My Neuro Visit

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9 months after being diagnosed by my GP with TN, I saw a Neurologist today. Well worth it. Formal diagnosis of Atypical TN. (As in, my GP said it was TN, but always good to get a specailist to confirm, and rule anything else out AND I didn't know what type of TN I had). Decision to put me on Topamax to fight the migraines and try to get off the Tegretol. Other drugs mentioned, but can't do everything at once! Neuro was quite adament about getting me off the Tegretol as its not working 100% for me and the side effects are horrible. Anyone who hasn't been to a Neuro yet - GO! Feel like I finally have someone on my side whose going to fight for my health. Need an MRI to check out the Trigeminal nerve but other than that looking forward to trying something new to the Tegretol. Soooooo over it!

Questions I asked were:

1.What do you think is causing my problem?
2.Is there more than one condition (disease) that could be causing my problem?
3.What tests will you do to diagnose the problem and which of the conditions is present?
4.How good are the tests for diagnosing the problem and the conditions?
5.How safe are the tests?
6.What is the likely course of this condition? What is the long-term outlook with and without treatment?
7.What are my treatment options? How effective is each treatment option? What are the benefits versus risks of each treatment option?
8.If my symptoms worsen, what should I do on my own? When should I contact you?
9.Are you aware of each of the medications that I am taking? Can they adversely interact with the medications you are prescribing for me?
10.Should we monitor for side effects of the medications that you are prescribing or for their interactions with other medications I am taking?

These were all taken from http://www.medicinenet.com/script/main/art.asp?articlekey=13683

Thought my Neuro was brilliant, answered all my questions well. It's not nice to be diagnosed with TN but the Neuro had a great attitude that "bareable pain" is not good enough and the aim is no pain, no side effects. And thats all I wanted, even if it's not possible, lets at least TRY to achieve it ;-)

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Hi Sabrina. My TN is on the right side and i get pain mainly in the area stemming from my temple, upper jaw, eye and nose and above my eyebrow. You’re the first person i’ve talked to with pain in the neck - is that behind your ear going down? What are your side effects like. Mine are hand jitters, memory loss, sleep (ALL the time) tearing up sporadically, nausea, weight gain and so on and so forth. I read your profile page - I have to say that eventually for me the side effects settled down. I hope they do for you too. For the memory loss in particular I went and brought myself a good diary and started writing daily plans about things i had to do - even putting on the washing and what time the washing machine would finish as i’d put on the washing and completly forget about it. i know this happens to the average person but being on these types of meds its like every-damn-time. once i was at dinner with a friend and sent the waiter away - for some reason i thought we had already ordered! (that was quite funny actually!) but boy, you really don’t feel like yourself. its just… crazy really. i just want to be able to function in a way where i don’t feel “useless” and i do believe i’m making progress - part of it is will power i’ve found. you really gotta believe in yourself and try hard to make it through the day staying in a positive mindset.
Anyway, i’m blabbing on. Best wishes to you Sabrina. x Susan.