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Has anyone taken Florinef and diamox together? Can it be done?
Posted: 01 December 2013 06:13 PM   [ Ignore ]  
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Has anyone taken Florinef and Diamox together?  can this be done?

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Posted: 05 December 2013 06:31 PM   [ Ignore ]   [ # 1 ]  
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Did you ask your doctor, my friend? I can tell you that as a patient, I do best with high blood volume and low CSF volume. That is tricky to accomplish! Florinef made me feel like my head was going to explode (actually, that helped me cinch my diagnosis of high pressure). I know a few folks who take Diamox, yet who remain on saline infusions. The way to think about it is that Diamox is only a mild diuretic, and will decrease blood volume only a bit, but it is a BIG participant in the slowing of CSF production. Florinef will increase blood volume. If the volume of blood goes up in your skull, something else must go. If CSF pressure is high, about the only thing to go is brain (down the spinal cord - a Chiari - not so good). So I can see how both Florinef and Diamox could be used—I don’t know of anyone off-hand who is combining the two, however, and as usual, it would be considered “off-label” treatment (as is everything for POTS!). Do you know if your blood volume is low? How about your renin levels? My renin levels were a bit on the low side, but I tolerated Diamox without needing Florinef or saline infusions. Whew! 

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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: 05 December 2013 06:35 PM   [ Ignore ]   [ # 2 ]  
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Our daughters head still hurts while taking Florinef and diamox.  It hurt also when we took her off of Florinef for a week. So dr wants to do a spinal tab to check pressure. She has chiari1, ehlers 3, and dusautonomia.  What do you think?

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Posted: 05 December 2013 07:27 PM   [ Ignore ]   [ # 3 ]  
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Jess - 05 December 2013 06:35 PM

Our daughters head still hurts while taking Florinef and diamox.  It hurt also when we took her off of Florinef for a week. So dr wants to do a spinal tab to check pressure. She has chiari1, ehlers 3, and dusautonomia.  What do you think?

Please understand that I can’t give medical advice, certainly not over the internet, right? As a patient and a mom with affected kids, I will tell you that low intracranial pressure and high intracranial pressure can look the same, and unfortunately, we are prone to both! It *really* makes it hard to tell what is going on, even when you’re the patient! Now imagine being the doctor? Sometimes patients can tell if the pressure is high or low by fiddling with the meds, but not always… What can sometimes happen with Chiari is that an LP will reveal high pressure, the CSF is flowing out, then it STOPS, showing “low pressure” as the Chiari “corks” at the top of the spine. Some doctors who are not familiar with our laxity are discombobulated by this. I do want to mention that the last neurosurgeon I spoke to agreed that if an EDS patient ever needs an LP, a blood patch should likely always be done afterwards. Many of us are prone to leaking at the LP site, even years later. Yikes. My daughter can now tell when her pressure is higher, but it took years of “training” to get there! One other mistake I made early on was not watching my CO2 levels closely enough at first. I thought I needed more Diamox, when actually, I was a bit too acidic for Diamox to work well. At that point, I started to check it every 2 weeks, just to be sure! Do you know if your daughter’s CO2 levels are at or above 22? Be sure to work closely with her doctor during this transition (obviously). wink

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Posted: 05 December 2013 09:05 PM   [ Ignore ]   [ # 4 ]  
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No I don’t know her CO2 levels. I am so scared for the doctor to do the lumbar. Im scared its going to leave her with problems like the leaking.  These conditions are a nightmare. thank you.

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Posted: 05 December 2013 10:44 PM   [ Ignore ]   [ # 5 ]  
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Jess - 05 December 2013 09:05 PM

No I don’t know her CO2 levels. I am so scared for the doctor to do the lumbar. Im scared its going to leave her with problems like the leaking.  These conditions are a nightmare. thank you.

Just a friendly reminder for her doctor! I’ve seen a couple of patients whose doctors put them on Diamox and the patients thought they had a bad reaction to it. In actuality, they were suffering from acidosis, made worse by Diamox. It’s an easy mistake, and an easy condition to rectify (usually). Whenever someone says they didn’t do well on Diamox, that is always my first question! I understand your fears, Jess. I had them, too. The reason I opted not to do the LP’s for my son and I was because we became sick and got high(er) pressure after a virus. I thought if we could figure out WHY that happened, that perhaps we could reverse it? A shunt seemed so drastic, and filled with risks. I was afraid they were trying to correct a short-lived problem with a high risk procedure that could leave permanent damage. Will we need a shunt someday? It’s impossible to say, but as long as medication works, we’re there! You may want to join some Facebook groups dealing with high intracranial (and low intracranial) pressure. There are a gazillion, it seems. Lots of folks to chat with about pros and cons/ their experience, etc. There’s some great work being done on non-invasive ways to check pressure…

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Posted: 06 December 2013 02:18 PM   [ Ignore ]   [ # 6 ]  
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We had her blood drawn today and the CO2 is a 18. I know you can’t give advice but can you talk to our doctor and tell him what you have seen other people do.  Im scared th Lp will worsen her.

