I was on 75mg of Lyrica but started having side effects so reduced gradually to 25mg then came off them. I noticed I no longer have slowness in reaction and my recall is back to normal for my age. After reading up on Lyrica I decided to steer clear of it.
Im still in minor pain, which feels like a group of toothache, or teeth ache, but that doesn't sound right lol. I just take Paracetomol, which takes the edge off sometimes. I just hope the TN will peter out eventually. In the meantime I'm coping.
Ive decided to check up on herbal remedies, who knows there maybe something out there. But presently I'm taking my daily cod liver oil capsules with vitamin A&D.
Has anyone else tried alternative remedies which has helped their TN?
Gloriana
Hi Gloriana
It's still not confirmed whether I have TN or not. My symptoms are mainly lying down at night. If my left cheek is on the pillow that side aches . If I lye on the right cheek that side aches but it radiates to my front teeth. I thought it may have something to do with my sinus problems that I've had since may last year. My aches goes from the front of my ear down my cheekbone to my gums. I sometimes get a tingling sensation in my head too. I've been the dentist and all looks okay. I do have a small white swelling on my back wisdom tooth gum but the dentist didn't say anything about it. I've been to the doctor again today he hasn't ruled tn out and put me on a higher dose of amitripyline. Does anything sound familiar to you?
Thanks
HI Gloriana,
A woman I know mentioned "cloves" for TN but I know nothing about it.
What is Paracetomol ? I am on Tegretol and Lyrica. It sometimes takes the edge of but not all of it. Thanks!!
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
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