I am sure we have all hit rock bottom at some stage while battling with TN. I am sad to say I have recently been there and done that and am now trying desperately to crawl my way back up to the land of positive.
18 months ago I had an MVD after Tegretol and pain meds failed to control my TN issues. Sadly three months later it returned, but not before I had an unforecasted stay in hospital for seven days due to pancreatitis - which drs assumed was from high dosage of Tegretol. Since then I have been relatively meds free - apart from some pain relief.
Since the pancreatitis I have been paranoid about taking any medication to control the nerve pain, but have been forced to go back onto meds to try and take control of my life again.
It’s been pure hell. I am not coping mentally and am so very scared I am going to wind up in hospital again further down the track with complications brought on by the anticonvulsants and pain killers. With only days of being on Dilantin (Phenytoin) I can feel the sluggishness slowly sneaking its way into my body. For my job I need my wits about me and to be able to talk without my mind being in a muddle.
This is so not the way I wanted to live my life, but to ‘live’ my life I feel there is no other option at present
Gosh, I know how you feel. It's okay. We have all been there. I also know those are just words. You do feel alone. It would be better if we had someone right here beside us that knows how it tears us down. I once had a high profile job and it was tough with all I went thru. Had a boss that didn't care. Even family doesn't get it. They forget how we suffer every single minute of every hour of the day It never leaves us. Being on the medication is bad enough, let alone the pain it doesn't take away. It just masks it. So we hold our head up and go on in terrible pain and anguish. Wish I had some words to help. Just remember each day is a new beginning and stay confident in your self.
Yeah, a lot of us can relate. Not only do you have to take lots of drugs and still be in agony, but for me at least the medical bills have been insane...more than $100,000 since this started. I feel like a slave to doctors, some of which are completely clueless and haven't helped even slightly.
Mel, yup, completely understand…
I yearn to “live” again…I’ve been existing.
I don’t know who I am anymore…
Sorry to hear about your experience with pancreatitis, fear plays a big role in TN, it’s completely normal as you know. Knowing doesn’t make it easier…Unfortunately I think it’s a moment to moment thing, in terms of getting by…
That’s all we can do. Hope for better days ahead…
I like the title of your discussion…
…the only way is up.
Have to make this my new mantra!
(( hugs )) Mimi
I am just so sorry for all you’ve been through. I know there are days now when I am grateful for the good hours when I used to find days to be grateful for.
I am waiting right now for a yea or nay on my MVd surgery and it’s torture. Waiting on this bit of hope.
I hope that you can find those hours of peace to hang on to in this storm. I’ll keep you in my prayers.
I am so lucky in some ways. Healthcare in New Zealand is affordable, we sometimes feel like we live in the dark ages, because we don’t have the latest gadgets, lol! But I am privileged. I have still spent $1000’s trying to get some relief from this condition. But seeing specialists under our governments health system is free, you can pay privately at a huge cost, but the same private specialists work in our public hospitals also, so I guess at that we get the best of care both ways - if you are prepared to go on the public hospital waiting list, (it can take 3 months plus to get seen at times depending on your case.) My MVD operation was free, which I am very very grateful for as we have no health insurance and to be honest no company in their right mind would take me on for health insurance now. So while I moan, I know I am extremely lucky in so many ways!
Shindig said:
Yeah, a lot of us can relate. Not only do you have to take lots of drugs and still be in agony, but for me at least the medical bills have been insane…more than $100,000 since this started. I feel like a slave to doctors, some of which are completely clueless and haven’t helped even slightly.
That sounds great. Our system is pretty convoluted. I'm lucky enough to have insurance through work which costs $1,000/mo in premiums and I still spend thousands out of pocket. If I didn't have insurance they simply wouldn't do the procedures....to get an mri or ct they have to get it authorized through insurance which takes a couple weeks and if they don't authorize it, the hospital won't do the imaging without a lot of money up front....
The bill for my first MRI, to my insurance, was $10,203 and I had to pay $400 of that.
Here's what my MVD cost, not including the anesthesiologist:
Mel S said:
I am so lucky in some ways. Healthcare in New Zealand is affordable, we sometimes feel like we live in the dark ages, because we don't have the latest gadgets, lol! But I am privileged. I have still spent $1000's trying to get some relief from this condition. But seeing specialists under our governments health system is free, you can pay privately at a huge cost, but the same private specialists work in our public hospitals also, so I guess at that we get the best of care both ways - if you are prepared to go on the public hospital waiting list, (it can take 3 months plus to get seen at times depending on your case.) My MVD operation was free, which I am very very grateful for as we have no health insurance and to be honest no company in their right mind would take me on for health insurance now. So while I moan, I know I am extremely lucky in so many ways!