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Posted: 08 December 2013 03:59 PM   [ Ignore ]   [ # 7 ]  
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The CO2 has to be 22 or above for the Diamox to work. Here are a couple of Dr Diana’s video’s which you might find useful:

http://prettyill.com/videos/watch/lets_talk_about_diamox

http://prettyill.com/videos/watch/diamox_and_alkalinity

To quote from this second video:
When you start on Diamox it’s a good idea to ask your doctor for a standing order for bloodwork which includes a serum CO2 and calcium level as a minimum.

(Here are ways Dr D suggests in the video, to help maintain alkalinity)

* Baking soda capsules, or you can buy the empty capsules at a formulating pharmacy. Dr D says - I just buy a big bag of anything the size that I can swallow. There are some machines that help you make the capsules, e.g. ‘Cap m Quick’. 

* You can buy pills that must be dissolved in water, they are cheap.

* Dr D carries with her Alkaline Drops, put 3-4 drops in anything you drink Dr D cannot tell the difference.  There are Alkaline Machines for your kitchen. 

* There are a few companies that sell Alkaline herbs, it takes a lot to make a difference (and you burp alfalfa!)

* Food makes a great difference in our acidity level but it’s not always intuitive, lemons for example are obviously acidic but the effect of the body is to make it more alkaline, they contains some of the strongly alkaline minerals of
    Potassium
    Magnesium
    Sodium
Oranges will make you acidic because their sugar content is so high, the sugar cancels the alkalising affect.  Most sugar is acidic.

On the acidic side of the spectrum
    White bread
    Alcohol
    Colas soda’s
    Sugars
Mildly acidic foods
    Meat and Fish
    Beans and Peas
    Milk products
    Most nuts
Mildly alkaline foods
    Most Fruits
    Vegetables
    Avocados
    Almonds
Strongly alkaline foods are:
    Asparagus
    Cayenne pepper
    Some citrous fruit
    Kelp
    Greens

PH strips, if you can’t wait for the blood tests. Check your salivary PH levels 2-3 times a day, 1-2 hours after eating and a good target PH is 6.75 or 7.

Hope some of this helps
Barbara
(UK)

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Posted: 08 December 2013 05:56 PM   [ Ignore ]   [ # 8 ]  
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Thanks Barbara. her co2 is 18. She is on Florinef, Topamex, and neuron tin. Do I give her the baking soda while she on these?

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Posted: 09 December 2013 05:00 PM   [ Ignore ]   [ # 9 ]  
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Jess - 08 December 2013 05:56 PM

Thanks Barbara. her co2 is 18. She is on Florinef, Topamex, and neuron tin. Do I give her the baking soda while she on these?

I’m sorry but I’m not knowledgeable in this matter, maybe your GP or pharmacist would be the best person to ask about potential conflicts.

 

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Posted: 14 December 2013 03:35 PM   [ Ignore ]   [ # 10 ]  
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Barbara - 09 December 2013 05:00 PM
Jess - 08 December 2013 05:56 PM

Thanks Barbara. her co2 is 18. She is on Florinef, Topamex, and neuron tin. Do I give her the baking soda while she on these?

I’m sorry but I’m not knowledgeable in this matter, maybe your GP or pharmacist would be the best person to ask about potential conflicts.

Thanks so much, Barb, for pulling all that together for me! About the only change I have in my current recommendations is that machines that change the pH of our water may not be as effective as we had previously thought to change the pH of our bodies. More of that to come later!

I did want to mention that Topamax has some carbonic anhydrase inhibitor in it. I wonder if this is why your daughter may already be acidic? I think doctors tend to forget that some of the ingredients of Diamox are in Topamax, so CO2 measurements need to be monitored. Definitely talk to your doctor, because I’m thinking if they are willing to try Diamox they may want to discontinue Topamax for the trial period. You should be able to take baking soda capsules, no problem, with the medications you mentioned, but as Barb said it is very important to always work for your Dr. Please keep us posted!

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Posted: 24 January 2014 04:33 PM   [ Ignore ]   [ # 11 ]  
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The non-invasive way I deduced, to roughly measure Intracranial Pressure is on post:-

http://prettyill.com/forums/viewthread/712/#3967

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