Hi to anyone. Had my MRA scan and results show nothing I know I should be happy but its took me to my lowest ebb...I now have no answer as to why I have this constant pain and feel like my light has been put out. No one understands, I'm tetchy and even tried to explain to my husband earlier this week how I was feeling I'm angry and all it will take is one person to say the wrong thing to me and I will flip....he said he understood and was prepared for the fall out and last nite it happened....so his "prepared for it" was to fall out with me and we are now not speaking......I feel so alone, in pain and hurting..........we hardly ever argue in 14 years probably only a handful of falling outs thought he was my best friend.....obviously when the tough gets going the what I thought was the tough bails out....crying as I'm typing......Why is this happening to me not only is this TN taking me as a person, my personality, stopping me doing my favourite past times its making my feel sad I'm up and down like a yo yo............or is it the gaberpentine??? excuse my spelling as I now have no abiltiy to spell either..........None of my family or my friends understand I put a smile on my face and I'm going to work so they think I'm ok and I'm not. I want to shout from the roof tops give me a break and make allowances for my mood swings but think even if I did they'd probably just ignor me.........sorry folks for putting my feelings on here but dont know what else to do where to turn or who to talk to. thanks for listening Jules
Hi Dancing Queen,
I'm so sorry to hear about what your going through. My TN didn't show up on the MRI scan either. However, I know that I have it, and from all that I've read sometimes it just doesn't show up. I know that I have it as the pregabalin that I'm on helps it, and when I was on Tegretol that took the pain away. I am currently on 300mgs of Pregabalin and 20mgs of amitryptiline.
It's hard for people who don't have what we have to understand the stress and pain that it causes. Please please please don't let it get you down too much. There is a letter on the main site that I emailed to my closest people that exlained exactly how I feel every day and every minute. That would be a good letter to send to your loved ones. Please don't let the TN take away your spirit etc. I know it's hard, God knows we all know that it's hard, but hang in there and it does get better at times. Sometimes it's just harder than others.
Blessings to you.
Marcie
thanks for your kind words Marcie how do I find your letter I'm pretty new to all this blog stuff I dont even do facebook.
Hiya,
Its in the face pain info tab on the main list above and it's called 'How do I help my loved ones to understand' I believe. It's not my letter, but it's a letter that was written by a lady who needed her loved ones to understand how it felt. It's actually a brilliant letter. I sent it to my loved ones.
Marcie
Dancing Queen said:
thanks for your kind words Marcie how do I find your letter I'm pretty new to all this blog stuff I dont even do facebook.
Hi Dancing Queen,
Sorry I directed you to the wrong bit. Not sure what part I got the letter/article from now. But I've inboxed you the article/letter. Hope that it brings you some comfort and that your family members or loved ones are able to learn somewhat how you feel.
Marcie
Hey Jules,
just take a breath hun...remind yourself that you are definitely not alone...we are all here, ready willing & able to help you and/or listen to you...if you can't rant here amongst your peers, where can you? :-)
What you're describing is not uncommon, in fact, you are in the same flaming stranded life boat that I'm in at the moment! I too felt like my world collapsed around me last month when my neurosurgeon told me that my scan was inconclusive. & he couldn't pin-point exactly where my nerve was trapped/damaged. He was going on about another diagnosis on top of my TN, something about cluster migraines, etc & needing to take another look at my scan with the radiologist before deciding on a course of action. I wasn't even really listening after that because whilst he was seemingly unaware of it, he had just pulled the rug right out from under me & I just felt like I was drowning. He snuffed out the only light at the end of my tunnel! :-(
It is a shock or you to find out that the one possibility of relief has been pulled out of your grasp...it is natural & totally understandable to feel robbed! Maybe your husband hasn't made that connection just yet...you've just had your one hope of a chance to return to something close to normal ripped away from you at the last minute.
The other side of it is that he too has to grieve for the loss of that hope from the point of view that he, as your other half, your husband, your best friend (& in his eyes, your protector) is helpless. There is nothing he can do to take away your pain, to prevent you from being "hurt". He now has to struggle with that frustration whilst still watching you in agony...the same way you feel when your child is hurting. He's only arguing with you because he cares about you so much.
TN makes our daily life very stressful & the search for relief can make our usually "normal" relationships even more intense than usual...maybe he just needs to "step back", have a wee bit of space, to see things more clearly...I don't think he's bailing on you hun, he just needs to regroup & I'll bet that he'll be back by your side before you know it....plus Jules, let's face it, men simply can't cope as well as we can...hehehe!
