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Hi
Just wanted to give a quick update. My daughter is still doing fabulously on the Diamox. Her headache is gone and she is able to be so much more active than she was before.We had a follow up appt with the PA who prescribed the Diamox for us – he gave us both high 5’s and was so happy for our success.
I did want to share one thing he said because it made me smile and I thought I needed to share it with Dr. D.
He said ‘Gosh, I bet the lady who came up with this theory has taken a lot of criticism, hasn’t she?’ When I said ‘yes, there has been some criticism and resistance’, he replied, ‘Well, look at Dr. Heimlich. Everybody criticized him but look at how many lives he saved because he stuck with it.’ So, he sort of compared Dr. Diana to Dr. Heimlich and I liked that a lot – because she has been a lifesaver to us!
Oh my gosh…I’m a little late on this discussion, but have just finished reading it. Beth, that is indeed a miracle!!! I am SO glad that you found a doctor who actually “listened” to you! I can’t tell you how happy I am for Emily too! Just from reading…I felt like I was following your journey, and I LOVE happy endings!! 😉
AMEN!! That was quite a journey for Beth and her daughter, but they crossed the finish line! I’m also so happy for them both. 🙂
Hi
Just wanted to give a quick update. My daughter is still doing fabulously on the Diamox. Her headache is gone and she is able to be so much more active than she was before.We had a follow up appt with the PA who prescribed the Diamox for us – he gave us both high 5’s and was so happy for our success.
I did want to share one thing he said because it made me smile and I thought I needed to share it with Dr. D.
He said ‘Gosh, I bet the lady who came up with this theory has taken a lot of criticism, hasn’t she?’ When I said ‘yes, there has been some criticism and resistance’, he replied, ‘Well, look at Dr. Heimlich. Everybody criticized him but look at how many lives he saved because he stuck with it.’ So, he sort of compared Dr. Diana to Dr. Heimlich and I liked that a lot – because she has been a lifesaver to us!
Thank you for telling me this, Sweetie. You made my day… Please give the PA a high 5 and a hug for me, too, OK? Heck, for ALL of us! 🙂
Hi again,
Back with a bit of an issue. My daughter is finding that her headache is becoming a problem again – she is very dizzy (lightheaded/faint) and light and sound sensitive again, as well. Her headache had been gone entirely on the Diamox. We have increased the dose – now she takes 125 mgs morning and night. Increasing the dose has seemed to help, but her headache is still significant (hovers around a 6/10) and it never goes away now (only ever reduces to a 2/10).We just got bloodwork done to check her CO2 levels – should hear back in the next few days what the results are. In the meantime, we have baking soda capsules for her to take. If her CO2 levels are too high, is it typical for the Diamox to just not work quite as well? Or would it stop working entirely?
Also, I wanted to ask how much barometric pressure can effect ICP… These headaches started a couple weeks ago when we had a couple nasty weather systems passing through and I was hoping it was causing a temporary problem. But, the storms passed and the headaches didn’t – although they do seem to worsen when the weather is bad and are better when the weather is clear. Anyway, I just watched the CSSVI video and Dr. D mentioned barometric pressure and it reinforced what I was thinking. Could barometric pressure changes have tipped her ICP to the point of having more problems, particularly if her CO2 levels are iffy?
Thanks! We may end up seeing our physicians assistant who prescribed the Diamox, so I would love to have some info for him from the people who really know about this!
Hi again,
Back with a bit of an issue. My daughter is finding that her headache is becoming a problem again – she is very dizzy (lightheaded/faint) and light and sound sensitive again, as well. Her headache had been gone entirely on the Diamox. We have increased the dose – now she takes 125 mgs morning and night. Increasing the dose has seemed to help, but her headache is still significant (hovers around a 6/10) and it never goes away now (only ever reduces to a 2/10).We just got bloodwork done to check her CO2 levels – should hear back in the next few days what the results are. In the meantime, we have baking soda capsules for her to take. If her CO2 levels are too high, is it typical for the Diamox to just not work quite as well? Or would it stop working entirely?
Also, I wanted to ask how much barometric pressure can effect ICP… These headaches started a couple weeks ago when we had a couple nasty weather systems passing through and I was hoping it was causing a temporary problem. But, the storms passed and the headaches didn’t – although they do seem to worsen when the weather is bad and are better when the weather is clear. Anyway, I just watched the CSSVI video and Dr. D mentioned barometric pressure and it reinforced what I was thinking. Could barometric pressure changes have tipped her ICP to the point of having more problems, particularly if her CO2 levels are iffy?
Thanks! We may end up seeing our physicians assistant who prescribed the Diamox, so I would love to have some info for him from the people who really know about this!
HI Beth,
YES! Baking soda capsules are a MUST. If her CO2 goes to 22 or below, Diamox won’t work (trust me. BEEN THERE). We are usually at a “tipping point”, where even small changes in pressure affect us a lot (like barometric pressure). To get a bit more wiggle room, you need to get her more alkaline and KEEP HER more alkaline. Start today! Capsules work best for us, but some people dissolve it in water and drink it. I actually ATE IT out of the box one very desperate day! Be sure that you are watching her potassium levels, too, OK? My cardiologist had me check my CO2 and potassium every 2 WEEKS until I convinced her I was stable, and able to tell when things changed.
Let us know how her blood work comes out, but you don’t need to wait for that to start baking soda, OK? 🙂Thanks so much Dr. D,
You had told me to start her on baking soda in the beginning but I just didn’t do it. She takes so many pills every day and she was doing so well on the Diamox that I wimped out – but she will just have to add in a few more if she wants the Diamox to work. And she does! Being headache free was a very pleasant thing and I know she will do what she needs to do to get there again!I am actually just taking a break from making some capsules right now, so she can start taking them this morning. We won’t be waiting for the blood work results! I grabbed some empty capsules at our local health food store so I could make her some right away but will eventually order a filler kit so it is easier to make them.
Oh, and they are looking at her potassium levels as well, so we will keep an eye on both CO2 and potassium.
Thanks so much for answering so quickly – I know how busy you are. You always give the best advice, even if I didn’t follow all of it originally!
Have a wonderful day!
I got sodium bicarbonate tablets at the local pharmacy very reasonably. 100 for $2. No measuring or making capsules. Our can but them on Amazon too. Just an option if you get tired of playing pharmacist in the kitchen. No prescription needed to buy the sodium bicarbonate (aha baking soda) from a pharmacy.
Thanks PalominoMorgan,
I will check at the store. It *would* be a tad easier to buy them as opposed to making them! Although, my daughter might prefer capsules to tablets but it is worth a try!Thanks again!
I got sodium bicarbonate tablets at the local pharmacy very reasonably. 100 for $2. No measuring or making capsules. Our can but them on Amazon too. Just an option if you get tired of playing pharmacist in the kitchen. No prescription needed to buy the sodium bicarbonate (aha baking soda) from a pharmacy.
Oh, that’s cool, Palomino! It beats paying my daughter 5 cents each to fill them! I thought she would get bored after about 10. NOPE! 71 DOLLARS later, I have almost a lifetime supply! ha.
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