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Old 09-17-2011, 09:32 PM #1
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Default How does one function?

My doctors suspect TN of some sort, but I do not see the neurologist until the 28th. The pain has been going on, constantly, since June. I started Lyrica last night, and I do have a codeine based pain reliever if it gets too bad, and since I just started the Lyrica, it does. Moving my head seems to make the pain worse, as does chewing, talking too much, laughing, etc..., etc.... My question is this, how does one function? I am hopeful that I will eventually have some sort of relief, but for those of you in the trenches, how do you function with this? I have a high pain tolerance, and I have lived with Sjogren's Syndrome for years without the need for regular pain meds, but this neuralgia turns me into a big baby. I would rather give birth several times a day than deal with it. And at its worst? I am completely nonfunctional. I drive my oldest son, who is handicapped, to his classes, appointments, etc..., so I must be able to get around. How do you all manage? Until the cavalry comes galloping in, what do I do?

Last edited by booklass; 09-17-2011 at 09:34 PM. Reason: misspelled word
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Old 09-18-2011, 08:04 AM #2
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Welcome to NeuroTalk though we are always sorry when someone needs to be here. I don't know if I have any specifics that will help, but do what you can and ask for help if and when you need it. My pain got so bad before I got meds that I had to go to the emergency room. But for me Tegretol took the pain away almost instantly once I got a prescription. Maybe an emergency room visit would speed things up if waiting till your appointment is too hard. Try not to give up hope. There are things that should help but sometimes it takes awhile to find them.
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Old 09-22-2011, 11:54 AM #3
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Default Thanks, JJ

I was started on Lyrica, and I do have pain meds on hand if I need them. I've been so tired lately, but the doctor just called the other day and told me that my thyroid did a swan dive, so that may be part of it. I still have more testing to go before we know exactly what is going on. I am blessed that I do not have to work outside the home, but I do have to work. However, I honestly am trying to imagine how those of you who work outside the home manage.
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Old 09-23-2011, 06:07 AM #4
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I hope correcting the thyroid helps. And you may adjust to the meds over time if they are part of what makes you tired. Keep us posted on how you are doing.
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Old 10-18-2011, 11:47 AM #5
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Default so sorry, I know it's hard

I've had atypical trigeminal neuralgia in my eyes for 6 years now. I'm on gabapentin, cymbalta, lorazepam, and tramadol.

My mom just developed trigeminal neuralgia over the summer. Because of my experience I knew right away what it was. She got in to see a neurologist and was put on Trileptal (Oxcarbazepine). By the 2nd day she was feeling better and the lightning bolts had stopped.

Everyone is different so nothing will work for everyone. If you have the lightning bolts that are common then I would try the Trileptal. Neurologists are using it now as a diagnostic tool. If it works...then it's trigeminal neuralgia.

God bless!
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Old 11-03-2011, 07:52 PM #6
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high ammonia levels in our blood stream causes tn,,,,cut your proteine down,especialy animal
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Old 11-04-2011, 08:44 AM #7
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Default protein levels

I eat a mostly vegan diet, though not totally. I have never heard of this for TN...though for general inflammation. What article/research is this from?
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Old 11-06-2011, 08:07 PM #8
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every thing we eat produces ammonia,,control that,and you control tn
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Old 11-19-2011, 07:42 AM #9
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Hello booklass,

Function?

Well I couldn't. I couldn't work, couldn't drive, couldn't go out in public for fear of having an attack. MVD surgery literally saved my life. I'm TN free now and my life is almost back to normal.
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Old 11-20-2011, 12:41 PM #10
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Default Love happy endings

I do so love happy endings! 8-) I am glad the surgery worked for you, Zatochi. It is something I keep in mind. Right now, I am sem-functional. I just tire so easily.


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Originally Posted by Zatochi View Post
Hello booklass,

Function?

Well I couldn't. I couldn't work, couldn't drive, couldn't go out in public for fear of having an attack. MVD surgery literally saved my life. I'm TN free now and my life is almost back to normal.
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