Possible Pseudotumor Cerebri?

[nursegirl6572]

Hi there!  I'd appreciate any insight here!

In the Spring, I suffered with unrelenting headaches for approx 2 months, for which a reason was never found.  I had a CT that was normal, and some basic labwork.  Nothing more extensive than that.  Eventually, it sort of faded away, and other than an occasional h/a here and there, I haven't had that issue since then.  I actually ended up attributing the symptoms to a dental issue at the time.

Thing is....the whole entire set of symptoms is back as of about 3 days ago.  I have a headache that basically doesn't go away, and doesn't respond to ANY medication, including Imitrex I was Rx'ed in the Spring to try.  It is bilat, temple area, moderate, about a "5" on a pain scale.  I would say the h/a is a dull achey throb.  NOT sharp, not severe. I also have some pretty frequent twitching of my left eyelid (upper and lower lid).  Also, I have had some brief, fleeting dizziness.  Nothing severe, and nothing long lasting.  I can't say that the dizziness happens under any certain circumstance.  I had a few episodes of very MILD nausea about 2 weeks ago, prior to the onset of the h/a.  Nothing significant, relating to nausea, since, maybe very mild nausea here and there.  Certainly no vomiting, or even nausea significant enough to make me feel as though I had to vomit.   I DO have frequent tinnitus with the h/a, again, lasting only very briefly.  I get these odd sensations as though I am on an airplane when it comes to my ears...I'll get quick ringing on one side, then it will stop.  Also, just a general "fullness" feeling in my ears.

The other symptoms I have is a severe weakness in my legs, they feel "rubbery", as if they will just buckle at any moment.  I have noticed that if the headache improves at all, the leg weakness gets quite a bit more severe.  Also, I feel just "lousy" overall...fatigued, weak, etc.  No fevers, no other symptoms to speak of.  All of these symptoms are not normal for me.  I don't have much of a medical hx, other than MVP, depression, anxiety, one epside of Pancreatitis in 2007 secondary to gallstones...with a subsequent GB removal a week after the Pancreatitis.  I currently take no meds of any kind, other than buckets of Excedrin, which really doesn't help anyway.

My question is this...I went to the ER last night, and the doc recommended me seeing a Neurologist to rule out PTC.  I would fit the basic criteria...I am overweight (not grossly obese, but significantly enough, probably by about 50 #), and am 36 (Hx of 3 pregnancies, 2 healthy children...no menstrual irregularities, in fact my cycle is like clockwork).  I just wanted a few opinions on the likeihood?  I understand it is still a fairly rare condition.  I am aware of the manner in which it is diagnosed (via LP), and that an MRI/MRA should be done first, simply to rule out any other etiology.  I haven't had any visual disturbances to sepak of along with the h/a.  I have never been prone to h/a's....have never had sinus/allergy issues, etc  I guess the other thing that seems odd to me is that if, indeed..I was dealing with PTC, would my symptoms in the Spring of this year just totally resolve on their own?

Thank you in advance to anyone who can give me some opinions about this.  I know I need to be seen by a Neurologist, which I have already made an appt for on the 24th, but I wanted some insight in the meantime.

Thanks a million!

[misa327]

Hi Nursegirl,

Did you ever get a diagnosis?  

m

[nursegirl6572]

Hey everyone!  I MAY have some answers.  I went to my PCP yesterday, who initiallly dx-ed me with a Rt ear infection.  HOWEVER, what is interesting is...he said that on my CT in the spring...that it was noted that I had "sphenoid sinus disease".  WTF?

FIRST of all, I was NEVER told this...and 2nd, I'm quite unhappy that this avenue was never explored.  After doing some research online about Sphenoid Sinus issues....wow...the symptoms are almost mirror image of mine!  

Soooo....I have an appt with an ENT tomorrow to rule this out.  Makes total sense when I put everything together that it could be the sinus issues...especially since it actually showed up on the ct.  I am just in misery......and really not happy that I wasn't given the chance to look into this back when they did the scan...especially b/c the symptoms are so identical.

The PCP looked very carefully in my eyes and said that eveything looked okay there.  Thing is...with both the sinus issues AND the PTC, eye concerns are a biggie.  I don't want to mess around with this and need to get an official Dx.

