neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.


I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

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  1. Well, at least he didn’t wave goodbye to you while you were waiting for him. :/ I hope he’ll leave you in good hands, but meanwhile, I think his/your theory makes sense. From all I’ve come across, a sleep study on an EDSer (and I believe that’s what is the root cause) will be a waste–it won’t show true apnea but will show all those awakenings. There are some specialists that dig deeper and know there’s more than apnea out there, but they’re hard to find apparently. I would never bother with a study out here, but I think you should cross it off the list since you can sleep w/o meds, at least. Anyway, CPAPs are used for some EDSers and not for apnea–I believe it’s the upper airway resistance.

    I still don’t get the sweating–well, I do in terms of autonomic dysfunction. With me, it only happens when it’s cold. The temp dropped like 20 degrees today and I woke up drenched in sweat again!

    I hope you get an answer. I’ve had horrible sleep since the EDS hit (actually no sleep or 30 mins/night pre-meds) and had trouble falling asleep since 13, but then it was normal sleep unlike now. And MM screams in my face all night–what’s up with that? I have no idea why she’s doing that! I think I’m pulling 5 interrupted hrs due to her loud meows right in my ear. I’m installing a snooze button on her head ASAP. 🙂

    • Yeah, I hear you on the kitty alarm clock. Had to lock the kitties out of the bedroom last night. This is after Mr. Patient got scratched on the face and I nearly emptied a spray bottle onto the cats for fighting over my head last night. They say pets calm you, right?! 😉

      But that’s new behavior and she’s not a kitten who is just discovering the wonders of your bedtime, so that’s pretty strange that she’s started doing this. I wonder if your blood pressure or breathing is tanking when you sleep and maybe MM is just trying to let you know? Like she’s your little sentinel? A friend’s dog used to wake her up when her husband was hypoglycemic. They do have a knack for knowing when things are not ok with their people.

      I did have one sleep study, good lord like 4 years ago now, and what you describe is exactly what it showed. I think there were over 200 awakenings in one short study, “consistent with upper airway resistance syndrome”, said the report. Makes sense an EDSer would have that. Everything else about my body is “floppy” so why not my soft palate or pharynx. I can make those awesome velar and pharyngeal sounds that you don’t get in English.

      I can’t do sleeping meds. They slow the gut down even more and that is not ok. Medical marijuana was just legalized in my state, I’ve considered giving it a shot in the future as a possible sleep aid. But for now, it’s just sleep hygiene and when I can tolerate it, melatonin.

  2. Oh, that’s so weird about the dog and the hypoglycemia. I haven’t even been sweating aside from the other night so I’m not sure and no one else to ask. I can’t believe you have a spray bottle! Haha! MM hates sprays of any kind due to her misdiagnosis of ring worm a decade ago and lots of sprays and baths (oh, so terrible), so that might work as a snooze button unless she flies off the bed, which would be bad as we have a high bed (air bed on top of crappy, motel bed) and she can’t right herself with 3 legs and just lands on the floor with a huge thud. She used to roll around on her back and roll right off the bed the last time we stayed here. :/ She’d lose it if I stuck her in the bathroom, as the bedroom really isn’t a bedroom, of course, and no door. I think she’d wake the neighbors in that scenario.

    Maybe MM is trying to save my life and I’m just oblivious and talking about spraying her with water (and I have a bottle in the closet right now)! I swear she’s just bored or something, but you never know. It could be retaliation for the meds, as she only meowed for minute or so last night as it wasn’t a med day. Oh, when I get under the covers (no arms/legs so safe), she starts kissing my nose and rubbing her head on mine and doing her trill meow until I turn around. I tend to do that to her so is she mimicking me? Mocking me? She also hangs off the bed and gives me the poor cat stare (serious sad face) for 20 minutes until I give her a teeny piece of beef kabob on take-out day, so I have to keep assuring her that she’ll get steak if she waits. I seriously need a cat whisperer here. Thoughts? My thoughts are that maybe she just wants grilled beef vs. venison and pea hypoallergenic kibble (barf) at odd hours or I’ve ruined her circadian rhythm and she thinks it’s wakey-wakey time with the blackout blinds shut. Well, I just wrote a post about my cat.

