I was diagnosed with Alpha Wave Intrusion along with Sleep Apnea in 2007. I have had Chronic Fatigue Syndrome since 1987, with exhaustion, all-over body pain, mental fogginess, and unrefreshing sleep. The doctor at the sleep disorders center tried me on Xyrem. My insurance company paid for the Xyrem, so I tried it. For about two months I awoke refreshed and felt fantastic; then the Xyrem became less and less effective, until it did not work at all. During a productive night's sleep, growth hormone is being made. The sleep doctor told me that the only thing I could do would be to take growth hormone, which is really expensive, or do twenty minutes of hard exercise a day to make my own growth hormone. Of course, with Chronic Fatigue Syndrome, I have post-exertional fatigue and body pain, so I am not able to take that advice. Maybe I'll try the TV advice given above. Thanks.
I have suffered from Alpha Intrusion for nearly 13 years. Mine initially started and was diagnosed after I was in a Coma and Total Organ Shutdown for just over 2 months due to an allergic reaction to Dilantin and Depakote called "Stephen's Johnson Syndrome". I have always had trouble sleeping...even since birth, but after my Coma, everything got worse. I go for routine Sleep Studies every 6 months and every Sleep Study indicates that my Alpha Intrusion is getting worse. On top of the Alpha Intrusion, I have Obstructive Sleep Apnea. My Neurologist just recently (about 2 months ago) discovered that my Uvula is deviated to the left and that the entire left side of my Soft Palate and Upper Throat are paralyzed. I had an MRI done to try to figure out why I have this Deviation and Paralyzation, but it came up inconclusive. I've had a very difficult time swallowing since I was a kid, but it has gotten much worse recently. I'm scheduled for a Swallow Study next month and am looking forward to figuring all that out.
I have tried nearly EVERY medication under the sun for my Insomnia and Alpha Intrusion, including medications NOT indicated for this use. The only medication I have yet to try is Xyrem because I have not heard of it before now. I DO know however, that a LOT of "sleeping" medications can actually have the OPPOSITE INTENDED EFFECT. For instance, one of the medications that I currently have and use on RARE occasions, is Trazadone. I VERY rarely use it because it causes me to only get about 1 hour of sleep per 24 after the first dose which DOES allow me to get a "full night's sleep". With people who have brains like ours, medications designed to help us FALL and STAY asleep can quite often cause us to have Insomnia and further WORSEN our already existing Alpha Intrusion. If anyone is a fan of the show "Grey's Anatomy", there is a partial explanation for this on Season 9 Episode 22. There HAVE been several studies where Coma Victims regain consciousness and other things lost due to the coma, but as of right now, there is no SIGNIFICANT FDA approved "proof" that this actually works. Still, there are people out there like me who can genuinely say that some sleeping medications may actually KEEP you from sleeping.
Someone mentioned (sekhmet611 on 4/30/2011) trying to sleep with a movie on. This is pretty much the ONLY way that I can sleep. I HAVE to have light that "moves" (the changing of scenes and changes within scenes) and constant noise in order for my brain to understand that it is time to relax and sleep. I keep the volume at a level just a NOTCH above where I otherwise wouldn't be able to hear it and I put the movie on repeat. It took my husband a while to get used to it, but it DOES work for me for the most part. Recently (the past 3 weeks) I have only been able to sleep for about 2 hours at a time with a MINIMUM of 8 hours before trying to fall asleep again. This is WITH my taking Valium (30mg), Zanaflex (24mg), Seroquel (25mg), Trazadone (200mg), a couple different pain medications and a few other medications. This combination of high dose medications would knock most people out for a week and cause SERIOUS CNS-Depression, but because my Brain and Body are how they are, I still am not able to get the sleep I so desperately need.
I totally feel ALL of your pains and can relate. I wish that I had more to say, something that could actually help, but at this point, I'm pretty much at as much a loss as you all. I will check back after I get the results for my upcoming Sleep Study and Swallow Study and let you all know how they went and if there is anything that I can add, I certainly will. Please don't hesitate to contact me for support or to chat when you can't sleep. I'm almost always awake and almost always on the computer! Take Care my fellow sufferers, and happy dreaming!
