As I sit here tonight, getting comfort from everyone else's stories and similarities to mine, I am discouraged, wondering when(or if) I will be able to get back to MY life...my family, my church, my job, my friends, my kids sports, my sense of self worth. I have been incapacited with this since it hit me cold on September 11, last month(my youngest son's 11th bday, couldn't even take him out to celebrate). I've been out on FMLA, and hospitalized due to reaction to Tegretol, and infections, and had to be switched to Neurontin(already had to up the dose, and think I need to again). My husband tells me if I can't go back to work for a while, or ever, it is what it is and we will get by. All I can do is think about bills, which adds to the stress from this awful disease. I am not done trying to find out if this is really what the Dr's are diagnosing me with is real...holding on to hope that there is something else, and can be treated and will leave me alone forever. Today, all that I could accomplish was making my bed, and heating up my sons pizza in the microwave...so frustrating! I really do find comfort in this group, and am so thankful to have come across it.
I would love to hear some different ways that you cope with this, and what it has taken from you...needing some encouragement.
So sorry to hear you haven't been able to get this under control yet. I was diagnosed in June and have success with tegretol but I know the feelings you are describing very well. Before the meds worked I was in a terrible place emotionally along with the pain. I think I was nearly having a breakdown--so fearful/anxious/panicky.Due to the pain--I was not sleeping much and was pureeing all my food. Every aspect of my life was affected. I did find that the pain had a way of forcing me to examine some emotions/issues-- parts of my life I had not dealt well with. I called on God more than I had in quite awhile. Read my Bible more-prayed more-cried more (but it really hurts to cry...) As for coping-- I tried to continue doing everything i could and just tried to remove myself from people when an attack would start up. My pain came in waves every thirty minutes or so- I do volunteer work so it is not as difficult as a "real" job would be. I also armed myself with as much information from as many sources as I could. I had a plan worked out with my doc as what to do should the pain get too bad. I called Johns Hopkins TN clinic to get advice. I think it is important to keep telling yourself this attack or flare up--will pass... I mean many of the stories we read here are worst case scenarios. A lot of people have long remissions and find meds that work well for years and years. It is such an unpredictable illness. It feels like the end of your life--but there is hope. There are many many effective meds and treatments--the key is finding one asap so that you can get back to your life. It will never be quite the same knowing TN could strike at any time--but what joy it is to appreciate and live a painfree day when it comes. It really changes your perspective about what is important-that is for sure. I will be praying you find relief SOON!!
MANY people have come though here, and dont come back here, once they find something that makes life good, or less bad with their TN.
Some like me, cannot tolerate the way the meds zapped my life and IQ.
I tried three meds, and 12 months from my first attack…I traveled to one of the top 5 neurosurgeon and had an MVD surgery.
BUT FIRST. My comfort was this site and
my first prescription of lidocaine patches for my face!! The Pain can sleep or reduce for up to 12 hours for many.
ASAP. Get THE TN. Book, STRIKING BACK. By Dr. Ken Casey. Between the book and this site, learn as much as you can. The more you learn, the faster can be remission for MANY!
Ask and read…repeat!
I am 2 years later, pain free. I hang around to help. I am in remission, I am not cured. But I’m living life now, as I’m temporarily cured.
It’s possible that I won’t have pain back for years… I turned 50, I have to keep dancing!
Hi Proverbs 31 Mom
I was diagnosed on the same exact day as you. Sept 11, my doggie’s birthdays. I also encourage you to get the book, Striking Back! Very informative. I have been so sad with all that is going on. Sometimes it feels like an out of body experience. I have always been so healthy! I went to Bible Study tonight with my daughter and they all prayed for me. I am seriously thinking about the MVD surgery, but I need to switch insurances first.
Hang in there.
Jean
Hi Tacocat
Just a brief note, I feel the same way. I cry, but it hurts to cry! Fearful, anxious and panicky describe how I feel too. Hang in there!
