Replies to This Discussion

Permalink Reply by D. W. Conn on September 5, 2009 at 8:53pm

Arousal can be initiated by a plethora of conditions. Brief non-induced arousals are rare. Breathing abnormalities such as obstructed and central apnea can cause such arousals. Diminished breathing can cause arousals. Diminished not meeting criteria for Hypopnea or Apnea. Subtle changes in expiratory effort can induce an arousal.
Other non respiratory related events can cause arousals. Sound, televisions, light changes, snores, and even some cardiac arrhythmias. It could even be the individual suffers from poor sleep hygiene. So many external sources could also be a cause.
Why do we look at the arousal index? It can show us if there is a large number that over time the 3 second arousal adds up to minutes even hours of lost sleep. This can lead to excessive daytime sleepiness.

• ▶ Reply

Permalink Reply by SaraLynn on September 5, 2009 at 11:17pm

Thanks, D.W. I am wondering what a large number of spontaneous arousals are? My daughter's sleep study indicated a low number of respiratory arousals and a spontaneous arousal index of 14 (arousal index of 16). Is this significant?

D. W. Conn said:

Arousal can be initiated by a plethora of conditions. Brief non-induced arousals are rare. Breathing abnormalities such as obstructed and central apnea can cause such arousals. Diminished breathing can cause arousals. Diminished not meeting criteria for Hypopnea or Apnea. Subtle changes in expiratory effort can induce an arousal.
Other non respiratory related events can cause arousals. Sound, televisions, light changes, snores, and even some cardiac arrhythmias. It could even be the individual suffers from poor sleep hygiene. So many external sources could also be a cause.
Why do we look at the arousal index? It can show us if there is a large number that over time the 3 second arousal adds up to minutes even hours of lost sleep. This can lead to excessive daytime sleepiness.

• ▶ Reply

Permalink Reply by Renee on September 17, 2010 at 9:39am

Hello Jennifer,

I have extreme alpha intrusion which caused continual spontaneous arousals throughout the night, which in turn causes tremendous tiredness / fatigue. Yesterday, for example, I had to sleep 19 hours. The good news is that I am up early this morning and hoping to have a lot of waking hours today.

There is no diagnostic basis for my alpha intrusion but it may be connected to CFS. I, like you, have very little SWS and I have zero REM. I did a lot of research ( with Rock Hinkle’s help ) and gained a lot of knowledge yet found no definitive answers. However, I now have a doctor who is specialized and is treating me well.

Since every case is so very different, I will offer to you the RX info that I have learned about. It seems that some people have a lot of success with certain RX. So, here they are: For night time – Neurontin / Gabapentin; Gabitril / Tiagabine; Lunesta / Eszopiclone and Trazadone / Desyrel. Since most sleep professionals don’t seem to know about Trazadone, I’ll let you know a little about it: Trazadone is an antidepressant; it is a triazolopyridine; trazadone increases slow-wave sleep; it does not usually alter REM sleep; its half-life is 6-9 hours; side effects of trazadone include priapism (1 in 10,000 to 40,000 cases), constipation, and hypotension. When all else fails, there is another RX for night time which is very hard to get prescribed – Xyrem. Those who cannot get Xyrem / sodium oxybate may have a similar alternative in Baclofen / Lioresal. It is classified as a muscle relaxant, but also works well to improve sleep. Baclofen appears to have somewhat similar mode of action to sodium oxybate. -- And RX for day time use there is Nuvigil and Provigil.

I was prescribed all of the night time RX and none helped me except Gabitril – which was REALLY helpful, but it caused difficult cognitive problems and confusion and so I had to stop taking it. Of the daytime RX, I have just started taking Nuvigil. It doesn’t seem to be helping yet, but it is too soon to tell its potential. My doctor has advised me that for some people Nuvigil can help and for others Provigil might work.

Since none of the night time RX have worked for me, I have been prescribed the last possible RX – Xyrem. It can only be prescribed by some doctors and it takes a while to get processed and approved. The company that produces it has the rights to it tied up so tightly ‘til 2020 that it can’t be purchased at a pharmacy – it is instead FedEx’d to one’s home and you have to be there in person to sign for it – and it can’t be prescribed until every other possible RX has already been tried and failed. My 1st delivery of Xyrem arrived yesterday and so I will now be giving it a try. And, by the way, since Xyrem can cause breathing problems, if one has sleep apnea, one MUST use xPAP every night.

