Just Started Mestinon, Concerned

[kclynn]

My son just started Mestinon. He took it last night and this morning. He was feeling quite good and spent today with friends, homework and video games. Nothing too stenuous. This is all really good.

On the drive home he asked if his aunt had sent his birthday (meant Christmas) present and I said no. A minute later he asked if his aunt had sent his birthday (same error, meant Christmas) present. I said no. A couple minutes later I told him to bring in the grocery bag with Ramon Noodle soup. He said could I make him some right away and I said yes, then he turned and shut the door leaving the bag. I said, hey you forgot the bag of Ramon Noodles and he said, oh, then as he was picking it up said, can you make me some right away? I said yes, did you know you just asked me that? he said No! but his friend had commented that he was repeating himself a lot today?

It was strange and both times he asked the question the second time exactly like he asked it the first time. Should I be concerned? Is this the Mestinon or more of the same brain fog (which he has had pretty bad)? Mestinon doesn't list this as a main side effect but maybe it is but not too common?

I really hope this works out because he seems to be having a great day and I just hope he isn't going to crash too badly.

[hilbiligrl]

This probably won't help, but what you describe is exactly how i am on some days. It's so bad, it gets scary. But it seems to come and go.... several days in a row im am like how you describe, then a few days i kinda get a break, and then it comes again and so on and so forth, over and over. But i repeat questions, actions, etc to the point that it kinda either aggravates the hubby or he gets tickled with it or sometimes is as concerned as you are.... but im thinking he is starting to understand i simply can't help it. I hate it, i really do. This brain fog has been one of my symptoms for about a year and half now, in addition to lots more symptoms.

Im not on any meds right now, im awaiting vanderbilt and a new rare case doc to start me up on some type of regimen. I've read so many posts about mestinon and i want it to be the first thing i try, because my worse symptom of this disease is the incapacitating exhaustion 24/7. I am curious about the replies on this post, so as to know what to expect on side effects. I seem to be infamous to have all the rare side effects of almost everything i take.

I hope it's just the pots and not the med, especially if the med is working. Let's hope he pulls out of it quick. I couldn't imagine either of my children having what I have, I don't think I could handle it, so i admire your strength as a mom with a child with this.

many blessings

hilbiligrl

[kclynn]

Thanks for the reply. Yes, I should say he has had a terrible time with brain fog the last couple of months. He hasn't been in school and only does a fraction of the required work so he is so far behind. Anyway, I do suspect that it is probably not the medicine and I don't even know if the medicine is responsible for his good day. He is often like a rubberband and will swing really far one way having more energy and elevated mood than usual then swing the other way and get weak and sometimes unusually agitated and short tempered (all the while saying I don't know why I am acting like this!)

[Sarah4444]

I also definitely have auditory processing issues with POTS, as well as trouble remembering what I have said out loud and what I have just thought. I also forget things a lot and it's different from day to day. I'm not taking Mestinon and it's just the "brain fog", but I have no idea whether the med could make this worse. Sorry that you and your son have to go through this.

[sue1234]

I would think if this just popped up today and is out of character for his "norm", then it is probably medicine related. Definitely something to talk to the doctor about via a phone call.

[hilbiligrl]

Oh my, you describe me perfectly. Yesterday I was feeling so well, i was thinking about the possibility of work and had an optimistic outlook.... then today, i wake up to feeling like a rotten corpse and in a very aggitated state and yes, i too say, i have no idea why! I bounce all over the place with symptoms, severity and functionability. Its enough to make the mentally strongest person in the world go a little nuts. I can't plan anything and i never have any idea as to how i will be from one hour to the next. It *****.

In high school i would miss 45 days or more a year.... id get so behind but somehow would make it up everytime. But i was always sick with migraines and exhausted, but at the same time drove myself to make straight As... if i made below a B, i would totally lose it. I wish I would have taken it easy in high school and chilled out and had a little fun. But oh well.

I hope the mestinon works well for him! It seems to work for alot of people on here, and for that, it's the first drug im gonna ask to try and hope like crazy it can break through the devastating exhaustion and weakness.

yes, the brain fog is horrible. Im kinda getting use to it, but at the same time, during peak episodes like your son's today, it just drives me nuts and i am just hopeless. I hear that teenagers have the chance of growing out of this... its seems i grew into it... lol. But i hope that your son grows out of this!!!

hilbiligrl