Who do you talk too?

Hi all I have recently joined the group although I have been on the forums for a while.

I have TN,ATN,GN and ON so like many of us on here I have some terrible days.

I take 900 mg Gabapentin 3 times daily, 400 mg Tegretol twice a day, Cymbalta 60 mg and 300mg Lamotrigine in the evenings.
This is as well as sublingual Buprenorphine that I take on a daily basis.

I just wondered at the times when you feel like you can’t take the pain anymore or things just get on top of you.

Who do you talk too?

I find it very hard to talk to my partner as I don’t want to make her feel bad and to be honest she always asks me about my headache which tells me she doesn’t understand what it is I go through or indeed how bad the pain is.

And being a man makes the situation that little bit harder I feel.

I tend to stay on my own in another room which doesn’t help I know. What do you do or recommend.

Thanks

Dave

Hi there, I know how you feel! It is very hard to describe this excruciating pain to those that care deeply but have no concept of what we go through! I've found it very helpful though to steer my partner towards lots of info on the web, both from a textbook point of view as well as other sufferers views and experiences. This I have done on a drip feed basis over many months as I don't know about you but those not suffering with this only have a so high tolerance for info at any one time! Now he's more informed I find him much more understanding and all I have to do to communicate my agony is grunt our agreed sign and he knows what I need!! I find blocking it out when its not happening though to be the best way of enjoying those pain free times so don't spend a lot of time talking about it anymore but I'm so glad he's understanding and sympathetic now,it makes the pain just a little easier to bear! I hope this helps a little! Thinking of you and hoping you're having a good day today.

Hi Dave! You really have been unlucky, with all the versions piled on top of one another - and what a stack of meds you're on. I'm amazed you're awake through that lot! My heart goes out to you.

I get what you are saying about not talking to your partner, but it is actually not fair on her to keep the extent of your suffering secret. It's better to share it. You don't have to bang on about it all day, but she's not a mind reader and she will only feel useless and excluded if you lock yourself away. Also, in all fairness, you can't expect her to understand it's more than a simple headache if you don't tell her that it is!

Lastly, rest assured it's no easier for a woman than a man. I'm a woman and I don't like to be a drag, or to moan all day, nor do I like to be waited on hand and foot (okay, maybe a little bit!) or to break down in tears or be snapping all the time. We have to look brave and strong too, you know! Also, bear in mind that female sufferers often have to look after husbands, children, do housework and shop when really all they want to do is curl up and die.

It's a cr*ppy illness for everyone.

Hi Cathy and woman with the electric teeth (what a great name).

I agree with both points and completely understand them too. I have tried for many years to get my partner to read up on our condition in one way or another with little to no luck.

My problem is that I do not have any pain free days and that gets in the way a lot as you both know. I tried for a long time to explain to my partner about my pain, how it feels, how much it affects me and so on all with no luck.

I keep it to myself more to stop the tears from flowing now rather than not to be fair to her but because if I say the words (I Can’t Cope) then it makes it that much harder for me.

I don’t mean too be selfish and lord knows I could do with some understanding a lot of the time but I do accept what you are saying.

I can also see that it is hard for women too and I wasn’t saying it isn’t in any way.

As men we are expected to be strong, provide for our families and always be their for them. Two of those I am no longer, I can’t provide for my family as most of the time I struggle to function. I am no longer strong as all my strength is taken by these illnesses so I feel useless as it is. Talking to my partner also makes me feel more useless to her than I already am.

That’s all I meant.

Thanks for your replies

Dave

Oh dear I really feel for you, not having any understanding despite many attempts to explain is hard, very hard. Thank goodness for these forums, at least everyone on here understands and knows exactly what you're going through and all the frustrations, guilt and suffering it brings. Maybe try jumping on here whenever you need to talk, you'll normally get a pretty quick response and it definitely beats trying to speak when you're in pain! Typing I always find is quite therapeutic as long as the sound is off, and so is the boggle app incidentally! Anything to focus on that puts your focus off the pain helps I find although it does take a lot of concentration!! Can I just ask though if you were able to chose how your partner were to react to you what would that be, that is how do you wish she would be with you? I only ask cos I found when I asked myself that that the answer was actually that I just wanted to be left alone but the important thing was to not be expected anything of when the pains bad ie I didn't want to be put on a guilt trip as well as everything else when I feel too bad to be normal!

Can I ask how long you've had the condition/s, Dave? You sound quite badly depressed, and who wouldn't be? I'm asking because I had unrelenting pain for ten months before I went into a period of 'remission' (still on some Carbamazepine that I'm trying to phase down, but don't know how low I'll get), and there is absolutely no doubt that the unrelenting nature of the pain is one of the biggest problems, although personally I think Western medicine makes it worse, with their poor attitude to the disease; it more or less guarantees depression. And don't forget, these are literally mind-altering drugs; they can make you depressed, and worse, all by themselves.

How long you've had to put up with this makes a big difference. Are you receiving PIP? I assume you can't work. When I was awarded PIP it made a huge difference to me because you don't need to feel so guilty about not pulling your weight. And, of course, it eases the financial burden. Let me know how long you've been suffering and if you've had any periods of remission. We've all been where you are now and the one thing we can share is hints and tips of how to get through it till some light appears!

