Author Topic: Pain and our reactions to it - getting taken by surprise!  (Read 22314 times)

Sunshine

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I don't know how many other people would start this type of post with the words ' All I did was....' but I have not quite managed it.

On Sunday all I did was get the Powertrike out and take Meg's for a walk around the block. There was little traffic and the weather was a bit foggy and damp so we went a little further than usual. I felt okay and was pleased with the achievement when I got back but then within half an hour my nose and forehead began to ache. I thought it would be okay because Trigeminal pain is usually on one side or the other and this pain was in the middle. It took maybe another fifteen minutes to hit and I only just managed take an anti sickness pill to stop the pain making me throw up, curtains shut and some quiet music on. I thought same old same old but no the next four hours were a blur of intense pain. Mr Sunshine bringing more painkillers and a drink, and also feeling him cuddling me hoping reprieve would come.

I would put the pain at a 9-10 but then of course I count 10 as painful enough to induce passing out into unconsiousness, and not the level an average person would describe as extreme. Later it eased to an 8 and I took the opportunity to go back downstairs and take some Ibruprofen to piggy back the Tramadol I had already taken and thereby keep me at an expected 7-8 until the next does of Tramadol was due. We had a rough night trying to sleep through the 8 and get to the next morning when it could be all blue skies and the pain back to one side scaled down to an ordinary 3-4. There was no such 'luck', and I ended up with a hot water bottle pressed against my forehead and nose. Trying to get the heat to distract the pain receptors.

When I got up this morning (Wednesday) it felt a whole lot better. As I write about it now it feels like the 'pain event' was a week ago and not so recent as the weekend, but then I am not sure I can count yesterday (Tuesday) because the pain hangover had reset my pain scale for now and what had been a 6-7 was downgraded to a 3-4. I can watch tv, browse the internet etc when it is a 3-4 so I did. Yesterday I felt like me but it was the none productive me. I realise now I avoided anything that could trigger the pain back up so no posting messages online, no pottering about doing a bit of housework and most definitely no going outside.

Today I have felt like doing more but my brain is befuddled and my coherence compromised. There is a lot I could be doing but I can't decide if I should or not. Right now 20 minutes into type this post I feel my cheek going from a 3 to a 4 Hmmm but 4 is okay though, right especially when it is almost evening and another dose of pain killers round the corner.

Up until Sunday Mr Sunshine and I were being somewhat crabby and argumentative with one another but now we just feel the love. Not the euphoric love you get when you first get together but the deeper shared love that only comes from getting through a very difficult time together. It is strange though because constant day in day out pain level from 3-7 can make me such a mardie cow and it took pain so hard and intense that I lose my sense of time and space to bring back the real love.

Hopefully at least some of that made sense. I just wonder about how we each define our own pain and live with it.

ps I just remembered yesterday I was getting sharp pain in my back and shoulder from sitting wrong and not noticing it because I was taking high doses of pain killers for the 'face/headache. Does anyone else here do that, take painkillers, it masks other pain which then is revealed when you reduce the amount of painkillers you take.

ATurtle

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #1 on: 26 Nov 2014 07:53PM »
I have to agree with the masking effect of painkillers.  I had a slight tingle/itch on my back one day when I stretched my pain killers out a bit, and thought nothing of it.  A few days later, I had a "bed day", which ended being only a lie-in, and so the morning meds were very late.  The stinging in my back was really nasty, so I decided to get down the doctors for them to have a look. >looking through a telescope<

I am now waiting for a small surgery appointment to remove a cluster of sub-cutaneous cysts. 

On the opposite side of the coin, I have noticed at times, that a bash or stretch of my shoulders, thereby causing the inflamation of the arthur itis there, the pain in the knees/hands goes up.  So it's a balancing act.   
>goodbad<
Tony.

