type 2 and trigeminal neuralgia

[lucylocket61]

I have just been diagnosed with this. I feel devastated at yet another thing to suffer/deal with. Anyone else got this and got any ideas please?

I am started on 100mg carbamazepine twice a day since yesterday.

 

[Scott-C]

Anyone else got this and got any ideas please?

I'm pretty sure @Mel dCP has mentioned having TN, any tips for Lucy, Mel?

 

[LooperCat]

I have TN, it’s the worst pain I’ve ever experienced, along with gallstones. I started on carbamazepine too, and it really helped, it’s very good for TN. I have quite an unusual case, in that it’s the part of the trigeminal nerve that was in the salivary gland that is misfiring - so anything that triggers salivation triggers the pain. Carbamazepine was good for a while, but I had a couple of strange episodes where I collapsed - I didn’t lose consciousness, it was like my skeleton just evaporated, and I just melted to the floor. This was put down to the carbamazepine, and I was taken off it and put on a high dose of pregabalin instead.

I was due to have some quite major nerve blocking done a few months ago, but since I got my HbA1c down to normal levels, the pain has all but gone. My team think it’s a form of diabetic neuropathy that seems to be reversing with good blood sugar levels.

TN seems to have a few forms, I don’t know if my experience will be of much help, I’m afraid. It was destroying my life, but I barely notice it now.

 

[DCUKMod]

Hi @lucylocket61 - That really is a tough blow.

As I'm sure you'll know, the trigeminal nerve is biggie and being across our face it can be irritated by merely changing our facial expressions. Where are you feeling most pf your pain?

What had your Doc said, aside from take the tablets and see how it goes?

 

[hankjam]

Sorry to read this news @lucylocket61 hope the treatment helps.

Why do they have to stick to such awful / unhelpful names...

 

[ally1]

I,ve had it twice and was the worst pain ever. All I got told, was to take paracetamol.

 

[Glennis67]

I have just been diagnosed with this. I feel devastated at yet another thing to suffer/deal with. Anyone else got this and got any ideas please?

I am started on 100mg carbamazepine twice a day since yesterday.

Nightmare. I had trigeminal neuralgia for three years so am sympathising. I had two teeth removed and was passed from dentist to doctor and back again. Never found the reason, but if my SCM muscle in my neck is tight my teeth still twitch!! (But at least the pain has miraculously gone.

 

[lucylocket61]

the thing is, I am not in much pain!! I have a constant ache top and bottom of my right jaw, and around my ear. I have fleeting sharp shooting pain form time to time. And thats it so far.

I admit to being seriously terrified about what may happen and about the pain I am facing in the future. I have been told it is progressive.

what do I do/take to relive the pain if it gets bad?

 

[PenguinMum]

Gosh Lucy thats not at all nice. I cant be of any practical help but I do wish you all the very best. Take care.

 

[lucylocket61]

I have TN, it’s the worst pain I’ve ever experienced, along with gallstones. I started on carbamazepine too, and it really helped, it’s very good for TN. I have quite an unusual case, in that it’s the part of the trigeminal nerve that was in the salivary gland that is misfiring - so anything that triggers salivation triggers the pain. Carbamazepine was good for a while, but I had a couple of strange episodes where I collapsed - I didn’t lose consciousness, it was like my skeleton just evaporated, and I just melted to the floor. This was put down to the carbamazepine, and I was taken off it and put on a high dose of pregabalin instead.

I was due to have some quite major nerve blocking done a few months ago, but since I got my HbA1c down to normal levels, the pain has all but gone. My team think it’s a form of diabetic neuropathy that seems to be reversing with good blood sugar levels.

TN seems to have a few forms, I don’t know if my experience will be of much help, I’m afraid. It was destroying my life, but I barely notice it now.

thank you for sharing this. I hope yours does not return. How did you cope with the intense pain and did you also have a continual nagging ache between the pain striking?

 

[LooperCat]

thank you for sharing this. I hope yours does not return. How did you cope with the intense pain and did you also have a continual nagging ache between the pain striking?

I didn’t have any pain between strikes (and I use that word because it was like lightning in my jaw). And to be honest, I didn’t cope at all well. Not very helpful, but I’d rather be honest x

 

[rochari]

Really sorry to read you've been diagnosed with TN. I had it many years ago and it was the pain from hell. The tablets I was given were tegretol and they did help but I always felt I was permanently in a daze. I have a friend who is a dentist and he called one night for a catch-up and I could hardly speak because of the pain. He came over, numbed my face up and I remember how good it was to get sleep that night. After a good few months the pain stopped as quickly as it started, thank god. Bill

 

[LooperCat]

Tegretol is the brand name for carbamazepine, it’s the one I was on.

