Treatment resistant depression and UARS

[Depressed1]

Hi, I have a question for anyone that is dealing with UARS. I am currently on disability for severe treatment resistant depression (28 unsuccessful med trials over 18 years, electroconvulsive therapy, many doctors, lots of therapy, tried exercise and meditation, etc). I recently had a sleep study - it was not positive for sleep apnea. My sleep doc, however, knows that I have a high arched palate (from being born with a cleft palate that was corrected orthodontically) and large tonsils (about a 3+). I have many EEG arousals on the sleep study but no corresponding RERAs, hypopneas, or apneas. I found research studies of treatment resistant depression cases where UARS was the culprit and things like a palate expansion successfully solved depression issues (even in patients like me who failed to respond even to electroconvulsive therapy). My doctor has no data to justify surgery, etc. but he is having me try a CPAP just in case (I start next week). I am also going to an ENT specialist who has a special interest in sleep medicine. The research I have looked at is possibly out of date and this UARS issue seems to be controversial in sleep medicine. All of the articles I have read about UARS mention esophageal manometry as the gold standard diagnostic tool but no lab really offers it near me (if there is anyone on this forum who lives in Colorado and knows of a lab that does perform esophageal manometry, please let me know!!). Do any of you have any special knowledge you could share with me? In your experience, was a typical polysomnography inadequate to diagnose your UARS? I realize that this is a shot in the dark and the UARS diagnosis may not apply to my case, but if anyone has anything to offer, I would appreciate any help or advice. I am hoping to work again and find a solution to this relentless depression and fatigue!! Thank you!

[ChicagoGranny]

(if there is anyone on this forum who lives in Colorado and knows of a lab that does perform esophageal manometry, please let me know!!)

Call:
American Academy of Sleep Medicine
2510 North Frontage Road, Darien, IL 60561 Telephone: (630) 737-9700

Ask about labs near you.

Good luck!

[Depressed1]

ChicagoGranny,
Thank you very much! I really appreciate your help! I am new to this whole arena so thank you! I will call and let the forum know what they say. Have a great day!

[ChicagoGranny]

I will call and let the forum know what they say.

Thank you. When I make a recommendation, it's good to get feedback to see whether AASM was helpful.

[jnk...]

Sleep troubles can sometimes be at the root of depression, so doing all that can be done to improve sleep sometimes helps with the depression. This includes following good sleep-hygiene principles, which are especially important for those of us with mood problems.

However, depression itself, when sleep is not the root cause, can also cause some people to have more arousals during sleep. And certain treatments can contribute to that too. So having arousals during sleep (which can look a lot like UARS) does not necessarily always prove that sleep is at the root of the depression. In those circumstances, successful treatment of the depression itself, apart from sleep, can help the sleep. So the key may be to keep trying things that might work while not jumping to conclusions too quickly, especially when it comes to surgeries.

I applaud your efforts to thoroughly investigate options and treatments. When it comes to what is presently known about interactions among certain aspects of sleep, depression, and some depression treatments, the information at the following link may be helpful to you: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548844/

Keep a doc fully in the loop before making any decisions about meds, though. It is a team effort, even when we do research to keep informed of possibilities for ourselves.

[ChicagoGranny]

Depressed1

Sorry, but I skimmed over your well written post to give you a quick reply with the contact info for AASM. Permit me to make a few other comments.

high arched palate (from being born with a cleft palate that was corrected orthodontically) and large tonsils (about a 3+)

You don't say which of the three grading scales the 3+ is referring to. But, in any of the three cases, 3+ tonsils block a large part of the oropharyngeal opening. Hopefully, the ENT you plan to see has a good understanding of how this affects sleep-breathing. Should the ENT recommend tonsillectomy, I encourage you to give it serious consideration. On the other hand, UPPP is a much more serious matter with permanent side effects.

Hopefully, you will also give us a report on the ENT's opinion.

he is having me try a CPAP just in case (I start next week).

Would you let us know the exact model of the machine, the machine settings and mask model? There are some machines ("bricks" and "straight" CPAPs) that are generally considered by experienced forum members to be inappropriate for newbies. Unfortunately, we still find these being prescribed by some doctors.

[Depressed1]

Hi Chicago Granny and jnk,
Sorry it took me a while to get back to you both!

