Hello Hollywood Girl!
Thank you so much for your words of kindness. I am so glad you have found a decent place to get your meds. The very sad thing is that a lot of doctors in the emergency room and especially the nurses have no idea about the ATN. They only are aware of the TN1, so when they say “narcotics don’t help this type of pain”, I have to inform them that I am also on, and have been on all of the anti-depressants, anti-seizure, anti-inflammatory drugs and more~! Only a couple of them seem to help, but not much. Oh, boy, then their demeanor changes drastically, like I belong in a crack house. The one nurse even had the audacity to tell me “If you people would follow through and do what your doctors tell you, you wouldn’t need to be here”. I had to tell her I have been following EVERYTHING all of the specialists have instructed me to do, and this includes taking narcotics but it’s like walking around getting freakin’ punched in the face over and over. I totally wished I had a pinata with her face on it at that time. lol I was told to go to the emergency room if I absolutely could not handle the pain. It’s not like I enjoy taking all of these meds.
Glad you felt some relief. The heat from the capsaicin gives me the most comfort so hopefully will work for you too. The doc told me to use it regularly and over time the nerve will calm. I was sceptical but it did lessen the intensity of the pain …it took months but I am mostly pain free these days. Good luck
Hi Theresa,
Wow, people can be such jerks, can’t they? A friend of mine who suffers from chronic pain said he has a letter from his doctor that he keeps in his wallet that states his situation and that he is properly using what is prescribed per the protocol, etc. Anyway, he suggested to me that I have my neuro write a similar letter to keep with me in case of ER visit or hospitalization. I forgot to follow through on that, but hearing what you’ve been through, I think I’ll ask for that letter. Perhaps your doctor would write a similar one for you to keep in your wallet? My friend said it is not uncommon, particularly since we chronic pain sufferers are so often discriminated against due to the “crack down” of unlawful distribution of opioids. They’ve become so overzealous that they are picking on the wrong people. I’ve heard that some hospitals won’t even accept patients who are on opioids. How insane is that?! Anyway, thanks for asking all those great questions! I’m taking notes and going to ask my neuro for some of the topicals.
What a great idea. I also have found aloe juice also works wonders for short term relief from the burning. I drink the Alo brand.They have a lot of flavors and even have a lower sugar ones or pulp free.
Hi Theresa
I feel the dentist should have referred you to neurophysican straight away. About This illness the must be well aware of; as most of the TN pain starts after dental treatment- tooth extraction, root canal treatment etc…
I suffered just like you though it was very long time ago when TN was hardly known. I was belatedly referred to Neurontin surgeon but not before losing two healthy teeth the dentist thought it must be the tooth.
Have you tried Tegretol & Gabapentin? Please ask the Neurologist whether u can try them for your pain.
One good thing about this illness is that it goes away on its own (remission) for varying period, when we are absolutely pain-free. I hope & pray you get that soon.
Best wishes
Dear Theresa,
I’m so sorry for the pain you’re going through… It is something that can only be truly understood by those who have gone through it. For me, I’ve had periods so bad I couldn’t talk, eat, shave, be in the wind, work, etc. Last round I had burning in my eyes and sensitivity to light so bad I had to stay in a totally dark room or suffer absolutely excruciating pain. There is hope. It can and does go away, although medical science has no reliable method of making it happen. I’ve been completely pain free for nearly a year now. Never have taken any drugs or done surgery, as I didn’t want to start down that road. There’s two things worth trying if you haven’t already.
- Upper cervical chiropractic
- Eliminating viruses from your body. I’ve come to believe that a viral infection in the nervous system itself is the cause of demylination of the nerves. See this post for more info. Viral infection in the nervous system cause of Trigeminal Neuralgia and MS?
My wife and I have four precious boys as well, and I understand what it’s like to not be able to read them a story, or play with them. Keep courage dear heart, and may God hold you close!!
