Newly Diagnosed

I'm newly diagnosed with TN type 2 and it's debilitating and frustrating with the unrelenting burning. I've considered suicide more than once and keep wondering how long I can live with the pain before trying to end it. Anyone else ever feel this way? If so, what did you do?

I'm currently on prozac, lamictal and getting ready to start oxcarbazepine. Please message me with any suggestions. Thank you!

I'm so sorry you got this stupid ailment. Try Trileptal if you can. It has fewer side effects.

Meg-
I am so sorry to hear about your diagnosis. And I think I can speak for many of us in this forum to say we’ve all been there… And yes, that means the suicidal thoughts, too. When I first start seeking therapies, I went to an acupuncturist who told me I was his second patient with the disorder. The other patient said if acupuncture couldn’t help him, then he was going home to his .38 revolver… And I ssid I completely understood. It is a horrible disease. The one good thing is that you’ve found us on this site, and the resources here provide a wealth of information. Don’t give up hope! It was months & months before I got a diagnosis, and many more months before I found an effective treatment that made it more manageable. But it did happen. So do your research, read what other people here have done & tried, & when you get discouraged… reach out for help. There is hope. Hang in there, my dear.

Meds in this disorder are largely a trial-and-observe process, Meg. If Trileptal isn't helpful, then many neurologists would suggest that you be tried on a low dose of Amitriptyline, Nortriptyline, or one of the other 8-10 tricyclic antidepressant meds. This class of meds is frequently used and is recognized as helpful in neuropathies by organizations such as the International Association for the Study of Pain.

Go in Peace and Power

Red

Yes, I agree with the others that it really does take some time to figure out what works for you. I've been diagnosed with type 2 (also with unrelenting burning) and plain old Carbamazepine has worked out best for me. I also take Norco four times a day. I started the Norco (similar to Vicodin) plus Butrans patch before they figured out what was wrong with me. The Norco and Butrans patch should probably should be avoided since they are addictive. I also take a beta blocker since being in constant pain has given me high blood pressure. Last summer I was completely overwhelmed by pain but luckily it has improved some after adding the Carbamazepine to my medication list. For some reason Trileptal did not work near as well for me. Gabapentin often helps people with type 2 and chronic burning pain (although it did not help me).I'm going to be trying Botox soon. I've also had some improvement from classical homeopathic medicine. As far as suicide goes, I think it's important to remember it would be devastating for your friends/ and or family. Things will get better when you find the right medication(s). I find that staying busy helps me although it can be a real challenge to do this when my pain level is very high. Hope you are able to feel better and get your medications situated soon!

Yes, I agree with the others that it really does take some time to figure out what works for you. I've been diagnosed with type 2 (also with unrelenting burning) and plain old Carbamazepine has worked out best for me. I also take Norco four times a day. I started the Norco (similar to Vicodin) plus Butrans patch before they figured out what was wrong with me. The Norco and Butrans patch should probably should be avoided since they are addictive. I also take a beta blocker since being in constant pain has given me high blood pressure. Last summer I was completely overwhelmed by pain but luckily it has improved some after adding the Carbamazepine to my medication list. For some reason Trileptal did not work near as well for me. Gabapentin often helps people with type 2 and chronic burning pain (although it did not help me).I'm going to be trying Botox soon. I've also had some improvement from classical homeopathic medicine. As far as suicide goes, I think it's important to remember it would be devastating for your friends/ and or family. Things will get better when you find the right medication(s). I find that staying busy helps me although it can be a real challenge to do this when my pain level is very high. Hope you are able to feel better and get your medications situated soon!

I know exactly how you feel. I have TN type 2 as well. I recently went through 2 months of straight episodes that lasted almost 24 hrs a day. But during those two months I watched my oldest son graduate basic training, I got hugs and kisses and I loves you’d from my other 2 sons. Even though I woke up and went to bed in tears and in pain I know that if I were to choose to end it all I would miss the in between. Sometimes I have to fight to stay alive but it’s worth the fight. I think if I would’ve ended it when it was really bad (and it was) I would’ve missed so much. I live sometimes minute by minute. I would find myself thankful and blessed for having only 45 minutes of pain rather than an hour or my body letting me sleep a whole 30 minutes. I wake up each day scared of what kind of pain I’ll have but I wake up each day blessed that I have another day.
I use heat pads on my face, the sand ones cause the gel explodes. That seems to help me a whole lot.

