I am new here and very glad I found this group! I hope you are all well (circumstances considered).
Now that my odyssey seems to have ended and I finally seem to have found the right doctor, the medication is more less working and my live starts resembling that of a normal person again I find myself wondering what happens next. Is that it? My doctors says that an operation is not an option for me, so does this mean I will be on mind-numbing medication that harms my brain and liver for the rest of live? Will I never again wake up in the morning without pain? Will I never again be able to eat normally? Will I ever again just be without pain? Sometimes I am so sick of it!
Do I hope for a miracle or just accept the situation and try to make the best of it?
Sorry for whining a bit .-)
Did any of you go through this phase? How do you deal and keep up hope?
I believe we all have your exact thoughts, on good days accept, bad days, grrrr! It is for whatever reason the card we have been dealt. Even on good days there is anxiety but I try to just appreciate the good ones, have had TN 7 plus years, you can live and keep on, but frustration and your thoughts are normal with this. I just never want TN to win, it does somedays, but I refuse to stop living!
Welcome Deanna,
In my opinion and experience, living with TN is a little bit of acceptance and a little bit of hope.
No one knows what to expect, as we all have unique journies with TN.
Not enough is really known about TN to predict what the future holds.
I initially had bilateral TN for 9 months. I’m so thankful my doctor at the time (2002) said that after several weeks pain free he wanted me to try and wean down the meds, I did and the pain on both sides went into remission. 8 years for one side, 10 years for the other.
I was naive back then, I didn’t know it could come back…I’m glad I didn’t know.
Why is an operation not an option for you? Just curious.
Pain control is so important, I find we’re all really hard on ourselves, me included. We need to focus on our emotional health as much as the pain.
I certainly understand your thoughts and feelings.
One day at a time, and I’m learning not to look too far ahead, this helps.
Sharing here on this site has been a huge help, I’m very grateful to this community.
Big (( hugs )) Mimi
At first I did a lot of research trying to figure out what I had. This was more of an exercise of futility. My family doctor knew nothing of my symptoms (no fault there since GN is so rare).
After 3 years of trying different medicines I finally had a cocktail that seemed to reduce my pain, only reduce it mind you. I was left feeling like a zombie.
I had no choice but to accept the situation. It isn't like you have a choice in the matter.
I was at a point of just giving up, take the drugs until they stopped working in hopes of new studies, and breakthroughs in medicine.
My wife kept pushing and pushing to find a solution. We went to several Neurologists, to no avail.
Once I got into the pain clinic, one of the doctors there recommended that I see a specific Neurosurgeon. He wasn't available for several months as he was just moving into Ottawa.
At this time for the first time I had serious hope.
It was that Neurosurgeon that diagnosed me properly. It was that Neurosurgeon that performed my MVD.
My question for you is, do they know how much this is affecting you? If they believe you are under control with the meds, then you would not be a candidate for surgery.
You need to let them know how much pain you are in, don't try to be brave about it. Tell the truth.
My wife always came with me. She was able to help in telling the dr's how much it was affecting us.
It's hard when the neurosurgeon tells you they can't help, anything they do will make it worse. I had that happen to me only a short few weeks ago. You definitely get a lot of mixed emotions. At least I did.
The only thing I can say is, do as much as you can. The pain may be never ending but you only get one shot at life so you try and make it as fulfilling as possible. We (my family and I) decided that we have to accept that this as a permanent part of life but we still have to live. So when I can't go places because I am in too much pain, they try and accept that it ok for them to go and not feel guilty about it. And I try and do as much as I can with them, even through the pain.
And even though the doctors cannot do anything beyond medication and pain management, I still have a trace of hope that someday down the line, maybe they will make a medical breakthrough and there will be a cure.
So for now, I accept this as permanent as best I can, live each day as best I can and hope that eventually we will either get the pain under control without being a zombie or find a cure.
I would get 2nd opinion on MVD surgery…I traveled out of state for my best chance … Many do…look under doctors tab and see who really specializes in this…
This is rare and progressive… I wanted best chance for a few years without meds if possible …many meds eventually stop working…it’s a game nobody wants to play
Keep reading, learning, asking here, …repeat!
Topical prescription lidocaine patches or cream allow many to lower meds!
The more you know…the more options you can choose from…the more pain free or pain reduced time is possible!
It is a mixture of patience, hope, and acceptance. Before you accept the no surgery deal make sure you get a few opinions from different doctors. It is a roller coaster ride do to this especially after being told no, but one Nero surgeon might be more knowledgable or have so new technic up their sleeve. When you do this make sure you are seeing doctors that are very knowledgable with TN and have done the surgery on several patients with TN a day.
Most TN patients can go on to an MVD surgery or nerve blockers. There is a small percentage and I do mean small were this not possible. You want to make sure you are not in this small group before trying to accept it. I’ve seen several doctors to see if surgical options were an option for my self. Each time it was a no had different feelings. The first ones I just felt like okay let’s try again with a different doctor, towards the last doctor that said no it was heartbreaking and very up setting. It is an everyday trial of accepting okay I have TN and another chronic illness, same days are great some days not so much. In any case make sure you really are not able to surgical options before hanging up towel for that.
