UPDATE - Appt with Sleep Neuro

If I had recently started a drug that had documented side effects such as "alterations in mood, perception, thinking and feelings" and that could potentially effect my daytime breathing, I would be monitoring my mood and my breathing very carefully and keeping my doc tightly in the loop in my decisions about whether the drug was for me, given my other conditions, and if so, at what dosage, especially if I were dealing with muscle weakness that was already affecting my daytime breathing.

I am not trying to be an alarmist, but if I had any indication things changed negatively at all with the start of a drug, I would be trying very hard to differentiate normal anxiety and depression (if you will) given my situation, from the kind that can be triggered by a drug that was new to me.

This is only a heads up, not a conclusion, or medical advice of any kind.

jnk wrote:If I had recently started a drug that had documented side effects such as "alterations in mood, perception, thinking and feelings" and that could potentially effect my daytime breathing, I would be monitoring my mood and my breathing very carefully and keeping my doc tightly in the loop in my decisions about whether the drug was for me, given my other conditions, and if so, at what dosage, especially if I were dealing with muscle weakness that was already affecting my daytime breathing.

I am not trying to be an alarmist, but if I had any indication things changed negatively at all with the start of a drug, I would be trying very hard to differentiate normal anxiety and depression (if you will) given my situation, from the kind that can be triggered by a drug that was new to me.

This is only a heads up, not a conclusion, or medical advice of any kind.

Wise Words, my friend - wise words. By lunch time on Friday, I was feeling really, really badly and called my doctor's office again, expressing that I really NEEDED to be called before the end of the day. I told the woman that I was really not feeling well and was pretty sure it was the Nuvigil.

I got NO CALL and had to decide how to go about making it through the weekend. Yes, I could have called the after-hours emergency number, but you know? There is SO much going on with me that even those that work with me get confused -- trying to explain this to the on call doctor? We decided to go it on our own - right or wrong.

Being afraid to stop the medication cold, I took a half dose on Saturday and spent the entire day confused, upset, sick as a dog physically - my appetite shut down Thursday and I was barely eating, and anything I did eat caused stomach pain and nausea, having trouble breathing (thank goodness for the ventilator and believe me, I used it pretty much full time) -- and just trying to make it. Somebody was with me full time.

I slept (on and off, never full time) for 13 hours Saturday night, was up for 2 hours, then slept another 5-6 hours (on and off) Sunday afternoon. I did NOT take any Nuvigil on Sunday.

This is Tuesday afternoon, and I am very slowly returning to how I was before starting Nuvigil (obviously not a drug my body cares for). I am still NOT feeling well, but better than I was. I was actually able to do a load of laundry (myself) today. I slept for over 3 hours afterwards, but hey --

I HAVE been talking to the nurse in the sleep neuro's office this afternoon, finally. She claimed that my messages on Friday were never given to them so they didn't know I was having problems.

The sleep doctor has asked if I would be willing to try Provigil instead, which frankly scares the crap out of me. Seriously. As bad as things are on a regular basis, things on Nuvigil were a thousand times worse. I told her I need to think long and hard about this one.

If I refuse (which they understand if I did) my only option is to be evaluated more thoroughly by my regular neurologist.

Here I am again, with no really good options for solving this so I can feel a bit better. Rock and a hard place again -- my home away from home.

I'm just glad you're OK.

Sorry you had to go through that.

It may have just been a dosage thing, and a gradual ramp up into the other drug may still be worth a shot, if your docs think so, and if you are careful about it. Your choice, of course. Always.

Thank you for posting!

Sorry things went so badly for you. If you do decide to try another drug I would definitely ask them for a number that DOES get through to them in the event of an emergency. I'd probably also want to hear his reasoning on why you might expect to react differently to provigil (just to make sure he had some).

Edit: And guidelines for how to discontinue any drug you try in advance. You shouldn't have to guess about that.

Madalot wrote:The sleep doctor has asked if I would be willing to try Provigil instead, which frankly scares the crap out of me. Seriously. As bad as things are on a regular basis, things on Nuvigil were a thousand times worse. I told her I need to think long and hard about this one.

Yes, definitely worth a good long think! They are chemically similar enough that there could be cross over problems, but also different enough that you may not have the same problems with the Provigil. I have found that sometimes medications have worked fine for me, even though everyone was predicting otherwise, based on my reactions to similar medications. But sometimes, the reactions to similar medications were so bad that I wasn't willing to get near anything even remotely similar.

I have been on various combinations of stimulant medications for the past ten years and I have learned (usually the hard way) that my body needs lots of time to adjust to new drugs or to different doses of the same drug. I do long tapers on most new medications, but especially so with the stimulants. And when going off drugs, especially stimulants, it takes my body a good long time to regain some sense of equilibrium, even after I have been off the drug for awhile.

Madalot wrote:Here I am again, with no really good options for solving this so I can feel a bit better.

Are there other stimulant medications that might do a better job for you than the Nuvigil did?

Deborah

Mad, I am so sorry things got so terribly bad. It sounds like hell.

