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Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"As of now I no longer have to use a chin strap.  I am anxious about the sleep study.  Wondering if I will be able to sleep WITHOUT the CPAP….even thought I hate it it is a part of every night now and is what I am used to.  "
Sunday
Clueless in Redwood Shores replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"I had it on the same outpatient basis.  Much pain, no long term gain.  I did not have the annual repetition - that might or might not have made the difference. "
Sunday
Mary Z replied to richard graham's discussion mouth breathing
"glad to hear it, Richard.  Keep us posted."
Apr 13
Mary Z left a comment for richard graham
"Glad to hear it's working, Richard."
Apr 11
richard graham replied to richard graham's discussion mouth breathing
"The chin strap is helping. Been having better sleep. Thanks Ginny and Mary for your help"
Apr 11
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Thanks, Mary~  Fingers are crossed.  My pressure is one point lower than when I began (7) and AHI is some lower (7 day average).  I am anxious about sleep study as I have not slept without CPAP in 2.5 years!   "
Apr 6
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Good job, Ginny Hope the sleep study shows some good results."
Apr 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Last procedure done!  This time he gave me meds to take before so less anxiety while waiting!  For the first time I was able to eat normal food on the way home after the procedure.  No pain after 12 hours.  If it only works.…"
Apr 5
Mary Z replied to richard graham's discussion mouth breathing
"Some folks run their humidifiers in passover mode- not turning on the heat just letting the air blow over the water.  That would not give any heat though. "
Apr 5
richard graham replied to richard graham's discussion mouth breathing
"Interesting, I actually feel a little better when I don't use the humidifier, but the humidifier helps with sinuses. The cold air stuff's me up. Gonna try running heat and a nasal spray"
Apr 4
Mary Z replied to richard graham's discussion mouth breathing
"Good luck with it- let us know how you do, Richard."
Apr 4
richard graham replied to richard graham's discussion mouth breathing
"I just picked up a new chin strap and will use it with my ultra mirage."
Apr 4
richard graham posted a discussion

nasal sprays

Just wanting some suggestions for some good nasal sprays to dry up sinusus. Thank you
Apr 3
richard graham replied to richard graham's discussion mouth breathing
"Thanks Mary"
Apr 3
Mary Z replied to richard graham's discussion mouth breathing
"I have both.  I use the chin strap with my Wisp and I also have a FFM if I choose to use that one. I'm a mouth breather.  I find nasal masks are easier to fit without leaks"
Apr 3
Mary Z replied to Mary Z's discussion Using comfort features
"Nasacort is now available without a prescription.  I personally use Afrin on the rare nights I need it for being stuffed up."
Apr 3
richard graham replied to Mary Z's discussion Using comfort features
"Mary, do you recommend a good nasal spray?"
Apr 2
richard graham replied to richard graham's discussion mouth breathing
"Wondering if mouth breathers do better with FFM"
Apr 2
richard graham posted a discussion

mouth breathing

I'm a mouth breather, and am wondering weather to get a chin strap or affm
Apr 2
richard graham replied to Mary Z's discussion Using comfort features
"I've been thinking about trying a nasal spray. Thanks that's useful info."
Apr 2

My sleep doc started me on a very small dose of Neurontin in the hopes of helping me from waking up throughout the night. I am on about 90mg of a liquid dose of Neurontin due to my not tolerating most medications. I have been on it for about 5 nights (although I started on 62.5 mgs for the first 2 nights) and it might be helping somewhat, however, my AHI went up considerably last night. Have no idea why though. Any ideas?

 

Also wondering if anyone else found small dosing of Neurontin to help with less sleep fragmentation? And did you find any side effects, considering how many are usual with Neurontin?

 

Thanks for your help/thoughts.

Views: 3506

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Replies to This Discussion

One of our members is on neurontin for the same reason. I PMed her. Hopefully she will respond.

Hello Mary ~

 

I haven’t been on SG for a while because of excessive tiredness and related GI problems but Rock sent me a post to let me know that I might be able to offer some thoughts from my own experience.  I’m glad to hear from Rock and I’ll let you know what I know.  I have tried just about every sleep RX and I’ll tell you about more than Neurontin because I also have problems tolerating most RX. 

 

Just this week I am having to stop taking Xyrem because of the tremendously problematic GI problems that have occurred.  However, my gallbladder is going to have to be removed because it is causing such a ruckus with my innards so I may have luck with Xyrem in the future after my gallbladder is out.  Because I have had a series of GI problems, I would suggest that you see a really, really good GI specialist in order to find out if there’s something that can be done to specifically help you because sleep apnea is known to increase susceptibility to GI problems and, I know in my case, GI problems definitely increase my tiredness.

 

Now, back to RX, I took Neurontin in pill form at 100, 200 and 300 mg but stopped taking it because it was not effective, it caused weight gain and I, too, had an increased # of apnea events.  I don’t know if others have had this experience.

 

Here are some of my other experiences with sleep RX:

 

Lunesta 30 mg – discontinued because of experiencing a swollen face which is a side effect which requires that one stop the RX.  I also had more excessive tiredness while taking Lunesta.  On stopping other sleep RX, I didn’t experience any follow-up effects when I stopped taking them.  However, after stopping Lunesta, for a short while, I experienced anxiety, unusual dreams, leg and muscle cramps and shakiness.

 

Gabitril – I had to discontinue at 4 mg because it caused too much difficulty with confusion, cognitive problems and short term memory loss and at 2 mg it was not effective but still caused confusion and cognitive problems.  Yet, I am sorry to have had to stop taking Gabitril because it is the ONLY sleep RX that actually had a real effect on countering my tiredness.  I sure wish I could take Gabitril.

