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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/ Pseudotumor Cerebri Support Group

Weight or truma not a cause ...

mommies4
mommies4
Hi everyone ! Hope all is well ...

I've not posted in a while but was curious as to how many of us here Dx'ed with IH wit no know cause ..

My Doc says I fall into that one cat. that is unknown Ive never been over weight so that did not cause my IH I've never had any kind of head truma.

I had the LP Shunt 5 mths after being DX'ed due to the meds failing and 12 days of vomiting with no other options yep it went in. 2 yrs later I'm on a study down fall loosing eye sight still also dealing with the same pain,migraines eye pain feeling not much better then before the shunt went in. I'm holding off having the shunt adjusted again.It's been adjusted 6 times it's working i feel and from 20 to 180 im already at 80 so I feel I'm running out of time ... I wish I knew more as to how this came about in the 1st place...

Is any of you in this position,with no real know cause ??
I'm now having a new problem with the left side behind my ( GOOD EYE) as I say It's feeling funny pain shooting from behind it and it's starting to worry me ... not sure what's going on

ANYONE ANYINFO ANYTHING , KNOWLEDGE ?? HELP

Thanks for listening ANGIE
deleted_user
deleted_user
sorry ur going through so much, sorry I don't have any info that can help you, just prayers. I have IIH too, no known cause, I didn't fit the usual criteria either so it makes it more puzzling...truth is, I don't think many of us has a reason why for certain. There's a lot of unknowns. Again, my prayers. Take care
deleted_user
deleted_user
Angie - I also have no known cause. I was tested for IH in 2009 because I had so many syptoms but the tests came back negative. In Feb 2012 the tests came back positive. Both times some of the doctors (different doctors each time) were confused as to why I even had these syptoms because my history, weight, etc, just did't fit the "typical" scenario they expected. The neuro and opthomalogist I wound up sticking with both told me they they have all body types with IH, so it seems to me the weight stereotype is just that - a stereotype.

As far as the shooting pains in your eyes - I get that all the time - all day every day - alternates eyes. It's hot and sharp, stapping. Not as bad at first and strengthens in intensity through the day. Subconscious is very powerful, so sometimes I can talk myself out of the pain ("I'm OK, I can handle this, It will go away soon. It's no big deal. I'm fine, etc" , or I tell the pain "I don't have time for you right now. Go away" and it will (early in the day, mild pain) I take a lot of deep breathes so I stay calm, as the more tense and stressed I get, the worse the pain will be. Later in the day, excedrin will help me.
deleted_user
deleted_user
A new article: "Traditionally, imaging ruled out secondary causes of elevated CSF pressure but now may reveal findings frequently seen in patients with PTC, including the following: flattening of the globe, an empty sella, an enlarged ONS, protrusion and enhancement of the optic nerve head, and increased tortuosity of the optic nerve. Novel imaging methods, including MR venography, have additionally identified sinovenous stenosis as a potential indicator of PTC."

http://www.ajnr.org/content/32/11/1986.full

Perhaps the new technology is allowing for an approach to figure this all out!

Angela
mommies4
mommies4
Hi Guys !
Angela all the above was ruled out ,I do have the empty sella,no sinovenous stenosis,I thought that would have been the problem too but that was ruled out through testing ..My optic nerves seem to be on the lower end of swelling right now and things seem to be ok ,just the vision and pain is still ongoing.I had a different vision of how things would be after surgery,thinking perhaps it would be on my side but have not been so lucky,my field test are getting worse every time I have them. I'm having new pain now after all this time,and this pain is alot like when this all started in the right eye my problem side.

chanelir ~ TY so much for your kind words !

ValerieR ~ Thanks I too will try the ole talking that pain right outta my head ,telling it I don't have time for you today it sometimes works and then sometimes hits me with alittle more,I just take it day by day What else can we do ....

xxxx BE WELL ! ANGIE
JT1973
JT1973
No known cause for me either. I'm not overweight, wasn't on birth control pills, no head trauma. MRI/MRV appear normal. Only thing I can think of is that I was on Levaquin for bronchitis, but that was a full year before I started having symptoms, so the doctor doesn't think it's likely.
I guess we're just lucky, huh?