Thank you so much for your encouragement. It has passed the two-year mark and I have yet to be out of pain. I know that some specialists online feel this condition is not from the extractions, yet all of the ones I have gone to believe it was. I think because I awoke in the middle of the surgery with an electric like shocking pain through my whole my whole body, and the fact that the surgeon said he was unable to get around a nerve, indicates that is was from the extractions. One of the hardest things is that because it has unrelentingly continued for so long, people seem to have lost their patients. The ones that you used to be so closed to have moved on to other friends. Everyone in my family except my mother has even stopped calling because they say they don’t know what to say anymore. I don’t talk much anymore about my pain. I know it tends to bring others down. It is strange that if I did have cancer, people would want to see me pass so I wouldn’t be in pain anymore. Well, I am tired and I don’t want to be in pain anymore. I just wish that taking my life would be accepted so I couldn’t have to be in pain. It would be different if there was a light at the end of the tunnel, but the doctors I have seen all have told me the chances of it going away is very slim so they can just try to make me comfortable.
It’s tough when others don’t understand. I found it helpful to describe the pain in ways that they could relate to. For example, I told them that I’d far rather have a red hot iron held to my arm than to go through one of these attacks. I described the face shocks in terms of having a cattle prod applied continuously to my face. Reality for me was that the pain from TN was worse than either of those scenarios. But, describing in terms that people could at least relate to helps a lot. I don’t think being silent about your pain is a good idea. That will lead to isolation and misunderstandings. Perhaps consider taking the approach of honestly describing the pain, and then keep it from becoming depressing to your friends by trying to encourage them in ways you can.
I understand your feelings of hopelessness…I’ve had them. But I am here to tell you that regardless of what the docs say, it can and it does go away. My first attack came at 13, and I’m 37 now…and I’ve lived the vast majority of my life without any impact. Happily married, four boys, CEO of a company, and tons more wonderful things. One thing good that TN has done for me is it has taught me to treasure every single moment without pain, and make the most of the time I get to spend with my loved ones. I’m flooded with gratitude just to be able to enjoy a steak, read a story to my boys, feel a rain drop, or a soft spring breeze on my face without excruciating pain.
You will have to take your own path to get there, as the medical world doesn’t have a clue as to the cause, or the cure, but there are thousands of people who are living free of pain today that have gone through this. My sister gave me “What Time Tuesday” by James Tomasi, what a game changer. In my experience, UCC is a relief of pressure/disturbance on the nerves, and thus of symptoms. I think the experts are right that your TN was not caused by the dental work. I’d guess that was a trigger that stressed the nerves whose myelin lining was thinning from an internal viral infection. Same thing would happen to me when my neck was knocked out. It’s even possible that the way they twisted or positioned your head during the extraction would have knocked your neck out of alignment. It would have for me, and I learned to be very careful. An interesting note…since I went through the olive leaf treatment a year ago, my neck doesn’t seem to matter any more, like the nerves got their insulation back, and even if my neck goes out, I’m not going to get shocks.
What also helped me through the dark times is focusing on what I believed would be a path to healing, and rigorously following it. I created a “TN conquer list” that I believed addressed the root causes, and provided the best chance for healing. I looked long term, and figured I might have to work a while to rebuild the nerves.
Ok, so I’m trying to encourage you to look up. Vulnerability to attacks is definitely related to the health of our immune system. Stress, loneliness, depression, etc, are well known to depress that. Fight those things with a plan, determination, and a reliance on God’s strength. Ask your friends to pray for you and to check in with you regularly. Share an encouraging word with them in return, so they leave the interaction blessed as well.
Try not to let fear that this will never go away add to your stress. Hope and courage is the strongest ally you have in conquering this.
There’s hope…I promise!!!
Thank you so much for reaching out to me. It truly means so much. I have a different type than you. I have TN2, atypical. I don’t experience attacks like you. That too would be unbearable. My pain is embedded deep within my gums and mouth. It is like an intense throbbing. It also feels like I have a chemical burn in my entire mouth. This pain goes on forever. I have not had a break since my teeth were removed. I do have to get my spirits up. This is the complete opposite of the real me. I was the spitting image of positivity. lol. I do hope that your pain remains in remission. I am sorry. I was just venting earlier. It has been really tough over the past couple of days. I really am not a “Debbie Downer” lol Sorry if there are any Debbies out there. Thank you once again for reaching out and all of the words of encouragement. I will really consider your advice.
