Madalot is Around...

I'm still here, reading a lot, just not posting very much.

My personal situation hasn't changed and I've stopped trying to figure out how to improve it. I use the ventilator (AVAPS, with IPAP allowed up to 23) every night with 2L oxygen. I still wake up a lot, usually feeling the high pressure in the mask. I don't bother checking the ventilator, and just lay there until the pressure drops back down enough that I can go back to sleep. The daytime fatigue has not improved either. I try to find ways to occupy myself during the day so I don't sleep, but if nothing works, I sleep in my 3-position recliner or on the couch with the ventilator and oxygen. It is what it is.

I've stopped the mestinon for a second time, trying to determine if the increased weakness I'm experiencing is from that. I still am not certain as even off the medication, muscles in my arms, legs and back are giving me more trouble, resulting in basic things like showering and dressing to be real challenges. Trying to get my own lunch would be comical if it weren't so frightening and frustrating for me. Weekends are better with family around to get it for me.

The mestinon WAS making it possible for me to read. I finally broke down and purchased a Kindle (Fire actually so I would have internet access) and the flexibility to change the print size and spacing DOES help. I still do better with reading on the mestinon and have not decided whether to resume taking it. The reading seems to be the biggest benefit I get from it, which is worth something to me. But if the mestinon is causing this other weakness...I wish I could tell for certain.

On a brighter note, my husband has been using the S9 (loaned to me) and took to it faster than anyone I have ever heard of! From night one, he has used it all night, every night. The on-screen data indicates fantastic numbers, with an AHI usually around 1 or 1.5. He says he feels he is sleeping better, not waking up as much (and NO SNORING) and says he feels like he's not as sleepy during the day.

So, with the help of more forum members, a Craigslist search resulted in a new PR System One Bipap Auto at a fabulous price -- it should arrive next week. I will switch him to it as soon as we get it, hoping he does as well on it as he has on the S9. Keep your fingers crossed.

The sale also included numerous masks which we will try, but any we don't like we will up for grabs here. I will post the specifics once I get them and know which ones we won't use.

So...that's it from the world of the "enigma" --

Maddie, I'm sorry that your problems have not eased up, but you have done a wonderful thing for your husband. Gotta keep him healthy to help you! And for his own sake, of course.

Something that shines through in this, your most recent post, is your good attitude about facing what you must deal with each day. Trying to make it better, but if that can't happen, then working with what you've got -- to get as much enjoyment in life (like the reading you love to do) as possible.

Maddie,
Mestinon is a cholinesterase inhibitor which translates to increased acetylcholine (neuro tranmitter) at the neuromuscular junction. Increasing muscle innervation. There is no way that Mestinon could cause muscle weakness.

Removing it from your drug regimen could cause increased weakness. Do you do this a lot? Mess with your drug therapy like that?
Jamis

Maddie, though I sure wish you were able to find some solutions, acceptance of your current situation can be a relief in itself. Though you continue to do what you can to improve your situation, you should not feel as if you have "failed". You have not. You are making the most of your situation.

Though I do not face anywhere near your situation, I know what it is like to feel as if your life is being ripped out of your grasp. I no longer work. I had to go on disability. And it was not my desire. I find I can no longer handle the strain of dealing with people. I often only go out of our home once a week or so. Even going out to eat will leave me with badly slurred speech, problems walking and even seeing. Like you, I do know the frustration of fighting with your body to maintain your current state. I would not wish it on my enemies.

But know - beyond a shadow of a doubt - you have not "failed". Even in your current state of acceptance, you attempt to make life more bearable for you and others. You try an eReader to improve your situation. And you help your husband. Good for you for both counts.

Like you, I picked up a Kindle to help with reading. Recently, due to continued problems with my eye muscle coordination, I had to adjust the font size to the third from last (largest) setting. Not the last or largest font size. Not the next one. But the third. And sadly, I sometimes have to adjust it to the next from last. My vision is getting a LOT worse. Not the eyes. They remain healthy. However, my due to muscle coordination problems, my eyes shake about in my head (nystagmus). And continues to worsen.

As a note, audio books becomes another option to help if your find it to hard to read. I have built up a large collection of audio books over the years. It helps.

Know that you remain in our prayers. Thank you for the update. And as always, if there is anything we can do to help, just shout.

jamiswolf wrote:Maddie,
Mestinon is a cholinesterase inhibitor which translates to increased acetylcholine (neuro tranmitter) at the neuromuscular junction. Increasing muscle innervation. There is no way that Mestinon could cause muscle weakness.

Removing it from your drug regimen could cause increased weakness. Do you do this a lot? Mess with your drug therapy like that?
Jamis

Why don't you go and read several years of posts by Madalot before making judgemental comments like that. There is a search function at the top of the page. Just get a nice glass of wine and a lot to eat and start reading. All of it. It should only take you a few days. Then sit down and think over what you want to say very very carefully.

