This is my first post so please forgive me if I sound like I am on a pity party. I am 41 years old and was diagnosed with ATN sometime last year, but have always had jaw/facial pain from a car accident 20 years ago in which my lower jaw was broken in half at the bottom of my chin. Compound fracture in which the bone was literally haning out of the bottom of my face about 4 inches. Anyway, my TN is a constant burning pain every single day. It was in a sort of remission until about 2 months ago when I became caretaker for my father in law who has since passed away. I can not take tegretol as I had a very severe reaction to just a 2oo mg dose...my hubby had to follow me around the house for a few days and stop me from trying to ingest every pill I could find (even his diabetic meds) and trying to harm myself with any knife or sharp object I could get a hold of. So..no tegretol for me. Lamictal worked, but I do not have health insurance and can not afford it. Dilantin is also too expensive. My current medications are Cymbalta 120mgs per day, Amytryptiene 25mgs at night, Valium 5mgs 3x per day, hyrdocodone 10mgs 3x per day, and oxycodone 15mgs 2x per day on the really bad days, which are more common than not these days. To add to this fun situation I am an addict and my drug of choice was painkillers. I started using them at 25 for back pain/fibro and after two spinal surgeries found myself on 125 mcg fentanyl patch every 48 hours, prior to that it was oxycontin, up to 400mgs per day. Not only did those meds make me super woman, they also numbed me to the mental, verbal and physical abuse I was going through daily at the hands of my now Ex husband. So, I am not too happy about my body being dependant on a medication that I tend to enjoy just a little too much. This disease has been a very cruel and ironic twist of fate for me, since I had overcome my addiction and was living every day thanking God I didn't have to take a pill in the morning to feel "normal" and not be dopesick. So, yes, I am very very depressed to add to this fun situation. I can completely understand why it's called the suicide disease---my family all think I'm just "using" again and the pain can't be that bad, so they have nothing better to do than sit around and say mean things and tell me to toughen up. I also have two little kiddos who are dependant on me...they are 4 and 3 and just can't understand why I can't go for walks, go play outside or really do much, since it seems even the wind blowing on my face sends me in to a spiral of mind blowing pain. My hubby tries his best to understand, but he also has his moments when he gets mad at me because I yell too much at the kids, or when I run out of meds and have to spend the day in bed because the pain makes me unable to function. I shouldn't run out of meds....I know this, but this fight for me is almost too much handle and sometimes I will take an extra pill just to calm myself down so I don't do something to harm myself. This combo of meds actually helps quite a bit--I know most people don't respond to the opoid meds well, but for me they, unfortunately, make the pain barable enough to get through my days. This post has been too long and I'm sorry...I'm glad I found this site though and hope to be able to offer support to others as well as venting my pity party to those of you who have kept reading this whole novel. Thanks for reading and I hope all of you have pain free days.
Post away, this site is for venting and caring and non judgemental friendship. If we can’t talk about our problems and worries where can we? I feel for you, TN is bad. TN and 2 little ones is harder, TN, 2 babes and an addiction to the substance you need to function in some capacity is very flaming hard. Be proud of yourself that you are coping as well as you can. I hope someone else will read this and have similar circumstances and you can be mutual care friends.
I take amitriptyline too. 25mg is a low dose. You might want to discuss upping the dose with your doctor. I was at a really bad point in my ATN journey, 24/7 pain was super high level, all the time. Once I got to 100mg/day on the amitriptyline, it really helped my pain. I still have 24/7 pain, but the levels are much lower and it basically gave me back some quality of life. Just wanted to share...
Sorry to everyone who sees me always say this, but it helped me when I thought I was a lost cause, beyond help. I'm crying now just thinking about!!!
Hope you get some low pain days, kasfool. Try not to take your opiates more than the prescription say to, easier said than done, I'm sure. Just know we're all here and you can vent away to us.
Look into a lidocaine patch/cream rx from doctor --- It couldn't hurt -- saved me from taking extra meds.
Can you get lamictal in the generic form?
Keep coming here and venting!
If you need - I can find - repost what we can give our caregivers to read that PINPOINTS how we feel about TN on the inside.
Your post gives me courage that I am not the only one on this journey. Thanks for being "real". Hang in there and sounds like all htose ^ have given you good advice. blessings~~
I agree that 25mg of amitrip is quite low. Usual dosage is 75mg, some people more than this. You can work your way up to the 75. I don't think it's a pity party at all, we all have days/weeks/months/years like that and at least you have the insight to realise that yes, you have been an addict and yes, you are on the sort of meds you were addicted to, and to be honest I bet that scares the hell out of you (but because you have the insight you aren't an addict right at this time). It must be so hard that your family think you are "just using again" and I bet on the inside they are all almost as scared as you are for you! I too get snappy at the kids because of the pain/meds and that makes me feel like crap too. I hope things improve for you!
Kas anytime you want to vent, cry or scream how unfair this condition is we are hear to listen, hugs to you xxx
Thank you for all your support and replies!! I am so thankful to have found this group. I asked my Dr. today about upping my amytryptilene and the gal who answered the phone said she didn't get an answer---I was also asking for a refill of my breakthrough med, oxycodone 15mg 2x per day and I think they were focusing more on that....also was told that the 25 pills I get of the oxy needs to last 30 days, not two weeks like I thought---I was taking as prescribed once every 12 hours...so like at 8AM and before bed so the pain would subside just enough to sleep....the oxy combined w/the amytryptilene put me to sleep. Oh well...I'll ask to up the amytryp another time---the 3 hydros per day will have to do. Today was a bad bad day---I have had the "electric" attacks all frigging day===thank God they only last about 2 seconds....but I tell people this. Imagine slamming your hand very very hard in a sliding glass door---the initial blast of pain lasts a few seconds but damn, it hurts the rest of the day right? Now...slam you hand in that door about 5 or 6 times an hour and perhaps maybe you'd understand just a little how this feels. Anyway....thank you for your replies and hope you are all having a great pain free day.
well i know for me that my family really doesnt get it either. I think they think I'm over reacting, and they kind of just ignore me alot like I'm not even there. Makes me feel even worse now not only has this disease taken my life but now I'm not even a person. I'm in the early stages of treatment, the meds are hell, make me a dizzy zombie, can't even drive. The doctor just keeps saying I'll get use to it. I'm even thinking of leaving my husband so he doesnt have to put up with this anymore, he deserves someone healthy and not a burden