cpap not enough to stop episodes of sleep apnea. whats next?

[mayur]

my father(57) is having OSA for last 3 year but he started using cpap this february and he has cerebellar atrophy symptoms from last november(2011) , he has co-ordination problem in walking and speech vocal problems and snoaring , dream enactment are because of OSA. and there is serious respiration problems after using cpap.

Its been 8 months using apap.

The only treatment my father is getting is just the apap and a doze of clonazepam 0.5mg but there is no improvement through this treatment neither in OSA nor in cerebellar atrophy

now is there any alternative to this or i have to stick with this clonazepam ?

[nanwilson]

Mayur
I would be talking to his doctor if I were you...he may indeed need a more sophisicated machine, such as asv or vipap. Drugs are not always the answer to a problem, his sleep doctor should be involved if he is still having problems with his apap after 8 months.
Good luck
Nan

[chunkyfrog]

Definitely consult the doctor; this does not sound like a DIY or cloud solution.

[kteague]

You are not the only family member who posts here in an effort to get find solutions for a loved one. It can be a bit of a task to work through the troubleshooting options, but this board is great for helping with that. How much followup has he had with his doctors on his CPAP treatment? Sounds like his case may need more attention than routine OSA.

One of the first steps is confirming that his CPAP treatment is indeed theraeputic. What are the doctors doing to assess his ongoing treatment? Wouldn't want to try to recreate the wheel. What "serious respiration problems" did your father have after starting CPAP? And what is the Clonazepam prescribed for?

CPAP can't fix everything that can go wrong with a body and a brain, but it can make a difference in even those things it can't fix. Adequate oxygen, reduction is stress hormones, and restorative sleep are good for every body. Once you confirm that those goals are consistently achieved for your father, then you can see if/what residual symptoms need addressed. He's fortunate to have someone like you to advocate for him. Best wishes.

[archangle]

What APAP machine does he have, and is anyone checking the data from his machine?

[mayur]

Mayur
I would be talking to his doctor if I were you...he may indeed need a more sophisicated machine, such as asv or vipap. Drugs are not always the answer to a problem, his sleep doctor should be involved if he is still having problems with his apap after 8 months.
Good luck
Nan

the machine he is using is resmed s9 escape, they want to increase the dose of clonazepam to 0.75mg can it make a difference.

[mayur]

You are not the only family member who posts here in an effort to get find solutions for a loved one. It can be a bit of a task to work through the troubleshooting options, but this board is great for helping with that. How much followup has he had with his doctors on his CPAP treatment? Sounds like his case may need more attention than routine OSA.

One of the first steps is confirming that his CPAP treatment is indeed theraeputic. What are the doctors doing to assess his ongoing treatment? Wouldn't want to try to recreate the wheel. What "serious respiration problems" did your father have after starting CPAP? And what is the Clonazepam prescribed for?

CPAP can't fix everything that can go wrong with a body and a brain, but it can make a difference in even those things it can't fix. Adequate oxygen, reduction is stress hormones, and restorative sleep are good for every body. Once you confirm that those goals are consistently achieved for your father, then you can see if/what residual symptoms need addressed. He's fortunate to have someone like you to advocate for him. Best wishes.

thanks for your interest. can we think of bipap doctors want to increase dose of clonazepam to 0.75mg.

[avi123]

In july 5th you posted about your Dad's situation. John Fisher has a similar problem.
IMO, your best bet is to PM John and ask your question.

viewtopic.php?f=1&t=79622&st=0&sk=t&sd= ... cerebellar

[signal20gsxr]

Just listing my experience with clonazepam and other medications I have taken.

I am finding its pretty scary what doctors do not know about medications. I have been on three different benzo's. I could not tolerate clonazepam. If you do some research on clonazepam there is research done by doctors showing it essentially lowers serotonin levels. Other benzo's don't do this and others like xanax will increase things like dopamine and other neurotransmitter levels when taken at low dosages. Clonazepam and most benzo's are also known to mess with delta waves and do not allow you get into deep sleep. My Psychiatrist was unaware that "clonazepam decreases the utilization of 5-HT (serotonin) by neurons" I printed out the info I had found on it and showed it two her.

Only 5% of serotonin is used as a neurotransmitter in the brain. The other 95% is in different systems throughout the body and is why I believed I could not tolerate it. I was given it to counter act the side effects of getting of SNRI's. I currently take ativan to help me sleep but this can be bad because all benzo's are respiratory depressants.

