Constant pain rather than pain "episodes"

Hi all, I haven't been here in a while. Been suffering recently with depression since being "officially" diagnosed with GPN since last year (I'm in UK) and no one seeming to have a clue where to send me or how to treat me.

Anyway I have a question - does anyone suffer from just constant pain rather than the pain "shocks" commonly associated with GPN? I'm seeing a specialist in London now, finally having found him 4 years after first having these symptoms but I want to be clear before accepting any surgery proposals that suffering from a dull pain that occasionally rises (on the scale of 1-10, 10 being the worst) rather than suffering from pain spasms/shocks that other people suffer, is 'normal' for GPN. Does anyone have this? I've been on Tegretol for 3 years now and it certainly has done its job as without it I wouldn't be here typing this, but I still have a dull pain in the right hand side of my throat that is always at a 3 or 4/10 but last year when I tinkered with the doseage, went right up to a 7/10!!

So does anyone like me just have pain ALL time time as opposed to pain attacks?

Hoping this finds you all on a relatively pain-free day :)

Granadam, this sounds very similar to the two types of trigeminal neuralgia Type 1 - shocks Type 2 is the constant pain sometimes if your really luck with the occasional shock thrown in for good measure. The tricyclic antidepressents like Amatryptaline, Imipramine and Nortriptyline are often used to manage the constant type pain for a number of facial pain conditions. Though antidepressents they reduce pain through increasing serotonin and norepinephine in the nervous system (Weigal & Casey, 2004 - Striking Back). Looking at Weigal & Casey's book, they seem to be used for a lot of the constant pain types. If you haven't got the book, it may be worth getting it, or seeing if you can get a copy through the library. t may be worth investigating with your Neuro if you can go on both for a while to see if it helps at all.

All the best :)

Hi Smiley thanks for your reply, I'm on amitriptyline already plus other anti-depressants but not for the pain. Just wondering if anyone with Glosso has the same type of pain?

Is that book Striking Back any use for GPN? I've been steering away from things related to Trigeminal really, just concentrating on information about Glosso and finding other people having the same type of symptoms.

The beauty of the Striking back book is its TN and Face pain. It gives a really good understanding in easy to read terms on how nerves operate and interact and provides information on other types of facial pain. There are a couple of really good tables on the various types and these include GPN and others. I agree better to focus on GPN specific, but these nerves seem to function similarly across neuralgias, with symptoms the key differentiator across the various nerves impacted. The book also provides a bit of insight into which conditions are caused by brain, rather than nerve dysfunction. When I read your note it just struck me the similarities between your description and ATN. The book is published by The Facial Pain Association USA. Personally, I think it provides a really good analysis of option, cause and potential treatments for facial conditions. Alternatively, there's heaps of information out on the net, just need to ensure its peer reviewed - sometimes a bit more challenging to understand - I find especially when I'm on the anti epleptics.

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I'm new to this condition. I'm 54 (female) and my prickly, burning throat started last March. My ENT hadn't a clue and suggested a tonsillectomy as some sort of cure all. That set me back a few months to recover from that major ordeal. Now I'm back to the burning throat, tight neck muscle (left) and some minor jaw and molar pain. I'm getting an MRI tomorrow to see if they can isolate the cause. My pain is like yours...constant. I don't have episodes at the present time.


Yes, maybe. I think of what I have as really long episodes; anywhere from a few hours to months in length or even years in length. When they occur there is always that pain in the ‘background’ which can surge up in pain intensity. I think it helps me to avoid my triggers; singing and cold. By avoiding those things the ‘background’ pain level goes down and when surges happen they are not as intense. I don’t ever go from no pain to a spike. ‘Background’ pain always shows up first. Spike(s) may or may not occur at any point after ‘background’ pain.

Having said that, it’s really just a theory.

You’re very lucky that Tegretol has helped you. I am unable to tolerate it or any of the other typical meds.

I’m glad that you have found specialist. I would recommend reading as many published articles as you can, print them out, and have them on hand to discuss with your specialist. This serves two puposes to my mind. 1) They might not have read the article (after all they see a large number of patients for different conditions). 2) It changes the level of your discussion if he sees that you have done your homework.

This website is a good resource.

Hi Granadam

So sorry to hear you have the constant pain. I do too. It gets especially bad when speaking or eating, or even on a stormy night like last night peaking up in the “8” range. When I wake up in the morning it is fine, all symptoms simply ramp up through the day and I more or less live “in the land of seven” for half the day or more if I am out trying to do errands, etc.

I take 3600 gabapentin, 30 baclofen, 75-150 tramacet. This keeps things to a dull roar if I stay in and don’t socialize but all bets are off otherwise and it is rather torturous to be with friends and family but too isolating not too. The whole left side of my face, throat and scalp and back of head are affected. I do not have MS.

I had an MVD for 5th and 7th a little over a year ago because compressions did show on MRI and were found during surgery and some looping of 9th right at brainstem. Then there was talk of Sectioning 9th and top strands of 10th but it has been decided that I have some sort of neuropathy and not neuralgia And that further surgery will not help and possibly make things worse. This came from the top functional neuro surgeon in Vancouver at UBC.

