Saw the Neurologist today

My husband finally got in to see the Neurologist today. So the neurologist started out by saying that my husbands sleep study was one of the worst ones he had seen. We had several questions about central sleep apnea and he pretty much said I don't know. When we asked him what test we should have done to see why this started he said well we ruled out medicine and we ruled out cardiac reasons so it has to be neurological. We asked him several times what kinds of test to find out what neurological conditions and he said well i can tell you by looking at him he doesn't have a neurological condition. So 15 min later of him constantly looking at the clock and being told you are fine, just always use the machine, he says you should come back in 4 months just in case something changes. The only good news was he looked through the sleepyhead reports and was very happy with the titration (pressure was started at 7 with ahi staying in the 20, changed pressure to 8 ahi staying in the 10 and and than changed pressure to 9 ahi 0 for a month now, starting ahi was 114) we had done on the machine and said for us to keep reviewing the date and if we see an increase or change that last more than week to adjust again. Neurologist also felt that something between his surgery and infection changed his breathing pattern, he felt since In the last month of asv use all cardiac symptoms have disappeared (tachycardia and high resting heart right and his high blood pressure are all back to normal) that this fit since before surgery he did not have these problems but post surgery and infection he a resting heart rate in the 120 and blood pressure that was in the 160-170/ 100-110. Just frustrated that the neurologist said just by looking at you i can tell you don't have a neurological condition.

Sounds like someone who's had no training in sleep medicine, certainly has no understanding of much at all. Not all doctors, let alone neuros, are created equal, and of course they specialize in backs, brains, etc. and sleep may just never have been on his radar. I'd look for someone else.

Well, that's both good and not-so-good news. I know you were looking for answers. Some on here with central apnea have said that there isn't always an answer. I don't know how you deal with that, how to process not having answers. A good neurologist can tell a lot just examining a patient in correlation with lab results. However, not everything is evident. I guess for now you could accept this and be glad he appears stable in other respects, keeping your eyes open for any symptoms that would suggest revisiting this. Or ask for a second opinion. Let us know how things go.

jeniburns1@gmail.com wrote:My husband finally got in to see the Neurologist today. So the neurologist started out by saying that my husbands sleep study was one of the worst ones he had seen. We had several questions about central sleep apnea and he pretty much said I don't know. When we asked him what test we should have done to see why this started he said well we ruled out medicine and we ruled out cardiac reasons so it has to be neurological. We asked him several times what kinds of test to find out what neurological conditions and he said well i can tell you by looking at him he doesn't have a neurological condition. So 15 min later of him constantly looking at the clock and being told you are fine, just always use the machine, he says you should come back in 4 months just in case something changes. The only good news was he looked through the sleepyhead reports and was very happy with the titration (pressure was started at 7 with ahi staying in the 20, changed pressure to 8 ahi staying in the 10 and and than changed pressure to 9 ahi 0 for a month now, starting ahi was 114) we had done on the machine and said for us to keep reviewing the date and if we see an increase or change that last more than week to adjust again. Neurologist also felt that something between his surgery and infection changed his breathing pattern, he felt since In the last month of asv use all cardiac symptoms have disappeared (tachycardia and high resting heart right and his high blood pressure are all back to normal) that this fit since before surgery he did not have these problems but post surgery and infection he a resting heart rate in the 120 and blood pressure that was in the 160-170/ 100-110. Just frustrated that the neurologist said just by looking at you i can tell you don't have a neurological condition.

Either you misunderstood the doctor or he didn't know what he was talking about...He can't set the AHI...he can only set the pressure. The AHI is the number of events that happen during the night while you are asleep. If your starting AHI was 114, that means thjat you had 114 events where you stopped breathing in an HOUR. Your challenge is to get that number under 5 by using the CPAP machine.

