I am losing my mind I feel like. The tegretol just doesn't seem to work anymore, the pain in my scalp is unbelievable. The burn I feel is so indescribable. Every day I lay in bed praying I don't have to get up so I just continue to lay and lay and lay until I am forced up. I am 22 years old and have just graduated with a degree and I'm supposed to be at the prime of my life. Whether this is atypical trigeminal neuralgia or something else I don't know but the pain is too much for me. I was the happiest kid until all this game about. I think more and more just what would happen if I took myself out of this equation. My family has suffered with me for so long. I am in so much constant pain and am falling into a deep state of depression. I am supposed to go back to the neurologist on Wednesday but for what..? another medication to try, I am so zombied out of my mind from the tegretol I barely know whats going on now. I am losing my job, and my girlfriend, and all my friends I had from college. I am in a very deep and terrible place, and this website has helped tremendously, however it has hurt me as well, seeing so many people not having help from medication really does discourage me. However I should realize that everyone is different. I am just scared I will be that one person who no matter what I try nothing will work and I will be stuck in this pain forever. I need serious prayers. I am not eating anymore and can just feel my body shriveling up.
You are going through so much at an age when most are just mapping out their future. Let not your heart be troubled. Many, many of us find (for the most part) relief. It is a lot of trial and error, unfortunately. Having a GP or neurologist who is on your side and trying to help you is so important.
Many TN2 patients find tricyclic antidepressants helpful. I have recently added nortriptyline and think it is helping but it is a bit soon to be certain. Getting your meds right is really the key to getting your life back to some degree. Please know that for the most part, many of us do get a great deal of relief from our meds and also learn to adjust our lives to limit triggers. Do you post on the main TN forum?
Yes sometimes
You just need to hang in there. We all have felt what you are feeling at one point. I am on Tegretol and I have tried others with it but they did not work. A doctor I work with told me to try a vitamin concoction so now I take a boat load of vitamins at night after dinner. It works though. That and modifying the caffeine and alcohol and sugar intake. All of these add up to how much nerve pain I will have. Do you know your triggers yet? It seemed like I was "zombied out" forever until one day I noticed I could think clearly and feel human again. I take tegretol 200mg XR 3 tabs twice a day. Please hang in there. I thought all of the things you did....but I got control and figured this thing out. You will get there too. Hang in there. Don't let it consume you if you can. You can do it.
Of course you are in my prayers and we do understand what you are going through. Laying down and sleep are the one of ways of getting relief. What works for one of us, does not help the other. I have run the gamut of pills over the years along with injections, ablations, MVD's and Gamma Knife. All losers. I am now on Vimpat-rather new and costly--but-- for me it controls the pain. Also Lydocain patches over the scar, neck tendons, and muscles that were cut in so many botched surgeries. I also am on Vicodone and anti depressants--a very mild one. Each of us has to travel alone. But we are all together in this journey. You mentioned prayers-everyone here will pray for you and each other. You may also want to see someone about the depression. Do you have a right to be depressed- dern right. But the depression is situational--That means your situation causes it--You are not crazy-you are sick and tired of the pain. Keep at it--be your own advocate- do not be victim of poor treatment. Insist on help or another opinion. Keep track of every med you have been on and the side effects. Don't expect someone else to do it for you. Stay on line and reach out to those who understand and are in the same boat with you. We will do the bailing-your job is to keep working at it. All of us are learing to deal with this. You can too. Remember you are loved. Stop to remind yourself and love yourself. You have a condition-you are not defined by it. All the very best to you-please keep in touch. --You are going to learn to control this-not let it control you.
- Make sure you find a doctor who believes you & is willing to be your advocate. Many are well-meaning, but I’ll-informed about TN & facial pain. A good neurologist or pain specialist can be a godsend (the latter are often anesthesiologists).
- Do some research, if you can. The book Striking Back is a wealth of information (offered by TNA: fpa-support.org). This site is also a great resource.
