I Have been on diamox since oct of 2011 and topimax since November of 2011. I had major optic nerve swelling at my diagnoses of IIH but now it is almost gone.I still have a small blind spot from that episode and I still see small and large blue dots, flashes,red dots,black dots, a small blind spot that will come in field of vision and then disappear, shadows in side vision. All of this is what I was doing before I was diagnosed with IIH and I am still doing it and the doctors tell me they are not sure what to make of it. It could be optical migraine or the psuedo tumor symptoms still active. I actually am having alot of the symptoms I had before coming back. Anyways, I was wondering if anyone else has this problem. THis is an everyday all day occurance and that is why it bothers me so much.

Thanks for any advice or reply!

I personally haven't experienced those kinds of visual disturbances, only the blobs and whispy type floaters as well as interim periods of total vision loss, which I don't have now due to the bilateral subtemporal decompressions and VP shunt that I have.

I didn't know much about Optical Migraines so I went up and read up on them, and your symptoms do seem to match those. I've found this site which I thought you might like to have a look at, and may find helpful. Ocular Migraines

Heidi

Thanks Heidi, I read that article about two years ago when I first started having optical migraines. I guess the difference is I have them on a daily basis. That is why I was wondering if maybe the iih is causing the optical migraine to occur? My neuro seems to think it is both from the iih and migraine. So, looking for anyone else out there that might have similar thing happening. It is just annoying to watch tv or try to read something, driving, working, and all you see all day long is spots, dots, flashes and so on. I am on Topimax and it makes me a very dull person..haha.. a little dumb too. I tried to quit taking it and within that week had a massive migraine. Well, this is turning into a whining post so I will stop! LOL!

Thanks again for your reply!

Amberly, you can feel free to tell us how you feel. Because all of us know all too well how frustrating these non ending symptoms can get, we "feel your pain!!" Vent away, gal. It's fine!

My vision symptoms are different that yours, but it will be interesting to see if anyone else does have some like what you are dealing with.

Has your doc suggested adjusting any of your meds? Might be your body getting used to the current dose.

Well, for allowing me to vent a little. I have needed to for awhile. I talk to my husband and my mom but I feel like they think I am just complaining so I try not to talk to much about it anymore. I am 32 yrs. old and my mom still likes to talk to me like I am a child. She is the one that says well maybe it is just this or that and not the iih. For the past month now I have been feeling like it is trying to make a come back. I mentioned it to my neuro doc last month at my check up and he said he didn't want to do an lp unless absolutly necessary. Since then the symptoms have picked up even more and I had a recheck at my eye doc and got good news there. The papiledema is gone. Although my neuro doc says that does not mean that the fluid is not building back up in my head. So, now I have to go see my neuro again tomorrow to discuss what to do next. I already started taking an extra dose of the diamox. I feel so tired ALLL the time!!! I can work five hours and come home feeling like I have worked 15 hours. I have stopped losing weight because I am to exhausted to fix a good meal or exercise. I have two young kids and a house to run and I want to go back and finish school next semester and I am not sure my brain or my body can handle it :Angry:

I am not sure if some of the things I have been doing lately are signs it is getting stirred up again or if it is all in my head. I have thought back to some of the stuff that was happening before I was diagnosed with IIh and it seems to be that it is the iih coming back. I DON"T KNOW !!! I guess I will leave to the doc to figure out.

That is all I have to say right now! I love that we have this site to come to where there are people who understand my fears and frustration. I know it could be worse but it is just the fact that I am still learning how to deal with this thing.
Thank you for your time

Amberly, I'm glad you have discovered us here. You are 100% spot on. Having others to talk to that have also been down this road, that can answer our questions (that sometimes the docs can't or won't) that truely understand how we feel. Well, it's a godsend. I would be lost without this forum, too.