Blackspinner wrote: Why don't you go and read several years of posts by Madalot before making judgemental comments like that. There is a search function at the top of the page. Just get a nice glass of wine and a lot to eat and start reading. All of it. It should only take you a few days. Then sit down and think over what you want to say very very carefully.

I have read many of Maddie's back posts and have been fairly active in at least one recent thread. Perhaps it sounded judgmental but I was actually asking a question of some significance.
Jamis

My thanks for the words of support and encouragement.

Jamis, increased muscle weakness IS possible side effect of mestinon. It seems a bit weird to me, but trust me - it's a listed side effect.

I do NOT make a habit of changing my meds or dosages on my own. I am very much against that type of thing, always erring on the side of caution and checking with my medical professionals before I make any changes. I have spoken with my neurologist several times about the mestinon and he has said that I can take it if it's helping and not take it if it's not.

The last time I talked to him, he and I agreed that the only significant benefit I get with it IS the effect it has on my eyes, thus my being able to read books again. He said that what I *could* do if I wanted was only take a dose when I planned on reading and skipping other doses that wouldn't be giving me any benefit.

I have NOT spoken to him as of yet about the increased weakness, but since he was pretty specific about what I could do (or not do) with the mestinon, it seems reasonable to stop it and see if the weakness improves.

Madalot wrote: Jamis, increased muscle weakness IS possible side effect of mestinon. It seems a bit weird to me, but trust me - it's a listed side effect.

Maddie,
I wasn't aware of that paradoxical effect of the drug. I had to research it and discovered it's related to dosage ranges that are too high causing an overload of the acetylcholine receptors causing malfunction...hence weakness. It is a dose related side-effect though, so if you're on a low dose, it seems unlikely. I didn't mean to be confrontive, but it worried me that you eliminated the one medication that can increase your muscle strength.
Jamis

PS The irony only occurred to me later...that I was being accused of being judgmental by BlackSpinner, the Queen of Judgment.

Ño problem, J. I have a hard time thinking mestinon is responsible but need to be sure anyway.

The LAST thing I want is a spitting match start over or because of me or my thread.

Madalot wrote: The LAST thing I want is a spitting match start over or because of me or my thread.

No more sniping at Spinner...promise.

Maddie,
One more issue on the Mestinon, and this is more related to people with a clearly defined Myesthenia. Abrupt cessation of the drug can trigger a Myesthenic crisis (severe weakness) so taper off next time you feel the urge to quit Mestinon.
Jamis

In my situation, NOTHING is certain or defined. A myasthenic syndrome is a theory, like everything else. I appreciate the warning and will keep it in mind.

Hi Maddie! Glad to see you posting. Sure wish things were going better for you but as usual it sounds like you're handling your situation as well as possible. I don't know if this might help but it might: in reading Bravermans' book The Edge, he has some suggestions for increasing levels of acetylcholine that might be helpful in addition to all the other things your doc is trying...worth investigating and discussing with your doc.

Hey Maddie,

Good to see you posting! I was wondering how you were doing. I know its tough. Fix one thing and break 2 others! I admire your spirit.

JohnBFisher wrote:Like you, I picked up a Kindle to help with reading. Recently, due to continued problems with my eye muscle coordination, I had to adjust the font size to the third from last (largest) setting. Not the last or largest font size. Not the next one. But the third. And sadly, I sometimes have to adjust it to the next from last. My vision is getting a LOT worse. Not the eyes. They remain healthy. However, my due to muscle coordination problems, my eyes shake about in my head (nystagmus). And continues to worsen.

I'm sorry you're having trouble with this issue as well John. My vision problems vary so I change the font size as necessary. For me, I use the highest spacing between lines - it helps me a lot.

JohnBFisher wrote:As a note, audio books becomes another option to help if your find it to hard to read. I have built up a large collection of audio books over the years. It helps.

I used to listen to audio books when I drove 45 minutes to work. Loved it. But I find that my mind is too easily distracted to listen to books on a regular basis. I find myself NOT listening, thinking about something else, and then realizing I've missed a ton and have to go back. Actually reading with my eyes is much more enjoyable for me.

The Kindle has been a good thing, but as with many things I do to improve my situation, another "problem" frequently arises. Holding books/Kindle has caused extreme muscle fatigue in my arms & shoulders. I have ordered a Kindle case that has a stand, but it hasn't arrived yet. I'm hoping that will help.

Maddie,

I am so sorry to hear that things continue to be rough on you. You do have a fantastic attitude towards everything. And you're lucky to have your husband there. But still, it's tough on you. Sending lots of warm hugs and a virtual baked goody of your choice .....