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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SamSam19 04/03/2017

Hello there.

My name is Sam and I'm almost 25 years old. I was diagnosed with IIH almost 3 months ago after seeing numerous doctors trying to figure out why I'm having blurred vision and headaches. I've had the vision problems for as long as I remember but just thought i needed glasses and being the procrastinator that I am, I never got them.

But 2 days before this past Christmas I was involved in a fender bender which was unfortunately my fault... I slid on ice and hit the guy in front me. Living in New England I'm surprised it doesn't happen more for me. About 2 weeks after the accident I was having these headaches that only happened on the left side of my forehead which I blamed solely on the fact I had hit my head on the visor above the steering wheel during the crash. So I saw my doctor thinking maybe it was a fracture or post concussion syndrome... I work at a hospital so I thought I knew what I was talking about. But after a Head CT Scan there was nothing evident.

My PCP then ran labs and come to find out my SED rate was through the roof so she sent me to a Rheumogolist, Ophthamologist, and a Neurologist thinking maybe it was Lyme Disease. The Rheumotologist had no answers for me but the other two specialists did.

So here I am diagnosed with IIH/PTC. I was gradually put on Diamox at 1000mg a day and the side effects were too much for me to handle. The intense constant tingling in my feet and fingers and the Charlie horses that paralyzed me lead to tears which lead to frustration and conversation with my neurologist. I was told to stop the medication cold turkey.

I am now 2 weeks off medication and frustrated more than ever. I still have the tingling and now increased eye twitching and blurred vision. I work in the Radiology Department at a hospital so I know enough about Lumbar Punctures to worry about them. My Neurologist mentioned the procedure once and hasn't returned to the conversation.

So I ask all of you, should I stop freaking out and allow the medical professionals to guide me or look for a second opinion?? Like my subject says... I'm freaking out.

Thank you for reading and allowing me to rant.

rcykb1 04/04/2017

Have you bad an LP as part of your diagnostic workup? What did your drs use as a basis of your diagnosis? An LP can be therapeutic if they drain the excess fluid. I had numerous LPs this past autumn, winter because my PTC was not under control. Did your doctor put you on any other medication in place of the diamox? I was not able to tolerate the Diamox and switched to Topomax which works for me.

SamSam19 04/04/2017

I have not had a LP yet but from what I have read, it may help take some of the pressure away? They diagnosed me by my issues with blurred vision, high SED rate levels, and being overweight. My doctor did not put me on a different medication. He said to stop the Diamox for 2 weeks to see if the side effects were medication related... I'm convinced I need a second opinion.

rcykb1 04/05/2017

The LP is used to diagnose PTC when the opening pressure is above 20 indicating elevated intracranial pressure. It is also therapeutic in that they can drain excess pressure and measure the pressure before they close the LP so that they leave you at a lower level. However short term relief. The body reproduces the CSF on a regular basis... Goof luck!

rcykb1 04/05/2017

Oops that was supposed to say good luck.

magnatomamma 04/05/2017

I am curious to know what your impression/fear is of getting a LP? I have had some bad ones but they seem to have always been the ones performed by resident docs. If you work and/or go to a teaching hospital, absolutely ask that the attending doctor perform the procedure. I have had spinal leaks after the doctor has tried more than one location and mucked around a lot. I have not had a problem when the IR doctor has performed the LP using fluoroscopy. It's uncomfortable but not terrible. Do stay laying down afterwards even if they send you home after an hour.
I have found that neurologist are reluctant to order one just for pressure readings, but it's like the first thing a neurosurgeon will order. I think it's better to definitively find out what you are dealing with and if the pressure is high, to have some drained to see if you get relief of symptoms, even if only for a couple of days. I would ask your doctor to order one.

SamSam19 04/06/2017

My neurologist seems to not really know to handle this diagnosis and keeps blowing me off when I call in pain. The pressure is getting to be too unbearable, I've been thinking about going to the ER because of it. From what I see on a daily basis with LP's at the hospital I work at are that they aren't traumatizing. I think my fear is more that I know the people doing the procedure and the fact that they know me. I'm limited to where I can go to have one done because of my insurance. Also, I'm overweight and feel like the doctor doing the procedure will have trouble getting the fluid therefore leading to complications. I don't know, It may be all in my head.... pun intended!

SamSam19 04/07/2017

Update- went to the ED this morning after waking up with painful pressure in the back of my head. My neurologist was the one on call and he didn't think a MRI was necceaary but they did perform a Lumbar Puncture. Had a moment of tears during it due to the pressure of the needle but overall not too bad.

Sophiasmom06 04/17/2017

so what was the opening pressure on your LP? you definitely need a second opinion because they should have gotten the LP before putting you on Diamox. and the sed rate indicates you need a major rheumatology workup, I hope the rheumatologist did a bunch of lab work? with the IIH diagnosis you need to be evaluated for Lupus and antiphospholipid syndrome, hypercoagulation. If the rheum saw you before the IIH diagnosis was made, you need to go back and ask for a re-evaluation.

Tricia90 04/18/2017

I think you should go ahead and have the LP, I had it done and it wasn't that bad, yes it hurts for a day or two afterwards but nothing you can't handle. To be honest mine only helped for about 2 days then it builded back up but everyone is different. It helped my doctor to know that my opening pressure was 47 and was not suppose to be higher then 20. So now I have to have surgery (a shunt put in either my back or my brain) which I'm going to go ahead and get that over with ASAP. Do whatever you have to do, you don't want to go blind. I am also on 1000 mg of diamox and the side effects are not pleasant the tingling in my feet is especially aggravating, the tingling in my face, and the frequent urinating is REALLY annoying, but my doctor told me to just stick it out. Did your doctor do a MRI or are you having the LP to diagnose you?

SamSam19 04/18/2017

I really appreciate your inputs! I have not had a MRI which is frustrating because I have stressed to my neurologist that I am worried about what's going on behind my eyes. I have to get a repeat LP due to the doctor not documenting the opening pressure. I am in the process of setting up an appointment with a different neurologist who knows a little more about this diagnosis. I saw a rheumatologist when my symptoms first started and he was able to rule out Lyme, Lupus, and a few others.

Sophiasmom06 04/18/2017

wait wait wait wait...... you finally had the LP and they didn't do the OP? or they just didn't write it down? didn't they tell you what it was? and you absolutely need an MRI and a brain and neck MRV. and you need a new neurologist because this is ridiculous.

slsimpson 04/19/2017

I was diagnosed with iih back in August 2016 been on diamox 1000mg daily ever since. It sucks. What is the purpose of the MRI?

SamSam19 04/19/2017

They didn't do the opening pressure at all. I was told "it was missed". It's scary to think that something as crucial as that could be missed. I will be demanding an MRI VERY soon!

Sophiasmom06 04/19/2017

isn't that WHY you had it done?????
the incompetence in medicine drives me insane. and I'm a doc.

alybehr 04/20/2017

Anyone on birth control with this symptom needs to demand a head CT. Child 21 having sheath fenestration due to this and clot in brain. First ER sent her home. Ophthalmologist took one look and said go to ER. MRI did not show anything but CT did. lP shot out of the tube. The sheath procedure was a success and vision restored. Updated 4/21

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