Since spontaneous arousals, alpha intrusion and CFS are such elusive mysteries, it is hard to find research or answers. I think it takes a very good relationship between a self-educated, persistent and self-empowered patient and an excellent, well-educated, experienced, compassionate and tenacious doctor in order to get the necessary help needed.

So I hope you will persist in your efforts and I do hope you and your doctor will be successful in helping you get well.

My best and wishing you some good SWS sleep,
Renee
_________________________________________

Jennifer Lynn Wells said:

I would like to know the answer to this as well. I was diagnosed with severe OSA three years ago but shortly after had my very large tonsils out. My most recent sleep study showed no apneas or hypopneas but an arousal index of 9.6. I slept about 6 hours and had over 60 spontaneous arousals. My sleep doctor was not helpful. He did not mention RERAS so I don't know if they were caused by flow limitations as my report did not list them.

I have chronic fatigue syndrome and I know that is associated with alpha intrusion (like fibromyalgia and rheumatoid arthritis) but I don't know if this is the same thing as spontaneous arousals.

What can be done to improve my sleep architecture? I showed very little REM or slow wave sleep on this study. The arousals were pinging me out of those stages of sleep architecture and into stage 2 sleep.

Even on the Internet I find so little about this sleep issue and I wonder why not? The only suggestion my sleep doctor made was to reduce my anxiety but benzodiazepnes are known to wreck sleep architecture so my GP and I decided to try lyrica since I have pain, it is known to reduce anxiety, and is known to increase the duration of slow wave sleep.z

Can anyone here help me understand what is happening to me? I think it could be the key to getting better.

• ▶ Reply

Permalink Reply by SaraLynn on September 17, 2010 at 10:53am

Hi Renee,

I am curious about your spontaneous arousal index...do you have the number? As I have traveled the path of advocating for myself with UARS with medical professionals who do not know much if anything about it, my husband was diagnosed with the same disorder. Currently, my young adult daughter is suffering from migraines, and we are suspicious of UARS....little to no info out there on the spontaneous arousal index that they bothered to measure during the overnight testing, but have no answers for (the explanation they gave my daughter was that an arousal could have been caused by a truck driving by during the test. Really... 119 trucks drove by that night?). I am frustrated with the lack of understanding on this..

You mentioned Provigil...I did take it before finding the right treatment for my UARS...I felt great for the first week or so on it (I described it as "feeling human again"). Then the doc wanted me to bump it to see if I could feel even better, but it resulted in a predictable panic attack in the early afternoon. When they had me split the dose, I had 2 predictable milder panic attacks (afternoon and evening). I know that everyone reacts differently to meds, but the problem with Provigil is that it is a band aid and a mask. The body and brain still suffer from the impaired sleep.

Renee said:

Hello Jennifer,

I have extreme alpha intrusion which caused continual spontaneous arousals throughout the night, which in turn causes tremendous tiredness / fatigue. Yesterday, for example, I had to sleep 19 hours. The good news is that I am up early this morning and hoping to have a lot of waking hours today.

There is no diagnostic basis for my alpha intrusion but it may be connected to CFS. I, like you, have very little SWS and I have zero REM. I did a lot of research ( with Rock Hinkle’s help ) and gained a lot of knowledge yet found no definitive answers. However, I now have a doctor who is specialized and is treating me well.

Since every case is so very different, I will offer to you the RX info that I have learned about. It seems that some people have a lot of success with certain RX. So, here they are: For night time – Neurontin / Gabapentin; Gabitril / Tiagabine; Lunesta / Eszopiclone and Trazadone / Desyrel. Since most sleep professionals don’t seem to know about Trazadone, I’ll let you know a little about it: Trazadone is an antidepressant; it is a triazolopyridine; trazadone increases slow-wave sleep; it does not usually alter REM sleep; its half-life is 6-9 hours; side effects of trazadone include priapism (1 in 10,000 to 40,000 cases), constipation, and hypotension. When all else fails, there is another RX for night time which is very hard to get prescribed – Xyrem. Those who cannot get Xyrem / sodium oxybate may have a similar alternative in Baclofen / Lioresal. It is classified as a muscle relaxant, but also works well to improve sleep. Baclofen appears to have somewhat similar mode of action to sodium oxybate. -- And RX for day time use there is Nuvigil and Provigil.

I was prescribed all of the night time RX and none helped me except Gabitril – which was REALLY helpful, but it caused difficult cognitive problems and confusion and so I had to stop taking it. Of the daytime RX, I have just started taking Nuvigil. It doesn’t seem to be helping yet, but it is too soon to tell its potential. My doctor has advised me that for some people Nuvigil can help and for others Provigil might work.