"I choose not to place "DIS", in my ability." - Robert M. Hensel

independentgirl84

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #2 on: 26 Nov 2014 11:39PM »
Big hugs Sunshine  >hugs< >hugs<

Isn't it always the way that when things are going well you think 'well maybe I'll do a little more, little more, just a teeny bit more' and next thing, kablammo, you've overdone it and can't do anything for the next few weeks!

Glad you got out though and hopefully the (the feeling of) pride of getting out and using your trike for as long as you did helps to ease your pain! xx

Yvette

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #3 on: 27 Nov 2014 09:27AM »
Sunshine, please, please ask Mr. Sunshine to phone the doctor the next time you are in pain like that - although I hope you never are!!!

A GP can come out and give you an injection of pain killer much stronger than Tramadol   >hugs<

Fizzbw

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #4 on: 27 Nov 2014 11:51AM »
I have so much sympathy. I get attacks just like you describe, my Trigeminal nerve is totally broken. I hate to be depressing but nothing works really. You might try fentanyl but once it's a big one all I have ever found is heat pack and meditation and surviving.

Feeling utterly exhausted for several days afterwards is par for the course as well.

I've been in hospital when I've had these kind of attacks and they have never done anything. And even being put under GA does nothing (GA was incidental).

It would be very much worth talking to your GP and seeing if you can either have some oramorph or suchlike for these attacks, or have a house visit, you need to talk to them before it happens again. For me they've never been able to come out and my "local" hospital tried to give me dihydrocodiene...the next local hospital is a half hour plus drive away and I can't do that it hurts too much. My consultant said I should go there and get ketamine but that didn't even happen in his own hospital!

I do think you have some space for a better painkiller, but get some strategies in place as well that you can do yourself.

As for painkillers maskibg other pain, yes and no. I'm on fentanyl, tramadol and paracetamol and it does mask some kinds of pain but not others. The muscle damage pain in my back and leg is masked, but muscle stiffness isn't affected, and I have a knackered sacro iliac and pelvis which is helped a lot by turmeric, but I'm not sure how much it's masked by the fent etc. I have a ct scan soon which might show what's going on and whether there is any masking.

Fxxx

KizzyKazaer

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #5 on: 27 Nov 2014 05:31PM »
Sunshine and Fizzbw, in my opinion no-one should have to just 'live with' the frequency, duration and level of debilitating pain you describe from trigeminal neuralgia - was just looking at the NHS site and there are  procedures surgical and non-surgical that can be used to treat TN, have neither of you been offered options over and above just suppressing the symptoms with analgesics?

Fizzbw

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #6 on: 27 Nov 2014 07:36PM »
Thanks Kizzy. My only option, other than "living with it" is deep brain stimulation. I was refused that and had motor cortex stimulation instead which has been largely a nightmare for no real impact. My consultant retired nearly a year ago and there isn't a replacement yet. I see a pain specialist who just tells me that the consultant will be here soon.....I'm ramping up to a bad attack now so am feeling cross and depressed.....the fent isn't touching it and my parents have gone out leaving me to look after our poor puppy who had his castration op today. Luckily he seems to just want to sleep so we can do that together.

(I've tried all the anticonvulsants, had 3 MVDs and a pulsed RF treatment as well)

FXxxx

Sunshine

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #7 on: 28 Nov 2014 08:42PM »
 >bighugs< for the replies.

Quote
Isn't it always the way that when things are going well you think 'well maybe I'll do a little more, little more, just a teeny bit more' and next thing, kablammo, you've overdone it and can't do anything for the next few weeks!

This made me smile thank you :-)

Yvette,

I appreciate the advice but once the pain gets to that point it is too much for me to have anyone else around with than the people who I know love me. I think this has to do with the when my mum used to be ill and a doctor would come out be rough in manner and diagnosis with mum no further forward.

I did ask my GP about morphine last year but when she didn't seem keen I got a bit scared of the idea of taking stronger medicine and left it.

Fizzbw,

Quote
I have so much sympathy. I get attacks just like you describe, my Trigeminal nerve is totally broken. I hate to be depressing but nothing works really. You might try fentanyl but once it's a big one all I have ever found is heat pack and meditation and surviving.