I just found this thread. Is it still active? I am 60 years Alpha Intrusion sufferer. Torturous disability. Have a lot of experience and a lot to share. And always looking to learn as well.
I have alpha wave intrusion and apnea, but also a thyroid disorder. Alpha wave intrusion may have a thyroid link.
I've had insomnia as long as I can remember (since 4-5?). Up later than everyone by a long shot. I always assumed it was PTSD (even as a child). My dreams are so vivid ALL the time. I wake up feeling like I was awake all night watching a movie. A horror movie. 88% of my dreams are horrifying. Discovered ambien when I was 22 and saw a psychiatrist for the first time. It was a life changer (for a while). The nightmares were gone for a solid 3 years. (it is losing its potency sadly). As time has moved on I have had to take more and more meds. I may or may not have Bipolar II. Perhaps severe depression. My long term psychiatrists are torn. My memory has always been awful. Still is and getting worse. In med school my sleep got the worst. I was eventually on ambien 10mg, clonazepam 2mg a day, trazadone 150 mg, rozeram 8mg, and norco for pain, and a few hundred mg of thorazine at night. I’ve basically tried the gammit of the rest of psych drugs. Those are the ones that worked best. Ones I left med school I’ve been tapering off klonopin, insurance stopped paying for ambien and rozeram at the same time. Over the counter melatonin is useless. Ah, and god-awful RLS. I totally get the “I take so many meds that would make a normal person keel over and give them central apnea.”
Anyway, I went to a sleep doc a few months ago and got a sleep study. Got the results today. Intrusive alpha waves. Also I keep all my muscle tone during rem sleep. Evidently the normal thing is to lose all tone. Also have mild sleep apnea. Way more on my back. I was shocked by the sleep apnea thing. We had learned about it so much in med school and the patient was never a 29 year old female who weighed 120 lbs. Evidently sleep apnea does not discriminate. It was always presented as most commonly a middle aged male slightly-moderately overweight. It was not central sleep apnea.
Either way. I’ve heard alpha intrusive waves for the first time today. He doesn’t know the cause. Says it can be associated with Wellbutrin, fluoxetine and narcotics. All of which I take. Doc says it won’t change treatment so I brushed it off but looked it up tonight. Hello fellow insomniacs. I was prompted because I saw someone mention the bad memory. Really resonated with me.
I personally have to have everything completely black and white noise to sleep. I could never fall asleep with a tv on. My eyelids don't close at night. (Creeps my hubby out haha). So I throw a soft shirt over my eyes and it always falls off by morning. Sleep masks make it so I can't breath through the nose.
I've also done the standard sleep hygiene things that I'm sure all of you have exhausted. The only one's that actually help is to take a super hot shower every night before bed, and go to bed in a freezing cold house with lots of blankets. Makes it easier to fall asleep by 500%.
One thing that was weird was that I evidently got so hot during the sleep study that the electrodes stopped recording. Which is odd. I am 97 degrees Fareinheit all day every day and live in sweaters.
Its so nice to know I am not alone in this. I have had sleep problems my whole life (34 years) and I was diagnosed with alpha wave intrusions about 8 years ago. The only medicaion I have tried with doctors was trezadone. My memory is horrible and I feel like a walking zombie except on the rare occasion that I actually wake up feeling refreshed. I will try the tv thing.
I just was diagnosed yesterday and the drs gave me 10MG Elavil, as well as mirapex, for restless leg syndrome, I feel like a new person after day 1!!!!!