Ok, so Chicago Granny - I called the American Academy of Sleep Medicine and asked about esophageal manometry. The woman I spoke to basically just directed me to their accredited facilities locator, perhaps a link that is helpful to everyone on this forum:

http://www.sleepeducation.org/find-a-facility

I called a few of the facilities I had not previously called in northern CO and none of them do esophageal manometry. I believe it was used when UARS was first discovered and the polysomnography technology has supposedly improved for finding UARS (many research papers do dispute this, however). One of the facilities did mention "Drug Induced Sleep Endoscopy" which they said an ENT would be able to order. I have a feeling that this may be an issue, however, if you need the sleep apnea diagnosis to get the endoscopy covered. I will let you know what the ENT says (I see her on the 11th and I am hopeful - her bio said she has a special interest in sleep medicine).

I believe my sleep doctor said he used the Brodsky scale for the tonsil size. They are definitely large and both touch the uvula - most doctors who look in my mouth say "Whoah!" and assume an infection but I actually rarely have infections. I am very interested in what the ENT is going to say - do you know of other scales I should know to ask about?

In terms of the CPAP - it is a ResMed AirSense 10 Autoset for Her. It is used (the previous owner used it for 124 hours and couldn't tolerate it), but I am having my sleep clinic clean it thoroughly. The mask that came with it is an F&P Eson large...I go in tomorrow and they will decide if the mask I got is adequate. I have read that a nasal CPAP is better for UARS than a mask? Do you know if that is true? Any CPAP suggestions, I am all ears!

jnk,
Thank you very much for the article on antidepressants and sleep! I have actually read that a few times. I am, unfortunately, well aware of the affects all psychiatric drugs have on sleep (having done 28 med trials over 18 years - to explain the sheer number of trials - they thought I was bipolar and were wrong, so I tried those meds too). I also know that depression itself presents a fascinating and frustrating question of "the chicken or the egg" when it comes to sleep. Does the depression cause the sleep problem or does the sleep problem cause the depression? Do the meds that you are taking help the sleep/depression or make it worse? It is so frustrating!!! This is part of why I am exploring this hypothesis. I am aware that it is a total and perhaps naive shot in the dark (: My life has been literally shattered by severe relentless and unexplained depression. I have tried years of meds, no meds, therapy, exercise, dietary changes, meditation, and I practice sleep hygiene very carefully yet depression persists. If a sleep disorder is even partially responsible, I am willing to at least try a CPAP and an ENT visit. This is not to say that I am not open to hearing anything this forum has to offer in terms of medication/depression/sleep advice. I am not going to let this depression win, so share whatever you can, I do appreciate it! Thank you for your help and your response!

[ChicagoGranny]

I believe my sleep doctor said he used the Brodsky scale for the tonsil size. They are definitely large and both touch the uvula - most doctors who look in my mouth say "Whoah!"

That says enough. I am guessing a tonsillectomy is in your future. I am also hoping a tonsillectomy will resolve any sleep-disordered breathing AND depression!

ResMed AirSense 10 Autoset for Her

Great machine!

I have read that a nasal CPAP is better for UARS than a mask? Do you know if that is true?

I don't know about that, but you should start with a nasal mask. If you find that mouthbreathing/leaking can't be controlled, you might need to go to a full face mask.

It will be interesting to see what CPAP pressure settings they start you with. Often, doctors screw this up.

[jnk...]

I usually try not to make specific recommendations, but based on the comments you've made and issues you've raised, if I were in your shoes, there is one place I would likely check out, even if it meant travelling and staying in a motel . . .

https://sleeptreatment.com/patients/ind ... Itemid=515

Further reading . . .

http://sleeptreatment.com/index.php/men ... leep-first

Krakow's team of people can sometimes seem a little loopy, but trust me, they aren't a cult.

And the man do have credentials:

http://www.nightmaretreatment.com/index ... Itemid=191

Dr. Krakow's research group is one of the most published on the evaluation and treatment of sleep disorders in mental health patients, including more than 30 peer-reviewed papers and abstracts in this field. In addition, he has authored or co-authored four books on this topic as well. Dr. Krakow's research teams have consistently shown that insomnia and mental health patients frequently suffer from undiagnosed physical sleep disorders, which prevent them from resolving their sleep complaints, and which therefore often prevent them from improving their mental health.

