Dear All, I joined this site because I have quickly realized I cannot go through TN alone. Having just been diagnosed with TN, and suffering since last fall, I already know that this pain is like no other and requires me to seek support. I keep asking "why me", I float in and out of remembering that I have a great life and love my family but the pain is so debilitating I can't imagine having a life anymore. I am a homeschool/unschool mother and I have young children, taking it easy is not an option but the pain knocks me to my knees. I read the stories of other TN sufferers who are still dealing with this after many years and I feel helpless and hopeless. I had faith this would just magically "go away" my strong, healthy body would heal itself. Now, I am terrified to lose the life and sanity I have always had. Upside, I am looking forward to getting to know all of you.
Hi Dandeloin,
I know exactly what you are feeling. I am a 2 times cancer survivor. I took on cancer head on an won. Not the same with TN. This bastard brought me to my knees. It has changed my life and outlook on everything.
I live in fear. I had MVD procedure by a renowned neurosurgeon who was the first to learn the same procedure from Dr. Jannetta. The procedure produced wonderful results for 18months, then the bastard came back with unspeakable brutality. Have been on oxcarbazepimine since. Had gamma knife 6 months ago in Boston. Pain free now, most days. I chose to count how many days of the week are good vs. bad. So far the good days outweigh the bad days. I remain hesitant to air travel. I can’t get past the phdycological hurdle of being at 30 thousand feet in the air with this terrible pain. I hope you are being treated by a very good neurosurgeon.
The mess did turn me into a veggie for a while. Tomorrow is another day.
As my wife says, at least you are still warm and vertical.
Enjoy the good days.
Sergio
hi Dandelion; welcome to the community. i am so glad you found us early on your tn journey. there are so many wonderful people here who understand just how you feel.
i would encourage you to read the book Striking Back. it talks about the symptoms, medications used and their side effects, surgical options and shares a few personal stories of tn. i have taken the book with me to appts so i can understand the medications and dosages being discussed. my husband ordered it off of Amazon.
i wish you peace on this journey and pray you will have many pain free days ahead.
HI Dandelion!
I totally understand your situation. I was diagnosed first when my husband was terminally ill, and have battled this for the last three years as an only parent with 3 kiddos now under 6. I am thankful that I have a big support structure nearby, but there are days where I ask why me all day long. I've had a really bad stretch of weeks since mid-May, and I don't know when my life will get back to something close to normal. But, based on past remissions and treatment with meds, I do know that good days are ahead. I just don't know when. Hang in there, and be persistent in finding friends who understand (and don't just try and suggest you "take it easy" or "take some advil" or "try this type of diet"). They are well-meaning, but find someone who has battled chronic pain to be on your side - they are the ones who understand and can help the most. This community here is great, as I am quickly learning. Be strong. And know that you WILL beat this thing.
Ellen
Warm welcome Dandelion,
Newly diagnosed or newer to TN, it can be overwhelming to read all the stories of long time sufferers…there’s definitely an upside to joining a community like LwTN, friendship, understanding, knowledge, support, commiseration etc However it’s really, really important to remember that although we all share similarities, our journeys with TN are unique and very different. It’s hard to find two cases alike from start to finish. So much of TN is still unknown…
Most people who find success with certain medications or procedures, tend to move on from sites like these and focus on “living” again. Luckily we have many members here with success stories who visit regularly and share their stories and in so doing, offer much needed hope.
I was diagnosed with bilateral TN at 29, two small children…after 9 months and 6-8 weeks pain controlled on medication my doctor suggested slowly weaning off the med. I did, and I then experienced 8 years remission on my right side and 10 yrs remission on my left.
( I hope this offers you some kind of hope that a lengthy remission can and does happen )
Back then I wasn’t educated about TN, when it went away, I thought it was gone for good. Imagine my surprise after all those years when it came back…
Some advice;
Pain is exhausting and debilitating, having TN isn’t just physical it’s emotional, so really important to work through the emotions and grief as they come to the surface, through communication, journaling, therapy, uplifting self help books etc there are good days and there are bad days, emotional self care is soooo important. It’s a constant effort…be kind and gentle with yourself…
Read, research and learn as much as you can so that you can make the best decisions for YOU, so important that you don’t make treatment decisions in desperation. Unfortunately we as patients often know more about TN than those treating us.
The focus should always be ( in my opinion) quality of Life & Pain management. Finding a balance can be difficult, but it is possible for many.
Be a partner with your doctor/specialists in achieving that, either by increasing your dose of medication, adding to it or trying a new one altogether. ( always with doctor approval) remembering most of the meds take time and initial side effects can minimize and/or disappear . Give meds a chance.
Hold on to HOPE, believe that life won’t always be this way , our mind is a powerful tool…have faith. Together as a group, we can get through this…
Huge ((( hugs ))) Mimi
Hi Dandelion,
Welcome to the site and a wonderful group of understanding people. I've been dealing with this for over 30 years but it only became a more constant part of my life in the past ten years or so.
You will find a lot of great information about treatment options and medications here as well as support as you go through this journey. You WILL get through it all, I promise.
