Need Sleep Specialist for non-OSA Sleep Problem

[Slartybartfast]

My wife, RN with 30 years' experience, has a number of physical problems. Broken back from a fall, nerve pain, and a number of connective-tissue injuries that seem to be slow to heal. Orthopod said her shoulder and later, her Achilles' tendon were the consistency of Jell-o when he saw them during surgery. Lots of pain and insomnia unrelated to pain. I gather that post-menopausal women frequently suffer from insomnia. Specialists we've contacted all say, "Yeah, symptoms indicate there's something there, but there's no known disease state that encompasses those symptoms, so there's no known cure, and I can't prescribe anything other than Ambien."

We applied to have her evaluated at the Mayo Clinic, but they rejected her because she didn't have a definitive diagnosis. Which is why we wanted to get her in to the Mayo in the first place. Grrrr!

She's currently under the care of a sleep doc' who's primarily a pulmonologist. This Doc immediately, as in, without thinking, prescribed a CPAP machine and seems to be unaware that OSA isn't the only cause of sleep problems. She keeps wanting to tweak humidifier settings, etc. I've sat in with my wife during Zoom office visits and have had a tough time keeping my lip zipped. She's like a one-trick pony. Only knows one thing. My suspicion is that my wife needs a sleep specialist whose primary training is as a neurologist. We're in the Seattle-Tacoma area, so it's not like there's any lack of medical talent within driving distance.

I wonder whether anyone else out there has any ideas on where to look for help.

Thanks!

[kbh209]

My wife, RN with 30 years' experience, has a number of physical problems. Broken back from a fall, nerve pain, and a number of connective-tissue injuries that seem to be slow to heal. Orthopod said her shoulder and later, her Achilles' tendon were the consistency of Jell-o when he saw them during surgery. Lots of pain and insomnia unrelated to pain. I gather that post-menopausal women frequently suffer from insomnia. Specialists we've contacted all say, "Yeah, symptoms indicate there's something there, but there's no known disease state that encompasses those symptoms, so there's no known cure, and I can't prescribe anything other than Ambien."

We applied to have her evaluated at the Mayo Clinic, but they rejected her because she didn't have a definitive diagnosis. Which is why we wanted to get her in to the Mayo in the first place. Grrrr!

She's currently under the care of a sleep doc' who's primarily a pulmonologist. This Doc immediately, as in, without thinking, prescribed a CPAP machine and seems to be unaware that OSA isn't the only cause of sleep problems. She keeps wanting to tweak humidifier settings, etc. I've sat in with my wife during Zoom office visits and have had a tough time keeping my lip zipped. She's like a one-trick pony. Only knows one thing. My suspicion is that my wife needs a sleep specialist whose primary training is as a neurologist. We're in the Seattle-Tacoma area, so it's not like there's any lack of medical talent within driving distance.

I wonder whether anyone else out there has any ideas on where to look for help.

Thanks!

Possibly check to see if there's a neurologist based sleep specialist in your area. If there isn't, you may want her to be tested again in a sleep study. It's possible she may have central sleep apnea that may be secondary to her primary ailments. CSA is where the brain doesn't communicate with the body, telling it to breath.

[colomom]

My wife, RN with 30 years' experience, has a number of physical problems. Broken back from a fall, nerve pain, and a number of connective-tissue injuries that seem to be slow to heal. Orthopod said her shoulder and later, her Achilles' tendon were the consistency of Jell-o when he saw them during surgery. Lots of pain and insomnia unrelated to pain. I gather that post-menopausal women frequently suffer from insomnia. Specialists we've contacted all say, "Yeah, symptoms indicate there's something there, but there's no known disease state that encompasses those symptoms, so there's no known cure, and I can't prescribe anything other than Ambien."

We applied to have her evaluated at the Mayo Clinic, but they rejected her because she didn't have a definitive diagnosis. Which is why we wanted to get her in to the Mayo in the first place. Grrrr!

She's currently under the care of a sleep doc' who's primarily a pulmonologist. This Doc immediately, as in, without thinking, prescribed a CPAP machine and seems to be unaware that OSA isn't the only cause of sleep problems. She keeps wanting to tweak humidifier settings, etc. I've sat in with my wife during Zoom office visits and have had a tough time keeping my lip zipped. She's like a one-trick pony. Only knows one thing. My suspicion is that my wife needs a sleep specialist whose primary training is as a neurologist. We're in the Seattle-Tacoma area, so it's not like there's any lack of medical talent within driving distance.

I wonder whether anyone else out there has any ideas on where to look for help.

Thanks!

