Research what?
Posted , 3 users are following.
ok so i've this TN for 2 and a half years. first i was on gabapentin and tegretol which worked for a good year, now im on gabapentin 1500mg still tegretol 300mg and now lamotrigine 100mg and since being on lamotrigine thats been a year which has been brill but the pain has just started to come back so im not happy with having to up the tabs as the are now obviously not working.
But, after reading loads of comments on here, all i see is people telling others to research, research and research. Research what? i've done loads of reading all over the net and i don't know what im meant to be researching!! lol. I'm looking for procedures but all i can see is people trying things that just don't work! So, what is the best procedure that is most successful? and what am i meant to be researching? im due to try Botox in a few months, has anyone had that? at least if it doesn't work for pain i won't have any wrinkles! and can stress be a trigger? i've had loads of that since september and im fortunate to have this on both sides.
can anyone help?
0 likes, 9 replies
fed-up
Posted
Baudwalker fed-up
Posted
Sorry hear your situation is changing after being stable for some time. Seems to be the nature of the beast from what I read. I am one who preaches RESEARCH only in an effort to have people look at ALL of the options.
If you look up KAUFMANN TN Specialist in Canada I believe, there are web pages there full of detail and allows YOU to compare them all. It covers from diagnosis to treatment. There are many others as well however the main thing is to find the situation that best mirrors YOUR circumstances and then dig deeper.
I took ALL of my research to my GP and ONLY used medications he prescribed. Self diagnosis is not a very well recommended procedure!!!!!
There are so many different causes of these TN issues unfortunately there is no way of knowing what works for one sufferer will work for you. Most things, medication and intervention treatment have side effects and you need a trusted medico beside you who can guide you through the problems. It took me over 12 months to find my best solution but many of the comments I see others have massive side effects with what I was taking.
In my case the cause was a tumor on the parotid gland on the left side of my face. When they was taken out I am back on paracetemol and the occassional swig of oral morphine to control it. The signs are still there but very reduced pain wise and I hope this change once they start radio treatment as there is some of the tumor tracking along the nerve itself. They hope to target that and bring more relief.
So in my case most of the other treatments would have been of no use to me if ever anyone wished to use them on me. Keep RESEARCHING and be sure to take your GP and any Specialists along with you.
I wish you luck on your search for a solution that will suit YOU!
Baudy
fed-up Baudwalker
Posted
hi, thanks for your reply. i never knew what i was meant to be researching! its a nightmare. im in the UK but i will take a look at the website you suggested. none of my doctors know about TN and the neuro i saw at my local hospital clearly has no idea either, i saw him the second time and said 'oh, i wasn't meant to be seeing you again)!!! he just suggested pills and bascially thats it mate, get on with it!! so, im being sent to Adenbrokes hospital they are head specialists and top neuros second to London, thats for the botox and i'll see what else they suggest. i was supposed to come off the tegretol but i am too scared to come off it as with the lamotrigine you can only go up to 400mg a day so thats not alot thats also another reason i stayed on the teg, just that litle extra backup. so after lamotrigine i need to know what drug is next as i need to be prepared but my doc just says we will sort that out when we get to that stage but as you know thats not good enough, i need another plan in place with no hanging around. what about a neurectomy, is that any good, cus its sound good to me!!
i don't know how come they haven't found a cure for it yet!
Baudwalker fed-up
Posted
Hi Again
Ok..first thing I did was question my GP about what he knew. That was just a little more than nothing so I went to as many forums and websites as I could and looked for symptoms similar to mine. I then checked what they were using and it started there. Basically the drugs they use are all in the same groupings and the actual brand and dosage usually depends on the side effects.
Remember the side effects have to take into account any other issues you may have as well. In my case just changing brands had a marked difference. Don't know why but I can only put it down to the extra fillers etc they use to bulk the pills out must have some effect.
I am also in the UK but way down in the south west so no fancy nancy places down here. I have learnt to just be up front and not bother if I offend anyone with questions about my health and treatment. One procedure I had I asked the surgeon straight out how many times he had performed that actual procedure. When he said over 60 times I was happy I was not a test bed experiment.
I doubt there will ever be a 'CURE' because the potential causes that can trigger this are so wide and varied to find a 'one fits all' solution is just a dream really. We all know that it is nerve related but just what is causing the nerves to react is almost impossible to identify specifically.
Not having and first hand experience with most of the available procedures I would never venture to offer any advice as I am not medically trained and have no idea of your ciurcumstances. Most people say MVD is the best way to go. My issue was half way up my face bedie the eye so boring a hole at the base of my skull would have been a waste of time and effort.
Stick with the medical profession, be forceful with all of them (not abusive or angry) and demand full explanations of their reasoning. In many cases my GP said I don't know the real answer but this is the best way to go to try and find the answer. So I went with his advice. Took some time to find the happy level but we did.
