Hermit

General General TN & GPN (Old Site)
1

I have always enjoyed spending time at home, but have always looked forward to outings and being social. Since being diagnosed with Trigeminal Neuralgia I have become a hermit. If I have to go to an appointment, I am anxious to get back home. I have no interest in any type of shopping, going out for coffee or lunch or visiting friends. I live in a small city and I do not want anyone to see me other than family. I am embarrassed of who I am now and just have no energy, not to mention that too much talking causes pain. Today I ran into a high school friend (we are talking over 20 years ago) and she asked me if I was ok, giving me a funny look and I just cried and said 'no, I am not' and briefly explained what is going on and how these pills make me feel. I could not get home fast enough.

Is this a sign of depression or just embarrassment from the side effects of Tegritol?

2

Collette I felt the same way. Its natural to feel this way, but try to overcome it. Meet up with just one friend at first and then try to meet a couple more. Others will accept you for who you are, there is no need to feel shame because of this condition.

3

Hi Collete :I always tried to put on a strong front and even if I am depressed, I would try to hide my tears from my children. My husband only saw me crying once, that was when my older brother passed on unexpectedly. I felt embarrassed to let others seeing me cry. I do not know why, perhaps I do not want others, even my family, to think that I am weak. It is strange that I have such thoughts . There may be some inherent problems with me.
Ever since I got TN, I find it harder to hide my feelings of helplessness and fear. I still do not shed tears openly and would wipe it away secretly. Hence ,I got all my emotional support here. The members in this site understand how severe the pain is and the side effects of the medicines. I am not afraid to talk about my problems and I hear encouraging and kind words. I do not hear these words from people around me. They speak different ‘language’. When I first got this disease, I went searching for doctors myself and alone. Eventually I met a doctor who showed concern and I broke down in front of her. My tears flowed down as if a dam had given way.
You are not ok and when your friend asked, naturally you will break down. On the other hand , you do not want her to know that you are suffering , especially after many years of not seeing each other, so you have this conflicting feeling. I do not think this is the side effect of Tegritol, but rather you are depressed.
I was a hermit initially, but I like outings and socializing . I enjoyed company, to talk about my disease and other trivial things. This disease is getting too much for me to handle alone, I want listening ears. I do not expect my friends to do anything drastic, simply listen quietly to my woes will help a lot. Therefore, I ventured out doing volunteer work, meeting more people. I still have good days and bad days, but I am happier. Try to go out with friends if you are slightly better and eventually you will have a handful of them who understand you. This illness
will not go away easily, so you need to make some changes in your life.
Best regards,
Your friend

4

Hi Collete,
It is me again. We tend to feel depressed with this disease, so it is good to have some good friends. As talking , eating and other activity that people take for granted can cause us pain, we find it hard to socialize. But we have to try to overcome this. This is difficult , I know . Therefore , go out shopping, meeting people when you have good days, or slightly good days. Do you have any good days?
Very sorry about my earlier rantings, it seems that I do not have a good head on my shoulder any more.:frowning:

Blessings,

Your friend,
Seow

5

Hi Collete-

I don't know a whole lot about these afflictions yet, but it does seem very depressing. Both from the diseases and the meds. We just want relief! Talking or hearing people talk will "send me."

I am sooo thankful for this site, this community of people to interact with. If it wasn't for this I'd be going crazy I'm sure.

I am new to this place, and have only been dealing with this junk on my face for a year. I worked ten hour days five days a week, was super busy helping the homeless with church family, and have seven grown kids with almost 15 grandchildrren. But now here I sit.

I believe with the help of those who have suffered before us, we will find a way to manage and maybe make a "life" again. Please be encouraged!

At least that's how I see it today...

6

Thanks everyone. I have a lot of good friends that come and visit me but I don't like running into people and explaining why I look all dopey and not my smiley self. I am not good at hiding my feelings and when I start telling them what is wrong and even think about the pain, I cry. By the way the woman I ran into from high school, we have been friends since graduation, but we just have not seen each other in about a year.