- There are many people out here with very similar stories… depressed, unremitting pain, & even suicidal… who have found some relief. I am one of them. I quit eating, (hurt too much), & thought that was how I was going to die. This site & people here helped me keep going.
- There is a group on this site for younger patients, that may provide some social support for you.
- Please, do NOT give up!! There is help for most. It may be the right meds, it may be surgery, it may be a nerve stimulator. It’s different for different people. Hang in there!! Often, a tiny bit of hope is just enough to keep you on the planet until you find what will help. Please please hang on.
hillsdale. don't dispair. your situation will change with the right treatment.
We all feel your pain with you. So totally horrific and debilitating. You are not alone. Believe me.
You will find the right solution. Surround yourself with the right doctors. Don't' let anyone tell you that
you cannot get through this downside. You will!!!!
Can you please ask your doctor about Lyrica instead of Tegretol? Also ask him about if is desirable to have one of the SNRI antidepressants family like Cymbalta? This family is working in parallel for both of nerve pain and depression as well.
I have tried those medicines and definitely I am now better than before ..
I can relate to your feelings, I've been where you are and trust me with the right medications u will be able to get out of bed and live your life. You have to remember a lot of people who are not getting relief or are in despair often turn to this website like I did when my ATN first started. But there are also a lot of people who do get relief and are usually busy living their lives and have moved on, so while it can be a bit depressing to read about other peoples situations keep that in mind.
I really recommend when you see your neurologist to ask about tricyclic antidepressants. I have found tremendous relief and know others here with ATN who have found the same. I have been relatively free of those intense scalp, forehead and face burning and pain I had and Ive done things that i never ever thought I would be able to do again. Hang in there and try to keep ur spirits up while you find your right combination of meds. It takes time and there are so many you can try. Unfortunately our road ahead is a really tough one but the support here is really great. Feel free to message any time and keep us updated on your appointment.
I know this is difficult. Try not to despair. I was diagnosed only four months ago and have already found a lot of relief in medication and now I'm looking into adding alternative therapies. There are many, many combinations of things to try. You most definitely are not alone. Find strength in those who have gone before you and who continue to trudge along the path searching for answers. I also feel "zombined" out by Trileptal but it has offered the most relief for me. Everyone tolerates medication differently. I'm also looking into upper cervical adjustments and possibly acupuncture. I'm taking B-12 everyday and reading books on meditation. The search for answers keeps me going. Remember that it's only natural to feel depressed when the body starts to dysfunction in an unexpected way. There is a long list of combinations of therapies you can try. Don't give up until you've exhausted every single one - which would take a lifetime. So basically, don't give up! Keep posting, keep sharing and keep hope. You're not alone.
Tamzee what antidepressant has helped you the most? Also, are you relatively completely pain free with it? Do you take it with any other medications? Sorry for so many questions but being so new to this I am just trying to learn things, I had no idea tricyclic antidepressants have helped so many people with this condition.
tamzee said:
I can relate to your feelings, I've been where you are and trust me with the right medications u will be able to get out of bed and live your life. You have to remember a lot of people who are not getting relief or are in despair often turn to this website like I did when my ATN first started. But there are also a lot of people who do get relief and are usually busy living their lives and have moved on, so while it can be a bit depressing to read about other peoples situations keep that in mind.
I really recommend when you see your neurologist to ask about tricyclic antidepressants. I have found tremendous relief and know others here with ATN who have found the same. I have been relatively free of those intense scalp, forehead and face burning and pain I had and Ive done things that i never ever thought I would be able to do again. Hang in there and try to keep ur spirits up while you find your right combination of meds. It takes time and there are so many you can try. Unfortunately our road ahead is a really tough one but the support here is really great. Feel free to message any time and keep us updated on your appointment.
I will surely ask about Cymbalta. Thank you for your words and your help.
PainFighter said:
Can you please ask your doctor about Lyrica instead of Tegretol? Also ask him about if is desirable to have one of the SNRI antidepressants family like Cymbalta? This family is working in parallel for both of nerve pain and depression as well.
