I have been on this website for almost two days now, and I can say it has honestly helped some and also it has hurt some as well. I am not sure whether I have regular trigeminal neuralgia or atypical trigeminal neuralgia as the pain is all in my scalp ranging from the side of my head to even the top left side of my head. I didn't even know the trigeminal nerve had a branch that even sent nerve endings into the scalp, but let me tell you I do now. The pain I have is like an intense deep burning pain, and it can almost be described as having a medicated rub like Icey-hot on my head at all times. I have had serious bad thoughts because of reading some comments on here saying how they have dealt with this terrible disease for years and I have been dealing with it for less than two months and I sometimes feel like I can't go another day with it. Yesterday was my first day starting tegretol and I am starting with 200 mg once a day and will increase dosage if effectiveness is not shown within 3-5 days. My neurologist is very nice and I even got emotional in her office when I described the pain, she was very caring and understand I just don't know how experienced she is with this disease. but I am trusting her. I am trying to complete a graduates degree while dealing with this awful pain and it is very tough. I am praying that the tegretol helps but honestly I find myself already convincing myself it will not before I have even really given it a chance. I guess that is me focussing on some of the non-success stories on here with that medication instead of focussing on the actual success stories, please pray for me as I go through this new medication and this disease at such a young age, I am 22 years old.
I’m sorry that you’re going through this. I get burning scalp sometimes and I know that it’s awful. I’m not on any meds yet and I hope yours works for you. Hugs.
Hillsdale, welcome to LwTN,
I can understand how this can all be overwhelming as well as discouraging…
BUT you need to remember that what you are going through is YOUR journey, sure we all share similarities and there’s a wealth of information as well as support here BUT many of our members, who’s TN is in remission or controlled with meds no longer post here, they move on, enjoy life and stop by from time to time to check in.
We’re VERY lucky in that some who have experienced successful procedures, remissions or are managed well with meds still post here frequently. 
Your journey is unique to you, try to inform yourself as much as possible, but don’t look too far ahead in the future…
Your primary focus, finding relief for the pain initially.
Give the Tegretol a good chance, I was diagnosed at 29, young too…I found Tegretol slow release to be more effective for me. Therapeutic dosage varies, usually starting around 400mg ( my therapeutic dose was 800 mg eventually) we’re all different.
It takes time for our bodies to adjust to these anti-convulsant medications, so expect drowsiness, nausea, feeling like a zombie.( read your drug insert)
It can take weeks, so don’t give up, give the med a good chance.
You can go into remissions… I had a 10 year remission!! There’s some encouraging news!! ; )
Try really hard to think positively, I’m a firm believer that our thoughts affect us a lot more than we give them credit for…so positive, positive affirmations as much as possible!
Otherwise trust your doctor, but inform yourself as well, ask questions and advocate for yourself.
I will pray and send you positive vibes that you experience relief soon.
Mimi
You are not mentally unstable, you are just scared. I felt the same way and there are times when I have good days, I am happy to have relief. At other times I get so depressed I just can't cope. I am sorry you are going through this but remember you are not alone, there are wonderful people on this site that can help you cope. I am so glad I found this site. I was just diagnosed recently so I am new to all of this myself.
So sorry you are dealing with this and at such a young age. I was 29 when I was first diagnosed.
I share your areas of pain and from your description it sounds like ATN or Type 2 to me. Please don't get discouraged. You are in a vulnerable place right now and it is easy to get overwhelmed reading these forums.
Stress and anxiety really exacerbate TN so just be mindful of that. I know that is easier said then done but you need to focus on giving the medication a chance to kick in. I see some positives in your story already. Two things--you were lucky to be diagnosed so quickly and you have a Dr. that is compassionate, knowledgeable and wants to help you. Those may seem like simple things but they are not easily attained with this.
Each one of us is so different with our symptoms, types and intensities of pain, response to medication and whether or not TN progresses. There are remissions (I had one for seven years!). There are lots of people that have success with medication and procedures. And many of us lead good, full and productive lives :) You have got to stay positive! You can do this.
One positive is that I have found for breakthrough pain, when the pain is almost unbearable, my neurologist prescribed me hydrocodone pills, and just one usually takes the pain away to an extent. I have been on the 200 mg slow release tegretol once a day for almost three days now and have not seen much help yet. However, with other people saying it needs time to get into your system and also therapeutic doses can be different for other people that does give me hope. Having the pain pills for when the pain is at its worst does actually help a lot. Any and all comments on tegretol and how long it took for it to start working for the ones who have tried it are very welcomed. I am very young and very uneducated on medicine and a disease like this and any explanations will help. My neurologist has said that the tegretol should work, my one question is the only time I have had full relief from this terrible disease is when I was on a steroid pack (one that starts you on a high dose and slowly tapers off) and gabapentin 300 mg 3x a day. I did not have an attack for probably 4-5 days. However, once the pack ran out I was only on the gabapentin I could slowly feel the pain creeping back in. Has anybody had any success with oral steroids for this disease? maybe this is what could take the pain away from me.
