Replies to This Discussion

Permalink Reply by RockRpsgt on March 22, 2010 at 12:05pm

I am no doctor, or do I truly understand all of the meds at this point in my career. I know that side effects are based on averages from clinical trials. We all have different chemical make ups. I have seen meds completely wipe out N3 and stage REM sleep before. In others no effect what-so-ever. For me pain killers and muscle relaxers wipe me out. My wife on the other hand is not effected all that much by them. It is definately something to pursue with your doc as effective PAP should see a rebound in both of the stages you seem to be lacking. Someone with more experience than me might add more to this.

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Permalink Reply by RockRpsgt on March 22, 2010 at 12:10pm

How do you feel Renee? Your lack of deep sleep during the studies could be lab effect, or the inability to get completely comfortable in a lab environment.

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Permalink Reply by Renee on March 22, 2010 at 12:20pm

Hey, you guys ~

I’ve got a coupla’ questions . . . Rock you mention “depending on what is found in the PSG” and it seems that you mean that in the context of a PSG that a neurologist refers a pulmonologist to conduct. But since I’ve already had a sleep study and 3 titrations, how would that sleep study be different than the ones that I’ve already had? And why might a cardiologist get into the mix? You also mention that it would “all” depend on how well educated your PCP is in the characteristics of sleep and SBDs. What do you mean by “all”? By “all” are you referring back to meaning that it might not be necessary to bring in a cardiologist if the PCP knows their stuff ? And – what does are “SBDs”? By the way, I am fully confident that my sleep doctor, Dr. Burschtin, M.D., F.C.C.P., F.A.A.S.M., Dipl’ A.B.S.M., absolutely knows his stuff and definitely knows the characteristics of sleep and SBDs (whatever they are), etc. So, I am in good stead there.

So, do you think it would be a good idea for me to, perhaps, seek out another professional ? And, if so, do you think it should be a sleep neurologist ?

Thanks again,
Renee

Rock Hinkle said:

I think that the best situation for sleep would be a neurologist referral to a pulmonologist for a sleep study. This way both sleep and respiratory issues are covered adequately. Depending on what is found in the PSG a cardiologist might be brought in as well. It would all depend on how well educated your PCP is in the characteristics of sleep and SBDs. I have seen some family practitioners that really know their stuff.

Judy said:

And, Rock, do you think in this type of situation that a sleep neurologist might be a better choice than say a sleep pulmonologist?

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Permalink Reply by RockRpsgt on March 22, 2010 at 12:42pm

Renee if you are confident in your doc then by no means should you seek out another one. SBD are sleep-related breathing disorders such as apnea.

Judy and I always discuss sleep as it should be and not as it is. 3 major issues can be found through a PSG including but not limited to breathing, neurological, and cardiac disorders. In a perfect world a pulmonologist should be the best doc to handle SBDs and titration. The characteristics/architecture of good or bad sleep have been studied and argued by neurologist for alot longer than any other practice. Pulmonology did not get into sleep until the discovery of apnea, and the invention of PAP. If cardiac events are seen in a PSG or a history of cardiac problems are presented with bad sleep then a cardiologist should be consulted. heart problems, apnea, and bad sleep go hand and hand.

If your doc truly understands sleep then the need for any of these specialist may be not be as crucial. He will also understand the need to consult with any type of specialist. If you trust your doc go with his advice.

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Permalink Reply by Renee on March 22, 2010 at 1:00pm

Hey there, Rock ~

I did have real difficulty at the first lab I went to – where my first sleep study and first titration was conducted. However, I left that lab and started over at NYU and I feel I have been having a very good experience there.

A bit off the topic for the moment, but you might find this interesting . . . I had heard about Remzzzs – (you may know of Remzzzs – thin cotton pieces of material that are designed to match the shape of masks and meant to provide comfort between the mask and one’s face) – and I had taken some Remzzzs along to my titration at NYU. But since it was all new to me and I didn’t have experience with CPAP, I started out without thinking about using a Remzzz. However, I had difficulty going to sleep for a variety of reasons (as it goes at a titration) - including that the mask was very irritating and that, oddly, I got an awful headache - and after a couple of hours the tech came in to adjust the mask for leakage. I happened to ask the tech if we could try a Remzzz and the tech said: "Why not"?. And AS SOON as the Remzzz was in place - the mask felt so comfortable, my headache instantly went away by about 95% and the tech didn't have to make any adjustment for leakage. -- AND I, then, went right off to sleep ! Needless to say, I continue to use Remzees every night . . .

OK, back on track again . . . while I think I do have difficulty sleeping in a lab environment, it is not what the %’s and numbers and graphs from the sleep studies indicate that are my concern – it’s that the reason that I’m continuing to go for the sleep studies is because, although I am now using CPAP 7 nights a week and my events are substantially reduced, I remain extremely fatigued.

And that’s why I’m looking more so into finding any / all ways to investigate getting more SWS and REM

Thanks for all your interest and thoughts and suggestions with all this.