 

Also, during the day, I first took Nuvigil, starting at 150 mg but I stopped because of it being ineffective and because it caused stomach upset.  I then took 75 mg but stopped because, while I no longer had an upset stomach, it remained ineffective.

 

Lastly, I am now taking Provigil 200 mg during the day.  I can increase it to 400 mg but I haven’t done that yet.  Although I can’t say for sure, it just may be helping.

 

Also I have started taking Propranolol to replace Topomax for benign intention tremor because Topomax is not good to be taken in combination with Xyrem – and my doctor has permitted me to go ahead with my suggestion that I take only 10 mg in the morning and then I take the other 30 mg when I go to bed because of my idea that it might help with my alpha intrusion – which is my main sleep culprit – and yet still control tremor during the day.  Rock and I have investigated alpha intrusion and this doctor has been willing to accept my out of the ordinary suggestion about trying to have the Propranolol at night as an antidote for alpha intrusion – and, surprise, surprise, this does seem to be helping with my tiredness.

 

So, there you have it . . . my experience with RX.  Hope it helps.

 

All the best to you,

Renee

Thanks, Renee for your getting back. Sorry to hear about your not being able to tolerate the Xyrem. What a shame. Oh how I loved taking Xyrem. The only RX that worked for me to help me sleep deeply and feel rested in the morning with absolutely no side effects. Only problem for me is that my insurance company stopped paying for it back in February saying I did not have narcolepsy -- never mind that they were paying for it for 6 years knowing I did not have narcolepsy.

Well now it costs $2700 a month and even with their deep discount of $1500, I cannot afford paying $1400 a month for the RX. Luckily I had a small stash of the stuff and taking it only 1x a night for 8 months, got me thru to almost October. Before my my passed in September she left me $2000 for a month's supply. What a godsend.

 

Now let's see what else I've taken: Elavil, Trazadone, Sinequin, and Ambien all for sleep years back before the Xyrem. All but the Ambienl made me drowsy (actually zombie like), but I never was able to sleep. The Ambien did not make me sleep either, but it did make me suicidal. I even used Neurontin way back then for the fibromyalgia, but it only clouded my brain. I was on a much higher dose back then, probably 1800 or 2400 mgs. I gave it up as it did nothing for the fibro and it didn't do anything for the sleep either.

 

So the doctor wanted to give me something to help me sleep at this point, so I felt I had to try something again. I thought maybe I was in a different place, and the medicines might affect me differently at this point. He said the neurontin might help with the constant arousals. He said I should start on a low dose since rxs don't agree with me. So I started on 62.5mgs (I am using the liquid so I can get the small dosing). I have worked my way up to probably 100mgs last night and I am afraid of going any further. And I am not sure it is really helping, and I was really tired today after thinking I slept okay last night. 

 

I have been on CPAP for about 5 weeks or so, and I feel miserable. I am so tired. I was hoping someone used the neurontin and had something good to say about it. Oh well, might be time to go back to the drawing board.


Thanks, again, Renne. Good luck with your gallbladder surgery, and hopefully you can get back on the Xyrem -- a real wonder drug if there ever was one!

Renee said:

Hello Mary ~

 

I haven’t been on SG for a while because of excessive tiredness and related GI problems but Rock sent me a post to let me know that I might be able to offer some thoughts from my own experience.  I’m glad to hear from Rock and I’ll let you know what I know.  I have tried just about every sleep RX and I’ll tell you about more than Neurontin because I also have problems tolerating most RX. 

 

Just this week I am having to stop taking Xyrem because of the tremendously problematic GI problems that have occurred.  However, my gallbladder is going to have to be removed because it is causing such a ruckus with my innards so I may have luck with Xyrem in the future after my gallbladder is out.  Because I have had a series of GI problems, I would suggest that you see a really, really good GI specialist in order to find out if there’s something that can be done to specifically help you because sleep apnea is known to increase susceptibility to GI problems and, I know in my case, GI problems definitely increase my tiredness.

 

Now, back to RX, I took Neurontin in pill form at 100, 200 and 300 mg but stopped taking it because it was not effective, it caused weight gain and I, too, had an increased # of apnea events.  I don’t know if others have had this experience.

 

Here are some of my other experiences with sleep RX:

 

Lunesta 30 mg – discontinued because of experiencing a swollen face which is a side effect which requires that one stop the RX.  I also had more excessive tiredness while taking Lunesta.  On stopping other sleep RX, I didn’t experience any follow-up effects when I stopped taking them.  However, after stopping Lunesta, for a short while, I experienced anxiety, unusual dreams, leg and muscle cramps and shakiness.

 

Gabitril – I had to discontinue at 4 mg because it caused too much difficulty with confusion, cognitive problems and short term memory loss and at 2 mg it was not effective but still caused confusion and cognitive problems.  Yet, I am sorry to have had to stop taking Gabitril because it is the ONLY sleep RX that actually had a real effect on countering my tiredness.  I sure wish I could take Gabitril.

 

Also, during the day, I first took Nuvigil, starting at 150 mg but I stopped because of it being ineffective and because it caused stomach upset.  I then took 75 mg but stopped because, while I no longer had an upset stomach, it remained ineffective.

 

Lastly, I am now taking Provigil 200 mg during the day.  I can increase it to 400 mg but I haven’t done that yet.  Although I can’t say for sure, it just may be helping.

 

Also I have started taking Propranolol to replace Topomax for benign intention tremor because Topomax is not good to be taken in combination with Xyrem – and my doctor has permitted me to go ahead with my suggestion that I take only 10 mg in the morning and then I take the other 30 mg when I go to bed because of my idea that it might help with my alpha intrusion – which is my main sleep culprit – and yet still control tremor during the day.  Rock and I have investigated alpha intrusion and this doctor has been willing to accept my out of the ordinary suggestion about trying to have the Propranolol at night as an antidote for alpha intrusion – and, surprise, surprise, this does seem to be helping with my tiredness.

