Will I ever go into remission with TN?

Thanks Anne. Yes, I'm gradually coming to terms with it now and learning to accept my condition. I think its partly because hardly anybody I meet seems to understand the condition and what its like (and can be quite unsympathetic!) and partly because I never ever expected to be taking painkillers every day of my life (I know some people who have been on them for years). It's come as quite a shock. I remind myself that at least I'm still here and have my independence and live in hope that something can be done for me one day. I'm sure I will be seeing the doctor again soon. I will have to get the results of the Maxillo-Facial examination that I have this week as well. Tomorrow I will go and request a repeat prescription for the tablets. Maybe my doctor will prescribe stronger ones when I see him too. Glad you're coping okay and hope you're not feeling too bad at the moment.

Stephen I have had this nerve problem for 6 years.....comes and goes...last about 2 months. This last one was the worst....November and December. I am taking 2000 mg of gabapentin....St John’s Wort with vitamin B...getting Bowenwork done......I have been pain free for 2 weeks now,,,,,,just small shocks ever so often....this’s I can handle.....hope this helps.

 

Hi Marlene, I've heard of MVD and will certainly look into this further if the opportunity to have surgery comes up. Yes, I will talk to my doctor about increasing the strength of my pain medication. Fortunately he is a very good one and knows something about our condition. It's curious because I saw a neurologist about a year ago and he didn't seem to think it was TN that I had. He actually sent me back to the dentist! The dentist has seen me on several occasions and can't find anything wrong (she's mystified!). I had an MRI scan about 8 months ago and apparently nothing showed up there either! I have a Maxillo-Facial examination this week but I'm not optimistic anything will show up there either. It could be a case of going back to the drawing board, so to speak! I know that specialists don't always have all the answers. I found this out about 20 years ago when for 18 months I went backwards and forwards to see ENT consultants, none of whom diagnosed the problem I had. In the end I went private and saw the top man in the country at the time who said I needed a septoplasty. Although it was expensive, it was such a relief to see someone who knew straight away what my problem was. Fortunately I had a good job at the time and was able to afford the surgery. I'm not one to run down the NHS usually but they did fail me on that occasion. What did you mean by 'MRI with contrast'? Is that not what I have had already? Thanks very much for your advice. I'll let you know how I get on and I'm sure you may be able to advise me further as time goes on. I hope you are having a relatively pain free weekend!

Hi Stephen  I just wrote you a very long message and somehow lost it.  Will write again soon.  I am a bit upset - need to calm down.  

Hi Marlene, sorry to hear you lost the message. I sometimes copy mine as I go along just in case that happens to me Its not so bad if it happens in email because it usually goes into the Drafts folder! Feel free to write anytime. I might have some news about my Maxillo Facial examination tomorrow and they will probably write to my doctor about it as well. Take care, Steve

Hi Stephen - I didn't forget you - just having some bad days.  Will be in contact soon.  Hope you are doing ok!

Hi Marlene, I'm not doing too bad at the moment. Managed to avoid the "Aussie" flu so far! Hope you feel a bit better soon. Take care!

Hi Stephen - I am feeling more like myself tonight and wanted to get back to you.  How did your Maxillo Facial exam go (sorry, but I really don't understand what that is).  I had seen a Neurologist after I was diagnosed with TN and wanted an MRI.  My facial pain was so severe I was sure i had a problem with my brain.  I did have the MRi and it came back clean.  If I am repeating myself here, sorry.  When I had my MVD surgery, the surgeon found three different problem areas.  Two he could correct.  The first one was in my jaw area my blood vessels were all comingled together and these had to be straightened out.  the second problem was a blood vessel had grown up and wrapped itself around my trigeminal nerve and wrapped itself around the nerve chocking it off.  The last issue was that my brain stem was bruised and covered with scar tissue.  thus was my first surgery and the surgeon cannot offer any explanation for this.  This first MRI was done without contrast meaning that nothing would show up only a mass, i.e., tumer.  Last fall I joined a TN group in Chronic Pain sufferers and would read many comments and remarks about their MRI's showing compressions.  This really confused me.  I did a bit of research and found out that an MRI with contrast is done with dye inserted into your body.  When I found this out, I was really upset because if the Neurologist would have ordered the MRI with contrast, it may have saved me 3 1/2 years of chronic pain and the surgery may have been successful.  This is a question I did ask another neurosurgeon and she could not give me an answer.  I will never know.  I have been on disability since June 2010 and suffer daily with chronic facial pain.  I do have good days where my pain levels are tolerable but when they increase, I just go to bed.  I hope I have explained the difference between the 2 MRI's.  I have befrieded a wonderful girl in California who suffers like I do.  The only difference between us is my TN in on my right side and hers on her left.  We keep in close contact and she has been a blessing to me.  I am now in my 11th year with TN and I find family members, friends do not understand this disease at all.  I get very frustrated and at times will just keep to myself.  It's a horrible disease and it sure has changed my life.  I have read many posts and comments that people with TN have had the MVD surgery and are now living pain-free lives.  i am just thrilled for them.  I am anxious to know how yu are doing.  Any questions you have, please ask as I have been through it all.  By the time I had my surgery, I had seen 25 doctors, all kinds of specialists - I was on a journey to get well but it did not happen.  Take good care.  Chat soon.   Marlene