Since none of the night time RX have worked for me, I have been prescribed the last possible RX – Xyrem. It can only be prescribed by some doctors and it takes a while to get processed and approved. The company that produces it has the rights to it tied up so tightly ‘til 2020 that it can’t be purchased at a pharmacy – it is instead FedEx’d to one’s home and you have to be there in person to sign for it – and it can’t be prescribed until every other possible RX has already been tried and failed. My 1st delivery of Xyrem arrived yesterday and so I will now be giving it a try. And, by the way, since Xyrem can cause breathing problems, if one has sleep apnea, one MUST use xPAP every night.

Since spontaneous arousals, alpha intrusion and CFS are such elusive mysteries, it is hard to find research or answers. I think it takes a very good relationship between a self-educated, persistent and self-empowered patient and an excellent, well-educated, experienced, compassionate and tenacious doctor in order to get the necessary help needed.

So I hope you will persist in your efforts and I do hope you and your doctor will be successful in helping you get well.

My best and wishing you some good SWS sleep,
Renee
_________________________________________

Jennifer Lynn Wells said:

I would like to know the answer to this as well. I was diagnosed with severe OSA three years ago but shortly after had my very large tonsils out. My most recent sleep study showed no apneas or hypopneas but an arousal index of 9.6. I slept about 6 hours and had over 60 spontaneous arousals. My sleep doctor was not helpful. He did not mention RERAS so I don't know if they were caused by flow limitations as my report did not list them.

I have chronic fatigue syndrome and I know that is associated with alpha intrusion (like fibromyalgia and rheumatoid arthritis) but I don't know if this is the same thing as spontaneous arousals.

What can be done to improve my sleep architecture? I showed very little REM or slow wave sleep on this study. The arousals were pinging me out of those stages of sleep architecture and into stage 2 sleep.

Even on the Internet I find so little about this sleep issue and I wonder why not? The only suggestion my sleep doctor made was to reduce my anxiety but benzodiazepnes are known to wreck sleep architecture so my GP and I decided to try lyrica since I have pain, it is known to reduce anxiety, and is known to increase the duration of slow wave sleep.z

Can anyone here help me understand what is happening to me? I think it could be the key to getting better.

• ▶ Reply

Permalink Reply by SaraLynn on September 17, 2010 at 11:15am

Dr. Stephen Park, ENT, provides the most comprehensive information on UARS, both on his website and in his book, Sleep Interrupted.

Socknitster said:

Renee,

Thank you so much for relaying this information to me. I have done exhaustive research on medications on medline/pubmed and come up with the same list you mentioned. When I talked to my GP about this (because my sleep doc sent me to my GP to talk about meds instead of prescribing them himself--don't know why) my GP balked at the list. When I said Trazodone he shook his head in disbelief and said he wouldn't prescribe that for me because of the side effects etc etc. When I mentioned Xyrem his eyes bugged out. Another drug you might want to check out is Nefazadone/Serzone. I used to take it a long time ago. My doc is reluctant to prescribe it now but it is a great nontraditional antidepressant and has a positive affect on sleep. It is NOT an SSRI.

So I got him to agree to Lyrica due to what I stated above. It is supposed to be a more refined/kinder/gentler version of Gabapentin, from what I've read. If you haven't tried it and the Xyrem doesn't work for you you should try it. I started with 50 mg at night then added another 50 in the morning after about 10 days. Then 10 days later I'm up to 75 mg twice a day and I'm feeling more refreshed in the morning and less anxious during the day which is good! The dose for fibromyalgia is 300 mg per day. I see no need to go any higher than whatever I can tolerate. Currently tolerating 75 mg 2x a day fine and will continue to increase until I get bad side effects or reach 300 mg. It is supposed to increase slow wave sleep and may be a better alternative to Trazodone given the side effect profile you mentioned. Of course, everyone is different. I haven't seen a decrease in my pain yet, but I am feeling less groggy in the morning.

SSRI's can cause disruptions in sleep architecture like this, so I switched from my SSRI to Welbutrin and an over the counter supplement--slow release 5-HTP.

I haven't even looked into Lunesta because I have no problems falling asleep or staying asleep. I sleep like a log unless my kids wake me up for some reason. But I should look into its other effects on sleep.

