Constant pain
Posted , 9 users are following.
Hi guys,
just been diagnosed with TN, just wondering if its a mis diagnosis as my pain is constant and can last from anything from 45 mins to about 5 hours and I'm rolling round the floor with the pain. I'm on 600mg of carbamazepine, 20 mg of amitryptiline, and Oxynorm as and when required. But last night I had a crushing headache all over my head that lasted for a good hour after I'd taken all my meds. I'm seriuosly going mad with the pain. Any ideas ??. Many thanks in advance ...Daz
1 like, 16 replies
dawn_49415 Daz71
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vicky59618 Daz71
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Baudwalker Daz71
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The symptoms of TN are as many as varied as the strains of the ailment.
I am on 600mg of ox carmazapine 4 times a day, 100mg of Lyrica three times a day and Zopiclone 7.5mg at night if needed.
I still have pain all of the time, albeit reduced by the medication but not totally.
Hang in there and RESEARCH the issue yourself. Get your GP to tell you what he knows about the issue and if he doesn't have a good knowledge of it ask if he knows anyone that does.
Most GP's don't see TN too often so are not terribly skilled in it.
Good Luck
Baudy
susan33651 Daz71
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I thought that I had a variation of migraine when I first started getting pain in my eye, but recently when it got worse (nothing in the way of normal painkillers or MST would stop it) and other parts of my face, mainly the left side, started to have similar pains I went to the GP and after giving him a full description of the pain and other symptoms (spikey-footed spider crawling across my cheek etc) he said it was TN. I had my Amitriptyline dose increased (50mg at night,10mg twice throughout the day) which I take for autoimmune induced neuropathic pain and was started on Carbamazepine, slowly increasing the dose because of other meds I'm on for autoimmune disease (100mg three times a day). I am at the point now where I get fewer episodes of short-lived stabs in my scalp and other parts of my face on a daily basis, BUT if I get a flare-up starting in my left eye I am done for! The most recent episode lasted for 14 hours!! It was on and off stabs and throbs and it also triggered pain in the entire left side of my head and face. Nothing worked to stop the pain, not even following the Carbamazipine or Amitriptyline. Needless to say I am visiting the doc shortly to try and sort out something to combat this.
On the plus side I have been following the advice of a forum member (apologies I can't recall who!) who said that they set an alarm to ensure that they take their meds at specific times. I have to say this approach has made a difference, a marginal one but still. I am only on a very low dose of Carbamazipine so have plenty of scope to increase it. Several people seem to spread out their doses which makes sense as it works better when the serum levels are stable rather than in peaks and troughs. Others take the slow release version which also gives better consistent serum levels. You could ask your GP to increase the Amitriptyline and/or spread out the doses. One thing to bear in mind is that Amitriptyline can be affected by Carbamazipine - its efficacy is sometimes reduced. Generally speaking opiate based drugs have little effect in combatting neuropathic pain. I would visit your GP and discuss how best to manage your drug regime and which meds would benefit you the most.
Best wishes.
Daz71
Posted
obviuosly we're all in the same boat. has anybody ever been in remission , where its totally gone for a period of time ??
vicky59618 Daz71
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maggie80535 Daz71
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Grannyst Daz71
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Yes. I go months without it and then it rears it's ugly face.
rob07566 Daz71
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Daz71
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Quick update, been told to stop the caremazepine straight away due to results of a blood test saying affecting my liver, so theyre trying me on Gapentin. Now I was under the impression that I couldnt just stop taking carbamazepine immediately, it has to be stopped gradually.....and I hope that it wasnt the carbamazepine that was keping the pain at bay or I'll be back to square one again...
rob07566 Daz71
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grant91899 Daz71
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Daz71 grant91899
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Baudwalker grant91899
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I'm and Aussie also but living in Cornwall UK.
I had extreme shopoting pains and to handle those I am now on oxcarbazepine which has less side effects (at least on me) than the ordinary carbamazipine. I am taking 600mg 4 times a day.
As well I had enormous headaches over the left eye and forehead and for that I am on 100mg of Lyrica three times a day. Once you used to LIFTING your foot to walk the stumbling seems to diminish (grin). Rotten stuff I agree but it works.
The TN pain is usually treat with an antiepilepsiy drug like oxcarbazepine ro similar and Lyrica us used for the headaches in my case
Good Luck
Baudy
grant91899 Daz71
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grant91899 Baudwalker
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