In so much pain

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1

am in so much pain at the moment, over the last 3 weeks my pain levels have gone through the roof, having episodes each day that feels like i must be dying, its so scary how much this hurts.

i feel absolutely useless at the moment, incapable of doing anything at all , i get into work and sit there most of the day just sobbing quitely to myself, at home im useless around my kids, cant play with them, cant even read them there bedtime story, i have to go and hide somewhere as i really dont want them to see me like this, they know im poorly but i think it would be quite distressing for them to see me in such a state when the pain levels go haywire. they are only 5 + 4 so they dont have much of a grasp that daddy is not like he used to be, they know my face hurts, its all i talk about these days! it seems somedays that all i am is pain, i cant remember who i used to be. just over 12 months now, a few days here and there respite but not at any point have i been completely pain free.

have been on oxcarbazepine since april and at first it seemed to be working and controlling the constant ache/burning grinding pain which is 24/7, it didnt stop it by any stretch but seemed to be reducing it and even the mild shocks of 7/8 were reduced, then 3 weeks ago it just stopped being effective and every minute of every day is a struggle.

am so tired and exhausted all the time. am waiting to hear from neurologist, neurosurgeon and pain management clinic, there is lots in the pipe line but thats no help to me today or tomorrow, i am so grateful for my kids and my wife and that is why i get up every day and fight, sometimes i just dont want to, its not fair on my wife, she gets so distressed to see me in such a state, i cant imagine how hard it must be, i dont know what i would do in her shoes.

if i had an off switch i would go and curl up in a dark corner and just turn me off, i must be faulty, i cant find the manufacturers warranty.

everyone on here must have days like this, i know there is always something to lift you up, i just cant find mine at the moment.

think its partly due to my guilt (i know its not my fault) at seeming like a bad parent (i know im not) but my kids just want me back, i want me back. none of my family, no one unless they have experienced this, can even begin to grasp what we go through, had 2 episodes yesterday and i seem to be right on the edge today, its almost teasing me, a flash of pain every few minutes, just to remind me its there and taunting me.

im scared, tired and very fed up

2

Oh Borris, I feel so badly for you. Is going to the emergency department an option?

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So today it has settled a bit, attacks a little less frequent and down to a 7/8 pain wise, however I am having pain on the left as well, constant ache all around top of jaw/ear and upto temple area with flashes of pain along cheekbone but on both sides. Left possibly slightly less than right first one was both at the same time, felt like my face was in a vice and since after every flash on the right I get one straight after on the left. Too be honest it has cheered me up today, have cried and been raging over last couple of days and today just making me laugh at it, what can it do next? Got mri week today and then appointment with neurosurgeon, neurologist and doctor and nurse from pain clinic and appointment with gp tomorrow. am certainly getting my money's worth from my national insurance contributions.

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I'm so sorry for you, and certainly know where you are coming from. I too have days like that, as recently as last Friday I was sobbing in a fetal position telling my husband I thought I was going to die. I knew I wasn't because this happens all too often, and here I am. The only thing in the world that works for me is sleep. The ER has nothing on my sleep cocktail. I usually double my Ativan, which only amounts to 1 mg and take it with my Trileptal, Neurontin, Baclofen and Norvasc. Works everytime. I do know I miss out on life, but it's either sleep or contemplate ways to take myself out when it's "that" bad. I hope you can find a medication that works for you. I think we all struggle to find the right ones. I take all those meds and still have daily pain, sometimes more sometimes less. There will be better days. I hope they find you soon.

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Hi, borris. Sounds terrible.

Are you upped enough on your meds? Do they increase dosage when you hit a new tolerance threshold? I have been on 1200 mg Carbamazepine for over a year, but now I hit a new threshold so my dosage is about to be increased. That usually works for me, I was on a 1000 mg for c. a year too. It took a couple of months, and I think 600 mg for me to be pain free to begin with. Everyone has an individual tolerance, so make sure you are patient (I know it is hard).
My secret tips are

- Heat packs are the only thing that always feel good on and for my face - across my forehead, around my jaw, behind my neck... (Neck tension is really connected to the ATN in me). If you don't have them but are desperate, rice in a sock works fine. Heat in the microwave a couple of minutes.

- Restorative yoga poses (such as these: http://www.yogajournal.com/article/health/13-poses-to-relieve-tension/)

- The Alexander technique restorative pose (http://alexandertechnique.com/constructiverest/)

- Believe it or not, when I am unable to sit/lie still from ATN, the only thing that will give me some relief is exercise. Anything that gives me blood circulation to the head, really. Even if I don't feel in the mood, but I know it works for me, and you may find me doing jumping jacks at odd hours!

- And then the most effective: distraction therapy. Netflix and the Nintendo DS are my best friends sometimes.

I am sorry you have to feel guilty for your kids. I don't have children myself, and I have recently been thinking that with the degenerative nature of this condition, I am not likely to have them. Although I love kids, I cannot picture what it must be like to have to be attentive and caring when I am in deep pain. I deeply sympathise.


With time, you do find your own strategies and you should get your life back. In the meantime, we are here to help! Browse the forum for tips and make friends. This is an endless reservoir of relevant reads, it seems.

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dear Borris,

It is terrible what you are going through; I wished I could help you, but I know from my own experience that in fact no one can help us when we are in pain; we only want it to stop and go away and never come back. Be brave and search courage in your loved ones . I hope doctors will find a drug to help us .

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I cried reading this. I was just diagnosed last night but have had "episodes" of TN for the past 6 months and it is definitely getting worse and quickly. I too am dealing with guilt and feeling useless in the eyes of my 6 year old daughter. I would love to say more but my pain right this second is reaching unbearable levels...time for a percocet and bed...I hope.