 

So, there you have it . . . my experience with RX.  Hope it helps.

 

All the best to you,

Renee

Hello Mary ~

 

Seems that you and I have some similarities between us – we both wake up throughout the night and we both can’t tolerate a lot of RX and we’ve both taken Xyrem – which is not very often prescribed.

 

I certainly agree with you about the problematic side effects of RX – Elavil, Trazadone, Sinequan and Ambien.  I haven’t taken them and wouldn’t because of the type of RX that they are – and, thank goodness, the excellent sleep doctor that I am seeing does not prescribe them.  And, I am so very sorry about the tremendous problem that you are encountering in not being able to take Xyrem because of your insurance company’s denial – more on that in a little bit.

 

By the way, I notice that you are in New York.  I had a great deal of difficulty finding a doctor who would provide any reasonable care for complex sleep problems.  My original sleep studies were at Columbia Presbyterian Medical Center Sleep Disorders Center at 168th Street, which is conducted in through their pulmonology department – and then at NY Sleep Associates which is, in a rather shady way, connected with NYU Sleep Disorders Clinic – both Columbia and NY Sleep Assoc. proved to be VERY poor experiences for me. 

 

But then I went to see Dr. Carl Bazil, Director, Division of Comprehensive Epilepsy and Sleep Center, Columbia University Presbyterian Medical Center, The Neurological Institute, 212-305-1742.  The Neurological Institute is a completely separate entity from Columbia’s main hospital Sleep Disorders Clinic.  Dr. Bazil did not conduct sleep studies because I had already 4 prior to meeting with him but, even without his own sleep studies, his treatment of me has been so very, very good.  He is more extremely knowledgeable about sleep studies, problems and RX.  I have visited with him a few times and he actually cares about sleep problems and his patients and his treatment in EVERY way has been EXCELLENT.  And, the entire staff at the Sleep Center of the Neurological Institute is also very, very good – from the initial contact through the person who makes appointments through Dr. Bazil’s nurse practitioner and, of course, Dr. Bazil, himself.

 

You probably know that not that many doctors can prescribe Xyrem, but Dr. Bazil can.  I have done a ton of research and I can tell you that Dr. Bazil knows about ALL the possible sleep RX – and prescribes them in a logical and reliable order.  And as with, I expect, all sleep doctors, is also likely required by some law, to prescribe Xyrem last, after all else has failed. 

 

I find it so very awful that you have not able to take Xyrem especially since it has been known to work, and to be the only RX that does work for you.  If I were to go on about insurance companies, you would be reading this message for much, much TOOOOOOO long.  So, I will stick to the situation at hand and let you know that your insurance company should not have the right to stop you from taking Xyrem on the grounds stated – that you don’t have Narcolepsy – especially since they knew for 6 years that you don’t have Narcolepsy.  – And, besides that, Xyrem is prescribed – not only for Narcolepsy – but, also, for excessive daytime sleepiness.  That is why I was taking it and, obviously, why you were taking it and your insurance company had already approved it on those grounds.

 

Regarding the insurance company – yes, yes, yes, they would likely want so very much to refuse your taking Xyrem – but, as with other insurance company denials, a general rule of thumb is that you can appeal and you will, of course, most likely be denied after your 1st appeal; then you need to appeal again – and, you could likely be denied, yet again, after your 2nd appeal.  – I forget, whether in NY state, if it is necessary to get 2 or 3 appeals denied through your insurance company – but then you can appeal the insurance company’s denial(S) to the NY State Dept. of Health.  It is only at that point that a patient usually gets redress to their situation.  You can contact the NY State Dept. of Health – they have a process set up for this type of appeal. 

 

I suggest that in each appeal to your insurance company that you include some mention that your health is compromised by their incorrect denial – and that Xyrem is prescribed not only for Narcolepsy but also for excessive sleepiness which is the grounds on which you had already been approved by the insurance company for 6 years – and that Xyrem had been prescribed for you only after ALL other sleep RX had been tried and found to be ineffective and / or had caused side effects injurious to your health.  You can check Xyrem’s literature or contact Xyrem for the exact wording of the purposes for which Xyrem is allowed under law to be used but I think it is for Narcolepsy and for excessive tiredness.   – And, it is a good idea to mention in each appeal to the insurance company that you will also be appealing to the NY State Dept. of Health and “cc” each insurance company appeal to the NY State Dept. of Health.  The insurance companies do not like to be reported to the State Dept. of Health so sometimes that can help to get an appeal to your insurance company processed in your favor.  Of course, considering the cost of Xyrem, your insurance company could continue to deny you through the entire appeal process and it would then only be in your appeal process to the NY State Dept. of Health that you could get redress.  However, it is through the State appeal process where a large % of patients get their insurance appeal approved – so going through the entire appeal process is not just a waste of time; but most people don’t know about it – or get worn out after the initial insurance company denial or after the 1st, 2nd or 3rd appeal.  Once you’ve gone that far, it is well worth continuing with the State.  And, for you, if you can muster the reserves needed to get through the process and, if you are then again approved for Xyrem, it would have been more than worth it !

 

And, since Xyrem wants to sell Xyrem, they may have some way to assist you with your appeal.  Also, Xyrem recently applied for permission with the FDA to be allowed to prescribe Xyrem for Fibromyalgia.  Their petition was denied but they will be applying again.  So, since you have Fibro, Xyrem might be more inclined to help you with your appeal in order to bolster their efforts in the future for prescribing for Fibro.  Rock and I did a lot of research in order to try and find out the possible cause of my alpha intrusion because, as Rock so clearly and succinctly stated it, one needs to figure out the cause of the alpha intrusion in order to resolve it.  – And, you already know the cause of your waking up throughout the night – because you have the most commonly known cause – Fibro !

