i am 34 and am in some real pain just now,have been for about a month this time. I think i have had TN since i was a teenager as i can remember getting these pains then too,just not so intense. I have started on tegretol a week ago 100mg twice a day,just doubled the dose to 200mg once a day and 100mg once a day for a week and then it will be 200mg twice a day and see where we go from there.
I am finding the pain unbearable,i end up curled up in a ball on the floor,sometimes in tears. Now understand that i have been through some serious pain in my time and had some pretty bad accidents, i've got the scars to prove it. But nothing,nothing compares to the pain i am in with this. Is there anything at all i can take that will even just take the edge off the pain so i might be able to function a bit better. I am a stay at home Dad and have a 1 1/2 year old to keep an eye on and its hard to do that when i am in a ball on the floor.
If anyone out there can give me a few tips or pointers on how to deal with this bloody affliction i would greatly appreciate them
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Bamba
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Hi I have trigeminal neuralgia and take gabapentin I find it's great but I do still get breakthrough pain sometimes, the worst bit is the wooden stake through the head feeling but it doesn't last long thank goodness, Ask your Dr about putting you on Gabapentin and see if it helps. I hope it does must be awful for you with having to look after your little one. Have you seen the ENT specialist too to see if there's an ENT cause for the pain? Hope you get it sorted soon
I think because the Docs are only just believing that it may be TN they want to try me on this Tegratol for a while first. I have another appointment on the 19th.
As for an ENT specialist, whats this? and i dontlive in the best place for support for this kind of thing. The hospital where i live is a bit of a running Joke. Its a patch up and send somewhere else hospital. But hopefully i will be moving back to the big smoke again soon so should be able to find more support networks there.
Yes i am supposed to be seeing one soon as i have had sinus problems for years too. it leaks a yellowish liquid mixed with blood. Sorry thats so discriptive and disgusting but if i be blunt about it other might have had the same thing and be able to offer up some other kind of advice.
Hi, I'm 41 and last August diagnosed with TN. I started with 100mg Tegretol twice a day, but because it didn't seem to do much I dosed up to 200mg 3x a day, evenly spaced so at getting up 6:30, lunch 1:30 and late evening 8:30. I took a higher dose too quickly with all nasty side effects. It took about 3 weeks to get effective and reduce the pain, 6 weeks to almost block the pain. At present I'm pain free on 600mg a day. I find Tegretol very effective. But I know people who need a combination of drugs to get any relief. Take care, I know the pain is immense, and incomprehandable for outsiders. For moral support tn.gov.uk there are very nice people on the forum.
i cant seem to use the link you have added. But thanks for your advice upped my dose today 200mg twice a day. I cant take the pain,the not sleeping,i have hardly eaten for ages now and living on a sandwich every other day cant be good
hi....it's pretty hard to deal with anything when it seems like there's no answer for the pain...just what is trigaminal neuralga? I have PD w/ camptocormia which affects the back...don't know many out there with that either...hello...does anyone have this problem?
£15 yearly membership and the forum site becomes available. Very nice people on there who will give you all the support and help you need. It's worth the money. Lots of knowledge, also to advise you on further threatment. Hang on in there, stay on 200 mg twice a day until side effects subside, see how the pain is and discuss with your GP to go to a higher dose.
Thanks Moby, i will have a look in that website. I am now on the 200mg twice a day. I have not had any of the side affects yet but as its only been 24 hours or so i am sure that they are in the post. Strangest thing last night though, i got a few relatively pain free hours and managed to get some real sleep for the first time in ages. When i woke this morning the pain had returned but not as bad as the last few days. As i write this i can feel it there just waiting to bite me but compared to how it has been i can deal with this far more, but i know it wont be long before the pain returns. On a really good point though, my partner now has a few days off work so i will be able to relax a little and not be under so much stress with the kids. We have 4 all together, she has 3 from a previous relationship and then there is my wee man, he is 1 1/2 and it is soul destroying not being able to do anything with him this last month because of the pain i have been in. Having to keep him in the house most of the time just isnt fair on him. Hopefully the Tegratol will have a good effect for me like it has for you.
If the link doesn’t work just search for trigeminal neuralgia in your Google bar, must be between the first 6 hits. They have a phone number you can freely phone when it's all too much and you need some support the number is 01883-370214. Donno how you cope with 4 kids, have non myself but couldn't even take care of me?
