Thursday, January 19, 2012

Having.... Trigeminal Neuralgia

For those not aware of Trigeminal Neuralgia (TN), it is awful.

My case was very complicated  - you can read about it if you wish in Medical History post.  I have been off Tegretol for 6 months.  The pain for me has for the most part subsided, however at times I feel a tingle sensation in my scalp on the left side and little jerk of pain on that side.  I also suffer from headaches often.  When I was on tegretol the headaches had subsided - I hate having headaches.... the only thing that works for me is to sleep it off.  I was given migraine medication - but I really didn't notice a change after taking it.

Sometimes if the pain is bad I miss the medication - but since I want to have a (TTC) baby that is not an option for me.

Since it's winter I notice TN a lot.  Living in Chicago, the cold breeze in the winter months seems to really irritate TN.  My ear on the left side hurts often and that annoys me the most.... to get through the winter I just picture a beach and to just "hang in there" spring will be here soon.  In 2010 when my medical drama began, I seem to be plagued with Sinus Infections.  I think when then sinus cavities swell is triggers the never and as a result I feel TN pain.

Here are some tips that helped me in the winter:
A good Scarf -
Wrap myself in a good scarf and try to cover as much of the left side of my face as possible.  

Humidifier -
 This helps my sinus's to stay moist and I have less nose bleeds. 

Eye mask -
This makes a huge difference if I have a headache light really bothers me.  I have the one pictured  above, I like it because it is adjustable (mine is so loose it hardly touches my face).  I picked mine up at Bed Bath and Beyond and I love it.


  1. Blythe, are you aware of the TN website with 2400 TN patients that works sort of like Facebook? GREAT support. and has a chatroom if you need to chat.
    It's truly one of the worst pains a human can experience, like the descriptions say. Sad you have TN, but always nice to meet someone who knows what we're going through.
    Blessings, Sheila Wall

    1. I will check out those websites. Thanks for writing.... it's nice to meet you as well.

  2. Blythe, saw your twitter link to your Blog when I searched for #TrigeminalNeuralgia. I too have TN. Was just diagnosed on January 09, 2012. I started out with an ever-present right side headache in September 2011. As the months went on, I started developing TN symptoms as well. Sorry to go on, I wish that no one ever had to experience TN, but it is nice to see someone else posting about it. I am keeping a journal of my life with this headache and TN at if you are interested.

  3. Thanks for writing, I will check out your blog!

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