ETA: Sorry, just saw that you have said you've been trying for years to talk your girlfriend into reading up on the condition. You poor thing. How many years have you been plagued with this? Any periods of remission during that time?

Belgy1972 said:

Hi Cathy and woman with the electric teeth (what a great name).

I agree with both points and completely understand them too. I have tried for many years to get my partner to read up on our condition in one way or another with little to no luck.

My problem is that I do not have any pain free days and that gets in the way a lot as you both know. I tried for a long time to explain to my partner about my pain, how it feels, how much it affects me and so on all with no luck.

I keep it to myself more to stop the tears from flowing now rather than not to be fair to her but because if I say the words (I Can't Cope) then it makes it that much harder for me.

I don't mean too be selfish and lord knows I could do with some understanding a lot of the time but I do accept what you are saying.

I can also see that it is hard for women too and I wasn't saying it isn't in any way.

As men we are expected to be strong, provide for our families and always be their for them. Two of those I am no longer, I can't provide for my family as most of the time I struggle to function. I am no longer strong as all my strength is taken by these illnesses so I feel useless as it is. Talking to my partner also makes me feel more useless to her than I already am.

That's all I meant.

Thanks for your replies

Dave

Hi and thank you to both of you for your replies, I started with 2 of my conditions in 2001 and the other problems came along in 2007 so I have been at it a while unfortunately. If you were to ask me if I am depressed I would say no although I know I am down in many ways.



In answer to your question Cathy. I would just like some understanding that I can not do the things I once could and that I don’t choose to be this way. Also that I don’t just have a headache, sore face or a sore throat. I’m sure if she understood that I am in immense pain most of the day and night in fact I rarely manage more thane 1and a half hours sleep per night.



It’s not her fault and I do understand that she can’t feel my pain.



Woman with electric teeth, yes I do receive PIP and that does indeed help financially. Since 2003 I have never had a single day that I am not in agony.



I appreciate that I will think differently from week to week as I sometimes feel things aren’t that bad compared to some (which is true) but I also can’t help wondering how long either I or my body can cope.



Thank you both for replying



Dave

That's a long time, Dave, and I think you deserve a great deal of kudos for surviving so well, so long. So take a (gentle!) back pat from me for being so strong. I hope you know I am not being condescending here, because I've been there and I actually do know how you feel and genuinely do admire you getting through that and still being seen standing.

I assume though your pain is going up and down somewhat? And the meds are surely knocking the edge off the worst of it by now? Or are they losing potency - is that the problem?

Have you discussed MVDs or any other surgical procedures yet? I would think you are very definitely in the running for an MVD if you wanted to go down that route. It may well be salvation for you.

I assume you've had an MRI? What did they find?

Hi, I know your not being condescending don’t worry. I have a severe allergy to anaesthetics so no doctor will touch me anyway I have tried in the past. Truth is I do understand they all say they don’t want to risk my life.

My initial problems all started with an accident at work which also left me with severe nerve damage to my hips and feet so I don’t even get out of my house apart from hospital visits.

As for my pain going up and down, your right that is the case. Problem is that the pain is either severe or excruciating. I’m not looking for sympathy and I know on this forum I will receive only empathy as we are all in the same situation to a degree for which I am extremely grateful.

The Medes I take I have been taking so long that we have had to go through every medication there is to keep a slight edge of the pain as my body is also very tolerant to them.

The only thing that gets me through is morphine but I hate taking it as I have to get to a point where I am near unconscious for it to have any effect and I don’t like being so selfish that I can not spend time with my wife and children.

I think I’m just at a point where I feel my life dissqpearing and having less and less control over myself. Truth is I have no right to moan as my partner now has to go out to work then come home and look after me for the rest of the day. All in all I am glad to be able to talk to people on here and am very grateful to you for taking the time to reply to me.

I also feel very rude in the fact that obviously yourself and Cathy are here for a reason and that is that you have problems with the same issues yourselfs.
So thank you both for taking the time.

Dave

Hi Dave, don't become a hermit :-) It's called living with Trigeminal Neuralgia with the emphasis on "living". Try to enjoy life and remember, if this is happening to a regular "normal" human being then it must be normal!

I know words are easy but I say this as a fellow sufferer, 400mg to 800mg per day. I wrote a small website which may help - www.giantmouse.com Don't worry it's all free :-) I don't spend enough time on this site or indeed on my own.

I live in Rochester, Kent. Feel free to email if you want. Cheers and all the best, Colin

Hi GM! You do know there's no website there, right? It's just a domain name advertising site???

GiantMouse said:

Hi Dave, don't become a hermit :-) It's called living with Trigeminal Neuralgia with the emphasis on "living". Try to enjoy life and remember, if this is happening to a regular "normal" human being then it must be normal!

I know words are easy but I say this as a fellow sufferer, 400mg to 800mg per day. I wrote a small website which may help - www.giantmouse.com Don't worry it's all free :-) I don't spend enough time on this site or indeed on my own.

I live in Rochester, Kent. Feel free to email if you want. Cheers and all the best, Colin



Woman with the electric teeth said:

Hi GM! You do know there's no website there, right? It's just a domain name advertising site???

GiantMouse said:


Oops! My fault. I changed domain providers but forgot to mod the link :-( I'll get the old brain working again and sort it. Sorry for the confusion.