Once again, others have expressed my ideas and feelings better than I could on my own. From my own experience, I once started a new medication on a Thursday, with my doctor out of the office on Friday. From then on, I decided to only start new medications on a Monday.

((( hugs )))

As far as agreeing to try Provigil - I don't know. Right now, my husband and kids are too busy to even risk it. My husband has so much going on that I can't get time to discuss any of this with him. Things will calm down next week (hopefully) so we've decided NOT to decide anything until we can do it calmly and not at Midnight. But I am so hestitant to try Provigil after that nightmare last weekend.

I received about four calls from "Neurology" yesterday, none of the people calling would identify whether they were with the sleep neurologist or the neuromuscular neurologist and seemed irritated that I was demanding to know which office they were calling from so I could know which gear to get in for the discussion. The nurse from the sleep neuros office kept saying "your doctor" instead of using his name so I could keep straight who she was referring to. At 5:05, I got yet another call from a doctor in neurology and had to wait until he said something more to figure out what he was calling about. He was calling to follow up on the Mestinon. I tried to explain what I felt the result was (minimal) and he basically interrupted me and said "we're more wondering how it affected your eyes" and when I had trouble giving him a good answer (in part because of the issues with Nuvigil and tried to reiterate how I felt it went from an overall energy/strength point of view), he asked me "Do you have weakness elsewhere?" This was my neuromuscular doctor's fellow and while I understand that working with a teaching hospital is going to be like this, that is the most stupid question to be asking me -- do I have weakness elsewhere? Are you kidding me?

Because he called me at 5:00, which for me, was just after a 4-hour nap and I was standing at the stove, trying desperately to prepare a meal for my family, and I forgot to mention something important to him about the medication (worsened double vision). I called him this morning and actually got him on the phone, but it is SO hard to talk with these doctors because they don't know me, have never seen me and are trying to treat me based on what they are reading in the file. And I politely (I swear I was polite) said that to him. This new guy (they change fellows every 2 months) didn't care for that and said he would just have my doctor call me, which is actually good, but may anger/upset my doctor because he is just so busy.

Anyway -- I am back to where I started at this point. Sleeping 6-8 hours a night (interrupted), sometimes getting a couple hours of useful time in the mornings (but my muscle weakness makes doing much of anything difficult), but crashing hard by lunch and needing to sleep 3-5 hours in the afternoons. I get up, worry about dinner for the family, eat, get my robe on and am settled in my chair by 6-7pm to watch TV until 9 or 10 when I get into bed, watch more TV, then fall asleep by 11:00 or 12, up by 6:45 and start the cycle over again.

I use those few precious hours in the morning to be online (here) or watch TV (and every other day try to do 1 load of laundry).

That is my life.

((( mad )))

Nuvigil (you probably know this) is just a shorter acting version of Nuvigil. Nuvugil comes in 150 and 250 mg doses, Provigil in 100 and 200 mg, any of which can be halved with a pill cutter.
These are just two of the drugs used for daytime sleepiness. The others are mainly for ADD and are CNS stimulants. (Personal research only.)

If you had a bad reaction to Nuvigil I would hesitate before trying Provigil except perhaps at a very low dose. The advantage to Provigil is that you should be able to take it a little later in the day and still avoid insomnia.

Sorry you are having such a bad time. Thanks for keeping us posted.

By the way, I have taken Provigil and Nuvigil at high doses with no side effects, but have heard anecdotal reports from other people who do not tolerate them.

Maddie,

I am so sorry that things continue to be so rough for you. And "rough" is not the right word to really describe what you're going through.

It's a shame that the Nuvigil created such severe side effects in such a short time. I can certainly understand reluctance to try Provigil at this point. And in my humble opinion a very reasonable and defensible answer to the question, "Would you like try Provigil?" is "Not at this time."

As for the situation you describe with the calls from "Neurology" and the unwillingness of the people on the other end to tell you exactly who they're calling for: That was simply out and out right WRONG of those people. I mean really, it's not like the doc's name is a secret and they're not invading the doc's privacy by saying, "I'm calling from Dr. So-and-so's office to speak to you about such-and-such." I mean absolutely every doc's office that calls our house about anything---from routine reminders of routine checkup/followup appointments to calls to let us know lab results are in starts with: "I am calling from Dr. Specific Name's office. May I speak to <Robysue or hubby>?"

I'd complain the next time you see the doc involved if I were you. Politely explain that when his staff does not properly identify themselves and the office that they're calling from, that it makes it very, very difficult for you to give accurate information about the issue they want to discuss with you.

And if such a thing happened again, I'd suggest not being quite so polite: Simply say very directly: I have two different neurologists treating two different issues. Your doctor knows that I also see the other one. Please tell me which neurologist's office you are calling from so that I know what we're talking about.

Maddie,
Ihave to agree with Robysue. That is very rude. I would write both doctors an e-mail or letter and let them know that due to you condition, basic manners is to identify who you are, where you are calling from and for which doctor.

When the nurse calls. I would ask her those questions...if she refuses to answer I would explain to her that I try to take notes on the calls. You understand I see many different doctors and lots of medication. I would like to be able to share that information with my husband when he gets home from work.

