Hello all,
I have had so many people doubt that I am in pain and even my parents think I lie about it sometimes, even after my ER visit last week, and I am frustrated. What has been a helpful tool to help your loved ones understand just how bad the pain is and how easy the triggers are??
It’s very difficult I know. You can only guide them to information sites on the Internet, or take them to a physicians visit. Coming here where others give you support whenever you feel like your out there by yourself. Trying to validate your self and your pain to others may exacerbate your pain, so my advice is not to. I am so sorry this is an added issue you have to deal with. Hoping this is a more peaceful day for you.
I don’t have an answer for you but I do want to comment, I deal with the same issue, I can be laid out with an ice pack wrapped around my head (which helps me some) and the act like I have a little headache or something. Very frustrating, I am sooooo glad I found this site, I felt like I was the only one that had this. Even most if the Doctors don’t know anything about it, I had one say I saw someone with that once. At least my boss has a fybromyalgia like thing so he kind of understands.
Anyway I hope you can find some answers here.
I found this somewhere and copy pasted last year, not my words and wish I could remember who wrote it! Very helpful! Mimi
Caring for someone with Trigeminal Neuralgia
This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.
It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.
TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.
There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.
It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!
The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!
You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.
This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.
If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.
Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.
To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.
The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them.
The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.
The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!
In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!
Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.
In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.
The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.
As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure.
This is perfect,Thank you Mimi. Just what I need to explain what happened during Easter dinner with my children,
Thanks for that article its perfect. Wish it would fit on a card for when asked "what's wrong?"
Thanks Mimi,
This is great, it really spells it all out.
What a great write up. I really need one that just pertains to my friends. Many of them have just disappeared, and I think it’s mostly because they just don’t know what to do or say. I moved three hours away from Austin, where I’d spent nearly my entire life, about a year before this hit so to complicate things it’s difficult for them to come see me. My best friend has really stepped up and has come see me several times since my first surgery and has tried to explain to everyone back home about my condition. She has planned a trip to bring some of my other close friends the weekend before my birthday in a few weeks and I hope I’m doing a little better so I can really enjoy seeing them.
Ok, I’m rambling. I just took my lunchtime meds lol
Anyway, someone should write up something similar that would make it easier to explain to friends and not just family and care takers.
So I sent my mom this and she was like “Liz, I have arthritis, I know what chronic pain is.” I wanted to laugh but wasn’t sure if it would hurt. She also said to “deal with it and live my life” which is hard to do when the simplest breeze, like the AC, happens and I am in horrible pain. For one day, I wish she would have this pain so she knew!
I only use this very rarely - but have you told your mom this did not have the name of the "Suicide Disease" for nothing? That is/was the politically incorrect nickname for this damn monster ---
I have arthritis too --- it's a picnic to TN --- it is THE most painful disease known in the medical field ( but so little is known)
OK - sawing your arm off with a chainsaw is less pain that TN!
How far do we have to go? It's so many family and friends that cannot understand -- you can only educate her if she wants it - find your support here or see if you have a local support group
Go to Google Images and Print off an image of arthritis and an Image of TN and leave it out for her to see!
My son was born with high functioning autism --- took forevvvvvver to get family and friends to understand, believe in the invisible disability and support us!
Sorry - no more soapbox!
Thank you, I think she is not wanting to accept it is why she acts the way she does! It’s so frustrating but she doesn’t want to think about it so I can’t make her learn!
And yes, she knows that it is nick named the suicide disease
hey liz, i dont know how u are with drawing but i made a picture to try to show where and and what the pain feels like..to give people an idea of what is going on beneath the skin that they cannot see that has to be dealth with silently..or while complaining.
people who havent had tn do not understand its that simple..sure a chronic pain sufferer can understand the feeling of living which a chronic pain but there are different types of pain wether muscular, in the joints, in the nerves or whatnot so alot of people arent going to get it annoyingly.
Most of my family appreciate that i am living with abnormal ammounts of discomfort cos they had ten years of complaining XD or seeing me cry...no one is that good of an actor..and god what a boring and horrible act it would be to put on!!
You can take a look on my page to see my picture though im not sure if we share the same symptoms but u will be surprised how people respond to visual aids..i guess what you cant see just doesnt seem 'that big of a deal' to others.
one last thing..please...i hope soon you can stop feeling like you have to prove to tohers what is wrong or that something is wrong..now i must admit im being an enormous hypocrite...because with some people..i have been trying to 'justify' my pains and explain myself to them and with some people, no matter how you explain they are not sympathetic at ALL and some rude and thoughtless. I have come to realise after a certain point with some people..just dont bother wasting your energy and upsetting yourself..use that for something else.
I have learned the hard way that living with tn sucks, medical appointments sucks but most of all, spendign your free time when NOT at a doctors or in pain , trying to explain your pain sucks more because then everything is TN..everything and that is the worst thing of all.
