Diamox

Hondo
Hondo Member Posts: 6,636 Member
edited August 2011 in Head and Neck Cancer #1
I have been on Diamox for about 5 or 6 months, it was to help with the excess water build up on the brain, now that I am off of it everything taste like salt. For a while I was thinking my wife is just using too much salt in everything. But now even my bottled water tastes salty, the Diamox made all my food taste different while I was on it, I was hopping now that I am off of it my taste will come back.

Anyone of you ever had to use Diamox.

Just another side affect to this life I guess.... happy happy happy joy joy joy
Hondo

Comments

  • robinleigh
    robinleigh Member Posts: 297
    #2
    Salty
    Taste was a huge issue for my husband but he was not on diamox. He actually felt like he had grains of salt in his mouth and every doctor or nurse practioner that we talked to about it acted like they had never heard that before. They kept repeating that a metallic taste was what was usually complained about. Anyhow, he seemed to think sweet things were most agreeable and after a few weeks the saltiness passed. It was absolutely no fun for the time it lasted but, it did end is the good news. Best wishes, robinleigh
  • Hal61
    Hal61 Member Posts: 655
    #3
    Try and trick yourself
    Hi Hondo, this is a new one. I don't know how to treat the cause, but my simple mind is thinking you might try squeezing some lime or lemon on your food and in your water, acid to counteract the salt. You might be able to determine if it's your brain or your tongue that way. I guess you could just bite into a lemon slice too, see it it tastes salty. If it does, your brain may just need to adjust to the weaning off diamox. I'd have to guess it would be temporary in that case, since you had no trauma.

    Hope it goes away soon.

    Hal
  • robinleigh
    robinleigh Member Posts: 297
    #4
    Hal61 said:

    Try and trick yourself
    Hi Hondo, this is a new one. I don't know how to treat the cause, but my simple mind is thinking you might try squeezing some lime or lemon on your food and in your water, acid to counteract the salt. You might be able to determine if it's your brain or your tongue that way. I guess you could just bite into a lemon slice too, see it it tastes salty. If it does, your brain may just need to adjust to the weaning off diamox. I'd have to guess it would be temporary in that case, since you had no trauma.

    Hope it goes away soon.

    Hal

    That reminded me
    My husband really enjoyed lemonade mixed with tea during that salty phase. Also known as an "Arnold Palmer"!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    robinleigh said:

    That reminded me
    My husband really enjoyed lemonade mixed with tea during that salty phase. Also known as an "Arnold Palmer"!

    Hondo, was everything salty
    Hondo, was everything salty when you were on the medication or only when you went off?

    Robinleigh, everything savory tasted super saltly to me after radiation. Sweets were better for me. Seems we are in the minority. Most find that they have more trouble with sweets. The salty issue has gotten a bit better these last couple months, but I still cannot use salt or processed foods and I find some stuff that has reduced salt are fairly tolerable. Only took two years.
  • robinleigh
    robinleigh Member Posts: 297
    #6
    sweetblood22 said:

    Hondo, was everything salty
    Hondo, was everything salty when you were on the medication or only when you went off?

    Robinleigh, everything savory tasted super saltly to me after radiation. Sweets were better for me. Seems we are in the minority. Most find that they have more trouble with sweets. The salty issue has gotten a bit better these last couple months, but I still cannot use salt or processed foods and I find some stuff that has reduced salt are fairly tolerable. Only took two years.

    Sweet
    It's such a roller coaster ride of what is appealing from one week to the next. Maybe we should publish a cookbook...it would have a very interesting table of contents! Everyone here could submit their favorite recipes...
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    robinleigh said:

    Salty
    Taste was a huge issue for my husband but he was not on diamox. He actually felt like he had grains of salt in his mouth and every doctor or nurse practioner that we talked to about it acted like they had never heard that before. They kept repeating that a metallic taste was what was usually complained about. Anyhow, he seemed to think sweet things were most agreeable and after a few weeks the saltiness passed. It was absolutely no fun for the time it lasted but, it did end is the good news. Best wishes, robinleigh

    Hi Robin

    Glad the salt and metallic taste finally ended, I too remember when going through treatment that terrible taste in my mouth all the time. Glad to hear the hubby is doing well

    Thanks
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hal61 said:

    Try and trick yourself
    Hi Hondo, this is a new one. I don't know how to treat the cause, but my simple mind is thinking you might try squeezing some lime or lemon on your food and in your water, acid to counteract the salt. You might be able to determine if it's your brain or your tongue that way. I guess you could just bite into a lemon slice too, see it it tastes salty. If it does, your brain may just need to adjust to the weaning off diamox. I'd have to guess it would be temporary in that case, since you had no trauma.

    Hope it goes away soon.

    Hal

    Hi Hal

    I too am hopping it is temporary but it’s been this way now for 3 weeks, just hopping this side effect get going and moves on. I will try the lemon and lime thing and see what happens with it, but I don’t think it is my brain, but thinking about that there may not be much brain left there.

    The salt taste is in everything from food to water to juice, oh well just another part of life I guess.

    All the best my friend
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    sweetblood22 said:

    Hondo, was everything salty
    Hondo, was everything salty when you were on the medication or only when you went off?

    Robinleigh, everything savory tasted super saltly to me after radiation. Sweets were better for me. Seems we are in the minority. Most find that they have more trouble with sweets. The salty issue has gotten a bit better these last couple months, but I still cannot use salt or processed foods and I find some stuff that has reduced salt are fairly tolerable. Only took two years.

    Hi Sweet

    No when I was on the Diamox I lost about 50% of my taste and for someone who only has about 75% of taste that is a lot. I also had a lot of problems with my Lungs as I felt like I could not breathe; it was like an elephant sitting on my chest all the time. Doctors wanted me to stay on the stuff but I told them it is killing me and I am getting off of it if my body doesn’t need it anymore. So here I am 3 weeks later and still having side effect from the stuff.

    Oh well just another part of life I guess

    Thanks
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
    robinleigh said:

    Sweet
    It's such a roller coaster ride of what is appealing from one week to the next. Maybe we should publish a cookbook...it would have a very interesting table of contents! Everyone here could submit their favorite recipes...

    I'm still working on my
    I'm still working on my recipes, lol. Maybe one day my cookbook will come to fruition. :)

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