I am going to get another sleep study in December. I just found out last night in my research that UARS can cause this kind of sleep disruption. Not all sleep labs do the sensitive test for this (probes in nose and mouth I think)--the belts on your chest and abdomen will not detect this. So, I am currently trying to convince my sleep doctor to let me go to a sleep lab that does this specialized sensitive test as well as finding a sleep lab nearby that does it. I may have to travel a bit. I'm going to do a split night because I may not have OSA anymore due to the tonsilectomy.

I found caffeine can also cause this. It can stay in your body longer than you might think--6-8 hours and I suspect some people don't break it down as fast as others. (I think I'm one of those.) So I now drink 1/4 caff coffee/ 3/4 decaf coffee early in the morning--I'm weaning myself slowly from the caffeine so I don't get withdrawel symptoms. I never drank more than a cup a day my whole life.

Interestingly there may be another suspect in my ailment that may or may not have something to do with sleep. Fructose Malabsorption. There is an article about it on Wikipedia if you are curious. Some people can absorb more fructose than others. Fructose is in more things than we realize--the starch in wheat is comprised of long chains of fructose. If you can't absorb all the fructose in your food it wreaks havoc in your bowel and you end up with IBS and nutritional deficiencies--the three big ones being folic acid (involved in so many things including neurotransmitter formation), tryptophan (the amino acid that is turned into serotonin and melotonin for mood and sleep regulation), and zinc which plays a role in immunity, nail and hair strenth, regulating hormones etc etc. And who knows what else you could be deficient in when your gut isn't working right to absorb what you need from food. I have a long history of IBS/bowel problems even though I don't eat much fruit so I removed most (not all--I might have 1 sandwich a day but that is it!) of the wheat from my diet. Changed to oat/buckweat/amaranth/quinoa/brown rice for all my other grain intake and focus on meat and veggies the rest of the time. I don't actually eat much anyway, so everything I put in my mouth has to be a superfood. After just a few days of this, I saw my bowel habits change for the better. If I slip up and eat too much wheat, I go back to my old bowel habits so I am careful. This is NOT celiac. For more information and some links to scientific journals etc about fructose malabsorption click on this link to a thread I created on cpaptalk. cpaptalk link

Sure hope this information helps someone else. I am going to do more research into the drugs you mentioned as well as UARS. I hope I find a solution because although I am feeling so much better (especially since I learned of fructose malabsorption and started Lyrica) but I want to get to optimum health without any prescription meds or artificial devices!

Jen

• ▶ Reply

Permalink Reply by Renee on September 17, 2010 at 2:12pm

Hello Jen ~

Thanks for all your thoughts.

My doctor’s very 1st choice is Gabapentin. In fact when I was doing research, I found some research on line about Gabapentin about clinical research that he had conducted. When Gabapentin didn’t work he wasn’t inclined to prescribe Lyrica, but I will keep in mind. Also, thank you for letting me know about Nefazadone / Serzone – it’s good to know about that too – just in case. Regarding Lunesta, I was surprised when my doctor prescribed that because I think of it as a sleep aid / med and, like you, I have no problem falling asleep or, so I thought, staying asleep. I always thought I slept like a log through the night ‘til I had 4 sleep studies that showed that I waking up all through the night. So, since my doctor was trying his best to help me, I agreed to try Lunesta – but it wasn’t effective and Lunesta happened to cause me to have one of the severe side effects which required me to stop taking it just a few days after starting.

BTW, the research you have done and the analysis you have synthesized is truly AMAZING ! – and I thank you for sharing so much with me – especially about Fructose Malabsorption. I have had a lot of GI problems – even would up being hospitalized for ischemic cholitis . . . 2 doctors thought that I must have Celiac disease and both tested me for it but both tests reports indicated that I do not have that. But, as far as I know, no one thought about Fructose Malabsorption. When I next visit with my Endocrinologist, who thought to test me for Celiac and who believes in out-of-the-ordinary possibilities even more than my GI specialist, I will ask him about that. In the meantime, I am going to use the advise on Wikipedia regarding Fructose Malabsorption – just makes good health sense.

You are surely proactive in taking care of your health and I wish you all the best in getting the best care you can from your doctors and in gaining your best health.