Hi hillsdale. I started with tegretol as well but had better results with triliptal and less side effects. From your description is sounds like you have TN2. I have TN1. Have you had a high contrast MRI? If you did was anything significant found? I was 26 when I was diagnosed. I was trying to complete my RN a few yrs after my diagnosis and I was also pain free with medication. The pain came back and my grades suffered and I had to withdraw from my classes. This was just a little over a year ago and I have since had surgery. I have not re-enrolled in school yet bc I want to be sure this monster is gone. So far no pain. Steroids are very hard on the body And are typically not prescribed for long time use. Once you reach a therapeutic level with your medication you should find some relief. If you have no relief at all its a possibility that you have the wrong diagnosis. I had relief after 4 days on tegretol but the pain came back 2 weeks later and I was switched to triliptal.
I did have an MRI with contrast and nothing significant was found. All was said to be normal. Thank you for your post and response on my questions about tegretol. I will slowly up the dosage if I find no relief soon. I’m just glad it was not a tumor on my brain or any bleeding. It was very scary at first. Hopefully the tegretol will start to take effect soon. What dosage did you use Anne?
I haven't been given steroids so I don't know anything about them. I do know that I have talked with many people that they do help. I am going to contradict what Anne said but if Tegretol doesn't work you may have more luck with a tricyclic antidepressant...I am on Nortriptyline. They are often very effective for Type 2 pain. A lot of Drs do rely on a positive response to Tegretol to back up diagnosis. It doesn't work for everyone though.
hillsdale15 said:
One positive is that I have found for breakthrough pain, when the pain is almost unbearable, my neurologist prescribed me hydrocodone pills, and just one usually takes the pain away to an extent. I have been on the 200 mg slow release tegretol once a day for almost three days now and have not seen much help yet. However, with other people saying it needs time to get into your system and also therapeutic doses can be different for other people that does give me hope. Having the pain pills for when the pain is at its worst does actually help a lot. Any and all comments on tegretol and how long it took for it to start working for the ones who have tried it are very welcomed. I am very young and very uneducated on medicine and a disease like this and any explanations will help. My neurologist has said that the tegretol should work, my one question is the only time I have had full relief from this terrible disease is when I was on a steroid pack (one that starts you on a high dose and slowly tapers off) and gabapentin 300 mg 3x a day. I did not have an attack for probably 4-5 days. However, once the pack ran out I was only on the gabapentin I could slowly feel the pain creeping back in. Has anybody had any success with oral steroids for this disease? maybe this is what could take the pain away from me.
Well I am just wanting to update my situation in this journey. I went to a massage therapist today, one that is very well respected in my community and she said she believes I am gritting my teeth, she massaged the jaw muscles and I also have tender sore spots in all the positions that coincide with grinding your teeth, according to her.I have upped my dosage of tegretol from 200mg once a day to 100mg 3x a day. This is the first day I will be doing this and I have not had the excruciating break through pain that I have had for the past 4 days yet today. So, maybe this means the tegretol is working to some extent. I am solely wishing and praying that it is. Please continue to go back and forth with me as I really do value each and every comment on this thread because it does really help me cope.
I was diagnosed 45 days before I was supposed to sit for the bar exam. I had to withdraw. I was devasted. Six months later I sat fornthe bar and passed. I went into remission for several years. I am out of remission now but I was wiser to what was happening with my body and got on meds sooner. I have tough, emotional days… BUT I am a successful attorney and able to manage all that is required of me with very purposeful self care. You will come through this and can do this.
PS I started with tegretol and and it did not work for me. Trileptal and gabapentin worked best. Also my MRI looked okay except for calcified tissue next to the nerve. I have atypical TN.
hi hillsdale 15
i am so sorry you are feeling so defeated by this disease. it is scary. i often wonder how this is my life, quite a surreal thought. give the teg some time. i take 400 mg slow release twice a day. slow release works better for me as i don’t have the hi and low effects. there is hope. for many of us hope is in our medication. i take carbamazepine, also known as tegretol, and baclofen. the book Striking Back has a great med section. i like to take it with me to my appts so i can better understand what the doc is saying.
remember you are not alone and do not have to do this alone. educate yourself on this disease and figure out to live with it. you can do this. life may look different but it is still live.
i wish you all the best. hugs my friend.