I would MAKE them slow down and give you the information that you need. If they don't I would keep interrupting and asking the same questions until you get the correct answer. The other option is to record the call. Let them know since the staff has not been cooperative when they call and you want to share the information that you are recording the call so you can include your husband when he gets in from work.

This is very unprofessional of the nurse. If she said "your doctor" to me...my flippant response would be, I have many which one are you speaking of!!

If that does not work...I would go down the list, is this doctor x, doctor y or doctor z. If she says none of those...I would say when you figure out who's office you are calling from call me back...or have "my doctor" call me directly. Then when you speak with the doctor explain the issue with the nurse.

I know you hate to be ugly..but the squeaky wheels gets the grease!

Having personally had an Anaphylactic shock reaction to a commonly prescribed drug before and having had a friend who nearly died from such a reaction I am in the habit of ALWAYS questioning both the doc that prescribes a new med and also the Pharmacist who fills the script about the known side effects and contraindications of ANY drug I've been prescribed. In particular, get to a good pharmacist and always use the same one -- they can keep track of things involving ALL of the meds you take.
In my friend's case his reaction was to a drug he had taken before -- in this case, however, the reaction was due to a specific drug interaction -- he'd added a different drug into the mix in between the time he was successful in taking the one drug and when he reacted to it.
And always ask -- how to stop taking it and how long for it to completely clear your system (you'd be surprised on how long it is for even ONE dose to clear with some drugs).


Good luck Maddie,

Oh, and I agree with RobySue -- politeness is NOT required -- if they will not identify themselves AND who they represent then they wouldn't be getting any information from me and whoever they worked for would definitely be getting an ear full -- that is inexcusable.

Sometimes as I read experiences of people's interactions with the medical system, I am very disappointed in the system.

But I gotta say for the record that on the other hand, I am very proud of how you have handled things, are handling things, and are thinking about things offered for the future. For whatever those words are worth to you.

We all want to have useful ideas and observations for you. But given what you have had to deal with from medical professionals and in connection with your overall situation, I doubt any of us could be, or would be, handling things any better than you have and are. I hope you "get" that.

Bottom line: The fact that some of us have observations and ideas doesn't detract from how much of an inspiration you continue to be.

The success is just doing the best you can.

And it sounds to me like you are doing very well at it.

robysue wrote:As for the situation you describe with the calls from "Neurology" and the unwillingness of the people on the other end to tell you exactly who they're calling for: That was simply out and out right WRONG of those people. And if such a thing happened again, I'd suggest not being quite so polite: Simply say very directly: I have two different neurologists treating two different issues. Your doctor knows that I also see the other one. Please tell me which neurologist's office you are calling from so that I know what we're talking about.

Tip10 wrote:Oh, and I agree with RobySue -- politeness is NOT required -- if they will not identify themselves AND who they represent then they wouldn't be getting any information from me and whoever they worked for would definitely be getting an ear full -- that is inexcusable.

msradar65 wrote:Ihave to agree with Robysue. That is very rude. I would write both doctors an e-mail or letter and let them know that due to you condition, basic manners is to identify who you are, where you are calling from and for which doctor.

Trying to be fair, once *I* demanded to know which doctor they were calling for, they DID provide the info. But I see one neurologist for my neuromuscular disease and another one for the sleep issues. Saying they are calling from "Neurology" doesn't allow me to get my mind on the right track for which situation they're calling about, something I have trouble doing when I DO know exactly who is calling.

The Fellow was obviously very upset this morning and as of now, I have not heard from my doctor (the Attending). Will I? Hard to say. Messages are frequently "lost" at this facility or relayed, uh, inaccurately. It's a sign of the times I'm afraid.

The problem I have (on this front) is I don't know whether to continue the mestinon at my current dose, INCREASE the dosage (to what?????) and even if I did know, I need a new prescription - or to stop it completely. The Fellow (and his wonderful attitude) made it clear he wanted the attending to call me, but if he never does.....what is a patient to do???

I am NOT in favor of trying Provigil, not after my reaction to Nuvigil. I've put that on the back burner for now and have decided that when possible, just to give in to the desire/need to sleep and not fight it. Me and that ventilator are becoming fast friends I have to say, with me spending upwards of 14-15 hours a day/night on it.

jnk wrote:Sometimes as I read experiences of people's interactions with the medical system, I am very disappointed in the system.

But I gotta say for the record that on the other hand, I am very proud of how you have handled things, are handling things, and are thinking about things offered for the future. For whatever those words are worth to you.

We all want to have useful ideas and observations for you. But given what you have had to deal with from medical professionals and in connection with your overall situation, I doubt any of us could be, or would be, handling things any better than you have and are. I hope you "get" that.

Bottom line: The fact that some of us have observations and ideas doesn't detract from how much of an inspiration you continue to be.

The success is just doing the best you can.

And it sounds to me like you are doing very well at it.

You know something jnk -- I needed this right now. Thank you.

And I thank everyone else that has posted -- please forgive me for not mentioning each one individually.

Maddie,

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