7

It's tegretol and pain. I was glad when the Dr. had to take me off it for liver problems. They put me on pain meds, and still my mind is so much clearer and I am more alert, more energy on these than on anti-epileptics. I am a hermit too, due to multiple other conditions, but I feel so bad for those who are on tegretol and still having pain.

Bless you, Sheila

8

Sheila,

does it work better? do you mind if i ask what it is i hate feeling dopey on the tegertol

thanks,

jess

Sheila W. said:

It's tegretol and pain. I was glad when the Dr. had to take me off it for liver problems. They put me on pain meds, and still my mind is so much clearer and I am more alert, more energy on these than on anti-epileptics. I am a hermit too, due to multiple other conditions, but I feel so bad for those who are on tegretol and still having pain.

Bless you, Sheila

9

I have never spent so much time in my bedroom ever! Part of it is I fear something happening while OUT that will trigger a Stab attack..and that i won't be able to get home....I also had a friend pop over and see me 2 weeks ago, as I kinda of checked out of my social life.....and when I saw her look at me I saw her eyes/face, and i realized that i frightened her. I look like I hurt cuz I do.

10

Jess, The Dr. put me on a 12 hour morphine and an instant release for breakthrough pain. He put me on 100 mg. but it was way too strong, so i asked him for 15 mg. capsules, so I can take 1 or 2 if my pain is not as bad, or 3 or 4 if it's more severe. you are groggy with it for the first couple of weeks, then your body adjusts and it just neutralizes the pain. I don't think the few weeks of grogginess on this stuff was as bad as the grogginess of anti-seizure meds. I am blessed to have found a doc to help with these meds. I suffered for 20 years in fanatical little town that didn't believe in pain meds except for after surgery or during cancer.

I know so many people can't even get the weakest of the strong pain meds, a Tylenol 3 with codeine. Also, morphine has fewer side effects compared to Lortab (hydrocodone) or Vicodin (oxycodone). Also less damage to your liver, because the others have Tylenol (acetaminophen) in them. After a few years of me taking lots of regular Tylenol for lupus pain, I got some liver damage. It shows up again quickly if I use Tylenol for a few days, or anti-seizure meds or more than 2 or 3 prescriptions. Yes there's no comparison in how much better it works compared to Tegretol and other drug combinations.

I know people fear addiction, but there's a difference between addiction and dependence. Also, having such severe pain for so long damaged my heart, so dependence is safer than dying from side effects of pain. Most literature states that if opiate pain medicine is given to people in severe chronic pain in the right doses, less than 5% get high or addicted, because it just neutralizes the pain. I have never felt "high" from any meds, I don't know what it feels like, because my brain needs pain control so much that the meds do that and only that.

If your Dr. isn't willing to help you that way, there are so many different anti-seizure meds, and other meds like muscle relaxants, creams and Tylenol 3 (weaker pain med) that might work. There are so many different combinations and dosages to keep trying, so don't give up. Some people here take anxiety meds with other meds, and not for anxiety, but because those meds work on nerve endings.

There are also many discussions that include many tips of things people do at home/work to lower the pain level some, so if you try a few of them, you might get a lot of relief. Here's one such discussion.

http://www.livingwithtn.org/forum/topics/share-your-little-helps-with
Important message for all: Also realize that there are various causes of TN, so if you can find the right cause and seek treatment for the cause, you could get a cure. Also, many of us have periods of remission, even years of remission. So don't give up hope! If a Dr. ever says "there's nothing that can be done", that just means HE has reached the limit of his knowledge. There are other doctors and various alternatives you can still look into.
So...Hang in there...like this...
11

I think everyone on this site with constant severe pain feels the same way. You expressed it better than I could.

Sheila

Yvette said:

I have never spent so much time in my bedroom ever! Part of it is I fear something happening while OUT that will trigger a Stab attack..and that i won't be able to get home....I also had a friend pop over and see me 2 weeks ago, as I kinda of checked out of my social life.....and when I saw her look at me I saw her eyes/face, and i realized that i frightened her. I look like I hurt cuz I do.