I have had alpha wave intrusion and sleep apnea when I sleep on my back for many years. I always wondered why it felt like I had slept soundly but I could not get up in the morning because I was so exhausted! I also have allergies to many many things and have been getting allergy shots and taking allergy meds year round every day. I also had a deviated septum corrected and the openings to my sinuses enlarged about 10 years ago. That has definitely helped me get fewer (than 3-4 per year) sinus infections. I've been taking 150 mg of Trazodone every night, but have recently decreased to 125 because sometimes 150 knocked me out for too long. I, too, have always fallen asleep to talk radio or tv. It's like my brain needs something (boring) to be directed to or it races in a thousand different directions. I feel a lot less tired since starting the Trazodone, but I still feel sleepiness a lot and can fall asleep if I stop moving and doing things, usually within 5 minutes or less. I have a hard time focusing my brain to do work that takes concentration also. I also started taking Ativan for severe anxiety, which made it almost impossible for me to be tense or worry when I first started taking it a couple of years ago, but it is not that powerful for me any more. Also take Wellbutrin and Zoloft. So plenty of meds and definite improvement in symptoms since finding out about Alpha Wave Intrusion after my sleep study. My sleep dr. explained that for me, my brain acts like most people's brain does when they are at rest, not sleeping, so the brain never decreases its activity to allow sleep.
I've just stumbled onto this site. Wow! People like me. What a thing this is. I have felt alone for a long time now with this. I walk around like a zombie unable to focus. It's like my brain isn't awake. Kinda like a sensory overload or something. I even went to the Mayo Cliinic to find out what was wrong. They did a study and said I have alpha wave intrusion. That's how I got here. Your comment stood out to me because I have issues with my sinuses. I've had an operation to fix a deviated septum and to roto-rooter out the sinuses. Horrible experience. Man any help at this point is appreciated. The Mayo clinic down played my problem and suggested hypnotics. The doctor there obviously doesn't suffer from this. I "sleep" all night and wake up more tired than when I went to bed. What causes this and how to treat it. What effects on my health. I feel like I'm dying
Wow! That explains why when I fall asleep in front of the tv I feel that I've slept much better than without it--gotta be the reason. I was just telling someone about his two days ago! I said that an hour (asleep) in front of the tv is more restorative/restful than several hours in bed. Thanks for this info!
I'm being seen for Fibromyalgia this week or the next; I have high hopes that I may procure the Xyrem RX. I'll try to update once I test its efficacy in my case.
I was diagnosed with Alpha Wave Intrusions several years ago. I have been taking clonazepam (half pill - .25mg I think). It has helped me for the most part without feeling hazy. I do wake up frequently in the mornings, but am getting at least 4-6 hours sleep. I do have periods where I'm up every hour, but it's not enough to make me want to increase my dosage. When I ask my doctor if there has been any news on this disorder, he tells me no. I try to look it up myself every now and then. I have not heard of the other medications listed, so I'll look into those. Does anyone have any articles or websites that are useful for our problem?
I have had problems with alpha wave intrusion and sleep paralysis for years. A couple of years ago, my doctor put me on a VERY low dose (10 mg) of the antidepressant nortriptyline, not for my sleep problems, but to help ease the pain of psoriatic arthritis. Once I was diagnosed with alpha wave intrusion, she bumped me up to 25 mg every night. This is a low enough dose that it hasn't really had any side effects (other than the first couple of weeks, I had HORRIBLE dry mouth, which subsided), but it has helped me SIGNIFICANTLY. Most doctors other than maybe a psychiatrist will not think of trying nortriptyline because it's very old and rarely prescribed anymore, but if you are having this disorder, I highly recommend asking your dr about it!
I'm glad to see this forum's stood the test of time! I feel the frustration of everyone who carries this insidious ailment. It's almost been 10 years now since the on-start of my persistent sleeping problems and subsequent DX of Alpha Intrusion.
