I was diagnosed with TN 2 years ago. They gave me a round of Steroids and some Lortabs and sent me on my way, It didn't bother me again until July of this year. Since then I have been in constant pain with random shooting/stabbing pain. They have had me on Prednisone for 2 months now along with Tegretol, then Tregetol CR. They just keep increasing my dose and telling me to be patient. I finally got to see a Neurologist last week. He ordered an MRI to see if I have MS. Is that normal? He also has me weaning off the Tegretol so I can try Trileptal. I have one doctor telling me that pain medication won't help and I will just have to wait until the medication works. I saw a doctor at an urgent care who said that was stupid and if I am in pain, I should take pain medication. She gave me Lortab 10. They halp with the constant pain, but not to shooting pain. I guess my point to all of this is that I feel lost and scared and in pain. I don't know what to do. I know I will do ANYTHING to make this stop. Is it normal for them to tell you to just "wait for the pain to stop"? They obviously don't know what this feels like! Is there truly nothing they can do?
Hi Michelle,
I’m sorry that you’re struggling to get pain relief right now, it can be a difficult dance unfortunately. The different meds take time to build in our systems and reach a therapeutic level, sometimes we need to add combinations of meds.
Sounds like your neuro is looking out for you, it’s very normal to order an MRI as they need to rule out MS or tumors. Changing your med is proactive too, I’ve never been on trileptal but many here are on it, I hear it is well tolerated.
I really hope you start to feel relief soon, thinking of you, Mimi
Ive seen very few here on steroids -- 1st line treatment for the shocking is Trileptal.
If you need pain relief till trileptal is at high enough dose - ask for lidocaine patches for your face
Read allllll that you can on this -- we suggest the book "Striking Back" by Ken Casey - this TN is verrrry rare - but the more YOU know the better your treatment will go !
I have found very little relief with pain medication pills such as migraine pills and Vicodin At the ER I was told I was having retinal migraines and sent me on my way with migraine pills. The dentist told me I needed wisdom teeth out and gave me extra strength Vicodin. Neither of them worked AT ALL!!! I have now been diagnosed (about 2 months) and currently taking 1200mg of Tegretol and still having pain. My neurosurgeon is sending me to a neurologist to discuss adding a second medication along side the Tegretol. Hoping that helps until I can have the MVD next year!!
It does sound like this neurologist is looking out for you. I had my MRI/MRA and they found compression points. I guess sometimes they don't see anything. Keep you head up with a proactive neurologist he will find you relief!!!!!
I have Tn1 and TN2. When I was first diagnosed the Neurologist tried steroids, antiviral, and antibiotic. He was in hopes it was being caused by an infection but...none of that helped. I now take Neurontin and Percocet. I, too, had a neurologist tell me that opiods would not help my pain. Well...they do help very much with the constant ache and burning pain. Illegal use and abuse of pain meds has hurt the people who truly need them. Don't be afraid to ask for what truly helps. This condition is rough enough to deal with.
Has your doctor ever tried you on any of the tricyclic anti depressants in combination with your anti seizure med. They are known to be helpful in treating type 2 pain. Maybe you can ask him the next time you see him. I know when I started Trileptal it did take awhile for it to start working. And we did have to increase it . I am on 1200 mg per day. I hope you get to feeling better soon..:) Min
Michelle, it may be confusion on the part of your Dr. It is hard for us to remember but a lot of Dr’s don’t know a lot about TN and some are only aware of Type I, classic TN. It is true that pain medication does little to help Type I, but anti convulscents often do. Pain medication does help many with Type II. It seems to me that you have a combination of the two types and may need a mix of the two medications. This can only be prescribed by a knowledgable medical professional. They understand the complexities of the situation. Please remember I am not a medical professional, I just recognise some TN stuff from hanging around here. I hope the Trileptal helps you.
We tried Amitriptyline, but it gave me horrible horrible nightmares. I do take Trazodone now. It knocks me out like a light so I can sleep through the pain at night. Sometimes, I even wake up pain free for an hour or two. I treasure those moments. I know the Dr.s don't understand the pain and I am trying to keep that in mind. Sometimes I feel like they look at a 29 year old woman and think I am just trying to get pills. My family doesn't understand why I am so cranky. No one has ever heard of it and think I am crazy for wearing a scarf even when its hot. This is all so overwhelming. I just feel so alone in this battle. Thank you all for responding to me and having this site. It really makes me feel less alone.
-Michelle
Min said:
Has your doctor ever tried you on any of the tricyclic anti depressants in combination with your anti seizure med. They are known to be helpful in treating type 2 pain. Maybe you can ask him the next time you see him. I know when I started Trileptal it did take awhile for it to start working. And we did have to increase it . I am on 1200 mg per day. I hope you get to feeling better soon..:) Min
I take Effexor and my GP was prescribing it for depression at the time and we happened to find out it worked for my pain I was having in the front of my face on my tooth and also for my back teeth as well. It has really helped me greatly, I shall never let them take it away from me. LOL
Hang in there Michelle, it took several visits to the dentist , who treated me for a root canal that i didn't need to a neurosurgeon after 1 month of uncontrollable pain i was finally put on carbotrol., After about almost 3 years of taking pain meds i decided to see another surgeon who recommended surgery. I was willing to go for anything then to live on pain killers for the rest of my life. After the surgery i didn't take the same amount of pills. i was taking up 5 pills a day ....now i am down to just 1 a day and i can live with that, i still have bad days if the barometric pressure is up or if it gets real cold. I have learned to take care of myself. I have learned to look out for warning sign triggers if you will. this all will come in time. Yes , read everything you can about your condition and it will help you out a lot. This website is wonderful. I gather alot of strength and i don't feel alone. I know i will live with TN for the rest of my life. But i also know i will relish the good days and learn to take advantage of my days that i need rest and not to let myself get stressed. I depend on the Lord alot and these people on this website. My family has learned to understand and have learned to be more compassionate. all this will come in time. take care and don't give up hope, Elvira
That does sound rather confusing. I’m sorry your having a rough go with medications. Here’s the deal there is no magic pill that works for all on TN. It may take a bit before you and your doctors find the right medication/s that work for you. You might want to look under the face pain info area (top right hand on your screen), there is a section that goes under all the medications used for TN I believe. As for opioids aka narcotics this can be a touch subject and is a bit of a debate. For some patients these medications can be life saving and for others these medications will not even touch the tn pain. Some doctors will not use these at all for TN while others will. There are also some serious things to think about and weigh on when consdering this kind of treatment option. Tn is not treated by most doctors so you will need to remember this, and if possible find a doctor that has knowledge and specialize in treating TN. If not you will need to find a doctor that is willing to work with you. As always be a patient that proactive in your treatment you will need to read up on tn as much as you can to do so, again the face pain info area can really help you on this. I know it is hard but most of the medications do take time to see if these will work and tiltering up to a theraptic dosage for you. I hope you are able to get relief soon and take care. Hope you have a great day that is pain free.