    Anyway, I’m really surprised that a sleep doc picked up the upper airway resistance syndrome for you. Way better docs out there I tell you. I saw a video about the whole sleep issue and the problem with interpreting sleep studies was mentioned. Anyway, yes–things can collapse due to being floppy with EDS. I tend to think I have more of an ANS problem as I just stopped sleeping one day and then the circadian rhythm thing, but if you can sleep with a lovely CPAP, maybe it’s worth it. I never had issues with Ambien as far as side-effects, but no REM sleep as usual, and no other sleep med worked and they had bad side effects like Lunesta and that newer one that’s “non-addictive.” I swear the best sleep was the week of the concussion and I was dreaming like crazy. Ahhhhhh. I should hit my head every week…

    Btw, you can walk the hallways and blaze up for free over here if need be. Ha! It stinks so much and I’d have to pass on that due to my sicca issues. OK, this comment was way too long to match my day that was way too long/wonky brain. :/

  3. Omg, what if I’m a snorer now and MM gets irritated, hence screaming in my face. No! I’ll have to tape a tennis ball onto my achy back. My mother snores. I had to stay in a motel with her the night before my CXL surgery and was going insane and got no sleep. Maybe it is the EDS as she’s on Trazadone now to sleep, which about killed me in ’02 or so (she’ll say everyone snores, but thus far she denies snoring). I don’t think women generally snore, but just a presumption. I totally need a video of myself sleeping to figure this out. Well, looks like I’ll totally be alone forever now…
    ~The Snorer

    • oh I definitely snore. My sister and I shared a room for most of my young childhood and I was told in no uncertain terms that I snored. Various men have told me this too. Aw, how sweet. Look at my lovely wife/girlfriend sleeping like a little wood sawing angel!

      • Lol! I hope Mr. Patient can sleep–especially if you get the CPAP. Well, you can get him some earplugs if need be.

        I’ve slept alone for a long time, minus MM, but no one ever told me I snored. Now I’m not sure that’s the issue as I slept around 7.5 hrs last night to my knowledge, but it was shallow and I woke up feeling like garbage per usual. So, I reset the alarm 10 times to stay in bed with my achy body, which just makes me feel worse, and then MM started screaming at me. (???)

        I think I’m a dead weight, which makes the cloud-like airbed hard and she doesn’t like having to sleep on a brick so when she’s had enough of sharing, it’s time for me to go. 🙂 I seriously keep it so deflated at times that when she sleeps in the middle of the bed, you can’t see her because she just sinks in. Cat in a sinkhole. What a life… You know, that’s one of the first things I read about when researching EDS: that people often need different types of beds like airbeds, pillow beds, etc. And there I was with an airbed and the fibro crowd just loved beds and chairs. Ugh! Anyway, I found that very interesting and my brother says his back hurts less when he camps and sleeps on his airbed.

        So, I think MM, who never leaves the bed, has a sharing problem. For years, I used to sleep on a big heating pad for my neck/shoulders and she’d slowly nudge me off the pillow in my sleep and I’d wake up flat on the bed and see her on top of the pillow, sleeping on the damn heating pad. :/ She also used to just sleep on my down pillow non-stop (pre-airbed days) and I’m actually allergic to her, so I spent $40 or something so she could have her OWN down pillow but no, it wasn’t good enough because it wasn’t worn in like mine! She lost her sense of smell ions ago, so it’s not the smell thing. So, I’m typing with her down pillow + heating pad behind my back. At least she got over the pillow fetish. 🙂

      • Oh god, my sister’s cat is like that. Has her own bed pillow and all, and still goes for the human’s pillow. Princess kitties!

        The geneticist who diagnosed me with EDS mentioned beds, unfortunately we had rather recently bought a new one so we weren’t gonna go buy another. I’ve got mine elevated at the head, that helps with the heartburn at least. Some. Not a ton. I’ll look into it more next time I’m bed shopping.

