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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Frustrated!!

greenbayfan1
greenbayfan1
Sorry in advance, but I need to vent to those who understand the agony of PCT. So, recently, I've been having blurred vision, ringing in my ears, migraines and nausea and I had a new lp shunt put in back in February of this year. It seemed to work well for about two months and then I started having the symptoms that I listed above. NS first did a scan, then a shuntogram. Well, for the past 2.5 wks, he has been changing my setting every other day or so, to see if that helps and it has not! He said he could replace the valve in which that would be an outpatient procedure and take a very short time to fix. My shunt has also moved on its own I guess. I love my NS, but I'm getting frustrated because I'm worn out from all the settings and the headaches. He even said surgery might not even help. What? So, I'm suppose to go blind and have migraines? I sometimes wonder if people think we make our symptoms up!! Any advice on what to do or has anyone experienced this and did you have an lp valve replaced? I'm just worn out and I want to feel better.

Thank u!
PressureCooker
PressureCooker
This sounds terrible, greenbay. All sympathies for what you're going thru. A couple of questions: did the shunt ever re-set itself on its own once the doc finally got it to move to the #2 setting? And, what is it set at now? Are you having low or high pressure symptoms? I.e., one way to tell is if you can lie down flat and your head feels better in doing so.

Greenmum noted that it takes at least a week between setting changes for you to level off and be able to tell if one particular setting is better than the other. Anyway you can talk your NS into slowing down the adjustments from every other day to once every 7-10 days? Am so sorry you're miserable!
RN4408
RN4408
Ugh, I'm so sorry you are struggling with this. I don't have any great advice, but maybe seek another opinion if he is unable to help you? When you are coping with not "only" headache but blurred vision as well there just has to be something done. Have you ever identified an underlying cause/trigger for your IH that could be further addressed? I'm sure you've got that covered, just trying to think what else could help. So sorry your shunt hasn't been doing it's job properly and that you've been feeling unwell. How frustrating! Hope things get better soon.
deleted_user
deleted_user
I dont really know what to say Greenbay, i feel for you so much! I dont know any thing about shunts, but i do know what it feels like to feel rubbish! I am so sorry! things should be on the mend and they are not and i know how frustrating that can be.

what was the last reading on your LP? Chances are that even with the blurry eyes and the shunt doing strange things - i dont think you will go blind because they would have said if the shunt was not draining at all, so the pressure is being at least partly relieved. It is mostly only cases where the pressure remains untreated where the patients go blind. but know that doesnt ease your endless head pain.

I know its not good but maybe back to the dairy and like PC says no adjustments for a while. what is your current LP, what are your exact headache symptoms: is it a high pressure, low pressure headache or a migraine? and then you can try and adjust accordingly rather then just jumping around - unfortunately it means a long week or too of headaches.

Thinking of you!