My name is Lia, I'm 27 from Vancouver Canada, I was diagnosed at 18, have had periods of attacks and long periods of remission ( 3 years one time!) This year has been my worst year ever. I've had to go on disability at work and just getting out of the house seems like a feat these last few weeks.
I find that one of the hardest things for me, is people look at me sometimes like "I cried wolf". They hear that I have this condition and that it is apparently very hard for me, but then look, I look and seem fine. It feels sometimes like I wish so badly I could just give them my pain during an attack for two seconds, just so they knew what I battle every day.
My boss is so great, and I appreciate him, but he too doesn't seem to get it. People are so used to basing their opinions and judgements on what they can see, and TN is invisible.
I try to be strong and not let other people see when I am in pain, because honestly it just makes most people so uncomfortable. But then when I try to explain how hard things are for me right now, it doesn't add up for them.
Then I ask myself, where is the balance, I try to be so strong but that makes people not take it seriously, should I just be screaming all the time? The pain that I've learned to live with would make most people scream and I'm sure it is the same for all of you.
Anyways I am rambling. I'm just having such a hard time.
I have MVD surgery booked with a Dr. Kaufmann in Winnipeg on March 8 and I dont know how I am going to make it that long sometimes.
one more question - are mornings so much worse for anyone else? My mornings are horrific but it seems like I have less pain the afternoon.
I have a similar story to yours. 18 when shocks first started, managed fine (without meds) for 10 years, am 28 now. Huge flare up last year at which point I started medication (gabapentin). Over the past year it has settled down a bit but still worse at times compared to the last 10 years. Gabapentin didn't work that great but Oxcarbazepine does.
I've been to 4 different neurologists, all have recommended to try medication first before resorting to surgery. If you havent tried Oxcarbazepine (Trileptal) you should give that a shot. Many people get relief and are able to manage okay. I am stubborn and try to manage without meds but I take them when I need to.
Given that you are so young like me, it might be worth giving surgery a long hard thought before getting it done.
I noticed you snowboard. In my case in high school I had taken a few bad falls on the slopes where I must have injured my neck. I think my initial pain might be partially related to that in some way. In fact when my TN first started, I got a lot of relief from upper cervical chiropractic adjustments.
150 - 300 mg per day. I only take it maybe twice a week on days when the pain gets too much. But I usually try to take Gabapentin first as that is a drug said to have less side effects. But I deal with pain everyday on varying levels from a scale of 2 - 7 out of 10.
When I had my huge flare up in 2014, I was taking almost 2 Grams (2000 MG) of Gabapentin per day, 7 days a week. I do think many people go through bad flare ups and never taper off the medicine to see if the pain subsides by itself.
I am stubborn because I don't like taking the medicine (but as a result the tradeoff is that I have to suffer in my daily living). If I have many decades of life left, I would rather take as little medicine now, and hold out until either they bring new and more effective medicine to market, or they find a cure / better solution. My fear is to start taking heavy doses of meds now, and then have them become ineffective in a few years. (I have no data to support that this actually happens, but as Red has mentioned it might happen to maybe about half of TN patients). It may just be an issue of using meds for a while, then tapering off for a while and giving the body a break.
Of course there is a balance that needs to be found. That is something that I have been thinking about lately. Maybe it makes sense to increase the dosing to the point where I can get back to a more 'normal' day to day living. And just take it day by day, week by week.
If I was 70 years old, then my approach to taking meds / and or surgery would be different. Since I am young, I have to play the long term game, depending on my level of pain. Now if your pain is unbearable and you can't function at all, then of course it makes sense to take larger doses of medicine or even consider surgery. It's a tricky balance to find. Sometimes it's like you have to pick your poison. There is no one best solution.
I have suffered with Atypical trigeminal neuralgia for 8 years now. I too am on disability. I look fine on the outside so people perhaps think I am faking an illness. Nothing we can do about that. I also suffered with extreme tinnitus. So the two have really made me feel so isolated and alone. I had mvd one month ago and I don't notice much difference, except i'm practically deaf in the ear that they went in behind. I hope my hearing comes back. I have heard that ATN is more difficult to treat with mvd than the regular tn. I hope you get some relief and know that you are not alone.
All that being said, I am single I don't have a GF or someone that I live with or see everyday. If you have a significant other, I can see how it can be much tougher.
That is something that I have started thinking about, because that probably requires a more stable 'daily living' rather than the roller coaster ride of crazy pain every hour or every day.
So, if you have a significant other, and depending on what stage of your life you are in, it might make sense to get more aggressive in terms of medicine / treatment.
Of course, my decision to take less medicine may not be the correct one. Sometimes I think I am just sitting around in no-mans's land and pushing off starting the next stage of my life - settling down. That would require more stability in terms of pain management.
Hi knowpain, sure. During my last relationship of 6 years I had a bad spell of TN. At first my boyfriend at the time was great, he ran around and changed all the lights to dimmers because bright light was a trigger for me. He bought me an expensive electric toothbrush that was supposed to not trigger me as much. All in all so thoughtful.
Then it just changed. He started spending less and less time at home. I felt incredibly alone. I think it got to be too much for him, and as well, I think i dealt with the pain worse back then - I was more angry and frustrated and bitter and I took it out on him, at a time that our relationship wasn’t doing well to begin with. I’m much more zen now - not that I don’t want to throat punch TN every second still, but Ive learned what emotions are constructive and which ones aren’t.
