Hello all, i am hoping you are all doing ok and experiencing more good days than bad. Fingers crossed and prayers for everyone suffering.
My question is after almost 9 months of constant suffering can I expect to have a period of remission? When I saw the neurologist I asked if I could ever expect to be pain free or to have a period of remission and he said no, I nearly cried. Am awaiting to hear back from neurologist about getting infiltration injections, not really sure what to expect or even what they are going to be injecting me with, can anyone offer any insight as to what I can expect from those injections?
After such a long relentless period am I likely to get a break from this? Its such a random condition and doesnt seem to be following any patterns or routine, I havent been able to locate any triggers that set it off, have identified certain things that make it worse during an episode but nothing that sets it off. My GP is clueless and since paying my neurologist I havent heard from him.
Has anyone else suffered for a long period and then had a period of remission?
I am suffering from ATN and TN, currently on oxcarzepine, zomorph and oral morpheine, none of which really helps very much. Just going through the motions.
I wish we would all go into permanent remission. I'm sorry that you are having such a terrible time and so much pain.
Remission does happen...I had a remission for eight years. Complete remission. But now a year and a half ATN and three months ago it went bilateral. I am lucky that my medication works pretty well for me.
Short answer is yes. Longer answer is ; not for everyone. There have been a few discussions on it here and there seems to be two camps! I personally go in and out of it for weeks or months at a time. I hope you're in the camp that does.
Do you ever have any pain-free days? Since TN pain is so unpredictable, I don't understand how your doctor can tell you that you won't have remissions.
I've only had this a couple of months, so I've never had a period of remission. I'm curious as to how you know you are having one. As I am on Tegretol (800mg) it controls the electric shock sensation almost 100%, so how would I know? Is it because all the other little annoyances, like toothache and so forth, go away? Or do you just get a general sense that something's changed? I'm really curious, so that I, hopefully, can know what to expect if I'm lucky enough to get some time off.
Pretty much all of the above for me. I just, when I'm lucky, feel fairly normal! Just a few twinges out of the blue, a little numbness and life goes on.
hi Jasmine, since it started I think maybe 4/5 completely pain free days, not together though. best run i have had so far was 2 days, went to pick my little boy up from school, forgot my hat, wind got me just wrong and left me with tears streaming down my face trying not to make a scene while waiting for him to come out. joy!
i have some mornings where it doesnt kick in until later in the day and sometimes other way round, wake up to it but then by end of the day its worn its self out.
the doctor seemed to suggest that as i havent had a remission since it started its less and less likely now that i will. i cant believe how hard this is and tiring, it effects everything. i just want my life back, stop living in fear of pain. does the longer it go on for without a proper period of remission make it less likely that i will experience one? the neurologist seemed to suggest this was the case.
Hi Boris,
I was diagnosed in March 2002, it started as classic TN1 on my right side upper branch, I started Tegretol, felt relief within 24-48 hrs I was already on a low dose of clonazepam for leg spasms at the time, within a few weeks/months I had TN2 on my left side.
So bilateral TN.
We switched to Tegretol CR slow release, and increased the dose slowly, this started to make a huge difference in pain coverage.
By 7 months post diagnosis ( aprox.) I was pain free on the meds…within 6-8 weeks my Neuro suggested trying to wean off the meds slowly. Which I did.
By 9 months or so I was Med free and TN free=remission!
I had an 8 year remission on my right.
A 10 year remission on my left.
I didn’t know much about TN back then so didn’t know it could come.back…
My right side responded well to the Tegretol CR again, but when my left side came back it was aggressive, progressive and not responding to meds.
Each one of us shares similarities with TN but we all experience it differently …I think in some ways that’s a good thing ONLY because it’s not A-B it leaves the door open for any and ALL possibilities…most importantly HOPE …for long lasting remissions…
I wish I knew what caused my lengthy remission back then…sure do wish it happened again…
So do you get brave enough to go without medication? It's a very recent relief for me, but just from the 2 or 3 weeks I had the disease before medication, I couldn't face potentially going back to that pain just to find out if the pain had gone! Part of the horror of it was the sheer terror in not knowing when the bolts would strike. That's what I don't get about remission - how do know you're sufficiently well to risk coming off the meds? (Assuming you do!)
catwoman said:
Pretty much all of the above for me. I just, when I'm lucky, feel fairly normal! Just a few twinges out of the blue, a little numbness and life goes on.
