Hi everyone. I am a 39 year old wife and mother from NZ. I was diagnosed with TN1 in 2013 and have had little to no luck with medications. Am currently in the system to see a neurosurgeon after exhausting all other avenues. My MRI’s have always been normal and my biggest fear is that the surgeon will turn me away.
I have 2 lovely daughters entering their teens and I feel this condition is robbing them of their mum. The toll on my husband has been huge and I sometimes feel like a hinderance on my family.
Before this I was an outgoing, energetic teacher who loved to do things with friends and family. Now I’m lucky if I manage the 15 hours I’m contracted to do and I’m constantly having to cancel social engagements.
I currently get through my days on slow release tramadol and top up with normal tramadol when it’s really bad. Certainly not ideal but it’s the only pain relief I’ve found that lets me function.
Would love to hear from other people in this situation!
Hi Kgm,
I worked in NZ for a period of some 18 months, beautiful place, I enjoyed my time there immensely to the point I perhaps should have never of left. I worked as an osteopath in Papakura, and treated TN patients with success, bearing in mind the insurance which you folk have, have you tried a physical therapist? There are reasons you should, especially in the absence of MRI findings.
I like ish the fact you mention the bearing on your family, this is so often not articulated, and the ‘illness’ has a real impact on family members often by the sufferer, without thought. Wish there was more support for family members forgotten or certainly not articulated. TY.
Regards, and wishing you all the best.
The family side of things is what I find the hardest. It’s hard when it’s not an outwardly obvious condition to ask other parents and friends to help out. And because it’s so unpredictable, there’s no point organising family to help because I never know when I’ll need it!
Thanks for your advice. Over the last three years I have tried osteopaths, chiropractors, physiotherapists as well as the usual medication combinations. Unfortunately nothing has helped me.
All I can do is pull up my big girls pants and try and do as much as I can each day. And when the bad days come, I just try and remember that my children will have other memories of me when they get older, not just be writhing in bed!
Do you really miss NZ, especially now as it’s earthquake time?!
Thanks for sharing your story.
We do have a few things in common.
I also used to teach (undergraduate students) until the facial pain became unbearable and I also have children: two teens and two primary school aged children.
At first, my MRI scans also came back clear… until I demanded to see a neurosurgeon. He immediately spotted two vascular compressions on my trigeminal nerve and now I will be undergoing MVD on 12 December (you can read my very long story under the category ‘New Member Introductions’).
My TN had also become refractory to medication after many years of suffering and experimenting with various anticonvulsants.
In sum, be your own advocate, ask for an MRI with contrast - in case your previous one was a regular MRI - and demand a referral to an expert neurosurgeon in your area. Only an expert can tell you the truth about your condition, when you are ready to accept it.
As for the impact TN has on the people in our immediate environment, yes, that’s a tough one. I often feel guilty too. It’s hard to come to terms with losing your former self. Everyone keeps talking about how you have to learn how to live with the ‘new normal’, but it’s up to you to actually do it…
I am trying to talk about things with my husband and the kids as much as I can, but sometimes I really struggle with fatigue (due to the meds) and negative thoughts. My neurologist referred me to a pain clinic, where I learned how to manage my pain (cognitive behaviour therapy), which was useful.
Best wishes!
Hi. Yes, I remember reading your introduction and thinking we shared some similarities.
The neurosurgeon that I was given at the hospital had only done 2 MVD’s so I have been transferred to a neurosurgeon whose speciality these are. In NZ there are only 3 neurosurgeons who specialise in this surgery, so you can imagine my joy when one of them is in my home town! Before I see him he has ordered a new MRI with contrast, so hopefully we’re on the right track.
You are so right about being your own advocate, but man it’s tiring!
Hi Kgm-
Work to stay positive and invest the time to become your own best advocate (easier said than done, I know). 
