Author Topic: Diamox and Sodium Bicarbonate  (Read 15134 times)

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jubby

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Diamox and Sodium Bicarbonate
« on: April 14, 2008, 04:29:36 PM »
Hi,

My daughter was diagnosed in January with BIH and has just started medication and I was wondering if anyone could answer some questions for me.

Charlotte was put on Diamox 250g x 4 daily these were working fine except bad acne and rashes on neck anybody else suffered this? After 2 weeks she was given a blood test, we were called back to the hospital as Charlotte's bicarb levels were low, they should be between 25-35, hers were 19, she was started on Sodium Bicarbonate 500mg 10 tablets a day ( 5 morning 5 evening). Every 2 weeks we have been going for blood tests and her bicarb levels are still low at present 17. She now has to take 26 sodium bicarbonate 500mg a day! In total she is on 30tablets a day, I was wondering if anyone else is on sodium bicarbonate and do they take as many?
Thanks Julie

didles

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Re: Diamox and Sodium Bicarbonate
« Reply #1 on: April 14, 2008, 11:44:05 PM »
Hi there,

I just had a dig through my medical notes and my salt levels were down in hospital and that goes when I was on a does of 500mg 4 times a day. I do remember I took salt tablets but can not find them on the charts. Just wanted to let you know so you don't feel like they only one.

Diana

Offline x Shelly x

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Re: Diamox and Sodium Bicarbonate
« Reply #2 on: April 15, 2008, 11:36:41 AM »
Hi Julie,

  Welcome to the IIH forum,  :hug.  My daughter Katie age 13 also developed bad acne and a neck rash since starting on Diamox last September. How old is Charlotte? Katies initial dose was 750mg a day, they upped in to 1500mg a day back in January after an LP showed that her CSF pressure had risen again.  4 weeks after she started the higher dose they did blood tests to check the balance of salts in the blood (Diamox is known to affect the balance of salt levels, that is why the blood tests are done.)  We were told that the blood test results were all within normal range and they have not asked that she goes for more or started her on any other medication.

  If I were in your situation I would think that the low bicarb levels would have something to do with the acne and rash but because Katie's blood tests came back normal I am of the opinion that maybe the acne and rash is a side effect of the Diamox.  Saying that we know that hormones can play a part in IIH so maybe the acne and neck rash appeared just because her hormone levels might be over the place, but as her hormone levels have not been tested who can tell. lol

  I aked for peoples thoughts on the subject of Acne since starting Diamox a while ago, http://www.iihsupport.org/index.php?topic=3536.0

  We get to see a neurologist for the first time on May 19th and this subject is one of the things I intend to ask him about..

  Michelle and Katie
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Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

jubby

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Re: Diamox and Sodium Bicarbonate
« Reply #3 on: April 15, 2008, 04:13:28 PM »
Thanks for replies,

 Charlotte has just turned 16, what puzzles me is that with the amount of salt tablets being taken you would think the levels would go up but they are still going down, had another blood test today so will get results tomorrow then will ask her doctor. Charlotte's consulatant hasn't passed her over to a nurologist yet, will do shortly she said. Having to go for a MRI on Friday as her eyes are worsening.

Offline x Shelly x

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Re: Diamox and Sodium Bicarbonate
« Reply #4 on: April 15, 2008, 04:47:35 PM »
I would have thought that Charlotte's salt levels would have increased taking all those Bi-carb pills.  :eek

 Katie has been treated by a peadiatric consultant at our local hospital.  After her visits he has contacted a neurologist at another hospital and between them they decided the next route to take.  This has been going on now for 7 months.  After our last visit we were told that the neuro actually wanted to see her.  I think that maybe they thought that the Lp's and Diamox would 'cure' the IIH but as it is still there she needs more than her consultant at our local hospital can give her..

  Katie has never had an MRI..Just a CT scan when she was first ill and admitted to hospital.  It was the type where they inject dye then take the scan.  I'm sure it has a proper name.  :lol  Her eyes are checked at our local Eye Infirmary, her next appointment there is June 2nd..but we are pretty sure that they are improving rather than worsening so the Diamox seems to be doing it's job.  She has no double vision any more and at her last visit we were told that the pap is almost gone.  The main problem with her eyes is the blacking out of vision if she gets up to quickly from a laying position.

  Katie is really looking forward to seeing the neurologist.  We have lots to ask him...Katie just hopes he doesn't order another LP.. :frown  (What were Charlottes LP readings?).

   Michelle
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Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

jubby

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Re: Diamox and Sodium Bicarbonate
« Reply #5 on: April 16, 2008, 03:57:06 PM »
Charlotte's reading for her lp was 34.