Hi Boris, I see you say you're on meds but you still feel pain? Has it always been like that? Or did the meds work at first then stop? I assume you're still working with your doctor to get the meds to work, or are you already on very high doses? I'm just wondering why you're in pain if you're on meds. I know some unlucky people do suffer that way, but I thought that was years down the line when the condition had deteriorated badly. No-one suggested an op to you yet?
borris said:
hi Jasmine, since it started I think maybe 4/5 completely pain free days, not together though. best run i have had so far was 2 days, went to pick my little boy up from school, forgot my hat, wind got me just wrong and left me with tears streaming down my face trying not to make a scene while waiting for him to come out. joy!
i have some mornings where it doesnt kick in until later in the day and sometimes other way round, wake up to it but then by end of the day its worn its self out.
the doctor seemed to suggest that as i havent had a remission since it started its less and less likely now that i will. i cant believe how hard this is and tiring, it effects everything. i just want my life back, stop living in fear of pain. does the longer it go on for without a proper period of remission make it less likely that i will experience one? the neurologist seemed to suggest this was the case.
From all the meds I have had since the start, only 2 have provided any sort of relief for any sort of time, pregablin and oxcarbazepine. These at any level have not completely stopped the pain, they have reduced the frequency and severity but nothing for the background pain and I still get 10+ flashes a day that stop me in my tracks.
I have done all the normal meds, started on amytriptline and titrated up with no benefit, then carbamazapine but they made me sick, itchy and affected my vision so stopped, gabapentin to max dose did nothing but give me awful mood swings and made me very depressed, then I had a bit of luck with pregablin that lasted about 3 1/2 months, then got a cold and that seemed to set it off again and now on oxy. Again initially it seemed to be working, started them mid April, currently on 1500mg and the pain intensity and frequency is increasing.
have seen a neurologist for initial consultation, start of may, he has not responded to email or phone calls for last few weeks, he did mention about having infiltration injections but since I haven't heard from him no idea what is happening regarding that now.
Have had mri and it didn't show anything so I have been told not a candidate for any operations. My gp is hopeless, when I last spoke to him he said what do I want him to do for me? TN, he explained is not an area he has much expertise on, when I was first diagnosed and I asked for information he gave me the Wikipedia page.
All he will do is prescribe the standard drugs which don't seem much use. I want a referral for anything, I will try anything, when I said this to him he said speak to the neurologist! I would love to speak to him!
Gosh, you poor soul - what a nightmare. I've been on Carbamazepine (Tegretol) from the outset and it got rid of my electric shocks straight away at only 200mg, but I had lots of background pain reactions, all centring around my teeth and "sensitivity". My TN is all about temperature. I go out, it nags, I come in, it nags, but thank God, the shocks have stopped. I get the odd near miss, but nothing like the electric prod to the root of the tooth I was getting before meds.
Are you sure carbamazepine won't settle down if you stick with it? I ask because I get horrific side effects ever time my dose goes up. Even 100mg. Currently we're putting it up once a fortnight, which is a major pain, but still WAY better than electric shocks. But the side effects last a week or more and they can be really bad. Nausea, motion sickness on walking, drowsiness like you wouldn't believe, reeling about like an old drunk and bumping off everything in sight, tripping, and stupidity of epic proportions. You'd be hard pushed to believe I'm a native English speaker to listen to me talk - I have to fish for the most basic of words and I need prompts all the time. But it does get better. I feel fairly normal by the end of a fortnight and then we put the dose up again - sigh......
Were you not able to get the side effects stabilised, because it is worth gritting your teeth till your body gets through them. Or was it because you were on such high doses?
P.S. Oh, and I forgot the burning pee! For the first 4 or 5 days it hurt like merry hell to pee - not kidding!
borris said:
From all the meds I have had since the start, only 2 have provided any sort of relief for any sort of time, pregablin and oxcarbazepine. These at any level have not completely stopped the pain, they have reduced the frequency and severity but nothing for the background pain and I still get 10+ flashes a day that stop me in my tracks.
I have done all the normal meds, started on amytriptline and titrated up with no benefit, then carbamazapine but they made me sick, itchy and affected my vision so stopped, gabapentin to max dose did nothing but give me awful mood swings and made me very depressed, then I had a bit of luck with pregablin that lasted about 3 1/2 months, then got a cold and that seemed to set it off again and now on oxy. Again initially it seemed to be working, started them mid April, currently on 1500mg and the pain intensity and frequency is increasing.
have seen a neurologist for initial consultation, start of may, he has not responded to email or phone calls for last few weeks, he did mention about having infiltration injections but since I haven't heard from him no idea what is happening regarding that now.
Have had mri and it didn't show anything so I have been told not a candidate for any operations. My gp is hopeless, when I last spoke to him he said what do I want him to do for me? TN, he explained is not an area he has much expertise on, when I was first diagnosed and I asked for information he gave me the Wikipedia page.
All he will do is prescribe the standard drugs which don't seem much use. I want a referral for anything, I will try anything, when I said this to him he said speak to the neurologist! I would love to speak to him!