Like many people here, I intimately know the hell of enduring TN pain. I had TN for 3 1/2 years - and saw dozens of doctors, dentists, surgeons, pain specialists, therapists, healers (yeah, don’t ask) and more. All this in the hopes of finding a solution that didn’t entail surgery. My case was the subject of Grand Rounds: when a team of doctors and health professionals from around the country are assembled to consult a case, review medical discovery and treatment of a condition. Luckily, I live in Northeast US and there are a number of qualified and experienced neurosurgeons specializing in TN, but I was still hesitant to jump into any kind of surgical procedure (I’d never had surgery before). So when I finally had my MVD surgery on March 3rd of this year it wasn’t from a lack of exploring multiple alternatives.
I had 3 MRIs over the course of 3 1/2 years (1st without contrast the 2nd with contrast) and I share in your frustration when the results are “inconclusive” or worse yet when doctors claiming there wasn’t evidence of blood vessel compression of the TN nerve. I met/interviewed 3 neurosurgeons in person, spoke to another on the phone to gather information, research surgery options, and continue my due diligence. Eventually, I spoke to about 10 people who were MVD patients (and those who opted not to have the surgery).
The neurosurgeon I selected (who performs several MVDs each month for many years) requested a MRI FIESTA (chips and salsa not included, haha!)…it’s an acronym standing for Fast Imaging Employing STeady-state Acquisition: FIESTA. As I understand, it provided a clearer roadmap for the neurosurgeon to pinpoint the location of the nerve compressions. BTW, I’ve been pain free since my MVD surgery.
TN can turn you into a version of yourself that you don’t recognize. Years of constant pain, uncertainty, frustration, not to mention sleep deprivation has a funny (not funny) way of suffocating and eroding one’s personality. But you can and will preserve.
Apologies for the long post. I don’t usually reply, but once I started I found it difficult to stop. I hope you found this somewhat helpful.
You have my best wishes for good luck!
DTS
Hi kgm,
We are about the same age and I too am a wife and mom. I feel Your pain 
and it makes me so sad that someone else has to go thru it. I have had issues with medication ( severe side effects)and at the end of August I had a m.v.d. I was not prepared for how intense the recovery would be. It did relieve the electric pain from my nose and cheek and allowed me to go outside in the wind again but I also have atypical that effects my lower teeth and it did nothing for that pain at all. I still don’t regret the surgery though and I’m confident that had I not had atypical TN it would have been 100% successful.
If it suggested by your neurosurgeon then I reccomend taking the chance.
I can relate to the feelings of being a burden on your family. I think being a mom intensifies it. We think a mom should do this or be there for that and when we can’t we disappoint ourselves even more. We just have to find the moments we are grateful for and make sure we let those around us know how much they are appreciated.
You are not alone on this journey. I hope you get an appointment with the surgeon soon. (((Hugs)))
Ps…all my MRI’s were clear too until I had one done at the hospital where my surgeon was and they found 2 compressions.
Thanks so much for your reply. It’s always so reassuring to hear of others who have come out the other side successfully! Surgery has never even crossed my mind as an option, but after 3 years of this I’m be begging them to operate!
So, fingers crossed for an MRI that shows something conclusive.
Man that gives me hope! How old are your kids? Mine are 9 and 12 and are very lovely about the whole thing but I worry about the long term effect. Maybe it’s just mummy guilt, I don’t even know anymore!
My son is 12. The hardest thing is when I have to back out of a family activity because I’m particularly messed up that day. I miss when just my son and I would just spur of the moment go on an adventure or go into the city and now I’m too nervous to go alone in case my vision goes or I become disoriented ( yay side effects from meds) or the pain becomes so bad and I’m far from home. It sucks. But we read together and watch movies and YouTube. he is so patient:)
There are so many procedures to help with TN and a neurosurgeon will help find what’s best for you. Because I am so young(40…lol) mine suggested an MVD since it would potentially leave me pain free the longest. Do your research,the book Striking Back was so helpful to me. It gave me the knowledge to be my own advocate.