I have tried those medicines and definitely I am now better than before ..
Meg thank you for your kind words and your encouragement. I know that some where some day I will find the medication combination that will take this pain away. I am just trying to stay positive and not try and get to down on myself. What medications are you on that have helped you the most?
Meg said:
I know this is difficult. Try not to despair. I was diagnosed only four months ago and have already found a lot of relief in medication and now I'm looking into adding alternative therapies. There are many, many combinations of things to try. You most definitely are not alone. Find strength in those who have gone before you and who continue to trudge along the path searching for answers. I also feel "zombined" out by Trileptal but it has offered the most relief for me. Everyone tolerates medication differently. I'm also looking into upper cervical adjustments and possibly acupuncture. I'm taking B-12 everyday and reading books on meditation. The search for answers keeps me going. Remember that it's only natural to feel depressed when the body starts to dysfunction in an unexpected way. There is a long list of combinations of therapies you can try. Don't give up until you've exhausted every single one - which would take a lifetime. So basically, don't give up! Keep posting, keep sharing and keep hope. You're not alone.
Thank you for your kind words. My cup runneth over with encouraging replies like this one.
Pontoosuc said:
hillsdale. don't dispair. your situation will change with the right treatment.
We all feel your pain with you. So totally horrific and debilitating. You are not alone. Believe me.
You will find the right solution. Surround yourself with the right doctors. Don't' let anyone tell you that
you cannot get through this downside. You will!!!!
Thank you for your kind words. It is just tough for me sometimes because I have been very blessed with being healthy for nearly my entire life up to this point. So, it is just tough for me to come to terms that I have a condition that more than likely will hang around with me for the rest of my life. If I could just get on the right medication to control the burning in my scalp. It is terrible as it runs from about the start of my hairline all the to nearly the midline of my head (just behind my ear). Just looking for relief is tough.
galli said:
Of course you are in my prayers and we do understand what you are going through. Laying down and sleep are the one of ways of getting relief. What works for one of us, does not help the other. I have run the gamut of pills over the years along with injections, ablations, MVD's and Gamma Knife. All losers. I am now on Vimpat-rather new and costly--but-- for me it controls the pain. Also Lydocain patches over the scar, neck tendons, and muscles that were cut in so many botched surgeries. I also am on Vicodone and anti depressants--a very mild one. Each of us has to travel alone. But we are all together in this journey. You mentioned prayers-everyone here will pray for you and each other. You may also want to see someone about the depression. Do you have a right to be depressed- dern right. But the depression is situational--That means your situation causes it--You are not crazy-you are sick and tired of the pain. Keep at it--be your own advocate- do not be victim of poor treatment. Insist on help or another opinion. Keep track of every med you have been on and the side effects. Don't expect someone else to do it for you. Stay on line and reach out to those who understand and are in the same boat with you. We will do the bailing-your job is to keep working at it. All of us are learing to deal with this. You can too. Remember you are loved. Stop to remind yourself and love yourself. You have a condition-you are not defined by it. All the very best to you-please keep in touch. --You are going to learn to control this-not let it control you.
amitriptyline and nortriptyline are two tricyclic antidepressants that seem to help many people with the constant burning pain. For reasons we don't fully understand, they help block the neurogenic pain pathways.
mrl
Its so normal to be asking questions, they never stop really two years later and I still have so many! In my case, I was admitted to the hospital for pain control and during the week I was there, my neurologist started me on a tricyclic antidepressant called Anafranil and neurontin. She didn't really know what to do with me as she hadnt seen such a case so anafranil is not commonly prescribed for facial pain, I haven't met anyone here who has taken it but for some reason it worked for me. It helps with the depression too. Ask your doctor about amitryptaline or cymbalta which are newer meds. There are many others you can try too so don't lose hope. On a scale of 1-10 now I am usually a 2-3 which is amazing and its worked for 2 years so far. I graduated law school, travelled, started working, when it started I never imagined I would be able to do these things. So anything is possible!
hillsdale15 said:
Tamzee what antidepressant has helped you the most? Also, are you relatively completely pain free with it? Do you take it with any other medications? Sorry for so many questions but being so new to this I am just trying to learn things, I had no idea tricyclic antidepressants have helped so many people with this condition.
tamzee said:I can relate to your feelings, I've been where you are and trust me with the right medications u will be able to get out of bed and live your life. You have to remember a lot of people who are not getting relief or are in despair often turn to this website like I did when my ATN first started. But there are also a lot of people who do get relief and are usually busy living their lives and have moved on, so while it can be a bit depressing to read about other peoples situations keep that in mind.
