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Let’s talk about Diamox!
Posted: 11 May 2015 05:19 PM   [ Ignore ]  
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Did you see the new vid? I hope it helps!

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 09 May 2012 10:14 AM   [ Ignore ]   [ # 1 ]  
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Yes, saw it, and thank you! I have really, REALLY fought the acidity issue AND my potassium also went south about month 8 on Diamox. Could those RX potassium pills be any more huge? Ugh. Can’t wait to see part two of this! If there is something besides bicarb to help with this issue, that would be AWESOME! As it is, I am taking 12+ bicarb tablets a DAY and “only” two Diamox pills a day (one AM, one PM).

It was also good to hear someone say that when we sometimes think the Diamox is not working it probably isn’t the Diamox, it is the acidity. I have kind of gone round and round with this issue, trying different doses and then recently just stopped the Diamox altogether for about 6 days (trying to see how long it would take for my body to “notice” the Diamox wasn’t on board anymore, as far as symptoms, etc.). I was surprised I didn’t have a headache right away. But, on day 6 my world came crashing down and then I was BEHIND the problem(s) and my body was so ticked off and inflamed I had to go on prednisone for a few days. So, word to the wise, don’t go off it even if you don’t think it is helping!

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Posted: 09 May 2012 06:58 PM   [ Ignore ]   [ # 2 ]  
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ourfullhouse - 09 May 2012 10:14 AM

Yes, saw it, and thank you! I have really, REALLY fought the acidity issue AND my potassium also went south about month 8 on Diamox. Could those RX potassium pills be any more huge? Ugh. Can’t wait to see part two of this! If there is something besides bicarb to help with this issue, that would be AWESOME! As it is, I am taking 12+ bicarb tablets a DAY and “only” two Diamox pills a day (one AM, one PM).

It was also good to hear someone say that when we sometimes think the Diamox is not working it probably isn’t the Diamox, it is the acidity. I have kind of gone round and round with this issue, trying different doses and then recently just stopped the Diamox altogether for about 6 days (trying to see how long it would take for my body to “notice” the Diamox wasn’t on board anymore, as far as symptoms, etc.). I was surprised I didn’t have a headache right away. But, on day 6 my world came crashing down and then I was BEHIND the problem(s) and my body was so ticked off and inflamed I had to go on prednisone for a few days. So, word to the wise, don’t go off it even if you don’t think it is helping!

Yes, there are a few ways to fight that acidity, and I’ve tried them all! I’ll try to spare you the one that had me burping alfalfa all day. ha. As the HEAD guinea pig, I know exactly what you mean by ticking off your body! Been there! smile I’m glad you were able to get back to baseline! smile

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Posted: 11 May 2012 09:10 AM   [ Ignore ]   [ # 3 ]  
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hi ourfullhouse, do you mind sharing how many mg of bicarb are in your pills and how many mg of diamox you’re taking? 

my wife can’t seem to stay alkaline even though she’s only on 62.5mg of diamox 3x day.  now she’s actually trying calcium carbonate instead of bicarb (anyone else have any experience with this?). she’s also trying pretty hard to avoid acidic foods.  i have a feeling that the propranolol isn’t helping this issue and we’re working on taking that down too.

ourfullhouse - 09 May 2012 10:14 AM

Yes, saw it, and thank you! I have really, REALLY fought the acidity issue AND my potassium also went south about month 8 on Diamox. Could those RX potassium pills be any more huge? Ugh. Can’t wait to see part two of this! If there is something besides bicarb to help with this issue, that would be AWESOME! As it is, I am taking 12+ bicarb tablets a DAY and “only” two Diamox pills a day (one AM, one PM).

It was also good to hear someone say that when we sometimes think the Diamox is not working it probably isn’t the Diamox, it is the acidity. I have kind of gone round and round with this issue, trying different doses and then recently just stopped the Diamox altogether for about 6 days (trying to see how long it would take for my body to “notice” the Diamox wasn’t on board anymore, as far as symptoms, etc.). I was surprised I didn’t have a headache right away. But, on day 6 my world came crashing down and then I was BEHIND the problem(s) and my body was so ticked off and inflamed I had to go on prednisone for a few days. So, word to the wise, don’t go off it even if you don’t think it is helping!

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Posted: 11 May 2012 01:45 PM   [ Ignore ]   [ # 4 ]  
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I am taking 125 mg of diamox twice a day and taking 12-14 650 mg bicarb tablets a day. I just got labs back today that finally have my C02 in the normal range! First time in MONTHS! For some of us, it takes a LOT of bicarb to buffer the acidity from the diamox apparently.