Your feelings at the moment are completely justifiable...and you are not alone in feeling that anger & sense of loss & hopelessness...believe me! :) but...we will get through this...eventually!! It will not be easy...God knows but, you can't loose hope just yet...hold on! :-)
We are always here & we can always understand...because we're in the same boat as you! :-) So never worry or apologise for venting...I'm pretty sure that we all do it from time to time, I know I definitely do! ;-)
Take care hunni!! :-) xoxoxoxo
Hi Deanne
Thanks For taking the time to give me an insight into your thoughts, whilst I dont wish anyone to be going through this its kinda nice that someone else has felt what its like to be inside me...I'm feeling alone and unloved and very sorry for myself. I have a good friend that has had an illness in the past not TN but she said today that she felt exactly the same way and is going to try and help my husband understand, hes got to for the first time in 14 years he didnt ring me this morning when he got to work and that hurt, its strange as i'm normally one of those private people and cover things up with a smile and a joke so well that even those closest dont know theres anything wrong with me but I am really struggling at the moment, I dont think I've ever felt so low. I completely got what you said about no light at the end of the tunnel and the rug being pulled from under you. I dont know how everyone on here copes with the thought of having this TN thing for years I'm only 22 weeks in and cant cope now just want my life and my husband back on my side. I'm not looking for sympathy from anyone just that understanding of whats its like to live in my head. You sound like an amazing woman Deanne just like so many amazing people on this site. Thank you a million times xx
Thanks Marcie I am going to edit it to what fits my situation and give it a go. I've got nothing to lose. XXX
Marcie said:
Hi Dancing Queen,
Sorry I directed you to the wrong bit. Not sure what part I got the letter/article from now. But I've inboxed you the article/letter. Hope that it brings you some comfort and that your family members or loved ones are able to learn somewhat how you feel.
Marcie
Queenie,
When my wife got annoyed and resentful, I asked her to read up on the condition I have. Geniculate Neuralgia is similar to TG, but I feel as though as I have an Ice Pick or Screwdriver pushed into my ear. It's as unbearable.
After he has read up a little, and appreciates what you're going through, there may be a bit more understanding. The problem my wife says, is that she can't SEE what's causing the pain, can't help me, and so feels helpless. Perhaps your partner may be more sympathetic, once he reads other people's stories he will understand, too?
Just a thought,
Saint Paul
Hey Jules,
just thought I'd check in with you, see how things are going for you at the minute. How are you keeping? How's the pain levels these days & how are things at home? I hope that you're feeling a bit better, have you had any progress with your treatment? Just know that we are thinking of you, we can't do much to help unfortunately but we do care about each other.
Keep well & chin up,
Dee xo
Hey Deanne
Good to hear from you and thanks for thinking of me....to answer some of your questions pain levels are ever increasing and have in the last month gone upto 5 x 300mg of Gaberpentin which reduces pain down to just a dull permanent ache which I have learned to cope with. My neurologist that I have only seen once when he requested an MRA scan has tried to sign me off without even seeing me again when I emailed asking a load of questions it appears that he hasnt even looked at my scans so how he can possible sign me off I do not know...but I am on his case so I will see where I go from here with that one. Family life has settled a bit and family (or some of them) are making allowances for my fuzzy head thing and are at least trying to be more understanding when I forget things or leaving me alone when the pain gets to unbearable. Not been on here for a while as after being at work some days I'm just that tired that I just want to just go to bed. Anyway enough of me bleating on hows you and your life at the moment?
Again thanks for thinking of me.
Jules xx
No worries hun, glad to hear some things have settled for you. I wouldn't let the neurologist off on that, I'd keep hounding him for answers/help!
I know what you mean about the fuzzy thing, lol, it drives me mental at times but on other occasions, my two kids will take the right "proverbial" outta me, lol & it is good to be able to laugh at some aspect of this! ;)
Anyway, as me dad always says, lol, "Take it easy...'n' if ye get it easy ;) take it twice!" pmsl
keep in touch,
Dee xo :)
Hahaha! your Dad sounds like a great guy, and yes my friends and kids do to take the proverbial when I say the wrong words or cant even get out what I want to say...I've got one mate who is excellant at knowing what a thingy mobob is. Take care xx
Dancing Queen. The biggest problem is that it is not a visible condition. I am one of the lucky one (if having TN can ever be considered lucky) in the fact that my wife is a nurse. The best way I have of describing the condition is to ask someone to imagine the pain of someone sticking a dagger into say the leg until it touches the bone and then twisting it around and around. But as soon as the dagger is removed there is no mark and the pain has gone away. If they cannot imagine this level of pain they will certainly have trouble imagining the pain of TN.
It is a very rare condition so it is very difficult to find good, clear information on the web, but it is possible. Good luck, and I hope he soon comes around to realise how much he really loves you even with this he still has you.
Sorry Dancing Queen, got side tracked by work. Anyway, to continue with what I was saying. Simply ask someone if you could stick a dagger into them and twist as hard as possible, but then tell them not to worry because as soon as you pull the dagger out there will be no mark and the pain will have gone. They will of course say no but at least they will start to realise just what we are going through each and every day. I really hope that by now you have resolved your problems as it sounds like you have had a wonderful relationship until now.