Another TN attack. No wonder they call it the sucide disease.

[Lou_inpain]

Hi All

My trigeminal neuralgia is out of control. So bad that I've handed all my painkillers over to my husband because at this stage I don't trust myself not to swallow the whole box to get some relief.

Lou xx

[Bananas5]

I am soorry Lou I don't want to say anything patronising like well done for handing all drugs to hubby.

Does ice help by numbing the area? Jeremy Kyle to distract you?

I can't begin to imagine what you are dealing with. Any help from GP? Pharmacist? Pain clinic?

Will you make do with a soppy cuddle from a beautiful Scottish thinking about spring day?

Sent with love

Pat x

[evony123 in reply to Bananas5]

nice!

[Ktchard]

I'm sorry you are in so much pain lou, any way you could get any stronger med's for breakthrough pain. If it's that bad surley you could do with your medications being reviewed. I do feel for you hun. I am going through a bad patch atm & struggle. Take care 💖

[RAYJAYC]

Hi Lou

I totally understand the sheer desperation of seriously contemplating taking all those little tablets sat in that box, waiting to be devoured, without any concern of the aftermath!

Then reality jolts me to competency and I think about the mess I'd leave behind!

You're doing the right thing giving those tablets of destruction to your husband - is he ok to soothe you through the bad times until you can take something else?

It's so unfair & unjust that you've hit a bad patch - can your hubby call the pain team secretaries demanding that someone helps you via whichever method they've got available?

If they've clocked off for the weekend - do you have an out of hours GP service that can be 'told' that you need pain relief - NOW (please)?

I know that getting a hit of some good stuff can sometimes be the catalyst to feeling a little bit ok for a while, which in turn, makes your pain management strategies (that usually drag you through each day) more beneficial. Your usual pain meds may then start to help you - plus, the frazzled GP who had to come and see you may well have prescribed something for the weekend!!

Come Monday, the telephone in the pain secretaries' office will have lost its voice because you've been calling since the crack o' dawn to plead for an appointment! Tell them straight that is not acceptable - no one should have to deal with this much pain!!

If however, you're more level headed than me, you may just post a comment on a forum, just because, because, your pain is bad at the moment and you just wanted to let off a little steam!!

I don't really have any useful advice I'm afraid - pain is pain, is pain etc and it's c%@p!!

Hope you feel better soon (what a useful sentiment!)

RAYJAYC

[Bananas5 in reply to RAYJAYC]

As a carer for somoen who has suffered chronic pain for over 30 yrs it is often hard for the spouse to help. I too have take responsibility for David's drugs and it isn't easy. When he has been crawling round the floor, banging his head on the walls, begging for me to make it stop...having those drugs hidden is not fair on that person. I have experienced a number of accasions when one minute he is quiet and the next almost drunkenly violant trying to get that pain relief.

Yes in the old days - duty Doc would carry something very strong to inject him which knocked him out. Not any more. Too much risk of being mugged or the like.

I would never not take his drugs away if I thought there was the slightest chance of him self medicating but as I saw it is not a responsibilty any pain clinic or GP should put on anyone.

x

[RAYJAYC in reply to Bananas5]

Yep, it's an on going conversation in the house - they're my meds but someone else has to take responsibility for them sometimes.

I'm not suicidal but at risk??

I don't think there's a clear answer in a 'normal competency' situation but I wanted Lou to see that yes it's normal to give them, sometimes dastardly, medications over to someone else at times of despair that's all.

I was in no way implying a carer/relative gets an easy ride......

RAYJAYC

[Bananas5 in reply to RAYJAYC]

Sorry if I gave that impression. Didn't mean too. But all too often David's pain consultant has said Oh pat can do so and so. Or GP when we were loonging at changing David's meds and it was going to be hard for himm. They shouldn't assume that I can do it.

I might say something to GP just to find out his reaction.

Pat x

[RAYJAYC in reply to Bananas5]

Absolutely definitely Paton, do that - if they tell us, the chronic pain sufferers, that WE have to do the 'mind bending stuff' to manage our pain and no one else can do it for us, they then shouldn't expect someone else to do the other stuff!!

The support, of course can be there but if we're deemed competent to manage it and our medication (some of which would make some doctors wince) then why should they expect it to be alongside other's help?

Or is that the cunning plan? If they know there's someone else in the home then they'll HAVE to help?

I live alone so most of the time, I am left to deal with it all - at the bad times my poor mum has to come over to cope with my 'just wanting to die'.

Why should a mother have to hear that?

I then hear the 'guilt' card being played (not from my mum - she's pleading against it)

No definitive answer or solution........

RAYJAYC

[Bananas5 in reply to RAYJAYC]

You hit the nail on the head. Someone else - friends, family neighbour to help?

But if you are anyone asked me to do it for them and need help - I would have absolutely no hesitation in saying yes of course.

And I have been doing it for David for many years - only through the dark times - but will continue as needed.

And probably cos i do love him really!!!

x

[evony123 in reply to RAYJAYC]

well said

[Redhots7]

Oh my, I am so sorry! PAIN SUCKS! Have you sought a 2nd opinion ? Surly there is something you can take for relief !

