I was just diagnosed two days ago so understandably I'm confused, angry, sad and trying to deal with all these meds. Einstein said, "The single most important decision a human being makes in their lifetime is whether The Universe is friendly or not." I believe the Universe is friendly and that things happen FOR us not To us so I'm on the hunt for evidence that TN is a good thing. Where have you found it or could imagine that it lies?
I have had TN for 5 years, since I was 35. I honestly don’t think there is one good thing about the disease itself. However, having TN has given me a whole new Outlook on life. I value what really should be valued and forget about what doesn’t!! My kids and husband are at the top of my valued list!! I spend most of my good days with them and enjoy the time I have. I have found a compassion inside for people that I never had, and I personally have a drive to succeed. I have a reason to fight hard!! I want to be successful and accomplish my dreams!! And TN has made me prove what kind of person I really am. I hope you can find some positive outcome of this awful disease!! So glad you are here!! ((HUGS))
I totally agree with Lisa! I have gained compassion I never would have understood as a non-pain person. I take better care of myself. Things I took for granted, I now really appreciate. An important part of life is an Antagonist; I never had one until I got TN. I do believe the universe is friendly but also indifferent, or maybe even neutral. I've gone way past the denial, anger, bargaining stage and have reached the acceptance stage but with a condition. I accept TN because I can't change it, but I do everything I can do to address it and control it.
I'm very sorry to hear of your diagnosis, and you are entitled to feel whatever comes up. I had a lot of hate for the endodontist who harmed me and cause the damage that resulted in my condition. Lots of hate for the legal system that protected him from litigation even though he was negligent and aggressive and took no responsibility. I'm over that and I feel so much better to let it go. TN is absolutely gruesome and as far as I know, permanent. So we will find ways to deal with it and we learn how to be patient from all the waiting for the next appt, the next med, etc. And good things will always continue to happen.
Thank you Lisa and Colleen. I love hearing how it's helped you to grow your compassion.
Lisa26 said:
I have had TN for 5 years, since I was 35. I honestly don't think there is one good thing about the disease itself. However, having TN has given me a whole new Outlook on life. I value what really should be valued and forget about what doesn't!! My kids and husband are at the top of my valued list!! I spend most of my good days with them and enjoy the time I have. I have found a compassion inside for people that I never had, and I personally have a drive to succeed. I have a reason to fight hard!! I want to be successful and accomplish my dreams!! And TN has made me prove what kind of person I really am. I hope you can find some positive outcome of this awful disease!! So glad you are here!! ((HUGS))
TN gave me a whole set of people in person and on line that I would never had met or shared ups and downs with.
TN made me so proactive to get off meds and get right on to surgery - I researched HARD for a year on here and on the TN Assoc. website. I kept plodding along, drugged and depressed, but still putting one foot in front of the other most days.
I was already compassionate towards invisible illnesses - because of my son and because I'm a social worker - but it gave me new depth not to take anything for granted.
It gave me the drive to keep coming on here long after I've healed to help others - I may be in remission for a month - 5 years - 10 years - so I still walk with those coming through these doors because only 12 per 100,000 of us diagnosed per year - and only a HANDFUL of experts worldwide -
Welcome! If you can- pick up the book "STRIKING BACK" by Dr. Ken Casey - it is our fav. book here - written with a HUGE amount of TN info. The face pain tab above is very comprehensive too.
Keep Posting!
I think it makes me a better nurse. I now know what it's like to be in excrutiating pain (far worse than childbearing!), what it's like to need medication when I hated meds before, what it's like to be a patient in the health system, and what it's like to have something that most people never seem to have heard of. And definitely each time I have had to wait in the ER or be admitted onto a ward what it's like to be that patient sitting there (for example the last time I hadn't eaten for almost 24 hours by the time the hospital gave me something to eat and I threw it straight back up again, nutrition of patients will be high on my list!). It also highlights what I can do better for my patients and what my workplace does do really well (in pediatrics) compared to adult health. I will never dismiss a patient's pain that's for sure. All this started only in March this year and I have already been to the ER 3 times and admitted twice (one last week). By the time my new referrals will have been done I will of been under the care of about 7 teams of doctors so I have seen an array of different personalities ... I also will have no problems advocating for my patients as I have had to advocate for myself! :)
Good discussion!
I am sorry for you and any /everyone who has TN
The only thing that I could possibly think of would be my pain threshold
I used to be one big girl when it came to Pain. (well Girls are better with pain..)
I was a wuss
I have had this disease 14 long long long ....years. I was 28 fit and taking on the world..