I couldn’t handle being on propranolol… made me pass out. Just found out I actually do have hyper POTS, so different group of meds to treat that than “garden variety” POTS.

Hope that helps!

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Posted: 11 May 2012 02:26 PM   [ Ignore ]   [ # 5 ]  
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thanks for sharing ourfullhouse. 

yeah it sounds like we need to up my wife’s carbonate dosage.  does anyone have knowledge/experience taking both calcium carbonate (tums) and sodium bicarb at the same time?  also anyone know of a benefit of one vs the other?

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Posted: 11 May 2012 06:34 PM   [ Ignore ]   [ # 6 ]  
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I haven’t heard of using calcium carbonate instead of bicarb, so I don’t think it is the same. The only thing I have heard is that taking calcium citrate can help reduce the tendency to form kidney stones (because of the Diamox and bicarb).

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Posted: 11 May 2012 06:37 PM   [ Ignore ]   [ # 7 ]  
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oh okay, thanks. 

we were told by one of our docs that you could take calcium carb instead, that they would do substantially the same thing.

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Posted: 11 May 2012 06:56 PM   [ Ignore ]   [ # 8 ]  
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From what I remember and what I just read I don’t think that is exactly right. Here is a Q & A I found:

” Acetazolamide mechanism of action.?
Does anyone know the mechanism of diuresis caused by acetazolamide? I know it is a carbonic anhydrase inhibitor but how does this cause H+ retention and bicarbonate excretion? 


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  The reaction of carbonic acid (H2CO3) to water and CO2 is catalized by carbonic anhydrase, but it’s inhibited by acetazolamide, which leaves carbonic acid which is unstable and becomes hydrogen ion (H+) and bicarbonate ion (HCO3). The H+ gets reabsorbed by the renal tubules and the bicarb is excreted in the urine.”


I believe because Diamox/Acetazolamide causes bicarb to be excreted in the urine is why bicarb is the base/buffer we are recommended to use.

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Posted: 11 May 2012 10:39 PM   [ Ignore ]   [ # 9 ]  
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thanks ourfullhouse.  can you tell me where you found that (if it was online)?

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Posted: 16 May 2012 10:46 AM   [ Ignore ]   [ # 10 ]  
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tonkadu - 11 May 2012 10:39 PM

thanks ourfullhouse.  can you tell me where you found that (if it was online)?

I second that! smile Great find, ourfullhouse! A decent group to converse with onn this is any forum related to “pseudo-tumor cerebri” or “idiopathic intracranial hypertension”. These folks face the same issues we do. I will do some more research, too, just as soon as I finish this article for publication! Whew! Time FLIES by, doesn’t it? Thank you so much, y friends for helping us all with this issue… smileDiana

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Posted: 12 June 2015 07:30 AM   [ Ignore ]   [ # 11 ]  
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Hello Dr Diana, hello all!

This is my first post. Apologies if this has been covered elsewhere, I have been reading but may have missed it. I recently tried an evening dose of diamox and I am wondering if what I experienced was a side effect, or perhaps an indication that it is/is not something that will work for me. After taking it I experienced a very strange tingling numbness from my right eye extending over the top right side hand side of my head (a very precise area, the strange sensation did not extend to the other parts of my head/face). This tingling/numbness was in the exact location where I experience migraine headaches (or what I have always considered to be migraine headaches) but was a different sensation to those headaches. Additionally, I didn’t experience the huge amount of relief in the morning as others have described, but am wondering if it is worth experimenting further. I have EDSIII, POTS, NMH, MCAS etc.

I was wondering if anyone has any thoughts?

Thank-you!

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Posted: 12 June 2015 09:56 AM   [ Ignore ]   [ # 12 ]  
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Great question! Diamox causes numbness and tingling (and sort of crawly sensations), especially in the hands and feet for about two weeks, and then it stops. I DID take it once after years of not needing it, and felt these sensations on one side of my face, and in patches throughout my body. It scared me, because I sort of forgot what this paresthesia felt like! Sure enough, it went away, no harm done. Of course, no one can tell you the reason YOU experienced what you experienced, but please know that I’ve seen some FUNKY initial responses! Oh, if your CO2 is low, or if your pressure is crazy high, you may not notice much effect, if any. Did you check your CO2?

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Posted: 12 June 2015 10:15 AM   [ Ignore ]   [ # 13 ]  
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Thanks for your thoughts! I did not check my CO2 levels, I will look into that if I try again. Thanks grin

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