Renee
_________________________________

Socknitster said:

Renee,

Thank you so much for relaying this information to me. I have done exhaustive research on medications on medline/pubmed and come up with the same list you mentioned. When I talked to my GP about this (because my sleep doc sent me to my GP to talk about meds instead of prescribing them himself--don't know why) my GP balked at the list. When I said Trazodone he shook his head in disbelief and said he wouldn't prescribe that for me because of the side effects etc etc. When I mentioned Xyrem his eyes bugged out. Another drug you might want to check out is Nefazadone/Serzone. I used to take it a long time ago. My doc is reluctant to prescribe it now but it is a great nontraditional antidepressant and has a positive affect on sleep. It is NOT an SSRI.

So I got him to agree to Lyrica due to what I stated above. It is supposed to be a more refined/kinder/gentler version of Gabapentin, from what I've read. If you haven't tried it and the Xyrem doesn't work for you you should try it. I started with 50 mg at night then added another 50 in the morning after about 10 days. Then 10 days later I'm up to 75 mg twice a day and I'm feeling more refreshed in the morning and less anxious during the day which is good! The dose for fibromyalgia is 300 mg per day. I see no need to go any higher than whatever I can tolerate. Currently tolerating 75 mg 2x a day fine and will continue to increase until I get bad side effects or reach 300 mg. It is supposed to increase slow wave sleep and may be a better alternative to Trazodone given the side effect profile you mentioned. Of course, everyone is different. I haven't seen a decrease in my pain yet, but I am feeling less groggy in the morning.

SSRI's can cause disruptions in sleep architecture like this, so I switched from my SSRI to Welbutrin and an over the counter supplement--slow release 5-HTP.

I haven't even looked into Lunesta because I have no problems falling asleep or staying asleep. I sleep like a log unless my kids wake me up for some reason. But I should look into its other effects on sleep.

I am going to get another sleep study in December. I just found out last night in my research that UARS can cause this kind of sleep disruption. Not all sleep labs do the sensitive test for this (probes in nose and mouth I think)--the belts on your chest and abdomen will not detect this. So, I am currently trying to convince my sleep doctor to let me go to a sleep lab that does this specialized sensitive test as well as finding a sleep lab nearby that does it. I may have to travel a bit. I'm going to do a split night because I may not have OSA anymore due to the tonsilectomy.

I found caffeine can also cause this. It can stay in your body longer than you might think--6-8 hours and I suspect some people don't break it down as fast as others. (I think I'm one of those.) So I now drink 1/4 caff coffee/ 3/4 decaf coffee early in the morning--I'm weaning myself slowly from the caffeine so I don't get withdrawel symptoms. I never drank more than a cup a day my whole life.

Interestingly there may be another suspect in my ailment that may or may not have something to do with sleep. Fructose Malabsorption. There is an article about it on Wikipedia if you are curious. Some people can absorb more fructose than others. Fructose is in more things than we realize--the starch in wheat is comprised of long chains of fructose. If you can't absorb all the fructose in your food it wreaks havoc in your bowel and you end up with IBS and nutritional deficiencies--the three big ones being folic acid (involved in so many things including neurotransmitter formation), tryptophan (the amino acid that is turned into serotonin and melotonin for mood and sleep regulation), and zinc which plays a role in immunity, nail and hair strenth, regulating hormones etc etc. And who knows what else you could be deficient in when your gut isn't working right to absorb what you need from food. I have a long history of IBS/bowel problems even though I don't eat much fruit so I removed most (not all--I might have 1 sandwich a day but that is it!) of the wheat from my diet. Changed to oat/buckweat/amaranth/quinoa/brown rice for all my other grain intake and focus on meat and veggies the rest of the time. I don't actually eat much anyway, so everything I put in my mouth has to be a superfood. After just a few days of this, I saw my bowel habits change for the better. If I slip up and eat too much wheat, I go back to my old bowel habits so I am careful. This is NOT celiac. For more information and some links to scientific journals etc about fructose malabsorption click on this link to a thread I created on cpaptalk. cpaptalk link

Sure hope this information helps someone else. I am going to do more research into the drugs you mentioned as well as UARS. I hope I find a solution because although I am feeling so much better (especially since I learned of fructose malabsorption and started Lyrica) but I want to get to optimum health without any prescription meds or artificial devices!