I am awaiting a consult with a neuro geneticist to test for a “channelopathy”. This is the latest in the field of neuropathies. It has to do with either sodium or calcium ion channels in the neurons being effected. There is quite a lot of very up to the moment information on Channelopathies on the net. Very current. You might want to check and see if there is a fit with what you’re experiencing.

The other thought is that a virus has somehow got into my cranial nerves and done damage.

I wish you luck with the London consult. Let us know.

Hi Granadam,

YES YES YES! I have constant pain now too!!!!! When first diagnosed in March 2014 with GPN I had the random attacks of the ice pick upside the head and the blow torch of heat out my ear on the right side. Since then I have gradually reached the maximum dosage of 200 mg of Topamax daily (1 - 2xday). With taking that it has dulled the sharpness and intensity of the pain (ice pick) and spread it out all over my head and made the random sneak attacks become a consistent pain I have all day long. The same goes for the blow torch out my ear, the heat sensation is all over my head and neck. I actually welcome it to the randomness of the terrorist attacks - there is no way I would ever want to go on living that way, but I agree with you I do often find myself wondering what it was like to have a pain free day. I think the worse part about it all is that I used to love rainy days and now they are the worse at aggravating the neuralgia. I also get pressure sensitivity across the eyebrows and eyelids for some weird reason becomes sensitive. But I believe it is the medication we are taking to control the symptoms of GPN that changes it from random attacks to a constant state of pain, hopefully your constant state of pain is a much duller state than your random attacks were. If not, speak to your neurologist about trying other medications. I saw a second neurologist for another opinion and that one does BOTOX injections for migraines.. I am seriously contemplating trying them after speaking with someone who takes them regularly for her migraines. Since I had migraines prior to the GPN I am a candidate. Hope this helps.


This is me

Thanks Foxy yes that really helped. Migraines?! I've been having them, in fact my GP is sending me for an MRI scan tomorrow to find out the cause of the random ones I've been stupid am I not to have connected them to GPN? I honestly thought they were just another medical problem I was having!

Does anyone else suffer bad headaches/migraines associated with GPN? Would love to know.

I too have constant dull pain, rather than the electric shock type pain. My neuro diagnosed it as Atypical Glossopharyngeal Neuralgia. I have a constant one-sided sore throat and tongue, and usually ear. It flares from about a 3 on the pain scale to around 8. I've noticed a few things that make it worse. Fever, not getting enough sleep, any type of dental work, stress, and sometimes no reason at all. I have tried all the meds over the years (have had this for 17 years). None have worked for me- I use oxycodone when the pain starts getting above 6. I have had a couple of bouts of the shock type pain- it was brutal!

I hope you find what works best for you-best of luck to you!


Hi Granadam

I have this constant GPN for 1,5 years now.

Before I had episodes of 4 to 6 days every 3 weeks or so for about 2 years.

My pain is a constant 7 of 10 without medication. Bad weather days and some foods make it even worse for a day or 2.

My neurosurgeon told me, that this is an "atypical GPN". Most doctors don`t know that this condition exists, that`s why you almost never read about it and why it is so hard to find a doc that helps you.

I had an MVD 3 month ago and it did not help at all. I am looking into having a "gamma knife" treatment or rhizotomy as a next step.

I will see 4 different doctors in november, to see what they can offer me.

I am on Tramadol with clonazepam and it takes away about 90 percent of my pain and it is the only drug combination that helps ... all others failed or made my pain worse.

Anyways ... you will have to try surgery for yourself, because if you don`t, you will never know if it helps ;-)

You look pretty young and I am 31 myself and taking pain-medication for the next 50 years (if you live this long on medication) is not an option for me.

all the best


I have both constant pain and the flare ups. The constant pain feels electric, buzzy, and 'tight' for me, and the flare ups feel somewhere between electric shock like and a cramping sensation times 10.

I've found diazepam dials down the flair ups dramatically, but duloxetine has had a really marked reduction in the constant pain. Neither of these were discovered through diagnosis thus far. The benzo thing was discovered during a desperate trip to the ER, where a sympathetic nurse tried something 'out there'' to see if it worked.

The anti depressant was found by me, after researching pain management myself on the internet and leveraging the fact that it was an 'anti depressant' to the doctor, the doctor was like 'then we can both win this way.'

When on both, I haven't had any severe attacks and my base line functioning is much improved. (speaking, eating). The pain is still there all the time, and it flares up more or less. The constant pain wears you down a lot, and having to be constantly reminded and live in fear of the next 'big' one is horrible.

Since being on topamax my pain is constant at various levels of pain and heat sensation. I am 38 diagnosed at 37 earlier this year in march. Pain started in the right side of the head but with constant rainy weather it is centered in my eyes and jaw. I can’t get in to see the neurologist till next year so I saw my gp and he recommended acupuncture and is going to set it up for my next appointment. Worth a try.