Hi Everyone  I haven't posted since last spring, shortly after I was diagnosed. It has been a long 6 months...

I started on Diamox 500mg twice daily. I have never had severe headaches but instead was diagnosed due to papilledema and optic nerve damage. In March, at the time of my diagnosis, my opening CSF was 430. After several months on Diamox, and the resulting side effects (severe fatigue, depression, rashes over my legs, nausea, vomiting, diarrhea, numbness and tingling...you name it, I had it) it was found that my optic nerves had gotten worse and I was losing more of my vision. So I had a 2nd LP. The second one was a little better at 390, but still obviously high lol. So my medication was increased to 1500mg per day.

At my last neuro - opthamology appt my optic nerves were finally showing improvement, so I was extremely happy. However, last week I ended up in the ER with extreme back pain, vomiting, and diarrhea. I had the suspicion that I had gotten kidney stones in the past few months (related to the Diamox) but this pain was absolutely horrible. Turns out that I was suffering from a severe kidney infection and a blocked ureter due to the kidney stones. I had to be admitted to the hospital for IV antibiotics. After this, my neuro said that I can no longer take Diamox.

So, on Friday I started Lasix. I am concerned now because I have had a minor headache since Saturday (my IIH headaches are not severe, even at my highest pressures. They are more constant with a pain level around a 4-5). So right off the bat I don't think this medicine is working. Second is the constant thirst. I don't know if it is normal but I am drinking 4+ Liters of water per day and I cannot get rid of the dry mouth and constant thirst. I am also using the restroom every 20 minutes or so..probably because of the amt I am drinking.

So, I was hoping you guys could tell me your experiences. Lasix or Diamox?

I'm sorry things have been so difficult! Yes, Lasix can cause dry mouth and frequent urination..it's a diuretic, so flushes fluid from your system. I'm sure you will notice some changes with your symptoms while your body adapts to new meds. Lasix is like anything else..everyone reacts differently. Hopefully these side effects will subside as your body adjusts and your symptoms will improve as they increase to therapeutic levels. It sounds like you had some pretty severe reactions to the Diamox, so hopefully Lasix will be a better option. I would recommend keeping a symptom log to track any changes. You can find examples in Useful Guides and Print Outs section.


Good luck, and keep us posted!

Thank you!

Hi,
I had an allergic reaction to Diamox, so was put on lasix.  When I first changed, I had a horrible couple of days of pain, and felt sick and dizzy.  I have adjusted to lasix, I try to drink some high electrolyte drinks everyday.  I have been told drinking tap water can actually make you thirstier because it dilutes what electrolytesyou have.  I try to fit in a high in ptassium V-8 or a zipp-fizz everyday.  It seems to keep my thirst at bay.  I am on 20 mg 2x a day.  I have been having increased headaches and neck pain, so I am not so sure it is working all that well.  Also, my kidney function is down, which I think may be related to the drug. I have been on lasix for 2 years now, and go in a few weeks to see a new neurologist.  I am always hopeful that there is a 3rd possible drug, but I am afraid this is it!  Best of luck, I know how draining this can be!

Just curious if Topamax was mentioned as a possible alternative to Diamox?  I'm on both Diamox and a small dose of Topamax right now, and I know some people with IH use Topamax only.  Just thought I would mention it as something you might discuss with your doctor, in case the Lasix doesn't work out well for you.  Sounds like your body may just need a little time to make the adjustment though.  Hope you feel lots better soon!  

I just looked up topomax and it s also a sulfa related drug, and therefore I would probably have an adverse reaction to it as well.  I will bring it up with my neurologist in a couple of weeks however, because I would love to find a way to feel better!  Thank you for replying!

You might check the IIH and Medication section here. I also suggest IHRF at www.ihrfoundation.org.. they probably have the most accurate and up to date info on IIH and treatment. If you can't find info on their website, try calling or sending them an email. I know some members have had good experiences there.

Hi everyone...well update. For me the Lasix is not working. I had a Neuro OP appointment a couple days ago and there is further deterioration of my optic nerve. I have lost weight, been on Diamox, tried Lasix, and still my optic nerves are getting worse.

Now they are talking about optic nerve sheath fenestration. I am concerned about letting anyone near my eye with a scalpel lol...my neurologist wants me to consider a vp shunt also, but because I do not get bad headaches I would like to avoid shunts all together.

Has anyone ever had the optic nerve sheath fenestration? I have a bunch of questions for anyone who has had this procedure.

There is some information regarding optic nerve sheath fenestration in IIH Surgery Information section. It can help issues with vision, but doesn't address any other symptoms. Again, IHRF may have more in depth information regarding this topic.