TN-The most painful condition known to man-A response to Tina S

I was thinking about your post the other day and I've figured out what's annoyed me about it. It's because it's pointless.

The first half is an unhelpful diatribe trying to somehow put the pain of trigeminal neuralgia into a little box- as if everyone's experience of it is exactly the same (and not that bad according to you- maybe that is just your experience of it- not that bad)

You then go on to discuss people you know who have died. We have all had that experience. Watching the ones we love slowly dying. They have end of life medication like morphine which greatly eases that pain. It is not the same to compare the pain of dying and your body shutting down with a lifelong pain that you have to manage as you go about your daily business. They are two very different things. Everything is relative. If you get splashed by a bus on the way to an interview do you immediately thing of the latest nationwide flood? Doubt it.

You then challenge us to all get the nerves in our faces cut to show how much we are REALLY suffering. We aren't in pain we are obviously exaggerating.

You then appear to be saying that people under 60 only get type 2 trigeminal neuralgia which wouldn't have been recognised long ago. I'm 29 with type 1 and type 2. what makes you think type 2 isn't as bad anyway?

PS- I'm incredibly grateful to be living in a country with medical care- but thanks for reminding us to be grateful

Your points regarding quality of life- some of us have better quality of life than others. I don't consider myself disabled because I am not but sometimes the TN can be disabling it takes up all your head space it hurts like nothing else and sometimes the meds mess with your mind. As for your ' You aren't special and you aren't more delicate' actually some people are. I am a 29 year old female mentally I am strong and fine. I am not delicate no but sometimes I feel it. There are others here who ARE more delicate. Fact.

Your statement 'I work in foreclosures and have to drive around all day and stay on my toes enough to outrun dogs and face potentially deadly situations every single day all day long while taking meds that make me dizzy and sleepy'

It is good that the only effect of TN you seem to have is the effects of your meds. My meds are working ok too at the moment I also feel very lucky. Others are not so lucky. It is also your choice to work there. I don't actually feel remotely sorry for you. I hope the dogs are friendly...

I have to quote this whole passage because it's ridiculous and very badly thought out:

'This is a support group, I come here for hugs and kisses, not to have my ass kicked-

What you are hoping for is about as useful as going to an AA meeting so you can sit around talking about how great it is to be drunk. It's just pissing in the wind and not the least bit useful.Nobody should ever support someone feeling sorry for themselves or give you tips on how to be a better loser. If you want that, you're looking to hurt yourself.When I first got here, I wrote about whether or not I belong here. I'm still not sure, because I haven't figured out if this is a real support group or just a bunch of people who want to cry about how nobody understands. Umm... we should all understand... and understand why it's important not to let our sympathy get toxic to us and all the new sufferers out there. the stages of grief apply here as much as anywhere, but we can't lose sight of our responsibilty to move through them and encourage others to do the same'

Comparing this support group to an alcoholics anonymous meeting is insulting. I think you also do not see the positivity of the members- perhaps this is because you are a naturally negative person. Noone here has chosen to have TN, an alcoholic chooses to drink, so it is not like sitting around talking about how great it is to be drunk. I think you got rather carried away trying to be a smartarse.

'Noone should ever support someone feeling sorry for themselves or give you tips on how to be a better loser'

Clearly someone has been bought up to look after their own emotional needs and noone elses- since when was it not the duty of a human being to support and care for another human being who is feeling sad. To call that person a loser is intolerable and insensitive.

It's all very well talking about people whining but I see a lot of positivity on this forum- and people who very much care. You are not one of them.

Lastly you talk about helping people move through the various stages of grief.....somehow don't think 'lifecoach' is the right career for you but thanks for offering.

Lastly if it was not your intention to come across sounding like a dictator and you were just having a bad day then hello :) start again.


You aren’t toxic. Reading about peoples suffering isn’t toxic. People getting upset or having a whinge etc it really helps it’s an outlet for them and they are talking to people who totally get it. I like reading the positive things and the sad things I want to help any way I can. I’d like to think when I have a weak helpless day someone will be there. It’s hard burdening friends and family or feeling like you are burdening them. The last thing people want to feel is they can’t even vent on a support group! Wishing you all well and lots of love xxx

So glad you posted this. I saw the "other" post and it made my blood boil. I can be a bit hot tempered and I don't take any sh*t, so I thought it best to keep my mouth shut on that post, because you all might have seen the "southern girl" come out in me, LOL.

My blog post, "What support means to me." came about as a result of the blog post referenced in this entry. I agree it was harshly worded, but I tried to see her perspective Personally, I would hope you all would tell me what I need to hear, not always what I want to hear. I know two people who got TN due to cancerous tumors pressing on the nerve so I can not say TN will not kill you as I realize some people struggle with TN problems that I can not even begin to understand. I am very direct in how I talk to people, but I am learning to temper my words with kindness. I would ask that you all be patient with me, but do not let me get away with my garbage either.

