My long road to here, please help...

[OliveGardenFiend]

Hello all, looking for any suggestions possible... I have been to many doctors, so please forgive me for this being long because I want to provide as much information as possible...I have exhausted the search function and scoured these boards before I even thought about posting. I am open to any constructive criticism and realize that my problems may go beyond CPAP/Apnea... I'm desperate, sad and sleep deprived.

I'm a 36 year old male, 5'8", 175lbs, former smoker. I was a very active person, could run miles, used to climb 100s of floors on gym stair climber at a time, ran cross country and track in college, very athletic, moved from Colorado where I hiked mountains every single day... Then in August of 2018 I was having heavy chest pains at work for multiple days on end working in a restaurant. (I work a computer job in the morning and a retaurant job in the afternoon/evening, but I'm never there past 7pm).... My boss had a heart attack before and told me I should go to a Doctor just in case.

First visit: Found a primary care provider in my network and made an appointment. For the record, I didn't speak to the Dr. of the practice, just a nurse practitioner, which I have no problem with, but this relates to my story later... They hooked me up to some electrodes and told me I have an irregular heartbeat and referred me to a cardiologist for a EKG and a stress test which was 1.5 months out.

Second visit: about a week later... I noticed that I could not sleep. Now I had never had sleep problems in my entire life. My specific problem was that each time I was becoming heavily relaxed, I was experiencing "jerks." No professional ever called them hypnic jerks or myoclonic jerks until last thursday. Didn't sleep for 3 days and expressed my desire to sleep... Was prescribed 25mg of Trazodone and 10mg Buspirone HCL for sleep/generalized anxiety which the same nurse practitioner (not the Dr) told me to take "as needed." Well, that helped me sleep for at least 5-6 hours instead of zero so I was content for the time being. In the mean time, I was also starting to experience pain in my lower legs/calves. Not an acute pain, but a dull ache. I had stopped working out at the first sign of heart trouble so I wasn't worried about the pain.

Third visit: This time it was to the cardiologist for the EKG and Stress test... The EKG said I had stage 1/mild mitral valve regurgitation. They told me no one had ever done the stress test on the treadmill for so long with such intensity and that I was fine.

Forth visit: Went back to my primary care provider where she (nurse practitioner) said those results were normal and nothing for me to be alarmed about. She then referred me for a full blood panel which revealed I had elevated hemocrit and hemoglobin. I was then referred to a Hematologist at the cancer center of FL.

Fifth visit: Hematologist said it would be very rare for me to have anything serious but they were going to take a pint of blood and do all the major tests. Nothing except the elevated hemocrit/hemoglobin was found and I was referred for an at home sleep study.

Sleep study: I was told I had mild sleep apnea and I was referred to a medical device company where I would get my CPAP and they would set me up.

Unnamed medical device company visit: They set me up with the Dreamstation and the nasal pillows and humidifier, put me on a 7 with a ramp starting at 3.... Also want to state I have a hard night guard for teeth grinding from my dentist and they gave me a chin strap (Which I call a muzzle) because I breathe through my mouth. The unnamed medical device company also told me the nasal pillows were my only option because I have a beard.

This was it... I was finally going to be cured, I was going to rest easy and the universe would be at balance.... How naive of me!

Used my CPAP regularly and noticed that I didnt want to nap during the day and wasnt yawning as much... I went into a different doctor in a different hospital only to verify my usage on card for insurance compliance. During the visit, I told the Doctor about my leg movement issues in my sleep and he quickly wrote it off as restless leg and gave me a prescription for Pramipexiole (MIrapex) and told me I have to come see him in a month if I took the medication.... Well, I looked at the side effects and for the first time in my life did not take the medication. I was worried about "compulsive gambling" and I already bet on sports (Football, boxing, as well as gambling sites). I didnt and dont have a problem but I guess I sorta psyched myself out after reading tales online about people taking this medication and their life spiraling out of control.

Continued to use my CPAP and my legs were not just hurting now, but were progressively worse. My wife took a video of my feet twitching and moving while I slept and I took that video back to my primary care provider.