 

Also, how about your DOCTOR’S OFFICE appealing for you ?!?

 

I, like you am willing to consider that I might be, somehow, different than at a previous point in time and so I’m willing to consider a previous treatment.  About Neurontin – the 1st RX that Dr. Bazil and, it seems to me,  most other sleep doctors prescribe is Neurontin and, although in my case it was not effective, it caused immediate, and a lot of, weight gain and I, too, had an increased # of apnea events – the reason that it is the 1st RX tried is because a lot of patients do have success with it.  Surely take your time with increasing Neurontin, as you would with any other RX – and Good Luck with it !

 

By the way, I have always through I slept exceedingly well at night – WOW – was I surprised after my sleep studies were conducted that, although I thought I was sleeping “Ooh, so soundly” through the night that I wasn’t sleeping much at all !!!  Especially since you have fibro, you could be having a similar experience.

 

For you and me, sure CPAP for apnea is important, but if we still aren’t sleeping due to another cause – we will remain tired !  As you are keeping track of the of your apnea events – particularly the “AI” (because the reading of “HI’s” can be too unreliable, although it’s good to have an idea of the “trend” up or down for you HI) – if you are having more “AI”, then there’s the question of whether the additional apnea events is countering any positive effect that the Neurontin could provide.   While it could be heretical for me to mention this on SG, CPAP doesn’t seem to solve my excessive tiredness.  Probably because my other sleep problem is more of a difficulty than apnea.  But, since my sleep studies did show that in addition to extreme alpha intrusion which keeps waking me up throughout the night, I do also have OSA.  So, for the apnea events that CPAP prevents, it is good for my health even if I remain tired.  Oh, those lucky people who use CPAP and feel rested during the day !   

 

Since we seem to share similar experiences, I wonder if Gabitril would work for you.  For the short time that I took it – it was so wonderful – I thought it was a real cure !!! 

 

Thanks for your well wishes to me – and right back at ‘ya !  Wishing you success with Neurontin, etc . . .

 

All the best and lots of good rest,

Renee

 

_________________

Mary Callahan said:

 

Thanks, Renee for your getting back. Sorry to hear about your not being able to tolerate the Xyrem. What a shame. Oh how I loved taking Xyrem. The only RX that worked for me to help me sleep deeply and feel rested in the morning with absolutely no side effects. Only problem for me is that my insurance company stopped paying for it back in February saying I did not have narcolepsy -- never mind that they were paying for it for 6 years knowing I did not have narcolepsy.

Well now it costs $2700 a month and even with their deep discount of $1500, I cannot afford paying $1400 a month for the RX. Luckily I had a small stash of the stuff and taking it only 1x a night for 8 months, got me thru to almost October. Before my my passed in September she left me $2000 for a month's supply. What a godsend.

 

Now let's see what else I've taken: Elavil, Trazadone, Sinequin, and Ambien all for sleep years back before the Xyrem. All but the Ambienl made me drowsy (actually zombie like), but I never was able to sleep. The Ambien did not make me sleep either, but it did make me suicidal. I even used Neurontin way back then for the fibromyalgia, but it only clouded my brain. I was on a much higher dose back then, probably 1800 or 2400 mgs. I gave it up as it did nothing for the fibro and it didn't do anything for the sleep either.

 

So the doctor wanted to give me something to help me sleep at this point, so I felt I had to try something again. I thought maybe I was in a different place, and the medicines might affect me differently at this point. He said the neurontin might help with the constant arousals. He said I should start on a low dose since rxs don't agree with me. So I started on 62.5mgs (I am using the liquid so I can get the small dosing). I have worked my way up to probably 100mgs last night and I am afraid of going any further. And I am not sure it is really helping, and I was really tired today after thinking I slept okay last night. 

 

I have been on CPAP for about 5 weeks or so, and I feel miserable. I am so tired. I was hoping someone used the neurontin and had something good to say about it. Oh well, might be time to go back to the drawing board.


Thanks, again, Renne. Good luck with your gallbladder surgery, and hopefully you can get back on the Xyrem -- a real wonder drug if there ever was one!

Renee, Thanks for the post. First of all let me say, I did appeal the denial as many times as allowed, all the way to the state level. My guess is the state is paid by Oxford to agree with them, because no one would deny someone medicine that is their lifesaver. Xyrem did try to help my doctor by giving him papers that would back us up. But it did not help.

 

I keep waiting for FDA approval for Xyrem for Fibro, but I am not thinking it will be any time soon, as they said -- with 5 million people with fibro on the date rape drug, they just couldn't keep it under control. There are only about 150,000 with narcolepsy, so it is much more manageable. I often thought if they would charge a reasonable fee, and not the $2700/month more people could afford it. And there is absolutely no reason it should cost $2700/month, all it is is salt + water.

I am finding that after about a week of neurontin (even under 100mgs), my appetite is out of control, I want to eat 24/7. So i am thinking I will not be taking it anymore. I have gained some weight over the last 11 months due to not sleeping, I don't need to gain anymore. So perhaps some time tomorrow I will call my sleep doc and let him know. Depends if I can find the time.

I just changed doctors as my last one suggested I take RX, but would never prescribe it. He also complained that I called him too often. All I could say to him is that you are a sleep doctor and I need help sleeping.

So I want to give my new sleep doctor a chance, but if he doesn't help I may very well look into Dr. Bazil. Since I started with the cpap, I have had 98% central apneas (which only started with the machine). So I know something has to be done about that. Am hoping that the new doc when I see him in 2 weeks, will be able to give me some help. At the first meeting, I had only been on the cpap for a month, and he wanted to see the #s. He also wants me to bring him the card in 2 weeks so he can check the #s again. I guess if he sees I am still having centrals, he will send me for another sleep study to check it out. Time will tell.