Last year I prolaped L5S1 (Back injury) and had really bad Sciatica Very painful (still stuffed).
The Docs Physio etc expected more out of me when they examined the MRI's of my back (it was a bad prolaps) But the pain was a 5 on the pain scale where if I did not have TN I would have been on my back the whole time yelling profanities and it would be an 11 out of 10.
So I suppose thats an Up side. Pain threshold...
Next would be I eat much healthier. NO junk food for me. at all.
And I suppose I would care much more for someone in real pain but I feel I would have before.
Simon
Christine,
I agree with you things happen for us not to us.
Here’s my take;
The Good:
TN has made me realize that I need to be my own advocate for my health, that not all doctors have knowledge of all medical conditions and it has made me pro active and helped me find my voice.
TN has brought my family even closer together, I’ve Realized that I have an incredible husband who is so supportive and understanding. My daughters aged 19 & 14 are compassionate and supportive I’m so lucky. They were so young when my TN first came to be a part of our lives and I worried endlessly about the effect on them but I can say it has made them and us more appreciative of the good days and more compassionate towards others.
TN has made me realize That I am surrounded by good friends willing to help when needed, although they don’t understand the level of pain and isolation I feel at times, they call or visit from time to time or are there to cook meals or chauffeur my kids when I ask.
I just need to learn to ask more.
TN has given me time to reflect on life and make the most of the good days and appreciate them when I have them. It has given me a strength I never knew I had.
My advice to you being newly diagnosed, is to research and learn as much as you can about TN. It affects us all differently and every doctor, neurologist has a different understanding of TN and treatments.
Don’t be afraid to question your doctors or suggest a treatment.
But most importantly DO NOT live with pain, find pain management as quickly as possible, have a plan in place with your doctor or neurologist and make sure they are available to you if you need an increase in pain management.
Have HOPE that this too shall pass…it is that which keeps me going.
All the best to you, ((( hugs ))) Mimi
Thanks, Mimi. I so appreciate your perspective.
Thank you all for you wisdom and perspective. No more junk food for me and I’ll pick up Ken Casey’s book as soon as I can.
Kc Dancer Kc said:
TN gave me a whole set of people in person and on line that I would never had met or shared ups and downs with.
TN made me so proactive to get off meds and get right on to surgery - I researched HARD for a year on here and on the TN Assoc. website. I kept plodding along, drugged and depressed, but still putting one foot in front of the other most days.
I was already compassionate towards invisible illnesses - because of my son and because I'm a social worker - but it gave me new depth not to take anything for granted.
It gave me the drive to keep coming on here long after I've healed to help others - I may be in remission for a month - 5 years - 10 years - so I still walk with those coming through these doors because only 12 per 100,000 of us diagnosed per year - and only a HANDFUL of experts worldwide -
Welcome! If you can- pick up the book "STRIKING BACK" by Dr. Ken Casey - it is our fav. book here - written with a HUGE amount of TN info. The face pain tab above is very comprehensive too.
Keep Posting!
Shindig,
there’s nothing positive about losing quality of life, you’re right, in fact it sucks!
But when I’m writhing in pain, and feeling hopeless, when I find myself so low, so down I don’t recognize myself, I reach and find the things I am grateful for. And I remind myself that there is always hope, if I dont believe that, I have nothing! ((( hugs )))
I also dont have anything good to say about this. If I had to , I guess I learned who my true friends are and who isnt.
Wendy
Shindig - you said it so perfectly -- that was the point where I booked my MVD. I could not go out and dance - and I was so depressed I became part of the bedding!
Losing quality of life does suck, no doubt about that. But I do look at things more positively and I think I am a better person. I better appreciate what is important in life...my wife, children, friends, nature, etc. I am calmer...but that may be because the meds turn me into a zombie most days! I try so hard to hide the pain and "act normal" when I'm around my wife. She wants to help and gets frustrated that there is nothing she can do. I guess that's a sign of having married a wonderful person. Anyway, good luck to all in finding a treatment plan that brings an acceptable level of pain and side effects.
I am sorry you have to have this condition it can be very frustraing I think it is a test to see how we respond to it. Never give up we are surviors we have to be. I think we can be an example to others and hopefully share our compassion and our ability to survive with other so that they can be strong also. One good thing is Gabapentin makes most people tired it has made me hyper and a little ODC like my house is deaner than normal LOL and that is a good think I thind the only time I get tired is when my TN is acting up., What medicine are you on and how bad is your TN what branch is it in the V1,2,3 if you have not already ordered the book striking back it has lots of good information in it about all the treatment meds. look it up on the internet and buy it it helps a lot. Good luck hope you have pain free day
You also try to find a good neurologist who knows a lot about Tn and that you like him. I have gone through 3 of them. Before you schedule an appointment ask them just how many paitients the doctor has treated with TN. You also should probably have an MRI to rule out anything else going on in your brain but find a good neurologist and dicuss it with them. Your are on Tegratol did they explain to you that you need to have blood work done every 3-6 months to make sure that the tegratol is not effecting your liver it is very hard on your liver.
