Thats the verdict from the neurologist. He basically completely dismissed ‘Atypical Migraines’ saying nothing about what she is describing sounds like migraines. He went straight to TN afterr asking her a TON of specific questions about the attacks and then double checking all the reflex & balance things the previous doctors checked, plus a whole series of new ones.
Part of me feels vindicated for being so sure it wasn’t migraines and pushing for more, another part is sad for my baby.
For the moment he has started her on a low dose of Trileptol, and order an MRI. He wants to see if anything is pressing on the nerve, setting it off. I expected the MRI, but the red tape to get it done is infuriating - and we purposely have the expensive no-referral-needed insurance, and it’s still 7-10 days for pre-authorization for MRI. Sigh. I think I freaked the guy at the doctors office out when I said ‘How about I start stabbing them in the face for hours a day, and in 7-10 days we’ll talk about figuring out why that’s happening?’.
I’m usually extremely accommodating and understanding, but I’m now stressed from watching my baby hurt, and she and I both are sleep deprived. A smart organization would give us what is needed and get out of our way.
good for you for not being a pushover. I don't think this is the time for being accommodating. It must be scary for both of you. The trileptal might make the lesser pain go away at first but at her age it may be strong enough to get the more sever pain to stop. If it works then you know that it's the trigeminal nerve for sure. I think you already know it is. But it means that the pain can be controlled, hopefully for a long time. Neither she nor you will like the side effects. But it's better than the pain. Be prepared for the side effects of grogginess, brain fog, dizziness, and she's going to fell "stupid". For example. Grammar and spelling are no longer possible for me. If she's still on it at school time, you will probably will have to talk to her teachers and principal and make arrangements in case of a bad attack and the side effects of the drugs. Make sure you let her know that it's not her but the stupid drugs. etc. but it's a good drug to stop the pain. I've read that many young people elect to have surgery in their early twenties or earlier and it works so much better than us oldsters. But see what the MRI says. I can't see why the wait on the MRI. If a person as young as your daughter is diagnosed with TN they have to be really thorough in trying to find a cause or no cause, or they would be liable for a law suit not to take the advice of a neurologist. Hope she's feeling better soon.
Part of me is so relieved that dr. Neurologist has started her in the Trileptol, to try to manage the pain. The other part of me is soooooo bummed for her with the side effects. KTRose already struggles with Visual Sequential Memory Disorder, a learning disability in the Dyslexia category. This is just going to nail her right in that struggle. Really?!? Our choice is debilitating, completely awful pain, or even worse academic struggles than she already has?
She has overall kept an amazingly good attitude about her academic struggles (and additional 3-5 hours per week of special tutoring and work), especially given younger sister who is breezing 2 years head in everything. Making it worse just seems so unfair. But of course I’d never argue for her to continue on with the pain, since the pain, anxiety & sleep deprivation will just nail her academically and so many other ways. I’m soooo hoping the Trileptol only has to be a short term fix until a different long term one can be found.
Thanks for your input and advice, I really appreciate it as we navigate these waters.
Also be a the watch for depression. It goes hand in hand with this terrible illness. Also it's going to be hard trying to explain this illness to her teachers, your family. They may be understanding but will never know. You've seen it but it IS unbelievable how this feels. She will never be able to go anywhere with out her pills and she'll know that better than you. The anxiety about her next attack, if and when, how will she deal with it, will be on her mind. Her friends won't understand why she acts drunk sometimes (anticonvulsants) especially for an 11 year old. What if THEIR parents think she's on drugs? They won't truly understand either. It's the beginning of the battle but the pain is the main issue. This pain kills which it's called the suicide disease. But she's got a great mom who is fighting for her. If the MRI shows nothing serious pressing on the trigeminal nerve then pain and stopping the pain will always be on her mind. If the MRI shows something, well I'm not going to go there. Here is a great writing on how to take care of someone with TN. Give it out to your family etc. It really makes you understand how this is, at least for us older people.
if you decide to get the book striking back. It's about $30 on Amazon.com