I developed TN due to head trauma from a motorcycle accident. It’s been 3 months now . I’m from Barbados and I’m on 300mg of Tegretol . My meuro stopped me from going on 400 cause I was getting too dizzy. Now the pins a
Hans
The site was giving trouble … Con’t … Now the pains has started and it’s Christmas and can’t get hold of him… I wanna go on the 400… Ohhhhhh … I also want to say that I’m have a really hard time dealing with this and the possibility of living with this for the rest of my life…
… I’m just sharing , sigh
Hang in there Jimmy ! Try to keep calm . You are not alone.
Thanks
Hi Jimmy, yes, it is a miserable disorder and many of us have gone through the experience that you find yourself in now
. Many of us eventually find effecitive pain control. Any chance you can get to an emergency ward until you speak with your neuro. Also the Dr's usually have an answering service where you can pass on your siituation. Stay in touch
Ohhhh love barbados!
Order the book,
Striking Back
By dr. Ken casey
Learn all you can!
You can get remission off and on
But this TN is not cure-able
For now, get your doctor to order you
Lidocaine cream for face
Or better…lidocaine patches you put on your face!
In the search box above
Put in ‘topical’ for other creams and such
If no lidocaine prescription.
300mg of Tegretol is a very low dose. If it makes you dizzy there are a lot of other medications you can try. It's a matter of trial and error for which drug or treatment works best, but as KC stated there is not a cure, it a matter of finding what works best for you. Keep your faith, try to avoid triggers and be as positive as you can.
Thanks Gail… Neuro wants me on 400 originally … My next visit is on the 17th Jan… Eating (heavy chewing ) is my trigger … So soft foods for me … Or blended … And yes I will be as positive as I can 
thank Gail
Hi kc… Ur invited to BARBADOS …
Will look for the book and the cream
Yes it is horrible Jimmy. I have head and neck trauma. Tegretol made me so dizzy I was falling sometimes. It does get better. I am back on neurontin and it’s helping. I was able to find a topical cream for diabetic neuropathy pain I put on my face and it took the edge off. We get desperate and try whatever works. Hang in there … One day at a time. Sometimes one hour at a time.
Ohhh there is also lidocaine mouthwash!
Let us know what the doctor says!
Hi Gs, I like an hour at a time . I had no pain today but was on edge. And yes Kc … I will post what the doctor says… Can’t wait till Jan 17th
Oops. When I say no pain I mean TN… I had head and neck pain and when it’s a 7 and higher I take morphine when paracetamol is too light … Sigh
Yes, it is a matter of finding what works best for you. I'm still on the low-dose Ultram (tramadol) once a day at bedtime, and occasional ibuprofen. Most of the time I am pain-free as long as I don't touch the right side of my nose or face. I've tried narcotics, which didn't work all that well. I've tried Tegretol. The Tegretol works almost instantly, but within three days I cannot walk, so unless the pain becomes unrelenting even with elevated doses of Ultram, I don't take that. (I have multiple sclerosis from which the TN comes, and that is why the Tegretol affects my already-damaged walking. It is nothing most people have to worry about.)
I tried this and that and sometimes had to try to work through the pain, which I couldn't do, it is too bad. So when I found what works for me, the Ultram, the ibuprofen, and the occasional Tegretol I insisted on that from the doctors even though they wanted to try a few more combinations of things.The last new thing I have tried is lidocaine ointment. Didn't help at all.
Lately I have had to do some distance driving, and I have always been drowsy and had to pull over to sleep. To attempt to prevent this, I would not take Ultram the night before I had to drive. Of course I've started having breakthrough pain. That's another reason I know Ultram works for me.
Gail C said:
300mg of Tegretol is a very low dose. If it makes you dizzy there are a lot of other medications you can try. It's a matter of trial and error for which drug or treatment works best, but as KC stated there is not a cure, it a matter of finding what works best for you. Keep your faith, try to avoid triggers and be as positive as you can.
I'm really blessed to know I encouraged you , take it a day at a time and draw your strength and courage from the Lord. Pray He will provide doctors and the proper medication to help you. I do believe in divine healing but the Lord can use this situation to show our joy and peace even in the midst of a storm in our lives to reach others, I have had so many opportunities with this to pray for the staff at the hospital I've been going to and can't wait for my friends and family to be there for my surgery to share and pray with my neurosurgeon and medical staff that will be around. I will be praying for you and your divine appointments. By the way I at times get negative thoughts as well so I have to try all the more harder on meds to read Gods word and pray It takes discipline but I can do all things through Christ who strengthens me.
Jimmy B said:
Thanks so much ... And my hope is in Christ.. Hearing u say there is a reason for this, I so believe that... Well I have to believe that.... But I'm not perfect and I get negative thoughts .... I will be honest, this has truly made me turn to God and on him I have to depend ...... Also thanks for the verse :)
Hi Show me, thanks for sharing … It warms my heart and comforts me to know I’m really not alone … Barbados is a small island … No groups here… As for driving , I haven’t driven in 3 months and have found myself dependent on people … And I won’t even think of driving when walking itself is a challenge with this dizzynes…
Hi Blessed… Yes u have ::))).
And as we move forward holding each other hands and praying for each other I know it more comfort… Comfort we all need … So now I’m going to pray…
Dear God, we love you and adore you and we worship you. You know our pain and our struggles. I pray Lord that when we get these negative thought that You intervene and remind us of Your wonderful love and that we be confident in your will for us. I pray for all the doctors whom have been given there talents and gifts from you that they will help us and guide us through this as You will have them do. I also thank you Lord for this site. I ask You to bless it and keep it running and spread all over the world to let us reach each other and comfort each other… I pray this in the awesome name of Jesus … Amen
Hi Jimmy B,
As others have mentioned remissions of pain do happen for many and many have found relief through various meds alone or in combination. I thought I’d mention that there is a slow release version of Tegretol ( carbamazepine) that you may find works better. Maybe something to ask your Neuro about?
This also may help with the dizziness…
Sending positive thoughts your way.
Mimi
Hi Mimi … I think the tegretol I’m using is slow release as I take it every 12 hrs … I don’t know much as I’m new to all this … Thanks so much. Will mention it to neuro when I see him ::::)))))
Hi jimmy, to clarify, as an example when I was on 800mg slow release, I took 1-200mg pill in the morning, 1-200mg pill mid day and 2 -200mg pills in the evening…steady slow release throughout the day. Minimal chance of breakthrough pain as the medication was in my system continuously. Taking every 12 hours leaves room for no pain coverage.
I sincerely hope you find a dose that starts working for you. Unfortunately it’s trial and error. In my experience it does take time for your body to adjust and for me the dizziness and initial tiredness went away or was minimal and allowed me to function.
Wishing you the best, Mimi
Ohhhhhhh I understand ::)))) … Yes that sounds so workable … All this I will ask him when I see him… Sry I won’t be seeing till 17th Jan… Till then I have to stick it out … Will keep u posted … I had a sea bath this evening and it was really good … A bit scary with the dizzyness tho … Never know when it will happen … I will keep u posted … Thanks … ((((Hugzzzz))))