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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Frustration and pain - just venting

loveyalots143
loveyalots143
Ok, warning I'm just venting/whining/frustrated/in pain so take this for what you will. I know the world does not revolve around me and my problems. I know there are many, many people who are in need of urgent doctor care more than I am. However, I am about sick and tired of the run around given by many doctor offices. Ugg! Right now, I'm in buckoo bunches of pain, zeroed in on the right side of my head to an area abt a quarter, I also have a squishy feeling to the back of my head (I really don't know how else to describe it), the floaties are here in full force and I can only barely see the time on the clock maybe 10 feet in front of me because its so blurry. My neuro doc won't return my calls except to ask when the neuropsych tests are or to tell me to go to the ER, my PCP tells me to call the neuro, the opthamologist says the eye problems is brain causing not the eye itself, called the new neuro and since they haven't seen me (and my appt is not until next Tuesday) they say go to the ER or call my PCP. Ugggg! Again, I am not the most severe patient or the only patient but ugggg! So my options are wait until next Tuesday or go Back to the ER (again) and be told headaches are not fixed in emergency rooms.

Sorry to vent/rant/etc. I just don't know right now. Thanks a bazillion for being here!
Kristena
mary1973
mary1973
I hope i can make a suggestion? Can the NO call the freaking ER and have the on call neuro meet you there?
SeaSprite
SeaSprite
Oh, Kristena, I'm so sorry your health has taken a dive and that you are going through that with your doctors. This is actually a pet peeve of mine. Everyone passes the buck. "A courtyard swept by many is a courtyard swept by none." Hopefully you can get a neuro or neuro-op that helps everyone work together as a team.

In the meantime, do you have a major teaching hospital within driving range? Go to that emergency room and plop it in their laps. At the very least they'll make sure your eyes are safe, give you an LP if they think you need one, and/or make a temporary adjustment to your meds.

BTW.... if you don't have paps, your opth is right. A common complaint among people in here is visiual symptoms when they don''t have paps. My neuro thinks it's just one more symptom of high pressure on the brain and nerves. The key is to get the pressure down.

Question: how happy are you with your neurologist in general?
magnatomamma
magnatomamma
Oh boy what a run around. Can you ask either your neuro or NO to order an LP and get a pressure reading? Or go to the ER and tell them to call in a neuro consult? The last couple of times I've been to the ER they have called neuro to come see me without my prompting. I would think this should be standard procedure given your condition. I think you will just have to demand it. If you aren't happy with your neuro, even tell them that, that you need a new neuro and ask them to call whoever is on call for a consult. Even tell them your neuro told you to go to the ER, and you need an LP to test your pressure.
I'm not sure what else you can do but demand it yourself. And have someone go with you.
loveyalots143
loveyalots143
Thank you all so very much. And before I go any further I am waiting for a call back about a ride to the ER right now but I'm very concerned. I woke up this morning with severe pain on my right side of my head, it literally goes in almost a line. If I push on it, I get extreme pressure in my nose but nothing comes out. My right eye is basically blurred out and my right hand is tingly. Like I said, I'm just waiting to hear back abt a ride to the ER but am still kinda ok very concerned.

Kristena
magnatomamma
magnatomamma
Well that is really miserable. I have a couple ideas, because I have had similar experiences. It sounds a bit like a major migraine, possibly triggered by occipital neuralgia. Severe pain, one sided, with eye pain and vision problems. Tingly extremities. Numbness or pressure in the nose (I don't know why that happens but it seemed to go along with tingly cheek and jaw). I had this all winter, until the last month or so. Do you happen to take Topomax? My migraines actually went away when I stopped taking the medication.
Of course, it sounds like your pressure it up too. Are you familiar now with the tests to check for stroke? Have someone check your smile, stick out your tongue & move from side to side, show your teeth. If any of these are lopsided those are signs of stroke.
Good luck today. Please ask to see someone from neuro!