Trouble with Alpha Wave Intrusions

[stevotdo]

I have recently been diagnosed with Alpha Wave intrusions after being bounced from doctor to doctor for 9 years. I have been diagnosed with everything under the sun from Laziness (I kid you not) to Schizophrenia (due to hallucinations when drifting off to sleep). My chief Complaints over the years have remained the same. EDS, Sleep drunkeness, Hypnogic Hallucinations, and Difficulty Awakening. I am shocked that never once did any of my doctors think I needed a sleep study ( It took me months of demanding to finally get one)

So, Alpha Intrusions, That's what it's been all these years. The thing that has forced me to stop working. But then there is the problem. I went to a sleep doc after my psg and mslt and he talked with me about the alpha delta sleep. The only meds he is willing to try me on is neurontin and Trazadone. If there is anything I have learned from being wrongly treated for psychiatric illnesses is that I am extremely sensitive to these kinds of medications.

So I started on Neurontin. It horribly increased my EDS and Sleep Drunkiness. I tried to get in touch with the doctor but the keep having me talk to his nurse practitioner. She kept going on and on about how when the medicine starts working and I'm actually getting efficient sleep that my body will crave more. I tend to think this is bull. Especially since not a week earlier when I was put on it they warned me about increased tiredness(as a side effect) and the fact that I would not notice any improvements for a month or more.

So I had it out with the Nurse practitioner this morning. Probably said a few things I shouldn't have. She also informed me that the side effects I was experiencing was because I read the list of possible side effects before I started taking the medicine. That's right, she told me no one should read the information that comes with the medicine because then you will have every side effect listed. I told her no, I just like to know what I was getting myself into and you guys are the ones that informed of the side effects when I had my office visit.

Then she told me that they would not be able to help me. Why? because I had undesired effects from the very first medicine you ever tried me on? She went on to explain to me that medicines would not help me at all and I needed to get good sleep habits and Practice meditation and aromatherapy before bed. I then told her I have been doing that for the past year and it did not help and that's why I came to you. She said I needed to try it for a few more years. HAha. Then I spoke a few obscenities and hung up ( I know that was not the best thing to do but I was not getting through to this woman).

Sorry this is taking so long..lol. It's already in the works for me to see a new sleep doctor. I think possibly my problems lie with the Nurse practitioner and not the doc. But I know he will stand behind what she says.

So who all has alpha intrusions and no other illness (CFS, Fibromyalgia, etc.) I have always been healthy other than this with no depression or anything. This all started when I was a healthy teenager and there where no illnesses or pscholigical problems. And what has worked for you. I really want my doc to start me on xyrem but he just about scolded me like a child for mentioning the name..lol

Sorry once again for it being such a long rant

[stevotdo]

Well, my actual doctor called me then. Tried to stick up for the Nurse Practitioner the best he could. He eventually gave up and agreed that she would no longer have anything to do with my care. I said that's how it should of been from the beginning since I never met the lady and she knows nothing about me personally. I told him I understood that he was a busy guy but all I was needing was a question answered about my medication. Should of been easy enough, he answered it in about 15 seconds as opposed to the NP time of 10 minutes..lol I'm glad that's settled. The last thing I needed was to be within grasp of a treatment and it be ruined by this gal.

I'm still interested in hearing from others about their treatment for the disorder.

[stevotdo]

Looks like i'm getting a new sleep doctor. I finally got enough courage to tell him I couldn't stand the side effects of gabapentin. He then proceeded to tell me he could no longer help me. Explained that there were no other medicines he could try me on. Well that solves that I guess.

[sham]

Been there. I'm switching doctors despite having a very helpful one because of her nurse and busy schedule. It's impossible to get an appointment with her, half get cancelled, then I get told to just call for medication adjustments. Calls result in only speaking to her nurse and not her directly. The clinic will not change that policy or inform her when I'm currently calling. She never gets around to calling me back. Only her nurse does. The nurse fails to convey anything accurately and half the time tries to tell me to just keep taking whatever I currently have even if it's not working. For the 3rd time I got told to come pick up a prescription only to find it's the exact same thing I called and said wasn't working and I have plenty left of.

In my attempt to find other doctors I got told lots of times they can't help and I've taken everything out there. I can fill a notebook page with all I've taken and there are still more meds out there. There are several tricyclics, the antipsychotics (I was on seroquel), neurontin (currently taking with other things), benzos(not a good road to go down), and then random things iike xyrem which are near impossible to get your hands on and best saved for last. Benzos will reduce the sleep you need and increase the problems you are having. Pregabalin and gabepentin have been shown to increase it. You could try the other but it's supposedly stronger so it may only make things worse but since it's not the same thing there is a chance you won't have the same side effects. The antipsychotics can help when nothing else does but the side effect rate is high and potentially severe. After years of taking it seroquel tried to kill me. Even a chip of the lowest dose pill now raises my resting pulse to 160bpm. I spent 12hours in the ER before they figured out that was the problem.

