Living With Facial Pain

PTSD? (Post Traumatic Stress Disorder)

Hi all,

I am new to this site and to the diagnosis of having TN, which isn’t confirmed yet as I am waiting to see a Neurologist.

I have been suffering for over 15 years with headaches and toothache but my symptoms were always discarded until about 4 years ago when a catalogue of health issues left me debilitated and I saw a consultant through my company medical insurance.

I had an MRI on my neck which found degeneration and the pain was put down to muscular issues. Physiotherapy was torturous, but ‘no pain, no gain’ and eventually my body broke and I was then diagnosed by one physician with ME… 2 years later, unable to work, constant daily attacks, many visits to GP’s, dentists, consultants, A&E, physio’s etc finally someone listened and has referred me to a Neurologist.

Honestly, I do not hold much hope of help, after 10 years of the pain getting worse and feeling like I am being fobbed off as a hypochondriac, I live in fear that the next time my body tortures itself, I will add to this condition’s unwanted statistic. (Surprised I haven’t already.)

I have read all about peoples’ struggles and advice but nobody really appears to mention the psychological impact and i’m not a medical expert, but how does TN and PTSD not go hand in hand, especially if your pain is that excruciating, you are begging for the suffering to end?

Are people whom have been treated, found that their Neurologist is as conscious of your emotional health as well as, of course, your physical health?

Hey Dave,
“…feeling like I am being fobbed off as a hypochondriac…” Ohh man, do I know what that’s like and there’s nothing nice about it whatsoever. I too have been given more diagnosis than I can count on my fingers (and toes), TN being one of them. A neurologist ‘may’ be able to help. BUT do not and I mean DO NOT be going to the appointment with any great expectations. If you do not have an expectation you cannot be let down when they say “We can’t find anything…”

The psychological impact for many of us with rare conditions can be massive. Some doctors can be real fast in labelling an issue, that can not be defined, as a psych issue. “There’s nothing wrong, it’s all in your head” I was told. The problem for me was they were correct, when after many years of consults and being told it was all a psych issue they finally did a brain scan and came back with “Ohh look what we found…” like it was all something new. I’d been telling them for years, decades, there was an issue only to be fobbed off, then when they finally found there was a physical problem it was like some huge new discovery. I was beyond angry. And their response was ‘Ohh well don’t blame us…’ I didn’t actually label it all as PTSD but I can truly see why people would consider it to be PTSD.

But, I’m sorry to say, from my experience, not many neuro’s have any great experience nor knowledge in regard to psych health nor emotional health. Neurologists work on 90% theory ie 'What do the scans show?" “What do the blood tests show?” but very little to nothing in regard to the psychological impact of their diagnosis. Pain is VERY subjective, each individual can comprehend the same pain in a very different way. Pain cannot be measured easily, so using pain as a gauge is open to interpretation.

An example of this is a good friend of mine telling me ‘a toothache is the worst pain in the world’, I wanted to laugh. In my opinion, give me a toothache any day over the headaches I suffer through. But my friend has never had to endure such pain and if a toothache is as bad as he has had, his pain scale of 10 is a toothache. A toothache is a 5 on my scale, so how can he compare?? He can’t. And again, from my experience, neuro’s may have seen patients in severe pain, but very few have ever actually experienced such pain themselves.

This is why I recommend ‘DO NOT be going to the appointment with any great expectations’. This way at least if you get a good response, it’s a bonus. But if the response is not so great, you are not heavily disappointed. I didn’t do this initially and the disappointment was MASSIVE and I fell into an awful dark pit, so don’t be doing that. Some medicos make out they have all of the answers. I’ll let you in on a little secret… ….They don’t know it all, at all, despite their own egos making out that they do. Unfortunately many of us here know this because we too have been in the same place as you are now. So come talk to us, we know from personal experience and not some university textbook.

Merl from the Moderator Support Team

Very well said. Thanks

Hi Dave, don’t know if it will comfort you or not, but I have NEVER found a doctor, not even the good ones, who showed any concern for the mental & emotional ramifications of an illness, never mind your emotional state independently. I don’t know whether it’s a leftover from old medical training that the mind & the body are two very separate things (they’re not) or old medical beliefs that the mind didn’t influence the body (it does, very heavily - even your gut is in direct connection with your brain), or as I more often suspect, there is very poor resources for mental health (in the NHS here in the UK) and it is overburdened as it is, so they don’t want to bring it up if they can help it. If you are struggling mentally - and you sound as if you may be quite badly depressed - then you need to broach that subject separately with your GP, and tell them the help you need - either counselling or a ‘talking’ therapy or to try some different antidepressants. Don’t even think about discussing it with a neurologist or any kind of higher consultant as nothing outside their field is in their remit and them dead-facing you is only likely to put you off. Your GP is the man, or you can self-refer to some clinics. You should be able to Google that for your area. Best of luck!

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Thank you Merl.

Unfortunately based on current experience, I do not expect/hope for much, of anything, but that is where my problem lies.

I was looking for some sort of hope that there will be an end to this suffering.

Thank you for the advice Woman_with_the_elect but my depression/anger management is not a primary mental health issue; it is a symptom of the pain, discomfort and hopelessness that I am in 24-7…

I have tried counselling, pathetic! Pain management - I’d like them to ‘learn to love it’! Accident and Emergency, three times in the last year I have begged for help after being told by my GP and Dentist that there was nothing more they could do. Therapists, well CBT/NLP/mindfulness are great tools. However, I haven’t seen them with a TN diagnosis. Maxillofacial consultant can’t even diagnose TN when one of my nerves in the lower jaw is painfully protruding? I can’t even bring myself to mention BUPA!!

