Hi All, my name is Marissa and I was diagnosed with IIH back in 2010. I started having really bad headaches after my dad passed away and related it to stress.

I went for a routine eye exam and the doctor saw that my optic nerves were swollen and told me to go to the ER immediately. She said they were supposed to be flat and that was an indication of increased pressure in the brain, possibly a tumor. So, I went straight to the ER, the dr there told me he saw nothing of that nature and sent me home and said I should follow up with a neurologist anyways because of my headaches. I thought that optometrist was a nut after having that ER dr tell me my optic nerves were perfect. So, I make an appointment with a neurologist, he sends me for an MRI and MRV of the brain, well come to find out I had blockages in the main veins that carry blood away from the brain, so I was referred to a neurosurgeon for an LP. The LP starting pressure was at 43. Then we did an angiogram of the main veins in the brain and confirmed there were blockages on both sides, 2 weeks later I was in surgery having angioplasty to open the vein on the right side. The surgeon said he didnt know if I had pseudotumor because of the blockage and that it couldve just been the blockage causing the increased spinal pressure and we would do another LP to see where the pressure was at. So I had an LP about 6 months later and pressure was at a 21; he said that is the high end of normal and the position I was in couldve caused an increase in pressure. So, I was referred to a neuro opthalmologist for visual fields; he has examined my optic nerves and they are still swollen. Apparently my right eyes vision has changed and dr said thats where is starts and wrote me a rx for Diamox 500mg twice a day. That was last week, to be honest I am terrified of the medication and have done hours of research on it and heard the side effects can be pretty bad. Is there anyone who can tell me what theyve experienced, if anything at all? I am so glad I found a upport forum because for a while there I felt like I was the only person in the world with this condition!

Hi Marissa, sorry to hear that about all you have gone through - its so hard. I myself was diagnosed by by optemetrist (normal 2 year eye check) and immediately was sent to see an opthamologist who referred me to a neurologist asap - i had an MRI (clear results) and and LP which also required me to have a blood patch - im currently on 500mg of Diamox per day and have tolerated them ok, i suffer the pins and needles and tiredness but all in all from the spinal tap headache and as a consequence back pain, (4 weeks later, no relief) the diamox symptoms dont seem so bad.

be strong, use this site for support and good luck

Maree

p.s im from australia (sydney)

Hi Marissa. I've been on Diamox 500mg x 3 daily for a couple of years now. At first I was on the timed release, but had to change to the regular 3 months ago. Pins and needle sensation seems less with what I'm on now, but it's still there. I also have some taste alteration, most carbonated beverages taste "off". This forum is a great support, I'm glad you found it.

Thank you for your response! It really means alot to have support from others who have this condition. Anyone here suffered any vision loss? I think my sight is kinda getting blurry, Im not sure if its me thinking that or if it really is getting blurry. I am going to start the Diamox and see if I get any relief from it. Thanks for your input

Marissa, I have lost some peripheral vision and often my vision is shakey/jittery or blurry. Unfortunately I never know when it will strike. The opthomalogist says it's because of shifting pressures on the optic nerve as well as the back of the eye itself. I hope the Diamox gives you some relief.
Betsy

Hi Marissa, welcome to the group!

You've said you've done a lot of research so I'm sure you're already aware that stress can play a huge role in IIH, so I'm not surprised your condition exasperated w/ your Dad's passing..what a horrible time to have to deal w/ physical pain and uncertainty! I'm sorry for your loss and your struggle.

It looks like you've also found some information and support regarding Diamox. I think it's important to remember that there are a lot of medications out there and everyone responds differently. You can actually find information regarding medications and treatments at ihrfoundation.org and their support site ihbrainpain.org. They have a lot of good research and information regarding IIH.

As far as any visual changes, I would notify your neuro-ophthalmologist right away. You can experience different visual symptoms w/ pain and headaches, but if it's new for you it's best to let them look at it. It could be a side effect or a symptom, but your optic nerves and pressure may be changing too. I lost about half of my vision in my left eye and had all kinds of holes in my vision, but it's almost all reversed w/ treatment..it's better to be safe than sorry!

Take care, and definitely keep us posted!
Julie

Hi Marissa and a warm to the group. My IIH was discovered my my Ophthalmologist back in 1989, and after lots of Lp's put on diamox. I did after 6 years have the floaters and cobwebby effects in my vision, and they mentioned fenestration and then decided against it, telling me instead to get used to then, which I had no other choice but to do so.

It was after 12 years, that I started with vision problems again. At that point I had no peripheral vision, depth perception problems and blurryness, so I had my first shunt to halt vision loss. Unfortunately I permanently lost my peripheral vision in both eyes and also depth perception. I have been registered partially sighted for 10 years now amd have managed to adapt quite well. Vision isn't always permanantly lost and often returns with to normal after a shunt, I was just unlucky because of how my optic nerves were damaged.

Keep a record of your symptoms ready for when you see your Neurologist, so you can show him how they are increasing or even decreasing, how your vision is changing and so on. The more you can show him in terms of changes in days and weeks the better.
We have a symptom log you can print off and use.

Everyone responds differently to medication, and so it might be trial and error for your Neuro to find the IIH med that better suits you.Always tell your Neuro if you are suffering from side effects or if your symtoms are not improving or getting worse.

We're always here so keep us updated

Marissa I hope you find this group useful

Thank you for all the support. I started the Diamox, I have had some tingling intermittently and I am exhausted. I know the tingling is to be expected, but what about being thirsty all the time and feeling like a zombie because Im so tired? Anyone else experienced that? If so, when does it go away? I feel like I cant even function half the time..

Those are common side effects with Diamox they sometimes settle down and become less frequent, but if they continue and you find them hard to tolerate talk to your Neurtologist about it, and he may change it to one of the other IIH medications.

Hi All,

Well Ive been on the Diamox for a while now and the fatigue has almost subsided. I have lost 14lbs since I started the Diamox, is Diamox supposed to make you lose weight? I mean Im not complaining or anything, just curious because I was recently diagnosed with hypothyroid too so Im not sure if its the thyroid being at normal levels or just me losing water weight or something from the Diamox. I have to be honest though, Im not used to taking medication twice a day and there have been a few times where Ive forgotten to take my morning dose and my neuro opthalmologist was pretty adamant about me not missing any doses at all.. Whoops. I feel like the Diamox is making me have some memory loss and I find myself really having to think sometimes about what Im trying to say and Ive never been that way. I almost feel like the Diamox is making me stupid. Are these normal side effects? I dont have an appointment with my neuro opthalmologist until September for my next visual field and figured I would bring it up then, unless its not something normal.

The symptoms you describe are the same that I had with the Diamox. I have tried different doses and the two different version of Diamox (the tablets and the extended release capsules) and I just never did get past those symptoms. Because I have those symptoms anyway, the Diamox just made them worse. I've cut back to the least amount I can take to avoid a headache.
It is really important to keep the level of Diamox constant, that is why your Doctor said to take them on time. I have other pills that I take so it is easier for me to take them all at the same time., You may want to keep a small calender handy and just wrote down a check mark everytime you take a pill. That way you can tell when you took the last one. The other thing is to take them at the same time everyday, I take mine at 10 a.nm. and 10 p.m.. That works too.