Saying Hello and Checking In

I haven't posted much lately because everything is about the same. I still do NOT have a new appointment with the sleep neurologist. I haven't heard anything from them but do know they have my records.

The half benedryl was working fairly well allowing me to sleep through the pressure increase (I still have the maximum set at 17) but I started waking up again about a week ago. I am now taking a full benedryl. I'm really not sure if it's helping that much, but one thing I DO know for sure is that my afternoon naps are turning into all afternoon sleep fests. I am sleeping 6-8 hours at night, then "napping" for anywhere from 3-5 hours every afternoon. I'm getting a few hours in the morning and a few hours after dinner, but other than that, I am sleeping.

During one of my naps, I set the maximum IPAP higher just to see how high it would go. It never got higher than about 19 before I woke up. I remember my doctor making a comment about how the I didn't spend much time at higher pressures, which I accepted at the time. I realize now that, well duh, I'm waking up and once I wake up, the pressure starts immediately backing down.

Yesterday, I decided I was NOT going to lay down and tried everything I could to stay up and awake. I sat in my chair, but fatigue took over and I dozed off (without the machine unfortunately) until my family got home and woke me up about 30 minutes later. I felt awful and was about as cranky as I've ever been.

Pain has become a serious issue, especially in my left leg/thigh. It feels like it's the muscle and I will address it with my regular neurologist this Friday at my regular appointment. I'm pretty sure it's contributing to the sleep disruptions.

I AM being good and continuing to use the ventilator every night, despite the fact that I still feel like I sleep more soundly without it. I KNOW that I cannot breathe easily without it and also know that I stop breathing completely without it. So, NOT using it isn't an option.

I am very, very frustrated with the need to nap, especially for that length of time every day, but will address all of it with my neurologist (regular) on Friday. Maybe his seeing me and talking to me in person may prompt him to try to do something with the other neurologist more quickly.

Perhaps your napping is your bodies way of repaying your sleep dept from all the time you were having problems sleeping at night.

The pain needs to be addressed. Hope you can figure that out.

I can't believe you still haven't had your doctors appointment... (sadly shaking head)

Good to see your posting. I was thinking about you and wondering how you were doing. I too I have to shake my head on the long wait for the doctors appointment.

Although I've only been lurking, I too was wondering where you've been. Know that you've got friends in this world caring and praying and wondering about you! Hang in there!

Ah good - you are back. I was getting concerned.

Ah not good that you are having such problems, especially getting in to see the neurologist.

I have nothing to offer but a careful hug and compassion.

Lots of shaking heads, including mine. Are you on a cancellation notice in case an appointment comes available from someone cancelling their appointment?

Hi Maddy, so glad you checked in. One thing popped into my mind, any connection with increasing the Benedryl and more daytime sleeping? I know that for Mike,even small doses gave him daytime hangovers. Just a thought?

Just an FYI... I make appointments with my sleep specialist at least two months in advance. I feel I need to CMA and be my own advocate.

i was hoping you'd post under the new name happy-a-lot but we're glad to here from ya anyways

Must be ESP. I almost posted yesterday asking if anyone had heard from you. Of course, we always hope that no news is good news. *sigh* Sure as the devil am sorry to hear that there's not much change. *sigh* I agree w/DoriC that the Benadryl may well be the culprit in your need for the long naps. It seemed to work well for me at first and then I encountered more and longer daytime hangovers. It took about a week off it before they passed completely.

Benadryl only makes me sleepy for a bout a week, then it wears off. However I don't sleep well when I take it, I keep waking up.

Maddie, I'm so glad to see you checking in.

Hope your regular neurologist can speed things up for you to get in with the other neurologist. The delays have to be so frustrating for you.

There must be a forum ESP type of thing, since I too was thinking about you, Madalot.
I hope your regulat nerologist will make things easier for you.
Keep us posted.

You all are very kind.

As far as the appointment with the sleep neurologist, we are in the "review of records" phase to determine IF he thinks it would be beneficial to see me. So I am NOT on any cancellation list or anything like that because to the best of my knowledge, he hasn't made a decision whether he is even going to see me.

My regular neurologist's office told me they wanted to refer me to him on June 23. Here we are early September -- typical.

The pain issue is troublesome. I've been told that pain is NOT supposed to be a significant problem with muscular dystrophies. Figures.

Benedryl -- I HATE taking it, but it WAS helping me sleep through the pressure increases. I am waking up again, but don't bother looking at the vent to see the pressure increases because I can feel them. I wake up, feel the higher pressure, curse a bit, struggle to turn over and go back to sleep. I don't know if the benedryl is affecting the daytime sleepiness. I have been tired during the day for a LONG time, but sleeping for HOURS is new.

I'd like to say that the daytime sleeping is paying back a sleep debt. If my cognitive function and memory are any indication, I'd be inclined to say it's NOT because I'm finally getting decent sleep, but that my sleep is being so badly disrupted that I'm exhausted. My family is reminding me of things I've said that I swear I can't remember saying. I used to be an avid reader before my eye muscles got so bad, but decided to start a book a couple weeks ago. I have ALWAYS been one of those that can put a book down and not read it for weeks at a time, pick it back up and remember what it was about and continue reading. I put the new book down for ONE week and picked it back up, totally lost and confused about what it was about.

Anyway -- I'm doing what I have been doing and waiting to find someone that believes something isn't right and wants to really look and help me figure it out. When I hear from the sleep neurologist, I'll post either way.

As with others, I'm glad to hear from you and sad that the news is not yet good news.

Madalot wrote: As far as the appointment with the sleep neurologist, we are in the "review of records" phase to determine IF he thinks it would be beneficial to see me. So I am NOT on any cancellation list or anything like that because to the best of my knowledge, he hasn't made a decision whether he is even going to see me.

My regular neurologist's office told me they wanted to refer me to him on June 23. Here we are early September -- typical.

And how long has the sleep neurologist had your records to review? If I were you, I'd let the regular neurologist know that you are still waiting for the sleep neurologist to review your records and that it has been two and a half months and one major snafu later. Maybe the regular neurologist can say something to shake the sleep neurologist into looking at your records. Or call the sleep neurologist's office yourself and remind them (maybe once or twice a week) that they have your records and that you need a "yes/no" decision about whether the sleep neurologist is willing to take you on as a new patient.

The pain issue is troublesome. I've been told that pain is NOT supposed to be a significant problem with muscular dystrophies. Figures.

You have reported the pain to the regular neurologist, haven't you? Other than saying "pain is NOT supposed to be a significant problem with muscular dystrophies", what else did the regular neurologist have to say about the pain? Any advice on what pain killers might be ok to take and how frequently you can take them?

Anyway -- I'm doing what I have been doing and waiting to find someone that believes something isn't right and wants to really look and help me figure it out. When I hear from the sleep neurologist, I'll post either way.

This waiting and waiting and waiting has to be exhausting all by itself. Your frustration caused by not being able to find a doctor who is willing to dig into your problems (and records) and use a thinking cap to come up with some new ideas is understandable. I wish I had some advice in how to find the kind of doctor who will listen to you and listen closely to what you say and do some serious thinking and problem solving re your situation.

Hang in there, maddie---both for yourself and your family. And us.