 

[DCUKMod]

Really sorry to read you've been diagnosed with TN. I had it many years ago and it was the pain from hell. The tablets I was given were tegretol and they did help but I always felt I was permanently in a daze. I have a friend who is a dentist and he called one night for a catch-up and I could hardly speak because of the pain. He came over, numbed my face up and I remember how good it was to get sleep that night. After a good few months the pain stopped as quickly as it started, thank god. Bill

That's interesting. I'm assuming you had the numb face, half tongue and lip one would expect with a trigeminal block? Did the injection your friend did halt the pain in it's tracks for good, or just for a couple of hours.

 

[rochari]

Tegretol is the brand name for carbamazepine, it’s the one I was on.

Thank you Mel, I didn't know it was the same drug. This all happened with me around 25 years ago and I have kept, since then, a small strip of them just in case it ever came back and I could take them to my GP and get another prescription. Looks like they still use the same drug. Bill

 

[rochari]

That's interesting. I'm assuming you had the numb face, half tongue and lip one would expect with a trigeminal block? Did the injection your friend did halt the pain in it's tracks for good, or just for a couple of hours.

DCUKMod, yes I had all you mention. Prior to the actual diagnosis (a new GP at the surgery) my 'old GP' told me to go see my 1) optician and 2) my dentist. Did both and nothing was found, although the latter re-filled two upper-right teeth. He said they looked OK but as the pain in the area was intense he didn't think it would do any harm and may fix the problem. It didn't. Eventually, after a horrible night I had to get an emergency appointment with the surgery, saw the new GP, and it was he who said it could be TN after he got me to trace with my finger where the pain was on my face. I had never heard of the condition.

My friend injected into what felt like the highest part of my gum, top right and close to the back of the mouth, just like what you get when having an extraction. After a few minutes I began to notice the pain lessen. I was free from it for about 6 hours only but just that short spell of relief was great. Also, it didn't feel just as sore when I woke but an hour or so later it was back, full-force. Bill

 

[LooperCat]

They gave me a trial nerve block that lasted six hours, so I could see if that level of numbness was acceptable for a long term (several months) procedure. When it had worn off, I found that I’d chewed the inside of my cheek to mince! However, I made the decision to go ahead, because the TN pain was that bad I’d have done anything to get relief from it. But as the day drew nearer, the TN became less and less (I’d got my HbA1c down from 89 to 50 by this point) and we (my consultant and me) decided that the side effects of cheek numbness, possible loss of taste sensation, chance of damaging my facial nerves etc were too high a price for the much reduced amount of pain it would relieve - “do no harm” basically. I’m still on the books, and have the option of the long term nerve block if the pain gets worse, but for now it’s in remission. I get the occasional twinge, maybe a 5/10 on the pain scale: it was a solid 11/10 at its height (about the same as gallstones). I can live with that.

 

[DCUKMod]

DCUKMod, yes I had all you mention. Prior to the actual diagnosis (a new GP at the surgery) my 'old GP' told me to go see my 1) optician and 2) my dentist. Did both and nothing was found, although the latter re-filled two upper-right teeth. He said they looked OK but as the pain in the area was intense he didn't think it would do any harm and may fix the problem. It didn't. Eventually, after a horrible night I had to get an emergency appointment with the surgery, saw the new GP, and it was he who said it could be TN after he got me to trace with my finger where the pain was on my face. I had never heard of the condition.

My friend injected into what felt like the highest part of my gum, top right and close to the back of the mouth, just like what you get when having an extraction. After a few minutes I began to notice the pain lessen. I was free from it for about 6 hours only but just that short spell of relief was great. Also, it didn't feel just as sore when I woke but an hour or so later it was back, full-force. Bill

Thanks - I would have been astonished if the injection your dentist gave you had permanently resolved the issue, but it is correct it would do so temporarily.

TN can be really troublesome, and just refuse to push off - a bit like tennis elbow really.

 

[lucylocket61]

I have to admit, the thought of being in such pain in my future terrifies me.........

 

[LooperCat]

I have to admit, the thought of being in such pain in my future terrifies me.........

It may not progress. And there is very good treatment if it does - you’ve been diagnosed early, which is a good thing. Many people endure years of pain and needless dental surgery before they get to the root (pun not intended) of the problem. I only suggested it to my dentist after a Facebook friend suggested that may be what my pain was - had I not compared it to gallstones in intensity, he wouldn’t have realised it was that bad.