Author Topic: Diamox used to heal?  (Read 1110 times)

sadlisa

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Diamox used to heal?
« on: September 09, 2012, 05:23:08 PM »
Hi everyone

I am new to this forum.  I am very happy to see many of my old friends from another site are here. 

I have been on Diamox for 3 months.  250mg every other day to see if lowering the csf pressure will help me heal.  I was told to try it for 3 months then quit and see how I do.  Have any of you tried Diamox to try and seal your leak?  I worry if I just stop taking it, a spike of pressure will blow any progress I have made in healing.  At this point I do not think I have healed, still get occasional runny nose and other symptoms.

I will be seeing physical medicine Dr. on Sept 25th.  I will keep on this med until I talk to him about my concerns.  Any suggestions or experience anyone has will be greatly appreciated.

Thanks, Thia (sadlisa)   

laural840

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Re: Diamox used to heal?
« Reply #1 on: September 11, 2012, 06:27:16 PM »
::waving::
HEY THIA!

I am so sorry to see you here! 
I don't have much to add regarding your Diamox trial (to seal leak) but we've (dh and I) discussed it and I'm not sure if it has enough merit to try.... I suppose if removing 'pressure' from a leak location would be beneficial (as in such case like your with head leak) it would be safer to try than a lumbar drain - but in DH's case, with a lower spinal level leak, I don't think Diamox would help!

Keep us posted!
Laura

Patient Advocate for my DH  :-*, and mom to three great kids!   :D

robbysmom5

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Re: Diamox used to heal?
« Reply #2 on: September 12, 2012, 04:23:57 AM »
Hi Thia!! Just wanted to say Hi and wish you well!

sadlisa

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Re: Diamox used to heal?
« Reply #3 on: September 13, 2012, 03:55:26 PM »
Hi Laura and Robbysmom

Thanks for the reply.  Sorry your dh is still having issues Laura (I am happy you are here, but not that your dh is still suffering.)  This csf leak thing is really frustrating.  I hope Robby is doing well. 

I decided to try the Diamox because they can not find the site of the leak.  I don't think it is working.  I believe since I've been leaking for 11 + years it might take longer than 3 months though and will discuss this with my doctors.  I also think there might be too much scar tissue to ever heal on it's own.

Thia     


Pinwheel

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Re: Diamox used to heal?
« Reply #4 on: October 21, 2012, 10:51:43 AM »
Hi Thia,
I've been on Diamox 250mg twice a day for years.  I had a craniotomy and ear reconstruction to fix my leak.  The cranial leak was fixed and now it comes out my nose. The diamox is a maintenance drug for me.  They are keeping me on it to try to fix the leak by keeping my pressure on the lower side.  The only side effects I get are tingling in my hands and feet, but it is intermittent and it goes away.  I hope you are on your way to recovery.  This is not fun to deal with. :-\

sadlisa

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Re: Diamox used to heal?
« Reply #5 on: October 22, 2012, 11:00:52 AM »
Thanks Pinwheel

I have just been taken off the Diamox (5 days ago) after 4 1/2 months.  The last 3 weeks I was to try 250 mg everyday (up from every other day.)  It caused abdominal cramping.  I still have occasional runny nose and other symptoms.  I don't think the leak is sealed but, I will give my body a few weeks to adjust to being off the medication before I decide.

Do they know where your leak is?  Is it in a new place or is it still in your ear?     

I think most of what leaks for me goes down my throat during the day.  It comes out my nose when I work hard.  It also seems to collect somewhere when I sleep at night and is runny in the morning when I walk.

I hope things improve for you soon. Thia       

ouch

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Re: Diamox used to heal?
« Reply #6 on: December 16, 2012, 03:32:20 AM »
Hi Lisa,
I was wondering how you are doing. Did the Diamox help?

sadlisa

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Re: Diamox used to heal?
« Reply #7 on: December 16, 2012, 10:03:20 AM »
I think it may have helped a little.  I am still leaking though.  I think I will discuss this with my doctor next month.  If not for the abdominal cramping I would try again.  Maybe a lower dose for me is needed.  I am now trying to get a referral to a neuro-ophthamologist to check for increased intracranial pressure in the optic disc. It was suggested to me this might be the cause of my leak.

Thia