Sixth visit: At my primary care provider I went in and saw a different nurse practitioner (still hadnt seen Dr yet) and showed her video and she took my reflexes and said I had hyprereflexia and said she was going to ask the doctor about referring me possibly to another Dr/specialist. (nothing ever came of that) She also prescribed me .5mg of Ropinirole (which I found out was same class as the MIrapex I never took) and decided to take them for a few nights... No change, just made me feel awful... I should also point out that at this point in time the Trazadone wasnt keeping me asleep and my sleep started to deteriorate again. I told her about this and she said "Just take more trazadone.".... She also saw elevated b12 in my latest bloodwork and also had me do more bloodwork, this time for Hepatitis... She said as far a leg pain, to go give blood cause my red blood cell count was so high???

Seventh visit: My wife was getting sick and tired of all this so she came with me to my doctors appointment and lo and behold, after 13 months I was actually going to have an appointment with the Dcotor whose name is on the building of them primary care provider I see... He told me I didn't have hepatitis, I showed him the video of my legs and explained most of what I'm saying here, and he said "Oh, you have restless legs" and prescribed me Levadopa and sent me on my way within 5 min... Never had script filled.

The day before my 7th visit, I found a sleep Dr who was supposedly one of the BEST sleep doctors in central FL. The only problem was, she was so popular, it was going to be 7 MONTHS before I got in.... Well, I filled out my paperwork and gave it to the receptionist and I said "I will drop everything and come in if an appointment comes available."... Well, by some miracle they called me the NEXT MORNING and asked me to come in and bring my CPAP card....

Sleep Dr. Visit: She was so nice and listened to everything I was saying... She said the "jerks" I was having was because my settings were not correct on my CPAP and that the unnamed medical device company does not have my health at interest, only $$$. She also told me that the leg pain I was having was from the high hemocrit/hemoglobin count and that a higher pressure would solve this... This was 6 days ago. They adjusted the settings on my machine to a low of 10 and a high of 20 with a ramp starting at 6... She also prescribed me 300mg of Gabapentin for my leg pain/to calm my legs. (She was also offended they put me on Ropinirole and Levadopa and to give blood)... She made a comment about the Doctor I was seeing and told me "He's a shoot-from-the-hip doctor and rarely refers people to specialists".... Anyways, she said I did not have RLS and more likely a form of Periodic Leg Movement Disorder tied to apnea. My AHI went from 5-10 to 25+ for the first 3 days and I told her that it felt like I was being choked with air... She told me the choking feeling is me trying to get air and that even know my numbers were high, I am going down the right path and to keep using machine. I googled Gabapentin and it's effect of the respiratory system and asked her if the medication could be making my AHI high. She said possibly and put me on 100mg instead of 300... During the visit she also told me Trazadone is not a "good drug" and coincidentally I told a friend I was on it and she suggested I get off it ASAP cause of an experience her mom had with it. After reading horror stories on the internet I stopped use. My last 25mg dose was the day I went to the sleep Dr. So I've gone 5 nights without it. Also, when I went to bed without the Gabapentin/reduced dose, my AHI has gone back down to 6-10, but actual sleep quality was horrid.

I've also had limited sleep since late August and I feel like I'm starting to lose hope/go crazy. It was suggested that I go see a psychiatrist. I did that yesterday and after a long list of questions, he wrote me a prescription for .5mg of Lexapro for anxiety and said that should hopefully calm me down because I am having a lot of anxiety regarding my health... Particularly sleep. The script is being filled and I haven't picked it up or taken it yet.. It's gotten to the point when the sun goes down, I fear going to bed. I fear sleeping in my own room because the last few weeks have felt like torture. I was going to post a sleepyhead chart from last night but I figured it wouldn't do any good cause I was up about 5-7 times for various reasons, not to mention when I'm awake all I do is thrash around like a maniac... (My wife has slept in a separate room for months now) I also constantly move my legs while I'm awake or at my computer desk, watching TV,etc.

I dunno how much accurate information can be deciphered from sleepyhead if I'm just laying there awake with the mask on... If anyone would like me to post any data from any nights I will. I just figured I would wait to do it instead of posting a bunch of nights.

For the record I thought the psychiatrist was going to talk all this out with me, not throw a script at me then shoo me off for a month...