 

I truly wished the CPAP would work. I truly wish the rx would work. But nothing yet. It is so disappointing. 

 

I think the only way we differ, Renee, is that you thought you slept well. Whereas I have never slept my entire life. I just didn't know I had a problem. I never knew I had insomnia, because I thought everyone slept crappy. After all you hear so many people complain how they did not sleep, and how tired they were. It wasn't until I saw an Ambien commercial that said; "Do you sleep thru the night, do you wake refreshed?" All I could think was, wow people do that?  It was only then I realized people actually sleep thru the night. I never knew I was supposed to. I probably never slept due to abuse and multiple traumas throughout my life. Complex PTSD my guess is. I don't know if I can ever train my brain to work correctly, I feel it is so damaged from all the trauma. But I keep trying. I keep hoping that someday I will actually sleep.

 

Thanks again for your suggestions and concern. It is much appreciated.

 



Renee said:

Hello Mary ~

 

Seems that you and I have come similarities between us – we both wake up throughout the night and we both can’t tolerate a lot of RX and we’ve both taken Xyrem – which is not very often prescribed.

 

I certainly agree with you about the problematic side effects of RX – Elavil, Trazadone, Sinequan and Ambien.  I haven’t taken them and wouldn’t because of the type of RX that they are – and, thank goodness, the excellent sleep doctor that I am seeing does not prescribe them.  And, I am so very sorry about the tremendous problem that you are encountering in not being able to take Xyrem because of your insurance company’s denial – more on that in a little bit.

 

I notice that you are in New York so I thought to let you know -- I had a great deal of difficulty finding a doctor who would provide any reasonable care for complex sleep problems.  My original sleep studies were at Columbia Presbyterian Medical Center Sleep Disorders Center at 168th Street, which is conducted in through their pulmonology department – and then at NY Sleep Associates which is, in a rather shady way, connected with NYU Sleep Disorders Clinic – both Columbia and NY Sleep Assoc. proved to be VERY poor experiences for me. 

 

But then I went to see Dr. Carl Bazil, Director, Division of Comprehensive Epilepsy and Sleep Center, Columbia University Presbyterian Medical Center, The Neurological Institute, 212-305-1742.  Columbia's Neurological Institute is a completely separate entity from Columbia's main hospital pulmonogy Sleep Study Center.  Dr. Bazil did not conduct sleep studies because I had already 4 prior to meeting with him but, even without his own sleep studies, his treatment of me has been so very, very good.  He is extremely knowledgeable about sleep studies, problems and RX.  I have visited with him a few times and he actually cares about sleep problems and his patients and his treatment in EVERY way has been EXCELLENT.  And, the entire staff at the Sleep Center of the Neurological Institute is also very, very good – from the initial contact through the person who makes appointments through Dr. Bazil’s nurse practitioner and, of course, Dr. Bazil, himself.

 

You probably know that not that many doctors can prescribe Xyrem but Dr. Bazil can.  I have done a ton of research and I can tell you that Dr. Bazil knows about ALL the possible sleep RX – and prescribes them in a logical and reliable order.  And as with, I expect, all sleep doctors, is also likely required by some law, to prescribe Xyrem last, after all else has failed. 

 Rock and I did a lot of research in order to try and find out the possible cause of my alpha intrusion because, as Rock so clearly and succinctly state it, one needs to figure out the cause of the alpha intrusion in order to resolve it.  – And, you already know the cause of your waking up throughout the night – because you have the most commonly known cause – Fibro 

 I think a lot like you.  I am always willing to consider that I might be, somehow, different than at a previous point in time and so I’m willing to consider a previous treatment.  Nuvigil is generally prescribed these days before Provigil and that was so for me but, whereas Nuvigil didn't work out for me, I am trying Provigil.  I did take Provigil in the past for a short while and it didn't work at that time, but it may be helping me this time - can't tell for sure yet - but it is possibly helping me. 

 About Neurontin, the 1st RX that Dr. Bazil, and most other sleep doctors, prescribe is Neurontin.  Seems to me that Neurontin is the only RX that some sleep doctors know about and prescribe.  And, although in my case Neurontin was not effective and it caused immediate, and a lot of, weight gain and I, too, had an increased # of apnea events – a lot of patients DO have success with it.  Surely take your time with increasing it, as you would with any other RX, is a good idea.  And Good Luck with it !

 

By the way, I have always through I slept exceedingly well at night – wow – was I surprised after I had my sleep studies to find out that, although I thought I was sleeping "ooh, so soundly" through the night that I wasn’t sleeping much at all !!!  Especially since you have fibro, you could be having the same experience.

 

For you and me, sure CPAP for apnea is important, but if we still aren’t sleeping due to another cause – we will remain tired !  As you are keeping track of the of your apnea events, particularly the “AI” (because the reading of “HI’s” can be too unreliable, although it’s good to have an ideal of the “trend” up or down for your HI) – if you are having more “AI” events, then there’s the question of whether the additional apnea events is countering any positive effect that the Neurontin could provide.  While it may be heretical to say this on SG, I haven't found CPAP to be helping me much with my excessive tiredness, but that's likely because I need an RX to counter my alpha intrustion.  Yet, since my sleep studies showed that I do have OSA, then CPAP can logically be figured to help somewhat.  Oh, those lucky people with OSA that are helped so much by CPAP !!! 

 

As we seem to share similar experiences, I wonder if Gabitril would work for you.  For the short time that I took it – it was so wonderful – I thought it was a real cure !!! 

 

Thanks for your well wishes to me – and right back at ‘ya !  Very best with your continued CPAP treatment and with having your doctor help you through this "trying to sleep" process.

