We reviewed the PSG results in detail.  We also discussed the unclear etiology of the jerky movements arising from sleep and potentially disrupting sleep.
 
ISI Total Score: 26
 
 
 SLEEP STUDY INTERPRETATION
DIAGNOSTIC POLYSOMNOGRAPHY REPORT
 
 
Patient: (blank), (blank)
Date of Birth: 6/5/1988
Study Date: 9/15/2021
MRN: 0007233408
Referring Provider: self
Ordering Provider: (blank) MD (blank)
 
Indications for Polysomnography: The patient is a 33 year old Male who is 6' 2" and weighs 245.0 lbs. His BMI is 31.4, Epworth sleepiness scale - and neck circumference is - cm. Relevant medical history includes chronic insomnia, ADD, obesity, HTN, depression, anxiety, alopecia universalis. A diagnostic polysomnogram was performed to evaluate for sleep apnea.
 
Polysomnogram Data: A full night polysomnogram recorded the standard physiologic parameters including EEG, EOG, EMG, ECG, nasal and oral airflow. Respiratory parameters of chest and abdominal movements were recorded with respiratory inductance plethysmography. Oxygen saturation was recorded by pulse oximetry. Hypopnea scoring rule used: 1B 4%.
 
Sleep Architecture: Fragmented, increased arousal index, supine REM was observed.
The total recording time of the polysomnogram was 532.0 minutes. The total sleep time was 454.5 minutes. Sleep latency was increased at 30.5 minutes with the use of a sleep aid (zolpidem 10mg). REM latency was 57.5 minutes. Arousal index was increased at 35.6 arousals per hour. Sleep efficiency was normal at 85.4%. Wake after sleep onset was 46.5 minutes. The patient spent 5.2% of total sleep time in Stage N1, 47.4% in Stage N2, 21.2% in Stage N3, and 26.2% in REM. Time in REM supine was 57.5 minutes.
 
Respiration: Moderate OSA (AHI 21.3, RDI 27.9) with sleep-associated hypoxemia.  Prolonged desaturations seen in supine REM.
Events ─ The polysomnogram revealed a presence of 25 obstructive, 71 central, and 1 mixed apneas resulting in an apnea index of 12.8 events per hour. There were 44 obstructive hypopneas and 20 central hypopneas resulting in an obstructive hypopnea index of 5.8 and central hypopnea index of 2.6 events per hour. The combined apnea/hypopnea index was 21.3 events per hour (central apnea/hypopnea index was 12.0 events per hour). The REM AHI was 25.7 events per hour. The supine AHI was 34.3 events per hour. The RERA index was 6.6 events per hour.  The RDI was 27.9 events per hour.
Snoring – was reported as moderate to loud.
Respiratory rate and pattern – was notable for normal respiratory rate and pattern.
Sustained Sleep Associated Hypoventilation – Transcutaneous carbon dioxide monitoring was not used, however significant hypoventilation was not suggested by oximetry.
Sleep Associated Hypoxemia – (Greater than 5 minutes O2 sat at or below 88%) was present. Baseline oxygen saturation was 93.8%. Lowest oxygen saturation was 77.6%. Time spent less than or equal to 88% was 5.9 minutes. Time spent less than or equal to 89% was 8.4 minutes.
 
Movement Activity: Rare PLM’s observed.
Periodic Limb Activity – There were 4 PLMs during the entire study. The PLM index was 0.5 movements per hour. The PLM Arousal Index was 0.5 per hour.
REM EMG Activity – Excessive transient/sustained muscle activity was not present.
Nocturnal Behavior – Abnormal sleep related behaviors were not noted during/arising out of NREM / REM sleep.
Bruxism – None apparent.
 
Cardiac Summary: Appears NSR.
The average pulse rate was 68.6 bpm. The minimum pulse rate was 48.9 bpm while the maximum pulse rate was 110.2 bpm.  
 
Assessment: 
Moderate OSA (AHI 21.3, RDI 27.9) with sleep-associated hypoxemia.  Prolonged desaturations seen in supine REM.
Rare PLM’s observed.
 
Recommendations:
Consider repeat polysomnography with full night titration of positive airway pressure therapy for the control of sleep disordered breathing.
Based on the presence of moderate obstructive sleep apnea and excessive daytime sleepiness, treatment could be empirically initiated with Auto─titrating PAP therapy with a range of 5 to 15 cmH2O. Recommend clinical follow up with sleep management team.
Patient may be a candidate for dental appliance through referral to Sleep Dentistry for the treatment of obstructive sleep apnea and/or socially disruptive snoring.
If devices are not acceptable or effective, patient may benefit from evaluation of possible surgical options. If he is interested, would recommend referral to specialized ENT-Sleep provider.
Advice regarding the risks of drowsy driving.
Suggest optimizing sleep schedule and avoiding sleep deprivation.
Weight management (if BMI > 30).
Pharmacologic therapy should be used for management of restless legs syndrome only if present and clinically indicated and not based on the presence of periodic limb movements alone.
 
Diagnostic Codes: 
Obstructive Sleep Apnea G47.33
Sleep Hypoxemia/Hypoventilation G47.36 
 
_____________________________________
Electronically Signed By: (blank) (blank), MD (9/26/2021)
 
 
 
 
 
10 point ROS of systems including Constitutional, Eyes, Respiratory, Cardiovascular, Gastroenterology, Genitourinary, Integumentary, Muscularskeletal, Psychiatric were all negative except for pertinent positives noted in my HPI.
 
