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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loveyalots143 07/01/2013

Ok so first off I admit it, I've WAAAAAAAY overdid it the last week (so sorry for only getting on here to complain and not gotten back to everyone). And if that's what's up or sounds familiar to what could be up please feel free to tell me that but I've got a weird thing going on that I'm not sure if its a new symptom or what.

The last week has been vacation Bible School at our church and as youth pastor I usually get to be the director...well, Last night, after being home and resting all afternoon I started feeling like I was falling Even though I was sitting in the recliner or laying in bed. When I was walking it was unsteady at best but I figured that was just from being tired? This morning it's still continuing so I find myself pushing myself to the middle of the bed, and hanging on to the walls when I'm walking...any suggestions?

Thanks,
Kristena

deleted_user 07/01/2013

Hey there,

That must be a very odd and scary sensation...I don't know how much help I can be, but I'm thinking maybe it is not PTC related?

Sounds a bit like an Inner Ear infection? My aunt had very similar symptoms after she went on a cruise and it ended up being an inner ear problem, and the inner ear does help us keep our balance.

Maybe something Neurological is going on? Have you had an MRI recently?

If it is PTC related, I don't know what to connect it too...Dehydration, change in Med Doses?

No matter, I think this symptom is far enough out in left field to put a call in to your PCP and get checked out...We all want you to be safe and we don't want any injuries due to falling or for this symptom to hit you suddenly while driving.

Please let us all know how this all turns out...
Best, LuLu

SeaSprite 07/01/2013

Hi, Kristena,

I forget. Are you on Topamax, Diamox, or Lasix?

I felt like that during a period of time and my electrolytes were way off and my heart was doing wonky stuff as a result. Please have an eeg and bloodwork done just in case. Pronto. Better safe than sorry. Right this very minute, after calling your doc, eat lots of high-potassium foods and drink lots of water. Could be something else but better safe than sorry.

If not heart-related, then could be a type of dizzy maybe???

Call your doctor now, okay?!

Seasprite

SeaSprite 07/01/2013

Oh, unlikely but possible - feeling like you are falling can be one of those "Alice in wonderland" seizure like events. Can't find the string right now where we talked about that.

loveyalots143 07/01/2013

Well, I've made it through most of the day with no falls and minimum bumps into things. Water is my friend and my appetite is gone though. In answer to your question, I'm on both Diamox and topamax - they just doubled my Diamox and lowered the topamax though. Who knows this just gets weirder and weirder.....

Thanks again, and yes I will be calling the dr in the morning,
Kristena

magnatomamma 07/01/2013

I have episodes like that with my balance completely off, and running into walls, etc. It usually did not last more than a day at a time and I associated it both with my pressure being high, and probably pressing the nerves to the inner ear, and also irritation of the occipital nerve. If I slept on the right side of my head, where most of my pain and pressure are located, I would wake up and be unable to walk straight. I had an occipital nerve block that calmed things down considerably.

Sophiasmom06 07/02/2013

that is Vertigo.
a very common symptom of those of us with IIH.
the question is why are you having it all of a sudden now, when you didn't or it wasn't as significant before.
it may indicate something going on with your inner ear, that may or may not be related to the IIH. labrynthitis can do this, can be caused by a viral infection. you can try something for motion sickness, I think they use meclizine for it. now, apparently the perilymph in the ear is contiguous with the CSF compartment, and the treatment for Meniere's disease which causes vertigo, is Diamox. so I'd be suspicious your ICP is going up, so I would contact your doctor, definitely.

loveyalots143 07/02/2013

Ok I called them - but it was later due to having to take Benadryl last night and then again this morning! I ITCH like crazy!!! I don't know what is going on but I called my PCP and the neuro to find out! This is not adding up - feeling like falling, itching, oh my goodness the head pain, stomach problems, and I'm just waaaaay over stimulated in general causing me to just want to sit in the dark with no noise.

Is this meds? If so, something has got to change and quick'

Thanks again, this girl is going bonkers,
Kristena

loveyalots143 07/02/2013

Well, heard from my PCP, I have to talk to the neuro doc about all this instead of her! So I still wait...

loveyalots143 07/03/2013

Neuro said reduce Diamox back down to 1,000 mg a day - check.

On top of other symptoms though today I have Severe Stabbing pain on the left side of my head - about one per hour that shoots down my shoulder and arm to fingers and leaves my elbow tingling for 5 min afterwards (I timed it). I have regular pressure head pain otherwise but this is in addition, possible migraine type?

I really don't feel right but don't want to be told its just in my head or I'm after drugs...suggestions?

Sophiasmom06 07/03/2013

OMG I just got called a hypochondriac by a family member so I really don't know what to say. I think it probably depends on who is listening rather than on what you say. if they have a negative attitude for you, you could die in front of them before they will believe it. just tell the truth. don't be dramatic, just be matter of fact. give them something objective, like the pain is a 9 out of 10. give them a description of your functioning; "I'm so dizzy I can't walk at all and I'm afraid I'll get hurt just getting up to use the bathroom. I can't drive so I am housebound and there is no one to help me" for example. paint the picture of your situation, so they can assess urgency for finding a solution. if your neuro doesn't listen, then call someone else or go to ER.

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