Alpha-delta Sleep

[Rachel]

Hello friends,

Several months ago I had a sleep study and was diagnosed with Alpha-Delta Sleep (also known as alpha intrusions). When I sleep I have too much alpha wave activity, which leads to non-restorative sleelp. Basically, I'll be sleeping, but my brain waves are going as if I'm awake, yet I'm asleep.

Has anyone else here been diagnosed with this? If so, have you found any sleep medications that improve your sleep, but don't interfere with your dysautonomia?

I have tried: otc sleep aids, Klonopin, Seroquel, Sonata, Wellbutrin, Melatonin, and Trazadone. All of those meds help me to sleep, but the side effects are too much for me come morning. It takes too long for otc sleep aids and Klonopin to wear off; they leave me extra weak until the afternoon. Seroquel - well, that was the absolute worst I've ever tried! It left me so grogged out and feeling like I wasn't even me. I only took one dose at night, slept well, and come morning (and afternoon and evening) I was so out of it that I said, "Never again!" Sonata doesn't last long enough, but it does help if I wake up at 3 or 4 in the morning and can't get back to sleep. My sleep specialist said that Wellbutrin is the best med for alpha-delta sleep, but again, the side effects were too much for me. Wellbutrin is supposed to be taken during the day, but for 2 hours after taking the med I was oh-so-sleepy. Melatonin is what has worked best for me so far, but it's still not great.

Trazadone is what we've been trying most recently. It helped me to get a better quality sleep (more than any previous medication), but after a while it made me feel very weak. I would wake up in the morning feeling like I had been doing squats and leg lifts all night long. My legs were weak, shaky, and felt like they would soon give out. We're going to try just a 1/4 tab of Trazadone to see if it helps enough, but doesn't give the extreme side effects. After this my doctor doesn't know what else to try. She said that traditional sleeping pills won't be good/won't work for me (I can't remember why). She said I'll probably just have to make some tough choices about which is the "lesser evil" to deal with - not enough sleep, enough sleep and sleepy side effects during the day, or good sleep and weakness during the day.

Provigil was beneficial to me (and in combination with Melatonin it worked pretty well), but I've run out of the sample packs, and my insurance won't cover the med. So we're going to do another sleep study and MSLT to prove that I need it. Hopefully they'll agree. We'll see!

If anyone has any tips about what to do with Alpha-Delta Sleep, I'd love to hear them.

Thanks,

Rachel

[Sophia3]

Rachel

When still walking around with CFS dx and PRE ANS problem and TTT, a very nice sleep doc studied me. I had the severe alpha intrusion and lack of refreshing sleep as well. He also could NOT figure out my insomnia which I now know is based on POTS.

As you know, there is no "Cure" for alpha intrusion but some meds may help. When i saw my doc in 1994, he said "elavil" was supposed to fix things but alas, it does not OR if it helps, leaves folks so HUNG OVER and groggy it does not help them function. also it's horrible for Orthostatic Intolerance.

I have found nothing to help but sometimes melatonin helps me sleep along with the klonopin.

The HUGE DEAL when I was seeing my sleep doc was the government study with liquid GHB. it helped several pts alpha-delta sleep IMPROVE and one pt of his with FM for 17 years, crippled by the pain, threw away her cane after 2 weeks, was washing her car and even HORSEBACK RIDING.

Needless to say, I had very high hopes for the GHB study (funded by the government at the time) and tried it for months. Alas, it did not help and for those it helped, was VERY EXPENSIVE. It was free during the study but those that continued it after the study had to pay. Now way back then, it was a salty liquid compounded by a pharmacist and the dose was not always EXACT.

SOme sleep docs around the country are now using this drug in limited studies and my doc was one of the ones to get PERMISSION to use it since the "media" had turned GHB into a horrible date rape drug that could put people in coma's. COMPLETE BALDERDASH.

You can google GHB and sleep disorders. I used to have an article on this drug years ago. You may want to read up on it and ask your sleep doctor if he has heard about it. The doc I used years ago near Cincinnati was Martin Scharf, Phd. He was on CBS evening news about this medication.

ODDLY ENOUGH, it helped and improve the lives of NARCOLEPSY TREMENDOUSLY. The stories on the news were compelling. A med to help Narcolepsy and FM and even insomnia? whle it sounds too good to be true, we ALL RESPOND DIFFERENTLY.

But GHB is the only thing I have heard in recent years that "CAN HELP IMPROVE ALPHA INTRUSION SLEE".

But like everything else in this illness, Mileage may vary but it's worth a TRY.