I am at a loss... Between the insomnia, the "jerks" and my anxiety I am a wreck. I feel like I have lost control of my life and that's why I'm here. I literally have thought to myself I would be better off dead than dealing with this...I'm not expecting a magic bullet or anything.. I just wanted to share and possibly get some insight. Like I said at the beginning, I realize that all this might go well beyond CPAP... I have tried everything. Yoga, stretching, hot baths before bed, all the meds they have given me, low fat diet, keto diet, meditation, having sex before bed, etc... Even abstaining from sex/orgasm... There is nothing that I wont try or advice I wont listen to. Dont know if I should go back on trazodone, take more of the Gabapentin (it makes me really drowsy) or what... I also want to mention that ever since my pressure has been increased I am swallowing a lot of air, belching throughout the night and have had the worst gas I've ever had in my life... I literally did not know I could pass that much gas. Also forgot to mention I have taken the burspirone sporadically cause the nurse practitioner told me to take them "as needed" but people I have talked to said that's not the way that works and I have to take them regularly. So I was taking them here and there when I was anxious but felt that it wasn't helping so I quit taking them altogether.

If I have left anything out or if there are questions I will answer anything in great detail.

Thank you so much for reading. Any help or words of encouragement appreciated.

[Julie]

Not sure what to say at this point, but have you looked hard at all your meds, side FX, etc for anything that would either keep you awake (even if dozey), or knock you so far out as to relax muscles, tissues too much (to the point where cpap is ineffective in keeping airway open), or whether or not meds cancel each other out in some respects... in other words a real serious look including, if possible, discussion with your doctors re stopping the meds for at least a few wks (they all seem to take so long to get out of your system) and then starting over trouble-shooting Cpap alone? Then if you choose to reintro. meds, do it one at a time, giving it lots of time to show problems, etc. so that you don't get confused about which is doing what when.

Also do a forum search on aerophagia (your gas problem - often lowering pressure by 1-2 cm will help).

Don't try to get info from software if you're awake because breathing patterns are diff. then and info won't be accurate anyhow.

And unless your psych. is a trained 'sleep' doctor, not sure how much they'd help... have you talked to neuros who are sleep trained?

[Greentree]

Hello Olive Garden Fiend,

Welcome to the forum. You have come to the right place to get some help with your cpap issues. Our regular greeter and welcomer, Zonker, is in the midst of a big move and may temporarily not be available to give you his wonderful greeting, so I thought I would just tell you hello. This is a great forum with many very helpful members. I am fairly new and not an expert, but there are many here. Don't give up and try and stay positive. This journey is often not a straight line for most of us. There are many frustrations along the way. However, it might help you to read the "Success Story" thread on the forum. Are you anywhere near a major university with a medical school? Or even if you aren't, it might be worth exploring traveling to one for an appointment with their Sleep Disorders Clinic. Be of good cheer. Help will be coming your way. We are a diverse group with differing life experiences but we all have the same goal....working with each other toward solving our sleep apnea issues.

Best wishes,
Greentree

[TropicalDiver]

I am sorry you are facing these challenges. What I am going to say may sound harsh -- please understand it is not intended to be. I know you are doing everything possible to solve the problem. And it will get better although it will take time and effort.

You need to find a single provider that you can work through to address your various issues. They may well refer you to other providers to rule out a particular issue (and that is a good thing) but it loops back to them. Most specialists look at things through their lens -- if it is "their problem" the leap in; otherwise you bounce to another provider.

I would start by trying to find a great primary care provider. You also need a great sleep doc -- great for your issues (and that might be the one you have -- or it might not. I would want one who does plenty of non-apnea stuff). Then you have to give them the chance to solve the problems. That means trying their ideas (which you have done) and looping back when things don't improve.

It also means not introducing a bunch of new variables without discussing them with your PCP. Not the time to change your diet to see if that works...

I am not a medical provider (in real life or on TV) but this is where I would start if I were: the beginning and assume nothing. First, I would try backing down on the medication. (Note: With many meds, it is important that you don't just stop -- some may need slow tapers). Second, a very complete physical. Complete metabolic, thyroid, and a ton more. Very good history. At the same time, I would start some cognitive behavioral therapy around both sleep and anxiety. I would likely want a repeat sleep study (in lab -- with video) -- and likely in lab titration. I would want to see a rheumatologist or neuro (they are hard to get in!) to try and cross off some of the more unusual causes. Then try things from there -- one or two at a time.