 

All the best and lots of good rest,

Renee



Hello Mary ~

 

You’ve have surely done a tremendous amount of work regarding your RX and your health !  You applied all the way through the state – great effort on your part !  And you even got Xyrem’s support through your doctor – you did everything !    And you’ve kept up with the news that most people aren’t aware of regarding Xyrem and the FDA. Great Work !  Sooo very, very sorry you didn’t get approved through the “system” in the end. And I could NOT agree with you more about the unethical, immoral, unethical and I will say “criminally” astronomical cost of Xyrem – yes – it is salt & water !

 

On Neurontin, I gained weight even without extra eating – seems it affected me metabolically.

 

By the way, would you care to mention who your previous doctor was – and who your new doctor will be and what institution, if any, they are connected with? 

 

I don’t know about my central apneas – would have to have another sleep study to determine that and the doctor who I saw before switching to Dr. Bazil didn’t want to perform another sleep study for 3 more years.  I will be having future sleep studies through Dr. Bazil at The Neurological Institure but I don’t know when that will be.

 

I can understand your sense about being tired and thinking it is normal.  I, too, didn’t know that other people felt rested and it was only when my tiredness became debilitating that I had to try to get medical help.  It is interesting that you mention about PTSD . . . I think that may factor into my situation as well.  If no solution to my tiredness is able to be found through sleep RX and CPAP, I will likely then investigate CFA and sleep disorders which sometimes have a foundation in PTSD.  But that’s a whole other route that will take a lot of time, work and energy.  Given the difficulty I found in locating a good sleep doctor, I think finding a really good specialist in CFA connected with sleep disorders will be even harder to accomplish.

 

With all you’ve already gone through, in so many ways, and for how much you have already achieved in your life, I say, that I admire your efforts and courage – and I do, sincerely, wish for you success, sleep, rest and, justly deserved, peace.

 

My Best,

Renee


_________________


Mary Callahan said:

Renee, Thanks for the post. First of all let me say, I did appeal the denial as many times as allowed, all the way to the state level. My guess is the state is paid by Oxford to agree with them, because no one would deny someone medicine that is their lifesaver. Xyrem did try to help my doctor by giving him papers that would back us up. But it did not help.

 

I keep waiting for FDA approval for Xyrem for Fibro, but I am not thinking it will be any time soon, as they said -- with 5 million people with fibro on the date rape drug, they just couldn't keep it under control. There are only about 150,000 with narcolepsy, so it is much more manageable. I often thought if they would charge a reasonable fee, and not the $2700/month more people could afford it. And there is absolutely no reason it should cost $2700/month, all it is is salt + water.

I am finding that after about a week of neurontin (even under 100mgs), my appetite is out of control, I want to eat 24/7. So i am thinking I will not be taking it anymore. I have gained some weight over the last 11 months due to not sleeping, I don't need to gain anymore. So perhaps some time tomorrow I will call my sleep doc and let him know. Depends if I can find the time.

I just changed doctors as my last one suggested I take RX, but would never prescribe it. He also complained that I called him too often. All I could say to him is that you are a sleep doctor and I need help sleeping.

So I want to give my new sleep doctor a chance, but if he doesn't help I may very well look into Dr. Bazil. Since I started with the cpap, I have had 98% central apneas (which only started with the machine). So I know something has to be done about that. Am hoping that the new doc when I see him in 2 weeks, will be able to give me some help. At the first meeting, I had only been on the cpap for a month, and he wanted to see the #s. He also wants me to bring him the card in 2 weeks so he can check the #s again. I guess if he sees I am still having centrals, he will send me for another sleep study to check it out. Time will tell.

 

I truly wished the CPAP would work. I truly wish the rx would work. But nothing yet. It is so disappointing. 

 

I think the only way we differ, Renee, is that you thought you slept well. Whereas I have never slept my entire life. I just didn't know I had a problem. I never knew I had insomnia, because I thought everyone slept crappy. After all you hear so many people complain how they did not sleep, and how tired they were. It wasn't until I saw an Ambien commercial that said; "Do you sleep thru the night, do you wake refreshed?" All I could think was, wow people do that?  It was only then I realized people actually sleep thru the night. I never knew I was supposed to. I probably never slept due to abuse and multiple traumas throughout my life. Complex PTSD my guess is. I don't know if I can ever train my brain to work correctly, I feel it is so damaged from all the trauma. But I keep trying. I keep hoping that someday I will actually sleep.

 

Thanks again for your suggestions and concern. It is much appreciated.

Renee, my current sleep doctor is Dr. Patel at Weill Cornell Sleep Center at 60th & 1st. I started seeing him 12/29. Before that I went to a Dr. Avrim Gold out at Stonybrook in Long Island. He seemed good, but every time I called I got his associate a Dr. Mertzer (Sp?) and he was not so nice at all. He was the one who complained that I called too much. I only called 2x in 10 days, and it was the first 10 days I was using the CPAP and had questions. 

 

Question, what is CFA, and what does it have to do with sleep disorders? Don't think I am familiar with that term. 

 

And it seems Renee, that you have been through a lot and done a lot for yourself as well. Continued good luck.

Renee said:

Hello Mary ~

By the way, would you care to mention who your previous doctor was – and who your new doctor will be and what institution, if any, they are connected with? 

 

I don’t know about my central apneas – would have to have another sleep study to determine that and the doctor who I saw before switching to Dr. Bazil didn’t want to perform another sleep study for 3 more years.  I will be having future sleep studies through Dr. Bazil at The Neurological Institure but I don’t know when that will be.