Offline Caro

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Re: Diamox and Sodium Bicarbonate
« Reply #6 on: August 27, 2009, 09:16:10 PM »
Hi, Charlotte's mom.  This is William's mom.  :uwave

How did the sodium bicarbonate work out?  My son just had some bloodwork, and his neurologist called to say his CO2 (carbon dioxide) was low, and he should take a quarter teaspoon of baking soda three times a day!  I remembered seeing the sodium bicarbonate thread, and I asked her if this was a side effect from the Diamox?  She didn't know..but she called me back a few hours later to confirm that it could be.  Doesn't this forum just keep us one step ahead of the doctors sometimes?    :cool2

ANyway, baking soda tastes horrible!  I'm thinking of asking about th etablets next week at our appointment.  Did they help?  Was Charlotte in need of sodium bicarbonate for as long as she takes Diamox?

On a positive note, I am happy to report that the Diamox seems to be working for William.  The headaches are not daily, and the double vision is gone. His math skills are returning, which is a great relief.

Thanks.

Offline Noreen

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Re: Diamox and Sodium Bicarbonate
« Reply #7 on: August 27, 2009, 10:14:51 PM »
Hi William's Mom, Conor had the same experience with Diamox and he had to take sodium bicarbonate and Potassium supplements. Glad to hear Williams headaches and doubled vision has improved.  :hug Noreen.
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jubby

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Re: Diamox and Sodium Bicarbonate
« Reply #8 on: August 28, 2009, 07:32:04 AM »
Hi Williams mum


Charlotte is still taking sodium bicarbonate daily. The reason this happens is because the diamox is a diuretic, Charlotte wee's all the goodness away  :rotfl, she has regular blood tests and also a yearly kidney scan. One thing you need to remember is you still need to drink as much as normal because if not the kidneys dry out.

The ideal blood results should be between 26-30, Charlotte's is usually around 18/21.There is a simple blood test   (blood gas test) available where Charlotte's blood is taken from the tip of a finger via a glass straw, they then run this through a machine that takes 10 seconds and gives you the results instantly.

Hope that this has helped, do write again or pm me if you want further help.

Let me know how you get on

Take care
Julie  :hug

Offline Caro

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Re: Diamox and Sodium Bicarbonate
« Reply #9 on: August 28, 2009, 06:12:47 PM »
Thanks, Charlotte's mom!  I am adding the finger-stick test to my list of questions for next week's neurology appointment. 

We've now tried burying the 1/4 teaspoon of baking soda in ice cream and pudding, but neither one can disguise the taste.  At least my son is laughing about it!  Since it wont' hurt anyone to take baking soda, my daughter and I tried it with him--mixed in plain water--and we all made faces and stuck out our tongues!    :tongue It's the most fun "medicine" yet.  But I will be asking for the tablets next week.

Cheers,
Caro a.k.a. William's mom.

jubby

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Re: Diamox and Sodium Bicarbonate
« Reply #10 on: August 29, 2009, 09:12:58 AM »
 :roflmao

Let me know how you get on


The other way of getting some sodium bicarbonate is by drinking  Cranberry juice....................... Charlotte would need over 100 litres a day for it to work!!!!!!!!!!!!!!!!! :eek :eek


Offline babbles

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Re: Diamox and Sodium Bicarbonate
« Reply #11 on: November 18, 2009, 10:38:10 PM »
I just wonder

Could the diamox be responsible for the rash of spots that have appeared on my back and the top of my arms??

Offline Caro

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Re: Diamox and Sodium Bicarbonate
« Reply #12 on: November 19, 2009, 06:05:30 AM »
Hi, Charlotte's Mom.  This is William's Mom again.  Like Charlotte, Williams levels did not improve with the sodium bicarbonate, so they increased it to 1/2 teaspoon of baking soda dissolved in plain water, three times a day.  I did look into doing the tablets, because the baking soda tastes awful, but he would have to take 12 tablets a day! He decided drinking the ounce of water and baking soda was better than swallowing all those tablets.

So...if Charlotte is sick of sodium bicarbonate tablets, she could try the baking soda in water and see if she can tolerate the taste. Here's the conversion from the Web:

Approximate Equivalent Dose of Sodium Bicarbonate Powder and Tablets
Sodium Bicarbonate Tablet 650 mg tablet (7.6 mEq sodium) = 1/8 teaspoon baking soda (6.7 mEq sodium)

Cheers,
Caro

jubby

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Re: Diamox and Sodium Bicarbonate
« Reply #13 on: November 24, 2009, 10:53:23 PM »
Thanks for that. :coolup