I have always told everyone that everythying happens for a reason both good and bad. Then when i got TN. even to this day, i havent been able to find the reason for this horrible pain im in every day. Ive even yelled at god asking him why with no answer. Im still looking for the good in this bad disease. I feel like my whole life is gone & im just here to run my kids from one place to another which should be good to spend more time with them but they dont “get” that im in pain all of the time & act like normal kids fighting and aruging bout everything with just me to try to stop it. Then everyone else gets home & they dont understand why im in tears having to deal with my own kids. All i want in life now is to have a day with no pain or people around me who do understand what i have to do, even if it should be easy for everyone, is not easy for me. I try to keep smiling & still try to b positive as i always have been. & try to keep my head up. I do this because i dont want everyone i meet to know im in pain & try to do the same thing @ home. It just doesnt work. Any advise would b great!!

Hi Melissa, living with TN is hard enough with the horrendous pain and side effects from the meds, but if you are having to hide your pain 24/7 that takes a huge physical and emotional toll!
First of all I feel it’s sooooo important to have a doctor you can call when your meds aren’t working, to either increase OR change OR add a med. if your current meds aren’t working it might be time to change or increase the dose.
( I am currently going through this, it sucks!)
You also now need to find all the info you can on TN that’s reader friendly for your family, parents kids etc put it together and have them read it, or have you explain it to them ( in the case of your kids, age appropriate info)
Those around you need to understand what you’re going through.
You can always bring your family to an appt with your neuro and have him/ her explain TN to them.

It’s so important that you have the support around you that you need.
By hiding it from everyone, you will start to feel angry. Not to mention its exhausting.

Give your family and friends the benefit of the doubt and give them a chance to understand what you’re going through so they may help you and care for you. Physically as well as emotionally.
It’s great to be positive and put on a smile to hide the pain every now and again, I do this too but I can’t do it 24/7 it’s too much.
I understand your feelings, I feel that way too a lot. In regards to losing my life as I knew it etc
Living with chronic illness is no cake walk, it’s one day at a time, one moment at a time usually for me.
You’re not doing anyone any favors by trying to hide the pain, trying too care for your kids while in pain, you need to ask for help.
I hope you find the support and help you need , you deserve it!
(((( hugs )))) Mimi

Thank u Mimi!!

1) Everything DOES happen for a reason, or more accurately, there is cause and effect in everything, so you were not wrong. Just because nobody has found the ultimate cause of TN, or your TN, does not mean it does not exist.

2) Yelling at God might make you feel better, but it's not going to help your pain. God didn't give it to you.

3) The only good thing about TN is when it's gone.

4) Just because you have TN, the rest of your responsibilities don't disappear - they just become harder to manage, so you have to ask for help.

5) Kids generally do not understand what you're going through, (many spouses and other family members too) and if you expect them to, then you're going to wait an awful long time. Try to get ONE person to understand, and that one person can be a great help to you, maybe one of your kids' grandparents.

6) I suggest you reassess your meds. Maybe your dosage needs to be increased in order to mask a greater amount of your pain. When you feel less pain, you're able to manage a lot better.

7) Maybe consider surgery.

8) TN REALLY IS the most difficult thing in the world to manage. It's important to put that into perspective. You ARE fighting the most painful thing in the world. You don't have to always smile and you don't have to always be positive - what you have to do is find a way to survive it with as little collateral damage to your family. Get home help if you can afford it, or just help with your kids. My advice is as above, and I wish it could be better than that. All the best.