Newbie to TN

THANKS BAUDY.

Hi Baudwalker,

As I understand you have pain because your nerves were damaged? Did you have constant pain or only electric shocks? I have constant pain and I am trying to find ways to live with it. Do you only take medicine or do you have some other ways also to cope with the pain?

Hi Dona

Mine has been quite a different path than most. Started as a slight sensitivity to the left upper face. Then optomitrist noticed the left eyelid did not work (at all). Went through the 'Bell's Palsy' and all the other 'palsy's' while the experts chased their and my tail!

Had the electric shocks on left side of face, numb jaw (left) and sensations varying all of the time. Biggest issue was the HEADACHE FROM HELL!. Centered on the left eye and bad enough to to be the worst pain I have EVER suffered.

Medication varied but ended up on Lyrica for the headaches and the like and oxcarbamazipine for the usual line up of facial shocks. Also used Zopiclone and/or Amaitryptiline to help sleep.

After a lot of chasing of little smudges on MRI and PET scans I ended up agreeing to have the left PAROTID gland removed. I think it was called a radical left parotidectomy (?).

Anyway, high up on the face and biopsies showed some sort of cancer cells of a not very often found variety. The gland comes wrapped around the same nerves they treat with other TN issues. They took the whole thing and all I have left is controllable using just oral morphine now. Not even paracetemol needed. Still get headaches, tingly face, extra sensitive areas, left side of nose iches like mad and them seems to have no feeling at all.

Very strange indeed but after three years there are very few complaints coming from my end.

Just an example of WHY YOU NEVER GIVE UP SEARCHING!. In my case I feel I have been extremely lucky so far. Nothing says it won't come back in some form or other, but I will deal with that if and when that happens.

I had learnt to live with my lot but continued looking for better relief with my GP right behind me. I hate to harp but for me the way forward is KNOWLEDGE, MORE KNOWLEDGE and then ask again. NEVER accept a "NO" without a lot of supporting evidence from whomever is saying "NO".

Good Luck

Baudy!

 

the tergretol was working great then all of a sudden it came back with a vengenous. this thing has a mind of it's own.

Hello Tnhurtsme, What drugs are you taking, if you don't mind the question and also, have you had any procedures or scans?

I was on gabapentin for ten months then it quit being so effective so switched to oxcarbazepine for 3 months that worked great then it quit working so i decided to get back on gabapentin an also take oxcarbazepine my current dose is 900 mg of gabapentin an 150 to 300 of oxcarbazepine i have muscle pain side effect from oxcarbazepine i still have pain just not severe

Hi Tnhurtme,

I am not sure do I have atypical tn or neuropathy. I have also constant pain. I am taking 3600 Neurontin, 25 amitriptylin, 50

nortriptylin and some inflammation pills. I also take opioids for strong pain. I have tried Tegretol, but it didn't work. Also had a MVD. Even when taking all these meds I still often have a lot of pain. I am really scared that maybe one day meds stop working. I am only 26. How old are you and how your pain started? Is there any hope that your nerve will just heal one day? I keep thinking that if I have Neuropathy then maybe some day the nerve will heal...

Hi dona

I got an ear infection tgat attacked my nerve an it slowly got worse on me it took 10 months to do it but the monster came to play for me surgery can pose risk also on your medication i thought about trying

amitriptylin just not sure if it will work for me.

I got cymbalta but i haven't taken it because of the withdraw is really bad if you have to stop taken it my pain is constantly hurting too its pressure like with stabbing burning if i miss a dose let me know anything else you can think of thanks

Tnhurtme,

I have same kind of pain. I feel that my gums have been hurt, it's constant trauma feeling. Plus sometimes it burns and hurts really bad and nothing helps. How do you manage to live with this constant pain? It has made me depressed and I have anxiety almost all the time. Pills often don't control my pain and then my anxiety gets really bad. I started to see a psychologist, hopefully that helps. I'm only 26 so I'm really worried can it last all my life. With time I get immune to drugs and then what?!? Has your doctor said that you will have it all life or will it go over soon?

Where do you live? I'm in Norway.

Dona

Im sorry im not sure but i believe it may be life long

Im not positive on this but my pain got worse over a year im going to keep praying that it will heal on its on i have got immune several times so far i have had to update my meds oxcarbazepine quit working an it was horrible pain for me i was dying it was supee intense constantly burning an stabbin. Im on gabapentin an low dose of oxcarbazepine because when i get more of in my body it makes me hurt all over. I have a neurologist willing to try different medicine with me an even injections but im afraid that it may make it worse an even surgery may make it worse plus i joined uk trigeminal neuralgia blog you may too. For advice. Gabapentin made me really tired after 6 months of being on it so i quit it an tried something else topamax was my first try an it worked but made me really sick so i tried oxcarbazepine it was rocky for 3months then i was immune to it. Best of luck though i dont get anxiety any more because of the drugs im on now fix most of it

Oh an im from texas

Im 31 dona

You are only 31 and I'm 26. If it's life long then it's gonna be one really long life!! I have to take opioids already now, that's scary. My pain is so intense that it feels almost impossible to control it. Some days are better but then suddenly I get really strong pain for days. I have read that it gets worse in winter. Winter in Norway is really cold so I'm scared. Not sure does it get also worse when I'm only inside and won't stay outside in cold?!

I am going to a hospital 16th of September and try ganglion block with anesthetic. As I understand that should show is it 100% trigeminal nerve. I have read that they can also mix something in there so that it would last for weeks. I'm also considering Botox. I have tried acupuncture, 10 sessions, but not sure did it help. I have read that not eating sugar might help, so starting from this week no sugar. Also taking magnesium and omega fish oil. Have you tried these options?