Anytime you have a question, post a discussion - it's possible that someone has an answer that will help a lot of people! I'm sorry you are in pain but we are glad to have you if you must be.
Hang in there~
Cathy In MD
Hi Dandelion,
I'm relatively new to this diagnosis, too (6 months in). The most important thing I have learned from the resources on this website and the supportive, caring people here is that we are neither helpless nor hopeless. You will not lose your life or your sanity, however your life may change. Your strong, healthy body will be your ally as you find what works best to tame that pain that knocks us to our knees. For some of us, it is a certain drug, a drug combo, or a surgical procedure. One of the most difficult things is finding a doctor who either knows about TN, or is willing to learn along with you. Keep asking questions here; I have found help from many who are willing to share their experiences.
One of my daughters is homeschool/unschooling her five kids; I know exactly what that is like. It must be rough for you when you're having a bad pain day.
Hope you find some answers soon,
Rissmal
Hi Dandelion, welcome to our group, sorry it is under the circumstances of your pain. I have been a sufferer since 2010, with a period of remission, a period of no pain for 2 years following MVD surgery in 2012 and currently under attack again. I have tried to learn to be gentle with myself, to save my energy for things that really matter. Recently I enjoyed a week away with friends for a Blues festival, most nights I retired earlier than the others but still enjoyed myself immensely. You can still do the things you love, but may have to ask for and accept help from others along the way. Good luck with your treatment, and try to find something to laugh about every day.
Dear Sergio,
Thank you for sharing your story with me. It sounds like you have had to conquer so much with the cancer and now TN. I understand very little about TN, but I do understand what you mean by living in fear. There are so many things I am already second guessing because I am unsure of how my pain will set in. I am hopeful that the meds will work for me, but I have lined up a Neurologist in Boston at Mass General so I can get the best care possible. You mentioned having a good Neurosurgeon, would you recommend anyone or any particular facility?
Many Blessings to you and than you for reaching out after my post!
Sergio said:
Hi Dandeloin,
I know exactly what you are feeling. I am a 2 times cancer survivor. I took on cancer head on an won. Not the same with TN. This bastard brought me to my knees. It has changed my life and outlook on everything.
I live in fear. I had MVD procedure by a renowned neurosurgeon who was the first to learn the same procedure from Dr. Jannetta. The procedure produced wonderful results for 18months, then the bastard came back with unspeakable brutality. Have been on oxcarbazepimine since. Had gamma knife 6 months ago in Boston. Pain free now, most days. I chose to count how many days of the week are good vs. bad. So far the good days outweigh the bad days. I remain hesitant to air travel. I can't get past the phdycological hurdle of being at 30 thousand feet in the air with this terrible pain. I hope you are being treated by a very good neurosurgeon.
The mess did turn me into a veggie for a while. Tomorrow is another day.
As my wife says, at least you are still warm and vertical.
Enjoy the good days.
Sergio
Dear Patty,
Thank you for your encouraging words and prayers, there is such a feeling of peace in what you wrote. I will take your suggestion of reading the book, I have also seen it mentioned on other blogs so it must be good. This is new territory for me, but I enjoy research (thank goodness ;) though I just don't feel up to it lately. Like I mentioned to Sergio, I ma just now adjusting to the meds (Tegretol) and I am a little fuzzy and still working through finding the right dosage. On a brighter note, it is really nice to find this group of supportive people who are struggling with and trying to conquer TN everyday. I am a person of strength and faith, it is encouraging to find so many others who suffer with this but have that same strength and faith.
Many Blessings to you!
Patty said:
hi Dandelion; welcome to the community. i am so glad you found us early on your tn journey. there are so many wonderful people here who understand just how you feel.
i would encourage you to read the book Striking Back. it talks about the symptoms, medications used and their side effects, surgical options and shares a few personal stories of tn. i have taken the book with me to appts so i can understand the medications and dosages being discussed. my husband ordered it off of Amazon.
i wish you peace on this journey and pray you will have many pain free days ahead.
Ellen,
My goodness, you have been through a lot...thank you for sharing with me. I am so sorry to hear about your husband. I know you must be a strong, strong woman to raise young children on your own as well as battle TN. My heart goes out to you and I also think you must have great faith and motivation to push through those hard days. I know about the hard days, I have three young boys at home, but I have not known about the hard days very long since this just started for me last year and really kicked up in May. Something about May, like you said, made it much worse for me as well. I am hoping for better days and I know you are as well. I will take your advice to find friends who will understand and do their research rather than suggesting I "lower my stress" and "get out more", some that I know still think it's some type of headache. You're right, I WILL beat this one way or another, I am not the type of person to give up or give up the life I want to have, and you don't sound like you're giving up anytime soon either. Thank you for the words of encouragement, for welcoming me, and for sharing such a personal story.
Best to you!
eem0831 said:
HI Dandelion!
