Liz K.'s Page

Hi Liz - how are you doing? All is well here. I got your email from a week ago and just wanted to say hello!

Hi Liz -

From what I've been told, I'm not a candidate for surgery due to the fact that I have idiopathic TN (my neuro cannot find the cause of the TN - so where do would be the starting place for surgery??  Nobody knows....).  I am currently working with an acupuncturist and it appears to be working, but I may also have an ear infection right now, so it's screwing me up....is it my TN pain that's causing me discomfort or is it an ear infection.  They are so close together....almost on top of eachother, so it's difficult to distinguish which is which.  I tried calling my primary dr to get an appt to check to see if it's the ear thing and she's out of the office this week.  I have an appt with my neuro on the 14th, so I think I'm just gonna suck it up until I see her and see what she thinks I should do.  I have a feeling it's going to be a loooong week.  :o(

Liz,

From what you have said, I think your pain is much worse than mine.  I'm sorry you are having to endure it.   I hope the doctors are helping you keep it under control.

Take care and be well! 

Her name is Micaela Cook, she has already tried GK. It hasn't really helped. She will probably get another dose of radiation in April.. sadly .

Liz yes my plate is very full with all the kids and my Daugter with MS so far the one down fall she has noticed is her mind is wanting to get moving and do all the things she was used to doing before the Chemo but her body is not on the same wave. I told her that it will take time and we all knew this may happen. If she found that she just to wiped out from it that she has  control of stopping the Chemo. 

Thank you for the warm thoughts have a great day.

Gina

Hi Liz,

I have an arterial loop thats hitting the nerve that he clearly saw on my MRI. He recommended MVD and said I have a very high chance of not only doing well but it taking care of the pain. I'm in a situation where I won't have enough PTO until summer to take off for the surgery since I was just on maternity leave. I am still unsure about the surgery. He did prescribe me Lyrica that i'm giving a shot again. I really hope it starts to work soon. 

He did get me in touch with a patient my age who has 2 little ones like me. We are getting together in the next couple weeks. I have a follow up appt with the doc in April (or sooner if I need a change in meds).

Thanks for the follow up!

Jen

 

Thanks for that Liz. I've been reading about how to try and manage the pain...easier said than done, especially for those close to you too. I've a couple of really bad days, and as you have had, three or four good ones. It just seems like a waiting game somehow, waiting for the next bout to come along. I have another appointment next week at the docs for a check up so fingers crossed. I'm someone who hates taking prescribed medication, difficult when you have TN. You have to do what you have to do I suppose.

I hope the weather in your vicinity doesn't turn out to be as bad as you anticipate. We have had one of the coldest, snowiest UK winters in a very long time and unfortunately my elderly mother died last November which meant I couldn't be with her at the hospital because we live way out in the country where we were cut-off for three weeks. A friend told me that could have been the trigger to set this off but I'm not sure...have you any thoughts on that?

I hope you have a good week too whatever the weather.

Peter

Liz,

Thanks for your comments.  Unfortunately, I can't wear contact, because I have abnormally dry eyes.  :-(

Aye, the pain Fibromyalgia and TN causes is unbelievable at times.  Nonetheless, I ended the medications because they were making me confused and fatigued.  I also grew tired of being physically addicted to them.  I began the weaning process four months ago. 

I wish you the best during your healing journey!

Liz,

 

Thank you for your kind welcome.  Yes, so far, my pain has been mild compared to what I'm reading about.  However, it has been changing rapidly.  3 weeks ago I had an isolated incident in a single tooth.  Now I have pain in all my teeth on the right side whenever I shower, get breezes on my face (warm or cold), cry or sing (I assume facial movements).  So I am trying my best to stay positive but can be a bit fearful at times.  I already take topamax for migraines and my doc gave me tegretol for this.