Dear Meg,

Very sorry that you are suffering so much.

I have had type II TN for many years with increasing pain for increasing hours in the day.

Besides medications which are decreasingly effective, I have found practicing Mindfulness most beneficial!

The paperback book I have found most beneficial by far is The practicasl neuroscience of Budda's Brain happiness, love and wisdom by Rick Hanson, PH.D. with Richard Mendius, PH.D..

Mindfulness has helped me be at peace with the extreme pain.

Sincerely Bill I.

Meg,

I, like the others am sorry that you are having to deal with this disease. I too deal with the daily continual burning. I received great relief from the Carbamazepine. Unfortunately I ended up with an allergy to it. I am now slowly going on Oxycarbazepine which is related to both Lamictal and Carbamazepine both which I reacted to with hives. I'm hoping I luck out with Oxycabazepine. I did better on the Carbamazeipine than the Oxycarbazepine, however, it has helped. I'm also on 3600 mg of Gabapentin. I take 5mg of Hydrocodone when the pain gets to where I can't deal with it. I have found that Clonazepam helps with the anxiety when the pain gets bad which also seems to help. Finally, I pray and ask others to pray for me. That doesn't always reduce the pain but helps me especially when I am feeling suicidal. I have dealt with chronic Clinical Depression for most of my adult life and contemplated suicide many times. Antidepressants helped me and should help you. I have been off antidepressants however for almost two years due to finally completely giving God my struggles with depression. I have had TN2 for one year now, diagnosed finally in May of this year. Sometimes I yell and cry out to God as my anger and frustration at having yet another pain disorder gets to me. TN2 has sidelined me more than my fibromyalgia, myofascial pain syndrome, osteoarthritis or migraines ever have. He is a big God and takes all my frustrations and from Him I receive peace. I encourage you to talk to your doctor about your thoughts of suicide. Both Amitryptaline and Nortryptalin, which are old school antidepressants, but also help some people with TN, may help you deal with both the suicidal feelings and the TN2. Also, try looking to God and giving Him your frustration, pain and suicidal desires to help you deal with this affliction.

You might also try keeping an online headache diary through iheadache.com It is primarily used for people with migraine headaches but you can add symptoms and medications to taylor make it for your headaches. I like it because it gives me more information about my headaches that I can in turn take to my doctor. My neurologist initially gave me a calendar to keep track of the days I have TN symptoms. It was either yes or no. That helped me not at all. The iheadache.com information has allowed me to see if the medication is working and how well. I can now see that there are days I don't have TN symptoms (few and far between but they're there) and that there are days and/or hours during the day that my TN symptoms are not bad. I just don't pay attention to whether or not the headaches are migraines or not. I can tell that from whether or not I used Imetrix and if it worked. There is also a place where you can write notes. I have used this as a headache journal where I write about my feelings about the day, especially if it was a tough one. I have found through this particular app (use the one online not on the phone app) that I do actually have good days, where as before I would just look my TN symptoms as continual dismalness. That has helped me deal as well.

Hang in there and enjoy the days where you are pain free or have less pain. You may not be having them now but you will. When your having bad days look up. I'll be praying that something starts working for you.

God bless you,

Gloria

Meg-

Two more suggestion:

  1. If you haven’t bought the book “Striking Back” I strongly suggest you do so. It is a comprehensive review of our disease. You can purchase it online at TNA.org, or I believe they still send a copy if you join the organization (http://fpa-support.org). While some of the info pertains more to Type 1 or classic TN, there is a lot of info on our Type 2 as well, including things that help.


  2. There is a discussion thread on this site that asked sufferers to list all the little things that helped with Type 2. I’ve tried to include the link here:



    http://www.livingwithtn.org/forum/topics/share-your-little-helps-wi…



    If it doesn’t work, just do a search for “share your little helps” as a discussion topic.



    Hang on to hope & keep the faith. We’ve all been there.



    mrl

Hi Meg

I am also sorry you are experiencing this burning pain. I ditto above suggestion. Mindfulness has been best for me too (as well as a concoction of meds I have more or less adapted to but it takes time and patience).

