May 19, 2009 - 2 comments








I'm still coughing a bit from my bronchitis, but since my numbers are in the green, (asthma), I'm not at all worried about it.  I'm mostly recovered as far as I can tell.  A little wheezing when I laugh, but that's alright.  It sounds funny, which makes me laugh even more!

My blood pressure was higher for most of today.  I had one near faint earlier at the store, but recovered quickly.  I kind of forgot my oxygen at home.  Overall I'm doing good for all of the medication changes...

Yesterday I lowered Trileptal to 150mg, and raised Zonegran to 100mg.  I'm REALLY lucky, because even on this low a dose I haven't had any seizures.  I'm in the process of raising Zonegran, but don't want to go too quickly.  I'll probably leave it where it's at for a couple days.  Today I added B Complex (50mg of basically everything), and restarted Acetyl-L-Carnitine at a lower dose, (250mg instead of 500mg).  I'll start taking Alpha Lipoic Acid later this week, (100mg).

Next week I will hopefully be starting the Mestinon...  Then all I have left to do is raise my Zonegran, and hopefully get off the Trileptal entirely!  Then the rest of my medications are: Toprol XL 25mg 2-3x daily, Theo-24 200mg 2x daily, Ritalin 10mg 4+ daily (every four hours while awake), Prozac 5mg daily, Guaifensin 600mg daily, Symbicort 160 2-4 puffs 2x daily, Saline Neb, CoEnzyme Q10 50mg, Omega 3, etc.  I actually just realized I can't list them all, but still, less than before.

Hopefully I'm nearing the end of these medication changes...  It's becoming tiring.  Though, if I don't start Mestinon I'm going to have a new crisis on my hands.  I'll need to raise my Ritalin and Theo-24 again.  I don't want to be a hyper-caffeinated jitterbug!  :(

Hopefully the doctor agrees to Mestinon instead of raising Ritalin/Theo-24, and hopefully Mestinon works!  (Anyone who has used Mestinon for Dysautonomia, please feel free to let me know how well it had worked for you.)

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by AireScottie, May 21, 2009
Mestinon made a big difference for me when I started it.  I went from having trouble getting to work at all to working about 30 hours a week every week.  I stayed that way for about 9 months, then started downhill again.  In my case, though, I have progressive loss of autonomic nerves, which is probably why the Mestinon lost effectiveness.  My doctor had me try Adderall XR (like Ritalin) before that, and I had to stop because I was so hyped.  The Mestinon did a better job than the Adderall without the hyperness.  Depending on how it goes, you might have to decrease the Ritalin.  I'd love to know how it works for you.

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by halbashes, May 21, 2009
Wow, it sounds like Mestinon was very helpful to you at first.  That's great!  Were you on Adderall, Midodrine, or Florinef at the same time?  Or anything else if I may ask?  Beta blockers?  I'm sorry it's no longer working for you though.  I hope you will soon find something else that works well.

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