Pain Management for TN
Posted , 13 users are following.
I am going to my health provider on the 20th. I am on 3/300mg x 3 times a day plus maybe 5 extra when I feel pain all at once.
I had to pull over and let my wife drive as I was screaming at the top of my lungs in pain. What in the actual hell happened to me? I could move talk breathe . I had to think about breathing because the pain took my breathe away. I passed out pretty sure due to pain for 6 hours after my episode .
I have constant pain 7/10 and irritability 10/10
My episodes of severe imobilizing pain , 2 a week maybe 1 if I'm lucky. If I miss my dose by a small time frame in stuck with intense pain until it decides to go away on its own. I do not want surgery because well it scares me.
I need something for my constant pain and breakthrough pains. My doctor is a moron I want to go and tell him " This worked for Randy may I try this for my pain! Or I will jump out of this 3 story window and end it because I can not take it anymore.
I don't leave my house. My blinds stay closed I can't eat I can't sleep I can't focus I already lost a new job of two weeks because I went to the ER due to my face because it's getting that bad that I want to be at a hospital because I feel like something is scrapping out from my head.
I'd rather and alien burst out of my chest.
I need pain management regimes. My wife I can tell its taxing on her to see me rolling around on the ground drooling from my face because I'd be crying and yelling because of the pain. My son.. Out of all the things I couldn't not want more .. He is my trigger I try to get to him 24/7 so he won't cry but his cry cause my ear to explode and then boom pain.
My ear drum have been in more and more pain with each episode .
Only complete dark and silence brings me any peace..
Please help me I'm begging you.
0 likes, 21 replies
wanganui TN-Sucks
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wanganui TN-Sucks
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dona40912 TN-Sucks
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paula76255 TN-Sucks
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Hi. God you have my empathy and everyone else's whose read your post. I guess you're in the US and I def agree with the reply you've had, go straight to a&e. Ive googled centres of excellence in the US for TN and quite a few have come up but if you're in the uk I've just been up to Liverpool and seen a professor Eldridge who was excellent. I'm still taking duloxetine and nearly on max dose 120mg daily. This is for neuropathy only and not the TN shock pain. Might be worth looking at and apart from a dry mouth I've not had any side effects.
Could your parents/close friends help out with your son until your pain is under control or at least a bit better? I wish I could help more but we all know what you're feeling and it is utterly crap. Hope you get decent help ASAP! Paulax
wanganui paula76255
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paula76255 wanganui
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Hi! I'm having either a constant pain in my lower jaw which then radiates outwards or it turns into a pulsating pain, which as my heart clatters along really fast, isn't very nice. Then I get a pain in my top jaw just under my nose which seems to fizz upwards! I get pain in my tongue and also under my eye socket. At the mo my jaw socket feels like I've been punched and radiating pain along my lower jaw. Basically pain moves around the right hand side of my face as and when it chooses. I'm not very good at describing pain. Recently it hasn't been the electric shock pain and that's the pain that really floors me. I was told the shock pain is TN and other pain is neuropathic.
Prof Eldridge was very thorough and if/when I ever need surgery then I 100% trust him to look after me. I had to pay privately to see him as if I'd have gone nhs it would have been any of his colleagues I'd have seen. Good luck! Paulax
wanganui paula76255
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paula76255 wanganui
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TN-Sucks paula76255
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I already had the MRI and they didn't go any further into the reason why I just got it and then that was itz
Valkyrie TN-Sucks
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You must go to the Emergency of your closest big hospital at once with a copy of what you have typed above. You can't go on like this another day. This is an emergency situation for you. You must get help and another, better Neurologist. Get help right now and don't wait another minute. Take a support person with you to help get across to them that something must be done. Don't be afraid if they offer you surgery. I have had Gamma Knife and I felt nothing. Others have had great relief from MVD surgery. What have you got to lose in the state you are in. Take any op that they may offer you. Just get something done. Do it now.
army183 TN-Sucks
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Not sure where you live but get to your A&E pronto. There are loads of TN specialists in the neuro departments of the bigger hospitals. The MVD operation is now a classical and regular procedure. If you have the superior cerebellar artery pressing on the trigeminal nerve then a high quality MRI will show it unequivocally. Don't prat about with small practices or GPs who are not up with this condition. Not sure what drugs you're on but I'm taking 1600mg of Carbamaz per day in bad periods. Maybe you need some others too. Get into the hospital system, it is the only way. It may even be worth it to have an initial consultant meeting and pay privately. This will accelerate the process
Good luck to you
Big D
TN-Sucks army183
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I'm just going taking GABA right now.
It helps but isn't enough to for the constant burning and jaw clenching that lasts all day.
I saw klonopin is used for TN pain . I was given Percocet once for this. I told them to shove it and give me something that would help knowing that Opiods do not work for this pain. I'm becoming depressed and s hermit I feel like this would help too with that .
susan33651 TN-Sucks
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You are in dire need of emergency medicine. Rather than have a family member, or your good self, drive you to an emergency room I would call the paramedics/ambulance, they will be able to, firstly emphasise the severity of your pain to the ER docs, and secondly they can give you something immediately to aid in relieving your pain. Once there you will have access to specialists and MRI scanners etc.
Best wishes.
heather30609 TN-Sucks
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sally90 TN-Sucks
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Hi,
See if you can have Gamma Knife Surgery. It isn't scarry no knife involved' it is painless just 1 day in hospital, however it might not be instant, mine took 3 months after having it done before I felt any better, in fact it was worse initially but now 4 months later I just have a little bit of pain. I can talk, eat, drink and feel alive. I also have MS and all the drugs for TN do not work. Have you tried TN society? They have very useful literature. Make sure your GP refers you to a really good Neuro surgeon.
This really is the worst pain in the world, the literature from the TN society is useful to show to friends, family and work to help them understand.
With very best wishes
Sally
TN-Sucks sally90
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I just have a real bad phobia of surgery. I have been looking at medications to help with my sleepless nights and mood swings .
I just wanna go a few more days without surgerys.
At this point I'm willing to just take pain killers to make me sleep all day to not feel the pain. Thing is I don't get pain killers because this isn't a Opiod relatable thing.
I don't know I'm at the point auicide seems better
paula76255 TN-Sucks
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You son and wife need you so please try and focus on them. I know how bad this pain can get BUT there are other options apart from surgery. Someone I know has had sphenopalatine ganglion blocks (SPG injections) and apparently she's going 4-6 weeks without horrendous pain. I am going to look into having these myself but maybe you can get someone to research for you? also in the states I've read they use Botox injected into one or two of the nerve branches and they're supposed to really help. Please don't give up. Thinking of you. Paula x