Keep me posted when you see the neurosurgeon. If you have any questions there are so many people here who can answer. Your not alone:)
(((Hugs)))
My wife, and mother of our two wonderful teenage daughters, has TN. She worries a great deal about what they might be missing out on due to their moms pain, but they have learned wonderful lessons about compassion, patience, and unconditional love.
She has been dealing with TN for 6-7 years now. She did have MVD surgery a few years ago. Worked brilliantly for 8 months, but she went in for some dental work and the pain came back with a vengeance. Right now though her pain is very, very manageable; she can sleep, talk, fully function, and even usually eat without much pain. She is not on pain medication. Hard to know with TN what is working, but something has certainly changed recently. Here is what she has done prior to the pain receding dramatically. Again, hard to know what of these, if any, made the big difference:
- We have long suspected a virus could be attacking her nerve, especially a strand of herpes virus. She recently got on a strong anti-viral to deal with that.
- Stress is an enormous trigger. She has made major lifestyle changes to remove the stressors that can be removed, and is learning to not worry so much about the stressors out of her control.
- She pays very, very close attention to what she eats. If she starts feeling any pain when eating a particular food, she immediately stops eating that, and eats something else that does not cause pain.
- About a month ago she did scrambler therapy. After a session the pain would be greatly reduced, but would slowly come back. We thought the therapy was not going to end up having much of an impact, but since returning home from the clinic the pain has continued to be much, much reduced. If the pain does come back, one of the first things we’ll do is go in for a couple of ‘tune up’ sessions.
- Lastly, we keep our faith. Prayer is a big part of our calm and peace of mind.
We do not believe there is any one source of TN. Anything irritating the T nerve can cause it. That’s why one thing works for one person, but not another. We keep working at it. It’s been 6 years that have sometimes been very, very challenging. We’re in a good place right now though, and very grateful for it! MVD is a major decision. If you can, it might be worth it to try as many other options as you can first. With scrambler therapy for example, the more time that goes by since doing it, the more we believe it may have been a big help. However, if you get MVD and the doctor uses any kind of a metal plug/plate, you will no longer be eligible for scrambler. If you do try scrambler, it is expensive, doesn’t work for everyone, and it is very, very important you go to the best practitioner out there (this is true for everything though, especially MVD!).
It’s like your telling my story! The vision going is the worst. I totally didn’t expect it and when it first happened everyone freaked out. Now I’ve learnt now to panic but it can be so annoying. Thankfully it’s just my left side…the pain side…so I have one good eye left!
Lots of people have recommended that book, so I think I’ll order it. Got to be prepared for when I finally see the right neurosurgeon!
Thanks for your encouragement, it really has made me feel less like a freak.
Thanks for your response. So reassuring to hear that there are other families going through this with grace and a positive attitude. Faith is a massive part of our day to day life and I honestly don’t know how people get through this without it. If this is our new reality, then I know God will give us the strength to embrace it, just as He has so many times before.
What is ‘scrambler therapy’!? Certainly doesn’t sound like something NZ would have available!!