 

I can understand your sense about being tired and thinking it is normal.  I, too, didn’t know that other people felt rested and it was only when my tiredness became debilitating that I had to try to get medical help.  It is interesting that you mention about PTSD . . . I think that may factor into my situation as well.  If no solution to my tiredness is able to be found through sleep RX and CPAP, I will likely then investigate CFA and sleep disorders which sometimes have a foundation in PTSD.  But that’s a whole other route that will take a lot of time, work and energy.  Given the difficulty I found in locating a good sleep doctor, I think finding a really good specialist in CFA connected with sleep disorders will be even harder to accomplish.

 

With all you’ve already gone through, in so many ways, and for how much you have already achieved in your life, I say, that I admire your efforts and courage – and I do, sincerely, wish for you success, sleep, rest and, justly deserved, peace.

 

My Best,

Renee


_________________



Hello! I am reading this coversation with great interest as I have the same problem. I wake up about every 1.5-2 hours, every night, and the addition of the CPAP machine has not helped, in fact, it causes some issues that wake me up during the night. I can't seem to get that part "fixed."

 

 I have not slept all night through in over 6 years now, and I just pray that I won't lose my mind from lack of sleep. I am unable to work because of this and because of what is causing this problem.  Anyways, I wanted to tell you what was contributed to my sleep malfunction. 

 

For me, it is adrenal and thyroid issues, which contribute to sleep apnea. I have tried all of the Rx sleep aids, and there was no relief from them. One day I was so desperate I took 2 Dalmane 4 times during the day for a total of 8, and it had no affect on my sleep pattern at all. My Dr was working with me trying to help me get some sleep, and one day I went into her office and asked her to just give me a shot of anything to "knock me out." I had someone to drive me home, she did, and I was awake and calling her after one hour. I said all of that, to say this, if the thyroid and adrenal gland are malfunctioning, then there is really almost nothing going to help with the sleep issue.  

 

And then there is the perimenopause factor, another GLANDULAR malfunction.  

 

It is very aggravating as trying to find a dr that is knowledgeable on the the thyroid and adrenal glands is next to impossible. I know I would LOVE to have a good nights sleep. 

 

Just wanted to share my sleep issue with you, and tell you that I know how horrible it is.

 

Peggy 

Peggy, I feel for you. Sorry to hear about your distress. I know what it is like. The only thing that worked was Xyrem, but the cost is now so prohibitive. But it was delightful while it lasted;I have been so spoiled to know what it was like to sleep and feel good the next day. 

Trouble with our broken sleep, is that I truly don't think there is anything out there that works. And the cpap seems to make it worse as it is just another thing that interferes with what little sleep we were able to get to begin with.

I truly wish there was someone out there who could help all of us. But in the meantime, I just keep trying and hoping.

Peggy McGalliard said:

Hello! I am reading this coversation with great interest as I have the same problem. I wake up about every 1.5-2 hours, every night, and the addition of the CPAP machine has not helped, in fact, it causes some issues that wake me up during the night. I can't seem to get that part "fixed."

 

 I have not slept all night through in over 6 years now, and I just pray that I won't lose my mind from lack of sleep. I am unable to work because of this and because of what is causing this problem.  Anyways, I wanted to tell you what was contributed to my sleep malfunction. 

 

For me, it is adrenal and thyroid issues, which contribute to sleep apnea. I have tried all of the Rx sleep aids, and there was no relief from them. One day I was so desperate I took 2 Dalmane 4 times during the day for a total of 8, and it had no affect on my sleep pattern at all. My Dr was working with me trying to help me get some sleep, and one day I went into her office and asked her to just give me a shot of anything to "knock me out." I had someone to drive me home, she did, and I was awake and calling her after one hour. I said all of that, to say this, if the thyroid and adrenal gland are malfunctioning, then there is really almost nothing going to help with the sleep issue.  

 

And then there is the perimenopause factor, another GLANDULAR malfunction.  

 

It is very aggravating as trying to find a dr that is knowledgeable on the the thyroid and adrenal glands is next to impossible. I know I would LOVE to have a good nights sleep. 

 

Just wanted to share my sleep issue with you, and tell you that I know how horrible it is.

 

Peggy 

Hello again Mary ~

 

Seems you chose 2 places in NY that are among the most reputable and reliable for sleep disorders – Stonybrook and, now, Weill Cornell.  It’s a shame after you made the trip out to Stonybrook on Long Island and were working well with Dr. Gold – that you were then dismissed out of fashion by Dr. Mertzter.  And, by the way, I think that calling 2x in 10 days, especially when 1st starting CPAP is not at all unreasonable.  That reaction would make me wonder if I was not going to get very much cooperation or help with my sleep problems overall.  So that could make me feel somewhat better about having to switch to a doctor elsewhere.

 

I don’t know about Dr. Patel at Weill Cornell but I see on his website that he is specializing in neurology but also has a background in pulmonology and OSA – so that’s sounds good.  Also, fyi, Weill Cornell has 2 different sleep study areas – at the Center for Sleep Medicine where Dr. Patel is – and, also, in an area called the Laboratory for Clinical Neuropsychology.  I don't know fully about the sleep centers at Cornell Weill but I understand that the sleep studies that the Center for Sleep Medicine conducts are more likely the run-of-the-mill pulmonological sleep studies, while at the Lab for Clinical Neuropsychology, they can, and will, conduct a more comprehensive full hook-up and arm sleep study - and all that’s required to get a more comprehensive study at the Laboratory for Clinical Neurossychology is for the referring neurologist to order the more complete sleep study. 