I agree with you that wants it's a big one there is just no catching it and this means trying to take medication in a pre-emptive way as well is that reaction to lesser pain. I start the morning with Tramadol with the aim of taking two doses of two tablets a day and on the days this works I count it is a win. But the days it will be a Tramadol and three 400 mg of Ibruprofen, along with extra Baclofen which is more normally for CP but can help a bit with TN.

Kizzy,

Quote
was just looking at the NHS site and there are  procedures surgical and non-surgical that can be used to treat TN, have neither of you been offered options over and above just suppressing the symptoms with analgesics?

The TN I have was officially down as chronic sinusitis for a long time in which I was already signed off sick so as long as I was coping day-to-day I didn't question diagnosis because I didn't need it to be fixed enough for me to keep going to work. It was only when I asked the ENT consultant who was dealing with my Menieres disease that he looked back in my history and pretty much let me know it was probably TN the whole time.

Five years working in the call centre made the amount of episodes and degree pain go up, to the extent it is now where I have to take Tramadol every day. I think if the situation I am in hadn't started nearly 30 years ago and was more a case of healthy working person becoming affected as I am by TN overnight things might be different. The main reason I haven't pushed for surgical intervention is because I think it's too risky given I have CP (brain damage) already.

 >bighugs<

NeuralgicNeurotic

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #8 on: 28 Nov 2014 11:48PM »
Sunshine and Fizzbw - suffering from another form of neuralgia which affects a heavily innervated part of the body, I can empathise to a certain extent. I can certainly empathise with a 10 equalling loss of consciousness, although mine has responded reasonably well to medication, so things don't get quite that bad any more.

I'm glad you're feeling better, Sunshine >bighugs<

Edit - fixing smilie.
« Last Edit: 29 Nov 2014 12:19AM by NeuralgicNeurotic »

Yvette

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #9 on: 29 Nov 2014 09:49AM »
A friend of mine had several sessions of reflexology which really helped her TN.

After the first session she had pain for a few days (not severe) but it passed and the other sessions did not affect her in the same way. 

She said it was well worth experiencing a few days pain in the beginning to get long last relief.

Fizzbw

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #10 on: 29 Nov 2014 09:45PM »
Yvette, I'm glad your friend got better. It's not like that for many TN people. It's a strange disease and some people have one or two attacks and then it goes Into remission and they never get it again (which is where many of the claims of cures come from). It can then have sporadic attacks over the years, usually lasting longer and worse. In general once a person has TN then they have it forever, though some never get an attack again.

Then there are the people who respond to carbamazapine and can taper off it and then just go back on it when attacks reoccur. Then there are people who respond to surgery of several types.

Then there are the people who never go Into remission, don't respond to the drug therapy and have multiple surgeries and are pushing the boundaries of medical science desperately trying to get a cure or treatment. A lot of younger people who get TN seem to get this sort. I do.

If you could say to me, have 4 sessions of reflexology and you'll be cured, then yes it would be worth going through the pain. This being vomit and faint pain. But you can't, none can even though they have tried and I've had many other treatments which I have tried with hope in my heart and my heart in my mouth......

After nearly 12 years I've tried pretty much everything out there except decapitation and times are when I seriously consider it.

Sunshine, have you a consultant? If you are taking tramadol regularly a possible emergency top up is fentanyl lozenges (lollipops) you can very easily monitor and restrict your use of it, have a 5 min suck or longer, as needed. They taste nasty ("berry" flavour) but they get instantly into your system and can be very effective if you use then just before or as a big attack starts. I know you don't want to start taking bigger drugs but you do have a lot of ammunition still to come for the future if needed. Please do chat to me if you need more info or just a chat!

I know the not wanting strangers around either, it's hard for AB people to understand that one, but I do. The pain is all consuming and eviscerating, you are a nothing, a prehistoric blob of survival sense and nothing else.