Heya, im from Papakura, Auckland NZ. I was diagnosed with TN in 2007 at the age of 26yrs old. At the time of was told to be the youngest in NZ with 6 other sufferers. To date, i have now met almost 100 other sufferers via facebook and met 6-7 sufferers face to face over lunch/dinner. I have been apart of the TNnME Group since starting up in 2012, which if you’d like to look up and read about website is www.tnnme.com. I was a fit young female who had always longed for a family of my own one day but feel that TN had robbed me of that privilege. I was dating before TN started but it got too much for me as I was still trying to get my grips on TN. I am happy to have the support of not only my dear mother and 2 sisters but my aunties, uncles, cousins/in laws and now my nieces/nephews who have grown up to know that their aunty lagi is really sick, has TN and loves the color ‘teal’ lol. I was diagnosed 13-15 days by my GP/Dentist/Oral Practitioner since my 1st occurrence with the tn pains. 4 months later i met with my neurologist at Auckland Hosp who confirmed their findings of TN and organised for me to meet with Neurosurgeon. I had 3 MRIs and 1CT Scan. Neurosurgeon suggested I have MVD but i was so scared i held off and wanted to try other alternatives. I tried accupuncture, homeopathy and of samoan descent to samoa to try natural remedies and even saw a witch doctor there and in fiji. When all failed, i gave in after 3 years to MVD. I had MVD on Nov 2, 2010 and admit it was the best decision I ever made. I was painfree/drugfree for 1 year and 11 mths. It sadly came back in Sept 2012 and have since gone back on Tegretol and Gab. Ive been told to have MVD again but refusing as my theory ‘if it didnt work the first time, what makes this time different’. Pain though is alot better and manageble on the 2 meds. You will also find a NZ Support Group on Facebook. Whereabouts in NZ are you?? There are alot of neurosurgeons here, smaller areas will have 1 or 2 but in the bigger areas like auckland, chc and wellington there are a few who expertise in MVD/Balloon Compressions. My one had 30 yrs experiences and had on dealt with 3 MVDs and to this day he is still my lifesaver. Hope your having a painfree day/week
Regarding Scrambler Therapy, here’s the principle behind it: We do know that pain is the brains interpretation of certain signals received from nerves. Drugs try to alter the signal the nerve is sending. Scrambler therapy lets the nerve send the signal, but trains the brain to reinterpret that signal differently. Instead of interpreting the signal as pain, it interprets it as “everything good here”. As a result, the brain does not create the sensation of pain, even though the nerve continue to send the same signal it always has.
As with many non-traditional medicines, debate swirls. Both the Mayo clinic and John Hopkins here in the States are now using this therapy. I know of several people for whom it has worked absolute wonders. Others have said it seemed to have no effect. In fact while we were there another woman was also receiving the treatment for TN, and her results were much less favorable. As I mentioned, my wife went for two weeks. She would go in the morning with severe pain, and come out of the session with pain at a 1 or 2. Next morning the pain would be back, though not as severe. Gradually during the week the pain did decrease, though it was very much an up and down affair. At the end she was certainly not at a zero. However, on average she was probably down to a 2-3.
It is important to be on no meds when the therapy starts, as the treatment requires the nerve to be sending the ‘pain’ signal in its entirety. As plane travel tends to bring on pain, my wife went back on tegretol pre-emptively for the flight home. She stayed on the tegretol for several weeks. We truly thought that the treatments effects were too temporary, and her relief was coming from being back on meds. However, two weeks ago she went back off the meds and the pain has not returned, other than when she eats certain foods or talks too much (my wife is very social and verbose, it’s hard for her not to talk). Having said that, she is also working on reducing her stress levels, which we have also noticed makes a tremendous difference.
Regarding scrambler therapy, a couple of thoughts. The upside is there are zero negative side effects. If it does not work the only thing you are left with is (quite a bit) less in your wallet, and the potential disappointment of another dead end. I am not sure if this is available in NZ, but my very strong recommendation is to go to someone who knows what they are doing. A lot of times chiropractors like to get a hold of the hardware, but really don’t know what they are doing. As a result there is no benefit, and the patient comes away thinking the procedure was a dud, when in reality a skilled practitioner could actually have help tremendously.
~Sean
A fellow NZer! I have yet to meet a fellow sufferer here! I’m in Wellington and unfortunately the only other neurosurgeon who is experienced in this surgery upped and moved to Melbourne for the big money! There are other surgeons here who will do it but have only done a handful of them, so I’m holding out for the top dog. Turns out he goes to my church which was a nice surprise! I am so sorry to hear that your TN returned. That is my worst fear…to go through all this and then be back at square one. And in terms of a family of your own, there are some men out there who are gems and have the capacity to take people like us on! And my girls have developed huge tolerance and compassion through this. What is the NZ Facebook page? I’ve searched but can’t find it… my husband is from papatoetoe so we’re in Auckland frequently. Next time I’ll look you up!