I tried to reply a couple of days ago but the screen froze on my laptop and I lost what I wrote! Never mind. I went to the Maxillo-Facial clinic and the specialist there examined me. He seems to think I've got TMJ (Tempero Mandibular Joint disfunction). I must admit, I'm not 100% convinced but I'll go along with the diagnosis for the time being. The symptoms of both TN and TMJ can be similar I believe. Something is definitely aggravating my trigeminal nerve though. Actually, surprisingly, I've been able to come off the carbamazepine for the past four days so I'm hoping my condition, whatever it is, might be improving. I still hit the roof if I touch my cheek/jaw in the wrong place but its not so bad. I must have done just that at 1.30am this morning and had to get out of bed for a while. It was not so bad after ten minutes though so I was able to go back to bed. I'm making sure I cover my face when I go out in the cold weather now (we may have some snow on the way and the wind has been very biting) and I look a bit like a ninja! I see what you mean about the MRI with contrast. I know the person doing the scanning gave me an injection. I think he called it a tracer. I remember crying out in pain because he missed the vein the first time! It's a pity you didn't have the correct MRI the first time. Like you say, it might have saved you a lot of pain. It seems like you had a lot going on with the blood vessels, especially with the one that was wrapped around the nerve. I'm so glad you have some support from the girl you mentioned. You can help each other. Just being able to talk about the conditions we have is a big help in itself. Friends and family do not always understand. I don't have any family myself and havn't seen my half-brother and step-brother since my step-dad passed on nine years ago. One was diagnosed with depression and schizophrenia and the other has always been in a world of his own. Not much support there I'm afraid! Fortunately I have a close circle of friends and they're more like a family to me now. Actually I keep in touch with my cousin but he lives in another county so I don't see him much (he's a dinosaur when it comes to the internet too and doesn't email!). Although I work part-time, I spend a lot of time alone too, but I'm used to my own company. I was brought up as an only child till I was 15. I had another hospital appointment today. I had to see a specialist at the Fracture Clinic. I had a torn cartilage in my right knee. He said I've got some arthritis in that one and wants me to join their physiotherapy group. Anyway, I hope you're not in much pain tonight. Take care...

Stephen so sorry to here about some of the issues. Since the turmric didn't help maybe you needed a higher dose. I had started out @ (2) 400 mg. as soon as I felt pain. Like most pain med's it has lost it's effectiveness for me. 

I did go to a nerologist  2 weeks ago. He perscrbed another over the couner. This is also very helpful. I decided I'm not going 2 over use this though. 

Alpha Lipoic Acid. I take (20 200 mg During the day. The Dr. said up tp 1600 mg a day.

I also take 400mg Carbamazapine at night.

No more electric shock going through my mouth. Praise God!

I saw the neurosurgeon & also a Dr. in the radiation department yesterday.

After talking to me husband we decided the  radiation was the least evasive & the Dr. said is the most effective with his experience.

It only takes 40 minutes & may take up to 6 months for full relief. I can stay on the pain med's until it's gone.

This is big "IT USUALLY DOESN'T HAVE TO BE REPEATED! 

