Feel Like a Prisoner in my own Home

I am new here so. I am sorry I have so many questions.

I have an appointment with a Neurologist on the 27th of this month. What should I expect from this appointment, it is the first one with him.

I had my firs attack on Dec. 18, 2013 with pain shooting through my right eye like a dagger going through it. Scared me and my husband because I was screaming with pain and ended up in the ER. Had a second attack while there after I blew my nose and had another screaming attack. The next day went to my doctor and had another attack and she thought that it was my eye so she sent me to eye doctor. Ended up going to Wolfe Eye Clinic and the ended up sending my to University of Iowa Hospitals eye center and told me it was not my eye, which I could have told them that because my sight was just fine and was having pain in my forehead on the right side plus my cheek and upper lip on the right side of my face also was trigger points for pain going to my right side of my forehead. The wind and cold also makes it hurt.

My Question is how does anyone hear go out in the cold and wind and not have it make you have an episode?

Like I said I have been off work since the day before Christmas because of the pain and also the cold and wind here.

I want to be able to get back to work if I could just get out of the house and get there and not be in so much pain.

I also have another question, which is the better medicine, I am taking both Gabapentin and Carbamazepine (don't know if I spelled that right). I am taking 2 capsules 3 times a day of the Gabapentin and 2 capsules of Carbamazepine twice a day with 1 in the afternoon if I feel I need it.

If anyone has answers to my questions I would highly grateful.



Hi Sandy, firstly so sorry to hear that you have this horrible illness and welcome to this site. There are many tabs at the top of the page where you will be able to browse and look for many answers to questions you may/will have!
Going out in the cold is very difficult for many of us, I tend to try and stay indoors when it is really cold but if I do have to go out its a case of wrapping your face up well, wear a hat and put a scarfe around your face…don’t worry about looking stupid, it’s far better than the pain!
As for medication, unfortunately it’s trial and error with most people. I was unable to tolerate the carbamazepine and my meds were swapped and changed weekly when I was first diagnosed. Have you been referred to a Neurologist? If not ask your GP to refer you as they tend to be the best ones to oversee any medication regimes!
Hope you manage to get back to work soon and that you soon find some more relief from the pain.
Please feel free to ask any questions you may have
Mandy : )

Hi Sandy,
So sorry you’ve been in such pain, I hope the meds are kicking in and working for you…Carbamazepine/Tegretol is the first med ( usually) given, therapeutic dose is usually found between 400mg -800 mg /day but we’re all different and respond differently. Gabapentin/Neurontin is also a popular med to treat TN.
At the neurologists office, you can expect a full neurological examination. He/she will ask about your TN and symptoms and medications etc they should order an MRI to exclude MS and any abnormalities that could be pressing on your nerve. So a normal MRI is a good thing.
As for going out in the cold, not everyone with TN has cold or wind as a trigger, but those of us who do, use scarves to protect our faces.

Medication can control your pain so that you can get back to work it just takes a little time to find the right med and dose that works for you.

(( hugs )) Mimi

Thank Mimi and Mandy for the response. Yep going out in the wind and cold is very difficult for. To bad I live in the Midwest which has the cold and wind, right now the wind is blowing so hard it is making everything blow around outside. Waiting for the medication to get in my system and really start working. It has given me some relief but not enough to let me get back to work. I go to the Neurologist in a week. Hopefully he or she can get the right dosage for me so that I can get back to work and live somewhat of a normal life again.

Once again thanks for the responses. I really appreciate them


sjjmcgee1961 (Sandy)

Sorry for your pain & feeling lonely & all losses its really hard …
Try lyrica (pregapalin) at bed time then twice per day if needed it may give better results and less side effects & every on is diffrent for me I can not tolerate tegretol & try to stop meds. While remissions

Hope you are pain free … Bless you

Hi Sandy

I went out and bought a snood type hat/scarf as it is very windy where I live too. Windy weather is my worst trigger. Talk to neurologist about meds when you see them. I have managed to go back to work although I still get pain most days. I am on loads of meds but are still working with them to get best results. If this new med they added gives no relief they have advised surgery referral.

Hope you feel better soon.