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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Tips for Neptazane nausea and taste dysfunction

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Tips for Neptazane nausea and taste dysfunction

  • This topic has 3 replies, 2 voices, and was last updated 10 years, 11 months ago by Dr. Diana.
Viewing 4 posts - 1 through 4 (of 4 total)
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  • July 4, 2012 at 10:11 am #249
    Wacky?isa
    Participant

    Hi,
    My Neptazane dosage was just changed and the initial side effects are back. So, I thought a thread about how to cope might help people.

    I’m odd in that I can still drink carbonated beverages and without lemon lime soda I might never be apart from my bukkit.
    Tomatoes tend to taste awful now no matter how prepared. I can’t tolerate coffee at all.
    I’m not sure what other foods I can’t stand because it’s been 2 years and we’ve adjusted our diet to include lots of bananas, dried apricots, potatoes, and other high K foods while gradually dropping things I no longer like.
    Beans and rice are a quick bland staple I might not like but I can generally keep down and it doesn’t make me sad necause it ‘tastes wrong’.
    (Beans might not be a good option for those with gastoparesis. ).
    I find that I eat more bland food now that tends to be lighter. I also have to eat snaller more frequent meals to help manage the nausea. That said, I still go through sriracha pretty quickly.
    It’s odd, my nausea is worse on Neptazane but I actually threw up far more often without it.
    What foods do you like on Neptazane/Diamox that you didn’t like before? What foods still work for you?
    Thanks,
    Lisa

    July 9, 2012 at 9:01 pm #2565
    Dr. Diana
    Keymaster

    Hi,
    My Neptazane dosage was just changed and the initial side effects are back. So, I thought a thread about how to cope might help people.
    Tomatoes tend to taste awful now no matter how prepared. I can’t tolerate coffee at all.
    I’m not sure what other foods I can’t stand because it’s been 2 years and we’ve adjusted our diet to include lots of bananas, dried apricots, potatoes, and other high K foods while gradually dropping things I no longer like.

    What foods do you like on Neptazane/Diamox that you didn’t like before? What foods still work for you?
    Thanks,
    Lisa

    Hi Lisa, I’m curious if you’ve tried any mast cell medications. One reason I ask is that many of your staples are high in histamine and may be causing mast cell reactions, which cause vessel inflammation, which causes higher intracranial pressure (did you follow that?). If mast cells aren’t an issue for you, no biggy…. I must be a freak I have never noticed ANYTHING tasting differently with Diamox. I’ve heard that Dr. Pepper lovers would rather jump off a bridge than take Diamox because Dr. Pepper tastes lousy… Me? Carbonated beverages taste fine… So I guess I’m the wrong person to ask, huh? 😉 Diana

    July 10, 2012 at 2:28 pm #2566
    Wacky?isa
    Participant

    Hi,
    Well, I oopsed my dose got tripled, not doubled.
    I do seem to have some mast cell issues but can’t find a doc to specifically address them. Claritin, Pepsid, and Benadryl are my current med based tools for that.
    I guess I’ll have to re-check the list of foods that are high in histamine and do what I can within our limits. High K, low histamine foods we can affird…good thing I’ve pretty much given up enjoying food. 🙂
    I actually don’t remember the side effects being as bad on Diamox as they are on Neptazane now that you mention it. But, at 300 mg a day I’ll be happy just to dodge kidney stones.
    On going from 100 mg to 200 mg I had the best 36 hours I’ve had in months so there’s real hope that once insurance is worked out I’ll be functioning better even if I want to puke the whole time. :).
    My goal at the moment is to make the most of the productive time Neptazane gives me because I don’t know how much longer I’ll be able to get scripts for it.
    Thanks for replying.
    Lisa
    edit: is this the best list of histamine containing foods? http://www.chronichives.com/pages/lowhistamine.htm#allowedrestricted. Is ther anything not on it you’d add?

    July 10, 2012 at 7:25 pm #2569
    Dr. Diana
    Keymaster

    Hi ?isa!
    Fascinating — the side effects are worse on Neptazane, huh? As far as the “best” article on histamine foods, I really don’t have a favorite. I try to follow the basic guidelines without getting too anal about it. 😉 This video sums it up for me fairly well:
    http://prettyill.com/videos/watch/what_are_histamine_foods
    Everyone is different, but Claritin did NOTHING for me when I was first sick. It was Zyrtec or nothing for me. Did you try zyrtec, Hon?

    When my candida was raging AND I wanted to stay away from histamine, a friend went to a health food store to see what I could eat. The answer? Basically NOTHING. ha.

    Everything is a juggle… I WOULD recommend bringing in a nephrologist or urologist to help prevent kidney stones. I love mine. Our family drinks delicious lemonade (artificial sweetner) ALL DAY LONG, and haven’t had any more problems. But we watch it pretty closely.
    Just curious — do you have an MRI you could share with me? Did you ever get an MRV?
    Thank you, my friend,
    Diana

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