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Old 11-07-2010, 12:40 AM #11
shalynn shalynn is offline
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Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
shalynn shalynn is offline
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Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
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Thanks for your reply. I always screw up the quote thingies, but I'm going to try anyway.

Quote:
Originally Posted by suev View Post
A few things to know about Mestinon...

it effectively lasts about 4 hours - - so if you are taking it twice a day - you are probably 'running on empty' for some hours of the day

it's absolutely best to take it with some food - candy bars don't really qualify, the sugar alone could make anyone anxious

Quote:
Yes, you are right about this. I was out and didn't have anything else with me. I probably should have waited until I got home to take it with something decent. I do think that the reaction was mostly because I hadn't eaten anything in about five hours. I really need to eat more often.

For reasons that I do not know, I was pretty sensitive to Mestinon in the beginning and could 'feel it' kick in...and I was kind of anxious about what I was feeling. After almost 18 months of taking it, I rarely get that feeling anymore even though I now take higher doses

Quote:
I think I can tell when it kicks in too! And, because I've had reactions to meds in the past I think I am extra sensitive to the physical feelings. It's good to know that this could pass in time. If anything, maybe I'll get use to the feeling and it wont scare me so much.


As far as how do you know if it's working? Mostly I know when it isn't - not when it is. If I need more (like when it is getting close to time to take it) - I'm still functioning fine. I'm just exerting more will power to do whatever I'm doing! I could keep going without it - but by the end of the day I would be droopy and tired...and I would be concentrating and using two hands to get the gallon of milk out of fridge - instead of just grabbing the milk!!
Quote:
This makes sense to me. Thanks for your help!
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Old 11-07-2010, 12:53 AM #12
shalynn shalynn is offline
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Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
shalynn shalynn is offline
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Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
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[QUOTE=AnnieB3;713309]

Do your panic attacks have a pattern? Have you spoken to someone about them? If they can get worse at night, it may have been a panic attack. My psychologist explained a very simple thing about panic attacks and the body that may help you. Fear and anger cannot coexist in the body. Fear is what can bring on a panic attack in many people and actually getting angry, among other things, can help you get out of one.

Quote:
I have spoken to someone about them in the past. This is the first panic attack I've had in probably a year. I do think it was brought on by the fear of the medicine. I have had a few severe reactions to other meds in the past. But, I have come far and I am taking quite a few medications now.
A drop in glucose can actually trigger a panic attack! Quit putting off eating!!!

Quote:
You know the weird thing is that ever since I've started the meds I don't feel much like eating. I didn't realize how long it had been since I ate until it hit me. I need to watch this I know.

Do you mind a suggestion on the photos? I have a Masters in design and have taken quite a few photos in my life, including photo shoots. If you can, try to take the photos so that you are looking straight forward. They look a bit like you are looking down. Take the photos in the same exact place with the same exact lighting. If you take the "before" with natural light, then take the "after" with the same lighting. Keep the camera the same distance away from your face. If you can set it on an object that is directly in front of your face and set it for the timing mode, you will get more accurate photos. Due to the lighting, color and angle changes, it's harder to tell if your face is better/worse. It does look like there is a difference. You want to not only capture the eyelids and eyebrows but the entire face. My nose actually droops a significant amount, which is entirely gross.

Quote:
Thanks for the suggestions. The lighting was different. I think I had the camera in nearly the exact location though, I may have been looking slightly down though. I'll try again. I didn't know your nose could droop. I have one side of my face that droops and one eye lid more than the other. But, when I'm really tired both eyelids droop. My eye doc did the test where you look up and my eye lids didn't stay up for long.
What did you have to eat for dinner? Not to be nosy but to see if it's anything that would affect MG.

Quote:
I just had a plain hamburger and nothing else.
How can you tell if Mestinon is working? Well, if you have ptosis on a consistent basis, that's one way. Look at your face before taking it and then one hour after taking it. If you see a difference, it's working. Whether it "works" or not depends upon a lot of factors. If you do a lot during the day, it can be like drinking water and have no obvious effect on MG, even though it probably is. Mestinon is a "helper" drug. If you do too much, your MG will get even worse no matter what. There are people like me who do better on a consistent dosing schedule but others who can take it when they clean or run errands, etc.

Quote:
Thanks for explaining this.
Having someone around when you take it or talking to someone on the phone might help. Anything that reassures you. I'm being serious. Panic attacks are not fun. If you haven't spoken to a professional about how to deal with them, other than taking a drug, you are doing yourself a disservice. There are many coping skills for handling them! And, sometimes, a physical condition (even a drug) like high blood pressure can increase panic attacks. So it's always good to check with your doctor about all of this.

Quote:
In the past, if I would get panicky I would always call a friend. I haven't been in therapy in over a year, but seem to be doing ok. I did lose my best friend suddenly a few weeks ago and that has been incrediabley hard. I made it through the visitation and funeral ok, but I crashed pretty bad afterwards. I do think that is adding to my symptoms.
Hang in there. I hope you can get some solid answer soon.

Quote:
Thanks so much for taking the time to answer my questions. I really appreciate it.
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