I'm now off medication for TN. Still have minor pain.

Hi Richard

Has your Dr referred you to a Neurologist yet? 

I recognise your symptoms. I had the pain in the ear, to the cheek bone and along my teeth. I actually started off with stinging on the side of my tongue. It certainly sounds like you've got TN. Unless your Dr tells you otherwise I think you should accept it as confirmed. You could always ask your Dr to confirm it, if it puts your mind at rest.

Is it only Amitriptyline you're taking? If so what dosage are you on?

Has the increase in dosage eased your pain?

Gloriana

 

Hi Anna

Cloves are spices. If I'm not mistaken they can be used in a hot drink as well as cooking. I've never used them before. But I may give that a try too. Thanks for the information. 

Paracetomol is a pain relief tablet. Unfortunately for me not all that strong to remedy my pain. But it can often take the edge off it. I normally use them for headaches etc.

What dosage of Tegretol are you on?

When I was on them I reached 1200mg a day. But I think others have had higher dosages over the day, but I'm not sure.

If you're still experiencing pain go back and see your GP and discuss the level of the dosages you're taking. Sooner or later you will reach a happy medium.

Let us know how you get on.

Gloriana

Hi Gloriana

He started me off on 10mg but increased it to 25mg. I said to him what I feared it might be (TN) and he said yes probably is. He done no tests though and I did ask him about a scan but he said that would be difficult at this time as nerves cannot be picked on a scan ?

What I fear more is what's causing it. I've never had this before. I remember back in April last year I woke up with an toothache which felt like my teeth were been pulled out without the anasthetic. I then had bad sinus problem 's that followed so I put the aches down to that. But, they are still happening every night. It's not so bad in the day my ears just feel warm and clogged and back upper teeth ache.

What I'd like to ask sufferers what is the pain like they experience? Is it so bad it's unbearable ? Like mentioned I only really feel it when I lean on the face or laying down.

Thanks

Richard

HI, Yeah, I know clove is a spice but this woman said it comes in a liquid form..Again, I know nothing about it. I am on 300mg of Tegretol and 300 mg of Lyrica. I het real fatigued though. I think it is the tegretol..Wow, you were on a high dose. Maybe my neurologist will increase it! I don't like it though because I dont like being on meds but the pain is sooo bad. Thanks for the info!

Anna

Hi Richard, My pain feels like a burning awful pain in the gums under my teeth(I got 3 pulled) but pain remains. It's crazy. Then I have one area that feels numb, like I have novacain in it, and jaw ache and occasional small little shock under my nose. Yeah, it is kind of a debilitating pain and I can tolerate pain pretty well. Mine wa scaused by a tooth extraction I think , but I had a nerve injury so I may be prone to this. You were on 10 mg of what...?

Take Care Richard

Anna

Hi Richard

The Scan is to determine that there is no underlying problem. I had one and so did some others on here. Mine came back ok. 

You could ask your Dr to put you on something else like Tegretol, (Carbamazapine). It doesn't agree with some people because of side effects. But those that have been OK with it, like myself in the past, were OK. My Dr said it is the best one. But those that can't tolerate it have been put on other alternatives which are suitable for them.

As far as I know the Drs say they do not know what causes it. I was asked when I first got it if I was stressed, which I wasn't. I guess research is still going on. It could also be a loose nerve catching on another nerve. Something like that. But they don't know why it happens.

Your face and around your eyes are very sensitive and therefore anything can set it off. I've had just the odd occasion when I touched my face it was sore.  

I would suggest you go back to your GP and request to be referred to a Neurologist and a scan. My Dr automatically did it. Don't suffer in pain unnecessary.

Chat soon

Gloriana

 

Hi Anna and thanks for replying

10mg of Amitripyline increased to 25 today. To be honest it send me to sleep more than anything. I was putting it down to sinus trouble but when the doctor mentions "it could be " TN I'm still left confused. I also get like itchy tingling sensations in my head and face, again not knowing what it is is the worrying part of this. I've read up about the 2 very rare but big ones that can cause it and that's added to the anxiety a little. My nose is constantly blocked so I don't know whether that contributes to it. Very confused !

Take care

Hi Anna

The liquid form of cloves sounds better, it's worth a try I guess.

The Tegretol can make you feel tired and fatigued. I used to be in bed by about 9pm every night because I was drowsy from Tegretol. But once I got used to them I was ok until the evenings.

I had it really bad back then, so I was prescribed Amitriptyline at night too.

Did your Dr say why he's put you on two different medications?

Are you still in pain, even after the medication?

Chat soon

Gloriana

 

Thanks Gloriana I will do that. He said to come back see him if the pain don't go.

I've had it for 5 or 6 months now and it's really annoying ! As long as it isn't something serious that's causing it I'll live with it.

Take care

I think its Oil of Cloves you are hearing of

Ask for Oil of Cloves

Hi Valkyrie

Thank you I will. Have you tried this?

Hi,

I have had what I thought were Cluster Headaches for several years, because the pain I was getting was centred around my left eye and over that side of my head, however, in the last year the pain has extended to my nose and upper teeth/gum. My GP said it was most likely TN, especially as I get a numbness/weird sensationh over my left cheek/upper teeth and gum area. I have noticed that the attacks do sometimes coincide wtih mucky sinuses, but not always! Sometimes there is no apparent trigger.

The pain is excruciating, often wakes me up and is seemingly relentless. It usually lasts on and off for 3 - 5 days, and I get a background throb between the bursts or flashes of pain. It floors me, normal painkillers don't touch it and I had to confess to my GP that I'd been self-medicating with my husband's MST (morphine, for his back pain) in absolute desperation!! Even that did little to combat the pain. I think that was the clincher as far as diagnosis goes, TN rarely responds to standard or over the counter painkillers. I've been on Amitriptyline for a while for another problem (inflammatory arthritis/possible Lupus) and my GP increased the dose from 30 to 50mg which does seem to have helped with the existing problem and to a lesser extent the TN pain. I've only had a few flashes of pain in the last few weeks.

