Here we go again...

[Literophile]

Okay, a lot's gone on since I last posted. So let me explain... no, there's too much... Let me sum up:

Had the abdominal CT scan--results were normal (phew!! That means no tumors! At least, not there; but that's the next step in finding out what's wrong.)

I'm going to write a series of books (Lord willing) about conditions people are afraid of, starting with E. If y'all want to contribute, I would love the insight and will list your names in the thank you page.

My "yellow attacks" have been getting worse--so much so that whenever I eat, I have them. I've barely been eating because of it. :/

I found out that a surgery I have had may have cause this madness. I had surgery on my hard palate and the doctor had to remove the Trigeminal Nerve (although it grew back--I have feeling in my mouth). Apparently, though--and he didn't know this when I asked him about it--damage to that nerve can cause migraines and seizures. So we're back on the merry-go-round of... merriness. Mom got the name of a ne urodentist and I'm going to be checked there for anything.

That means it's possible that I don't have PNES (although certainly NES) and I could have comorbid epileptic seizures.

Has anyone ever had any surgeries where damage was done to the trigeminal nerve? Because I keep looking for stuff that my mom has found about it, but can't, so I'm just wondering if anyone has had a similar experience?

 

[Nakamova]

So sorry to hear about this. I know damage to the trigeminal nerve is responsible for all sorts of things like facial neuralgias, and splitting headaches, so I wouldn't be surprised if it's the culprit. Sucks that it's a surgery side effect. Are you on meds to treat? I know Lamictal and other AEDs have been used to treat trigeminal neuralgias.

 

[huskymom]

((Big Hugs))

 

[Literophile]

So sorry to hear about this. I know damage to the trigeminal nerve is responsible for all sorts of things like facial neuralgias, and splitting headaches, so I wouldn't be surprised if it's the culprit. Sucks that it's a surgery side effect. Are you on meds to treat? I know Lamictal and other AEDs have been used to treat trigeminal neuralgias.

No, the doctors said there's nothing wrong with me, so I'm not on any medication. We'll see if that changes after I visit this neuro/dentist guy. :/

 

[Endless]

Literophile,

Huh? Nothing wrong?

There is research linking damage to the Trigeminal nerve, headaches, and seizures? And your doctor says there is nothing wrong? I respectfully disagree. We've been in here with you and heard what you are going through. If there is any possible physiological cause, your doc should have been following that trail all the way to the end. I am so sick of hearing about doctors who when they don't know the answer, blame it on the sick person by saying there's nothing wrong or it's all in your head. <okay, end of rant on your behalf>

I am SO GLAD you are going to the new doc (dentist/neurologist guy). I am hoping he finds the answer, and that there is a treatment for it. It would be so great if you were headache or seizure free.

Please let us know what the new guy says.

<<<<<BIG HUGS>>>>>

 

[Literophile]

Thanks, Endless. Sometimes it's hard to believe they're wrong--what if it IS all in my head? Other times I wonder how I could ever think the doctors were right. It's very confusing and incredibly frustrating.... And what with school and everything, dealing with this stuff has been challenging. I couldn't do it without the support of everyone here. I hope I find out what's really wrong.

I will definitely let you know.

 

[Meetz1064]

I really

can't stand it when docs seem to have a G-D complex, like this one seems to. I mean, really, by now, YOU know how you feel, and what's going on inside you with the pain, etc. And with the research that you've done and can show, they SHOULD pay attention........URG.

I'm sorry, I'm going to get off my :soap: now. Docs like that one just burn me up, though.

*walking away, counting patiently*