My newest GP (as the one who diagnosed TN wouldn’t refer me to a neurologist until at least 8 weeks after being prescribed carbamazepine???) has at least referred me to a neurologist (with a huge nudge), tried to offer pain management and therapy but ignored me when I said I wanted my suffering to end and even told me to stop all medication… woohoo!!!

Unfortunately, I have zero faith in any medical practitioners and Dignitas is now on my radar.

I suggested PTSD because really I have Pre Traumatic Stress Syndrome. I know at some point in the near future I will be at a 10 on my torture scale and I do not look forward to that at all and the truth is, every episode is getting progressively worse.

It makes no difference what’s causing your depression, Dave - depression is depression. If you are feeling suicidal then you need to get help with it. If you’ve already tried counselling then you need to go down the route of medication. But it sounds like what’s really bothering you is no-one is ‘fixing’ your pain, is that right? And that your depression is a direct consequence of both the pain and the anger/hopelessness you’re feeling because no-one is offering you a solution?

You say your doc made you wait 8 weeks after starting Carbamazepine. This would likely be to see if it worked. Docs use this as a diagnosis tool for TN - if anti-convulsants take the pain away (or lower it) then you have TN. If they don’t - you don’t. That’s the rough thinking. Am I to assume Carbamazepine didn’t work for you? If that’s the case, did you get no relief at all? If not, that would suggest it isn’t TN, which might explain your doc’s reluctance to send you to a neurologist.

Just to give you a point of reference, when I first got TN I got it severely, with electric shocks firing off in my mouth constantly, the pain so bad it would bring me, literally, to my knees. I lost weight because I couldn’t eat and ended up living off Ready Brek. But about a week into taking Carbamazepine I lost the shocks. So I went from severe pain to manageable pain - hence it’s a clear-cut case of TN.

You conclude by saying you have PTSD (I’m assuming you believe caused by the TN itself?) but I’m not sure what you think a doc would do for you if that was the case, other than send you for counselling, which you’ve already had. What is it you actually want from the docs? I know it’s difficult, but you have to be focussed on the end goal and not muddy the water for yourself. If it’s a diagnosis you want, then go all out for that and push for it. If it’s pain meds, then push for them. And if you are not coping emotionally, then you need to push for help with that. But do them all separately. Doctors work to very strict timetables and if you expect them to deal with complex issues, they will just try and get rid of you. It also runs a danger, which it sounds like you’ve encountered, of you coming across like someone neurotic because you are overwhelming your doc/s with symptoms and complaints. They hate complexity. Ironic, I know, but sadly true. Write everything down, itemise it just to clarify what it is you really need for yourself, and then see them about one problem at a time. It will also make it much easier for you to deal with when you can see it broken down into manageable issues. Very best of luck to you.

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Hey Dave,
It is completely understandable that you wish for an end to the pain. As I say pain is one of those things that trying to place a quantitative measure on is impossible and often others simply do not understand this fact. It sounds to me that you have gone down all of the ‘normal’ routes to obtain answers yourself, but had very little in the way of success.

Unfortunately the advise you’ve been given in regard to ceasing all medications is a common one. The theory is that they wish to start with a clean canvas before adding other medications to your system. As I’m sure you are aware many medications interact with each other and by starting with a ‘clean canvas’ the medicos can get a bit of a clearer picture in regard to which meds assist. The fact is, this sounds great in theory. But then what are you, the patient, to do for pain in that time and this needs to be discussed with your medical team.

Because all, of what I would call the ‘normal’ dr’s, haven’t been of benefit to you I do wonder if you may need someone like a medical advocate to follow you through all the processes. I say this as some medicos seem to ignore the patients view because (as it was put to me) “Well, you’re just the patient…” by having a medically qualified advocate they can talk to other medicos on the same level. I have found this to be of benefit after many years of ‘bashing my head against the brick wall’ of medical arrogance ie ‘I’m the dr, so I know it all…’ If they truly did know it all my situation would have been dealt with appropriately decades ago and I possibly wouldn’t be in the position I am now. And yes, I do still have some angst in regard to the route I have had to take due to their medical arrogance. That angst, although I ‘try’ (not very successfully at times) to hide it, it does shine through. When we get written off time and again how can we not become a little cynical about the medical profession. And this is where an advocate can take the emotion out of it when corresponding with specialists. I live in a city in Australia, but here the neuro community is VERY small. When they see ‘Dr X’ has given a diagnosis they seem less than simply reluctant to contradict that diagnosis. Having that separation between patient and dr via an advocate can be of benefit.

For many years prior to my own present situation I worked with people with disabilities and have known a few who have considered Dignitas. Although their situations were often extremely difficult and often painful, obtaining the access and rights available via Dignitas was often difficult and overwhelming. I would sincerely urge you to FULLY investigate any such option completely.

Merl from the Moderator Support Team

I feel like PTSD gets relegated to victims of war so often and for those of us with severe PTSD due to our experiences with pain and doctors we just get kinda pushed to the side. This diagnosis of TN feels like a life sentence and it’s very hard to emotionally grasp everything that you have to deal with. Having a particularly hard day with physical and emotional pain today. Needed to come on the forum and be reminded that I’m not in this alone.