How are you doing?No really-in your deepest of your heart-how are you?
Can you look outside and see the sun,or the clouds or a kitten does it make you a bit happy?
Can you hear the birds sing?
I was at the lake today and saw a man I had not seen for a few years.He had brought garbage bags down to clear the litter from the storm.He is from Viet Nam-a boat person.He is so thankful to be in Canada.He said I looked different and we talked about the waves.Each wave is the start of something new.I told him I know all this but obviously not right in my heart.If I did I would be more accepting.
From reading many of the people on this site-so many had their TN symptoms start during dental treatment.For people to say it was not the procedure-but you were going to get it anyways-is kind of like telling people that the car hitting them did not break their bones-it was the osteopenia that you knew nothing about that is the real problem.
I know how you feel about family and friends.No one wants to listen to it all.They do not get how burning constantly is a real problem.
And they don’t know what to do.
This is how I am reaching out to my family.
I look up one Google joke and send it to them every day.Something silly or to do with something in an e-mail they sent.Just so they know I am still here and I am not complaining.
I so wish we lived closer to each other.
What meds have you tried?Give me the list again.Maybe we can come up with something.
Hugs and more hugs
Hello, Ellen. Thank you so much for your understanding and taking the time to also write back. I am currently on Effexor, clonidine, Lyrica, Opana and oxycodone. I have also tried gabapentin, carbamazepine, Celebrex, topiramate and a couple others. I either had an adverse reaction or they were some of the ones we tried at the beginning that simply was not working. While Opana and oxycodone take the edge off, they never completely eliminate the pain. They were added after the others which when I was taking them without them, I had absolutely no relief. That is another thing that is hard. The negativity about the narcotics I am on. They may only take the edge off, but at this point, I will take that little bit of relief. My doctors do believe this came from the extractions, it is what I am reading on-line that say’s that is not correct. The ocean can work wonders on a person’s body and soul. I do wish we lived near one another to walk and talk together. My husband works in North Dakota for 8 months out of the year at which he is only able to come home a few times within those 8 months. I have four sons, 11-year-old, 19-year-old, 25 and 29-year-old. The youngest three are still home. About two years ago, my 26 year-old was hospitalized with a breakdown and was diagnosed with bi-polar or possibly schizophrenia, this was shortly after this happened to me. Anyway. I do have to get out of this state of mind. I can even tell writing this I am catching my negativity. What type of meds have you found works best for you? I am so happy for you that you can enjoy the water and I really love the idea about sending a joke.
H i there-Thanks for getting back to me.
I do not see amitryptiline on your list of tried and failed.
The amitryptiline was like a kiss from an angel.It worked great.I just had bizarre reaction with numbing of my hands at night-but that is a truly weird reaction.
The amitryptiline worked tons better than the effexor for me.
I wonder if your doctor would consider swapping you.
I am just on tylenol 3’s ans codeine.I found the stronger stuff did not work at all for me.
I have not tried baclofen-I would love to try it.
So I take gabapentin,tylenol 3 ,medical marijuana at night to sleep.
My burning is consant-I do a mix with some other over the counter stuff that helps with the burning a bit-but like you it is non-stop.
The amitryptiline was the closest I got to something that works.I have told my doctor I now want to got through all the tricyclics until I find one that does not have the bizarre side effects.
like you-I had a pharmacist helper utterly humiliate me at night accusing me of being a poly-pharmacy drug abuser when I went to get a prescription filled.I told her I had returned the last drugs to them but she could not find the record.It turns out the pharmacist had not recorded the return of the narcotics.Apparently there are quite a few people working in pharmacies that are addicts…
the tegretol and trileptal did nothing-some scabby sores on my right leg after the tegretol-not sure whether that caused the sores-but the constipation was killing me.
I wish you could try one of the tricyclic anti depressants-at a tiny dose it worked.
Have you read the book Striking Back?
And just so you know-I am walking on a beach on Lake Ontario-a big beautiful sand beach with tons of beach glass and driftwood.
I am making some glass curtains and wind chimes for my family.
I am glad that you have a captive family group with you.