(wow i need to take my own advice..god XD)
Where your mom is concerned i think sometimes in families where a few people have chronic illnesses either they sympathise very well to eachother or its like whos sicker than who..not a competition but..if your in pain and your mom has maybe been in pain for far longer even if its less pain it can seem silly when other people complain and they can be snippy without intending to. Take for example..if i had a terrible week of pain then my sister skypes me and says 'i had a headache today, soo painful u have no idea how awful i feel', internally im thinknig..yeah but i do cos i have far worse pain...but i just bite my tongue and shut up cos pain is relative..i guess just be patient with your mum like u would have to be with any other person who doesnt seem to udnerstand how terrible this can be for you..its hard to understand what you dont know.
ok RANT OVER..apologies for poor writing..punctuation...etc etc etc..blame tegretol XD hope any of my ramble helped even a tiny bit..i trailed off..also tegretols fault.
wishing you have a pain free day, mel
I can completely relate to what you’ve just said. My mom has suffered from migraines for DECADES, and I have watched her in pain all that time. I’ve probably even been guilty of doubting her pain once or twice even though I’ve suffered my whole life with migraines too. I think it has to do with the person’s own internal mental state. My mom couldn’t be better about being sympathetic and there for me and helpful, but every once in awhile if I’m already on edge with the pain and she says something like “I understand. I’ve had migraines my whole life” I want to scream at her and say “you DON’T understand! There’s no possible way you could understand! Nobody understands!” and storm off like a child, but I manage to hold it together and realize she is just doing her best. It’s really the way we internalize other people’s reactions to us that makes us feel certain ways. Maybe if you try to tell yourself mentally “what she just said ACTUALLY means she is trying her best” instead of internalizing it in a negative way it will help. Even if its not the truth or how you feel, you can change it to be your truth for now until she comes around. There’s no way for her to ever really fully grasp what you are going through. It’s scary for our loved ones and a lot of them just don’t know what to say.
If I’m not already on a medication induced tangent I’m about to be lol I understand what it feels like when people you care about are down right rude about it too. I moved from Austin to The woodlands about three years ago and was hit with this and diagnosed pretty quickly about a year later. Very few people have made the 3 hour drive to come and see me. I understand people have busy lives and what not. This one girl I thought I was really close with hadn’t said do much as a peep to me since I found out I needed my second mvd in February. Meanehile people i havent seen in forever are sending flowers and even past professors and my pilsted instructer made it to visit in the hospital! So about a week ago I sent a text saying how hurt I was that she couldn’t even send a short text asking how I was. She sent back a text saying I was being ridiculous and was so condescending and ride I couldn’t even believe it. I was gobsmacked! I decided pretty quickly to write off that friendship even though we’d been friends for years. Some people are just incapable of empathy and those people aren’t worth your time or energy.
I have completely lost track of where this was all going, but the people who love you will try to understand things in their own way. The only thing that can do us try to relate it to pain that they have experienced. I know when I was just suffering from migraines I thought I couldn’t possible feel anything worse than that. Of course my mom and I have gone back and figured out I’ve been having attacks and remissions of this for a very long time and we just lumped them in with my migraines, but still you get the point. People can only understand to a certain point anyway unless they have TN and have experienced this same pain.
Someone posted on my Facebook the other day that if god could cure his dads cancer nerve pain should be easy. I wanted to virtually punch him in the face. No this isn’t terminal, but I’m going to live with this for the rest of my life. I’m only 32. That’s a REALLY long time.
I think I’ve completely lost my point again and now I’m just sharing random stories of people not understanding and I’m not sure if that’s helpful or not. I guess the point is that it’s really hard for people, even the ones that are trying really hard and mean well, to grasp the concept of the amount of pain we are in and that even if we have surgeries or drug ourselves to the gills or get a remission this is always going to be there.
Please excuse any and all typos and tangents as I am on 3000mg neurontin and 800mg tegretol and recovering from my second mvd
Hi Liz
I’ve been struggling with a way to respond to you that isn’t full of my on battles and emotions on this topic. It really helped me to email the piece Mimi sent you to my friends and families although most of people closest had already done some technical reading about TN. It’s your mother’s response that has triggered some of my internal rants! I have a theory that people can only understand pain to the levels that they have personally experienced. After that it is out of the bounds of comprehension. After that only empathy can work. Not everybody has the same same capacity for empathy. And sadly, suspicion abounds. I found the following this morning and will share it. Perhaps further information will be a bit of an eye opener for her. It helps explain why the trigeminal pain is so bad.
This was written Feb 2013 by a DDS from a pain clinic:
"The reason that trigeminal system defects have such a major effect on substance P levels is that the trigeminal nerve has 100 times more dense “C’ fibers (pain fibers) than any other nerve in the body. Secondly, the trigeminal is closer to the brain than any other sensory nerve, and hence has more influence. Defects within the trigeminal nerve distribution zone cause elevated tonicity within the trigeminal, and subsequently alters trigeminal sensory output and over time modifies the trigeminal system."
Perhaps you could open a conversation with her by first asking her to tell you how she experiences her chronic pain. Battles of “My pain is worse than yours” are not very productive. But open conversations increase empathy.
Peace and Kindness
Bellalarke
Send them links to info or print it out for them and get them to read it. Then see if they have any questions for you. If they still don't get it, then you need to concentrate on YOURSELF. Much love and hugs, Donna
My mother has read stuff, she didn’t think too much of it and said to get over it and live life.
I don’t know that there is anything you can do to bring someone around if they are being that obstinate. I’m sorry :-(. I would suggest finding someone else to lean on.
Printing it and carrying it around to share.