Shindig said:
Yeah, a lot of us can relate. Not only do you have to take lots of drugs and still be in agony, but for me at least the medical bills have been insane...more than $100,000 since this started. I feel like a slave to doctors, some of which are completely clueless and haven't helped even slightly.
Mel, hang on. Take a day at a time and if that’s too overwhelming take an hour at an time. It helps me to keep very busy at work so I don’t have a chance to think despite the fact that I’m screaming inside… It also takes me much longer to accomplish what I used to do quickly. I depend a lot on my friends and husband because I have to hide my condition from everyone else, they are a Godsend who have kept me going. You are in my prayers. Don’t give up!
Gosh, thanks for your support everyone. So nice for you all to take the time to reply.
I have spent the last few days trying hard to get through work (I am a learning assistant that helps children that are having difficulties with Maths). After that I am so exhausted, from the meds - but mostly trying to keep a brave face. I come home and cry and cry. I feel so sorry for my lovely husband and four children, this is so not the life I wanted to share with them. I am so sad. The shocks into my teeth have increased again today All I can think is I have a good forty years to live and in honesty can’t see the light at the end of the tunnel. Sorry to be so negative. M
--- ask your doctor - ASAP - if you can take Amitriptyline!!!!
Different class of meds / that help pain AND helps depressive symptoms..
Many here have relief from this !!!!
When I was on trileptal that made me foggy..... my neurologist let me have a LOW dose of Ritalin to take on the days I needed focus and memory.....
Your doctor should be doing / trying many things --- or fire them!!
Also, tried lidocaine face patches???
Call and ask doctor about that too
KC Dancer, I have tried amitriptyline already. I had anxiety and pain issues at the end of last year (guess it was the stress of Christmas etc) and sadly it didn't help.
I am going to my dr on Friday to discuss things with him, as this is the first chance I will have to do so. He doesn't know I am back on meds due to having to go to an emergency dr on weekend as I just couldn't cope another day and my drs surgery was not open. He is a lovely guy, he also knows how I feel about medications due to past complications and is very understanding and open minded.
I will inquire about the patches, but am unsure whether they use them over here. We are a bit backwards when it comes to some treatments :-(
I will also ask for referral back to neurology. This could take some time due to our health system.
That sounds great. Our system is pretty convoluted. I'm lucky enough to have insurance through work which costs $1,000/mo in premiums and I still spend thousands out of pocket. If I didn't have insurance they simply wouldn't do the procedures....to get an mri or ct they have to get it authorized through insurance which takes a couple weeks and if they don't authorize it, the hospital won't do the imaging without a lot of money up front....
The bill for my first MRI, to my insurance, was $10,203 and I had to pay $400 of that.
Here's what my MVD cost, not including the anesthesiologist:
Mel S said:
Wow! That's insane! I am so grateful for our healthcare system - just looking at that bill makes my nerve fire! Poor you :-( It's crazy to have to this stupid condition as well as having to pay for sorting it out - or attempting to! That wouldn't help much with recovery receiving that!
How long did you try amitriptyline? It takes at least a week to kick in fully. The cymbalta doesn't kick in for around a month usually.
Nortriptyline for me is better than oxycontin for this type 2 pain. I take 75mg in morning and at night. I started on 10mg 2 years ago. They don't like to go above 150mg with it so I was taking 120mg of cymbalta but swapped it out recently for effexor, which seems to help a good bit....I've heard nortriptyline has less side effects than amitriptyline.
Worst part of it though is you gain weight.....I've gained 50lbs in the last year from nortriptyline.
Was on amitriptyline for around 6 weeks. Even had increased dose. It seemed to work initially, but like the Tegretol it seemed to decrease in its effectiveness over time.
Am worried about the side effects - especially weight gain. When I was on the Tegretol it affected my thyroid (which was bound to crap out at a later date due to hereditary autoimmune condition) I stacked on the weight then, only from getting pancreatitis did I manage to get the weight down (not eating for seven days will do that to you, lol!). Not that that was at all funny, I was an acute case and was on IV drip and feed through NG tube a few days before I was discharged Since then I have been watching what I eat and exercised more - even managed to jog/walk a half marathon (TN health was better then). Sadly had booked another half marathon which is next weekend and I am not sure if body will cope even walking at leisurely pace with friends. Let me clarify, I am not a fitness freak in any way. My idea of a good time is sitting on the couch with my knitting
so sorry I know trying to work with your mind all muddled is so hard and also the drooping when it gets bad is awful makes you sound like a drunk ....it is a horrible process and even though I worked for a dentist they were uncaring and not sympathetic but I made it 14 years God Bless You be strong