Cath...I don't have any major neck pain to speak of....just the feeling as though my head will explode off my shoulders.  A lot of eye twitching on the left (mainly upper lid)....the right ear issues (virtually NO hearing at this point...completely "clogged" feeling).  My headache is still there of course....today it is more in the eyebrow area.  Also, I still have the weak rubbery leg feeling.  My BP was up in the doc's office yesterday too, which concerns me...it was 160/80.  My BP is usually 120/70-ish. Oh, and I've been getting more hiccups than usual.

I'll keep you updated....nothing concrete yet.  I'm thinking the sinus avenue makes a lot of sense.  But, I won't know for sure until I see the ENT.  I'll start there...and of course, I'll keep my appt with the Neuro.

Thanks again for your kind words.  I'm so frustrated!  I can't afford to miss any more work.  I've called off 2 nights now....and I am new at this job.  My 3 month probationary period is up 12/5.....after which calling off won't be as big a deal.  :0(

[Cath278]

Hi again.Things not much better yet?  I had what i thought was an ear ache for months but dr could nt find anything wrong.Then i started getting a swoowing noise in my ear, like there was water in it. You know the feeling? Like after you have been swimming?That is the cerbial fluid moving around. Also , not every one has Papilloedema with IIH.  At first you would need drops to see mine, not any more. Do you have neck pain? Or a sensation in the back of your head?It is very important that you tell your dr every little thing.It will help them to narrow down the possible causes. It took my dr a year to get mine right.But if you see a neuro they will know. Good luck! and keep posting .Cath278

[mamaberger]

As I mentioned I have the extreme headaches and head and ear pressure as well with normal lumbar pucture. I get so much pressure in my right ear when I fly it feels as though my ear is going to burst. My doctor can even see that there is fluid in the right ear he said probably from the pressure but they have never been able to identify where the pressure is coming from. I had clear ct's, mri"s but even went through sinus surgery because that was the only thing they could think of to cause this much pressure but it did nothing. I hope you get answers but prepare yourself that sometimes there are no answers. Please let me know what you find out. Take Care, Mya

[nursegirl6572]

Shelley,

No!  You didn't scare me.  I appreciate your insight and sharing your experiences.  I guess I'm going to head to my doc's office today to see if we can move on doing some testing to either rule it out.....diagnose it....or find out what is going on.  What is so strange is...like I said....my symptoms in the spring just eventually sort of disappeared after about 2 months, and I've basically been fine since then.  Very frustrating.  Very real symptoms...with no answers.  

Thanks again.  I'll let you all know if I find anything out.

[shelley568]

HI, I didn't mean to scare u. Ptc is different to everybody. Everyone handles it a little differently. Everyone has a little different symptoms. My open pressure before er surgery was a 52 or 520. I have loss alot of weight which has not helped me at all. I am on this other group which is only for people that have ptc. There are people on there that have went blind. There family members type for them. There have been other people that have had the shunt placed in there head called a vp shunt and have passed away. My friend on the group of 2years had this done last month and she developed a blood clot and that was that. Her name was Jennifer. If u would like the name of the group and the link let me know. It has helped me alot. Everyone there understands cause either they have ptc or they have had a family member that has had it and they have passed. Let me know. Good luck. O by the way, I have the ear problems like u do too. It's fun huh LOL no really though it's not funny. Shelley568.
Bye for now!!

[nursegirl6572]

How is it possible that my ear looks virtually normal on exam, yet feels 100% clogged?  ARGH!  My headaches are a wee bit better, but the ear symptoms are the worst.  I was presribed ear drops, for just pain control in my ear, but I'm reluctant to take them, for fear something else is going on.

Any more ideas?

[nursegirl6572]

Thanks for all of your posts.  My headace was awful this morning, and starting Saturday, my right ear is super clogged feeling.  I went back to the ER sat am thinking maybe that was the issue.....I told the ER doc about possible PTC, he looked into my eyes and said they looked okay, but that I would have to be dilated for a more thorough look.  Right now, the h/a is so-so, but my right ear feels as though it is completely clogged, as though there is fluid in there.  And, of course, like I said before, since the h/a is a bit better, my legs feel like jello, super weak.  I am just SO frustrated.  I guess I need to officially rule this out....I just don't know how I'm supposed to function in the meantime.  :0(  I feel horrible.  The ER doc said that my ear looked a wee bit red compared to the other, but overall, it looked normal.  Also, this all started about a day or two before getting my period this month.  Any more thoughts?  I'm about at my wit's end!  Thatnks again to all of you for your input!