The thing about mindfulness is that you can learn that yes, you have this pain, but you are not your pain. You can find your way.

Keep Heart
Bellalarke



balcony said:

Dear Meg,

Very sorry that you are suffering so much.

I have had type II TN for many years with increasing pain for increasing hours in the day.

Besides medications which are decreasingly effective, I have found practicing Mindfulness most beneficial!

The paperback book I have found most beneficial by far is The practicasl neuroscience of Budda’s Brain happiness, love and wisdom by Rick Hanson, PH.D. with Richard Mendius, PH.D…

Mindfulness has helped me be at peace with the extreme pain.

Sincerely Bill I.

I felt the same. I do not see any hope as of now.

I have to quit my job because of this 24/7 pain. I am seeing a psychologist now and learn to live with the pain. I can't seems find a doctor who know how to treat my pain in here - SoCal.

I know it can feel hopeless at times. I've only been dealing with this for a few months and I've contemplated suicide a lot. If you can find a neurologist who is willing to try different medications, that might ease the pain some. I'm working on accepting the idea that this pain will be with me. I keep repeating to myself "I have pain but I am not my pain". This is the hardest thing I've EVER experienced. I'm sure you understand. I hope you can find some hope here!

Anne said:

I felt the same. I do not see any hope as of now.

Thank you Meg. I am learning to accept the fact that this pain will be with me. Thank you very much

Don’t give up hope yet, ladies. You may not ever be rid of the pain, but try to hang in there… Most people will find something that improves the pain - or life - at least somewhat. Try different doctors, practitioners, therapies, conventional and unconventional. Do your own research! If you haven’t read the book Striking Back, it’s worth the read. I was convinced I was going to die: either from starvation b/c I couldn’t eat, or by my own hand b/c the pain was intolerable. Life was very dark. It was about a year, and eight doctors (plus a few non-physicians) later before I found somebody that helped.

Also, you might go to the post entitled “Little helps” - I tried several items from that conversation thread. I also held onto a post from someone else, who was where you are now, but kept trying different doctors and treatments for over a year before she found help. That is what helped me hang on. My pain is not gone, but it is far more manageable than it used to be. But it took forever… Don’t give up hope yet!

I can remember getting all my affairs in order and deciding to end the pain as well, I couldnt live another day in that kind of pain, mine is a burning 24 x 7 pain no attacks just constant horrible burning pain, then I decided to fight at the last minute glad I did and I now have a St Jude PNS system surgically put in and now I am back to work the pain is still there but is managed with just simple tylenol there is hope keep reaching out , this site and another one and a friend who took an interest in me got me thru dont give up I know where you are I was there once as well, there is hope truly…feel free to friend me and see pictures of surgery and post op

My wife is on a new narcotic that reportedly has a good effect in Nerve pain. It is called Nucynta. She has had type 2 symptoms for 5 years. We have exhausted 3 major hospitals with no relief. She has added Abilify to her regular antidepressent meds. I hope you have better luck with the condition than Cherry has. The pain has pretty much ruined her life. God Bless!!

Please tell me about the PNS system if you can...Thanks..

kwebster said:

I can remember getting all my affairs in order and deciding to end the pain as well, I couldnt live another day in that kind of pain, mine is a burning 24 x 7 pain no attacks just constant horrible burning pain, then I decided to fight at the last minute glad I did and I now have a St Jude PNS system surgically put in and now I am back to work the pain is still there but is managed with just simple tylenol there is hope keep reaching out , this site and another one and a friend who took an interest in me got me thru dont give up I know where you are I was there once as well, there is hope truly......feel free to friend me and see pictures of surgery and post op


Grecio said:

Please tell me about the PNS system if you can...Thanks..

kwebster said:

I can remember getting all my affairs in order and deciding to end the pain as well, I couldnt live another day in that kind of pain, mine is a burning 24 x 7 pain no attacks just constant horrible burning pain, then I decided to fight at the last minute glad I did and I now have a St Jude PNS system surgically put in and now I am back to work the pain is still there but is managed with just simple tylenol there is hope keep reaching out , this site and another one and a friend who took an interest in me got me thru dont give up I know where you are I was there once as well, there is hope truly......feel free to friend me and see pictures of surgery and post op