Day 2 on this drug and all I do is sleep and the pain is still there. Doc started me on 200mg twice a day. I also take Zoloft and Lipitor. I guess I am a mess. Anyone out there in the same boat or can shed some light.
Forgot to mention I took an extra 600mg b/c the pain was through the roof. That is what made me so sleepy.
Hi Brian,
Have you been clinically diagnosed with TN? I was originally given pain killers until it was diagnosed via MRI. I've been on carbamezapine, amitriptyline, gabapentin and pregabalin. The only one that I found to give any sort of relief was pregabalin. There are surgical options too. I had MVD which provided short term relief but it's since come back. It does have a high success rate though and I've met people who it actually worked for.
Maybe go and see your consultant or GP and ask them to review your medication. Unfortunately though, what works for one won't work for another. It's more trial and error.
Totally sympathise with where you're at! It's the most horrendous pain I've ever experienced!
I hope you find some relief soon! Take care.
J
Thanks for taking the time to reply......I have not had an MRI.......so that is probably the next step........I am in terrible pain as I write to you
Did your GP diagnose this? You need to be careful with your meds. You should follow the guidance from your doctor but if you need to increase it, you should increase it gradually. Going from 400 to 1000 a day could cause adverse reactions. Your body needs time to adjust plus it may take a week or two before you start to feel any relief.
Carbamazapine made me a mess, feeling so tired all the time but unable to shut off from the pain and falling over etc.
Maybe give it a couple of weeks on the recommended dose and if nothing, go back to your doc. They should have clinically diagnosed it before dishing out prescription meds but it's money saving I guess!
Sorry you're in so much pain, I understand and uunfortunately there's no comforting words I can offer. You need to just ride it out. Since mine came back I've tried hard to avoid the meds because I'm fit for nothing so just shut myself off from the world till it passes and visualise the pain. It might sound stupid but when I think of the pain, the sensation, the frequency etc. It helps me to cope with it better. Still really horrible but when you've suffered for pretty much 4 years you start to learn how to best cope with it.
If you know your triggers it might bring you some slight relief to avoid them. My worst ones are drafts and the cold but had them all. It really does suck!!
Don't let it beat you
So frustrating b/c I own a restaurant and need to be there for obvious reasons. Not sure what to do. Thank you so much for the support
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brian87983 • about a minute ago
So frustrating b/c I own a restaurant and need to be there for obvious reasons. Not sure what to do. Thank you so much for the support
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I fell asleep bet weren't our. 2 messages an d now the pain has moved my throat.......does moves round that frequent?
To your throat? Brian, what exactly are your symptoms hun? I've never had throat pain, I don't believe that is a symptom of TN. It's your face that will feel it if one or all (3) branches of the Trigeminal nerve are damaged on either side of your face.
What side of your face is it, what are your symptoms & how long have you had this?
It started last week. I have a history of sensitive and brittle teeth. My Dentist took X-rays and surprisingly everything looked great. The next day the pain got worse. I went back and they did a 360* head scan of my teeth and everything turned up good as well. The pain felt similar to an absesed tooth. But now it has moved from my face to the back of my mouth and now it is to the (my) left of my chin at the start of throat. All pain is on the left side of my face.
What does the pain feel like? Do you have or have you noticed any other symptoms like tinnitus, jaw locking or clicking, hard to swallow?
The pain is mild when I swallow....but the pain moves around.....two days ago no pain in my throat
Hi Brian I am truely sorry to hear the awfull time you are having this is a truely awful condition. I have seen first hand what it does to a person my son Daniel has had it now for three years. He is on high doses of Tregratol an Gaberpentin which zonk him out a lot and prevent him from doing so many things, the drugs are truely debilitating, an definitely not the soloution. I suggest u get referred to a consultant as soon as possible as it takes so long these days to get seen an u may end up seeing severak before u find the right on it is a long drawn out process to get any treatment which is so frustrating when you are trying to cope with a very painfull debilitating condition like TN. Dan will go through whatever it takes he just wants it killed dead and to get some quality of life back, good luck keep us posted on how it is going for u I think pouring how you feel out to others who truely know how hard it is dealing with this condition helps, truely sending u lots of best wishes.
Thanks Heidi.....We'll see what my GP says .....
It might be possible that it's not TN or it is but you have a throat condition also? I think the best thing to do would be to go back to your doc for a second opinion and just clearly list all your symptoms hun.
I saw 5 different doctors. 4 diagnosed as TMJ disorder and 1as migraine. I went back and saw a nurse practitioner who straight away said TN and referred me to a consultant who confirmed diagnosis through an MRI. It can be difficult to diagnose.
I was diagnosed with classic and atypical on the left side and all 3 branches affected. I got the sharp electric shocks and the dull burning ache. I don't think the throat pain is linked to the TN so please go and get checked again to be sure so you can get the correct treatment. If it's not TN the tegretol will not bring any relief and just make you feel awful and sleep all the time.
Jen x
Thanks jplou I will try to get in today with my GP........thanks for the support
It's ok. I hope you feel better soon! Fingers crossed!
Let me know how you get on.
Just don't leave till they actually listen to you!
I have had throat pain, frequently. The pain moves around.
My GP confirmed that I have TN. However I am not scheduled for a MRI. The side effects are in full force and driving me crazy. I have not been able to do anything since Friday. Really depressed
Hi Brian,
Sorry you're feeling so depressed! It does get you like that. The only positive is in knowing that this episode will pass. If it carries on being so severe and attacks are so frequent then you must ask for a referral! A consultant can offer advice on treatments (medical or surgical) that may bring you relief! I had it very severe for 11 months straight before they booked me in for surgery as none of the meds provided relief. It was one of the most horrible times in my life, I shut myself off. I'd never go out, had the tv on so low, couldn't wash my face, my hair, my teeth, no applied pressure. Even hair brushing on my face resulted in such horrendous pain! I completely understand where you are hun!
Hang in there, you're stronger than TN so don't let it win! My friends think I'm mad because when it starts now I just tell it to pi$$ off lol! Doesn't work but helps me mentally.
Give it a couple of weeks on your meds and go back if no improvement and request a referral to a neurologist!
Take care
Jen