Everybody reacts differently to medications. So its tough to say what will work, how well and what side effects it will have. Example for me xanax is not sedating at all. Yet the equivalent dosage of clonazepam will make me pass out.

Has he had a tritation study done? As archangel mentioned are you able to read any data from the XPAP machine? What about a oximeter that is able to record data all night. For me when my O2 levels get below 94% my brain starts doing weird things. I will start dreaming before I have even fallen asleep.

Good luck in getting things figured out.

[lazer]

Just listing my experience with clonazepam and other medications I have taken.

I am finding its pretty scary what doctors do not know about medications. I have been on three different benzo's. I could not tolerate clonazepam. If you do some research on clonazepam there is research done by doctors showing it essentially lowers serotonin levels. Other benzo's don't do this and others like xanax will increase things like dopamine and other neurotransmitter levels when taken at low dosages. Clonazepam and most benzo's are also known to mess with delta waves and do not allow you get into deep sleep. My Psychiatrist was unaware that "clonazepam decreases the utilization of 5-HT (serotonin) by neurons" I printed out the info I had found on it and showed it two her.

Only 5% of serotonin is used as a neurotransmitter in the brain. The other 95% is in different systems throughout the body and is why I believed I could not tolerate it. I was given it to counter act the side effects of getting of SNRI's. I currently take ativan to help me sleep but this can be bad because all benzo's are respiratory depressants.

Everybody reacts differently to medications. So its tough to say what will work, how well and what side effects it will have. Example for me xanax is not sedating at all. Yet the equivalent dosage of clonazepam will make me pass out.

Has he had a tritation study done? As archangel mentioned are you able to read any data from the XPAP machine? What about a oximeter that is able to record data all night. For me when my O2 levels get below 94% my brain starts doing weird things. I will start dreaming before I have even fallen asleep.

Good luck in getting things figured out.

Thanks for the info regarding Clonazepam. I've been switched from long-term xanax dosage to .5mg Clonazepam 3x daily as a step down effort from the benzo's due to some of the very things you mention above. This pisses me off a little about the reduced serotonin (5-HT). Doc of course didn't address this at all even when I told him part of my long on going battle is with my sleep stages not progressing into the later stages (Restorative). I'm wondering if I should start taking my 5-HTP supplement again in the evenings to counteract this. I used to take it when on xanax about a year ago for sleep aid and it worked for about a month then the effects seemed so diminished, I discontinued it.

[signal20gsxr]

lazer. The more research I do on my own the more I find out how little doc's know. Its frustrating to put it mildly.

I too was taking Clonazepam .5mg up to 4 times a day for a short period of time. I could not function. I was not diagnosed with sleep apnea at the time (even though I had it) and it messed me up. For me it would take 1-2 hours to be fully metabolized then its like my brain would just stop working. I don't know how else to describe it. I was conscious but I could not think or process any information. It was like a level of extremely low brain activity. I rather deal with panic attacks than feel like that.

Xanax for me takes 5-10 minutes at best to start working and as mentioned does not make me sedated. Ativan does make me tired but nothing like Clonazepam. I have never tried Valium but it has a very long half life, longer than Clonazepam, but also has a quick onset of action. Although nothing is as fast as xanax that I am aware of. I think valium would work better than ativan for me. The problem I have is that my fight or flight system has been so active for years while I am sleeping from sleep apnea (which its not supposed to be) its completely screwed up! The best way I can describe how I feel is if your in a car and its in gear and your standing on the brake and gas pedal at the same time. The car is sitting there smoking the tires but its not going anywhere.

I was on xanax for 8 years then I moved and could not get it prescribed for almost 4 years. Initially It was prescribed to take as needed for panic attacks. Which it worked great for. The sedating effects of xanax we become tolerant to very quickly but its still doing its job. Xanax also used to be prescribed for nausea. Also out of all of the benzo's its the strongest HPA-axis antagonist (hypothalamic-pituitary-adrenal axis). This system regulates all sorts of functions from stress response to digestion. Here is a short article on the HPA axis. http://chronicfatigue.about.com/od/cfsg ... a_axis.htm

5-HTP I could not tolerate at all. I have read both good and bad things about it. Tryptophan works ok for me if I do take it but I can only tolerate 100mg not 300 or 500mg that they sell it in. I decided to stop taking anything that messes with serotonin production after being on SSRI and SNRI for close to 14 years. I want to give my body a chance to produce and regulate it on its own.

