Hi all I have ionly recently learnt I have this condition and I’m struggling a lot every day scared it will strike , I still don’t know what my triggers are yet and so scared , I have a 4yr old boy and when I have an attack I can’t look after him or even speak please can someone help me ? I just need to know it will ease off the pain is unbearable .
I don't have much info to offer you, due to I have mostly TN2 which is a little different. The first thing I would suggest is seeing a dr and ask to be put on some meds, if your not already on them. However, while taking care of a child, you might need some help with him, while starting the meds, there will be some time needed for adjustment. It most likely won't be easy at first, but more side effects will go away and I do believe the meds will help.
When is comes to triggers, I would avoid chewing on the side of your pain. Avoid cold drinks and sour things . . those are the triggers I try most to avoid.
I hope you start to feel better, good luck to you and keep us posted.
Yes Gemma, when a good Dr or neuro finds a working medication for you it WILL ease off. Maybe not all the time but it should improve. With good medical care, a near normal life may be possible with Type I. I wish you relief soon.
You may also want to explore MVD surgery. That could be a good option for a young person with good health.
Thank you so much for you quick replies makes me feel better to know there are others with this horrible disorder I’m trying not to be alone at the moment so if I have an attack of the pain someone is there for my little boy , at the moment I’m on carbamazepine 200g and tegretol and ibuprofen for the pain , I’ve been told to steadily increase the carbamezine did these meds help anyone ? Or any tips for handling the pain when it comes ?
Carbamzepine stopped my attacks at 600mg a day. You may need more as were all different. At 600mgs It made my pain manageable and then I went into remission (remission is possible for us all) and have been pain free for 20 months. I also crept up slowly as it helps prevent the side effects which i hear can be horrible. xx
Hi Elstep ! Thanks for that I’m willing to try anything to combat the pain and your story does give me hope ! How soon after you started the carbamazepine did you feel the benefits ? Xx
For immediate relief have ANY of your doctors call in prescription today of Lidocaine Patches -- they really take the pain down several notches for many- and last for 12 HOURS!!!
Once you are able- read our "bible" on here "Striking Back" by Dr. Ken Casey -- many many many treatment options and the most resourceful book out there on us! Get it from library - Amazon - anywhere you can!
Keep Posting!
I was very lucky as it was only a couple of weeks before the electric shocks stopped in my face, and just had them along the jaw and then it stopped all together. I then slowly came down and came off the meds all together although lots of people think it is best to stay on them. I did develop TN2 or Neuropathy not sure which it was, which stayed with me for a year, Ampriptyline helped with this. This felt like my face ached especially at night, even now it feels a lot more sensitive then the other side, but otherwise I am ok. If you had told me this a year ago when I was full of fear I would have been over the moon, so I know how you feel. xxx
Your meds should help control the pain. My relief was within HOURS, but some people it takes 2-3 weeks for them to feel better. I have had to increase 3 times since August 28 when I was diagnosed. I am now on 1200mg a day and I still feel some twinges sometimes. Praying you get relief soon. (((((((HUGS))))))))
I too was recently diagnosed with TN and am on Tegretol. I started with 100mg 2x a day and then increased it to 200 mg 2x a day, but that caused me to be too nauseaous, so I decreased it to 100mg again. This is only my 3rd day on medication- I am still experiencing pain but not as often as I had been. I am hopeful the meds will work. I also have two kids ages 7 and 11 and thankfully we live with my mom because I haven't been able to parent them since the TN started. The pain is so bad! Wondering how long I should give Tegretol before I call doctor and ask for something else. Good luck to you and hope you feel relief soon.
The pain is terrible, I know how that feels. Unbareable, completely in fear throughout the day. It’s a tough thing, and the best thing to do is stay on top of your appointments with your doctor. They should prescribe medicine that can help. Try different things to soothe your pain, though. Maybe a heating pad? Hot bath if you can? Massage your face? Try to relax, too. I noticed my fear stresses me out really bad, and that increased my pain and consistency of pain. Stay strong, you have a lot going for you. 
Tanya, some medicine can take a few weeks to work. If you can stand the naseua, I suggest that you take the dose your doctor prescribes. I was on Tegretol and had naseua, but after I stuck with it a few days, that stopped. Good luck to you.
There are also slow release meds which may help with side effects x
Hi all ! Thanks so mich for all these comments they’re really helping me mentally to cope . I have had a pain free day yesterday and hoping its because the carbermizole has got into my system ? But I’m still having minor twinges every now and then , do you think this is an attack which is now being calmed by the meds or just a twinge ? Any suggestions ! Xx
That was supposed to say carbimarpine or what ever its called lol !!
I am sorry you also have what has changed all of our lives. There are many different options that can make it easier to live with. Others have mentioned drugs, but speak to your specialist to know what is best for you.
I have a 5 year old and a 3 year old so I can appreciate where you are coming from in regards to your fears. One thing I can say is it does get easier to manage.
Read,Read,Read… Get to understand the beast that is TN (GN in my case) so that you have information before going to the Dr’s…
My number one piece of advice is to write things down. Your symptoms, triggers, fears , questions before your visits. I found that I would forget to ask/mention something every visit…
I finally wrote out a little story about it, that I could give to each Dr to read. This way I didn’t have to repeat it to each and every specialist and believe me, there can be a lot of them.
I am glad you found us. You will find support and make friends who understand where you are coming from.
Smash
Hi! I have the same fear as you. My TN diagnosis is very recent & I'm so scared that I'll have an attack. It's not fun, is it? Living w/this fear or the condition. You definitely have my sympathies. I have not found what triggers the pain; you are right it is unbearable. I am on a steroid as well as anti seizure medicine. Plus I have pain meds. What has the dr told you to do?
I’ve been put on the seizure meds too gradually uping the dose every 2 or. 3 days and pain killers that’s about it at the moment I’ve had a dull ache in my mouth all day today and sooo sick from the meds .
Yes I do think the meds are calming it now. So keep taking it as prescribed and if you ever have a bad attack while on the meds, go back to the doc for an increase.
Gemma chivers said:
Hi all ! Thanks so mich for all these comments they're really helping me mentally to cope . I have had a pain free day yesterday and hoping its because the carbermizole has got into my system ? But I'm still having minor twinges every now and then , do you think this is an attack which is now being calmed by the meds or just a twinge ? Any suggestions ! Xx