I know that I should write something uplifting but I can't. I have learned many lessons from my pre tn life. Compassion, that having the smallest pain is still pain, that invisible diseases are still there though you can't see them etc, that my family means everything, also that my husband is an amazing man. But having TN is not a learning experience for me. Suffering is suffering. It is not a noble thing. It is what it is. I was a nice person before tn, I am a nice person after. Sorry I just can't see this thing as a gift. If others do then I wish them well. I wish everyone well. But to me it just is. I don't think the universe is friendly or not. The universe is the universe, I don't believe it has any motive. I understand it means the way we perceive the universe is supposed to be our own reality. But to me it is a neutral thing. I really don't need horrible pain to teach me how to be a better human being. My personal reality is "I have a disease that I need to manage the pain, how am I going to do this? What can I do? Where can I get help? What tools are available to me?" Though the funny thing is I hope that my doctors are compassionate and help and not hinder the treatment. Perhaps this is what I am learning. That there are people who will understand and those who won't and I may be the catalyst for them learning something good. If I am, I would gladly give up the job. Or I may just be having a bad day.
Shindig, I’m so sorry to read of your health situation, what’s the next step? Biopsy? Surgical removal? What’s the long term prognosis? If you dont mind my asking?Sorry about all the questions, I just don’t know a lot about what you’re going through. I did google and read up a little on your condition the other day.
You asked a few questions in reply to my note to you, I can only reiterate that we must try to find “things” anything to help us get through the nightmare of TN .
I have been off work for almost a year, dizzy and imbalanced (cant drive, or walk very far without falling over) and my tn has worsened.
I 'm only 40 yrs old, my days are spent lying on my couch,I’ve missed a new job opportunity that I am/was very passionate about and I have know idea what tomorrow brings, as each day comes and goes I become more and more discouraged. I was always very active, very social and very “glass half full kinda girl” this has changed me completely.
I refuse to believe this is how it will be forever!!! Like KC, I’ve reached my point…I’m currently looking into MVD…
It breaks my heart that so many of us are existing in pain & despair.
In the end I try my best to find things to lift me up out of the darkness, and remind myself of things I have to be grateful for. It keeps me sane and gives me hope.
Tkal,
TN was NO gift, but as a result of having TN I learned/ was reminded of a few things about myself and others, so if I have to find good, that’s what it is. Yes I would have gladly learned/ been reminded of those things another way…unfortunately I didn’t have a choice.
(( hugs )) to all, goodnight, Mimi
It's Hard to be positive when you are in pain. I do really good when my pain is controlled. But when I have new symptoms and I have to get stronger medicine..... Well~ I turn into a different person and I just don't care. I get mean and unfriendly. So my point is your perspective changes frequently, as with this TN, it constantly changes. At least mine has within the last year or so. I am normally pretty positive person but when the pain hits anything can happen. . . I am only human.
Hi Christine
My name is Cris and I have had TN for almost 13 months now...I guess I am still a newbie; but it sure feels like it has been 'forever'! I have always been a strong woman and have weathered MANY trials that anyone from the age of 24 - 41 should not have to go through (from a sadistic wife torturing husband - that has been out of the pic for over 25 years) to almost loosing my son in a car accident 6 years ago. God has been so very kind to me and I truly find comfort in his Loving arms. He gave me a precious husband of 21 years and a beautiful family - I take strength in that ALOT...
...I STILL HURT AND I STILL WONDER WHY!!! - but - we have to strike a healthy balance or this disease will take the BEST of us and turn it into something that IS NOT us anymore.
I am a culinary arts instructor and it is the hardest thing this year to get up and go into the classroom everyday and face my 150 high school students...but I do it because it has been my routine for 8 years. My family is my MAIN support system; but sometimes they just dont understand what WE feel and go through and sometimes can't verbalize to anyone else but this forum.
Please don't stop coming on here and 'lettin' it all out'!! WE UNDERSTAND AND WILL TRY TO GIVE WORDS OF COMFORT when we can! You are NOT alone, kiddo! ((hugs))
Cris