It's funny when ever I've had surgery they fuss about you and the pain is a 3 or 4, but when you have a bad attack the pain is 9-10 (exponential scale) and the GP wouldn't even come out if you asked him.

Fx


Sunshine

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #11 on: 29 Nov 2014 11:14PM »
Fizzbw,

I am just checking in before going to bed and saw you reply  >thumbsup< , I wil add more tomorrow.
 >bighugs<

Yvette

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #12 on: 30 Nov 2014 03:07PM »
Quote
Yvette,

I appreciate the advice but once the pain gets to that point it is too much for me to have anyone else around with than the people who I know love me. I think this has to do with the when my mum used to be ill and a doctor would come out be rough in manner and diagnosis with mum no further forward.

I did ask my GP about morphine last year but when she didn't seem keen I got a bit scared of the idea of taking stronger medicine and left it.

Perhaps it would be worth considering Fizzbw's suggestions:

Quote
It would be very much worth talking to your GP and seeing if you can either have some oramorph or suchlike for these attacks, or have a house visit, you need to talk to them before it happens again.

and

Sunshine, have you a consultant? If you are taking tramadol regularly a possible emergency top up is fentanyl lozenges (lollipops) you can very easily monitor and restrict your use of it, have a 5 min suck or longer, as needed. They taste nasty ("berry" flavour) but they get instantly into your system and can be very effective if you use then just before or as a big attack starts. I know you don't want to start taking bigger drugs but you do have a lot of ammunition still to come for the future if needed.

Sunshine

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #13 on: 30 Nov 2014 10:40PM »
Yvette,

Reflexology is a good idea and I know people it worked on but having CP means my feet are twitchy and super ticklish which increases muscle spasms in my calves and can go on to affect my arms and torso too.

Fizzbw,

I wanted to write more last night and then got in a bit of a funk doing other stuff until I realise I had not even been in the garden since last week. I took the bull by the horns and went outside and played ball with Megs for a while. The sun was shining and it was not as cold and damp so it was a 'steady' thing to have done.

Quote
Please do chat to me if you need more info or just a chat!

 >bighugs< I am struggling because between Menieres and TN I am finding it hard to go out so it is making going to the doctors feel too much at the moment. My GP is good and often says things like 'you are doing marvelously well'. A while back I was having a harder time in life than I am now and I tried to talk about it to her and it came out all wrong and made me feel like a pratt. I do better when I am being optimistic and thinking as little as possible about my health except how it is in the moment and hours of today eg if I hurt I will complain but I have learnt to avoid the snotfest of crying my heart out about it. Which is not to say I don't cry because I do.

You make good points about remission  >thumbsup< For me everyday is a new day, my routine means I end up not being much affected by some pain or no pain because either way it is always TN roulette. I might be hurting but go do some garden anyway and the pain lessens or I might clean the kitchen sink and on that particular day the cleaning spray triggers server TN.

The lollipops for pain are a really good idea and you have my permission to remind me now and then until I mention asking my GP.

I think I mentioned a lot in my opening post for this thread so I especially appreciate the replies.

 >spoonarmy<

ps Apart from the ENT Consultant telling me I have TN and prescribing Amatriptyline in low does to see if it helps I have not seen a Consultant about TN
« Last Edit: 30 Nov 2014 10:49PM by Sunshine »

Hurtyback

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Re: Pain and our reactions to it - getting taken by surprise!
« Reply #14 on: 30 Nov 2014 11:08PM »
Sunshine  >hugs<  New treatments come along frequently (sometimes general pain relief, sometimes specific things for TN) so it might be worth seeing a specialist if you haven't done so for a while. My GOP's sometimes used to write to a consultant and say something along the lines of 'This lady has persistent TM and has tried this, that and the other treatments. Please will you see her if you think there is anything you can offer, or advise me as to my next course of action'. If your GP would do that then you would only need to go and see the consultant if they think they have anything that might help.