Hypersomnolence and my sleep apnea

[stacyrings]

First an introduction since this is my first post. I've been a member of this board for a bit but never posted. I'm a little nervous because I don't know a lot like it seems most of you all do. I don't know my pressure settings or other numbers I see thrown around. I do know my equipment and it's listed below. I was first diagnosed with sleep apnea back in 2003 and got my first machine then. Used it every night without fail. The first couple of weeks on it were great but after that I never felt rested again. I just kept on, thinking that was just how it was going to be. When I would see my ENT for other issues I would mention to her about not feeling rested and she wouldn't seem too concerned. I did have another sleep study about 6 months after that first one when I insisted that I was still tired during the day and not feeling like I did when I first started on the machine. That resulted in lowering the pressures a tad.

Fast forward to this past summer. I'm still using that same machine, still set to those pressures from back in 2003 but now my sleepiness is horrible. I fall asleep at work, I can't keep my eyes open, they close all on their own and it's hard to open them, sometimes I'm so sleepy that my entire body hurts, I have to take a short nap when I get home from work every night just to make it to bedtime. This sleepiness is painful and ruining my life so back to the ENT I go. Add to all that I get a headache that lasts more than 2 weeks with no relief. She does a CAT scan to make sure there isn't any problems and that is fine and she schedules me for a new sleep study. Because it had been so long since my last one, insurance made me do a full night without the machine to "prove" I had sleep apnea first. Oh boy that was a horrible night. Then a week later I went back for the second round using the machine. (I don't know if you all use a different term or not but that's how I refer to it IRL.) That's when I got the one I'm using now.

No change in my sleepiness at all. I'm working with my PCP and my psychiatrist on this now. They put me on Nuvigil. OMG, this is like a wonder drug, for the first 3 days, then nothing. I get no wakeful feeling from it anymore but I still get the speedy and fast heart beat. So I'm off it and now I'm on Adderall. This does nothing from the start. In between those two drugs I see a neurologist about all this. He sends me for a MRI and finds one lesion but isn't concerned. There are lots of reasons I don't like this doctor, too many to list out, so I seek out a second opinion. I finally get in to see one in November and go for an overnight study and then a nap study the next day. Oh and he too wasn't concerned with the lesion on my brain. I got the results of the study yesterday but I don't have all the numbers.

This has been and continues to be very frustrating to me. I started working from home in August because I didn't feel safe driving and also I could take a nap when I needed it and still work my 8 hours. Then my boss left and lots of changes at work and they wouldn't let me work from home but my doctor wouldn't let me drive. I was taken off work for a month in hopes that the Adderall would work but it didn't. My doctor couldn't keep me off work any more and I couldn't afford too as I had use all my time so now I'm back at work, back to falling asleep at my desk and looking like a zombie all day. A few months ago I also started having major leg pains and some would wake me in my sleep or keep me from falling asleep. Then I started having more of the same type of pain all over but it's worse in my legs. My new neuro prescribed Neurontin for it and it has help wonders but guess what, it makes me sleepy!

When I talked to the nurse yesterday about the results of my study, she said the diagnosis was hypersomnolence and periodic limb movement disorder. Okay, the old neuro gave me a diagnosis of hypersomnolence too and said to keep taking the Nuvigil even though it didn't work. (one of the reasons I didn't like him.) So now we all know that I have excessive sleepiness. What are we going to do about it??? Can this really be fixed by adjusting the pressures on my machine? I asked the nurse that and she said the doctor hoped it would. I know my new pressures will be 18/14. I just have no faith that I will ever be awake again. I already have depression, have had it going on 25 years now, but all this is really testing me and just how much I can take. My memory is shot, concentration is too. I have the best little girl that just turned 3 and I'm always to tired and sleepy to play. Is this the way it's always going to be?

I know I wrote out a novel but I felt like I needed to include as much information as possible. I hope someone can help me. Sorry if any of that is confusing. Sometimes my brain doesn't work like it use to.

[Julie]

Hi, this may seem pretty basic, but in case it's never come up... have you ever tried a full face mask? Or taping? Because if you're mouth breathing once asleep - unaware of it - you're losing all the good air that way and getting no therapy to speak of, but with a FF mask (I haven't asked about chin straps because they are quite inconsistent) you can breathe however you need to (especially if you have a cold) and still get treated.

[stacyrings]

I've never tried a full face mask because I feel pretty sure I'm not mouth breathing but I guess I could be. Wouldn't they know that from this last sleep study I did?

What is taping?

I've thought about getting a chin strap. The first set up I got came with one but didn't stay on my chin. I barely have a chin to speak of. LOL

[Julie]

Hi, they wouldn't necessarily tell you if you were mouth breathing or not... it's not something they're actually looking for and do not necessarily watch you while you're asleep, but watch the monitors that track results of the electrodes.... and chin straps don't always work well because they can't keep your lips closed, only your jaw and only to a certain extent.

Taping is about using certain types of tape (both medical and painters) on your lips overnight ... do a forum search for more information and threads about it... some people use it all the time, others just for a few days to see if it helps them get better sleep, and if so, they then look for full face masks of different types (cpap.com has loads to read up on, together with patient reviews).

