I recently moved across the state to a city where I know no one but the medical care is better and the environmental conditions were extremely better. After 10 weeks the medical situations are getting great attention, but the 'mental' aspect of the move has pushed me into blinding and paralyzing panic. I'm now on 3 meds for high blood pressure, but after a recent surgery when I was under anesthetic the bp was absolutely normal. Proved to me the problem is due to panic and anxiety. Coming up on my 1 year anniversary of the diagnosis it's finally setting in that my memory issues are not going to be resolved after a 5 month attack. The meds, attacks and fear of attacks when I feel functional consume my days. So many times when I moved here the forms had 'occupation' to fill in. I've started to leave it blank. That's how I feel. No passion, goal, usefulness. Now the one things I had even on disability I am having to give up, owning a small hobby business, because I just can't grasp the numbers and paperwork anymore without getting overwhelmed. Becoming a TV addict is the only way my life has progressed other than gardening. Anti social just out of fear of people asking what I do; what do I do? I hurt. AND, I'm in month 13 of my disability review appeal with a lawyer, and the catastrophic thinking spirals out of control. What would happen if they deny it? What would I do? I have NO ONE. Can do NOTHING at this point. Trying to read positivity healing books, meditation, work with the new really great docs but it takes time to get them all up to speed especially when my old hospital refuses to release my neuro records... EEEK!
How do other people finally go about accepting their old life is over and then finding a new path?
Yes this disease tries to suck the pleasure out of your life-and some times it succeeds. All of us experience difference symptoms associated with Trigeminal Neuralgia-it can be a exhausting battle. I hope that just knowing others are going through similar situations can be helpful. Sometimes after experiencing the pain the fear of further pain can be paralyzing-and money worries and the loss of identifying yourself through your former work is REALLY depressing-but I am here as a testament that things can get better. I think your choice of gardening when you can is a great idea-find more things to take your mind off your worries-I know, easier said than done-but it is so important to do. You may want to talk to your doctor about the situation with your blood pressure meds and maybe you would be better off with a mild anti-depressant that might also help with some of the TN symptoms. I am a year out from an unsuccessful MVD surgery that I thought would solve all my TN problems-God had other plans-and a crazy sense of humor. I have been taking B12 along with my meds and it seems to have changed my symptoms from unrelenting facial shocks to bothersome facial pain-any improvement is a great help. Knowing I can tolerate the pain has really helped my outlook-just a few months ago I felt just like you-I couldn't imagine spending the rest of my life that way-so things do get better. Also-give yourself a break, congratulate yourself on being so brave and handling all of this and then take a deep breath and jump back into living. Wishing the best of everything for you.
I had to learn to lower my expectations on myself. We never can plan for the pain which can bring on depression and discouragement. Is it possible to put a bird feeder in your garden? Sitting outside enjoying the sounds of the birds in my yard bring a good deal of happiness. Many of us find peace in the quiet companionship of a pet. After my sweet dog died last year I started fostering one dog at a time for company. My current foster LOVES to cuddle which is lovely.
Hi, I’m not sure I’m the best person to respond as I’m probably after 4 years now still living in the denial stage. I still fight to hold my job even though I know deep down its not going to work long term unless something changes. I’m currently off work ill and unsure given the meds how I can do my job given I can’t remember at times what happened an hour ago and I talk and walk like I’m drunk! But if you ever need to talk I’m here as are lots of lovely people who understand. I’m afraid this isn’t a cure answer but I’m thinking of you and saying a prayer x
good morning. acceptance of this situation is difficult. acceptance does not mean giving up but rather recognizing the limitations and working within those. each day could be different. i wish you strength and wisdom to embrace your life regardless of the situation. you only go round once my friend.
