Anyone here with trigeminal nueralgia?

[Scared2Death]

I don't mean to start multiple threads but I wanted to see if anyone here has had major dental work and has trigeminal neuralgia like me (google it) and if so, did you have any problems with having an attack or breakthrough pain after the procedure? Will the dentist give me the only painkillers that work with my pain just in case?

 

[Phantom]

Oh wow, I feel for you - TN is not pleasant in the least. I can't say that I have this but I do have neuralgic pains elsewhere and certainly I can remember the godawful neuralgia I had with my impacted wisdom teeth putting pressure on the nerves at the bottom - the shooting pain referred through all of the teeth and bottom and top jaw on the affected side (occasionally both together if my body really wanted to make me miserable), up my face, down my ear and throat, made me salivate furiously, made my eye and nose run.... does this sound at all familiar? I know it isn't the same, by a long shot, because TN is reputed to be one of the (if not the) worst pains possible to experience.

As to whether dental treatment might trigger it off - I have to say perhaps. I imagine it would depend on what other things tend to trigger it for you - I know for some sufferers brushing their teeth can set it off, shaving, even just cold air. I don't believe that the trigeminal nerve, itself, innervates the teeth and - as such, it's not going to be irritated by any work on the teeth directly.... but I know that it is involved in the muscles that you use to chew, so I don't know if having to open your mouth for a while (or repeatedly open and close your mouth) might be an issue.

As for painkillers - I was under the impression that standard painkillers are all but useless for TN - and nerve pain in general. I know for sure that even the morphine that I am currently taking is all but useless for the nerve pain I have with my other health issues (I currently have the joy of low dose tricyclic antidepressants and on and off various anticonvulsants to try and manage that part of my pain). What is it that you normally need to manage the pain? Do you get any relief from applying either heat or cold to the trigger areas when the pain starts? If so, I'm sure it would be possible to keep say one of the chemical cool-packs in the surgery in case the pain is triggered.

I just googled quickly and found a post from a dental nurse who does say for one person that dental work can make it worse... but as to how many people have problems with dentistry and how bad, I can't say, I'm afraid. Could you call your dentist and ask them? Or perhaps ask the resident dentists for advice?

I wish I had some better advice for you - or at least some personal experience that was more use. You really do have my sympathy though. Neuralgia is the kind of pain that is (without doubt) worse than any other kind of pain - especially when you have the numbness, tingling, electric shock sensations, weird touch and odd hot or cold sensations along with it. I hope you find a way to manage or control it soon.

 

[Scared2Death]

I take Tegretol as a maintenance med for it but when I have pain of any kind the only painkiller I can take is Diladud, that's the only one that makes it go away. Any other Rx pain med actually sets off attacks.

I should tell my dentist tomorrow though about the TN I'm sure.

Thank you for your kind words.

 

[Phantom]

Oh very definitely tell your dentist, before they start doing anything with your mouth - even just X-rays. I am not sure about the procedure there, but when I registered with my dentist here in the UK, I had to fill in a form with all my current health problems and medications etc, before the dentist started. If you've not already filled out any paperwork, that might be something that you go over tomorrow before you start. But yes, definitely let your dentist know about any meds you're on and the like.

I'm glad, at least, that you're getting some control with the Tegretol and Dilaudid - that's about as potent as you can manage. I'm not honestly sure if dentists are allowed to prescribe opioid analgesics of the potency/legal scheduling of hydromorphone, morphine, oxycodone, etc without it being in a compound with acetaminophen (paracetamol) - that is, I believe they could prescribe Vicodin (acetaminophen and hydrocodone) but I don't know if they could prescribe straight hydrocodone. You might be able to ask him to speak to your prescribing doctor (whoever gives you your regular Rx for Dilaudid) and work something out.

Good luck, anyway - hopefully you can work something out with your dentist regarding the TN. *crosses fingers*

 

[annie778]

Sorry to hear about your condition. It's no fun. I had a transient version of this five years ago and could not work out what was happening to me. At first I thought something must be wrong with one of my wisdom teeth because the pain seemed to be shooting from behind my eye at the side of my head right across my face and ear. So I went to have a dental exam and it was clear. As it was so severe, I also had a brain scan and that was clear.

Mine went away after a few months as suddenly as it appeared. I have problems with my bite and I'm wondering based on what you say whether the two are connected because I noticed my jaw started clicking a few months before the onset (it was the opposite side of the click). I get all sorts of variations of headaches behind my eyes and in my temples depending on what kind of nightguard I wear. It's worth investigating if anything like that can ease your symptoms as there have been some studies on the link between TMD and TN.

 

[Snowbird]

I have TN. From what I've been able to learn there could be many causes for TN. If you want to hear my story let me know but long story short .... it hit hard with a vengance and I was in agony for a few months, almost living in the emergency crying in pain. They thought it was an ear infection because the pain flowed to my ear area and they flooded me with antibiotics. They didn't know what was causing this excruciating pain.

Before I actually got to see a neurologist I had self-diagnosed the condition myself online by typing in my symptoms. Then when I found TN in the list I typed in TN, finding my way to a TN group. It was there that I learned that chiropractic could help. Well I checked with my chiropractor and she said she was familiar with the condition and she thought she could help me.

One visit got rid of 80% of the pain and a follow up visit removed the rest. I think it's the manipulation of the muscles, etc. around the 5th trigeminal nerve that does it.

By the time I got to see the neurologist and had the tests, MRI, etc. he diagnosed me as having TN that responded favourably to chiropractic. As my symptoms were gone by then there was nothing he had to do for me. I am on no medications and never have been. I also have had no surgeries for TN.

About once a year I might feel the tingling on my face (as though as spider was crawling up my face) and I know I need to go back to the chiropractor. One adjustment does it.

I do have the clicking of the jaw (which the chiropractor also works on)

 

[annie778]

That's really interesting Snowbird. It's great that you had such a successful result.

I do have the clicking of the jaw (which the chiropractor also works on)

With the jaw clicking thing, I didn't realise a chiropractor could work on that. Do you find any improvement after visits?

 

[Snowbird]

There is a teeny bit of improvement on the jaw clicking but the chiropractor told me this might be the case.

There was a lady who was involved in the TNA (association for TN) here in Canada. Her husband had a severe case of TN and she read the story I had submitted to the TNA magazine about my sucess with chiropractic. She hunted me down and was able to fax me asking me to phone her. I did and gave her my e-mail addy and we've been corresponding for about 2 years now. On my recommendation she had her husband begin chiropractic and I'm pleased to say he is off his medication and hasn't had any flare-ups since he began the chiropractic. So it works for others too and that makes me happy.

 

[mortified]

Hello Snowbird,

I am in Canada. I am actually in Ontario. Where is your chiropractor? Does he do upper cervical manipulations? Can he suggest someone in Ontario Canada. I am an hour or so from Toronto not too far from Hamilton, and a few hours away from London Ontario. Would appreciate any feedback. I have TMD, and terrible neuralgia with headaches. Looking to find someone who can help.