[NotSleepingBeauty]

Wow. I am sorry to hear that you are having all these troubles. I am in a similar situation.

I was so sleepy and heavy eyed during the day that I would fall asleep at work and at red lights while driving. NOT GOOD. I have been to so many doctors. At the Rheumatologist (I have an elevated ANA, I think that's the term) he has been trying to put me on Nuvigil for like a year now, insurance won't cover it unless we can rule out sleep apnea. The Endocrinologist only found that my sugar was slightly high A1C of 7. My thyroid, adrenals, and everything else was fine. So I went for a sleep study. I had one back in 2009 and was prescribed an oral appliance that would push my lower jaw forward for mild sleep apnea. So I recently went for 2 sleep studies. The first with my appliance, the second with CPAP. When the doctor showed me the results I cried. They were pretty much exatly the same. I was hoping to get a diagnosis of apnea get a CPAP and feel instantly better. The sleep doctor said that my sleep pattern was better with CPAP so I have been using that for 2 weeks now. I also have an appointment with a neurologist on the 6th.

I don't feel a huge difference, but I don't feel such a strong desire to nap, and I have only had the heavy eyes once. I am waiting for the CPAP to stop working and to be in the same place you are in. It's like waiting for the roof to collapse on my head. Probably not great for getting good sleep either.

I also have been dealing with depression for 16 years now, and have also gained about 20 pounds since 2009. The biggest issue I have is that all the drugs I take for the depression either cause weight gain or sleepiness. I got some good advice from another sleep doctor when I went down to the sleep lab to have the CPAP ordered. She heard me crying like a baby and asked to talk to me.

First she told me she wanted me to sleep more. I was getting up at 6:30 to be at work by 8:30 and I never made it there before 9. I was getting up, fooling around looking at Facebook, Twitter. etc. So now I get up at 7 and I get here roughly the same time as when I was getting up at 6:30. Also if I am tired at like 9pm, I just go to bed.

Second she told me to cut back on some of the meds that I was taking, AND to change the time that I took others. As an example: I am taking Clonazepan. I was taking 10mg and I weaned myself down to 5mg, also I don't wait until 9pm to take it like I did. I take it as soon as I get home so it can relax me for sleep and it's not so strong in my system when I get up at 7am. You may want to talk to the doctor that prescribes your meds for depression and ask if changing the times you take them may help.

You may also want to check out a Rheumatologist to rule out autoimmune issues like Lupus, Mono, and Fibromyalgia. Actually with the pain you are getting, I would strongly suggest getting tested for Fibro. There are certain points on the body that are painful with it, check WebMd or someplace like it to find the symptoms. I'm not trying to scare you, but if you are like me just ANY diagnosis would lift a lot off my shoulders.

I wish I could help you more, I really do, because I have felt that exact same way. It's scary, depressing, and screws with your memory and concentration. Good Luck!

[stacyrings]

Thanks for the replies.

I've thought about fibro too and it seems that EDS and sleep apnea can go hand in hand with it. I have missed so much work and even though I'm covered under family medical leave for my EDS, my boss still gives me a hard time for missing work, I just don't want to take another day to see another doctor. KWIM? But I'll have to.

I have many many blood work ups, not sure what all they checked for but the only one that they said was off was my B12 was slightly low so I take a daily supplement for that. Thyroid, blood sugar, adrenals, all were fine I do know.

My PCP said something about the Epstein-Barr virus but said it was like I had it a long time ago? That's what causes mono, right? I don't ever remember having mono or if I did have it, I kept on going.

I know what you mean about getting any diagnosis. That would help but this hypersomnolence, my family doesn't believe in. My folks think I can just wake up, drink some coffee or make myself go. Yeah some days are better than others and I'm more awake but I am sleepy every single day.

For the tape, I'm going to try that! I'm getting a new mask now and my DME was just going to send me one to try that he thought I'd like because the sleep center didn't write down the one I liked. So he said I could send it back if I didn't like it. If the tape works, I'll try a FF mask.

Good luck NotSleepingBeauty. I hope you get an answer soon too.

[NotSleepingBeauty]

My mother has Epstein Barr. It can go into a remission like state, and then flare up again. Many doctors don't even give it much thought. Perhaps it's Chronic Fatigue Syndrome, which is a diagnosis of elimination. When every thing else has been ruled out.

I hope we both get answers soon.

[avi123]

[quote="stacyrings"]
When I talked to the nurse yesterday about the results of my study, she said the diagnosis was hypersomnolence and periodic limb movement disorder. Okay, the old neuro gave me a diagnosis of hypersomnolence too and said to keep taking the Nuvigil even though it didn't work. quote]






Reply,

It could be idiopatic hypersomnolence

http://www.hypersomnolence.org/

One thing they should have done in the sleep clinic is measure your Flow Limitation which could be the cause of it.

Please glance at my recent post about it (before you zip your eye shut):


viewtopic.php?f=1&t=72573&p=667434#p667434

[LoneStar]

Have you had your thyroid checked? Not just the TSH, but a complete thyroid panel including T3, T4, free T3/4, etc.? And have your doctors checked you for adrenal gland fatigue with a saliva cortisol test? How are your vitamin D3 levels? If there is a functional medicine specialist in your area, you should consider seeing them.

