Who else on here suffers from atypical neuralgia? And what meds are you on please? I’ve had non stop pain for 4 days now and it’s worse than it has been in ages. I don’t think my meds are doing anything for me anymore. What meds are others on who have this type?
Hi there! Sorry to hear that you're in pain. I'm also suffering a bit more at the moment although I don't know why. I'm on Tegretol and Lyrica.
Any tips on what you do to help during attacks? I don’t know if this is just me but during an attack I find it hard to lie down as my pain worsens. I can’t stand to have my head touching the pillow and be lied down. Early this morning I finally got a couple of hours sleep by being propped up on the sofa with a really soft blanket wrapped around my ears. This sounds ludicrous to many but this sometimes helps me. The pressure inside my head gets terrible feels like it will explode from the pain.
Hi Elle,
I am so sorry to hear that you are suffering so much; been there-done that. I think we have all been there.
My only advice is to keep working with your doctor(s) until you find the right combination of drugs for you or until you have a definitive diagnosis that indicates one of the surgeries will work.
I just had a flare up (after a month and a half of low level and pain free days). As is usually the case, it occurred on a holiday weekend. I doubled up on my medications and that dialed down the pain level, but I also spent most of one day in a dark, cool, room with no noise and no interactions with people or technology. When that happens to me, I can't even read or listen to music. But, once the meds begin to work, I'm back.
It's not like I'm self-medicating either. I've had conversations with my doctor during a regular visit and he suggested increasing my gabapentin for the dull, aching pain and increasing the amitriptyline for the stabbing, knife-like pain. IT seems to work for me. I'm on a relatively low dose of both of those meds, but I can still feel the difference.
Hope you find relief for your pain.
Rissmal
I spoke to a nurse on the phone this morning as its all I was offered and she said I cannot increase my carba past 600mg and I can only take 1 amitriptyline before bed. After arguing though that I need something more she agreed to speak to a doctor and call me back so I’m currently awaiting the call!
I have atypical pain and I’m on carbamazepine 600mg a day. It doesn’t work quickly enough to use on an as needed basis. For flare ups, I use a topical lidocaine cream and a lidocaine mouthwash. Lidocaine is the medication that dentists use to numb your mouth during fillings. It works to numb the nerve completely. The downside is that given without epinephrine, it only lasts about 1 hour.
Just something you might be interested in knowing. My doctor decided to try me on Carbamamepine. I was currently on Amitriptyline. He (and the pharmacist) told me that Carba makes the Amitriptyline ineffective, so I had to come off of this drug before I started the Carba so I didn't have sudden drug withdrawals. I am not sure that taking both will do you any good.
That’s interesting, lots of different doctors seem to have different opinions hmm
Toothache where can I get the cream from? That sounds good…even if it only lasts the hours. How often can you use it?
Your GP can prescribe the lidocaine. There is also some Lidocaine cream available on Amazon.
I take gabapentin and nortriptyline. The nortrip has been extremely helpful in curbing my headaches.
Carbamazepine increases the rate that amitriptyline is cleared from the body, so someone using them together might need a higher amitriptyline dose than usual. However, since the dose of amitriptyline needed for pain relief is quite low and the drugs are prescribed synergistically for the same condition, I see no problem with using the two together.
Elle, I get the cream made by a compounding pharmacist. She puts it in a transdermal base so that it goes through the skin. I use it around 2 to 3 times a day.
flute cutey said:
Just something you might be interested in knowing. My doctor decided to try me on Carbamamepine. I was currently on Amitriptyline. He (and the pharmacist) told me that Carba makes the Amitriptyline ineffective, so I had to come off of this drug before I started the Carba so I didn’t have sudden drug withdrawals. I am not sure that taking both will do you any good.
Thank you for your words of wisdom 
I hope my doctor takes these into account when I pass on the information.
Hi sorry to hear your suffering. Not sure why your nurse said no more than 600mg of carbamazepine, I take 1400 mg and 400 mg of lamotragine, I have also been referred to the pain clinic with a view to having RFD.
Tegretol has a narrow therapeutic index (the window between effectiveness and toxicity). The levels that it reaches in the blood depend on body weight and speed of drug metabolism. People who have taken it for longer metabolize it faster, so they are able to take higher doses. Bigger people can also take more. I had my tegretol levels tested when I was taking 400mg a day, and it was already low to mid range. Taking 800mg a day, for my size, would put me at high range, and I’d probably be toxic taking 1400mg a day.
Stig said:
Hi sorry to hear your suffering. Not sure why your nurse said no more than 600mg of carbamazepine, I take 1400 mg and 400 mg of lamotragine, I have also been referred to the pain clinic with a view to having RFD.
Hi,
I have had bilateral ATN for over two years and have had many ups and downs. Amitriptyline or Nortiptyline have both worked very well for me. But when I have a severe flare up nothing works.
Heat is my best friend. From a hot bath to heating pads. For some people cold works better. For the deep, burning and tingling that I get on my cheek and temple I find that Voltaren Emugel helps a wee bit. If it is my tongue pain then I eat a lot of popsicles. The cold helps with that. Sometimes a max dose of Advil will help with the migraine symptoms I get.
Other people use Lidocaine mouthwash and patches. There are also compound creams that can be made up of prescription medications. I know some people on here use them.
Weather, my cycle, stress, anxiety and lack of sleep are my biggest triggers. Pay attention to your body and keep a pain journal so that you can start identifying what your triggers are. And get lots and lots of rest.
When things get really, really bad I take something to help me sleep. I find that sleep can reset things and breaking the pain cycle can also help.
A lot of us have trouble laying down to sleep. I have one friend on here that sleeps in a huge bean bag chair and another that sleeps in a lazy boy.
I hope you can get some relief soon.
Jane
Thanks for your advice. My doctor found it strange that I got worse when I lay down to sleep as most TN sufferers sleep to escape it, but I guess atypical people have the same problem as me! So at least it is quite common. I have started identifying some triggers. I’ve noticed fizzy pop and hot drinks seems to set me off, as well as when it is windy. I walk around with my scarf covering my face most of the time people look at me like I’m mad…especially when the sun it out!
I also find weekends and holidays alot worse. Does anyone have to go to work With this condition?
Hi Rachis,
Could not manage work. Had to retire.
RIssmal
Crickey you must be well off.
RachisCool said:
Crickey you must be well off.Crickey, NO, Rachis....I'm just old. Only two years from retirement, so went early. I have had to readjust my budget and, honestly, haven't quite figured it all out yet, but I really had no choice.The first 4-5 months, adjusting to medication: lying in a dark room under the covers-no noise, no light, no touching me please-, OR so dizzy I could not stand upright -much less drive a car, made it impossible to work. So, no, not well off.