Should this increased dose prove to be only minimally effective I shall ask the GP for a Neurologist referral and something else to deal with it!

Read whatever you can about the condition and persist with seeking help from your doctor, if the medication doesn't work ask for something else. I gather the possible causes you mention were MS or tumours? These are rare and would have produced other more common symptoms long before the TN, rest assured your GP would have referred you to an appropriate specialist if he'd thought either of these were a possibility.

Best wishes.

Thank you so much for that Susan. I'm so sorry you experience terrific pain, and you are spot on MS and Tumour was on my mind and I did mention this to my GP and he said I'd need other symptoms. My pain isn't really unbareable although when I am lying on the pillow I have to keep swapping side's as there is uncomfortable pain there. If I lye on my left side the front of my ear, along my cheek and the left side of my gums hurt. If I swap over to the right , the front of my teeth and again the left side hurt. It's not a bad tooth like pain where I'd have to get to the dentist next day but a very uncomfortable dull ache. I remember when it started back 5 or 6 months ago, I described the pain as 'having my tooth out without the anasthetic '. I get tingling sensations around the cheek ear and head. Has the dentist missed something? Is it my constant bad sinus? It's just not knowing !

Take care x

no i have not tried it myself I have only heard it mentioned before in relation to releiving a bad toothache. My husband has used it several times for that problem. It did seem to be what anna was mentioning. The supermarket sells it where I live.

Hi,

You're welcome.

Being in limbo-land about an undiagnosed health problem is something I know about from personal experience and in my capacity as a qualified nurse! The not knowing is the worst part of an illness. In the event 'it' turns out to be something serious many patients go through a period of 'thank goodness, now I know what it is I can deal with it' - that in itself is a huge burden lifted from them, and goes a long way to aid recovery!

In my case the latest possibility for both the TN and the inflammatory arthritis I get is that it could be due to an atypical presentation of Shingles!! Needless to say I've been researching this and as with many immune system problems it does tick some of the boxes, but does not explain my blood results! So, hey ho once more!!

Keep your chin up (assuming that doesn't trigger the TN!!).

Best wishes.

Hi Susan,

I was amazed at what you wrote. I had shingles, and being a nurse, you would understand, when I say it turned out to be post herpetic neuralgia. I had shingles on my neck and because it was misdiagnosed I did not get the anti-virals. The shingles spread to my left ear and entire side of left scalp. I have suffered for 5 years and lost all the hair on my lefts side. The PHN is still real bad. Lo and behold 10 months ago I contracted Trigeminal neuralgia. It is soo painful also. Could you please let me know where you got the idea of TN coming from shingles. I would be super interested. Thanks so much.

Sincerely,

Anna

Hi, Anna

By all means, I have been having issues with joint pains (amongst many other symptoms) for several years following a bad fall (full flight of stairs as a result of an ear infection triggering positional vertigo). I badly damaged my neck and shoulder soft tissue structures (luckily no fractures!!). Since then I have had pain pretty much every day in various small joints and across my shoulders, lower back and thighs. I also get a rash on my inner thigh, which comes and goes and is usually present when I have a flare-up of the joint pains. Long story short.....I eventually changed GP surgeries as I was getting nowhere fast with this and some gynae problems. The new surgery was and is brilliant. Eventually saw ortho surgeon who fixed my severely inflamed and frozen shoulder, shorlty after that had gynae problems sorted out. It was after that surgery that the aches and pains got a lot worse. At about the same time I was looking into my brother's health issues.

When googling and researching his problems Systemic Lupus kept cropping up plus one or two other auto-immune system diseases. I found that many of my symptoms ticked all the boxes for Lupus! So I went to the GP explained everything and said that I had put everything down to my age and hormonal changes, but since being on HRT nothing had improved. Blood test results supported an auto-immune problem, a referral to Rheumatology followed and I began treatment for some sort of auto-immune problem. I have had a variety of diagnoses in that department including: Undifferentiated Connective Tissue Disease, possible Sjogrens, pallindromic rheumatism and so on. None of the specialsts or the GP I initially saw thought the rash was Lupus related but didn't say what it might be!

The treatment has made things a great deal better, I actually have long periods when my joints are at least comfortable and I can walk without struggling!

Then, in the last year I started to notice a change in the eye- headaches I have been getting for about 10 years, which I believed were Cluster headaches. The pain started to extend to my nose and teeth and didn't respond to painkillers. After seeing my GP the dose of Amitriptyline was increased. So far the pain has diminshed but the odd burst is still quite painful. Upon visiting the GP to discuss this dose increase I saw a different doc. She asked about the rash and when she saw the pictures remarked that it could be shingles. She explained that in rare cases it can cause all of the problems I have experienced, but when researching it I found that it did not explain my blood results!

Oddly enough I have never had a blistering rash or ophthalmic shingles (which would account for TN pain). I have been in contact with people with chicken pox and shingles though. Quite apart from everything else I have on the odd occasion experienced a burning sensation across my ribs/bra strap area. but never had a rash there! My rash on my thigh is just red, raised slightly and never blisters or scabs and doesn't itch. The rash I get on my wrists is itchy. So, I'm still no wiser! On the plus side the doc I saw last week prescribed a high dose of antivirals for me to take as soon as the rash and pains recur. So we shall see.

Best wishes.

oil of cloves is no good! and you would get told off by your dentist as it burns your gums.