If you have TN for a long time (mine 13 years) believe it or not you get used to having the "new normal." My friends know and accept my limitations - if its windy outside (more than 15 mph) I'm not leaving the house. Too much eye pain. Also I can't remember names or form words well sometimes - we can't change this. This is me. The pain I hate of course but it is also part of my new normal. After years of different medicines I've accepted I will probably always be on Lyrica and Xanax. Don't like it. It's not cancer, its not diabetes, I'm not going to die. Get up, get out, for the time being try a small does of antidepressant. Try therapy too. Exercise, volunteers, fill each day with your own happiness. Make friends. When you see some of the problems others have, it all seems like, as my mother used to say, "we all have our crosses to bear." Love, Susan
Susan, this sums it up so well. We develop (and learn to accept) a new normal. Lately I have lost my ability to spell correctly at times. Words I have always known sometimes become a challenge. I suspect that is a side effect of my increased meds which I accept because they do help so much. One of my biggest challenges has been trying to avoid pain. Stress is a big trigger and my job has been nonstop stress for several years. I stuck in there but am coming to realize we only get one life and it really was so destructive to my health. I am on a LOA trying to figure out if I can even go back. There was constant panic, anxiety and stress. My primary put me on Cymbalta which seems to help a bit. She offered Xanax which I declined but I am wondering if I should let her prescribe it to me. My stress from work was subtle bullying from mgmt. in an effort (I think) to get me to quit.
Sue Richey said:
If you have TN for a long time (mine 13 years) believe it or not you get used to having the "new normal." My friends know and accept my limitations - if its windy outside (more than 15 mph) I'm not leaving the house. Too much eye pain. Also I can't remember names or form words well sometimes - we can't change this. This is me. The pain I hate of course but it is also part of my new normal. After years of different medicines I've accepted I will probably always be on Lyrica and Xanax. Don't like it. It's not cancer, its not diabetes, I'm not going to die. Get up, get out, for the time being try a small does of antidepressant. Try therapy too. Exercise, volunteers, fill each day with your own happiness. Make friends. When you see some of the problems others have, it all seems like, as my mother used to say, "we all have our crosses to bear." Love, Susan
I am a naturally positive person and I try to stay positive. We go through many trials and tribulations with this disease. When the monster finds a new way to attack I try and find a way to combat it. I try to learn all I can and don’t close any doors that might hold an answer. Research and be an advocate for yourself. Get a support group. Accept and adapt that you have a new chapter in your life try to move forward when you can. Draw on the experience and wisdom of the members of this site and others. You are not alone!
On the disability, keep records, get the doctors records, get doctors to write statements of what it does to you. Get family and even friends to write letters on how it affects you. Those had a lot of weight with the judge’s decision, I also was lucky that the judge and there doctor that testified had researched TN and were on my side from the start. My hearing took a total of 15 minutes and had a positive decision in half that time. Good luck we are all behind you!
Vanessa, go easy on yourself! You are one gutsy lady to pick up and move to a better place like you did! TN is very hard to get used to, to find a “new normal” if there is such a thing. When we face times like this, we need to take ONE DAY at a time, when it gets really bad, make your goal to get through the morning or even the next hour, then the following hour. Hang out here a lot too because people here have been there and many of us are there still. You also need to not let yourself fall into the trap of isolating yourself-- volunteer at the dog shelter or hospital or bake for an elderly neighbor or make yourself take walks–you need to! And know that there are a whole bunch of us here who are keeping you in our thoughts and prayers. Take care!
Vanessa, I can relate to the catastrophic thinking. It is very easy to slide down that path and it spirals. TL is right that it is good to take ONE DAY at a time. Boy, have I ever learned that one. My "to do" lists used to be a mile long and I always tried to do more than I could. My mom would always tell me to slow down...well, now I do! lol I cannot say enough how much fostering dogs has been a blessing. I take in one little sweet dog at a time and love on them until we find them a home. The pace is easy for me and having a cute little pup wagging their tail first thing in the morning is wonderful to wake up to! I am actually struggling with whether to adopt my current foster as he is a Chi-Pom boy who wants nothing more than to sit in my lap or cuddle next to me (or ON me) for hours at a time. What a perfect little companion for a TN patient!!
I am new to this disease but agree that eventually you accept a new normal. You learn to do what you can when you are able. You get up every day and just try to do things. There are plenty of days you can not do anything but trying keeps you going. I will say a pray for you as I do all of us. It really does help to have people understand and be supportive.
This quote more than any others helped me to understand acceptance.
Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.--Michael J. Fox
Personally, I do not think enough attention is given to grief when it comes TN. People think grief is just when someone dies. My life changed drastically due to the TN, and it was sad, and very depressing. I have had 18 1/2 years of dealing with TN, and trust me when I say acceptance was a long process.