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Old 03-03-2017, 03:27 PM   #1
shezbut
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Frown I feel alone

I was just Dx'd with TN last week, and I just want to cry now. I feel misunderstood by doctors, family, and co-workers. I am tired ~ physically and emotionally. Just hoping to talk with someone who can relate to me.
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Shez

In March 2006, I had a partial left temporal lobectomy to remove my seizure focus. It worked well to control complex partial seizures, but left me hyper-sensitive to light and sound. Migraine headaches increased in severity as well as frequency.

In March 2007, I slipped on the ice and fell upon the left side of my head. The effects were mild TBI, a moderate concussion. The TBI effects increased light and sound sensitivity further, as well as migraine headaches. Seizure disorder got shaken up, requiring new medications to control complex partial seizures.

The long-term effects of these brain issues are very poor short-term memory; difficulty regulating emotions; major depression; anxiety; easily overwhelmed; word-finding difficulty as well as mixing up my words (but not recognizing my mistakes) and an extremely difficult time with decision-making. I also got divorced and am the secondary co-parent of our two daughters. That was a huge blow to me!
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Old 03-05-2017, 11:45 AM   #2
ErinBear
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Hi Shezbut,

I'm so sorry to hear about your TN diagnosis. I have trigeminal neuropathy, which is not exactly the same thing, but it is similar. I wondered if you have been able to talk with a neurologist about your TN, and start any treatment? It is a really tough diagnosis, but there are some treatments which can really help for many patients. Sometimes it takes awhile to find the right treatment for each person.

Have you also heard of the Facial Pain Association? They are an excellent resource if you are in the United States. You can look them up online.

Sending lots of good wishes to you. Please hang in there, and take gentle care of yourself.

Take care,
Erin
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"Thanks for this!" says:
kwebster (Yesterday), shezbut (03-05-2017), St George 2013 (03-06-2017)
Old 03-05-2017, 08:08 PM   #3
shezbut
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Default TN Dx and Tx

Quote:
Originally Posted by ErinBear View Post
I wondered if you have been able to talk with a neurologist about your TN, and start any treatment? It is a really tough diagnosis, but there are some treatments which can really help for many patients. Sometimes it takes awhile to find the right treatment for each person.
When it came right down to it, I saw my epileptologist (who actually teaches neurology at Mayo Clinic) for guidance & in hope that he would find the right treatment for me. My epi quickly deduced my problem to be TN after some further tests. He then prescribed carbamazapine to me ~ and saw me 1 week later. Amazing! My pain is around 90% gone. Thank goodness!!

Quote:
Have you also heard of the Facial Pain Association? They are an excellent resource if you are in the United States. You can look them up online.
I haven't heard of the Facial Pain Association...I will certainly check them out. Thank you for the tip! Very best wishes to you and finding the best way for you to treat your neuropathy.
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Shez

In March 2006, I had a partial left temporal lobectomy to remove my seizure focus. It worked well to control complex partial seizures, but left me hyper-sensitive to light and sound. Migraine headaches increased in severity as well as frequency.

In March 2007, I slipped on the ice and fell upon the left side of my head. The effects were mild TBI, a moderate concussion. The TBI effects increased light and sound sensitivity further, as well as migraine headaches. Seizure disorder got shaken up, requiring new medications to control complex partial seizures.

The long-term effects of these brain issues are very poor short-term memory; difficulty regulating emotions; major depression; anxiety; easily overwhelmed; word-finding difficulty as well as mixing up my words (but not recognizing my mistakes) and an extremely difficult time with decision-making. I also got divorced and am the secondary co-parent of our two daughters. That was a huge blow to me!
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Old 03-05-2017, 09:56 PM   #4
ErinBear
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Hi Shezbut,

I am thankful that your epileptologist was able to help you. Carbamazepine is a good medication and helps a lot of people! I'm so glad it helped so much for you. Having the symptoms gone 90% is a huge help, even though I imagine at times you wish they were gone completely. But 90% is so much better.

I have had really good help for my problem, thanks. I've been living with it for over 20 years. We tried many medications. Some of them helped a bit, but my body wouldn't tolerate them. Some of them didn't help. Now I take Topamax, which is a different type of anti-seizure drug (carbemazepine is also an anti-seizure drug). It is working pretty well for me. I also do other things that help me. I know things that set off my pain, and I am careful to avoid those things. You may learn some things which can be problematic for you, too. If you can take good care of yourself and avoid those things, that can reduce the frequency of your episodes - that remaining 10%. Sometimes it is something simple, like trying to avoid being out in windy conditions. I often use an umbrella to shield my face from the wind if I do have to go out when it is very windy.

The Facial Pain Association is a very good resource. They recently changed their name, as they were formerly the Trigeminal Neuralgia Association. They have a book on Trigeminal Neuralgia they've published called, "Striking Back! The Trigeminal Neuralgia and Face Pain Handbook." I have a copy, and I found it really helpful. As you said, it can feel a bit lonely to have this problem, and part of the good thing about the book was reading it and knowing you are not alone with this problem.

Please feel free to write again. I'll keep checking this thread. I send lots of good thoughts your way!

Take care,
Erin
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Old Yesterday, 02:00 AM   #5
shezbut
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Hello Erin,

I'm glad to hear that you've found a medicine that is finally working pretty well for you. Twenty years ~ you sure deserve a break! I am lucky in that my epileptologist has helped me with so much over the past 10+ years.


Best wishes to you!
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Shez

In March 2006, I had a partial left temporal lobectomy to remove my seizure focus. It worked well to control complex partial seizures, but left me hyper-sensitive to light and sound. Migraine headaches increased in severity as well as frequency.

In March 2007, I slipped on the ice and fell upon the left side of my head. The effects were mild TBI, a moderate concussion. The TBI effects increased light and sound sensitivity further, as well as migraine headaches. Seizure disorder got shaken up, requiring new medications to control complex partial seizures.

The long-term effects of these brain issues are very poor short-term memory; difficulty regulating emotions; major depression; anxiety; easily overwhelmed; word-finding difficulty as well as mixing up my words (but not recognizing my mistakes) and an extremely difficult time with decision-making. I also got divorced and am the secondary co-parent of our two daughters. That was a huge blow to me!
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