Jean
tacocat said:
So sorry to hear you haven’t been able to get this under control yet. I was diagnosed in June and have success with tegretol but I know the feelings you are describing very well. Before the meds worked I was in a terrible place emotionally along with the pain. I think I was nearly having a breakdown–so fearful/anxious/panicky.Due to the pain–I was not sleeping much and was pureeing all my food. Every aspect of my life was affected. I did find that the pain had a way of forcing me to examine some emotions/issues-- parts of my life I had not dealt well with. I called on God more than I had in quite awhile. Read my Bible more-prayed more-cried more (but it really hurts to cry…) As for coping-- I tried to continue doing everything i could and just tried to remove myself from people when an attack would start up. My pain came in waves every thirty minutes or so- I do volunteer work so it is not as difficult as a “real” job would be. I also armed myself with as much information from as many sources as I could. I had a plan worked out with my doc as what to do should the pain get too bad. I called Johns Hopkins TN clinic to get advice. I think it is important to keep telling yourself this attack or flare up–will pass… I mean many of the stories we read here are worst case scenarios. A lot of people have long remissions and find meds that work well for years and years. It is such an unpredictable illness. It feels like the end of your life–but there is hope. There are many many effective meds and treatments–the key is finding one asap so that you can get back to your life. It will never be quite the same knowing TN could strike at any time–but what joy it is to appreciate and live a painfree day when it comes. It really changes your perspective about what is important-that is for sure. I will be praying you find relief SOON!!
Hi honey. I’ve had this for 3 years I’m now off work at the moment trying steroid injections. They r having a mild effect I think. I’m just beginning to reduce medication after 3 weeks. Keep hope there r options. With love Helen x
Thank you all for your kind words of encouragement! I know it will just take time for the Dr.'s to get the right meds for me, and hopefully will make it somewhat more bearable. It is working, for the most part for the TN1, but I have had NO relief from the ATN...it feels like my cheekbone is being drilled in to, and burns to the point that it goes numb, and then feels sometimes like my cheek is having spasms, and the pressure, UGHH! The meds are making me feel like an idiot most of the time. I can be in the middle of telling my husband or kids something, and then I have what my kids like to call "the dog from the movie, "Up" moment". I guess it's kind of funny when you think about it, something to laugh about through this is good.
You are not alone, so many of us have felt this way, me included! I was diagnosed in Jan. 2013, I had been misdiagnosed since spring of 2010. I tried multiple meds, was allergic to some, simply couldn’t tolerate others. Topical meds worked best because of no side effects. This summer I decided that MVD was the best option for me. I had an MVD in Aug by Dr Ken Casey, with excellent results so far. I have bilateral TN, so may need the other side done some day, although right now I am on no meds and able to use ketamine/keto/lido cream for the rare moments I do have pain.
My faith has grown so much through this journey. I have prayed endlessly and I watch Pastor Rick Warrens sermons online and go to church. Without my family and my faith I don’t know how I would have gotten through my darkest days. The weeks leading up to my surgery, I prayed for God to give me a sense of calmness and peace because I was pretty scared. Looking back, I know he did because I didn’t go running out of that hospital:)
Rest when you can, research as much as you can, or have somebody research for you. Knowledge is power, there are a lot of options out there to try. Praying you find something that works for you soon!!!
We are all in this together and we are definately here for you :)
TN can be horribly dehabilitating...I too have been struggling trying to keep mine in control (whatever that means). I was diagnosed Dec 2011 and what a rollercoaster it has been! Normal doesn't exsist for us anymore so every good month, week, day, or minute we have without an attack is HUGE!!! I too tend to focus heavily on the worst times and what I am missing out on or can't do anymore. This only makes it worse. I found a quote that I try to live by: "Always bring your own Sunshine".
Helen, most insurance companies will cover it, if you had had TN for more tha 6 months and tried multiple meds without relief. My neurologist wasn’t neccessarily pro MVD but I was, so I scheduled an appt with Dr Casey, my neurosurgeon, on my own.
It seems you have a great supportive family.And great faith in god.Try to keep all those positive thoughts in the front.TN is horrible ,but you can find relief.Keep pushing your Drs.and searching for your best option.God bless you.Don
proverbs 31 mom said:
Thank you all for your kind words of encouragement! I know it will just take time for the Dr.'s to get the right meds for me, and hopefully will make it somewhat more bearable. It is working, for the most part for the TN1, but I have had NO relief from the ATN...it feels like my cheekbone is being drilled in to, and burns to the point that it goes numb, and then feels sometimes like my cheek is having spasms, and the pressure, UGHH! The meds are making me feel like an idiot most of the time. I can be in the middle of telling my husband or kids something, and then I have what my kids like to call "the dog from the movie, "Up" moment". I guess it's kind of funny when you think about it, something to laugh about through this is good.
Oh Helen, I didn’t realize you are in the UK. I’ve seen some of your posts, can’t imagine how hard it would be to try and teach with this disease. Hope things go well for you on Wed. Let us know how it goes.
Helen said:
Thanks Kathy. I’m in the UK so its different here. I’m seeing the neurologist for the first time on wed. X