A Few Diamox Questions

[kamillean]

I was wondering if someone could help answer a few questions I have about diamox? My daughter started taking it about 2 months ago. I wasn’t aware that she should also be taking something to control stomach acid, to help it work better. I am a little confused about what she should take and how much she should take…sodium bicarbonate? baking soda? something else? Doasge? Number of times a day? Currently, she is taking 125 mg of Diamox in the a.m., 125 mg in the afternoon, and 250 mg in the evening. It has helped her severity of headaches, but it has made her extremely tired! We just added in Zyrtec and Zantac (to kind of see about the Mast Cell thing–she doesn’t get tested till May for that). Does the Zantac help with the stomach acid? Or does she still need something else like sodium bicarbonate? Has anyone else experienced the extreme fatigue my daughter is experiencing?

Any help with any of these questions is greatly appreciated!

Kamillean

[Beth]

Hey Kamillean,
I don’t have all the answers – in fact, I have some of the same questions! But, I will say what we are doing for my daughter and hopefully others will chime in with more info.

My daughter is now on 125 mg of Diamox 3x a day. One dose at night had been working perfectly for almost 4 months until the headaches suddenly returned. Adding a morning dose helped some but the headache is still a problem and is quite variable from moment to moment and hour to hour. We just added the 3rd dose – she hasn’t taken it yet so we will see how that works.

We got bloodwork done to check her CO2 levels (and potassium, sodium, etc). I have read that the normal range for CO2 is 22-32, although our doctor said the bottom range is 21. Em’s CO2 level was 23 – he said it is in the normal range so it isn’t a problem – but I do feel that being on the low end of normal, she was getting too acidic and maybe that was minimizing the effect of the Diamox.

We had started her on baking soda capsules as soon as she had the bloodwork done, per Dr. D’s advice. (I purchased empty gelatin capsules at a health food store, you can also order them online. There is a kit you can order to make filling them much easier, but I have developed my own little system that is doable for now. Oh, and you can purchase baking soda tablets cheap at a pharmacy but my daughter ‘needs’ the capsules and I don’t feel like arguing with her! Tablets would be much easier than fiddling with filling the capsules – the things we do for our kids!)

She takes 5 baking soda capsules a day – but I really have no idea on how many she needs to take. I read online of people taking high doses of diamox taking lots – like 12 or more a day, to regulate their CO2. The capsules we have hold 250 mgs – I guess 5 would be 1,250 mgs a day. It doesn’t seem to be doing much, so maybe we need more until it regulates? It is so hard to tell – I think it might be working – the headaches aren’t as bad as they were initially, but we have also added additional doses of Diamox and the headaches are still a problem so I just don’t know. The 5 she takes are spread out through the day, maybe she needs to take them all at once?

I am starting to wonder if we need to look into CCSVI – but I think I will start a new thread for that question.

My daughter also takes Zyrtec and Zantac. She is on 150 mgs of Zantac 2x a day. I don’t know if that will do anything for the CO2 level…

Kamillean, it is really good to hear from another mom who is dealing with the same issues! Hopefully we can get answers for our girls!

[jhsmom]

Hi,
I too have question regarding diamox and acid stomach.

Our first trial with diamox didn’t do anything not even as a dieretic. When I looked at her blood work I did see co2 was good at 29 but Alkaline phosphate low at 89. If this is low dose that indicate that acid is high?

Anyway, we are going to give it another try with sodium bicarbonate to reduce acid. On a weekend were I can make sure to watch to make sure she does not get dihydrated. We purchased tablets 325mg or sodium bicarbonate at the store and plan to give them along with the diamox trial. I am assuming it would be best to take them right with the diamox dose?

She will not drink them when desolved in H2O. Is it best to swallow them whole? Is there any worry about having the bubbly acton take place in the stomach?

I was also wondering if zantac would reduce acid enough to let the diamox work?

If anyone who has success with diamox could give any insite I know the ywo mom’s above and I would be very interested.

Thanks.

[tonkadu]

My wife and i have been wondering the same thing. I also would like to additionally ask if anyone knows if extra baking soda / sodium bicarbonate should be taken with diamox if the patient is also on propranolol. Any further info any one can share would be most appreciated!

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