I know my body better than anyone and what I can and can't tolerate and most doctors I have seen still want to do things their way. I know how addicting benzo's can be. However if anyone has ever been on other medications they prescribe like SSRI's SNRI's Anti seizure, anti psychotics, etc long term (like 10 or more years) they all have just as bad (and is some cases worse) of withdrawal symptoms. Plus most of these other medication have many more side effects. Seroquel gave me diabetes, Astigmatism along with chronic eye pain and Priapism. However these meds are not considered addictive and safer!!!!

Hope I didn't hijack the thread. If you want to PM me with any questions lazer feel free to.

[mayur]

lazer. The more research I do on my own the more I find out how little doc's know. Its frustrating to put it mildly.

I too was taking Clonazepam .5mg up to 4 times a day for a short period of time. I could not function. I was not diagnosed with sleep apnea at the time (even though I had it) and it messed me up. For me it would take 1-2 hours to be fully metabolized then its like my brain would just stop working. I don't know how else to describe it. I was conscious but I could not think or process any information. It was like a level of extremely low brain activity. I rather deal with panic attacks than feel like that.

Xanax for me takes 5-10 minutes at best to start working and as mentioned does not make me sedated. Ativan does make me tired but nothing like Clonazepam. I have never tried Valium but it has a very long half life, longer than Clonazepam, but also has a quick onset of action. Although nothing is as fast as xanax that I am aware of. I think valium would work better than ativan for me. The problem I have is that my fight or flight system has been so active for years while I am sleeping from sleep apnea (which its not supposed to be) its completely screwed up! The best way I can describe how I feel is if your in a car and its in gear and your standing on the brake and gas pedal at the same time. The car is sitting there smoking the tires but its not going anywhere.

I was on xanax for 8 years then I moved and could not get it prescribed for almost 4 years. Initially It was prescribed to take as needed for panic attacks. Which it worked great for. The sedating effects of xanax we become tolerant to very quickly but its still doing its job. Xanax also used to be prescribed for nausea. Also out of all of the benzo's its the strongest HPA-axis antagonist (hypothalamic-pituitary-adrenal axis). This system regulates all sorts of functions from stress response to digestion. Here is a short article on the HPA axis. http://chronicfatigue.about.com/od/cfsg ... a_axis.htm

5-HTP I could not tolerate at all. I have read both good and bad things about it. Tryptophan works ok for me if I do take it but I can only tolerate 100mg not 300 or 500mg that they sell it in. I decided to stop taking anything that messes with serotonin production after being on SSRI and SNRI for close to 14 years. I want to give my body a chance to produce and regulate it on its own.

I know my body better than anyone and what I can and can't tolerate and most doctors I have seen still want to do things their way. I know how addicting benzo's can be. However if anyone has ever been on other medications they prescribe like SSRI's SNRI's Anti seizure, anti psychotics, etc long term (like 10 or more years) they all have just as bad (and is some cases worse) of withdrawal symptoms. Plus most of these other medication have many more side effects. Seroquel gave me diabetes, Astigmatism along with chronic eye pain and Priapism. However these meds are not considered addictive and safer!!!!

Hope I didn't hijack the thread. If you want to PM me with any questions lazer feel free to.

thanks a lot, this was helpful now according to you which alternate i should suggest to my doc.

[jen4700]

I think before you change medications, you should ask that your father's machine be changed. The ESCAPE does not provide therapy data (just hours of use). I would ask for a Resmed S9 Autoset. Or even better S9 VPAP. Once you can see his daily data on AHI and leaks, etc. then you'll be able to have more info to make a sound decision.

[signal20gsxr]

I think before you change medications, you should ask that your father's machine be changed. The ESCAPE does not provide therapy data (just hours of use). I would ask for a Resmed S9 Autoset. Or even better S9 VPAP. Once you can see his daily data on AHI and leaks, etc. then you'll be able to have more info to make a sound decision.

I also think this is a much better idea to do first.

As far as recommendations on what other benzo might be better I really have no idea. I just know what works and doesn't work for me through trial and error. Clonazepam was the worst one that I could have taken for SSRI discontinuation syndrome since it lowers serotonin levels even more. I don't understand why they are prescribing one to begin with. From my understanding all benzo's are respiratory depressants. Maybe ask exactly why they are prescribing it. Here is a link for all of the benzo's, therapeutic use, half life, etc. http://en.wikipedia.org/wiki/List_of_benzodiazepines