I say all this because after being on CPAP for two+ years with 100% compliance, I was getting tireder and sleepier with major brain fog. My AHI was usually under two. A friend recommended that I see a functional medicine doctor after my PCP did a lot of tests that came back "normal" and dismissed me. Lo and behold I have adrenal gland fatigue and a host of other imbalances. I am on my way to more energy and better health, but I had to find the right doctor to start that journey.

Lisa

[Bugdude]

My thoughts are with such a high pressure, I have to wonder if you're getting mouth leakage with your nasal mask. I know you say you believe you don't, but it's easy to not notice or realise you're mouth is farting at night.

Try getting a loan of a FF mask: you've got nothing to lose.

[Pugsy]

Welcome to the forum?

Do you have the software to use with your new machine to make sure that at least on paper that things are at least optimal as far as your therapy goes? Leak line and numbers, if elevated, might indicate mouth breathing or other leaks great enough to impact therapy.
Using the software you can spot any areas of therapy which might need improvement. If all the data looks good on paper then we do have to look at other possible contributing factors to not feeling the good numbers like sleep fragmentation, hours of sleep, pain, med and other health issues which have already been mentioned.

I had a problem with sleep fragmentation due to pain. I had great numbers on my software reports but I knew I woke up many, many times during the night due to pain. Anything that messes with sleep will mess with how we feel the next day. So have you used the software to make sure the data looks good on paper and nothing needs work?

[kteague]

A few months ago I also started having major leg pains and some would wake me in my sleep or keep me from falling asleep. Then I started having more of the same type of pain all over but it's worse in my legs. My new neuro prescribed Neurontin for it and it has help wonders but guess what, it makes me sleepy!

When I talked to the nurse yesterday about the results of my study, she said the diagnosis was hypersomnolence and periodic limb movement disorder.

What is being done about your periodic limb movement disorder? Have they done iron studies, magnesium level - - - anything???? If your PLMD is anything like what I've suffered, you have my sympathy. My guess is treating your limb movements along with therapeutic cpap treatment would give you a sizeable portion of your life back.

[Guest]

hi Lonestar, by the way what do you take for thyroid? I had a TSH of 0.74 which seems a little hyperthyroid so I'm trying to take more iodine in my diet now from kelp and natural sources.
Is adrenal fatigue caused by adrenal damage or steroids? I have had low cortisol

[Jay Aitchsee]

Stacy, I think you've been given some good advice in the foregoing posts. My advice would be to start with the basics. Fix the things you can fix first. If you do indeed have OSA, wear your XPAP and get that under control. Monitor your AI, either through software or from the machine. Learn how control your machine. Be wary of meds. Many, even those prescribed for sleep have a negative effect on the quality of sleep, Clonazepan for one. Try to reduce the number of drugs as much as possible and know the effects those that you take might have on sleep. Know that depression and lack of quality sleep seem to be related. Treating one, can sometimes help the other, but, again, be mindful of the drugs. Many anti-depressants have a detrimental effect on sleep. Work on your sleep hygiene. Don't take naps, wind down before bedtime, have the proper sleeping environment, watch caffeine especially after noon, exercise, etc.
Lastly, but most importantly, have a full blood work up, including a metabolic panel, thyroid panel, iron panel, magnesium, Vitamin D3, Vitamin B12 and if any of these are abnormal, fix them first along with your OSA.
Sleep is a hugely complex function. Not well understood by many. Sleep effects many functions of the body and many functions of the body effect it. I think the only way to successfully manage it is to break it down into basic functions and tackle them one at a time. Research these items thoroughly so that you become the expert and can take an active part in your treatment. Try to use only credible sources for your research; for example, published studies, clinical trials, etc. A relentless Google search on any topic will usually turn these up.

Good luck to you,
Jay

[LoneStar]

Hi Guest (sickwithapnea17),

My thyroid is fine thankfully, so I don't need to take anything for it. I am under the care of a doctor who specializes in functional medicine. She ran the whole panel of thyroid test correctly to determine this. If you are self-diagnosing and self-medicating, this is not a good idea; you really need to be under a doctor's care for this. High or low thyroid levels can cause all kinds of problems with your health. I recommend that you read up on it at this website: http://www.stopthethyroidmadness.com/, it also has information on adrenal dysfunction.

And low blood cortisol levels do not mean that you have adrenal fatigue. It needs to be diagnosed with a 24-hour saliva cortisol test. Think of taking a picture (blood cortisol level) or a 24/7 video (saliva cortisol test). You have to have data for what the adrenal gland is doing over a 24-hour period before you can diagnose adrenal gland fatigue. A low blood cortisol level doesn't really tell you anything regarding adrenal fatigue as it only tests for what the blood cortisol level is at that moment in time.

The cause of adrenal fatigue is unknown. But it is often undiagnosed and is part of other problems. Here's another website with good information. I am not recommending their products, but they have very good information: http://www.womentowomen.com/.

Lisa