  4. Your bed is probably fine actually. I think my head is below my body, so you wouldn’t want a crappy airbed and 2 people can never sleep on them. 🙂 With me, I have the horrid, chronic, myofasical pain and the airbed puts less pressure on my body I presume. I really need a waterbed!!! I tried to sleep on the bed in here when my airbed deflated the 2nd time and I woke up with level 10 muscle pain and had Charley horses in my legs all night. I wish I could sleep on any old bed like I used to–and those beds in Mexico are like bricks–but I can’t. I supposedly have a better, pillow top bed in storage that I got 3 years before moving here, but I still think the airbed feels better. However, it seems my body has really fallen apart over the last few years, so I suspect sleeping with zero support for nearly 4 years is catching up. So sucky. I’m getting sooooo tired of EDS and 13 years of unrelenting, 24/7 pain. I wish they’d find new, non-opiate pain meds that actually work and don’t make me sick so that I can get a bit of a break.

    Oh, not a peep from MM again last night, but tonight is medication time so we shall see…

    • Oh I know what you mean about the air beds. We had one that would sloooowly deflate and in the AM you’d be on the floor. And sleeping on an air bed with Mr. Patient is out of the question.

      I wish there were other options for pain management too. You’d think there would be…but it’s still largely opiates. 😦 I just can’t take them. They cause so many problems for me that I sometimes will suffer with pretty high levels of pain rather than take them. Worst was post-op, hysterectomy. That was hard to get through, took the opiates and ended up in AGONY, syncope on the toilet, the whole nine yards. This is why I avoid them now.

      • I know! What’s weird is they don’t do anything for my pain, either. It’s not humane to live with my 7+ pain level non-stop. I get so sick from them that I’ve refused the Rx with 2 surgeries and am so scared I’ll need a HUGE surgery like you had and have no options–and it was really bad with the surgeries I had sans pain meds. :/ Of course, before the EDS hit, opiates were fine, as were GAs. I had my tonsils out at 21 and didn’t get sick from the GA, took Vicodin every 4 hrs around the clock for 2 weeks as that surgery just kills you and I was forewarned by my ENT. Aside from the pain and not being able to get out of bed, it was a breeze and I’m so glad I got rid of those nasty things. I don’t get how the EDS just hit and then my ANS went wild if I had EDS my whole life.

      • Yeah, for a drug lightweight like me, I sure needed a hell of a lot of pain med immediately post op for the hysterectomy. And I recall a lap before where the vicodin (dan?) was not at all helpful. Actually, I’ve been like this since I was a kid. At least since I had my wisdom teeth out at 20. I remember being so happy when I could take motrin since that worked way better than the percocet for the pain. 4 impacted wisdom teeth = a lot of digging and a lot of pain. Plus I got a dry socket infection. Percocet, I felt whacked out and still in pain. Motrin actually took the pain down some. My favorite pain killer is an NSAID, Toradol. Too bad it totally destroys stomachs and you can’t take it for more than a few days.

      • Hmmm. Maybe you always had the issue that I developed when the EDS hit, but I haven’t tried opiates for surgical pain post-EDS due to the nightmare with them when a doc forced my to try them for the EDS pain (former fibro pain) and had the typical anticholinergic side effects (x 1000) and then nearly got a bowel obstruction. In general, NSAIDS and Tylenol do nothing for me, but the one thing that got rid of my tension headaches from EDS and took a slight edge off my myofascial pain was Anacin (aspirin + caffeine). I think that’s how I somehow managed to get through those part-time jobs in the 2000s, even if I was still dying, but my GI issues came back and then I found out I had a stomach full of ulcers and was told to never take aspirin/NSAIDs again. I still have to pop an Anacin if the headaches get bad enough and then I get the burn in my gut and know I can’t do that for another month. Argh, so sucky! I even got that from a topical NSAID called Voltaren gel.

        I had all my wisdom teeth for 5 years or so but then my dentist said they’d all need root canals so she sent me to an oral surgeon as the roots were really fixed to the bone and she’d have trouble pulling them. I think I was 20 and I remember my dad had to stop at that co-op I mentioned to pick up the med–probably Vicodin–and no issue there either. I want to know what the hell happened to my drug processing system! It’s like once the EDS hit, every drug either doesn’t work or makes me so sick and I honestly didn’t have that issue before–my teeth even numbed! I think I need to figure this out because while there aren’t many women in my family, no one gets to keep their uterus past 60 and that huge surgery with my EDS issues is scaring me to no end. :/

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