I hope this helps you a little, and you have a great day that is pain free.
We are all different and have to do what we must to survive this "thing" we have been confronted with. Personally, I would not have survived mentally or physically if I had not had Hope. I also went through the phase you are talking about. It brings back many deep emotions that I'm not sure I was ready to deal with. No one but those of us who have felt it, can understand this kind of pain. I had a lot of hope in the beginning when I first figured out what I had because I thought "oh, good, we know what it is now, we can do something about it". Unfortunately not the case. And i felt at every turn people were trying to crush what hope I had, Doctors, Neurologist, even people on the internet. My neurologist would get quite annoyed at me, he was the authority and did not like to be questioned. He pretty much said There is no cure, so stop looking and take your meds!! I can't explain the feeling when I think of where I would be if I had just given in, given up and did what I was told. I kept looking, and praying, a lot of praying, and I found what I believe to be the answer. I have not had TN pain since December (I've explained it on my page if you are interested). I tried at times to accept it, but I felt so trapped and claustrophobic. Hope and spending my time researching was the only things that kept me out of that deep dark hole. Of course you must do what is right for you, but if I can give you hope, I am happy to do it!
Thank you Shawnamohana for the advice! I have heard about it before and will do some research.
Bellalarke - the book sounds very interesting though it is very expensive for me to get as it is not published in my country... I bought a book about pain management a couple of month ago and it was all about how I should use this pain as chance to change my life and review my decisions and I just though: Alright I am not even able to eat a meal because of the pain and you tell me to understand it as a chance??? I've stayed away from books about pain since, but will try to find the once you recommended!
Can you get ahold of Striking Back. By dr ken Casey? Is it published in your country? I might be able to mail you one… Email me at ■■■■■■■■■■■■■■■■■■■■. Kimberly
I’m sorry but when they say surgery isn’t an option, I do not understand that. I was diagnosed on 8/26/12 and had my MVD on 4/19/2013. I absolutely refused to take no for an answer. I was on 3600mg of gabapentin 700 Tegretol, norco and Valium. Side effects of the meds were too much for me to handle a full time management position and lead a productive life. I am 34 years old and will not let this condition rule my life all though it has altered it. Fight to find the right neuro and make sure they hear you.
My MVD wasn’t all the way successful, as I am back on medication. I am, at a much lower dosage and no longer taking Tegretol. I. Glad that I have had the surgery and would do it again, if it offered even more relief. Stay in control of your Dr’s. I love mine and were truly blessed.
Hi Deanna~ Welcome. I do have the same feelings as you. I think there are different stages of this disease. I followed this group for a while without signing up. I never thought I'd be joining a support group. But what I found was that everyone here had so much in common. It gave me hope while in the thralls of pain. Hence my user name Hope. I heard stories of remissions, some short but I needed to hear it was possible.
When the meds started working enough that I wasn't crying constantly I decided to LIVE as much as possible and enjoy the ride when my pain was under control. I try to do everything I normally would do if I didn't have TN (if possible). I constantly have this self talk to keep me going. It's harder to do these things not only from the pain but the meds make me so lethargic. Get up and go anyway!
I now realize that when I'm having bad pain days, better days are ahead. I'll get through it. Like you, eating is a big deal. I can really blow it if I make a bad choice like eating a crunchy chip. Also, to give you some hope - I ate some chips the other night then was so depressed that I'd given in to that salty chip, thinking now my pain may get out of control for a while. I woke up the next morning without pain. For the first time it didn't trigger more pain. So you just never know how this strange disease will behave.
Stay in close communication with your neurologist. You will find what works.
Take good care and here's to pain free days ahead.
I have been able to order this one for 26 Dollars - it will take up to 20 days to be delivered. Thank you very much for the recommendation and the offer! Your are all so kind!
Kc Dancer Kc said:
Can you get ahold of Striking Back. By dr ken Casey? Is it published in your country? I might be able to mail you one.......... Email me at kcdancerkc@yahoo.com. Kimberly
thank you for the encouragement! I am not ready to give up yet!
Renaye said:
I'm sorry but when they say surgery isn't an option, I do not understand that. I was diagnosed on 8/26/12 and had my MVD on 4/19/2013. I absolutely refused to take no for an answer. I was on 3600mg of gabapentin 700 Tegretol, norco and Valium. Side effects of the meds were too much for me to handle a full time management position and lead a productive life. I am 34 years old and will not let this condition rule my life all though it has altered it. Fight to find the right neuro and make sure they hear you. My MVD wasn't all the way successful, as I am back on medication. I am, at a much lower dosage and no longer taking Tegretol. I. Glad that I have had the surgery and would do it again, if it offered even more relief. Stay in control of your Dr's. I love mine and were truly blessed.