[Sophia3]

Rachel

A quick google search, I found this. Let me have my second cup of coffee and look around. I have no papers on the study to copy for you but should be stuff galore on the Internet!

http://www.immunesupport.com/library/showarticle.cfm/id/4850

[Rachel]

Thanks for the info Sophia. The GHB sounds interesting, but it isn't something I could afford if my insurance won't cover it. Since they're refusing to cover Provigil, it is highly doubtful they'd cover GHB!

Do you know if alpha intrusions ever go away on their own? Or once people have it, does it stay "forever"?

I'll keep trying the 1/4 tab of Trazadone for now. If that doesn't work then I think I'll have to go back to Melatonin with Sonata as needed.

Rachel

[Sophia3]

Rachel

Alpha intrusion does not go away. I just googled and realized Xyrem is now the GHB in pharmaceutical form being used in studies but this link is a few years old.

http://www.geocities.com/joanne_eglash/fibro.htm

It mentions Martin Scharf, PHd who FIRST discovered GHB helping narcolepsy pts and narc pts that also had FM had their pain go away. So I don't know if there are any current studies going on. You may want to contact sleep clinics in your area or even try Tri State Sleep Clinic website in Cincinnati Ohio to see if Dr. Scharf knows of any trials as for now, Xyrem is mainly for Narcolepsy but also has some 'off label' uses.

Good luck!

[ajw4790]

Rachel,

This is interesting, although I unfortunately don't have any words of wisdom, I had never heard of this before. So, there is always something to learn! It is very unfortunate that you have this problem, but at least they found out what was going on, and are trying to figure something out.

Anyways, do you know a good place to find more info. on it, and what makes drs. suspect it etc? I know that for as long as I can remember I tend to have very unrefreshing sleep, and tend wake up out of it, with pain, more tired then went I went to bed etc. I have reported some of this to drs, but they always try to say it is b/c of anxiety (not turning my brain off to sleep- thoughts racing etc.) and not sleeping, or they thought maybe seizures at night etc. Now they are also considering restless legs syndrome as part of the cause.

Good Luck! Sorry I couldn't be of help!

Thanks!!!

[Sophia3]

not to butt in but if your doc thinks you have restless legs or any sleep disorder, a NIGHT of sleep in the sleep clinic is in order.

You can also be dx ONLY by a sleep clinic for the alpha intrusion problem.

You can google this issue but there are alas, no easy fixes. I have had this alpha intrusion forever and it stinks and adds to the horrible fatigue and pain junk. Also since I had mild sleep apnea, we all NOW KNOW ANS issues can cause "central sleep apnea" considered a neurological deal.

But if you have restless legs, thats sometimes easily remedied for some with diet and elimination of things and exercise. Also meds including the new one TOUTED on tv or old fashioned Klonopin among others.

A good SLEEP DOC can make all the difference in a proper diagnosis. Good luck.

[Rachel]

AJW - I would see if you can find a sleep specialist to work with you. You'll need a sleep study to diagnose alpha-delta sleep or any other sleep disorder. During a sleep study you also have little "things" on your legs that keep track of leg movements indicating restless leg syndrome. Once your doctor knows specifically what is going on during sleep, he can prescribe meds to help your specific sleep disorder. If simple fixes like exercise, good diet, otc sleeping pill, white noise, etc. don't help you to sleep better, then it is time for a sleep study.

I have greatly appreciated my sleep specialist and the help she's given me. No, we haven't improved my sleep much, but it is nice to know what I have. That in and of itself is often a great help just because you then know the real reason behind the problem, and how to attack the specific problem. It is also nice to have a doctor agree with you that yes, you do have a sleep disorder. You aren't anxious, lazy, etc.

I hope you can find the help and answers you need.

Sophia - thanks for the link. I will check that out.

Rachel

[yogini]

Rachel,

I didn't know about the distinction between alpha and delta sleep until I read your post. But I have been using a great sleep CD called Delta Sleep System for the past year or two. From the title, I guess it's supposed to help with delta sleep! It helps me fall asleep at least sometimes (which is great as I prefer a CD to taking sleep meds). It was only $10, so you may want to check it out.

-Rita

[Roselover]

Rachel,

This is very interesting and a timely discussion.

I've been way overdo for a sleep study and keep putting it off. I finally decided to do it this fall - and then Vanderbilt University invited me back for quite a few studies - one of which is a Sleep Study!!

It'll be interesting to see what they find. They are studying sleep issues for POTS patients.