Jen

• ▶ Reply

Permalink Reply by Renee on September 17, 2010 at 3:11pm

Hello SaraLynn,

Here’s a snapshot during 5 hr & 24 minutes of actual sleep time:

245 – respiratory arousals
163 – spontaneous arousals
47 – awakenings

I went to 2 sleep labs and had 4 sleep studies and I surely commiserate with you about being able to get an understanding about arousals. I found that the doctors that I went to were not interesting in providing the time or information to me. They seemed inclined to only diagnose sleep apnea, prescribe equipment and, of course, bill me. However, I am now seeing a new doctor who is really trying to help me. He, however, told me right up front that there is no way to test or provide a reason why I have such extreme alpha intrusion. I sure wasn’t pleased to hear that but, through our conversation, I was able to accept his reasoning that there won’t be an “answer” – but that there ARE ways to treat the problem. First off, he wanted me to try taking a night time and a day time RX and then in time, as I became more rested and am functioning better, he wants to stop the day time RX and decrease the night time RX to the lowest dosage.

I agree with you that I think of Provigil as a band aid and a mask and that the body and brain still suffer from the impaired sleep. So I told my new doctor that for those reasons I didn’t want to take a daytime RX until I was taking a night time RX that was actually helping to increase my slow wave sleep and, possibly, REM. And then I would consider taking a day time RX for a while as he suggested. This doctor is not like other doctors who thinks that patients can not possible know anything – certainly not about their own health. He, instead, treats me with consideration and respect and is more than agreeable to take my thoughts into consideration. And so he agreed to work on getting a night time RX to work first. However, after he had about run the gamete of night time RX and nothing worked, either because I had too difficult side effects or the RX just weren’t effective, he started the process to have me permitted to take the last night time RX available – Xyrem. But it takes a while to get through the process to gain permission to take Xyrem and so I began taking Nuvigil – 150 mg during the day while waiting. It didn’t help at 1st and it also had the side effect of causing me TOO much stomach pain and nausea, so I had to stop that also. But I have now re-started Nuvigil at 75 mg and I am not sick AT ALL and, although it’s too early to tell yet, it may even be helping me be more awake during the day. . . . fyi, as you said, everyone reacts differently to meds and so I thought to let you know that my doctor advised me that Nuvigil works for some people and Provigil works for others.

Also, I am sure sorry that your sleep lab decided to construct their facility along such a truck-laden roadway !!! --I must say that their attempt at an explanation to you was absolute lunacy !

It sure sound like, even with all your best efforts, you are having a difficult time getting answers and help; yet, you are curious, motivated, able to communicate well on both health and RX experiences and willing to express yourself and seek the help you need and I congratulate you for all your abilities and courageous efforts. And I do really wish for you, your husband and your daughter that you all get the help you need ASAP.

Best,
Renee
__________________________________________________________

SaraLynn said:

Hi Renee,

I am curious about your spontaneous arousal index...do you have the number? As I have traveled the path of advocating for myself with UARS with medical professionals who do not know much if anything about it, my husband was diagnosed with the same disorder. Currently, my young adult daughter is suffering from migraines, and we are suspicious of UARS....little to no info out there on the spontaneous arousal index that they bothered to measure during the overnight testing, but have no answers for (the explanation they gave my daughter was that an arousal could have been caused by a truck driving by during the test. Really... 119 trucks drove by that night?). I am frustrated with the lack of understanding on this..

You mentioned Provigil...I did take it before finding the right treatment for my UARS...I felt great for the first week or so on it (I described it as "feeling human again"). Then the doc wanted me to bump it to see if I could feel even better, but it resulted in a predictable panic attack in the early afternoon. When they had me split the dose, I had 2 predictable milder panic attacks (afternoon and evening). I know that everyone reacts differently to meds, but the problem with Provigil is that it is a band aid and a mask. The body and brain still suffer from the impaired sleep.

Renee said:

Hello Jennifer,

I have extreme alpha intrusion which caused continual spontaneous arousals throughout the night, which in turn causes tremendous tiredness / fatigue. Yesterday, for example, I had to sleep 19 hours. The good news is that I am up early this morning and hoping to have a lot of waking hours today.

There is no diagnostic basis for my alpha intrusion but it may be connected to CFS. I, like you, have very little SWS and I have zero REM. I did a lot of research ( with Rock Hinkle’s help ) and gained a lot of knowledge yet found no definitive answers. However, I now have a doctor who is specialized and is treating me well.

