UPDATE - Appt with Sleep Neuro

msradar65 wrote:Keep plugging along..and we we all have your back here!

You all are very sweet to keep putting up with me and my array of problems. All I can say is.....

Thank You.

Doesn't seem like enough, but it's all I've got.

And cute kitty pictures as my avatar.

...
You all are very sweet to keep putting up with me and my array of problems. All I can say is.....

Thank You.

Doesn't seem like enough, but it's all I've got.

And cute kitty pictures as my avatar.

[/quote]

And we love you and your cute kitty avatars! I know I've been MIA a lot lately, but when I do come here, you are the first (and sometimes only) one that I look for. I'm sorry things are going so bad for you. I wish there were more I can do or say, "but it's all I've got."

And a hug for you!
(I was going to copy and AMEN jnk's post, but I see you already responded to that...I was too slow!)

Madalot wrote:

msradar65 wrote:Keep plugging along..and we we all have your back here!

You all are very sweet to keep putting up with me and my array of problems. All I can say is.....

Thank You.

Doesn't seem like enough, but it's all I've got.

And cute kitty pictures as my avatar.

We could come there and beat up that ill manner nurse for you?

msradar65 wrote:We could come there and beat up that ill manner nurse for you?

LOL -- It's hard for me to understand how people in general can be this way. I told her what my name is and what to call me (Kathy) but she insisted on calling me "Miss Katrina." I gave up correcting her after the 4th time.

I know that it IS the nature of the beast these days (doctors are so busy and have to rely on nurses and other medical team members), but I have a very hard time accepting, from the nurse, that the doctor said just to try to the other drug, after everything I had been through. They seemed dismissive or not believing it was as bad as it was. I wanted/needed an acknowledgement and something from the doctor saying that IF we decided to try the other medication, we would be very careful in the dosing and that they would be available to me if there were problems. I got none of that -- just a "you can try it if you want." What I WANT is to not be so tired all the time, but I also WANT not to feel like I did last weekend.

Madalot wrote: What I WANT is to not be so tired all the time, but I also WANT not to feel like I did last weekend.

And that does NOT seem like an unreasonable desire on your part! I understand it is very complex, but you are still a human being, and deserve to be treated as such! I think there are many of us here who would love to come and be your health care advocate. At least know that we ARE beside you, supporting you, and that we CARE, even when the doctors/nurses seem to not care.

Madalot wrote:I wanted/needed an acknowledgement and something from the doctor saying that IF we decided to try the other medication, we would be very careful in the dosing and that they would be available to me if there were problems. I got none of that -- just a "you can try it if you want."

Your desires and needs are completely in line with reality and are reasonable. The very serious nature of the side effects --- BREATHING --- should not be dismissed, by any doctor or nurse or whoever. Your concerns about dosing are very pertinent, seeing as they just threw you on it at a pretty high dose and then had this awful reaction. It also seems to me that a detailed explanation of the difference between the two drugs is in order, for you to be able to make an informed decision. Or, really, any explanation at all.

I am glad you are recovering from the side effects.

((( hugs )))

Well said, snug!

jbn3boys wrote:

Madalot wrote: What I WANT is to not be so tired all the time, but I also WANT not to feel like I did last weekend.

And that does NOT seem like an unreasonable desire on your part! I understand it is very complex, but you are still a human being, and deserve to be treated as such! I think there are many of us here who would love to come and be your health care advocate. At least know that we ARE beside you, supporting you, and that we CARE, even when the doctors/nurses seem to not care.

I had a conversation with my husband about this, saying that I am getting to the point that I am so frustrated and fatigued that I don't feel I am capable of fighting for myself. Unfortunately, he can't really fight for me as he does NOT have the right personality or temperament (plus he is just too busy). And if he can't do it (and trust me, he can't), I don't have anyone else.

So, I am back to where I was, fighting for myself, even though at any given time, I am physically and emotionally unable to do it.

Right now -- my regular neurologist regarding the mestinon (keep taking it at current dose, increase the dose or stop the med completely) -- Fellow was irritated with me and said he would have MY doctor (Attending) call me to discuss it and make the decision. That was yesterday morning. At what point do I decide that he either was NOT told or got too busy and forgot? And when I decide that I am NOT getting a return call, what do I do? Call and try to explain what happened (Fellow decided I need to speak to Attending) and then I wait (again) for someone to call me back? And IF someone does call me back, will it be the Fellow or the Attending?

And I have no fricking clue what to do about the sleep neuro. According to his nurse, either let them prescribe Provigil and try that (without any guarantees or promises about them being available for problems) and if I decline that, he has no other ideas about what is making me sleep so much during the day or how to fix it.

I'm supposed to see my pulmo next week and I guess I can try to dump it back on her, but I don't have a lot of hope that will get me anywhere.

Oh well...it's getting to be nap time...might as well give in to it.

I just had to add this, because I run into it EVERY time I have an appointment, even with specialists who should understand better...

I tell them I am using a ventilator and they say "You mean, cpap, right?" and I say "No, I mean a ventilator. I failed on both cpap AND bipap and am using a Trilogy Ventilator with AVAPS" and they still insist that I don't know what I'm talking about and am using a cpap or bipap. Now, I DO get that a lot of people do not understand what a cpap really is and call it a ventilator, thus why I have to waste so much time explaining that I really am using a ventilator.

At my appointment with the sleep neurologist, the Resident did the same thing to me (ugh) and it wasn't until I pulled out the manual on the Trilogy that he finally believed me that I wasn't using a cpap or bipap.

Or like the woman in the sleep neurologist's office who said that if I had sleep apnea (which I may or may not have, but pulmo believes is likely) that I need to be on a cpap, this AFTER I took great time and effort to explain my situation to her.