But I will still have to come home and find a doc that will help me deal with whatever they find. I'm curious... is your sleep specialist a Pulmonologist or Neurologist or other? Those are the two choices I have here for a sleep center and I've been leaning towards the Neurology - thinking they might respond to and understand ANS problems... but my PCP really likes the Pulmonologist so I don't know who to see.

I had/have FM too until I got my sleep doing a little better. I started with 1/2 and Ambien on nights I couldn't sleep. That turned into a whole and I sleep so much better I wanted something every night - but my insurance won't let me have it. So right now I alternate Ambien and Clonazepam (Klonopin). I sleep better on the second - but I never feel rested in the morning... in fact I feel worse when I awake!

When I went to Vanderbilt last year... one of the study drugs they tried was melatonin. It made me so sleepy... I slept all afternoon. But it made my POTS worse the whole day. Of course - that is just me... but I thought it was interesting. So I don't take melatonin.

I've thought about trying the Valerian/Lemon Balm... but I don't want to play around with too many meds - even non-prescription, before I really know what's happening in my sleep.

I'll let you know what I learn when I get back! Let me know your opinion on the Pulmonologist vs Neuroligist Sleep specialist.

~Melanie

[Rachel]

Hi Melanie,

My sleep specialist is a Pulmonologist. If I had thought about it beforehand I would have probably chosen a neurologist, but I'm glad I didn't think about it. I really like my sleep specialist. She is very educated, very smart, and takes all aspects of my health into consideration. She didn't know about POTS before she met me, but she did research and quickly caught up. I brought in medical records, POTS info, and a symptom list. Being a sleep specialist she was very familiar with CFS and fibromyalgia, so she had no problem believing in another invisible illness. Anyway...all that to say, I don't know which doctor would be best. I have had a great experience with my Pulmonologist, but a Neurologist could be a good choice too. Much of it might just depend on the individual doctor, his willingness to consider dysautonomia in everything, etc. I hope you can find a good sleep specialist and get some answers.

It's interesting that Vanderbilt is doing sleep studies on POTS patients. Maybe I should have sent that research participant application in.... Oh well.

What is Valerian/Lemon Balm? I haven't heard of that.

I will be interested to hear what you learn after your trip to Vandy. I hope that all goes well for you.

Rachel

[ajw4790]

Thanks for ya'lls help!!! I did not know much about all this before, I think it is worth looking into.

[Sunfish]

melanie et al -

i'm not rachel (though am sure you could figure that out on your own ) but while my sleep issues (apnea) aren't the same as those primarily being discussed on this thread i thought i'd still chime in briefly re: my experience with sleep docs.

in short i agree that the individual doc matters much more than whether s/he is a neurologist or pulmonologist. so while it's obviously your decision to make i'd probably lean toward a doc that has been recommended to you rather than a neuro that you know nothing about. anyone you see should be certified as a sleep doc as well, though obviously that's just the starting point & not the only issue at hand.

my original sleep doc (after my autonomic neuro sent me for the sleep study) was a neurologist. i only saw him a few times but had fairly neutral experiences with him. and the clinic/ center was great so all it was a positive. all in all he was fine & dealt fine with treating my apnea, though i was a fairly easy patient in that regard (as opposed to in many other regards!) diagnosing/ treating my apnea was such a positive for me that, other than working with the tech to find a mask that didn't give me a rash, i didn't provide much of a challenge. he "got" my autonomic issues to some degree but also made some comments on occassion that indicated his level of understanding in that regard was pretty limited; i'm used to letting those sorts of things roll of my back though when they're not damaging to the issue at hand, which they weren't. but i can't say he'd be someone i'd go to or recommend if creativity and/or out-of-the-box thinking were required.

when i moved from where my first doc i actually didn't seek out a new doc as, in relation to my other health issues, my apnea seemed to be managed well and my PCP had no problems writing a script for a new mask, etc. if i'd had problems and/or in several years time (as re-evaluation is recommend periodically) i would have found a doc then; i'm generally a big advocate of finding/ having a connection with a doc before problems arise but once diagnosed properly (which took a LONG time) my sleep issues have been fairly boring.

during my last hospital stay, however, i ended up getting hooked up with a new sleep doc as - and this is what you may find interesting - in my case they were one in the same as the critical care docs (who were pulmonologists.) i never had reason to be aware of this previously but it ends up that many critical care specialists (the docs that generally the attendings for ICU patients) are also pulmonologists; because, as you know, some pulmonologists are also sleep docs, it thus follows that some sleep docs are also critical care docs. the reason i'm going on & on about this is that critical care medicine very often deals with autonomic issues. obviously it's in an acute context rather than that of a chronic illness, but i still found that it meant most of the pulmonary/ critical care/ sleep docs i encoutered were pretty in the know about my autonomic issues, meds i was on, etc. there was one exception who couldn't seem to get past the fact that there was something he couldn't fix (my chronic issues) but the others i encountered (and the one i'm following up with, both for sleep & other lung issues) seem to be fairly high up on the learning curve as far as autonomic issues are concerned.

