67 replies to this topic

[munky]

Great ideas about moving furniture and bedding colors, you two!

Right now, I can't really move the furniture, but I wonder if switching some of it out for different stuff/different colors would be a good idea. My bedroom is black, white, gray, and some yellow, but mostly black and gray.

I love these ideas so much! Any excuse to try to redecorate is okay with me.

Glad to help!

About the multivitamins: some people are sensitive to certain B vitamins and they may cause sleep disruptions/too much energy, though I don't know if all doctors and pharmacists agree about it. I figure it's just not good to risk it just because I covet good sleep. If you haven't had any problems then keep doing what you're doing!

I know I can't take anything with B6 in it, as long as I'm taking the multivitamin. Several years ago, I was having more trouble than usual getting any sleep because I kept waking up every hour or so, so I was taking melatonin every day--a previous sleep doctor had recommended it as an alternative to sedatives, because I hate the side effects of the sedatives. Anyway, I wasn't as careful as I usually am in purchasing my melatonin, and after a couple of days, my legs started to twitch. I figured it was effects of the sleep deprivation and kept taking the melatonin. The next day, my arms were twitching, too. The day after that, my head started twitching as well, and there was NO WAY I was going to get any sleep. Finally took a look at the melatonin I'd purchased and discovered it also contained B6. A bit of research revealed that a B6 overdose was likely the cause of the twitching. Stopped taking it, and within a day or two the twitching had stopped. Bought another bottle of melatonin, and made absolutely sure that time that it had no B6 or any other "active ingredients" than melatonin ... and never had that problem again! But I honestly never thought about the fact that my multivitamin contains B6. While I'm not taking anything ELSE that contains B6 and, therefore, not suffering the "overdose" twitching effect, it might still be affecting my sleep.

I just never even thought about it. I think I'll do a little research and see if there's anything out there about taking them the same time as I take the Nuvigil. If I can't find anything, I'll wait 'til my followup with the neurologist before I change it.

Thank you, dormir!

[Megssosleepy]

I have also heard only to take them in the morn due to some of the energizing effects of some Vit and minerals. There are some supplements that should be taken around bedtime (if you dont take Xyrem) I dont have the book with me, but I will try to look it up and get back to you.

[munky]

That would be awesome. The only things I'm taking right now are a multivitamin, a fiber supplement (supposed to be on a high-fiber diet, and just can't manage to reach that level), and a Vitamin D supplement, but if you can find the book and let me know, that would be awesome. I'd also love to know the name of the book!

[dormir]

Did you ever get a chance to find that book? I'm a legal drug dealer (what pharmacists and pharmacy technicians call themselves affectionately) so I'm super interested!

I haven't heard back from the hospital yet, but the billing department sent me a bill for $4150 USD today. I have no insurance. I'm kind of freaking out, but will try to see if they can give me financial assistance.

[munky]

I'm looking forward to it, myself, and I'm not even a legal drug dealer!

I did stop taking most of my vitamins before bed. I now take them with dinner, when I wake up. The one exception is the calcium supplement the doctor just put me on. Have to take that twice a day, so I take one with dinner, when I wake up, and one with my before-bed snack/lunch, which is usually about an hour before bedtime. I haven't noticed much of a change in my sleep, but there's no reason to change the timing back. And just because I haven't noticed a change doesn't mean there hasn't been one. I've never been much good at judging how well I'm sleeping, anyway!

[dormir]

It turns out the doctor has been trying to contact me, but I think he has the wrong number. The nurse called me to tell me after I left a voicemail about the results yesterday. She won't give me the results over the phone. She gave me another number to call to talk to the doctor, but it sounds like a general voicemail. I left a short message there with two different phone numbers and I'm hoping he will call soon. Yikes!

munky:

Maybe you aren't sensitive to multivitamins and that's okay! I just suggested it because some people are, plus it seems like some doctors try to find every excuse that a person isn't sleeping well instead of treating it.

[dormir]

I still haven't had a return phone call.     I'm know I'm being an anxious drama queen, but it is hard for me to wait.

 

I'm going to the hospital on Monday to apply for financial assistance and I'm thinking about dropping off my sleep journal, medication list, and sleep habits list for the doctor in the sleep study wing.  I'm pretty sure that I can't get in a quick visit with the doctor then so maybe dropping off that stuff would be good?  Maybe not...I don't know!

 

I'm probably going to call the nurse and let her know I will be at the hospital for something unrelated and maybe I will ask if that is okay if I leave that stuff for him.  The hospital is far so I want to make my time there count as much as possible.

[munky]

I just got the bill from the neurologist with the sleep study on it. $425 for the PSG and $500 for the MSLT. My insurance paid $23. WTF?! Thankfully, they aren't charging me the full remaining amount. They took most of that off as "adjustments". So, with the two office visits and two tests, I'm only getting billed $500.

 

Never thought I'd say "only $500", but seeing what it would've been otherwise ... ugh.

[DeathRabbit]

Wow, might be worth it to contest that

[dormir]

I have bad news.

 

The sleep study was inconclusive.  

 

I didn't get a full follow up with the doctor today, but he was nice enough to talk with me for about 7 minutes about what was going on.

 

I woke up a lot and fell asleep for 3 of 5 naps, but in the naps, never got to REM.

 

 

 

 

I choked up and told him that my entire life I have been called crazy, lazy, and/or demon possessed and he said I am not demon possessed.    Thank you, I know.  

 

But, he said that people without narcolepsy can still have sleep paralysis, hypnogogic hallucinations, and vivid, interrupted dreaming/sleep.

