Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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nursebeth
nursebeth

Has anybody else been diagnosed with IIH with no papilledema? My background story: 


I have had frequent headaches for years, but always brushed them off as being caused by caffeine withdrawal or stress. Around May 2016 I started to experience the whooshing in my ears occasionally as well as the random dizzy spell. Fast forward to October and these symptoms along with the headache increased in frequency and I saw my PCP. She sent me to ENT who said everything checks out great, he referred me for MRI. Radiologist reports "signs of increased intracranial pressure". I get referral to neurosurgery (faster to see in my town than neurologist), they say they don't agree with radiologists findings and refer me for eye exam at opthamology. Opthamologist says everythings normal, no signs papilledema or peripheral vision loss. Finally see the neurologist in June who says MRI could potentially show signs of IIH, but since I don't have papilledema he isn't concerned. By that point in time my headaches were everyday, severe dizziness and vertigo mutiple days a week, and whooshing in head everyday, along with fatigue. He gave me option of starting Topamax to treat headaches or get LP to rule out IIH. I chose the LP. My pressure came back at 22 cmH2O. Neuro said that this is definitely higher than normal but not techinically at the 25 he needs to diagnose me with IIH himself. So he just started me on Diamox and referred me to neuro opthamology. I am on my second week of Diamox and experiencing all the side effects(parasthesias, peeling skin, loss of appetite, fatigue, brain fog, etc.). Neuro opth. scheduled for October. I am absolutely miserable! There is no way that this is not IIH, and if it is not, then what else can be causing all of these symptoms and this much agony?!? It is affecting every part of my life. I spend everyday just waiting until I can go back to sleep because I feel so exhausted and am just always in pain. 


Has anybody else experienced anything similar, where there are no signs of papilledema or effects on the eyes but you have every other symptom?

Huddo1989
Huddo1989
Morning Beth, Yeah I am a new victim to IIH myself, diagnosed Wednesday 2nd August (totally hating Diamox). I'd have to suggest you see another Dr. I found all mine out by seeing an Optometrist, he did some tests etc. thought brain tumor and quickly refereed me to an Ophthalmologist - this lovely Dr also thought Brian Tumor, as my optic nerves were 4x the normal size (I'd been seeing spotty vision and dizziness for 3-4 weeks).

My lovely Ophth sent me straight to Emergency where the hospital took over, did x2 CT scans and an MRI to rule out Brain tumor - I didn't want a LP, my Neuro said it is semi dangerous and isn't really required, he could tell by the text book Ophth result finding's that it was IIH (mind you I am 70kg 169cm - I'm not obese but I'm not small, so I am outside what he thought would usually be effected). I plan to see another Neuro now, just to see their thoughts on med level and cure date/timeline etc as we wanted to start a family and that could now be stopped for 6+ months until this clears - that is in saying it doesn't just come back.

My Optometrist said papilledema when looking for a specialist etc - but no signs, could mean your effected differently. Its an under studied condition, they don't know the cause exactly so surely they don't know ALL the early side effects.
casibug
casibug
I was diagnosed with IIH back in March of 2015. I have never had the papilledema symptoms. I've had some blurry vision and dizziness. I've had headaches for years as well. I fell in January 2015 and suffered from post concussive syndrome for two months. After I continued to have daily headaches, dizziness, blurred vision, ringing in my ears, nausea and fatigue I finally was referred to a Neuro-Ophthamologist in Atlanta that diagnosis me with IIH. I had previously had an MRI and CT Scan that came back normal. She ordered a LP and my pressure was 33. At the same time I found out I was pregnant. I had to have 4 LPs throughout my pregnancy without X-ray in order to get relief from the headaches. LPs so far have been the only thing that have given me any kind of relief. I couldn't tolerate the side effects of Diamox. I have recently moved and I am struggling to find doctor that have experience with IIH. I've had Ophthamologist think that I don't have IIH simply because I don't have the papilledema. It has been quick frustrating and discouraging. Nothing else fits how I feel. Its been 8 months since my last LP and my symptoms are really making everyday life a challenge.

I hope it helps just to know there is someone else experiencing what you are.