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Mestinon Working!


Dizzy Dame
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Hi all,

I just thought I'd post something positive. I started mestinon yesterday and today began taking it in conjunction with my midodrine. I just did an orthostatic series and look at those beautiful numbers:

Supine: 72 bpm

Sitting: 78 bpm

Standing:

1 min- 103 bpm

5 min- 105 bpm

10 min- 108 bpm

I know these aren't the most beautiful numbers in the world, but compared to my normal standing HR of 130-150 bpm after 10 minutes of standing a ~30 bpm drop is really, really encouraging. Plus the nausea and dizziness when I stand has been lessened. I still feel woozy when I stand, but nothing like normal.

I'm going to be increasing my dose of midodrine and mestinon in 1 week from 5mg midodrine and 30 mg mestinon, to 7.5mg midodrine and 60 mg mestinon. I'm hoping that little increase will be even better for my heart.

Okay, thanks for listening. I just had to post because this is the best I've felt since getting sick...which has been a loooong time of feeling really, really poopy.

Hugs,

Lauren

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Dayna,

I started out yesterday by taking it alone. Unfortunately my body has come to depend on the Midodrine to control my hypotension, so I did really badly (I had SUPER low BP and became really tachycardic as my body tried to compensate for my stupid limp-noodle blood vessels :) ). This had much less to do with the mestinon, though, and more to do with my dependence on midodrine.

I think the dose of mestinon right now is so low that it only makes a small difference, however, I'm hoping to feel even more of its effects when I increase my dose next week.

You said you tried mestinon alone and it did nothing, did you try it with your other meds?

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Thanks for the response dizzy

I tried mestinon alone. I got to 120mg with no benifit or side effects. I'm just frustrated and would like to find something that seems to make a real positive effect. I think my next trial will be with modidrine.

Good luck and I hope you continue to improve upon upping each dose :)

Dayna

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Lauren,

I am so glad you have had a break from feeling 'really, really poopy'! :blink: That way of putting it cracked me up. I may have to start saying that instead of using expletives. :)

Can you clarify a bit of something for me? I was wondering why you started the mestinon now? Was that Dr. Chaudry who prescribed that? I was a bit confused and thinking maybe I missed a step after your Hopkins appt. Like, is this an empirical trial that he is hoping might help you figure out what is going on based on your response to the mestinon? Just curious! :huh:

Also, I didn't answer your question under your Hopkins thread about the autoimmune cause of Melissa's autonomic failure b/c I don't know how they figured it out....when I talked to her she said it was a guess, but that she would try at some point to post more details...don't know though with all that is going on for her when she will be able to do that.

Also, this may be soooo ignorant, but what is thymoma (sp?)...and how do you test for it? Is there an 'explanation for dummies' on the web, since I can only read for about two seconds these days?

Anyways, hope you are still feeling 'not poopy'!!! That would be soooo exciting if this sticks! When I have a moment, even a tiny one, I try to think that it's still possible for my body to find it's way back to feeling better and I try to hold on to that.

Goodnight!

Emily

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Hi Emily,

Yes, I use "poopy" to describe how I feel. On really bad days, however, explatives do the trick.

And yes, Dr. Chaudhry thinks I have some kind of autoimmune process that's given me MG and autonomic neuropathy. However, he's an MG specialist, so it would make sense that he'd think I have MG.

I don't know what it means to my condition that the mestinon is working...if it means I really do have MG or not. I know I don't really have many symptoms of MG other than trouble chewing sometimes and occasional trouble swallowing. Most of my neurological problems have to do with numbness, tingling, and muscle twitches as well as (obviously) the autonomic neuropathy.

When I go to see him at the end of the month, I'll be sure to ask if the mestinon's success means that I have MG...but at the same time I know that many POTS patients benefit from mestinon who don't have MG.

I still think that my underlying problem is lyme disease, not an autoimmune response...I have all the symptoms for lyme and an autoimmune condition doesn't explain all of my symptoms, only some of them. I go to see the LLMD next week, so I'll be sure to ask about the positive EMG and the mestinon's success.

Oh, and a thymoma is a tumor on the thymus gland. Dr. Chaudhry thinks that I may have a thymoma that's causing all this trouble (the POTS and everything), but he didn't elaborate. I think if the CT scan comes up positive, he'll tell me more.

Did you ever try mestinon? Did it help at all?

Hugs,

Lauren

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lauren,

i'm on mestinon as well, think for about 2 years now (can't remember exactly) and although it doesn't do wonders, it does help me. my walking got some better (more stable at times), my temperature got MUCH better (i always felt my temperature would fit a dead person, not a living one) and there are a few other things that improved which i can't remember right now. i started very slowly (low dosages) which worked for me. i ALWAYS notice when my body is used to the dosage meaning that i have to increase. i now take 3 times 120mg a day. it seems that this is the right dosage for me but it took me some time to work this out.

hope this helps you!!!

good luck on your mestinon-trip,

corina :rolleyes:

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