Hi, all!! I really haven't posted in a little bit...I'm kind of disappointed in myself. My goal this year was to remain positive...to not let TN rule my life. But, it's just not that easy. TN is so dang frustrating. The pain, the meds, the exhaustion, the questions, the lifestyle changes... I finally felt like I was getting somewhere, but I had to back down on my Lyrica dosage because my face, feet, and legs were swelling. I was on 600mg, now I'm down to 400mg. I am also taking 50mg of tramadol twice a day. I have been in quite a bit of pain the last 4 days...today being the worst. I called my Dr. today wanting to see if I should increase the tramadol and to see about the lidocaine patches, but I had to leave a message. I will have to call again tomorrow. I can't sleep at night...last night I was up cleaning. I have had one decent nights sleep in about 4 weeks. I keep waking up with no idea where I am. My husband found me in the kids playroom one night sleeping in a chair. I have no idea how I ended up there. I'm just not myself anymore. I'm exhausted, I'm easily agitated, if I sit down I end up dozing off which isn't good when you are taking care of your kids (they wake me up), I'm crazy forgetful and have started stuttering...I just don't have it together anymore. Quite honestly it really makes me mad. Maybe once we get the meds figured out things will fall into place...I really hope so.
I don't understand -- do you live in the US?
I call my doctor's nurse - she asks the doctor - and the doctor calls in the prescription almost always the same day!
You can only be positive here really in spurts when you feel the worst of the pain. I also got a tip on here that was almost as great as the patches --
I told my neuro that I could not consentrate, had no energy, no focus - so he gave me some ADHD med so that I could have my brain back and could function around the house - dishes/laundry stuff that never got done anymore--I just wanted to take them as needed - not every day -
He said many of his patients with epilepsy take ritalin or adderall or something because they are really bogged down by these side effects of the seizure meds we take
Do you have more than one doctor in your life that would call in the patches ASAP???
I feel your pain! Your description of what your life has become is so close to mine aswell! Being exhausted and easily agitated are two that fit me well. Getting the meds figured out has been a long road for me too. I am at the end of the gabapentin so the next one he wants to try is the Lyrica.....but I have heard so many have had bad side effects I am reluctant to try it. I seem to be gaining weight steadily and i've also heard Lyrica is bad for that as well.
You must have small children? I have one and she is 8 so she can do most things for herself at this point but small children would be a different story. I am still trying to work full time but I am strugling for sure.
I hope you find meds that work for you soon!
I do live in the US...Indiana actually. The drs. around here have 48 hours to call you back. Which is horrible in my opinion. I am getting ready to call them again. I am a very...I can't think of the word. I am not pushy. I always feel like I am going to make people mad. Stupid...I know. I do have a GP, but he doesn't really know much about TN and basically wiped his hands of me when this first started. It was his nurse who told me that she didn't understand what he was thinking and would suggest to him that I see a neurologist. She had actually written a paper on TN for a class she took so she knew more than he did.
I spoke to the receptionist. She said they are going through the voice mailmessages this afternoon and should either get back with me today or tomorrow. I left a message Tuesday morning at 9:30am. It is now Wednesday 3:40pm. Their office closes at 4:00 so my chances of getting a return call today are pretty slim. I did leave another voice mail message at the urging of the receptionist. Maybe they will call tomorrow...
I know what you mean. Have you ever read that book "Flowers for Algernon?". About a young mentally challenged man who takes some drug and becomes brilliant and then due to deadly side effects he must stop taking it and becomes mentally challenged again.?
That is how I feel, I just took 1200 mg of neurontin and some Vicodin and in about a half hour I will be a zombie- I so need a break from this pain! But being a zombie is no quality of life at all! Kathleen
longtobe---- you will do your self much service in finding better pain relief sooner if you keep being "pushy" and keep advocating for yourself!
Even if you had 2 expert doctors in your life who know 100% about TN --- They still don't know the other 100% like we do! Many many of us here have fired doctors - just got a new one when we couldn't be heard.
Please fight for yourself - or get an advocate in your family or social worker - anybody who will stomp around to help you keep pain to a minimum!
I see people on here all the time - Example:
"I've been in pain for 8 weeks on the floor, but I don't want to bother anyone"......
You are the consumer - bug the pharmacist - your neighbor - get your support team together and get ready to fight!!!!
We are right here behind you - mostly 24/7 !
Keep Posting!
Thanks! And you are so right. I called again this morning. I still haven't heard back from my 1st 2 messages. The receptionist said she would make sure they addressed my questions on medicine changes I would like to make. I really hope she means that...
Kc Dancer Kc said:
longtobe---- you will do your self much service in finding better pain relief sooner if you keep being "pushy" and keep advocating for yourself!
Even if you had 2 expert doctors in your life who know 100% about TN --- They still don't know the other 100% like we do! Many many of us here have fired doctors - just got a new one when we couldn't be heard.
Please fight for yourself - or get an advocate in your family or social worker - anybody who will stomp around to help you keep pain to a minimum!
I see people on here all the time - Example:
"I've been in pain for 8 weeks on the floor, but I don't want to bother anyone"......
You are the consumer - bug the pharmacist - your neighbor - get your support team together and get ready to fight!!!!
We are right here behind you - mostly 24/7 !
Keep Posting!
For some reason I can't seem to get this right today. ha!! I do remember the book you referenced, sister. I remember reading it in school. That is how it seems to me.
Barberchick...I do have 3 kids. 2 daughters ages 10 and 4 and 1 son age 2. Thankfully, I have a pretty high pain tolerance, but the pain gets a bit worse each day and I'm worried it will end up like it does every 5 or 6 weeks. Horrible pain that I can't handle that makes me cry and need to hide. My oldest is very helpful when she is home, but she goes to school so she can't always be here. My husband works a lot of hours, but because of the weather has been home more in recent weeks. Lyrica has been the best medicine I have tried by far. I don't like the weight gain...it only adds to my sadness about all of this. The other meds made me so tired and I cried a lot. Most of my exhaustion stems from insomnia and not the Lyrica. When I get a good nights sleep I function much better the next day. I just can't get my mind to stop long enough at night to fall asleep. It's normally around 1am, I usually wake up around 3am and have a hard time getting back to sleep, then the alarm at 5:45 so I can get ready before the kids get up...it's much easier when I can devote all of my attention to the kids. They are not morning creatures at all!!
I love you all and I appreciate all of your support. I am hoping that everyone is having a pain free day. Hopefully I will have some good news in the next few hours and I might get to enjoy some pain free time myself!!
Do you take anything for sleep aid - like melatonin - benedryl or prescription? It would make a difference in your stress !
Can you tell me more about melatonin. Benedryl has the opposite affect on me.
Kc Dancer Kc said:
Do you take anything for sleep aid - like melatonin - benedryl or prescription? It would make a difference in your stress !