Well said marie,
I was pretty upset with this blog as well and didnt bother to respond because i thought it might fall on deaf ears to a person who would write such a presumptuous and uninformed blog. Ive been healing from surgery and didnt want to waste my energy on it. Im so glad someone took the time though, to address all of the rude, ignorant and hurtful comments that where written. I think of people that 1st come to this site. They may be Scared, in pain, confused, depressed, suicidal or so many other things people with TN experience. They usually have no one that understand them and they come to this site and read that type of blog. That could set someone over the edge. Its such a potentially damaging blog. I was so thrilled when i came here and found people who understood me after 7 years. I feel that only people with kindness, helpfulness, understanding and positivity have a place here. If you have nothing good to say then dont say anything. Thankyou for saying what im sure many of us were thinking. Take care and i hope you are doing well and are painfree. Jacqueline

I just try to be positive but not always that easy. I believe mine was a result of injury but have other symptoms. I have a bony growth on my hand and behind my right ear. I have also just developed an immovable lump on the back of my neck which apparently is not a cyst or lymph node. This morning I woke up with itchy swollen eyes and red patches on my face an I vomited. I am nauseous fairly often. The tn and jaw lock could be due to something more serious and hopefully they will now push forward my MRI or I will be going private. Not feeling too positive today. Wishing with all my heart it’s injury or that if it’s something else it won’t be serious. Hard to always remain positive.

The swollen itchy eyes rash and vomiting I know could be my medicine but I’ve been on carbamazepine now for a little while and thought I was fine

Thank you for posting this, I do believe tough love can be good at times…but some days you need to be able to offload without being judged as a loser…

I have to say when I read the blog mentioned I nearly didn’t sign up for this site, however the responses encouraged me that not everyone is of this mentality.

I personally do not see giving someone a virtual hug or positive words as toxic, but as part of being a support group to someone who may just need to hear someone cares and does not judge them :slight_smile:

Thanks for your comment Julie and everyone else I really needed that to pop up in my inbox this morning. I’m back to square one. It’s 7.45am 2nd day of stopping the carbamazepine as severley allergic to it the doctor believes. It was helping so much because today it’s back and I feel angry. Last night I shouted ‘f*** off’ at it. It never does listen. On a brighter note I have my MRI booked for 5th feb so looks like I was worrying unnecessarily. Don’t know what it’s like in America but in the Uk it’s not easy to get an MRI and they’ve insisted I try all these drugs first. It’s been a constant anxiety. I have just moved to a new area having ended the relationship I was in for 12 years the only man I was ever with or ever loved. Sometimes I feel very very alone. Unsure of the choices I’ve made but know this illness has taken over my thinking for me. I want to just get better now.

Hi Marie, sorry to hear you’re having such a rough time of it at the moment. What a nightmare to be allergic to a drug which was helping control the pain, hopefully they can find an alternative which doesn’t give you the nasty side effects. Hope the MRI goes well and shows something which can be treated, it’s always odd to hope that they find something wrong but I think most people who have had them come away disappointed if they are clear. I hope you have family to support you through this time, don’t try to go it alone, hang on in there, be stubborn and continue to tell it to f*** off, who knows maybe one day it’ll take the hint! Big hugs x

Marie, im sorry you are going through such a terrible pain with your pain and all the changes in your personal life. I hope you are able to find s

Oops, im on my ipod and everything is so close together. Pushed wrong button. Anyway i hope you find some meds to replace the tegretol and find some relief from the TN pain. Its so much harder to deal with life with the pain. Do you have someone to be there for you? If there is anyway i can help, ( via internet) please let me know. You can vent to me anytime. Take care and take one day at a time. Thats about all we can do with this disorder. Jacqueline

Hi Marie, just to say I hope your feeling better x

Can I please ask who did your surgery, I'm scared to death but also excited to think that they might be able to help me, I have taking every medication possible, tegretol, lyrica, gambapenten, plus many more. I was prescribed nortriptyline which seem to help until about the 3rd or 4th day, I started stuttering really bad and I couldn't get my works out, I went home from work crying my eyes out. I have had this pain for years thinking it was my teeth, I've had 2 teeth pulled, multiple route canals that had to redone numerous times because they didn't get it all or the pain was just as bad. I have had multiple mental breakdowns with the medications for your nerves, I forget what I'm doing or if I did something, can't concentrate or remember things, one time I totally lost my memory and crieds for so many hours it was the worst I have ever been through. I started with 800 Ibuprofen when ruined my stomach, I've been on Vicodin, tramadol, percocet 10-325 MS-Contin, Dilaudid now. I have missed more work in the last few years getting tons of dental work done and now maybe it wasn't even the teeth. I have traveled to specialist out of the area for my teeth. Spent more money than I had, I had to wait to be seen lots of time just the bill could be paid in full first. Why is it that dentist's/oral surgeon don't more about this. My dentist just kept me hanging for several years doing procedure after procedure. UGh not very happy with all that pain especially when I kept asking for some type of referral, I didn't know who I wanted to see and he didn't either.