I had decompression surgery July 20th, about 2 weeks out I felt really good. My symptoms were letting up and I was doing more than I had done in 2 years. I started getting these terrible headaches, they were the absolute worst that I'd ever experienced, it felt like my head was going to explode. Just turning my head even the slightest would make my head pound so much that I couldn't even catch my breath. So, after the weekend, we went back to the doctor, CT didn't show that I had a CSF leak or high ICP. However, she said everything I was explaining sounded exactly like high intracranial pressure and the only way to prove it was a spinal tap which she didn't want to do and I did not want so she is treating the symptoms with diamox. She said to try it, if it worked, we'd know if that was the issue. It worked. Crappy part is the side effects suck. So, anyone here on diamox or been on diamox and gotten used to the side effects?
i was taking diamox and noticed sime unpleasant sideaffects but topamax is the worst.
Yeah I’m on topomax too and do not tolerate it well. Kind of a double whammy. I swear this diamox though, it has like every side effect in the book, a lot of which were some of my symptoms before surgery so I can’t tell if the surgery has helped or not.
On a positive note, Diamox and Topamax took away my daughter’s daily headaches, nausea and fluid buildup from the surgery. Before Diamox she suffered as you described and after a week her headaches are gone…haven’t taken a pain killer in 2 months! Side effects were very manageable and much preferable to the headaches and nausea. Her symptoms were from the fluid build up after surgery. In her case, these meds worked wonders.
I was on Diamox a week and had a severe allergic reaction and ended up on steriods for a week. becareful
I've been on the Diamox for about three weeks, but a week in my dose was doubled, I take 1500 mg a day now and the side effects just aren't letting up. They did mostly go away with the first dosage, but they didn't completely get rid of my headache so I was still stuck at home and miserable whenever I moved. Thankfully I see my doctor on Thursday so I get to ask more questions.
Joalexa, mine was fluid build up from after surgery as well, but I'm sorry your daughter has had to deal with all of this. Did her doctor say she'd be on the diamox long-term, if you don't mind me asking?
Bmtiz92 I don’t mind you asking at all. After her decompression she developed aseptic meningitis (10 days) and a large pseudomeningocele. She had daily nausea and headaches and every 2 weeks her left side would go numb and her speech would slur…scary stuff. Obviously the result of the fluid pressing on her brain as well as residual inflammation from the meningitis. Diamox and Topamax turned her completely around since June 16. After a month the doctor’s tried to drop the Topamax to 25 mg but her headaches began to come back so she’s back up to 50 mg/day…the magic number! We go back in October when we will probably try to wean again. Her follow up MRI is in December to see her syrinx and pseudo…hoping that both are resolved. My guess is she will be weaned off in December. Hope that answers your question and did the Diamox help your fluid buildup? Hers was very large and is now no longer visible.
Wow I'm sorry she had so many complications after her surgery. I hope she's able to wean off ok. I'm hoping my dr weans me off cause I'm really over all of it. Thankfully I was already on the topomax, had been for several months. Yes, the Diamox did help the fluid buildup, just unfortunately came with lots of side effects that refuse to let up at this dose.
She is on 750 mg/day and maybe that’s why her side effects are minimal. I am talking to another Chiari survivor who had her pseudo completely disappear after treatment with Diamox. She is going to start weaning off the Diamox soon. This news was very encouraging as I can’t wait to have her off all the medications!
How long did the doctor say she needed to be on the diamox? My doctor wants to insert a lumbar shunt, FOR EVER! I would like to try something before that has to be done. Chiari surgery 5/2012, lb puncture 6/2012 for csf leak, exploritory surgery 7/2012 for the leak and I'm still leaking. Now he wants to do the LB shunt. I'm affraid and I've heard of this Diamox, not from my NS. Any suggestions? Is it forever on the meds or did they say she could get off of them after so long?
Joalexa said:
On a positive note, Diamox and Topamax took away my daughter's daily headaches, nausea and fluid buildup from the surgery. Before Diamox she suffered as you described and after a week her headaches are gone...haven't taken a pain killer in 2 months! Side effects were very manageable and much preferable to the headaches and nausea. Her symptoms were from the fluid build up after surgery. In her case, these meds worked wonders.
The NL said my daughter will be weaned off Diamox and Topamax after her next MRI in December. We are hoping the MRI shows syrinx reduction and no pseudo. If so she will be off all medications. I agree to do whatever you can to avoid a shunt!
Thank you. I will saw a prayer for your daughter. I just called the NS and left a message for him regarding the diamox. He has said nothing to me about it just wants to do a shunt. I don’t want to do that but the pressure is so bad I can’t live like this for too long. I haven’t laid down flat in almost four weeks. Reclined only. Again, thank you and good luck.
Thank you prayers are always welcome! Good luck to you and we will pray for you as well <3.
We bought her an incline pillow and a body pillow so she would not lie flat. She piles the pillows on but I notice she is now lying flat when I bring in her 7:00 am meds and…no headache! If you need more details regarding dosage and side effects just ask. BTW her NL prescribed the drugs, not the NS.
Are they trying to diagnose you with pseudotumor cerebri/ idiopathic intracranial hypertension? Mine is thankfully not going the shunt route yet but wants me on the Diamox for 3 months before I come off. Even just cutting back one of the 250 pills I can start to feel the headache coming back so that will not be fun (I'm on 500mg three times a day). I would definitely try to get some more answers before jumping into getting a shunt, you could be looking at a lifetime of shunt difficulties and revisions. I've seen lasix and topamax mentioned for intracranial pressure too. I hope you get some answers.
RaChele said:
Thank you. I will saw a prayer for your daughter. I just called the NS and left a message for him regarding the diamox. He has said nothing to me about it just wants to do a shunt. I don't want to do that but the pressure is so bad I can't live like this for too long. I haven't laid down flat in almost four weeks. Reclined only. Again, thank you and good luck.
If there is fluid or a leak on MRI then there is a cause for the ICP at least in my case. The idiopathic part no longer applies if a cause is found. Dr. Trumble’s explanation of equalizing pressure makes sense. Whether medication or mechanical means are used (a shunt) reducing the pressure causes the leak to heal and the fluid to be absorbed. I’m just so sorry we have to deal with these post op complications!
Also she is on 50 mg Topamax daily as well as the Diamox which do far is doing its job 
After the failed attempt to repair the CSF leak my NS says the leak is probably coming from many of the stitches, not one in particular. He says that my body has not accepted the patch yet and there is no repair that can be done. He says the only thing left to be done is a lumbar shunt. I do not want this. I have a hard time believing that this is the only option and I'm looking for answers quick as my head continues to get fuller. My MRI showed a large fluid collection with suboccipital postoperative pseudomeningocele. The pressure is building and on 8/22/12 my NS told me to call him by 8/31/12 with my decision on going forward with the shunt. I have to be honest, I'm affraid! Just looking at any other options right now. I thank you so much for the information you gave me and pray that it's an option for me as well. Thank you
My NS office just called and stated that the "only" option is a shunt. Why? I think it's odd how some doctors assume operating is the only options when there are less invasive options that should be tried first. Not sure what to do now. Not sure who to call or where to being for another opinion???
This is tough as the NS is the expert and knows your case. A second opinion maybe? A referral to a neurologist? A good NS won’t have a problem with you getting both. Call back and ask for their recommendations. I would exhaust all options before getting a shunt. Best of luck and keep us posted.