Trigeminal Neuralgia help please!!!!!

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My friend has recently been diagnosed with Trigeminal Neuralgia. He started on Lyrica, but stopped due to side effects. Started taking Tegretol almost 3 weeks ago 200mg per day. Is now up to 1000mg per day. He found that the 1st couple of days he was heaps better and then the excruciating pain would begin again, up the dose, relief for a few days, pain, up the dose etc. At what point does he go up to, he is extremely irritable and upset (as am I), and needs some advice. Hasn't got a regular doctor, doesn't trust them for many many reasons. Please advise! Thanx

Tracy

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  • Posted

    Tracy,

    Very important to see a neurologist. I'm settled at 800 mg a day. Your neuro has to help find what works. I've heard drop dead max is 1200.

    eddie13

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  • Posted

    is he increasing the dosage on his own. i would increase and decrease without a doctor's advice and this increased my pain to x1000. worst experience of my life. i had to be hospitalised for that pain. he really should visit a neurologist or a maxillo facial and oral surgeon. also cod liver oil capsules and b complex helped
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    • Posted

      Hi there, thankyou so much for responding! I have never been on a forum before so don't know how these things work. Wow! OK! The doctor he saw started him on 200mg day and night and told him to do that for three days and then have 400mg day and night!!! Ok, have told him what all these good people have said and he will slowly start lowering his dosage to around the 600mg mark. He is reluctantly going to see a doctor in the next few days to see if he can get in to see a neurologist! Did you slowly come down off your high dosage? I have so many questions!!! Thanx again!
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  • Posted

    Wow! Okay, firstly your friend needs to find a doctor that he CAN trust. Tegretol, at that high dosage, needs careful monitoring over time. Who's prescribing the drugs, if he doesn't have a GP? Tell us more! Colin
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  • Posted

    Yes, all the advice above is good.  Also in my opinion there should not be so much fear around surgery.  Some of the out-patient surgeries have risks but so do meds.  Balloon Compression and Radiofrequency thermal lesioning are the best from my research.  Good luck to your friend!
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  • Posted

    as stated below by eddy 13, I, too have heard that anything over 1200 is a lethal dose of Tegretol. Your friend needs to insist on seeing a Neurologist as they will often prescribe drugs in combination which works better than one medication alone eg I am on Lyrica 350mg and Tegretol 1000mg. If this has to go any higher I will get side effects from the Lyrica and I will consider an operation. A GP should not be prescribing Lyrica or Tegretol in an ongoing way without a Neurologist being consulted as these are dangerous drugs. Never increase or decrease Tegretol by more than 25mg per week and never without a doctors assistance. Your friend will also need liver function tests every 6 months as these drugs can affect other organs of the body (hence the need for a neurologist) I understand the whole "not trusting doctors" thing and therefore you and your friend must consult one GP regularly and one Neurologist regularly but keep your hands on the reins and research, research, research. Never just blindly follow instructions without asking lots of questions and having knowledge of your own gained from much reading and come back and let us know how things go.
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  • Posted

    Following on from recent postings, the minimum dosage of Tegretol is normally 100mg and the maximum is 1,200mg for TN, although higher doses are used to treat epilepsy. It's not lethal at this dose!!

    Regular monitoring of our general physiology is important, especially liver functions, but your friend's GP can interpret the blood results, it doesn't need a neurologist - if there are unusual issues then your GP would refer him to a specialist in liver medicine (hepatology), not a neurologist. 

    But most importantly (in the UK, anyway), your friend needs to get over his phobia about GPs. He will need a GP to refer him, if he needs to see any specialist, so best to get this problem sorted first! Colin

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  • Posted

    Hi there, thankyou all so much for answering! Don't feel so alone with this anymore! I am not used to forums, do i have to answer each person individually or does my post come up in my own reply to myself?!?!? I have so many questions. But first let me say I do understand my friend's reluctance to see a doctor, although I do agree with you all that if he was seeing one regular doctor that he trusted, then he could be monitored better and more consistently! However, he has had some bad experiences with doctors who have stuffed his life almost completely in the past - was put on statins (cholesterol lowering drugs) and was one of the huge minority where he was severly disabled because of it, and still now, 9 years off the drug he is not the physical man he was! LONG STORY! So, when he has to he goes to the local clinic and waits to see whichever doctor he can. He is going to do that this weekend and book in to see a neurologist!