My current boyfriend and I had only been dating for 5 months before this latest attack of TN, the worst in my life. He has been an absolute rock. He sits up with me every two hours at night when I wake up with searing pain. He knows exactly when to hold me and stroke my head and when to tell me to get it together.
Of course I worry that he will get tired of caring for me. I think it’s important during your good periods to get showered, do your hair and get out of the house. remind them and yourself who you are despite this condition, as hard as that is. Make sure they know how wonderful you think they are. I also think giving them a break is important. For example my mom is staying with me right now because TN is so bad it’s hard to care for myself at times, and though I really still wanted my boyfriend around, I sent him to some guy friends to drink beer and play Fifa and sleep in.
Also recognize that not everyone has the caregiver gene and that doesn’t make them a bad person.
Me and my husband got married young at 18 so we have now been together 11 years. We are truly best friends. This has been super hard to deal with because I now feel I’m not a good wife anymore sometimes. Always in pain never wanting to do anything. My husband is super supportive and reminds me everyday how loved and how strong I am. Of course in the back of my mind I worry he will get sick of it one day. I think he takes a special kind of person to love and deal with someone with chronic pain. Don’t worry you will find someone who loves you for you. Best wishes
I have worse pain in the morning when I first get up. Always around my eye. I take a small dose of Imitrex (sumatriptan) and then lay down with ice on my eye for a bit until it's under control.
As for social isolation, I just keep to myself most of the time because I don't feel well most of the time. I don't go out much unless I go alone or with my son, and I don't seek a romantic relationship at all. Kinda sux.
Hope your MVD surgery is successful! I'm hoping to get gamma knife surgery soon.
The social aspect is very tough. I wish you the best of luck and I hope you can find those rare and wonderful people who can see past our pain, and anger, and the burdens we sometimes are. They may be few but they are out there. Being 25 with constant ATN pain for more than a year has put serious strain on all my relationships, but the important ones made it through. Hoping you have some pain free days coming.
Hi knowpain, sure. During my last relationship of 6 years I had a bad spell of TN. At first my boyfriend at the time was great, he ran around and changed all the lights to dimmers because bright light was a trigger for me. He bought me an expensive electric toothbrush that was supposed to not trigger me as much. All in all so thoughtful.
Then it just changed. He started spending less and less time at home. I felt incredibly alone. I think it got to be too much for him, and as well, I think i dealt with the pain worse back then - I was more angry and frustrated and bitter and I took it out on him, at a time that our relationship wasn't doing well to begin with. I'm much more zen now - not that I don't want to throat punch TN every second still, but Ive learned what emotions are constructive and which ones aren't.
My current boyfriend and I had only been dating for 5 months before this latest attack of TN, the worst in my life. He has been an absolute rock. He sits up with me every two hours at night when I wake up with searing pain. He knows exactly when to hold me and stroke my head and when to tell me to get it together. Of course I worry that he will get tired of caring for me. I think it's important during your good periods to get showered, do your hair and get out of the house. remind them and yourself who you are despite this condition, as hard as that is. Make sure they know how wonderful you think they are. I also think giving them a break is important. For example my mom is staying with me right now because TN is so bad it's hard to care for myself at times, and though I really still wanted my boyfriend around, I sent him to some guy friends to drink beer and play Fifa and sleep in.
Also recognize that not everyone has the caregiver gene and that doesn't make them a bad person.
Me and my husband got married young at 18 so we have now been together 11 years. We are truly best friends. This has been super hard to deal with because I now feel I'm not a good wife anymore sometimes. Always in pain never wanting to do anything. My husband is super supportive and reminds me everyday how loved and how strong I am. Of course in the back of my mind I worry he will get sick of it one day. I think he takes a special kind of person to love and deal with someone with chronic pain. Don't worry you will find someone who loves you for you. Best wishes
I was just crying to my husband last night about how I'm not a good wife because I can't be there for him (this round has been going on for six weeks). He told me that it makes no sense to even think that way. He said if he were sick, I wouldn't think he is a bad husband, and he's right.
I try to get him to go out and enjoy his off time with friends when I'm having a flare up. I also try to push myself some when I'm hurting but not in horrible pain. I especially try to shower! as much as possible, even when I'm hurting and exhausted. I don't want him to start associating me with grossness!
But yeah, we aren't bad wives. We're sick wives.
Beth
Jennifer Muir said:
Me and my husband got married young at 18 so we have now been together 11 years. We are truly best friends. This has been super hard to deal with because I now feel I'm not a good wife anymore sometimes. Always in pain never wanting to do anything. My husband is super supportive and reminds me everyday how loved and how strong I am. Of course in the back of my mind I worry he will get sick of it one day. I think he takes a special kind of person to love and deal with someone with chronic pain. Don't worry you will find someone who loves you for you. Best wishes
Speaking of social isolation, I was mentioning in another thread about my best friend who is a physician. Him and i sort of grew up together and not a single week has passed by that we havnt spoken. We went to university together also and shared a lot of memories. I remember my ex gf yelling at me one time to "JUST GO AND MARRY HIM!" lol. We are that close.
Anyways, i have a hard time convincing him of TN! he hasnt heard a lot about it and he only has seen one patient with TN. Also he knows i suffer from an anxiety disorder and he is just chalking it up to my anxiety. When i tell him about a recent attack he just says: were you being anxious before it happened??!
Anyways, my point is when you cant convince your best friend who is actually a doctor then there is not much to be expected from others.