All my life is around this stupid pain and I hate it! I feel that my life is ruined Do you manage to live normal life? Do you manage to work/study?

You should move to texas im just kidding im really sorry you are trying to cope just like me its been a horrible battle maybe you should ask to try a different mix of medication. I live somewhat of normal life im still single which sucks but i deal with some pain everyday it depends on the weather sometimes that makes it worse from biometric pressure i got mine when i turned 30 so its been over a year

I have tried both no sugar and magnesium without discernable effect. However, I did find that both neck and shoulder stiffness and cold sores play a part in my Tn(cold sores live along the Trigeminal nerve in the face). If I feel a cold sore coming I immediately take Famiciclovir (available without prescription) and I have physio for my neck and shoulders.

Have you considered Gamma Knife (stereotactic radiosurgery). This worked for me. I wish you well. Keep searching, keep trying anything and everything, and, research, research..

Can biometric pressure make it worse... That might be my case also. Some days I just get a horrible flare up without any reason. Flare ups last days. But there is nothing I can do about the pressure, that's not good.

But why don't you try ganglion injection or Botox? Maybe it will help. I have read that it helps many with different facial pains. Can't live on meds forever. Has anyone offered you killing the nerve? As I have understood people with our kind of pain shouldn't do it, which sucks. I have also read about Motor Cortex stimulator. They don't do that in Norway.

Do doctors know about atypical TN/neuropathy in Texas? Norway is a small country so doctors here know about typical tn, not so much about atypical. So I pretty much have to do my own research and then ask it from them. At least treatments/operations are free here for everyone, not like in US.

Norway is doing a research about Botox. They inject it to the ganglion and that has helped many. Only minus is that they have not tried it on atypical TN. I met the doctor who is doing it and he offered it to me. But I will first try this old fashion Botox treatment where they inject it somewhere else, not ganglion.

That's good that you can live somewhat normal. I try also, but sometimes it is sooooo difficult! First I just sat at home and cried, but now I do things even when I'm in pain. I try to accept this horrible disease and pain, find a way to live. Have had it for 9 months already, but still feels like it is not real and it is just a bad dream. I'm not single, but I have no kids. If I wouldn't live with my bf, then I think I would move back to my parents. It helps to be around people, more distraction and less panic attacks.

Thats so right i try to stay busy an not think about it i have to pay for my surgery or botox i have thought about it but most arnt permanent so I'm just trying to figure out what's next with all the decisions I have to make on the treatment plus I understand that is very difficult to manage my pain and taking my medicine each each day at certain times helps but I still get side effects from one of my medicine oxcarbazepine

Hi Donna,  Valkyrie is right.  Physio to neck and shoulders is good idea.  If neck is out of alignment in any way, it could be problematic.  I've had chiropractic in the past, and it definitely helped.  I'm also taking Vit.B12 METHYL 5000mcg 1 sublingual tab daily.  Many TN suffers swear by it.  Worth a try.  Apparently it aids in repair of myelin sheath protecting the TN nerve.  But it must be METHYL and [u]not[/u][u] Cyan.[/u]

Im also pondering on taking cymbalta but its just as addictive as opioids

Hi Valkyrie,

Happy to hear that gamma knife helped you. I haven't considered it as I have atypical TN. I had a MVD, which took shooting pains away, but I still have strong constant pain. Last days only opioids have helped. Do you have typical or atypical TN? Any idea how you got it? I just woke up one day and had a little bit pain under 2 teeth. First 4 months visited only dentist as I had no idea that there is disease called TN!

How are you doing after gamma knife? Still some pain and taking pills or no pills and no pain anymore?

My mother had Tn also. So much for it not being hereditary. Mine started in 2011 when I got in the shower and the water hit my face. I knew what it was right away because of having mum live with me the last 6 years of her life.  The Gamma knife only took effect on 15th April this year and since then I have reduced from 1100mg Tegretol with 450mg Lyrica down to 900mg Tegretol with 325 Lyrica. I have no pain. I have stopped reducing meds for a bit on the advice of my doctor who thought I was progressing too fast. I still expect every day to wake with the pain. It’s like living on the edge of a precipice. My pain was left side of my face only and often I could not eat, speak or even sip water. I shudder at the memory.

How to know is problem coming from neck? Should I have some pain in neck? I don't have any.

I couldn't imagine that I should pay for all the treatments. That would be a lot of money! Which treatment/operation your doctor recommends?

I will go to a hospital on 16th of September and will let you know after what doctors tell me. I feel that our pain is very similar. In MVD they found scar tissue on my nerve and also one broken blood vessel. So I am not sure anymore do I have atypical tn or neuropathy like you have. I will ask about Botox in hospital.

Do you have contact with anyone who has atypical tn or neuropathy? I try to find young people who have it to discuss different treatments and options. I feel that us who suffer know more about treatments than many doctors.

No one in my family has it and before getting it I had never heard about this horrible condition. I'm happy you found something that helped you. I hope you will never get this pain back.

I think yours is more typical TN. With my type many doctors say not to destroy the nerve.

I think that even when I find something that helps me I still will live worrying about it coming back. Now when I have good days I'm still worried and get anxiety. I try not to worry, but it is difficult. This horrible pain has traumatized me for life!

Dona, do you have the book Striking Back?  It has some great info in it.     Get yourself a copy if you don't.  

Patricia, no I don't have this book. I have heard a lot about it, so maybe I should buy it. I have atypical TN, is there anything about that also? Or is there only about normal TN?