    Other questions if I may ; What do you do when the pain is absolutely excruciating? He's woken up many a night feeling like someone or something is peeling his face off, very roughly!!!

    Why is laying down make it feel so much worse?

    Are there any common denominators for those with TN? Smokers? Drinkers? Nail Biters? etc

    Thanx for reading and caring!!! Really appreciate it!

    Tracy

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    • Posted

      No, there's no need to reply to each of us. We can all read what you're saying.

      Where are you living? It's helpful to know which country, as the health service varies enormously from place to place - sorry, of course you know that! I'm in the UK.

      Good luck and keep feeding back your thoughts, as things progress.

      Colin

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    • Posted

      Well, if i was in as much pain as that I would be going to the Emergency Department of a hospital with all my medications (and please take your prescriptions along too so they know you got them legally) Hopefully the words "Trigeminal Neuralgia" will galvanise them into action (I live in Australia and it really makes people move quicker to help you here) Tell your friend to be brave and go. Maybe you can go with him as a support person (we really need it sometimes) Thank you for being a good friend to him.

       

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  • Posted

    Hi again! I am in Adelaide, South Australia. My friend knows I would go with him if he wanted to go. I am basically his only support at the moment. He won't even look at sites like this yet. He suffers with anxiety issues and this whole thing has scared him so much, don't blame him. He has had a couple of little looks on the internet about all this, but has stopped again. I try to reassure him that it is only the extreme people who come on these sites and not those who have a very mild case etc. Um there are some people who only get it mildly and for a short time aren't there? When he went for his MRI the nurse had it ten years ago for about a month and has been fine ever since!

    Are there any people from Adelaide on this site that could recommend a good doctor and neurologist?

    thanx again

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    • Posted

      you might also like to look at Trigeminal Neuralgia Australia/New Zealand which is a forum on Facebook. The people there have info relating to Australia in particular. I am on both groups as you can get a lot of good info on both forums.
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    • Posted

      Hi there, we are in Semaphore /Port Adelaide. Whereabouts are you? Yeah I have been in contact with the Australian TN site and have emailed the president Irene about a couple of things and have spoken to Graham, the S.A. representative a few times on the phone.
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    • Posted

      I am in Woodcroft. I will be in the Port in a few weeks to go to the RSL and hand over some medals from my family from WW1 and WW2 which we are giving to them. Maybe we can meet for coffee then if you or your friend would like to. BTW I grew up in the Port and lived on Semaphore Road and also on Coppin Street Semaphore.
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    • Posted

      I dont think the Tn site you are on in Facebook is the same one I am on. I think you may be on Trigeminal Neuralgia Association Australia which I think has monthly meetings at somewhere just north of Adelaide. I know nothing about them at all. If you are on Trigeminal Neuralgia- Australia/New Zealand, you will see my profile pic as above left if you want to see what we are all talking about. The more information you can get the better so don't be afraid to be on several forums.
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    • Posted

      That sounds good. I have been a member of that RSL on and off over the years! Will have a chat to Brad and I think he would really appreciate having someone to talk to. Um I'm in bold because for some reason it wouldn't let me type in here normally? Is that a common issue?

      By the way, what is your story with TN? And is there a way of finding people's stories on this site anywhere?

       

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    • Posted

      Not a big facebook fan. Check on the neice's and nephews every now and then, but never actually comment or post anything. So yes the TNAA is who i have been in contact with. We are hopefully going to their next meeting in about a months time.
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