I totally understand your situation. I was diagnosed first when my husband was terminally ill, and have battled this for the last three years as an only parent with 3 kiddos now under 6. I am thankful that I have a big support structure nearby, but there are days where I ask why me all day long. I've had a really bad stretch of weeks since mid-May, and I don't know when my life will get back to something close to normal. But, based on past remissions and treatment with meds, I do know that good days are ahead. I just don't know when. Hang in there, and be persistent in finding friends who understand (and don't just try and suggest you "take it easy" or "take some advil" or "try this type of diet"). They are well-meaning, but find someone who has battled chronic pain to be on your side - they are the ones who understand and can help the most. This community here is great, as I am quickly learning. Be strong. And know that you WILL beat this thing.
Ellen
Hi Dandelion. I too was diagnosed at a young age- 27 and it’s been 5 years. I had just had my second baby and she was 8 weeks old when the pain started I also had a 3 year old son at that time too. I was already having some post-partum depression so when this started I almost lost it. I don’t know what I would’ve done without my husband. He practically took care of the baby by himself when he wasn’t working for several months until the meds started working. I hate myself and this disease for taking away almost the 1st year of my baby’s life. I feel like I was still a good mother but when I would be in great pain my husband would have to just take over with both the kids. My neurologist put me on Lamotrigine after trying many other meds. This has worked well for me.
I know it’s so hard but please don’t let this get the best of you. Since being diagnosed, I have had a few remissions with one of them lasting a year. Even though it may not feel like it during a horrible attack you will have days where you feel good too. It’s weird but last month (May) was also a bad time for me. I had a week where I was in so much pain that I thought I would never come out of it. After that week I started feeling better and haven’t had any of the horrid attacks since. I still have a few shocks a day but that’s so much better than the agony of before. I wish you the best and keep us updated on how you are.
Dear Dandelion.
This must be a hard balance to maintain. I never really wanted kids, and having TN, I am so relieved to be just me. My greatest help has somehow been that I never wanted this to identify me. Only last year, after 15 years, I started telling my friends, because this has become a real handicap. Of course, they don't understand, but I am also glad they don't, because I do want them to see me as Tine, not as a sick person. Some of them think I am quite the drama queen, but OK.
I cannot offer any concrete advice except for seeking out a therapist. If you are really struggling, they can help you feel differently towards it. In the end, the pain is just as much you as your thoughts or your personality, and to feel better, I think part of it is to not let it take over, but to accept that it is there and is going to be for a long time.
I keep refusing to see this as a sickness. Rather, I see it as a condition that I have, like glaucoma or deafness. Like them, it is a dsability
...or can be. (I was thrown out of my reply. Part of my disability is that I cannot use a computer, so I have to write with a less than optimal e-reader). It has become a disability for me, so there is a long list of stuff I cannot or will not do. A deaf person can go to a concert, but will not really get a lot out of it (I presume). But they don't know until they've been!
Maybe it is a stupid allegory, but that's how I see it. It helps me to stay focussed on the things I can still do, and on my identity outside of TN. A littl worse than a bad hair day, but a little better than a wheel chair. Sergio's wife is right! I am still warm and vertical. It is important for me to remember that.
It’s such a truly awful thing to experience. Nothing like the pain!! How do you start a discussion on here please?
Many thanks emma
Hi Dandelion,
Welcome to our supportive group here and I know you will find an abundance of both support and knowledge. Mimi mentioned that many that have had successful treatments go on to live their lives. I'm very fortunate to be one of those persons but I am determined to stick with this group to offer my support and possibly hope. I've answered the "why me" question somewhat in that I believe that I was dealt this hand in life so that I might support others on their journey.
Here's my story (in brief). I was diagnosed with TN just 4 days after the onset of my first horrific symptoms. That was back in Janurary 2013, and I was 44 years old with two young daughters and fortunately a very supportive husband. I suffered symptoms (type 1) for a long 9 months. Aside form my primary doctor, I went through 2 neurologists, 1 pain doctor and 3 neurosurgeons during that time and was eventually put on the maximum dose of first Trileptal and then after having hallucinogen-like "episodes" started on Tegretol XR until I maxed out on that. At the end of those 9 months, in October 2013, I had my MVD surgery by Dr. Ken Casey. He is the author of the Striking Back book (which you should read) and is well known as an expert in TN. I was not impressed with my neurosurgeons that were local so I traveled to Dr. Casey to do my surgery. That was 20 months ago and I remain 100% pain free and med free. I do have my life back and am so grateful for that. I also know that there is no cure for TN at this time so even though I'm pain free, and even though it could even last for the rest of my days, I know that whatever caused my TN (aside from the vessel compressions - the genetic factor) is still with me.
I would advise you to learn all that you can. You mentioned that you were good at research. Fortunately, I'm a trained journalist so I did what I know best and found out everything I could. You have to partner with your physicians but you have to be your own advocate. I had opinions across the board from my doctors and I had to decide what was best for me. This group helped me to do that. I received awesome information and also awesome support on my worst days. I am so grateful for this group. Also, don't be afraid to take a leap of faith. If you want to take the surgical route, choose one of the top TN surgeons out there and then once you have made up your mind and feel that this is right, take that leap of faith and do it. I was afraid of surgery initially but I found that I was even more afraid of living out my life with TN and med symptoms or without having that courage to have taken that leap. I will be praying for you.