I am having a little trouble putting this in words, so please be paitient if this is not well organized.
I have been very lucky in my history with TN (type 1). In October of last year I had my first set of attacks. Went to two dentists and an endodontist. All were honest and indicated no tooth probelm and refused (despite my begging) to remove any teeth. A friend suggested it might be "microfractures" and to use Sensodyne toothpaste. This actually seemed to work for two to three months, then the pain came back (much worse than before). Same dentist referred me to a pain specialist who referred me to a neurologist. I have now started the dance of trying different medication to see what work (Gralise, Gabapentine and now Oxycarbazepine). Each worked inititally and has started to fail. Now looking into MVD. I live in Houston with many excellent doctors. All told I have had excellent medical advice and on a road for treatment within 6 mos. of initial onset. Like I said lucky (except for the whole TN thing).
What I was hoping from this support group was some help on the practicalities of living day to day with the pain. My symptoms seem to flare up when I eat or talk. I am 39 and a lawyer with three young children (6,4 and 1). Do you tell your coworkers? Hard to run a meeting when you have to take uncomfortable pauses and grab your face. Lawyers are expected to talk. Do you tell your children? Hard to read a bedtime story without speaking. How do you integrate your family in the process? Wife (also a lawyer) wants to "fix" the problem when all you want to do is hide in a dark closet when the pain is bad.
Hi lex, welcome to the group.
If your TN flares up while you eat or talk you might want to consider increasing your dose of your current medication. The medications we take need time to build in our systems to reach a therapeutic level. At a therapeutic dose you should no longer be experiencing those flare ups. Finding the right med, combo of meds and dose is such a dance as you’ve already experienced, sadly.
Many people switch meds without giving the initial med time to build and work. Each of us responds differently to different doses. I hope you and your prescribing doctor are working at getting you to a therapeutic level by slowly increasing.
As for work, it depends I guess. I’m a very open person and had no problem sharing with management about my condition but only did so when it interfered with my job which wasn’t very often luckily.
While working occasionally I’d have a TN attack which made me squint in pain or reach for my face, I never realized the pain “showed” as I was so used to it. A co worker witnessing my pain would then ask, and then I’d share and explain TN.
This didn’t happen often as my TN was well managed for many years with Tegretol.
Your children are quite young, I think it’s good to explain age appropriately "that Daddy gets “owies” in his face sometimes which happens when daddy talks or eats, it feels like a surprise when it comes and is very owie"
Kids are very resilient. My youngest daughter who is now 15, was 3 or 4 when I was diagnosed and has no memory of me being in pain that year before I went into remission. No memory of it at all. My oldest was 9 at the time and she remembers my pain and struggle and the limits imposed when Mommy had an owie face and couldn’t play etc.
As for your wife, it is sooooo difficult to watch someone you love cry out in pain or see a silent tear fall out of your spouses eye when the pain hits and there’s nothing you can do. They feel soooo helpless and just want to do whatever it takes to help you.
The reality is there isn’t much they can do.
Really helpful if you have your wife read a little about TN so you both are on the same page of what you are dealing with. Knowledge is power and it erases misconceptions one might have about the course of TN etc.
Communication is key between my husband and I, it’s what has helped us get through this journey. It’s not easy, the communication falters sometimes and that’s life, but we pick up and move on and try again.
All the best Lex, glad you’ve joined us, it helps to be able to chat with others who know what you’re going through.
Mimi
hiya lex, although i'm only 15 living with TN (type !) I completely understand how you feel about living day to day in pain. As i'm only 15, i'm still in full time education, and like you, my TN worsens when I talk. You can imagine how funny this was at first to other people when I would be talking in class to just suddenly stop and grab my face, one of my teachers actually sent me to the behavioural office because he thought it was just messing about. At this time I had refused to tell anyone but close friends as I just wanted to keep things normal. I think you should tell your co-workers what is going on, and how your condition is effecting you, as soon as I told my school and classmates, everyone was able to give me allowances. I'm sure that if you explained to your co-workers about your condition they would make allowances too! I would recommended doing a powerpoint on it, that way your co-workers will all get the same information and you'll be there to answer questions if they have any..(just try to hold the pain, while doing so) you'd be surprised how your family can adapt to it, mine didn't even understand what was really happening till I described how much it was effecting me. I hope this helps you, and you are feeling better soon!
I went from TN to MVD within a year…I flew to the top dog who has been doing MVD. Longer than anyone… I hated meds that bad…TN is progressive, regardless of meds, … So while waiting for MVD… Discovered here topical meds!!!
call neuro and ask to call in for you…Lidoderm face patches, face cream, and lidocaine mouthwash.
You can keep meds at lower dose till you find a …more than great MVD surgeon!
If done within first 3 years …best odds. But may have to have one more someday…tis not a cure…
Please do not have any nerve damaging procedures like gamma or cyber knife for best MVD Odds also!
Read Striking Back… By dr. Ken Casey. My top neuro surgeon lol!
Has many great ideas and parts for loved ones to read…only update really is since published, MVD rates are even better now.
I’m 50, and at 5% pain post MVD 2 years. I am a therapist and have to talk for a living!
Wife ordered Striking Back a couple days ago. Plan on some couple reading.
Kc Dancer Kc said:
I went from TN to MVD within a year.....I flew to the top dog who has been doing MVD. Longer than anyone..... I hated meds that bad.....TN is progressive, regardless of meds, ....... So while waiting for MVD.... Discovered here topical meds!!!
call neuro and ask to call in for you....Lidoderm face patches, face cream, and lidocaine mouthwash.
You can keep meds at lower dose till you find a ......more than great MVD surgeon!
If done within first 3 years ...best odds. But may have to have one more someday.....tis not a cure.....
Please do not have any nerve damaging procedures like gamma or cyber knife for best MVD Odds also!
Read Striking Back...... By dr. Ken Casey. My top neuro surgeon lol!
Has many great ideas and parts for loved ones to read.....only update really is since published, MVD rates are even better now.
I'm 50, and at 5% pain post MVD 2 years. I am a therapist and have to talk for a living!