What surprises me is that TN is a degenerative disease, so for old folks, then why does it seem to me more 'mid' livers and younger people seem to get it. I'm participant in a global mobile phone study that will stretch for decades to come, curious to see if this could be linked
I no how people feel, I have awful attacks and nothing seems to work, I get awful headaches with an attack. not many people understand the pain. I go to the hospital and I am sure the nurses do not understand the pain you are in, as you can not see the pain and one looks OK. people say to me you look good.
The other half has been off work for the last 2 days and has another 2 days off yet. I have to say that this has eased the pressure on me somewhat. I am now able to relax a little and am not having to chase my 1 1/2 year old son around the house. i am now on 400 mg of Tegratol per day. 200mg in the morning and 200mg at night. Still not noticing any bad side effects from upping my dose so quickly but then i have got a very good tolerance level for medicines as i led a pretty mis-spent youth up until 8 years ago.
The pain seems to be subsiding the past couple of days. I am reluctant to put this down to the medication as this bout of TN has now gone on for about a month and it could just be the fact that its run its course for this time, fingers crossed i am not speaking too soon. But then again it could be the tablets, i will keep taking them thats for sure as i dont ever want to feel the pain of those spikes again. I can still feel the pain lingering but as far as the spikes go i havent had anything worse than a pain scale of 6 for the last 2 days. Considering the past month the pain has been 10+ and i have wanted to put my head through a wall or even cut it off to stop the pain its like a walk in the park having pains at 6.
Just went for a wash and nearly set it off again. i felt the electric shock shoot through my cheek but thankfully didnt get more than that.
Something i did want to ask though, I seem to remember that at the start of this bout of TN directly under my right eye on top of the cheek bone the nerve/muscle felt like it was having some sort of spasm, it kept twitching ,this went on for a few days before i started to get the real pains. Has anyone else had this,do you know if they are related?
I have the twitchy feeling under my left eye. My pain is on the left side. I'm on my 3rd day of taking 300 mg of gabapentim. Today I got up to the full dosage of 3. Times a day, everyone was very supportive. My pain feels like the jolt of an ear infection, with the pressure of impacted wisdom teeth and the feeling of an exposed nerve. When I have a surge of pain my blood pressure gets high, couldn't believe my dentist when he told me my teeth were fine. I went to 3 drs in 3 days and have an appointment next week with a neurologist. This has come on so quick and so painful, I'm trying to figure how and what to eat, how to hold my mouth. Not to touch my face
I had trigerminal for two years, and still get awful pains, I have had many scans all clear, thank god. you have to watch your sodium level when you take the drugs. I take Trileptal oxcarbazapina i NSTARTED AT 600 TWICE A DAY AND REDUCE TO 150 TWICE A DAY,But last week I had a flare up again, and was at the hospital 6 hours I had a headache for 5 days, I felt no better when I left, I had to up the doze to 300 three times a day, this makes me feel so awful I can not cope with it. I see my GP this week to make another urgent appointment with my neuo.surgean. Its an awful illness if you can call it that. I may ask for the operation if its contines to flare up like this time.
you should look this up on the internet it will tell you all about it, its an awful complaint and there is vbery little that can be done with out side effects.
it can not be seen on a scan. Its manly on the right side of the face. Like me I thought I had tooth ache and had my back teeth taken out, the dentish should of known this and sent me to the hospital before he took the teeth out.
just as i thought i would be able to put the pain of the last 6 weeks behind me it flares up again. My 1 1/2 year old son picked up a bug from someone,probably while out shopping with his mum. We have basically been taking turns in sitting up with him and all he wants is cuddles so of course i have caught that bug now too and progressively over the last two days the pressure in my head has returned as have the smaller spikes. I am just hoping that it doesnt get worse because i need a break from this. I think i will up my dose of Tegratol tomorrow to the 300mg twice daily that the doctor thinks i will need, fingers crossed it works.
Hi Bamba, if the doc is ok with you raising the dose again try to go to 200mg 3x a day, spread it with even intervals, when you get up, 7 hours after getting up and 7 hours after the second dose. But make sure this is at the same time every day. Set an alarm on your phone to warn you it's 'pill time'. It works for me and I notice that if I forget my pills my face will warn me a couple of hours after I should have taken them.