And we wonder why I'm so fricking tired.

As to the excessive daytime sleepiness, some of us never get over it- it's called hypersomnia (different from Narcolepsy). You just sleep too much.
If you try the Provigil I would start at a 50 mg dose. If you have side effects you don't need medical support to tell you to stop the med.
Can you just take a vacation from the physicians or a week or two and rest up until you feel more like dealing with the situation?
I understand you're seeing different doctors all the time. Communication is bound to be poor and each new doc has to start from scratch. This doesn't sound like a good situation. You need more stability and with your complicated medical history one person to follow you for the OSA problem.

What is your single biggest problem right now?

I am a long term Provigal user (6 years). Let me share some of my findings.

Your body needs to adjust to Provigal, that will take some time before you overcome some feelings of anxiety, nervousness, nausea (those are I side effects I experienced). I would recommend you start with a low dose (get a pill cutter) 50mg. After a week increase another 50mg until you reach the Doctors recommended level. Use it daily, first thing in the morning. Do not skip a day. It is non habit forming, and side effects are mild. Do not use it after lunch time as it may impact your sleep. The low initial doses will also help avoid interference with sleep.

Avoid Nuvigal. It is a longer acting, slow release version. Even after years on Provigal,converting to Nuvigal (even giving my body time to adjust) I had found my sleep was disrupted.

Do not be afraid to work with your Doctor on higher doses, if the results do not show. I have been at 300mg per day now for 4 years. It is non habit forming, has relative few side effects which go away over time. It is also far better for you with less side effects than other options such as Caffeine, Adderall and Ritalin. We have also found effective for me to stagger my doses with 200mg first thing followed with 100mg just before lunch.

Good Luck.

Bear, I know everyone is different but since you have experience with this drug, when you say "some time to adjust", are you talking days, weeks? Also, if after a few days Maddy has side effects she can't tolerate, is it OK for her to just stop the med cold turkey and talk to her Dr later or is this something that has to be weaned? Maddy, hope you won't mind my asking questions for you!

Long story. It took me 6 months to figure out how to deal with Provigal, and since I was first in my Doctors office they were not of much help.

Start with low dose 50mg (although I was prescribed for 200mg), this will greatly weaken side effects. The side effects go away after using consistently (and I do mean every day) after about a week - for me at least. Both of these were required for me not to give up on Provigal, the side effects at 200mg were just too bad. I also though I could skip a day when I felt okay - like drinking fewer cups of coffee if you are not sleepy. Only by combining low dose and consistent use could I get my body used to the side effects and tolerate Provigal. Then I increased the dose in 50mg weekly increments to get to my prescription.

My Doctor now uses this protocol for all his new patients. We also experimented together with higher doses in small increments again. And in taking it during different times of the day. Beyond 300mg there were zero benefits. Taking 300mg at one time was too much. Taking it past noon was bad for sleep. Thus we ended up at 200mg first thing, and 100mg before lunch. I kept daily logs of everything, sleep time, medications, caffinne, exercise, stress, side effects. This has helped me and the Doctor to systematically figure stuff out.

My Doctor was really pressed hard by the Nuvigal rep to try Nuvigal. I was one of his first. We tried a bunch of different doses and times. The problem was that Nuvigal would stay in my system too long and reduce quality of sleep. Might work for others, not me.

All of this my experience, as they say your mileage may vary.

Bear 100

Mary Z wrote:As to the excessive daytime sleepiness, some of us never get over it- it's called hypersomnia (different from Narcolepsy). You just sleep too much.

The excessive daytime sleepiness was NOT a problem until a few months ago, or least NOT to this degree. It started out as just a bit of sleepiness, where I could catch a fast nap that lasted 10-20 minutes. They gradually got longer and longer and now they are sleep fests lasting from 3-5 hours most afternoons.

Even though they cannot find it, I still contend that something is disrupting my nighttime sleep (I know it is because I wake up a lot) and if we could fix THAT, the daytime problem would improve. The problem is that nobody seems to be able to find (or believe) that anything is wrong at night.

Mary Z wrote:What is your single biggest problem right now?

Biggest problem now is the excessive daytime fatigue, which is probably because of a nighttime issue. The daytime fatigue is also causing increased weakness, which naturally makes it harder to do much of anything during the day.

DoriC wrote:Bear, I know everyone is different but since you have experience with this drug, when you say "some time to adjust", are you talking days, weeks? Also, if after a few days Maddy has side effects she can't tolerate, is it OK for her to just stop the med cold turkey and talk to her Dr later or is this something that has to be weaned? Maddy, hope you won't mind my asking questions for you!

No problem, Dori. Always appreciate the help.

Nuvigil is NOT for me, that's for sure. If my doctor was more "hands on" about all of this, I might be more inclined to give Provigil a chance, but with very, very careful control and guidelines. I'm not "feeling it" right now with the casual, blase "you can try Provigil if you want" attitude I'm getting, after suffering such horrible problems last weekend.

I'm not really that onboard with waking agents to begin with. I resisted when it was first mentioned a while back because I take enough medications and still believe that if they would take more time to investigate what the heck is happening at night and fix it, the daytime problems would go away, thus alleviating the need for any waking agents.

And as if I don't have enough problems/things to worry about....

I just received a notice in the mail that the company I purchase my Medicare Advantage Plan through (and have been since 2007, the one that pays for all of this) is no longer offering my plan (or any other I can get) in 2012.

I need to start all over again and figure out what plan will cover all this (and my vast number of doctors) with the least amount of out of pocket expenses....

What fun!