 

I told him, I just want peaceful sleep.  I'm tired of dreaming and waking up from them.  I want restful, peaceful sleep.  I want to feel alert when I wake up.  I don't want to fall asleep in class or on trains or when I need to be taking care of my kids.

 

He said he can "make the dreaming stop," but didn't elaborate.

 

He said he wants me to go in for follow up anyway and wants me to try this watch that will monitor exposure to daylight, sleeping, etc.  The name of the watch was weird.  I think it started with an A.  Does anyone know what this watch might be called?  

[DeathRabbit]

Hmm, at this point, it might be worth it to look elsewhere if you had no REM at all. Have you had a full blood work up done recently? There are plenty of hormone problems and vitamin deficiencies that can cause crushing fatigue. Additionally, it might be good to get tested for a few infectious diseases as well. Persistant mononucleosis, lyme disease, toxoplasmosis can all have latent effects of fatigue, as well as other neurological signs. Finally, if none of that pans out, I would make an appointment with a neurologist to rule out MS and the like. Take heart. If you don't have N, maybe you've got something that's actually curable!!!

[dormir]

I am going to ask my doctor about another sleep study.  The big problem is not having health insurance, though.  

 

I know I have PCOS and the last time I had a TSH, it was slightly under the hypothyroid zone, but my regular doctor didn't want me to start anything.  The last time my iron was checked, it was normal.

 

I haven't had anything related to vitamins, though.  I do take a MVI regularly, but that doesn't necessarily mean I don't have a deficiency.  I will ask my doctor next time if she thinks that woul dbe a good idea.

 

I had a mono test recently and it was negative.  

 

I have never been tested for Lyme disease or toxoplasmosis, though.  Those are some good ideas.

 

I wonder if I could get referred to a neurologist through this county hospital.  I'm going to ask my doctor next time.  

 

I'm trying to take heart!    I just want to stop dreaming and feeling tired all the time, though.  The dreams...the dreams.

[munky]

I'm trying to take heart!    I just want to stop dreaming and feeling tired all the time, though.  The dreams...the dreams.

 

I can't think of anything to add to what DeathRabbit said. I know more tests are very discouraging, especially with no health insurance! But you'll get there. And you've always got shoulders to lean on here while you're working through it all.

[dormir]

To have your support in this time is amazing.  I'm feeling sad, mad, and confused.  I wanted resolution.  Clear answers.  I'm sure I will move through it, but today.

 

Today is not a good day...or maybe it is, like DeathRabbit said.  I don't have neurological symptoms of MS or parasitic diseases, but you never know, like he said.

 

I found the watch the doctor was talking about.  It is call an actigraphy watch/just actigraphy.  I don't know how I feel about this, but I guess I'm willing to try anything.  I'm going to hold him to his semi-promise of making the dreams go away, though.  Nothing would make me happier.  It just feels he is looking elsewhere, to like circadian rhythm disorders or something like that.

[SleepyRaffie]

It sounds like more testing is advisable.  There are a lot of possibilities besides narcolepsy.  However, lack of SOREMs on the MSLT does not negate the possibility of narcolepsy.  I had no SOREMs on mine and due to my sleep latency and cataplexy received the narcolepsy diagnosis.  The sleep study was the last test I did though so everything else had been ruled out.  I wish you the best in your persuit of answers.

[DeathRabbit]

I'd like to be tested for a few more infectious diseases tbh, just because I have a recurring high white count. However, I'm not likely to be taken seriously if I request it outright. Perhaps I could lead my GP into doing it by playing dumb and just asking leading questions.

[dormir]

It sounds like more testing is advisable.  There are a lot of possibilities besides narcolepsy.  However, lack of SOREMs on the MSLT does not negate the possibility of narcolepsy.  I had no SOREMs on mine and due to my sleep latency and cataplexy received the narcolepsy diagnosis.  The sleep study was the last test I did though so everything else had been ruled out.  I wish you the best in your persuit of answers.

 

 

How many naps did you sleep?  How was your PSG?  

The cataplexy doesn't haven't very often, but I don't think he believed me when I brought it up a few days ago.  I mentioned it in my original consultation because he asked about it, but didn't connect all of the times it has happened until recently.  

He didn't completely write off narcolepsy, but he definitely seems like a textbook narcolepsy type of doctor, though I still hold out some hope he might not be.  He was pretty confident in the initial consultation it was probably narcolepsy, so we'll see this.  
 

 

 

I'd like to be tested for a few more infectious diseases tbh, just because I have a recurring high white count. However, I'm not likely to be taken seriously if I request it outright. Perhaps I could lead my GP into doing it by playing dumb and just asking leading questions.

I might try this, too.  My next regular doctor appointment is early February so not far off.  

[SleepyRaffie]

How many naps did you sleep?  How was your PSG?  

 

I fell asleep 4/4 naps.  I slept seven hours on the PSG and had mildly fragmented sleep.  There really wasn't anything too out of the ordinary on it.  The reason I had started the process to find out what was wrong was that I was wobbling and falling.  Prior to the sleep study I had every blood test you can imagine, two MRIs, an EEG and an EKG.

[DeathRabbit]

I've never had an EEG (outside of PSG that is to say) or an EKG. Noone has ever really actually tried to seriously diagnose me. It just feels more like I took a hop, skip, and a jump to N. I believe I have N, but could it be secondary to something? Who can say? Certainly not my doctors, cuz they didn't check.

[dormir]

Sleepy:

 

you went through a lot to get diagnosed.  I hope your life is making more sense these days.  How are medications working for you?

 

 

DeathRabbit:

 

Do you want to get other opinions or are you comfortable with the diagnosis?