Yeah, Julie we are going to go to another neurologist I am going out of network and paying out of pocket to get a better dr. Actually this is the sleep doctor in my network and I was like this is bad. The only reason he actually saw us was my insurance was not going to pay for the machine so it was a consult to convince the insurance he needed the machine (i went and bought one out of pocket). but it still took 7 weeks to see him. So normally my group you do the sleep study they give you a machine in 5 weeks and you never see the doctor. There is no follow up or education about sleep apnea here its appalling

Sorry LSAT I wasn't very clear. When we had the pressure at 7 he was still having 20 AHI at night and when we bumped up the pressure to 8 his ahi decreased to 10ish and when we pushed the pressure up to 10 his ahi has stayed constently at 0.

kteague I think that is what bothers me the doctor never examined my husband he just sat in his chair and talked with us and the only lab workup was the cardiac and the sleep study. He only saw us because my insurance was not going to cover the ASV machine.

+1 for transparency! Doctors seldom say, "I don't know." It sounds like there are an AWFUL lot of variables that might contribute to your husband's problem, and maybe your neuro-Doc doesn't know enough about the totality of your husband's condition to know where to begin. And to be fair, neurologists don't usually do much in the way of physical examinations. Aside from looking at reflexes and listening to a patient's speech and noting their coordination, or lack thereof, there's not much a neurologist can do without ordering tests that likely won't be done in the office anyway.

Everyone is a specialist these days. The high pulse rate and blood pressure aren't there for no reason. Physical stress can affect breathing. Centrals can have several causes. But your neurologist knows that. Where's your cardiologist in all this?

On the other hand, it's clear that by incrementally raising the pressure, AHI dropped to 0, so at least that's as it should be.

I wish you success in getting some answers.

Slartybartfast. I trurly did appriciate the Dr being honest and saying he didn't know and him encouraging us to continue using the sleepy head program and giving us the thumbs up on self titration. Yeah he has a lot going on for sure. The nice thing is within 4 nights of being on the ASV machine his tachycardia was gone and now a month later his hypertension is gone. The cardiologist cleared him he could find nothing wrong with his heart that is why they recommended a neurologist the cardiologist felt his symptoms were strictly from the sleep apnea. I'm hoping with the other Neurologist he will at least run some test. The one doctor I work with did feel there was a strong chance that the central sleep apnea could have come from the fevers my husband had for a month and the infection in his surgical incision which took 2 months to close.

jeniburns1@gmail.com wrote: The nice thing is within 4 nights of being on the ASV machine his tachycardia was gone and now a month later his hypertension is gone.

That's good news that the ASV seems to have solved some problems. Keep us updated on what the new neurologist has to say.

The CAs may not be CAs. At least, my machine records as CAs any time my breathing pauses long enough, even though the vast majority of the CAs are while I'm actually awake. When I deduct those, I have almost no CAs. If the AHI is now zero, and the CAs are recorded during awake time, the doctor may be right. He's doing fine.

I'm a little concerned that you are seeing "0" AHI. It's NEVER "0" AHI. It might be zero point something, but if you are consistently seeing a flat zero that indicates that something is wrong and you may need to reset your machine. I have no idea how, but someone can come along and tell you. It would help if you included machine information in your signature.

jeniburns1@gmail.com wrote:Sorry LSAT I wasn't very clear. When we had the pressure at 7 he was still having 20 AHI at night and when we bumped up the pressure to 8 his ahi decreased to 10ish and when we pushed the pressure up to 10 his ahi has stayed constently at 0.

kteague I think that is what bothers me the doctor never examined my husband he just sat in his chair and talked with us and the only lab workup was the cardiac and the sleep study. He only saw us because my insurance was not going to cover the ASV machine.

Nobodys AHI stays constantly at zero. I agree with janknitz....you need your machine checked out. You might try pulling the plug...waiting a minute and then repluging. This should re boot the machine. I would still have the DME check it also.

Lsat my husband's machine is an aircurve 10 asv with pressure set at 9. Last night he had a ahi of 0.12 but the last 9 days it's been zero. I've read through the sleepheadreports myself every day and he is consistent there are times u can see he is starting and the machine kicks in but those stay about 9 seconds and are gone. His pressure averages about 12 on the reports. The machine was just checked out 3 weeks ago. Last night's central lasted 30 seconds.

My AHI is often zero for the night. I also get quite a few nights with readings between 0 and 1, so I know it's not just a "stuck" machine.

Am I correct in thinking that since the CPAP machine is so effective for this situation, that the problem is NOT centrals?