It's importand to keep the level of meds in your blood at a steady level, this is how the meds do their job the best. Ask for a bloodtest to see at which level the drugs are in your blood. Great you don't seem to have any side effects,...
Thanks for the advice. I had thought about taking them at 2oomg 3 times a day but wasnt sure about it. I am now on the 300mg twice daily and it seems to hold the pain at bay. I know its there and i know that if i was to forget to take my tablets i would probably end up in pain. I have been wearing a Beanie hat again for the first time in years and i think that seems to help too. The pain i have reminding me seems to be in the back of my skull now though rather than in my Temple or Face.
As for the side affects,as yet i havent seemed to notice any. I do have very high tolerance levels as i am a recovering addict thats been clean for about 9 years now so i think that has something to do with it. I have been told by some Doctors in the past that this would be the case but many Doctors dont like to admit it because it means higher doses and higher risks, or they see it as me going to them trying to get drugs. For this reason alone i stopped going to see Doctors for years. Still dont like going to see them now. I have even told them that because of my past i dont like to take meds for too long,especially if they are addictive. But when it comes to the pain of TN i made an allowance for Tegretol after much consideration and discussion with my GP. I am due to go back to see my GP on the 19th so i am sure that he will want to do some blood tests then too.
I am off to the dentist next week, my teeth hurt when I chew , I had small x-ray last week, dentist found nothing wrong so next week a full face dental scan.
I am still on 300g twice a day and the shooting pains have stopped a lot, but I feel like my jaw is not right, lst time in two years since getting neuralgia trig.
when I touch my teeth they hurt. have you ever tried eating with out your teeth touching.
I was diagnosed with TN in 2000. The pain was so severe that I went on to 800mgs Tegretol immediately. It wiped me out for a few weeks till I got used to the effects, but it had the pain sorted within a week.
The problem with larger doses of Tegretol is the side effects. These can be quite severe and at high levels debilitating. You should however try and get the slow release tablets?? These reduce the impact of side effects whilst still delivering the required dose.
I have had 12 years of pain, but thankfully, I have had periods of remission between the acute episodes.
Sadly, I started again in October 2011 and have gradually increased drugs until just around Christmas this year I was taking 1000mgs Tegretol, 2400mgs Gabapentin and 30mgs Baclofen.
You need to ask for a referral to a Neurologist. The majority of GP's will not prescribe anti convulsant drugs (which is what Tegretol and Gabapentin are) to that level for a patient suffering with TN. You also need to have the diagnosis formalised.
Trigeminal Neuralgia is a chronic condition, but there are potential interventions. Some of which, whilst no guarantee have produced good effects.
I had a Microvascular Decompression in February of this year. I am still weaning myself down form the high levels of drugs, but am optimistic with progress.
Seriously....you need to be able to talk to someone who knows what you are feeling. It is also useful for our loved ones to be able to talk to someone.
I'm on the board of Trustees for the TNA UK charity. Feel free to drop me a line if you would like to chat more??
Take care.
livingwithtn.org/forum is a good place to try, Ive had TN for years now, so no the pain you are in. I had a MVD done 2 years ago in august and thankfully it has helped me tremendously ... I do still get the electric shocks but not as often as before.. I found this website really helpful, and all of the people who use it have the same or similar problems.... oxcarbamazapine is one of the best medication I have taken to help with the pain in conjunction with Amitriptyline, Your hospital should have a facial pain clinic, ask your doc to refer you....
I hope this helps, I know the pain you are in you do need some help......
Hi, I have just popped by to say hello, have been suffering with left sided TN for the past two months am on tegretol 200mg at night and 100mg during the day...and so far its beginning to take the edge off it. I am hypersensitive to meds of all types so am being cautious got a mouth full of ulcers and a rash which comes and goes but getting blood results today so will see how I get on. This is just adding to my other collection of ailments so I am thrilled. I have joined the two forums recommended and there is some excellent advice.
Ive suffered from trigeminal neuralgia for about 10years (im 24) luckily my medication that i take for my peripheral neuropathy sorts out the neuralgia too. its called gabapenthin. hope your pain eases soon x
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