Hi I’m new on here, I have atypical neuralgia and the pain has been lasting days recently, constant aching throbbing pains that are making me miserable! I’ve recently switched meds from gabapentin to carbamazepine and gradually building up the daily dose. I’m one 400mg a day ATM but I still think I’m gonna need to build it up as the pain is still there. It makes me feel really drowsy and dizzy but I’m hoping these side effects will get better as my body get used to meds. I’m still taking codeine and nurofen hoping that this will help too when the pain gets too intense but obviously it’s not really helping. I’m going back to my doctor today and I’m wondering if there is anything else I can ask to be put on alongside caba to help with the pain?
This is a hard thing to hear, but I suggest you wait it out, practise fierce distraction therapy, limit the painkillers (which wreck our pain signals even further), and hear about an increased dosage sooner rather than later. I did not reach painkilling before I hit 600 mg carba, and still I had to increase it every few months because of increased tolerance.I stayed on 1000 for 1,5 yrs when I got there, and then 1200 for 6 mo. That was max for me, an I have been trying out gabapentin, pregabalin and now finally amitryptiline, so the list I of meds get short fast.
Like me, you caught this bastard early, and we have to live most of (and the remainder of) our lives with it. In our situation, I think it is better to no be tolerant of too many drugs too soon. Since MVD is normally only an option for people with hardening arteries due to age, that is often out of the question, too. However, if you have concerns, make sure to discuss tis with your neurologist and not just your GP. I is possibly best to go private - my NHS neuro gave me 15 mins, an mri and a box of aspiin, and told me to come back with my 'migraine' - in 8 months. I went to Nuffield health (as I already had a diagnosis from Norway I was angry at this point). The neuro gave me one hour, explained detailed questions I had after a long time with this condition, and it made me realise that I am glad for two things:
1) I know I still have a few options
2) I know I can take the pain after 16 years of shit literally thrown in my face.
As side strategies, I do certain things to relieve my ATN (my TN1 is helped by the carba still):
- I stay away from triggers
- I get myofascial release and massages weekly to prevent tension in the neck and jaw area
- I do yoga for relaxation, which helps almost immediately
- I distract myself with things I like and that I know relaxes me (friends, cooking fun things, eating fun things)
- I exercise, as that helps my pain too (circulation in the face helps for me)
- I worship my heat pad and have several of those
- and not to mention: I work, as that makes me sane and gets me into contact with the world outside the TN bubble.
You should search this site for helpful tips on vitamins, lidocain cream/patches, caipsaicin products, and don't forget to monitor your triggers (keep a pain diary perhaps). I get new ones every month right now, so it changes constantly for me.
Most importantly, don't give up. If you feel down about the prospects, you should consider psychological help. I am truly thinking of going back to that, as the dark future can be positively daunting to say the least. Stay in there! We are here to help.
Thank you for your advice and insight. What age did it start for you? I was referred to a neurologist but I’m back at the doctors today and going to ask to be referred to a different one as they keep cancelling and messing me about and as I’m a teacher I cannot just up and leave for appointments as and when they decide to give me one. I’ve also turned up for an appointment after waiting ages and taking half a day leave of absence and the guy was off sick so I just had a chat with a normal gp which annoyed me. I will persist with the caba for now as I think it is helping somewhat and will try stay away from the painkillers. Before this started I was one of those people who refused to take medication unless I really had to. I’d wait out a really bad headache just because I didn’t want to take paracetamol. Now it’s like counting down the hours till I can take my next lot of meds 
I know the feeling. I refuse to take anything for pain anywhere else, but you should see me at breakfast and evenings, haha. People who don't know make BIG eyes. Meds become a bit of a crutch. But I will keep that crutch, thanks! :-)
I was 20. It slowly increased with me, so it has been steadily regressing. I'm soon 36, so it settles on you after a while. It is just a matter of accepting that it is going to be painful, but at least we are not dying, and they are discovering new things all the time. If you find it disheartening, check out this, fo instance. http://www.bodyinmind.org/who-are-we/
I definitely intend to go there at some point.
Until you get your meds in place, you might want to consider to sort things out with your managers. Teaching is probably especially tiring, what with paying attention all the time. Maybe you could work out some adjustments to your schedule etc. I can work 8 hours because I disperse it throughout the day, and take at least a two hour break midday to do something else. Hopefully you can make work manageable at least until you get your meds in place. And bloody neuros, haunt them down. (Hope s/he is not one of us!!!)
Hang in there!