Do ask your doc for a specific plan of action. Really impress upon him that it feels like your symptoms are coming back, so at what point will action be taken? I don't understand the reluctance to do another lp to find out if indeed your pressure is coming up again. You DO NOT need to wait for your eye sight to start to fail for "proof". I never did develop pap. That is not a mandatory symptom of IH.

The fatigue may be largely due to the Diamox. That rascally little pill packs a wallop! It has taken me months and months to get used to it, but my body finally can ignore the tingles and the fatigue. For a while I even switched to the Extended Release (Sequels) capsule version of Acetazolamide (Diamox) because the side effects are not as pronounced as they are with the tablets.

Good luck with the appointment on Friday. Let us know how it goes. And don't be afraid to tell your doc how you feel. He needs to hear that it is really affecting your life again.

Hi Amberly

I experience the small and large blue dots, flashes,red dots,black dots, a small blind spot that will come in field of vision and then disappear, shadows in side vision. I was first diagnosed in May 2010 and was given the all clear in November 2010. I thought that was the end of it.
However in Oct 2011 the iih symptoms came back and was re diagnosed with it. I was given a LP at the time and put back on the diamox. In Dec and Jan I was feeling ok but since Feb things have been real bad I was back at my neuro doc on the 16th March and he said the fluid is building back up as he could see it in the back of my eyes and that his is normal and I will need to get another lumbar puncture. I was only taking 2 diamox a day then but I'm up to 4 now which is hard to deal with as I'm so tired all the time. I am getting the LP on the 19th May.
I do feel the last week or so that the blurryness in getting worse. It is a bank holiday here in Ireland so I am going to ring my neuro doc on Tuesday as I think I need to get my LP sooner.

Hello Amberly!

Glad you found us here! Venting is quite welcome. We all need a safe, understanding, and compassionate shoulder and sometimes, that it only found with those who understand from the same point of view.

I have lost nearly all my peripheral vision, and now, get blighted out spots in my central sight, or it's blurry. I do not have Pap.... and I quite agree with Wylee. Pap isn't a pre=requisite for IIH. Some people get it, some people don't, it never does determine what's going on in there exactly. I've had ER docs try to debunk my diagnosis because they didn't see any evidence of Pap.

With my sight issues, I never tend to have a headache that just occurs as the issue does... it just -happens-. I do despise the unexplained.

I hope that you get some answers, and some needed mental respite here!

<3 C

Morrise, that is exactly what I do! I went to see the neuro today and he still will not do another lp because I do not have any swelling behind my eyes like I did the first time. I am still having those visual distubances though. He said he may send me to a neuro opthamologist and let them go deeper into that issue. He ran some blood work to rule out other issues from the meds as far as my other symptoms go. I really think that the pressure is building back up but he does not. They want me to lose weight so I guess I will go back to focusing on that and maybe this will die back down and if not I will just end up back down there doing an lp wether he wants to or not. I am thinking of keeping a log of every symptom and visual disturbance that happens through the day and when it happens so I can show him on paper instead of trying to explain it.

Thanks hunterofangels! it is very discouraging when people don't listen to you. I know from reading many of your stories you all know how I feel.

Hi I do have to say my headaches have eased alot over the last few days and I only have spots of blurred vision in my right eye throughout the day. I rang my neuro doc yesterday and explained everything I was feeling the last few weeks but as things have eased I've to wait till the 19th of May for my LP. He did say it might have been down to the sudden drop in weather temps here that might have cause this as we went from 22 degrees to 8 degrees overnight about 2 and half weeks ago. I had read that here in the website over the weekend so it all makes sense. I think at this stage I've read everything on IIH. Its a very frustrating illness with so many unanswered questions but I'm leaning to live with it.

I will say that staying positive is the best thing especially on the bad days and remind yourself that it will get better and the good days will come again. I know that may not always be the case with some of you. I waited 18 days the last time for the good day to come but it always does so thats what keeps me going

Thank you again for this website and all your help with helping me deal with this condition xxxx