Best,
Renee


Rock Hinkle said:

How do you feel Renee? Your lack of deep sleep during the studies could be lab effect, or the inability to get completely comfortable in a lab environment.

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Permalink Reply by RockRpsgt on March 22, 2010 at 1:10pm

Has your doc considered an MSLT? One of the side effects of narcolepsy is reduced night time REM and fragmented sleep. People with this disorder tend to have very short sleep cycles. This could also produce chronic fatigue.

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Permalink Reply by Renee on March 22, 2010 at 1:27pm

Hello Rock ~

Thanks for this comprehensive and totally understandable reply. Since my doctor is such an expert in the field of sleep study, it may not be necessary to seek out another specialist. However, given all the valuable info you've provided, it is not completely out of the realm of consideration that a consultation with a sleep Neurologist couldn't be considered as a possibility - especially considering that I am now taking 200 mg Neurontin at bedtime - and, I didn't mention to you before because it seemed it would be too confusing - but I also take 25 mg of Topomax during the day for benign intention tremor - and Topomax is in the same classification of RX as Neurontin and, although my sleep doctor has knowledge of Neurontin being used to enhance SWS - I have discussed my RX issues with my doctors and none of them are particularly knowledgeable in how the mixture of RX in that classification of RX works in combination, that is, synergistically, etc. So I was thinking I'd have to visit with a regular Neurologist about that particular RX issue anyway - now I'm thinking maybe I might just go to see a Neurologist sleep specialist instead. You've given me something good to thing about. Thank you.

Best,
Renee

Rock Hinkle said:

Renee if you are confident in your doc then by no means should you seek out another one. SBD are sleep-related breathing disorders such as apnea.

Judy and I always discuss sleep as it should be and not as it is. 3 major issues can be found through a PSG including but not limited to breathing, neurological, and cardiac disorders. In a perfect world a pulmonologist should be the best doc to handle SBDs and titration. The characteristics/architecture of good or bad sleep have been studied and argued by neurologist for alot longer than any other practice. Pulmonology did not get into sleep until the discovery of apnea, and the invention of PAP. If cardiac events are seen in a PSG or a history of cardiac problems are presented with bad sleep then a cardiologist should be consulted. heart problems, apnea, and bad sleep go hand and hand.

If your doc truly understands sleep then the need for any of these specialist may be not be as crucial. He will also understand the need to consult with any type of specialist. If you trust your doc go with his advice.

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Permalink Reply by RockRpsgt on March 22, 2010 at 1:40pm

When dealing with sleep, or meds with mind altering charactersitics a neurologist is never a bad idea. A psychiatrist may also be helpful in your situation. Not that I think your crazy. They just have a pretty good understanding of these types of things. I would consult with your doc on this. trust is a 2 way street. If not consulted your doc may think you have lost faith in him. maybe allow him to refer you to someone.

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Permalink Reply by Renee on March 22, 2010 at 1:57pm

Hello Jeff,

I absolutely agree with you. My focus or emphasis was not on the amount of REM or SWS on the nights of my sleep studies. I was hoping that by using CPAP, I would get rested and energetic; however, after I was using CPAP successfully 7 nights a week and my events had dropped significantly, my sleep doctor had me come in for another titration because my 1st titration at his lab had shown such poor results and I remained completely exhausted and fatigued. Then, on the morning after the 2nd titration, he called me to advise that that I had, again, slept poorly and he asked if I would take Neurontin (gabapentin) at bedtime as a possible solution. He knew that I did not want to take any additional medication and had expressed trying neurofeedback instead; but, given my exhaustive state, I thought that the RX route would likely be quicker than neurofeedback and I agreed to try Neurontin – and I am doing that.

So, my emphasis is not on the SWS or REM because it showed up in results on the nights in the lab; but, rather because since even with CPAP showing significant results by definitely decreasing apnea events, my fatigue remains and the sleep specialist – not me – has determined that it is because I am lacking SWS and REM – and that it’s the lack of restorative sleep that’s my problem.

I think I’m OK on diet. However, my activity level is absolutely too low because I am completely exhausted. No real problem with pain. Stress, of course, is another matter . . . As far as being positive – that’s the best thing I have going for me – every night I continue to make plans for the next day – no matter that it’s been a long time now that those plans haven’t worked out. There’s always hope.

Best,
Renee

j n k said:

Even if a medication affects your amount of REM and SWS, it still may be best to use that medication, all things considered. BUT . . .

My 2 cents is that you may, just maybe, as Rock hinted, be putting too much emphasis on the amount of REM and SWS you happened to have the nights of your sleep studies. You may have had more of those stages in the nights preceding and following those studies. A sleep study is a one-night snapshot of your sleep. Variations in nerves and hormones can affect those things for males and females alike. Sleeping in a lab causes stresses and excitements and expectations that can show up in the sleep architecture of a study.