[Cath278]

Hi.I hope you are feeling abit better. I was diagnoised in July this year with IIH/BIH/PTC. It has many names but the one being used the most is IIH. If you are waiting to see a neuro on the 24th of the month you should see a Ophthalmlogist first if you can. It will save time because you will be sent there anyway. THey will be able to tell you if Papilloedema are present.That means the optic nerves and disks are  swollen, from being surrounded by cerbrial fluid. The next test is usually a MRI, to rule out any thing else.It should come back clear. Finally, a lumber pucture, to see what your "opening " reading is. It should be 10-14,(100-140). Mine was 460-46 just to give you an idea.
I was having trouble for at least 18 mths  before the diagnoises. I was having what I thought were migraine and trouble with my eyes,( I wear glasses).I was also being treated for the wrong illnes for a year.IIH is very rare and not all drs are aware of it or recognize it. The very best with your tests and your app with the neuro. Dont be afraid. Its not that bad. If you need to talk or ask questions, feel free to contact me.Please post after your app. I would like to hear how you got on.Cath278.

[mamaberger]

I don't think ptc effects the legs to feel weak. I started out with headaches, head pressure and also had pain in the knees the few times the headache let up the pain in the legs was worse. I now have the headache chronically along with the leg weakness and general weakness in all muscles and still no diagnosis. Let me know what you find out. I had a lumbar puncture to rule out ptc. If you make an eye appointment they can usually tell from that. What I have is severe pressure behind the right eye and when pressure gets bad goes into both ears sometime with popping sounds when the prssure is high. I even went through sinus surgery because they said may be the problem, but it was not. It is so hard to believe you can feel so much pressure and have a normal mri and lumbar. There are a few threads on people who have this debilatating head pressure with normal tests. Hope you make out well at the neuro and please let me know what you find out.

[shelley568]

HI, I do have ptc. It's horrible. I have a lp shunt. I have the one that runs off of gravity off the earths natural flow. Don't get that one. My headaches never went away even after the shunt. Some people after the shunt there headaches never go away. But, if your pressure is too high then u could go blind or even worse one dr. told me death. Be careful with this disease. I now need a battery operated shunt put in. The gravity one doesn't pull enough fluid out quick enough so I have too much fluid still built up in my brain. Just please keep up with this. This is a dangerous disease u r playing with fire and u can go blind easily. I am not trying to scare u I am telling u what specialist after specialist have told me. Read my profile then u will understand. Take care and I hope this helps u.... O and also I am on pain mngmt. I have too ... Take care shelley568

[nursegirl6572]

Thanks so much for your input!  It sounds like a LOT of cases end up being dx-ed as a result of an eye doc visit.

I just cannot understand what could be causing me to feel so lousy.  I just feel as though I am going to fall over any minute, weak as a kitten.  Especially when the h/a's aren't at their worse.  :0(

I know PTC is still fairly rare, I'll be happy to get some sort of answer so I can move forward.

Thanks again for your input.  I wish you the best, and hope your PTC is manageable, and eventually goes away completely.  Take Care!

[crystalhanzelka]

Hi!  I was diagnosed about a year ago with PTC.  The only symptoms I was experiencing were headaches.  My dr sent me to the eye dr to make sure my vision had not changed resulting in h/a.  That is when they found papilledema (sp) (swollen optic nerves).  I have had an MRI/MRV and then an angiogram to rule out a thrombosis.  Which I did not have.  I have had several LPs and my pressures have been 36, 25, 35, 27.  Normal is 20 or less.  I am currently taking Diamox which I am not sure is helping.  I just do not want to have a shunt put in.  That thought scares me.  Your next step since the CT was normal would be to do an LP and MRI/MRV.  I am not overweight.  I have heard that if you loose weight it could go away...given all other possiblities are ruled out.  I dont know, because I have heard of several people with this for like 20+ years.  It is basically a pain control problem and vision issue.  Let me know if I can be of any other help...I have done extensive reading on this.