I really recommend when you see your neurologist to ask about tricyclic antidepressants. I have found tremendous relief and know others here with ATN who have found the same. I have been relatively free of those intense scalp, forehead and face burning and pain I had and Ive done things that i never ever thought I would be able to do again. Hang in there and try to keep ur spirits up while you find your right combination of meds. It takes time and there are so many you can try. Unfortunately our road ahead is a really tough one but the support here is really great. Feel free to message any time and keep us updated on your appointment.
I'm taking Trileptal, Lamictal and Prozac. The prozac is just for depression. I've heard that the tricyclic antidepressants help a lot of people with ATN and I did try it but only for a couple of weeks. I couldn't tolerate it because it made me horribly bloated. Everyone is different though. I would suggest trying anything and everything possible until you find the best combination.
Write down all of your questions and be sure your doctor takes the time to listen and explain your options.
This is a little unusual but I also read that rubbing hot pepper cream (capsacin) on the burning areas help deplete the nerve signals. I did this for about 10 days and it actually really helped. Also, when it was burning really bad, I would put a microwavable heating pad on my face. It seems counter-intuitive but the moist heat really soothes the burning. It's only a momentary relief but it helped when I was in so much pain I was in tears.
Keep us posted on how it's going! You'll be in my thoughts and prayers.
hillsdale15 said:
Meg thank you for your kind words and your encouragement. I know that some where some day I will find the medication combination that will take this pain away. I am just trying to stay positive and not try and get to down on myself. What medications are you on that have helped you the most?
Meg said:I know this is difficult. Try not to despair. I was diagnosed only four months ago and have already found a lot of relief in medication and now I'm looking into adding alternative therapies. There are many, many combinations of things to try. You most definitely are not alone. Find strength in those who have gone before you and who continue to trudge along the path searching for answers. I also feel "zombined" out by Trileptal but it has offered the most relief for me. Everyone tolerates medication differently. I'm also looking into upper cervical adjustments and possibly acupuncture. I'm taking B-12 everyday and reading books on meditation. The search for answers keeps me going. Remember that it's only natural to feel depressed when the body starts to dysfunction in an unexpected way. There is a long list of combinations of therapies you can try. Don't give up until you've exhausted every single one - which would take a lifetime. So basically, don't give up! Keep posting, keep sharing and keep hope. You're not alone.
Meg, why do you seem to try stuff and then quit it in a very short period of time. For me, my pain is only in my scalp. I have yet to find somebody on this board with their pain being exclusively in their scalp. Have you heard of anyone with pain in the scalp?
Meg said:
I’m taking Trileptal, Lamictal and Prozac. The prozac is just for depression. I’ve heard that the tricyclic antidepressants help a lot of people with ATN and I did try it but only for a couple of weeks. I couldn’t tolerate it because it made me horribly bloated. Everyone is different though. I would suggest trying anything and everything possible until you find the best combination.
Write down all of your questions and be sure your doctor takes the time to listen and explain your options.
This is a little unusual but I also read that rubbing hot pepper cream (capsacin) on the burning areas help deplete the nerve signals. I did this for about 10 days and it actually really helped. Also, when it was burning really bad, I would put a microwavable heating pad on my face. It seems counter-intuitive but the moist heat really soothes the burning. It’s only a momentary relief but it helped when I was in so much pain I was in tears.
