A helpful medication for anyone who suffers from sleep apnea caused by PSP.

[JudyJ]

I'll try to give a brief summary regarding how my apnea came about...My Neuro recommended a sleep study to confirm or toss out this diagnosis. I thought he was nuts. Believed I slept fine. In fact, I take a sleep-aid at bedtime. Also, I'm a slender person. Believed this mainly affected persons who are overweight; I have several older relatives in this situation.

Turned out I have severe sleep apnea. Had an event every 30 seconds all night long.

The testing was very specific. The majority of my apnea events are caused my autonomic nervous system...meaning the brain telling the heart when to beat, when lungs should take a breath, etc. Also involved my central nervous system. Only 10 percent of the events were obstructive; still have my tonsils, adenoids, deviated septum.

My Doc explained my apnea was for sure a consequence/complication of my PSP, and not that uncommon, since PSP does damage our nervous systems along the way.

I've been using a C-PAP machine since last summer, full-mask, etc. Still have events but they are down quite a bit.

However, I still felt tired, tired, exhausted, and more tired everyday. Surely the PSP can cause this all by itself. Add in apnea and it's a bulls-eye for severe fatigue.

I had enough of it, so early this year, my Doc prescribed a medication called "Modafinil". It is only prescribed to persons with sleep apnea and narcolepsy.

I was very hesitant to start it since it is a stimulant, designed to keep you awake. And he did say it may cause increased anxiety, which I already struggle with.

But, a month ago, I started it. WOW is all I can say. It's improved the quality of my life by a lot, truly. And, I don't have adverse affects such as an increase in anxiety, don't feel 'jittery', 'hyper', and it doesn't interfere with my sleep at night or what time I go to sleep at night.

What ever is in this med, is just the right combination of stuff. I feel more alert, a lot less tired, which also results in elevating my mood.

Cautionary tale, tho...Modafinil is a generic. It wasn't covered by my insurance and the retail price was approximately $850. Talk about sticker-shock. Since then, all the necessary paper-work was done to get it covered by my provider, but have a hunch, based on the retail price, my co-pay will be hefty. But, it really is worth it.

If this information helps even one person out there, I will be happy. The mind-numbing fatigue I lived with, I don't want for anyone. Living with PSP is tough enough.

[Hidden]

thanks for sharing xxx

[JudyJ in reply to Hidden]

Your welcome

[nastynorm in reply to JudyJ]

hello judy j my name is norm living in florida. My wife has all the same problems you have. Never tested for a sleep didorder. Severe anixety, sleeps about four hrs a night. I found her on the bathroom floor at 1.07 am after a hard fall. She thought it was 7am got up to do he moring makeup still all druged up from sleep aids and anixety meds. The time i got back to bed she fell again to much sleep aids. She is dealing with the psp allright. It's the lack of sleep and anixety that is realling killing her. She has tired 30 or 40 different anti anixety meds noting works. She is killing the both of us. The doctors are giving up on her. Where to go i'm lost. The doctors are all gussed out. I'm mad as hell at her nuro and her shrink. Glad you got some releif

[JudyJ in reply to nastynorm]

Wow. I sincerely feel your frustration and sense of no direction.

I know I'm oversimplifying this and it's tedious to reinvent the wheel (understated) but if you believe her doctors are giving up on her, it's time for fresh sets of eye.

I understand the frustration of finding new docs, record retrievals, and than the usual 2 month or so to get in a new door, but it must be done.

Because the doctors are giving up on her, doesn't mean you have to.

When I said I didn't think I had sleep issues, it was meant more in the spirit of I got used to my sleep patterns. I thought it was my hard-to-deal with anxiety, when in fact in was the numerous times during the night I stopped for beathing during the night. The natural consequence is waking up very unrested, even more anxious, and exhausted.

Or go back to your current Docs and insist on a sleep study. Tho it can be uncomfortable, with these complicated disorders, it's necessary to be the 'squeaky wheel'.

Perhaps apnea isn't part of the problem, but it's sure worth looking into since it can be a complication of PSP. If so, C-PAP therapy alone can increase her quality of life-and your's-as well as possibly the use of a medication like Modafinil for persons with apnea and narcolepsy.

BTW...I just picked my first refill, and after my Doc got it covered by insurance, from an $850 retail price, I was more than happy to find out the copay brought it down to $15.

I'm not a pro-medication advocate. However, I am a pro-quality of life person. And with PSP that's about what we have left to shoot for. So if there aren't harmful side effects, I've changed my position and go for it. The positive results, at least for me, are so worth it.

Advocate hard for her. When you push back...and sometimes back again...things get done. It sucks we have to do that, but it's the system that's broken, not us. Don't let it break you. Or her. Keep going.

And keep posting; want to know how things evolved.

Best of wishes for both of you.

Judy

[nastynorm in reply to JudyJ]

you must be in early stages of your PSP, your typing is close to normal. You type better then me. I was going to find a new nuro. I have made some calls. The hard thing is to find someone within 50 miles who has dealt with PSP before. I will keep you posted on any up dates. Thanks Judy for your insight. Norm

[jimandsharynp]

JudyJ, My wife has the opposite experience. Before diagnosis with PSP she would stop breathing at night (I could tell) and was diagnosed with Apnea after the usual testing. Given the machine to correct it. Slept with the machine for some time but couldn't take it so stopped. Now with PSP she sleeps fine with no stops in breathing during the night. I posted a while back to ask if anyone else had that experience once diagnosed with PSP (Apnea decreased or disappeared). No responses. Maybe it's the point she is at in PSP versus where you are at this time. Interesting! Jimbo

[JudyJ]

Missed your post. Very curious indeed. Huh.

[peterjones]

hi judy good to see you back with interesting information take care im watching you but have ad nothing to watch over these last few months peter jones queensland australia psp sufferer and sleep apnea bloke complete with mask

[JudyJ in reply to peterjones]

I've missed you Mr. Jones, complete with a face mask...

[peterjones in reply to JudyJ]

well thank you miss judy although ive just gone from phantom of the opera full mask down to a smaller neater one just covers my nose and mouth [ who said that's a good idea ] but the price was exorbitant

for one little mask it was 299 dollars but I got 10 percent off because I asked if I had not have said anything about anything off for seniors I would have paid full price for it because the young lady that sold it to me was not very forthcoming with her information and also went to my insurance provider to get a refund or at least a few bob back they told me the mask was not covered it was a replacement I thought that's bloody

great that is but I have got to wear it\\\\\\ the cost I mean\\\ how have you got on with your gear ok I hope peter jones queensland Australia psp sufferer