Since every case is so very different, I will offer to you the RX info that I have learned about. It seems that some people have a lot of success with certain RX. So, here they are: For night time – Neurontin / Gabapentin; Gabitril / Tiagabine; Lunesta / Eszopiclone and Trazadone / Desyrel. Since most sleep professionals don’t seem to know about Trazadone, I’ll let you know a little about it: Trazadone is an antidepressant; it is a triazolopyridine; trazadone increases slow-wave sleep; it does not usually alter REM sleep; its half-life is 6-9 hours; side effects of trazadone include priapism (1 in 10,000 to 40,000 cases), constipation, and hypotension. When all else fails, there is another RX for night time which is very hard to get prescribed – Xyrem. Those who cannot get Xyrem / sodium oxybate may have a similar alternative in Baclofen / Lioresal. It is classified as a muscle relaxant, but also works well to improve sleep. Baclofen appears to have somewhat similar mode of action to sodium oxybate. -- And RX for day time use there is Nuvigil and Provigil.

I was prescribed all of the night time RX and none helped me except Gabitril – which was REALLY helpful, but it caused difficult cognitive problems and confusion and so I had to stop taking it. Of the daytime RX, I have just started taking Nuvigil. It doesn’t seem to be helping yet, but it is too soon to tell its potential. My doctor has advised me that for some people Nuvigil can help and for others Provigil might work.

Since none of the night time RX have worked for me, I have been prescribed the last possible RX – Xyrem. It can only be prescribed by some doctors and it takes a while to get processed and approved. The company that produces it has the rights to it tied up so tightly ‘til 2020 that it can’t be purchased at a pharmacy – it is instead FedEx’d to one’s home and you have to be there in person to sign for it – and it can’t be prescribed until every other possible RX has already been tried and failed. My 1st delivery of Xyrem arrived yesterday and so I will now be giving it a try. And, by the way, since Xyrem can cause breathing problems, if one has sleep apnea, one MUST use xPAP every night.

Since spontaneous arousals, alpha intrusion and CFS are such elusive mysteries, it is hard to find research or answers. I think it takes a very good relationship between a self-educated, persistent and self-empowered patient and an excellent, well-educated, experienced, compassionate and tenacious doctor in order to get the necessary help needed.

So I hope you will persist in your efforts and I do hope you and your doctor will be successful in helping you get well.

My best and wishing you some good SWS sleep,
Renee
_________________________________________

Jennifer Lynn Wells said:

I would like to know the answer to this as well. I was diagnosed with severe OSA three years ago but shortly after had my very large tonsils out. My most recent sleep study showed no apneas or hypopneas but an arousal index of 9.6. I slept about 6 hours and had over 60 spontaneous arousals. My sleep doctor was not helpful. He did not mention RERAS so I don't know if they were caused by flow limitations as my report did not list them.

I have chronic fatigue syndrome and I know that is associated with alpha intrusion (like fibromyalgia and rheumatoid arthritis) but I don't know if this is the same thing as spontaneous arousals.

What can be done to improve my sleep architecture? I showed very little REM or slow wave sleep on this study. The arousals were pinging me out of those stages of sleep architecture and into stage 2 sleep.

Even on the Internet I find so little about this sleep issue and I wonder why not? The only suggestion my sleep doctor made was to reduce my anxiety but benzodiazepnes are known to wreck sleep architecture so my GP and I decided to try lyrica since I have pain, it is known to reduce anxiety, and is known to increase the duration of slow wave sleep.z

Can anyone here help me understand what is happening to me? I think it could be the key to getting better.

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Permalink Reply by Renee on September 17, 2010 at 3:21pm

Hello again Jen ~

As I mentioned to you before, 2 of my doctors thought I likely had Celica disease and so they tested me twice - so the info on Fructose Malabsorption is especially good for me to know . . . but as you have explained, it would be good for everyone to know ! Thanks also for mentioning about tonsils and orthodontics - particularly explaining to go to a NON EXTRACTION ORTHODONTICS. All your suggestins are greatly appreciated.

Best,
Renee
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Socknitster said:

Renee,

My research into Fructose Malabsorption revealed that a lot of people who think they have celiac, test negative for it, but KNOW that they feel better when they avoid wheat, so they conclude that they have subclinical celiac--but truly it is fructose malabsorption. Hope that sentence makes sense to anyone but me!

Thanks about your kind comments. I came down with the flu last October and never realy completely recovered. They call it Chronic Fatigue Syndrome--the stress of a viral illness usually brings it on. I suspect that there are many other factors that may bring it on. In my case these spontaneous arousals messing up my sleep and not allowing my body to heal (you do most of your healing in your sleep--you accumulate tiny damages all over your body all day and normally these are fixed at night but if you don't sleep well they accumulate and this leads to the pain of fibromyalgia, RA, CFS etc etc.)