Keep us posted on how it’s going! You’ll be in my thoughts and prayers.
hillsdale15 said:Meg thank you for your kind words and your encouragement. I know that some where some day I will find the medication combination that will take this pain away. I am just trying to stay positive and not try and get to down on myself. What medications are you on that have helped you the most?
Meg said:I know this is difficult. Try not to despair. I was diagnosed only four months ago and have already found a lot of relief in medication and now I’m looking into adding alternative therapies. There are many, many combinations of things to try. You most definitely are not alone. Find strength in those who have gone before you and who continue to trudge along the path searching for answers. I also feel “zombined” out by Trileptal but it has offered the most relief for me. Everyone tolerates medication differently. I’m also looking into upper cervical adjustments and possibly acupuncture. I’m taking B-12 everyday and reading books on meditation. The search for answers keeps me going. Remember that it’s only natural to feel depressed when the body starts to dysfunction in an unexpected way. There is a long list of combinations of therapies you can try. Don’t give up until you’ve exhausted every single one - which would take a lifetime. So basically, don’t give up! Keep posting, keep sharing and keep hope. You’re not alone.
Hi Hillsdale,
I quit doing the capsacin cream because after about 10 days, the pain decreased a lot and I wanted to see if the pain level would stay down without it. So far, it's stayed down. The cream makes my skin burn a lot before relief comes (about 2 hours of pain to get relief). I didn't want to have to do that forever. Right now, my pain is pretty manageable but I take it day by day because it does flare up. That's why I'm still searching for something that will work long term. I had to quit the tricyclic because it causes weight gain and made me bloated. I'm only 5'1" so 5-10 lbs is a lot for me.
I too have the pain on my scalp (right side only) but it's also on my right temple and on my right eyelid. It seems to be in different spots for different people but as far as I can tell, it's from the same nerve (trigeminal). I would definitely ask your doctor though to be sure that's what it is. My doctor seemed confident that I have ATN. There just is no other explanation.
hillsdale15 said:
Meg, why do you seem to try stuff and then quit it in a very short period of time. For me, my pain is only in my scalp. I have yet to find somebody on this board with their pain being exclusively in their scalp. Have you heard of anyone with pain in the scalp?
Meg said:I'm taking Trileptal, Lamictal and Prozac. The prozac is just for depression. I've heard that the tricyclic antidepressants help a lot of people with ATN and I did try it but only for a couple of weeks. I couldn't tolerate it because it made me horribly bloated. Everyone is different though. I would suggest trying anything and everything possible until you find the best combination.
Write down all of your questions and be sure your doctor takes the time to listen and explain your options.
This is a little unusual but I also read that rubbing hot pepper cream (capsacin) on the burning areas help deplete the nerve signals. I did this for about 10 days and it actually really helped. Also, when it was burning really bad, I would put a microwavable heating pad on my face. It seems counter-intuitive but the moist heat really soothes the burning. It's only a momentary relief but it helped when I was in so much pain I was in tears.
Keep us posted on how it's going! You'll be in my thoughts and prayers.
hillsdale15 said:Meg thank you for your kind words and your encouragement. I know that some where some day I will find the medication combination that will take this pain away. I am just trying to stay positive and not try and get to down on myself. What medications are you on that have helped you the most?
Meg said:I know this is difficult. Try not to despair. I was diagnosed only four months ago and have already found a lot of relief in medication and now I'm looking into adding alternative therapies. There are many, many combinations of things to try. You most definitely are not alone. Find strength in those who have gone before you and who continue to trudge along the path searching for answers. I also feel "zombined" out by Trileptal but it has offered the most relief for me. Everyone tolerates medication differently. I'm also looking into upper cervical adjustments and possibly acupuncture. I'm taking B-12 everyday and reading books on meditation. The search for answers keeps me going. Remember that it's only natural to feel depressed when the body starts to dysfunction in an unexpected way. There is a long list of combinations of therapies you can try. Don't give up until you've exhausted every single one - which would take a lifetime. So basically, don't give up! Keep posting, keep sharing and keep hope. You're not alone.