Well, I must begin by saying.. last night I found this site and as I sat here and read post after post I found myself crying and moving through them as fast as I could. I was reading people's feelings and statements as if I had written them myself. I found comfort in knowing this pain I have been experiencing is real and I am NOT ALONE!
In January my husband had been so kind as to make a 2am run to 7/11 for what was an uncontrolable craving for a mango slurpee.. lol.. While he was gone I thought I'd grab some popcorn and curl up in bed. When I reached the top of the stairs I had the most EXCRUTIATING pain in my head. I lost my balance and fell down the first flight of 7 stairs. I laid there on the landing crying hysterically in the most horrific pain I'd ever experienced in my life for 15 minutes until he returned. We dropped our son with his mom and he took me to the ER. I had CT scans, MRI, blood work, urine tests, 5 injections of pain meds ( which of course did no good). We spent hours there.. My husband holding my hand as I repeatedly went into attacks of debilitating pain. I would scream and cry. I could tell by his face he only wished he could make it stop. The ER doctor there finally diagnosed me with TN. I went home that night and spent the next 8 days in bed. I was so sick and sleepy from the medication I couldn't do anything for myself. My husband spent every day helping me eat ( what I could keep down) drink, take pills, bathe, and get to the bathroom. I felt horrible about life. I knew at that moment.. I didnt want to live like this forever.
5 monthes, 15+ ER visits, 30+ IVs, $60,000 in medical bills and still no relief. I am currently on 1200mg of Tegretol and 900mg Neurontin a day.. I feel no relief from it. I'm dizzy on a daily basis, I fall over often. I can not drive, I can not take care of my 4yr old alone.. I can not be trusted to cook or use knives.. I feel useless and the medicine isn't giving me the relief to outweight the side effects it gives me. When I was little and people asked me what I wanted to be when I grew up, all I ever said was " I want to be a mommy." Now that I am... i'm useless. I HATE it.. it's as if someone was drafted to play quarterback in the NFL and then had to be demoted to towel boy... All I want is a chance to be normal again. I wasn't able to play in the snow with my son this year, teach him how to ride his bike, push him on the swings at the park.. instead I sat and was a spectator at things I've waited my whole life to do. *cries* This is truly a nightmare. My family tries as hard as they can to be there for me, but I can feel it weighing on them all.. especially my husband. Multiple times a day I complain of pain, it has disrupted our ENTIRE lives. I look at him and think to myself.. perhaps he'd be better off without me. He didnt ask for this. This is NOT what he signed up for. I feel guilty every single day for my sickness..
I hope to find some people on here who I can talk to about pain and find some friends who have true understanding for this horrific disease. I pray for all who suffer from this. May you all find relief and remember to remember everyday that there is people out there who feel that way too.
OMG I am soooo sorry that you are feeling this way, and not feeling any relief from your meds. Just keep your head up and know that you have to keep looking for the treatment that is "right" for you. I know exactly what you mean when you were talking about the first time you saw this site and just looking at everyones symptoms/feelings and feeling like you wrote them yourself. This is exactly how I felt. I can tell you one thing, that by being here it has helped my emotionally SO MUCH its also nice to talk to people who can truely understand what you are going through (hard to find). Hang in there, and dont be afraid to talk about whatever you want. If you look at my disscussions you will see that if I am feeling somthing and want support/advise or just to vent I just write about it. We understand, and are here for you... I hope this helps,
Sarah♥
I am truly sorry for your pain and I empathesize with you as I am the mother of two boys (13 months and 7 years). Having a chronic pain condition is very trying on your spirit. I know there are days I feel so mad at myself because I want to do more as a mom for my boys. I feel they deserve a more of me.
Over the past four years I’ve visited numerous dentists, oral surgeons and now my GP is handling my case. I’ve had two ER visits due to extreme pain and I feel so lost sometimes. This site has helped me a lot. I feel empowered with some of the things I have learned and people’s kind words. It makes a world of difference having a place to go where people can relate to what you are going through.
Unfortunately a lot of the TN medications have side effects that can make hard to take care of yourself, let alone small children. I recall one poster said her doctor added Ritalin to her medications to help her have more energy. I do wonder if it helps?! Maybe something to think about or talk to your doctor about.
From me to you… Don’t be so hard on yourself!!! You are doing the best you can with the circumstances. I have my eldest son lie with me in bed and I rub his back… Tell him I love him. I tell him stories of when he was a baby. He loves those little moments. I try to challenge myself to do something “small” every day. The little things in life are the greatest treasures.
If you ever need to talk … Or text… My name is Teresa and my number is 803.201.1566
Sending a big, TN safe, hug your way!!
Do please consider yourself lucky in the part where you have a correct diagnosis --- some take years...... if these meds are not right for you --- discuss with doctor, ASAP --- YOU are the consumer - and there are at least 20 more meds to try...
There is the MVD operation - works best with TN1
We have a list of doctors we trust on here
If you go have a nerve damaging procedure MVD later will not be as successful
Sometimes it takes 2 MVDs -- sometimes a combo of 4 meds, sometimes have to switch docs to get one that is open to anything
The best thing you can do is learn alllll you can on here and on the website of www.fpa-support.org/
Keep posting and reading - you are headed in the right direction !
There's a lot of support here for you AND your husband, Princess. Part of that support is in a deep information archive under the "Face Pain Info" tab on our menus. From your description of your experience, you sound (understandably) depressed and anxious -- and that's also something to keep an eye on. Depression can make you more vulnerable to pain, though it is not an original "cause" of pain.
From your description so far, my instinct would be that you may be a candidate for MVD surgery. If you want to consider that option in detail, then read the surgical treatment article in our Face Pain Info cluster (directly linked from the tab). I'm available to answer other questions that may come up.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
The medications do [not] have make you feel like a zombie, so please talk to your neurologist about how you are feeling. When I have to go on my high doses of tegretol I feel just horrible and can't even think and walk around in a fog. My doctor switched me over to Trileptol which doesn't have the same effect on me and also put me on Effexor. The effexor actually helped my pain while giving me much needed energy. It also helps to relieve some of the anxiety you feel from the pain. When my meds no longer helped and my doses got so high I couldn't even drive to work anymore without falling asleep at the wheel, I had the gamma knife surgery done. Although it didn't cure my neuralgia, it did decrease my pain to a point where I could decrease my meds and start living again. There are a lot of different options out there and if you don't get lots of information and support from your doctor, shop around until you do. It usually takes a combination of different things and each person is different. Best of luck to you in your fight against this horrible disease...
I think all of us here reading your story can empathise with at least some of it. The mother bit resonates with me because I have 2 littlies aged 2 and 4 and I really feel like they miss out on things because of the (insert expletive here) TN. I am always telling the 4yo to wait when she asks me for something because I have to get up the energy most of the time to actually get up and get it for her. I can only hope that by the time she is old enough (or the 2yo) to really remember things I have this sorted somehow so she doesn't have a memory of me being seemingly lazy/not listening/grumpy from the pain :(
I bawled my eyes out at the part you wrote about wanting to be a mum and how you can't do anything now :(
I’m sorry to hear of your pain, it’s definately trial and error.
Not being able to see the disability ( apart from hanging on to your head out of sheer frustration and pain ) makes it harder also.
I’m in Australia and am finding it extremely hard even to see a neurologist, my regular
doctor won’t get involved at all so i changed doctors and she
Wont get involved either !!!
My neurologist is trialing me on a drug called ‘epilum’ which seems to work, i just have to find the right dose, i was quite tired and lethargic for the first few weeks but i’ve overcome that and i’m almost feeling normal
Good luck and know there is support x