we learned during the stay that my apnea was no longer being controlled entirely with my current treatment i'll be heading for another sleep study soon myself...fun fun. they're going to have a hard time competing with the nice locale of my first two studies & they already gave me a new machine/ settings (based on oxygen levels) which is making a difference for me already so i could do without another study but ah well.

i rambled much more than intended, primarily to say that i wouldn't get too hung up on the specialty of the doc beyond him/ her being a sleep doc. i think it's great that - while i know it's not an easy feat on many levels - you're going to be able to participate in the studies at vanderbilt. i think i've mentioned it before but i participated in several sleep-related studies for them that were solely questionnaire-based just over a year ago & had extensive conversation with one of the docs on the phone about the inpatient sleep studies that they were, at the time, trying to get started. i'm not eligible to participate for various reasons but think it's great that they're doing the studies.

i will look forward to hearing about your experience & of course hope that it will provide info that is helpful for you moving forward as well.

melissa

[Poohbear]

Rachel,

I haven't read all the other replies so I'm sorry if I'm repeating something someone else has already said.

I have also been diagnosed with this and have been intolerant to various meds for different reasons. Honestly, the thing that has helped me the most is listening to my body. I am more of a night owl naturally (I always have been). I found that if I stay up until midnight-ish I tend to get more consolidated sleep and deeper sleep. I still don't get enough hours a night and I"m still tired all the time but this has helped. It is important to get up at the same time every day.

Basically you are making yourself stay up until you CANNOT stay up any longer and then when you go to bed you are most likely to sleep a bit longer in the deeper stages of sleep.

I also find that if I eat higher in carbs in the evening/night I do not sleep as well and I also find I sleep much better if I do not eat anything 4 or 5 hours before going to bed (I have gastroparesis though so my food tends to sit in my stomach all night anyway).

Good luck with getting approval for the meds you need.

[Rachel]

Poohbear,

That's an interesting observation about being a night owl and listening to your body.... My sleep has slowly been getting worse over the years, but it really got bad around late fall/early winter of last year. That's when we had to move in with my parents. They go to bed early (by 9pm usually) and so we've tried to adjust our schedules so that we don't keep them awake at night. When we were in our own house I don't think we ever went to sleep before 11pm, and usually not until midnight. I would then sleep until 10 the next morning. Now, however, we try to be quiet by 9pm and in bed by 10pm so that our schedules are a little closer together. I wonder if some of my difficulty in sleeping could be due to the change in bed time. It will be interesting to see what happens with my sleep when we move again and are in our own place.

I agree that getting up at the same time every day is helpful. It is so hard when I've had to get up early for a doctors appointment, etc. 10am is my preference for waking up.

I haven't noticed a difference in foods before bed and one that would make my sleep less restful, but I'll have to start paying attention to that.

Thanks so much for the help!

Rachel

[kmpower]

You might also look into neurofeedback. Brainwave training helps with a number of aberrant states resulting from brain trauma, developmental problems, residual physiologic states after illness, and more.

Part of a sleep study is the EEG, but running the data through certain programs on a qEEG (such as Loreta) can help isolate anomalies and suggest training plans. Bursts of alpha are also problematic when trying to concentrate. Alpha should normally make its appearance in the posterior brain with your eyes closed, but there are other times when it is harnessed for healing. Maybe your body is trying to do something.

There are lots of NF sites, some more scientific, others more clinical.

Best wishes.

OLL

[morgan617]

I've had really poor unrestful sleep forever. When I got diagnosed with fibro, I was given sinequan (same class as elavil) and ended up having to stop secondary to really bad tachycardia.

I used to wake up 20-30 times a night when I worked. My pcp says no reason to do a study, because what would we do about it? I'm thinking...well CPAP if indicated, but don't push stuff anymore.

My son has had two sleep studies and just started CPAP, he has no REM sleep at all and sleep apnea. So no meds, just the machine. He and my hubs (narcolepsy) were seen by pulmonologists, who speicalize in sleep disorders. We have been really pleased with them. I don't think it matters what they specialize in, as long as they also specialize in sleep studies.....morgan