RSS icon Subscribe to our "new posts" feed in a reader | RSS icon Subscribe to our "forum news" in a reader

IIH International Support Forum. Support. Advice. Information. Set up a direct debit JustGiving
 
IIH Support Forum
November 26, 2014, 02:10:33 AM *
Welcome, Guest. Please login or register.

Login with username, password and session length
 
   Home   Help Search Login Register  
Pages: [1]   Go Down
  Print  
Author Topic: Diamox and Sodium Bicarbonate  (Read 7455 times)
0 Members and 1 Guest are viewing this topic.
jubby
Guest
« 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
Logged
didles
Guest
« 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
Logged
x Shelly x
Member Admin
Administrator
*
Offline Offline

Gender: Female
Posts: 7143



« 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
Logged

Today is the tomorrow you were thinking about yesterday... 



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
Guest
« 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.
Logged
x Shelly x
Member Admin
Administrator
*
Offline Offline

Gender: Female
Posts: 7143



« 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.  laughing  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
Logged

Today is the tomorrow you were thinking about yesterday... 



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
Guest
« Reply #5 on: April 16, 2008, 03:57:06 PM »

Charlotte's reading for her lp was 34.
Logged
Caro
Ganglion
***
Offline Offline

Gender: Female
Posts: 148


« Reply #6 on: August 27, 2009, 09:16:10 PM »

Hi, Charlotte's mom.  This is William's mom.  Smiley: upside down waving smiley

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?    Smiley: cool smiley

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.
Logged
Noreen
Supporter
*
Offline Offline

Posts: 1821



« 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.
Logged

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.
__________________________________________________________

When everything seems like an uphill struggle, just think of the view from the top xxxxx
jubby
Guest
« 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  rolling on the floor laughing, 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
Logged
Caro
Ganglion
***
Offline Offline

Gender: Female
Posts: 148


« 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!    Smiley: 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.
Logged
jubby
Guest
« Reply #10 on: August 29, 2009, 09:12:58 AM »

 Smiley: rolling on the floor laughing

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!

Logged
babbles
Dendrite
**
Offline Offline

Posts: 66


« 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??
Logged
Caro
Ganglion
***
Offline Offline

Gender: Female
Posts: 148


« 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
Logged
jubby
Guest
« Reply #13 on: November 24, 2009, 10:53:23 PM »

Thanks for that. cool
Logged
Pages: [1]   Go Up
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.20 | SMF © 2013, Simple Machines Valid XHTML 1.0! Valid CSS!
Page created in 0.077 seconds with 19 queries.

The IIH Support Forum is designed for educational purposes only and not for providing medical advice. IIH UK and IIH Support are privately owned web sites, run and administered by volunteers. We are not medical professionals. We wish to provide an informative and friendly environment to learn about IIH and offer support for others in similar situations. Views expressed in the forum are entirely those of the author and do not represent those of IIH UK or IIH Support. IIH Support is not responsible or liable for any damages, which may occur as a result of your use or misuse of the information available on this web site.

Direct URLs to content in this site shall not be embedded and linked from within outside web sites (i.e., "Hotlinked") without prior written permission of IIH Support.

Copyright © IIH Support, 2006 – 2014. All Rights Reserved. IIH Support is a Not For Profit site operated for the benefit of the IIH community by volunteers.

Privacy | Terms of Use | Forum Rules | Credits | Design by: NeonBlue Web Design | Database systems © FAT promotions 2013. All rights reserved.