As a patient, I would focus a bit more on your complaints -- and make them as specific as possible. "I literally have thought to myself I would be better off dead than dealing with this", is pretty compelling.

Reading your post, a potential list could be:
a) Inability to sleep. This is driven in part by anxiety but also leg twitches and...perhaps other forms of insomnia
b) Pain in your legs -- and the leg movement (night AND day).
c) Has the elevated RBC, Hct, etc, been adequately explored.
d) Anxiety.

Best wishes

[zoocrewphoto]

You've gotten some god advice.

i would recommend putting together a binder. Print off all your test results and have a list of what you want to discuss when you go into a doctor. And I do agree that you probably need a new primary doctor.

I'm in a similar process right now with different issues. My last primary moved away, so I am waiting for my appointment with the new one. I have a two problems that have been bothering me, one for 2 years and one for many years. these two, I nobody seems to know what is causing them, and they seem reluctant to do any real tests. I also have a couple newer problems that I am trying to work on. So, I totally understand the frustration of waiting for appointments and getting bounced around.

For the cpap, tell us more about the masks and issues. People here can give you advice. There are guys with beards using full face masks. I'm not a guy, so I won't be the one to help you, but they are here. Also, if you think you were mostly asleep for a couple hours or more, post the graphs. Also, let us know what your current settings are, and what kind of problems you are having. Do you fall asleep and then wake up quickly? Do you not fall asleep at all? What do you think may be keeping you from falling asleep. The more you can tell us, the better advice we can give you. Sleep doctors may understand the apnea part of this, but unless they sleep with a cpap machine, they really don't understand the comfort part of this.

[kteague]

That's a lot to unpack, and a lot for you to go through. After reading through previous responses I see you've already got a lot of sound advice. Sounds like all of your providers have had near-misses with no one exhibiting a comprehensive knowledge of your conditions. I'll add some opinions from my perspective to consider. I'm not in a position at the moment to do a very detailed response. If needed, I can circle back later.

I have read on here that sleep apnea can cause increased red blood cells. Maybe someone else can chime in and say if CPAP treatment is expected to resolve that condition. I am not familiar with increased red blood cells causing PLMD, so can't weigh in on that. Wouldn't it be nice if that were true and CPAP treatment thus reduced your leg activity! So that remains to be seen. At any rate, effectively treating your sleep apnea is a given.

If you do have Periodic Limb Movement Disorder as one doctor suggested, several of the meds you've been prescribed are treatment options, but I am of the same mind as you, to proceed with meds with great caution. But one of your meds (Buspar) lists restlessness and sleep issues as side effects, so you may want to think twice on that. I think it would be wise at this point for you, if able, to find your baseline then methodically go from there. It is hard to have the patience to do that when you are miserable, but thowing a bunch of mud at the wall to see what might work can make results difficult to discern. Some treatments need some time to work, and you don't want to switch to the next thing too soon.

If you are able to get off all meds, here's what I would recommend. Have your doctor draw a ferritin level and also check your magnesium, vitamin D, and B vitamins - anything related to healthy nerve and muscle function. Get your specific ferritin results. Those with limb movement issues are recommended to keep their ferritin up around 100. A general result of "within normal limits" does not suffice for us. Resolve any deficiences found in testing.

Here's where I might diverge from others with PLMD. Because I have found success treating my limb movements with a TENS Unit, if you are able to test this theory before going on meds, at least you will have done due diligence on trying to avoid the meds. I'm not against meds when necessary and helpful, I just think they are prescribed prematurely and too casually and sometimes with pretty ugly consequences.

Let me know if you have any particular questions. Gotta run for now.

[Muse-Inc]

Wow, what a collection of issues! "elevated hemocrit/hemoglobin" is common for hoseheads who are untreated or inadequately treated; it normalizes with optimized treatment -- it's your body's attempt to provide more oxygen as a reaction to the drops in oxygen during apneic events (people living at high altitude have that too). If I were you, I'd start taking a good multiple and 5 oz V8 daily, just in case the leg jerks MIGHT be unbalanced/missing electrolytes. I'm pretty much anti-drugs unless there are NO other alternatives...sounds like they are throwing drugs at symptoms without understanding WHY you are experiencing each symptom in the first place or what the drug is designed to accomplish. Good luck finding resolution!