 

CFA is Chronic Fatigue Syndrome – here’s some info:

http://immunerecoverywellness.com/pdfs/cancer/CFIDS_Brain.pdf

http://journals.lww.com/smajournalonline/Abstract/1994/04000/Alpha_Delta_Sleep_in_Patients_With_a_Chief.8.aspx

http://www.fcclinic.com/about_cfs.html

http://www.nytimes.com/2009/10/13/health/13fatigue.html

http://bubl.ac.uk/archive/journals/jcfs/v05n0304.htm

 

All continued best to you,

Renee

 

 

_________________

Mary Callahan said:

 

Renee, my current sleep doctor is Dr. Patel at Weill Cornell Sleep Center at 60th & 1st. I started seeing him 12/29. Before that I went to a Dr. Avrim Gold out at Stonybrook in Long Island. He seemed good, but every time I called I got his associate a Dr. Mertzer (Sp?) and he was not so nice at all. He was the one who complained that I called too much. I only called 2x in 10 days, and it was the first 10 days I was using the CPAP and had questions. 

 

Question, what is CFA, and what does it have to do with sleep disorders? Don't think I am familiar with that term. 

 

And it seems Renee, that you have been through a lot and done a lot for yourself as well. Continued good luck.

Hello Peggy ~

 

I am fortunate to have found a really great endocrinologist and I was tested for every possible thyroid problem before I went for sleep studies and no problems were found.  In fact it was my endocrinologist who 1st recommended a sleep study.  Prior to that, in connection with thyroid, I did have to have brain surgery to remove a pituitary adenoma – a fast growing non-cancerous brain tumor.  So, there remains a little question in my endocrinologist’s mind about whether my thyroid could still be contributing somehow to my tiredness.  My endocrinologist is quite a detective – he thinks of everything.  But there’s not been enough study in the area of removal of pituitary adenomas and the thyroid and excessive tiredness.  And since my MRIs, thank goodness, have shown no return of the tumor, there’s no way to figure out if that earlier situation is a factor or not. 

 

I hope you will be able to find a specialist to help you in order that you can get some MUCH needed help. 

 

Best to you,

Renee


___________________


Peggy McGalliard said:

Hello! I am reading this coversation with great interest as I have the same problem. I wake up about every 1.5-2 hours, every night, and the addition of the CPAP machine has not helped, in fact, it causes some issues that wake me up during the night. I can't seem to get that part "fixed."

 

 I have not slept all night through in over 6 years now, and I just pray that I won't lose my mind from lack of sleep. I am unable to work because of this and because of what is causing this problem.  Anyways, I wanted to tell you what was contributed to my sleep malfunction. 

 

For me, it is adrenal and thyroid issues, which contribute to sleep apnea. I have tried all of the Rx sleep aids, and there was no relief from them. One day I was so desperate I took 2 Dalmane 4 times during the day for a total of 8, and it had no affect on my sleep pattern at all. My Dr was working with me trying to help me get some sleep, and one day I went into her office and asked her to just give me a shot of anything to "knock me out." I had someone to drive me home, she did, and I was awake and calling her after one hour. I said all of that, to say this, if the thyroid and adrenal gland are malfunctioning, then there is really almost nothing going to help with the sleep issue.  

 

And then there is the perimenopause factor, another GLANDULAR malfunction.  

 

It is very aggravating as trying to find a dr that is knowledgeable on the the thyroid and adrenal glands is next to impossible. I know I would LOVE to have a good nights sleep. 

 

Just wanted to share my sleep issue with you, and tell you that I know how horrible it is.

 

Peggy 

Renee, Oh I know about CFS but never heard it called CFA. CFS and FMS are so similar, or at least seem to share some very similar complaints. I had Epstein Barr for two years and the doctor kept insisting I had CFS. I told him I didn't want CFS since I already had FMS!! Like it really mattered. But at least I beat the Epstein Barr after two years. I will read your articles over the weekend when I will have more time. Tomorrow I have to take my daughter for surgery. Nothing serious. She is having triplets and they need to do some surgery to help her hold the babies in. So I need to get to bed early - like an hour ago! Thanks again for all your help, especially regarding the two sleep centers my doctor might be associated with. I am just hoping he will good and hopefully able to help me.
Good night and thanks again. Hope all goes well for you. It has been great speaking with you (and Peggy too), makes me feel less alone. Like someone else truly understands how horrible it is not to sleep deeply and for so long a time, too.

>Seems you chose 2 places in NY that are among the most reputable and reliable for sleep disorders – Stonybrook and, now, Weill Cornell.  It’s a shame after you made the trip out to Stonybrook on Long Island and were working well with Dr. Gold – that you were then dismissed out of fashion by Dr. Mertzter.  And, by the way, I think that calling 2x in 10 days, especially when 1st starting CPAP is not at all unreasonable.  That reaction would make me wonder if I was not going to get very much cooperation or help with my sleep problems overall.  So that could make me feel somewhat better about having to switch to a doctor elsewhere.

 

I don’t know about Dr. Patel at Weill Cornell but I see on his website that he is specializing in neurology but also has a background in pulmonology and OSA – so that’s sounds good.  Also, fyi, Weill Cornell has 2 different sleep study areas – at the Center for Sleep Medicine where Dr. Patel is – and, also, in an area called the Laboratory for Clinical Neuropsychology.  I don't know fully about the sleep centers at Cornell Weill but I understand that the sleep studies that the Center for Sleep Medicine conducts are more likely the run-of-the-mill pulmonological sleep studies, while at the Lab for Clinical Neuropsychology, they can, and will, conduct a more comprehensive full hook-up and arm sleep study - and all that’s required to get a more comprehensive study at the Laboratory for Clinical Neurossychology is for the referring neurologist to order the more complete sleep study. 

 

CFA is Chronic Fatigue Syndrome – here’s some info:

http://immunerecoverywellness.com/pdfs/cancer/CFIDS_Brain.pdf

http://journals.lww.com/smajournalonline/Abstract/1994/04000/Alpha_Delta_Sleep_in_Patients_With_a_Chief.8.aspx

http://www.fcclinic.com/about_cfs.html

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