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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I'm not complaining but I still don't get it

loveyalots143
loveyalots143
I promise to not complain! After reading through the last couple of posts I put on here I'm surprised you all didn't give me the big boot! I am confused though, and if someone wants to help me with some understanding I would greatly appreciate it. I called the neurologist in St Louis to check if the fact that I'm having major trouble chewing and swallowing food is a problem, and questioning the increasing head pain. His response is the same I seem to get no matter what, keep taking the medicine (Diamox and Topamax, which I am I promise) and if the head pain gets unbearable go to the ER and have an LP completed. Now, as a question, I have had 4 LP's done. Three of the four ended in a spinal headache ended in blood patches up to six days later. I know my pressure is up, and I know my pain continues to climb but I don't know if I really want to go to the ER and then the LP....any suggestions?? I know you all have more experience than I do.
sparksbm
sparksbm
I tried to post a reply to you last night, but I guess it didn't post or something. Anyway, I was wondering if you have TMJ? I know that this wouldn't explain any of the swallowing issues, but I have TMJ also and occasionally high pressure the pressure makes it flare up terribly. I also have a swallowing disorder of an unknown origin and that is also worse during times that my pressure is high.
As for your LP's, why won't your Neuro set one up for you under fleuro? The ER is the worst for LP's! Another thing to maybe ask for Bolt monitoring for your pressure, but that would mean you'd be in the hospital for at least a few days. I think a Neuro surgeon may have to order that.
As the last thing that my muddled brain can think of tonight, taking Diamox and Topamax together can be bad for you. Insist that your blood work is being somewhat frequently to make sure that your liver, kidneys, etc are all right.
hugs hun,
Brandee
deleted_user
deleted_user
I haven't read back to all previous posts so I apologize if I've missed something you've already explained. Can you give more detail about what you're experiencing when you try to eat? Agree with sparks that TMJ could be a factor. For me, my thyroid causes a lot of trouble. Constantly feels like I have something stuck in my throat, or like my throat suddenly becomes so dry, I can't swallow, let alone eat. Dental issues such as an abscess can also cause pain, clicking, freezing/locking and all kinds of other pains while chewing. Stress can also become a serious factor when we get to where we're expecting the pain because we KNOW it is coming.
loveyalots143
loveyalots143
The weird thing with the swallowing is its been gradual. I've had a couple of times of trouble swallowing pills early on but now it's everything. I will say its great for losing weight but I just don't think it's healthy either. The food gets harder to chew on one side and then when I swallow it, it feels like only half of my throat is trying to push it down. I do not have TMJD, but I do have an enlarged thyroid so maybe that's what is causing the problem...it just seemed coincidental because that's the same side that has the most numbness and tingling in my face - like all the way up under my eye. I keep telling myself someday we will get the answers, someday...

Thanks again! :-)
Kristena.
mary1973
mary1973
Hey Kristena,
My last post for a minute, i seem stalkerish today pozting right behind u, lol, im just reading the new stuff ccause DS is my morning paper so to speak.
I was suffering with trigemenial neuralgia, thats always a consideration with the facial symptoms, the swallowing, when was your last mri? On any of your mri did it ever mention an incidental finding of low lying cerebral tonsils? That is a major cause of losing gag reflex, choking is evidence. Just my 1....2 cents. Have a good one y'all.

Mary