I have one boy in assisted living(he was born with spina bifida and then was hit by a hit and run driver about 10 years ago while riding his bike)and another son who lives in ottawa.my ex passed away last year.
I have a sister with schizophrenia.her meds are working for her and she is absolutely brilliant.But it is stressful when things go wonky.
If there is any kind of meditation group that you could go to
or even do stuff on-line?I am awful at following through with it.My one son got me the book Full Catastrophe Living for Christmas-but I can’t open it for some reason.
I really hope you stay focused-believe that things will get better-no point dropping out now.
Maybe some beach glass would make you happy?
Silly things is all I can do
That and virtual hugs
Hi Ellen and Hyangle, if you have found a medication that helps with the pain, but you can’t take the systemic side effects, I would encourage you to consider a topical version of that med. I’ve been experimenting with amitryptiline and gabapentin in particular. The gabapentin is a no go (makes things worse), but the amitryptiline seems to be working quite well in a 1% solution (5% is a common strength but even the 1% feels quite strong to me).
If amitryptiline is helpful, a very similar drug with much fewer side effects is nortryptiline. In fact nortryptiline seems to be the “go to” drug for neuropathy now, due to the mildness of side effects. It’s also good to remember that the side effects of these drugs become less bothersome over time. (I have a lot of experience with systemic tricyclics).
Don’t ever give up trying to get answers and find new medications and solutions to this problem! There are so many different avenues to pursue, and new ideas coming out all the time.
Sarah
Hello Ellen. It is interesting that you have a sister with schizophrenia. My son’s diagnosis could also be bipolar. He will have nothing to do with any diagnosis. He believes the doctors are all wrong. It has been extremely difficult to live with. He is very disruptive and does not want to follow any rules of the house or even get a job. It is amazing that you have the beauty of the glass. That would be incredible to wonder how each piece arrived at their destination and then to find creative ways to enjoy their beauty wold be therapy in itself. I will have to speak to the doctor about the different medications, as I know they are very careful because I have had such negative reactions to a few. It is so nice to hear from so many like myself. Ellen, you sound like such an amazing person, it is sad that we live so far.
hi Ellen,
I grew up in Ontario and did my university in Ottawa! beautiful place! I live in California now and I miss Canada everyday. I even dream of snow sometimes! literally I have dreams of snow in Ottawa 
Anyhoo i think you should try nortriptyline as the ziggy mentioned also, its the standard.
Also Full Catastrophe Living is a must read for anyone! especially if you are dealing with chronic pain or depression/anxiety. Your son knows his stuff, that is THE book I would offer to anyone suffering from chronic pain.
If you find yourself not wanting to open it perhaps try to get the audio book?
Good luck and enjoy the beautiful summer in Ontario.
Hi There
Too funny.
My son lives in Ottawa and there is a pile of snow there still.Want me to mail you some?
I had told my son to get me the book.I know it is a good book.I just cannot spin my mind into reading it.You are right-getting an audio would be good.
I have already tried nortryptiline-same results as the amitryptiline version .
Am starting tofrinil tonite.My one son was on that for bladder problems when he was a baby.Maybe my bladder will improve…
Feels like minus 20 celsius today.No idea how that temp is in US speak.
Enjoy your warmth
Hello Ellen. I replied to your post but it was farther up. If you would like to become facebook friends please request me Theresa Hayward from Mishawaka Indiana
Oh
I am not on Facebook,But I am thinking about it.Thank You
When I sign up I will message you on this board and then start really moving forward.Thank you again.
That is one thing I find-sometimes the messages do get lost in the long strings.
I thought it was just me in my dizzy little brain.
You take care and I will sign up on Facebook-I just needed your friend request.
Hello, Swayam. I am checking to see how you are doing. It is sad that we both have pain that no one seems to be able to help. These past couple of days have been really tough on me. I hope you are finding some comfort.
Hi
I have the topical version and it helps somewhat-ketamine,amitryptiline,baclofen and lidocaine and one of the longer acting caines.Specialist who disappeared prescribed it but I am having troubles getting refills .(wonder why?)
trying the new drug tonite.
Maybe sleep through the night without having to go pee.
Such are the little victories.
Stay warm