Good luck with your journey
Baudy
fed-up Baudwalker
Posted
hi. i have read all the stuff on that website which is very well informed. basically from what i can make out there really is nothing as its all designed to damage the nerve and more than likely to end up with that anesthesia dolorosa. i've always been optimistic!
mine started about 4 years ago, just felt a tiny tingling once a year and thought it was the tooth that was more filling than tooth so i had that pulled out, or rather ripped out, infact i swore. at the same time on the other side i had had a tooth pulled out but he left a tiny bit of the root left in, i got dry socket and infection and had just a sharp bit of pain which was nothing really, so that had to be sorted at the same time. the next drug i thought for me would be Dilantin. i have had oxcarb before but i ballooned, didn't know what i was doing and was taking them like smarties/painkillers, i suppose i could try it again and see what happens. i i will let my doc know of that website too, thanks for your help!!
army183 fed-up
Posted
Hey there Fed-Up
I've been in same situation. Got referred to the top msn Robert Macfarlane at Addenbrookes. He leads a good team of neurosurgeons and they do plenty of surgical interventions of several types, if necessary.
To keep this short I had:
Diagnosis of TN1 clinically about 3 yr ago by ENT specialist; referred to the neurosurgeon at Addenbrookes (RM), after consultation went for MRI, result showed a classical ( well, he said "beautiful"
compression of the Trigeminal Nerve by the local artery; went through all the options available to me with the plus and minus points clearly explained; seems I am a hot case for MVD; just deciding if/when to do it as drugs are becoming increasingly ineffective.
So the Addenbrookes team did all the "research" for me, Get referred to Mr Macfarlane, don't jump on any Botox or gamma knife wagons until you get all the facts. You may not have a perfect compression of the nerve, but you really need to find out.
Let us know your progress
Cheers
Big D
fed-up army183
Posted
hi army, thanks for your reply. im meant to be seeing Dr Anderson. i was originially booked to have the botox for the headaches but because i was put on lomotrigine and i had another perfect pain free year (as i did with tegretol) i didn't go! i've tried researching everything till im blue in the face and i still can't fathom anything out as just about everything says you can end up with that anaesthesai dolorosa rubbish. i just replied to someone else saying im looking into a more 'herbal' approach for time being but even thats confusing me.
the best thing about this is im lucky enough to have it on both sides, im sure most of the doc and local neuros don't even bother looking properly at MRI's!! plus i have to have a root pulled out next month and im worried to death about that.
can i ask how you manage yours at the moment and what you had decided on?
army183 fed-up
Posted
Hi FedUp
I'm on Carbamazepine solely. My maintenance is about 400mg per day but have breakthroughs fairly frequently and I go up to 1400 or 1600 mg a day. Luckily I am a big bloke and can also tolerate that sort of dose with some side effects but not too serious. I'm pretty well used to this stuff now and am good at titrating the dose back down again when my breakthrough settles down, usually after about a week. Can't stop taking it suddenly of course otherwise risk of seizure. No good at all with Amitriptyline as it knocks me out even at low dose.
My TN is type 1 and more or less focused in maxilla over left lip but pretty grim most of the time.
The risks of MVD are well described but the down-side seems much less than the constant grief of this pain which won't ever go away and is likely to get worse over time. The neurosurgeon team at Addenbrookes seem pretty good with a lot of experience of MVD and other procedures. I'm going to go for the former within the next year or so, but if the condition gets too bad then I'll try to bring it forward.
You do need to get referred to them (esp Robert Macfarlane), who should go through all the options with you in detail. Will be a great help for you to decide what to do for best.
You live near Cambs? I'm in Suffolk.
Cheers
Big D
fed-up army183
Posted
hi, yes im in Cambs so its about 40 mins away. i did have an appointment a couple of months back but didn't go as the tablets were working a treat. im on gaba 1800mg, teg 600mg and lamo which i started early this year 75mg which last week i had just gone up one. teg worked for a year, i had a brilliant year and this year on lamo has been the same, i was suppoesed to come off the teg many months ago but i just can't, a 'safety blanket' i suppose but doc doesn't mind as im such a low dose of them, but then he hasn't got a clue about this or the drugs!! i did try oxarb but that wasn't explained to my either and i just took them like smarties and painkillers every 4 hours and i ballooned in weight.
i've heard they are the best at Addenbrokes and in a wierd way looking forward to it, i have classic tn on the right side an atn on the other so they will have a brilliant time with me!! i haven't got a clue which branches are affected cus none of that has been explained, from what i have managed to feel when the pain breaks through on the right side it goes along my top teeth and can give off sparks around the ear? and have felt a thumping on the bottom teeth but touch wood its stays that way as i say thats what i can feel when it breaks through. i really hope they do the research for me too because i have not got a bleedin' clue, i've read everything there is and i am non the wiser, all i know is with every flaming treatment theres a huge downside like anasthesia dolorosa or not working at all and giving more pain!! neuro's i saw at my local hospital have not got a clue, the first one watched me cry for 40 minutes before saying 'you'll have to learn to live with it' and the other only wanted to see me once and say take this, take that and get on with it, when i turned up the 2nd time i thought it was a follow up for him to see how i was getting on, he said 'oh, i though i was only seeing you the once' and take these!! pain clinic said my pain is down to anxiety and said theres nothing they can do apart from end me to a shrink! they did originally say i could have accpuncture but they hanged their mind, they just can't be bothered.
now, i have to have a bottom root taken out and im dreading it as i know this is going to spark everything off worse, as stupid as it sounds but only people who have this will, im writing notes everywhere for family to have as all i can think about is ending it all, i honestly don't know what to do.
sorry to write an essay and all that!