My sub-par stats were:
*Sleep Efficiency- 72%
*Periodic Limb Movements- 27/hr (mostly unassociated with arousal)
*Arousal Index- 16/hr
I'm 28 years old and I've spent a significant portion of my early adult years searching for a resolution to my sleep troubles. To those of you in a smiliar search, I'd especially encourage you to read into Xyrem (Sodium Oxybate). The case studies and testimonials are very encouraging. Also, the tricyclic Amitriptyline is commonly used to treat Alpha Wave Intrusion. In addition, there are some interesting conclusions being made regarding Upper Air Resistance Syndrome and how its effect on a person's sleep is similar to that of sleep apnea minus the apneas. (This syndrome affects those with thickened sinus tissue / chronic allergies)
Feel free to comment & inquire----> I'm happy to contribute any knowledge I've garnered since the Beginning Of It All =]
I too have alpha wave intrusion. I am so tired all the time. I have had 2 studies and both showed 50 awakenings per hour and zero deep sleep. When I try sleep medications, I sleep 18 to 20 hours, even when halved! I work full time and just keep trying to push through the week. Anyone find anything that works?
Trazedone really messed me up. :-/ I was on it back in 2001 and tried it again last year (since our bodies do change over time). It made me groggy and sick, with no positive influence,
Also, there is a med called Neurontin that is technically an anti-convulsant, but it's shown to help people with Alpha Wave Intrusion also, this girl included. :)
I have Alpha Wave Intrusion also. I've been through the works. Meds. Light box. Pretty much anything you can imagine. What my neurologist ended up suggesting goes against what many doctors would say. They usually will tell you that any light or noise is BAD for people with sleep disorders. But with Alpha Wave Intrusion your brain actually NEEDS something to focus on to relax and allow you to enter into REM. So every night, I put on a movie, low volume and dark lighting. Not enough to distract me from falling asleep, but enough that there's a tiny bit of auditory and visual stimulation that my mind settles down. Long story short, I still have terrible insomnia, but WHEN I sleep, I manage to get a bit of rest at least.
Of course, I'm an odd duck, so what works for me is usually not what works for other people and vice versa. But worth a shot, I think, if you are still struggling.
I have Alpah Wave Intrusion for 2 years and have suffered terribly. My dr. just recently talked me into trying Trezadone. He suggested that I take it to a pharmacy that would break it down into 5mg capsules, because the lowest dosage of 50 mg was just too much for me.
I have been taking the lower dosage coupled with 10 mg of Melatonin and it seems to be working pretty good. There doesn't seem to much to do about this disorder and it really is tough.
I have been diagnosed with alpha wave intrustion since 2002. I have used a number of things to help me. The medication that I use the most is trazodone. It is an anti depressent with a sedative quality. Many people use this medication for other sleep issues. I have found that I am less tired in the daytime and that I am able to sleep better, and I am able to fall asleep sooner. It has also helped with the depression that goes with not being able to sleep enough or with good quatilty. Anybody have any other good things to say about it? I would love to know about others expreinces. Kim F.
Please email me to discuss sleep issues. I have struggle horribly for over 9 years. I have been to hell with this. I've made some progress, but still struggle horribly. Would love to know how you are doing now, and share with you what has worked (somewhat) for me.
I found your post while googling, I hope you dont mind me messaging you. I also have alpha wave intrusion although not as bad as yourself. Have you had any luck with treating this? Meditation helps me a bit but its far from a cure.
Thanks
I really feel for you. Several years of inadequate sleep has had to take a toll on you, and I would imagine your health. I tolerated my sleep issues too long and it cost me dearly. I waited on insurance, then waited for a "good" time, then waited till I felt more like being bothered. Now I have nothing but time as I am unable to work and I'm barely functional. Sleep is so necessary to life and health. If necessary for you to wait on Medicare, then it is what it is, But the cost of waiting may be higher. It would be a shame to keep suffering if you may not have to. Please, if you feel yourself slipping, don't wait any longer. Hopefully you'll have something treatable. I've heard alpha wave intrusion can be stubborn.
I had a sleep study several years ago. The results pointed to numerous awakenings throughout the night with only 43 minutes out of 360 asleep. No REM. This study was done in my home not a clinical environment. My current sleep doc seems unphased by the results and wants to do another. I will reach Medicare in 2 1/2 years and am trying to postpone the huge expense prior to that time.
Based on my sleep fragility and various other issues dealing with my sleep, the Alpha Wave thing has been suggested. I, myself, am more of less convinced this is my problem.