I’m not familiar with docs in the Seattle-Tacoma area, but a teaching hospital would be a good place to look. If you can’t get in with a sleep doc/ neurologist since your wife is a nurse she may want to ask around, perhaps her colleagues might be able to recommend a better sleep doc.
It has been my experience that many pulmonologist/ sleep docs are singularly focused on OSA, but there are some diamonds in the rough out there.

If you can’t find anyone locally it might be worthwhile to keep trying Mayo once things settle down with COVID. Did your wife have a referral to Mayo? If you can get her foot in the door and she is gets a Mayo patient ID number you may have an easier time getting appointments. My son is medically complex and has a few sleep disorders including OSA, he’s been to Mayo a few times and they were great! One of the things Mayo really excels at is teamwork and communication. The different specialists and departments actually communicate and work together, which makes a huge difference for complex patients.

[Julie]

Definitely find a neurologist regardless of the sleep issues to start out - someone who can evaluate her 'condition' otherwise and then factor in sleep once all possible fixes for other things have been tried/addressed, which is not to say she does/doesn't have sleep (apnea? insomnia?) problems, but sorting out should be done the other way around.

[kteague]

Do I have the correct understanding that your wife is on CPAP? You mentioned her wanting to tweak the humidifier settings. Finding the most effective humidity settings can be important to comfortable use of the treatment. If she is on CPAP and it has been determined through machine data that her therapy is optimized, if it were me, I'd want a sleep study while using CPAP as usual to see what else might show up. Most doctors will want to redo a diagnostic study, but I think that is too often a wasted effort. I've seen a handful of sleep doctors over the years, even some neurologists, but the one who helped my neurological sleep issues (PLMD) the most was a pulmonologist. Go figure. Good luck with things. Hope you can let us know how things go. I'm interested.

[Slartybartfast]

Thanks, all, for your responses. Yes, the pulmonologist, as I said, as if without thinking, prescribed a machine for her. She wasn't diagnosed with OSA, but the Doc said she thought it might help. Pressure is, get this: 5 to 7. Really! The machine DOES eliminate her snoring, for which I'm grateful! But she never had any obstructive breathing pattern while she slept. Her problem is that she lies there counting sheep, and then reciting poetry from memory, then trying to clear her mind and visualizing [nothing]; anything to get her mind to shut down. Some nights, she's still awake, tossing and turning until 0500. The insomnia I'm sure is causing some of her problems. But nobody seems to be able to help. That's why I'm thinking a neurologist might take a swing at her condition.

Yes, we had a referral to the Mayo. But from the response we got after all the paperwork and her medical history had been sent in indicated whoever was the gatekeeper there hadn't read any of it. They wanted to see a word in the DIAGNOSIS:_________________ line. And my wife's doc wrote a summary of her treatments so far. And Mayo rejected us. Maybe try again after the Covid drama subsides.

Thanks again for y'alls' responses.

[Julie]

There are many neurologists all over, why keep pushing the Mayo thing (good as they are)?

[ChicagoGranny]

Slartybartfast

You have PMs disabled. I am unable to reply to your message. Drop me another note if you change this.

[Slartybartfast]

Ooh. Sorry about that. I haven't been on here in a while and it looks like some setting changed somehow. I'm accessible now.

[Slartybartfast]

There are many neurologists all over, why keep pushing the Mayo thing (good as they are)?

Because, even though my wife is an RN, and knows all the docs in her hospital personally, she/we can't get a definitive diagnosis for her condition. 9 surgeries since 2016. Achilles' tendon snapping for no reason/Orthopod sturgeon telling me after completing the surgical repair that the break was very unusual, it snapped clean, like it had been cut with a knife. Achilles tendons usually (he said) tear, leaving ragged edges that the surgeon can sort of weave together before suturing it together. He said he had never seen that kind of tear. And he's one of the othopedic surgeons for the local pro football team. 11 months later, my wife suddenly felt a searing pain in her hip. Local orthopod said it was nerve pain. Second opinion and imaging showed her gluteus medius pulled off the greater trochanter. Tendon pulled clean off the bone. Only one surgeon in the Pacific Northwest would agree to do the repair, and he was also a specialist who worked on the football team. 6 months later, the surgery failed, and it had to be repeated. Shoulder rotator cuff tore. Again, for no reason. Orthopedic surgeon tried to repair it but said the consistency of the connective tissue was like tissue paper. Nothing to suture together. Nothing that would hold. And then she developed a hamstring tear. Orthopedic specialist said they usually don't repair those.

Orthopedic specialist at University of Washington medical school reviewed her imaging and history and said, rather bluntly, "I've reviewed everything your surgeons have supplied me with. There is no known disease state that would explain why these things are happening to you. I can therefore offer you no treatment."