[musculus]

Hi, I have a question for anyone that is dealing with UARS. I am currently on disability for severe treatment resistant depression (28 unsuccessful med trials over 18 years, electroconvulsive therapy, many doctors, lots of therapy, tried exercise and meditation, etc). I recently had a sleep study - it was not positive for sleep apnea. My sleep doc, however, knows that I have a high arched palate (from being born with a cleft palate that was corrected orthodontically) and large tonsils (about a 3+). I have many EEG arousals on the sleep study but no corresponding RERAs, hypopneas, or apneas. I found research studies of treatment resistant depression cases where UARS was the culprit and things like a palate expansion successfully solved depression issues (even in patients like me who failed to respond even to electroconvulsive therapy). My doctor has no data to justify surgery, etc. but he is having me try a CPAP just in case (I start next week). I am also going to an ENT specialist who has a special interest in sleep medicine. The research I have looked at is possibly out of date and this UARS issue seems to be controversial in sleep medicine. All of the articles I have read about UARS mention esophageal manometry as the gold standard diagnostic tool but no lab really offers it near me (if there is anyone on this forum who lives in Colorado and knows of a lab that does perform esophageal manometry, please let me know!!). Do any of you have any special knowledge you could share with me? In your experience, was a typical polysomnography inadequate to diagnose your UARS? I realize that this is a shot in the dark and the UARS diagnosis may not apply to my case, but if anyone has anything to offer, I would appreciate any help or advice. I am hoping to work again and find a solution to this relentless depression and fatigue!! Thank you!

Just an addition to all the good advices: high arched palate might indicate a large tongue. so ask the ENT to evaluate the tongue base as well

[Depressed1]

Thank you musculus! I meet with the ENT tomorrow and I will have her check the tongue...it has the scalloping (indentations from my teeth which I have read is common with sleep breathing problems when the tongue is too big for the mouth) but I don’t know. I am a bit nervous about meeting with her...I will let you all know what she has to say! Thanks again for your comments!

[Depressed1]

Chicagogranny,
Sorry it took me a bit to reply...I have started the CPAP and am on night four, I believe...I am worn out! I have adjusted sort of, but my TMJ (from a car accident in 2001) has flared up terribly. The pain keeps waking me up! I am sure the machine is stressing me out...I am using this as another opportunity to practice patience! (: The doc set me at a pressure range of 4-6...the machine is an auto set, so it looks like I got up to 6... does that sound right to you? I see the ENT tomorrow, here’s hoping that I am not just out on a crazy limb here...I don’t want to lose too much sleep and just exacerbate the depression! I will let you know what she says...thanks again for your help!

[Depressed1]

jnk,
Thanks for the information on Dr. Krakow! He is interested in exactly what I am looking into, that is for sure! I will see what happens with the ENT and my CPAP experiment here and see where that goes. I am a bit short on funds and I am betting my insurance wouldn’t cover a visit to Dr. Krakow, but I will keep it in mind. I believe Stanford is one of the few sleep clinics that also believes UARS may be uniquely tethered to somatic disorders like depression, chronic fatigue, and fibromyalgia...it will be really interesting to see where future research goes in that area. Dr. Krakow is at least within driving distance for me, so thanks for letting me know about his clinic! I will also let you know what the ENT says tomorrow - for all I know, she could say my airway is just fine despite everything “looking” like a possible sleep breathing issue. It would be nice to get some direction...I feel a bit odd trying this when the sleep study showed nothing! I will keep you posted, thanks again for your help!

[Depressed1]

Hey jnk, Chicagogranny, and Musculus,
Just wanted to update you as promised - the ENT put a scope up my nose and partially down the throat - she felt that despite the large tonsils and high arched palate, my airway looked fine. So, that with a sleep study showing no breathing issues leads me to rethink. Not sleeping well for a month or more while adjusting could make depression much worse...so I have to decide if I want to keep trying the cpap or move on. I will let you guys know...i am honestly too tired to think right now. I do want to say that I really appreciate your help and all of the information you shared! Thank you!

[jnk...]

You may want to at least call the Krakow dudes. They used to have a team that specialized in getting coverage out of insurance for somewhat experimental high-pressure PAP for super-stabilizing the airway to see if that helps.

But thanks for continuing to keep us informed, either way.