What helps for some is Baclofen and Pamalor . The first is a muscle relaxer and the other is an old school antidepressant that has an "off label" usage for nerve pain. Please bring up to your Doctor for their feedback. Your doctor is the ultimate decision maker. This is only a suggestion,yet it may be worth discussing
Hi Elle,
I'm new to this website and to TN (3 1/2 months). I've finally, just now, found a bit a relief from a combination of drugs: Amiltriptyline (10 mg) and Gabapentin. Sometimes you might need the combo to find relief. I read all the articles posted on here and bought the book ""Striking Back". I found multiple good suggestions in both places.
All of the suggestions by Tineline are spot on too.
I sympathize with you and wish for you to have 'pain free' or 'minimal pain' days.
Rissmal
I was 29 when I first had TN. All these meds take time to start working and dosages increased slowly. Tricyclic anti-depressants can be very helpful for ATN type pain. I was on Amitriptyline and am now on Nortriptyline. All of these meds do have side effects but your body can really get used to them over time and many of us have improvements with pain. I have been pain free for months at a time.
I know its hard to be patient while you are in pain. Stress is killer with TN. Take care of yourself. Heat helps me a lot--hot baths and heating pads. Also Voltaren Emugel for tingling and burning on my cheek or temple. Ask anything here and learn as much as you can!
wow, I did nt know Voltaren would be effective. Good stuff!
However, my neuro really scared me off the painkillers. But in the end, most of us need to go there, I guess. I am considering a visit to an Oslo pain clinic with everything from neuros and anaesthesiologists to homeopaths and psychologists. I think maybe they would know more about TN specifically (or so I hope...)
still waiting for the amitryptiline to kick in. Hope that it was really worth all the tinnitus, weird drug interactions and excessive sleeping. Quite reassured by your words, justjane37. :
Great post, full of options. Having had to take gabapentin for some other unrelated pain but with the same cause (MS) I can say that at 1600 mg 2 x day I felt like a drugged, zoned-out horse so I quit taking it - BUT IT RELIEVED THE PAIN. And that pain (in my wrists and arms but NOT carpal tunnel) never came back, even after I stopped the gabapentin.
Tineline said:
This is a hard thing to hear, but I suggest you wait it out, practise fierce distraction therapy, limit the painkillers (which wreck our pain signals even further), and hear about an increased dosage sooner rather than later. I did not reach painkilling before I hit 600 mg carba, and still I had to increase it every few months because of increased tolerance.I stayed on 1000 for 1,5 yrs when I got there, and then 1200 for 6 mo. That was max for me, an I have been trying out gabapentin, pregabalin and now finally amitryptiline, so the list I of meds get short fast.
Like me, you caught this bastard early, and we have to live most of (and the remainder of) our lives with it. In our situation, I think it is better to no be tolerant of too many drugs too soon. Since MVD is normally only an option for people with hardening arteries due to age, that is often out of the question, too. However, if you have concerns, make sure to discuss tis with your neurologist and not just your GP. I is possibly best to go private - my NHS neuro gave me 15 mins, an mri and a box of aspiin, and told me to come back with my 'migraine' - in 8 months. I went to Nuffield health (as I already had a diagnosis from Norway I was angry at this point). The neuro gave me one hour, explained detailed questions I had after a long time with this condition, and it made me realise that I am glad for two things:
1) I know I still have a few options
2) I know I can take the pain after 16 years of shit literally thrown in my face.
As side strategies, I do certain things to relieve my ATN (my TN1 is helped by the carba still):
- I stay away from triggers
- I get myofascial release and massages weekly to prevent tension in the neck and jaw area
- I do yoga for relaxation, which helps almost immediately
- I distract myself with things I like and that I know relaxes me (friends, cooking fun things, eating fun things)
- I exercise, as that helps my pain too (circulation in the face helps for me)
- I worship my heat pad and have several of those
- and not to mention: I work, as that makes me sane and gets me into contact with the world outside the TN bubble.
You should search this site for helpful tips on vitamins, lidocain cream/patches, caipsaicin products, and don't forget to monitor your triggers (keep a pain diary perhaps). I get new ones every month right now, so it changes constantly for me.
Most importantly, don't give up. If you feel down about the prospects, you should consider psychological help. I am truly thinking of going back to that, as the dark future can be positively daunting to say the least. Stay in there! We are here to help.
Hello Elle,
I would just like to add that narcotics did not touch my TN. And though "Tineline" had a wealth of good options in that first post especially "don't give up", one of those was not even an option for me, and that was "practise fierce distraction therapy". Oh no, there was nothing more compelling and motivating than the pain I was having. What I found to be particularly helpful in my own experience is avoidance, avoiding known triggers such as cold wind or cloudy days with bright sun.
Tegretol 200 mg t.i.d., tramadol 50 mg t.i.d., and Flexeril 10 mg at bedtime got mine under control. I can't find the GB names for these drugs.