Then she developed Grave's Disease, hyperthyroidism. Drug therapy didn't help, so she had a thyroidectomy. This was notable because Grave's is an autoimmune-related disorder, and several of the specialists said they suspected some autoimmune involvement, yet Rheumatologist, also on staff at University of Washington medical school said there's something that must explain all these things happening to you, but I don't know what it can be. Keep looking until you find someone who can help you.

Then she was t-boned by a Suburban at a stoplight, breaking her hand. Hand specialist repaired the broken hand, but a year later, the broken bones were not completely healed, and remained painful.

In the meantime, chronic pain and an overactive brain is keeping my wife from sleeping. Melatonin, Doxylamine, and Ambien every night. She has saved up a small supply of opiate drugs from her various surgeries. But she has developed a sensitivity to opiates, which cause terrible itching. So they're off the table now, and fortunately, they're used up, as well. So my wife lies in bed listening to her hubby sleeping peacefully. Until around 0400, when she seems to be able to get a few hours of poor quality sleep. Chronic sleep deprivation is a serious problem, and is no trivial matter.

We had hoped Mayo would have specialists on staff that might be able to give us some insight into what's going on with the connective tissue. The sleep problem is only one part of the total overall issue.

[LoneStar]

Okay. I'm going to jump in here with what I know from my own experience.

Your wife needs to find a functional medicine doctor.

The issues you describe that she has are sending up all sorts of red flags for me. She has several auto-immune issues going on and conventional (allopathic) medicine is usually not too good at treating these other than with pharmaceuticals. While this may work for some people, it is not working for your wife.

Allopathic medicine treats symptoms. Functional medicine treats the entire body. And I realize that as your wife is a RN, she may be resistant to this way of thinking (I work in health care and I was initially).

Allopathic medicine teaches us to take a pill or have surgery to fix a problem. While in a lot of cases this works, it doesn't usually with auto-immune or long-term functional problems.

Anyway, here is a website that will give you information and will help you find a local functional medicine specialist - https://www.ifm.org/functional-medicine ... -medicine/.

[Julie]

Google Ehlers-Danlos syndrome - maybe reaching, but worth looking at.

[colomom]

We had hoped Mayo would have specialists on staff that might be able to give us some insight into what's going on with the connective tissue. The sleep problem is only one part of the total overall issue.

If you decide Mayo is your best hope and want to keep trying to get her in once things settle down with COVID you could try having your wife’s other specialists to send referrals to Mayo (maybe she could get in with orthopedics or rheumatology). If you can travel all the way to MN I would try for Mayo Rochester. The first time I took my son there we went down with one appointment, but that ballooned into a solid week of testing and seeing numerous specialists. The efficiency in the way Mayo does scheduling is amazing.

Julie mentions the possibility of a connective tissue disorder, which is something my son unfortunately has. If that is something your wife or her doctors have suspected rather than Google (there is lots of misinformation about EDS on the internet) a wealth of accurate information can be found on the Ehlers Danlos Society website https://www.ehlers-danlos.com/
Connective tissue disorders are genetic if that is something that is possibility a geneticist would be the doc to figure it out, she might not be able to get in with one at Mayo but I know of a great geneticist who left Mayo to start a private practice and he specializes in connective tissue disorders.

Good luck, I hope your wife is able to find some help!

[ChicagoGranny]

Functional Medicine

https://www.skeptic.com/reading_room/wh ... -is-bogus/

https://sciencebasedmedicine.org/quacka ... date-2014/

https://sciencebasedmedicine.org/aafp-f ... reatments/

https://sciencebasedmedicine.org/functi ... -medicine/

https://sciencebasedmedicine.org/functi ... the-other/

[Slartybartfast]

Thank you for all the kind comments. I have read them all, and have read, or bookmarked, the links for review. I'm open to the functional medicine approach, and I read whatever comes across my desk when it sounds promising. My background is as a formulation chemist for a large pharmaceutical company. In the 30 years I worked at one company (I retired in 2018), I designed and made formulations in the laboratory into which to stick newly discovered drug candidates so they could be tested in humans in clinical trials. So that's where my information filter got programmed, for better or for worse. However, my wife is an avid supplementer. There are a handful of supplements which she and her RN buds are convinced are beneficial for specific conditions, and which, it is believed, otherwise do no harm. I'll share all the links with her and we'll keep looking.

Re: the Mayo referral, her ortho-sturgeon provided the referral on the basis of the orthopedic abnormalities. But whoever it was at Mayo that screens referrals told us that without a diagnosis, they won't admit her for evaluation. My wife often says it's clear that the US has the world's best medical care. But the system of administering it is deplorable.