Good Afternoon all,
hoping everyone is fit and well I was very grateful for peoples response to my introduction. I am back again for some more advice.
I visited my ophthalmologist last week and was given the news that my swelling had in fact got worse and I have now lost more of my peripheral vision I have had one lp and have been on Diamox 1500mg for 8 weeks with awful side effects.
I visited my neurologist yesterday and she has decided the Diamox is no longer viable and is taking me off these and putting me on Topamax 25mg gradually decreasing Diamox so on etc etc

My fears are I have Bi-polar and am very nervous about the Topamax and side effects but to top all this off my consultant has said if the Topamax does not work I will need medical intervention in the form of a shut I am so scared at this moment in time as what to expect I don't know much about the shuts and decided last night to do some research then after five mins of reading had freaked myself right out
Any positive advice would be great along with any other views on Topamax and shunts one very frightened little puppy.




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It is very overwhelming when a shunt is mentioned and could become a distinct possibility, so how you feel is entirely normal, and we who have shunts do know how you feel.

The surgery itself is frightening because it's that entering into the unknown, so our minds can imagine all kinds of things. Recovery from a shunt is not as long as you might think and they are very effective at keeping symptoms at bay and CSF under control. I won't lie to you, they can be problematic, but I've had to have a shunt now for 12 years, and personally I'm quite happy with it.

I know there are some scary stories out there, but that's because the ones that are successfully shunted, don't always feel the need to post about it, but go back to their everyday lives as before in alot of cases.

Fortunately we do have members who come back and tell us their success stories, and keep us updated on how they are getting on. We do have a booklet "talking to your Neurosurgeon" which has information in and lots of questions that you can ask them about shunts and surgery etc.

I see that you are from the UK, and if you would like I am quite happy to have a chat to you on the phone and answer any questions, so let me know if this is something you would like to do.

Topamax is now as commonly used to treat IIH as Diamox, and is a drug used to treat neurological problems with the brain. You can read more about it here. [You must be registered and logged in to see this link.] We do have members who are on Topamax and I am sure they will be more than happy to answer any concerns or questions you have.

Heidi xx

Thanks for your reply I think I am worried about the topamax as I had such bad side effects on diamox are they a similar drug? I also think my vision must be quiet bad as I was only diagnosed 10 weeks ago and they are already discussing shunts

Hi! I don't have any experience to share about shunts, since I do not have one myself. But I wanted to let you know that I have recently started on Topamax and am doing okay with it. For me, they are adding it along with my 1000mg of Diamox, so the plan is for me to be on both meds together .. a little different than your situation. I've been very nervous about the side effects, too, but it hasn't been too bad. They actually let me start by cutting the 25mg Topamax in half and working my way up to the 25mg dose. Now I'm on that, with plans to go up to the 50mg pill next. So far so good! I hope it will be helpful for you, and you won't have to consider the shunt. But if you do, we have lots of folks here who have been there and will be glad to help you through it. *hugs*

Pearce, I realize that this is a very scarey time, but please keep in mind the "big picture." You need to save your vision. Generally, damage caused by IIH is reversible, but, the longer you have uncontrolled IIH and the longer you have vision loss, the worse the prognosis. All the more reason to nip this in the bud. Please, do whatever you can to save your sight. Try whatever you need to. Be strong. We'll be there to help hold you up. We'll cheer you on. We're here to listen, to share, to laugh and to cry. What I really love about this particular forum is the diversity of it's members. We share the common bond of IIH, but it affects each of it a bit differently and we treat it a bit differently too.

That being said, yes, there are those who have had issues with taking Topamax, others, not so much. Just be aware of the possible side effects, especially the chance of having cognitive issues, just in case. I don't take that particular medication, but I have fluctuating cognitive issues. I have learned that when my brain just isn't thinking straight, almost like being buzzed, that I cannot make big decisions. It just isn't wise for me to do. I hope this doesn't become an issue for you.

As far as the shunts go, I have had a lp shunt for 16 months with no revisions. It does have a programmable valve, which is an option I highly recommend. Again, some have issues and many surgeries required, others, like me, have had no issues at all.

So, please try to remain calm. Know that you are not alone. And that many of us were shaking in our shoes when we first had to deal with te diagnosis of IIH. It does get easier and less scarey, honest.

Honestly, everyone responds to meds and shunts differently. I personally couldn't tolerate any of the meds, but have been fine with LP shunt the past decade or so. It hasn't been perfect, but I've been able to maintain fulltime employment and have good quality of life most the time.

I think the best advice would be to stop doing the Internet searches. Educate yourself on the disease, treatments, and surgeries through this site or IHRF. Surgery is scary enough without all the horror stories!

Let us know if you have any question or concerns, and we'll do our best to help you through it.
Take care,
Julie

hi i have tried to reply a few times but my lap top is broken. i completely understand ur diversion to toprimate the side effects are well just like torture but the will save your eyes and hopefully help you not have to endure to meany LPs. its catch 22 x x


as for the shunt i am not going to pretend that its plain sailing mine did coil i had it put in in December then it coiled in January, this one is amazing it has changed my life i can see i can hear and i feel so blessed and healthy.

when the shunt coiled it didnt hurt i just got the typical IIH symptoms and a bulge in my tummy x

the surgery is no where near as bad as you think its gonna be i was so shocked i expected agony but NOPE. low pressure head aches but redbull and drinking plenty of water will help with that x x
I AM 2-3 MONTHS POST OP (second op) AND NO REGRETS
DON'T LET FEAR STOP YOU FROM DOING THIS IT WILL CHANGE YOUR LIFE IT DID MINE

I had a VP shunt placed about a year ago.

Right after the surgery, I felt worse than I ever have in my entire life. I will not lie about that. I woke up with a half shaved head and a catheter. I had to re-learn how to sit up, my brain was not used to having such low pressure that I got headaches because the pressure was too low, very similar to a headache after a lumbar puncture. I puked on myself and was wobbly when walking for about a week. It took me about 2 and a half weeks to get back to normal.

All that awful stuff being said, I would do it again. In a heartbeat I would get the shunt again. I was very close to losing my vision completely. I had a lumbar puncture 36 hours before my surgery to prevent any further vision loss. I had lost almost 65% of my visual field and I already had a pretty hefty prescription in my glasses. I got almost all of my vision back and I have had stable vision for the past 8 months.

I got tons of support from my family and the few friends who really knew what was going on. I could not imagine doing it any differently. I grew very close to my family over the weeks I was recovering and I got my vision back. I have had no troubles with my shunt so far (knock on wood), and do not even realize I have it most days.

Lisa, thanks so much for the words of encouragement. Often surgery is unpleasant, and it sounds like you had a really bad time of it. But, that being said, the fact that your vision has been saved makes it so worth it!
Continued good luck.