[earthwitch]

Are you just on painkillers? I have a friend who has TN and she could never get any relief from even the strongest painkillers, but did get really good relief from Tegretol (its an antiepilepsy drug but really works at managing the nerve pain from TN, though it does take a little while to kick in and you have to take it regularly). If your GP won't consider trying something like this, insist on being referred to a neurologist as they will also have more options for treating this kind of awful nerve pain.

Really good you had the presence of mind to hand over your painkillers though. That shows huge strength, in spite of your terrible pain.

[humanbean]

Have you ever had any blood tests for minerals and vitamins? Someone on another HU forum to this, who also had TN, found out that she had low vitamin B12. She supplemented to get up to optimal levels and her TN pain diminished a lot. She also improved other nutrient levels, like folate, vitamin D and iron. Her GP had absolutely no idea why doing this had any effect on her TN.

There are no guarantees this will be relevant or helpful to anyone else, but it would be worth doing some investigating of your own.

Just thought I would pass it on.

[evony123 in reply to humanbean]

well said, btw, there wassa mention of aluminium in a later post (i aint been well, no joke intended)

maybe issa same?

[evony123 in reply to humanbean]

aluminium comment, maybe you could passit on? i dunno, im silver surfer

[Coastwalker]

Look into a vitamin deficiency, Lou_ inpain.

Vitamins can actually cure pains, also some are anti inflammatory. Doctors rarely tell you about vitamin cures.

(Not talking about your low dose multivitamins from your local supermarket or H&B)

85% of us in Uk are either low or deficient in vitamin D3 and don't know it.

[Lou_inpain]

Hi all

Thanks for the comments. It's taken me nearly 3 days to get over this last attack. Hopefully I'm at the end of the line with this horrible disease as I've exhausted so many pain meds and allergic to all the usual epilepsy drugs that help my neurologist thinks surgery is the only option. I've kind of fell out with my pain consultant as he wanted me to manage this pain through psychology etc but I sought a second opinion - all be it a private opinion and my neurologist is thinking surgery is now my only option. Funny all of you should mention vitamins as my GP requested a B12 and Folate test after a full blood count.

I'm so tiny and underweight now that they are afraid of over medicating me incase it lowers my seizure threshold - I don't have epilepsy but have had seizures due to being over medicated.

I have asked my hubby and mum and dad for help. I just need to text them a code word and they will come running to watch me.

This sounds awful and I hate to admit this but all I could think is that if I could just make it downstairs and get the Stanley knife and slice my wrist it would be all over soon and now that I'm on blood thinners it wouldn't take long.

I do not want to die but when the pain is at 10/10 and it lasts for hours / days I can't think about how bright my future is, how much I have to live for, my beautiful son. All I can think about is ending the pain.

This really is the most awful confession of a pain patient.

Lou xx

[clare86 in reply to Lou_inpain]

It sounds like you need to go to A&E with the pain being so severe and you having suicidal thoughts.

[evony123 in reply to Lou_inpain]

clutching at straws here bud but there was a recent post about pots/pans etc aluminium and diff metals.

if your atta lose maybe worth checking?

be safe, jim

[RAYJAYC]

Hi Lou

It's your situation that's awful. Your feelings of just wanting the pain to end are to me anyway, normal.

Pain that lasts and lasts overtakes everything & anything so you're physically unable to think rationally, practically or purposefully.

Don't wind yourself up in knots with guilt - it sounds like your husband and parents understand that it gnaws away at you so, as you say, come running on hearing the code word.

Hoping it starts to at least begin to release its vice like grip on you soon.

RAYJAYC

[Lou_inpain in reply to RAYJAYC]

Thanks Ray xx

[Lou_inpain]

That's awful. So sorry to hear that. Do you think paying private to see a neurologist would help get something done. I've been living in this hell for nearly 2 years and seen everyone - even a neurologist in the nhs but it wasn't until I paid privately to see one of the top consultants that I'm finally getting the hope of a cure.

Lou cx

[Gypsywife]

I have had Trigeminal neuralgia, my husband also... We were given Carbamazepine , as a drug called Tegretol, and for both of us this did work in one full course of treatment.

It is an appalling pain, and very frightening. I do not know what meds you are on, and maybe you have been prescribed these...but just in case you havent tried them, I thought the info may help. Very sorry for you.hope you get some relief soon.

[Lou_inpain in reply to Gypsywife]

Unfortunately I suffered a major allergic reaction to this drug. Thanks for your reply. Xxx

[Gypsywife]

I have just read all the comments here, Lou, which I did not have time to do before writing my suggestion. I am so so sorry for you. What always strikes me is that somewhere, there must be a solution to this...and if it is an operation, ....the sooner the better. The hospital seems like the obvious place to be when you are in awful pain, as I have been with cellulitis. I couldnt deal with it at home, so I called for an ambulance, and in hospital, they did at least put me on a drip and get the pain under control. since then, i have turned up at A &E, and told them I need to see someone very quickly. I so hope this can be solved for you very soon. TN pain is like nothing else...

[Lou_inpain in reply to Gypsywife]

Thanks so much for your kind words. I appreciate your sympathy and I really hope I get a solution ASAP.

[evony123]

thats sux woman, good you thought first.

no rds lefts? surely must be summat?