And the fructose malabsorption didn't help. I don't believe that it is a disease--I believe it is a variation on normal (as many as 40% of the population may have it!) People were never intended to eat wheat (or fruit/fruit juices) all day long, no matter how you think humans came about thru God, evolution or mother nature--wheat is a primary component of the modern diet and it was never meant to be that way. We can thank our government for subsidizing big farming and the top crops of wheat/corn/soy--the big three we eat so much of.

Anyway since this happened to me, my life changed. I used to knit, have lots of hobbies like soap making. Now all I do is health research into what may be the primary causal agents in my disease. I'm unwilling to accept these bandaids as you put it. I don't want to mask my symptoms. I want to cure them and feel better and have a life free of worry. My mother got breast cancer when she was only a few years older than I am now and she has had many of the symptoms I have for as long as I can remember. All this despite the fact that I eat an A+ diet (my mom's has never been good). She now has diabetes, high blood pressure and has had one heart scare. I do NOT want to go there!

Sometimes it makes me crazy. I crave doing fun things in my spare time but my inner drive to pursue my cure won't let me relax very often. Every chance I get, here I am. Reading pubmed, scouring the internet and books for clues.

Luckily I have been getting better slowly but surely as I implement the things I learn about.

Another thing you should know about me is that I am pursuing orthodontics to address my sleep apnea. I had my tonsils out and that helped immensely. In fact my sleep doc said yesterday it is possible the apnea is gone (trying not to get hopes up too much!) I did a lot of research into upper respiratory structures and how they may affect sleep apnea. Turns out the overbite that my parents did not deem worth correcting as a teenager may be the root cause of my breathing obstruction.

So, I drove 50 miles to see one of the best orthodontists in the area (speciallizes in adults as well) to see if he thought he could could correct my overbite. He thinks he can get me most of the way there. At any rate my teeth will be suitable for the MMA surgery if it doesn't acheive as much as we hoped. I've been told I have to wear braces at least 1 year before I could have the MMA surgery. The MMA surgery is a cure for 80 to 95% of people depending on who does the surgery.

But if the braces get me off my bipap, I probably will not do the surgery unless symptoms recur over time. The idea is to make the mouth larger to give the tongue more room--same concept behind the MMA. BTW it HAS TO BE an orthodontist that specializes in NON EXTRACTION ORTHODONTICS. You have to look hard for them. Old school orthodontists extract teeth and pull the teeth in with braces making the mouth smaller. Non extraction orth's do not extract teeth and use self-ligating braces to pull the teeth out into a nice wide smile.

Make sure you click on the link to cpaptalk to read the stuff I posted on fructose malabsorption. You don't have to be a member to read it. I'm telling everyone in the world I can about this. It is brand new information. The first research into this came out in 2007 I believe.

Jen

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Permalink Reply by Renee on September 18, 2010 at 12:48am

Hello Jen ~

I read the article you posted with great interest. I had wondered why my new doctor, who I have found to be trying everything - RX-wise to help me had shown no interest in Trazadone . . . hmm, seems he likely knows even more than I already thought he did - which is quite a lot ! Knowing about the potential serious side effects is really interesting -- and important -- to know about. After reading the article, I would not take Trazadone. Your post is not only much appreciated but, I think, health-saving as well.

Thank you very much for posting this info.

Best,
Renee
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Socknitster said:

about chronic fatigue/fibromyalgia and Trazodone

Today in my inbox. Information on Trazodone as a treatment for chronic fatigue/fibromyalgia.

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Permalink Reply by RockRpsgt on September 18, 2010 at 5:50am

Nice discussion ladies. welcome back Renee, always a pleasure to here from you.

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Permalink Reply by Pat Kniel on September 18, 2010 at 1:41pm

I have been reading this discussion with great interest. I recently added to the discussion I started about my many arrousals so this really struck home. Jen, I really admire the research you have done. Once upon a time I could retain information but now I can't remember anything.I will add to this topic. I had a very bad reaction to Trazadone but I have Mitochondrial Myopathy and that might be the reason.

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Permalink Reply by Renee on September 18, 2010 at 10:03pm

Hellooooooooooooooo Rock !

Thanks so much for the shout - I miss you. I have been thinking of you. I am going to have a late night tonight (if I can keep my eyes open) and then I'm heading out of town for a week. I do hope you are doing well and I'll look forward to getting back with you on my return.

All my best,
Renee
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Rock Hinkle said:

Nice discussion ladies. welcome back Renee, always a pleasure to here from you.

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