Good luck with the radiation Vicki! Hopefully it will bring you some relief. I was originally diagnosed with TN but after going to see a Maxillo-Facial specialist last week I'm told I have TMJ instead. I'm a bit confused now! The pain in my jaw isn't so bad now but I might keep taking the turmeric every morning. What I don't understand is, if its TMJ, which affects the jaw muscles, why were painkillers like Ibuprofen ineffective but neuropathic painkillers effective in stopping the pain? All I know is that something is irritating my trigeminal nerve on the right side. The TMJ specialist has given me some exercises to do but they make the pain worse so I'm not doing them! Oh well, time will tell I guess.

Thank you Stephen. I am so thankful the Turmeric is working for you. Over time you may have to up the dosage for it to remain effective. 

Do me a favor, got to youtube.com type in relief of tmj. There is a lot of natural pain reliefs that are free & effective!

We'll be praying for you to go into remission! God Bless you!

Thanks Vicki, I had a look at Tmj relief on YouTube last week but have only watched a few videos so far. I'll watch some more this weekend when I will have more time. I'm not in so much pain now but still getting the mild electric shock/tingling effects on the right side of my face. Its always a bit unnerving when it happens. I'm usually talking to someone at the time. Hopefully it will go away soon. 

I previously told you I was going to have surgery. I'm still scheduled for it but have read about good reports from acupuncture. I am going to acupuncture appointments before my surgery in hopes to not have to have the surgery.

The acupuncturist said he should  know in the 1st appointment if it will be successful! 

I'll keep you posted.

Good luck with the acupuncture. I hope it works. I'd like to try it myself at some stage. I know that it can be prescribed under the NHS, so I'll have a word with my doctor about it. I was completely off the carbamazepine for one week but I'm having a painful weekend with my jaw and am back on them I think it is good to not leave one stone unturned in your search for a cure. It will be marvellous if the acupuncture works. Let me know what happens. In the meantime I'll check out those TMJ videos on YT 

My appointment was at 10:15 this morning. So far NO pain! I have to go back 2 more times this week. He said it is to reset the ANGRY nerve. I'm ok with that Anything for a permanent relief!

He remarked "Don't give up after the 1st treatment" Just like a chiropractor you have to continue to go back to make sure it's were it should be.

Really hope you try this route to be pain free. Good luck, God bless you.

That's great Vicki! I could certainly do with MY angry nerve resetting! Have you had any more sessions since you last posted? If the pain carries on I will definitely mention this to my doctor. I'm just taking 4 carbamazepine tablets in the mornings during the week so I can cope with doing my job, but I find I can go the rest of the day now without taking any more. Its talking and smiling when I'm at my job that brings on the jaw pain. When I'm at home in the afternoons I can give my jaw a rest, except when I'm eating! Let me know how it goes

I didn't feel any more pain! I did go to a 3rd session (He suggested it) I can now eat, drink, talk, sleep & lay down! Impossible before. 

I'm so fearful of getting the pain back. (Once you've had it you wouldn't wish it on anyone)

I am weening off of Carbamazapine. !/2 tablet 200 mg at night. I still take the 800 mg of turmeric in the morning. It's natural so it's ok. He also suggested I change my eating habits & eat nutritiously. 

I went on you tube to find out more about that. I'm trying to stay more natural, no flour, sugar or gluten. 

Your insurance company usually doesn't pay for it. (My visits were under $300 total. Save the insurance company big money. My surgery was set for February 6th, I canceled because it was so successful!

I hope you get total relief also. It didn't stop totally the 1st time but by the end of the 2nd visit it was gone!

Hi Marlene I would love to get in touch with you, I have had tn for 11 years and counting... I think it would be great to chat with someone who suffers like I do... are u on fb? If u are pls find me

Crystal riekert 

Hello Marlene first let me apologize about my grammar lol. Going forward my. Other was just diagnosed with this terrible disease. They put her on tegrotal and she is like a zombie right now but I think it is helping her slightly. My question to you is I have been trying to get in touch with neurosurgeons about getting her surgery and they are saying she needs to try the medicines first. Do you know how long about they want to wait until surgery is an option. Thank you for your time and sympathy.