The idea is to get your PAP therapy as good as it can be. If you still have issues with your sleep, changes with your medications MAY be in order, if you can get your medical team to agree to systematically work with you on that sort of thing.

Diet and level of activity can play big roles too with REM and SWS. An overall healthy life-style with controlled stress is not possible to have perfectly, but the extent that we can get ourselves there can make a big difference. Controlling physical pain during sleep is good, but the experiences of the day, positive and negative, show up in our sleep as well.

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Permalink Reply by Renee on March 22, 2010 at 2:54pm

Hey Rock ~

Good ideas . . . I go to see a psychiatrist for therapy . . . I am probably the biggest believer in therapy in the world. In fact, he is also a psychopharmacologist. So my sleep doctor contacted him and they talked about Neurontin and decided that it would be best for my psychopharmacologist to prescribe the Neurontin so that my RX are being coordinated in one place – and this way the Neurontin can be monitored on a very regular basis for both positive and, possible, negative side effects. And, in this way, the dosage can be readily increased or decreased in a very effective manner.

Here’s the idiosyncrasy . . . my sleep doctor is concentrated in RX that affect sleep and my therapist is expert in the RX used in psychopharmacology; but, neither is steeped in the mix of Neurontin and Topomax – that’s a Neurologist’s bailiwick . . .

OK, now, another plus that I have is that my sleep doctor encourages communication from all the patients at the NYU sleep center. He gives every patient at the sleep center his email address and actually expects to hear from everyone – and I do keep in contact with him between appointments. I agree with you that trust is a 2-way street – and I also believe in being pro-active on my own account ! And, fortunately I have doctors who share my philosophy.

Thanks again for all your interest and sharing support.

Best,
Renee

Rock Hinkle said:

When dealing with sleep, or meds with mind altering charactersitics a neurologist is never a bad idea. A psychiatrist may also be helpful in your situation. Not that I think your crazy. They just have a pretty good understanding of these types of things. I would consult with your doc on this. trust is a 2 way street. If not consulted your doc may think you have lost faith in him. maybe allow him to refer you to someone.

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Permalink Reply by Renee on March 22, 2010 at 3:08pm

Hello Rock ~

My sleep doctor hasn't mentioned an MSLT . . .don't know if he has any plans for one. I'll probably be seeing him soon though and find out what he has in mind since he'll likely want to see me in person to go over the results of my last titration and discuss with me what he plans to do to help me. He wasn't happy with how things went at my last titration - and he seems to be the kind of doctor who is not satisfied to leave a problem unsolved.

Thanks for everything today - and wishing you ALL THE VERY BEST WITH YOUR EXAM ! ! !
Renee

Rock Hinkle said:

Has your doc considered an MSLT? One of the side effects of narcolepsy is reduced night time REM and fragmented sleep. People with this disorder tend to have very short sleep cycles. This could also produce chronic fatigue.

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Permalink Reply by Renee on March 22, 2010 at 3:49pm

Hello again Jeff,

Sure enough. I have spent the last 2 years lowering and / or stopping any RX that could possibly be making me tired. And RX that can help me be awake and alert, I take in the morning - which leaves just about nothing at night. Also, the combination of all my RX has also been taken into consideration. At this point, I am left with only one lingering question - and that is the Effexor XR . . .

I digress for a moment - because I had such major (their term is "florid") alpha intrusion, the NYU sleep center arranged for me to take a special neurological test before I started CPAP for a two-fold purpose - one, to find out, if they could, the underlying cause of the alpha intrusion and, secondly, they plan to follow-up in a year to see if CPAP has had any affect on the alpha intrusion. The result of the neuro exam was that my brain and neuro functions were in real good shape and there was no apparent reason for the alpha intrusion. That was all good news. However, the Neurological specialist, did strongly suggest that I stop taking Effexor XR. Also, my sleep doctor expressed concern, on at least 2 occasions, about my taking Effexor XR. Because of that, I talked with my therapist and lowered the dose to 150 mg.

And I continue to consider if it may be worth it to stop taking Effexor XR. It sure would be interesting to see what affect that would have on a future titration now wouldn't it ? Could take that mystery out of the mix one way or the other . . . And, how about if I got more SWS and REM, not only in the titration - but in REAL LIFE - now wouldn't that be a real kick - huh ?!?

I am very fortunate in having a very good doctor who is willing to negotiate with an extremely pro-active patient.

And, given that things are getting so much better with CPAP, I am looking forward to a correlation in other related areas.

Thanks for your further thoughts,
Renee

j n k said:

I'm no expert, but my guess is that getting medications figured out will be the key.

Many find that once their PAP therapy is optimal, the doc needs to consider lowering dosage. Or if you get tired with one drug, another similar one may not make you as tired. Or switching from one version of a drug to another, for example to an extended release version, can help. Changing the times you take medications can make a huge difference too.

The point is to keep chipping away at it constructively as you are doing. Be vocal to your medical team so the right drugs at the right dosages are being used.

jeff

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