Current Outpatient Medications
Medication
Sig
Dispense
Refill

zolpidem (AMBIEN) 10 MG tablet
Take 1 tablet (10 mg) by mouth nightly as needed for sleep .  Bring with you to sleep study.
1 tablet
0
 
 
OBJECTIVE:
There were no vitals taken for this visit.
 
Physical Exam 
 
---
This note was written with the assistance of the Dragon voice-dictation technology software. The final document, although reviewed, may contain errors. For corrections, please contact the office.
 
(blank) (blank), MD
 
Sleep Medicine
M Health Fairview Sleep Centers - University of MN  (612-273-3396)
M Health Fairview Sleep Centers - Hibbing  (218-362-6558)
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#2
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
Normal progression to treat CA is CPAP first, then BPAP, then probably ST, then ASV. Most doctors will ignore CA despite numbers like yours here. Your doctors aren't serious about listening to your complaints or the data that indicates needing ASV to treat CA. Either complain a lot more strongly, and more convincingly, or fire the docs and replace them with one that is more likely to treat CA seriously and correctly.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
As shown in our wiki Justifying Advanced PAP http://www.apneaboard.com/wiki/index.php...P_Machines it is commonly a struggle for CSA patients to obtain appropriate ASV therapy. It seems the system is designed to be frustrating enough you will give up and leave them alone. We frequently see the central apnea component ignored by sleep doctors, and many members go on to self-treat by obtaining ASV from another source to prove efficacy and move forward faster and less expensively. Since you're using Oscar, it will help to see your status with therapy by posting typical charts of your results with CPAP. We may be able to suggest settings to minimize events, or ways to move forward with an appropriate diagnosis and treatment.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
I feel for you. I had 120 Centrals and 0 Obstructive and 160 Hyp for an AHI of 51.  Diagnosed with OSA despite not having ONE single event.

I'm in Canada and had to pay my own way to MAYO to get it overturned/diagnosed properly. You may wan to give up on your doc right now and start making plans elsewhere. The Mayo in your city would be my reco. They do not f*** around there. Go straight to Dr. Dupuy or Morgenthaler.

You are correct that the Ambien killed a lot of centrals and hence completely contaminated the results. Your study is 100% meaningless.
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#5
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
(04-02-2022, 10:30 PM)Howardoo Wrote: You are correct that the Ambien killed a lot of centrals and hence completely contaminated the results. Your study is 100% meaningless.

Can explain how/why that is in a little more detail?

TIA.
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#6
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
Also a little more detail from this post since it is related:

"you should continue with the oxygen. It's not to prevent desaturations, but rather to saturate the chemo receptors making them more sensitive to CO2, this lowers the CO2 threshold and prevents overshoot which results in delayed response that repeats itself for an hour or more."

as it seems to me that could be a little misleading.

Thanks again.
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#7
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
(04-03-2022, 05:46 AM)Rubicon Wrote: Can explain how/why that is in a little more detail?

TIA.

This is a study done in 2009 I believe. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2670330/

The charts are quite easy to read and the effects of Zolpidem on CA are quite convincing.

Most patients presenting at a clinic are going to have OSA, so the risk of contamination is low, but when a patient turns up with CSA, the clinic, unbeknownst to them are influencing the results by giving them Zolpidem, (Ambien). It's a practice most will avoid because of this. Also, while Ambien significanlty decreases CSA, it can increase OSA in some cases. (see chart). This patient may have much more severe CSA than even the results show.
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#8
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
(04-03-2022, 06:46 AM)Rubicon Wrote: Also a little more detail from this post since it is related:

"you should continue with the oxygen. It's not to prevent desaturations, but rather to saturate the chemo receptors making them more sensitive to CO2, this lowers the CO2 threshold and prevents overshoot which results in delayed response that repeats itself for an hour or more."

as it seems to me that could be a little misleading.

Thanks again.

This study on oxygen can be viewed in full by looking at the PDF: https://www.researchgate.net/publication...ith_Oxygen

The actual mechanism of action is still up for debate, but I have read that on theory is that is makes the receptors more sensitive to CO2 changes.

I have used oxygen and my experience with it is that it may lower the numbers, but doesn't improve symptoms. There is a study by Dr Javaheri which is awaiting results, it should clarify the topic when that comes out. The more I read about it and talk with experts about it, the less enamoured I am with oxygen. Some get lucky with it, most don't.
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#9
RE: Having issues convincing doctor I have Either Idiopathic CSA, or Mixed CSA. Help!
As mentioned unfortunately many patients struggle to get ASV even when all signs point in its direction. If your initial sleep study indicates central sleep apnea and your CPAP SD card data indicates AHI is still significant due to central sleep apnea then it is fairly obvious that ASV needs to be considered.

All your doctor should need to make the diagnosis that further steps are required (ASV) is original sleep data and review of SD card data. If he doesn't come to the conclusion of ASV he may fall into the category of doctors that regularly fails to treat central apnea patients and then you have two options.

1) Shop around until you find a doctor knowledgeable and willing to treat your central apnea.

2) Purchase a used ASV to trial and prove its effectiveness (after which might be able to persuade doctor he should have considered it).

Unfortunately many patients end up having to use option 2.
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