Is this a new symptom for Idiopathic intercranial hypertension?? I'm kind of scared

I was diagnosed with idiopathic intercranial hypertension some time ago and have had 3 lumbar punctures which helped the headaches for about 2 months, the last one actually helped for about 5 months.  Now the headaches are back with a vengeance and I have had a lot of problems with balance and gait.  I loose my balance a lot, not falling but it is bothersome.  A few weeks ago I was not dizzy but I kept walking to the right, like a car that is unbalanced and almost fell on my sister.  I was to the eye doctor 2 weeks ago and he said I have a lot of pressure, I asked if it was related to the intercranial hypertension and he said most likely.  None of the lumbar punctures were painful for me, I couldn't really even feel the needle going in but the person doing the lumbar puncture said he wouldn't do any more for me and the neurologist said he would likely try something else.  I am truly afraid of having a hole drilled into my head and being a college student I don't want to lose any time in classes.  The pain though is unbearable and pain meds do not help, I've tried to stay away from them because of the possibility of rebound headaches and am at my wits end.  Could you please advise me what options I have?  Is this leaning and walking to one side at an angle normal???

Thank you for your help

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

Benign intracranial hypertension, also called pseudotumor cerebral, or idiopathic intracranial hypertension, is a disorder characterized clinically by headaches and vision loss, and sometimes tinnitus. Dizziness may also be a symptom, as can some gait instability/imbalance that you describe.

The finding of papilledema implies increased pressure of the fluid around the brain (called cerebrospinal fluid), causing the optic nerve (the nerve to the eye) to be swollen. Prolonged pressure on the nerve can lead to vision loss, so if papilledema is present for prolonged periods (days to weeks), vision and visual fields should be closely monitored. If your eye doctor feels that there is a lot of pressure on your optic nerve as you mention above, then treatment should be initiated rapidly to prevent permanent optic nerve damage.

An MRV, which is like an MRI but for the veins of the head, is sometimes indicated in patients with IIH to ensure the cause is not narrowing of the veins in the head.

As you mention, lumbar puncture can effectively reduce pressure around the brain and relieve symptoms, but this is only temporary because our body makes around half a liter of CSF a day, replacing the amount that has been removed. The treatment is usually with medications to decrease the amount of fluid around the brain, and these are mainly diuretics such as acetazolamide, though other medications are also used, such as topamax. Patients who do not respond to medications or who have vision loss require procedures to relieve the cerebrospinal fluid pressure, the VP shunt you mention above. Though there are complications associated with this procedure, sometimes the procedure is necessary, and when it is, having the procedure at a center where the neurosurgeon has a lot of experience with these shunts is important. Sometimes, a procedure to relieve the pressure around the nerves to the eye (to prevent vision loss) is necessary and can be done as well (called optic nerve fenestration). If a problem with the veins in the brain (cerebral venous stenosis is found), treatment for this may be indicated as well.

It is very important to follow-up with your eye doctor to ensure your visual fields are not being impaired due to the papilledema, because chronic pressure on the optic nerves can lead to permanent vision loss.

However, I strongly recommend continued follow-up with your neurologist and eye doctor.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Cath278]

Hi and welcome to MedHelp. I think the gait problem is normal with IIH.I have IIH and always "fall" to the right.Not fall down as you said but stumble.I have  had this symptom since the illnesss started. As for those headaches... I wish I could tell you something more possitive about them but I cant. I have IIH for 12 mths now.I also have papillodema ( swelling of the optic nerve) and I am taking Diomox 500mgs daily and painkillers. I tried like you , to stay away from the drugs but my quality of life was nil. I had a VP shunt fitted last Dec, and altho it is working, it is not working enought to cope with the high pressure I have.In the 40s all the time. Lp only give me relief for a few hrs. I am now getting ready for my second VP shunt.
My dr has told me to take the pain meds as a way to have some kind of a normal life, with the idea ( hopefully) that with the second shunt , I wont need them any more. I  am aware of the problems afterwards, of giving them up but for now I will keep taking them.
Sorry to hear you are going thru so much.If i can help in any way, drop me a line.Cath278.

[tomandi]

Thank you so much for your response.  It was good to hear this is all "normal" for IIH, I should have thought of it before but just didn't connect the dots so to speak.  I hate that other people have to go through this ****, but it is nice to know it isn't all in my head, nor am I just pain pill seeking.  The pain pills don't help much and they keep me awake too for some reason.

I see my neurologist tomorrow.  I wish people were having better luck with the surgeries.  Getting a hole drilled in my head doesn't sound like anything I want to do, but like you mentioned getting some relief, and sometimes I think ANY relief is better than living like this.

I wish you the best in beating this disease (or whatever they call it).
Thank you again for your response.

Janette

[tomandi]

Thank you for your response.  I appreciate the information.

[CheeserNurse]

Can IIH cause sensations such ad feeling your pulse all over your body, high blood pressure, but nit necessarily headaches?? I have head pressure but not severe headaches. I also have a lot of vertigo, lightheadedness, and balance problems. If someone can help me work thru this, could you please send me a private messge. I just had a VNG that my ENT ordered for me today and hoping to see what comes from that. I'm just totally clueless about what's causingme all of these problems!