The point is there are a ton of options you can discuss with a doctor and meds you can try. No meds are not a good long term solution and they will not actually cure anything but I'm also getting real tired of all the people who think improving sleep hygiene is going to magically fix my sleeping problems. If I'm on meds these things could improve my sleep by hours but if I'm not taking anything I might as well not do it because it won't get me so much as 5mins more of useful sleep. Doctors will not believe me though so every new doctor or nurse I have to go through the sleep hygiene and relaxation routine. Sometimes I get reevaluated by a psychiatrist yet again. Occasionally they remain convinced that depression and lack of sleep hygiene are the entire cause. I go find another doctor then because no attempt to convince them is going to help.

[stevotdo]

Thanks for the reply. I'm glad i'm not the only one having problems. I would have to agree with you on the whole sleep hygiene thing. It's the same crap they tried pushing on me. What they fail to realize is that when the alpha intrusions started interfering with my life, my sleep hygiene was perfectly fine. 8 hours of sleep, waking up in the morning around 7 for school, hell, I didn;t even have a tv in my room to distract my sleep. Even now I try to stick to that routine. No black magic or voodoo is going to help my sleep hygiene. I've tried that for the last 9 years.

I think my problem with doctors now is i'm unwilling to believe every bit of crap they try to push. When I didn't know what was wrong I had no problem believing everything they said, and they had no problem with me. Now that I know what is wrong, I want to be a part of the solution. They seem to have a problem with anyone questioning what they are doing. They want to be left alone to play god but what they don't realize is we tend to know our bodies more then they do and we have the right to be informed about medications and their side effects, and what other treatments might be available.

[angel08]

When you had your study did they find sleep apnea? What is EDS? I was told that some patients can have AWI alone, & others have it occurring simultaneously as a result of the OSA (Obstructive sleep apnea).Also, do they give you meds during the day so you can fuction or are you fighting to stay awake? My situation is I suffer both from AWI & OSA and it is so bad that it has caused me to be chronically dizzy and occasionally have bad vertigo episodes. At one point I was unable to drive for 2 yrs.& still have to access whether that will be a wise decision. Through further testing they found which was a VER (visual eye response I think) that my AWI also occurs during the day while I am awake. Which-in most cases indicates narcolepsy, but I tested @ 1+yr came back neg. I am working w/ two good docs-my regular neuro opthomologist & also a neurologist/sleep specialist @sleep clinic. I just got retested for narcolepsy b/c the specialist says you don't sleep the same each time & he wants to see if he can get a more definitive diagnosis.

[syderial]

[quote="stevotdo"]I have recently been diagnosed with Alpha Wave intrusions after being bounced from doctor to doctor for 9 years. I have been diagnosed with everything under the sun from Laziness (I kid you not) to Schizophrenia (due to hallucinations when drifting off to sleep). My chief Complaints over the years have remained the same. EDS, Sleep drunkeness, Hypnogic Hallucinations, and Difficulty Awakening. I am shocked that never once did any of my doctors think I needed a sleep study ( It took me months of demanding to finally get one)


So I have the same problem, AWI showed up in a sleep study, have the fun hallucinations too, also possibly UARS and severe daytime sleepiness. I would like to talk to you because you have the same issues I do and live in the same state. Do you ever just desperately want to shake your doctor? I'm tired of being tired and not being taken seriously, like it's ok to brush off something that's ruining my life!

[angel08]

If you don't mind me asking-what city are you in? I like my doctors & although they are having a hard time curing this problem they are very devoted & try to keep looking for possible solutions. He has patients that will dr. from PA to see him, but you WILL wait-sometimes 3 hrs, but he's worth it. His PA that I work w/ is great too, very helpful, very insightful, & willing to work w/ you. Sometimes when drs can't figure it all out, they tent to blame it on psychological reasons(I've discussed this w/ my dr) and he agrred w/ me & also said that b/c of what we suffer from our brain chemicals are so off kilter, our brains are running at a much slower rate & we're so sleep deprived, that it's only natural that it would cause us to be depressed.(He didn't mean crazy!) You've been dealing w/ this 9 yrs, I've been for almost 5, and it's very frustrating b/c we want to feel like our old selves again. I'll be waiting to hear from you.

[angel08]

I had my follw up yester day & was also diagnosed w/ idiopathic hypersomia (EDS).

[syderial]

Are you in Missouri too? Are we all in Missouri on this thread? That would be funny. I live in Springfield. My husband is very patient, but the weird things I do in my sleep have to bug him, I know that me being tired and semi useless (and therefore angry about it) bothers him. Has anybody tried Provigil? I hate that stuff, but it did work. I just don't want to deal with the scary side affects. I don't even like to drink coffee. Anything else work?

[angel08]

No- I'm in NY. I was on provigil- now on NuVigil- which is a more concentrated form of provigil. It helps me be able to function, of course unless I've been awake all night. I am curious what side effects you had from provigil?

[syderial]

[angel08]

well, you're going to think this is strange-I don't get the the effects from NuVigil that you get from Provigil (& it's stronger), but when I even have 1 cup of regular coffee, I get the shakes terrible-probably what you feel like when you take provigil! Weird! Have they tried other things? I'm not sure what else they might prescribe for alertness. They recently suggested I try melatonin @ dinnertime to naturally regulate your sleep cycle. Taking it later than that messes your clock up.I'm trying that, so I'll let you know if that helps.

[Geekwench]

[Geekwench]