Midifinol, Melatonin and CPAP and Autistic

[Danlo67]

Hi all

I have a bit of an odd one here.
I have been on a Dreamstation with a wisp mask and heated humidifier for about 18 months now.
I have been diagnosed as Severe Sleep Apnea with Hypersomnia
I finally got approved for midifinol funding after 4 sleep studies (2 of them were the 48 hour ones where you're supposed to have 4 naps after sleeping 6 hours the previous night).

At my last appointment with my sleep specialist (a different one every time unfortunately) she asked if I felt the medication was helping and I basically said NO as my daytime drowsiness had not changed at all. I told her I am autistic and showed her my autism diagnosis report which specifically states that my previous bouts of clinical depression and anxiety are due to undiagnosed autism and should not be regarded as a mental health issue. She refuses point blank to put me on an amphetamine and told me to stop with medication full stop.

I did that about a month ago and I have noticed that the severe afternoon yawn have started all over again. that is about the only effect the meds were having, pretty much stopping the afternoon yawns but they have had zero effect on my alertness and during the day. I guess the combo I am on having at least a minimal effect but would expect more from a full dose of midifinol and 2mg of melatonin at night.

Any ideas?

[harryd91]

Just to be clear did you mean modafinil (i.e. provigil)? If so I have used it myself to little real effect. Keeps me awake but doesnt do much to kill the tiredness. Also made me quite highly strung and led to some depression.

Your bio says you are using APAP but with fixed pressure at 13? Im no expert (have not used dreamstation brand) but I think a lot of people here would question why you arent using it on auto? If you are still tired you are probably experiencing periods in your sleep where a higher pressure is necessary to keep your airways open.

If your machine is capable of providing data you should probably post some screenshots from OSCAR or SleepyHead if you are able. There is some information elsewhere on the forum as to how to do this. From there im sure somebody with a bit more knowledge than me could give you some pointers

[Danlo67]

Yes. Modifinal. It's an APAP and it is not allowed to be changed from 13cm. I've discussed this many times with my sleep specialist and they refuse to do auto. I can change it myself. I know how to but just not allowed since my AHI is maintained at between 2-5 but I have had a few episodes 14-16. I was diagnosed with 46 and was scripted with 6cm which was an absolute joke

[Julie]

You say "not allowed", but while in the U.S. consequences might be that insurance will no longer cover your machine if you make pressure changes yourself (tho' in fact insce co's don''t actually care about those), where you live there shouldn't be that problem and if your doctor says 'not allowed' because of his ego, I would ignore him... there are no Cpap police! We all change our pressures routinely to adjust things when needed and without us patients, doctors would have no income! Unless you have a modem that transmits data to the doctor, how will they know if you experiment anyway? Of course doctors here occasionally get upset when we dare to get involved in our OWN treatment, but that is just too bad... and if necessary we change doctors.

[Danlo67]

I wish it was that easy. If I change it myself I will have to give it back. I get it for free on that condition otherwise I can buy my own machine for about $2500 and I most definitely don't have that much money hidden under my pillow. Why they set that rule I have absolutely no idea.

[babydinosnoreless]

I wish it was that easy. If I change it myself I will have to give it back. I get it for free on that condition otherwise I can buy my own machine for about $2500 and I most definitely don't have that much money hidden under my pillow. Why they set that rule I have absolutely no idea.

Are you in the US ? If so its likely they are lying to you. Find a different sleep clinic. Our insurance usually only cares about compliance not pressure. Call your insurance company, they will tell you the rules. If you are outside the US tell us where. We have users in england and canada that can likely tell you how to get around their rules.

Btw through my insurance my machine was about $2500. I bought a back up machine without insurance for about $500 for the same machine, low hours slightly used. Here in the U.S. its a money making racket for the dme's. Cut out the middleman and save a fortune.

[chunkyfrog]

The OP's avatar suggests Australia.
Is that correct?

[Danlo67]

Yes folks. I'm an Australian. Things work way differently here than the US.

[D.H.]

The machines operate the same way on either side of the ocean and either side of the equator! It is possible to change the settings, though I can't say what the consequences are down under.

In the U.S. you're no "supposed to" change the settings, but I never heard of anybody losing the machine for doing that.

[Roman2007]

The machines operate the same way on either side of the ocean and either side of the equator! It is possible to change the settings, though I can't say what the consequences are down under.

In the U.S. you're no "supposed to" change the settings, but I never heard of anybody losing the machine for doing that.

From my understanding it is because when the Doctor looks at your data, he or she is going off the thought process that the settings are what were adjusted by his office technician and not you the patient. When it is changed the data is no good because those setting are from the latest sleep test that was done. I was in the same boat and I switched Doctors and got better results. If you change your machine you are causing harm to your data, it is virtually no good because the Doctor purposely had it set by the data received from your sleep test. I began Modafinal a month ago, one of the side effects to look out for is mental depression, anxiety, and rapidly changing moods. That's why your Doctor told you to stop taking the drug, especially if you are already taking other medication, it doesn't mix well with others. I switched Doctors and now I'm doing much better, every time I went it was a different young Doctor who couldn't even take correct notes. Do not change your setting, that is universal, all specialist will tell you not to change it yourself. After my last sleep test my Doctor had mine adjusted to a higher setting. -Do ruin the data-

V/r

[D.H.]

The machines operate the same way on either side of the ocean and either side of the equator! It is possible to change the settings, though I can't say what the consequences are down under.

In the U.S. you're no "supposed to" change the settings, but I never heard of anybody losing the machine for doing that.

From my understanding it is because when the Doctor looks at your data, he or she is going off the thought process that the settings are what were adjusted by his office technician and not you the patient. When it is changed the data is no good because those setting are from the latest sleep test that was done. I was in the same boat and I switched Doctors and got better results. If you change your machine you are causing harm to your data, it is virtually no good because the Doctor purposely had it set by the data received from your sleep test. I began Modafinal a month ago, one of the side effects to look out for is mental depression, anxiety, and rapidly changing moods. That's why your Doctor told you to stop taking the drug, especially if you are already taking other medication, it doesn't mix well with others. I switched Doctors and now I'm doing much better, every time I went it was a different young Doctor who couldn't even take correct notes. Do not change your setting, that is universal, all specialist will tell you not to change it yourself. After my last sleep test my Doctor had mine adjusted to a higher setting. -Do ruin the data-

V/r

If you do change the settings yourself, you should look at your own stats. You can use OSCAR, the manufacturer's app, of look at the numbers on your display. The doc put me on 13, based on the lab results. Based on trial and error, I found that a min of 13½ was best.