Some time after an injury to my Jaw earlier this year which may have resulted in a anterior disc displacement (Evidenced by subsequent MRI) I woke to a searing pain on my cheek, this particular pain went away and the condition waxed and waned over the many months since and I'm now at the stage where I am in pain most days, though with occasional low pain days.
I get shooting pains down my cheeks (Usually both cheeks) or radiating from the TMJ, but I also have it the pains in a few different locations on my face and head, particularly the back of my head and base of the occiput.
The pain is a of a sharp shooting or electrical type much like I see described here for TN or ATN. I have seen an NHS Neurologist, who ordered an MRI and wrote to my GP to say matter of factly that the results were "normal", but he gave me no confidence whatsoever at all in his ability.
I am on the following medicines for the condition:
- Amitryptaline 20mg at night
- Gabapentin 600 mg t.d.s (total 1800mg per day)
- Naproxen Sodium 250mg twice daily total 500mg
- Codeine 30mg for break-through pain
I have also seen a highly regarded NHS TMJ specialist who has recommended that I manage this condition non surgically and that my symptoms are suggestive of either Myofascial or Atypical Facial Pain. Still my jaw doesn't feel at all right and there is also an element of muscle spasm around the right tmj.
My doctors mean well, but I don't believe they understand the complexities of the condition. In fact one doctor wont even refer me to a pain clinic until I have upped my dose of Gabapentin to the maximum.
I wouldn't describe my pain as bad as some of the people on here so for this I am thankful. There are also a lot of promising drugs and other therapies that I haven't yet tried (And often wonder if I deliberately delay trying them just to leave that avenue open). Still the pain is at a level where it affecting my work and I want to try and stay in my job for as long as I possibly can.
Hi Luke, thanks for sharing were you are on this journey. How do you rate your pain most days on a scale from 1 to 10? I would definitely start a personal medical journal by which you note daily the amount of pain and the medications that you are taking. It sounds like you are really going have to work on this and really try and use all your native intelligence to find the help you need. I think there are a least 3 levels of MRI (each providing more level of details). When my Neurologist could not see any problems she asked me if I wanted to go to the super level of MRI. I was already at the second highest. Which I think she called a MRI-A. For some reason I wonder as well if a acupuncturist might be able help?? I would only use one highly recommended for these type cases. I am also thinking I would be careful with the addictive pain medications since you want to stay working and I am not sure you are at the point where you want to just cover over the pain as there might be something that can still be done or fixed. In a regular TN case, we are just pretty much looking for pain relief and there is no real fix, unless surgery. But I am not sure you are there yet it you get my drift. I am just meandering but keep posting. I have found that by posting and responding to others it keeps me open to options. Sending you healing!! Thanks Luke! Tina
See another neuro and see if they can help you. A lot of times with TN, the MRI shows up negative. If you are feeling all of that, there HAS to be something wrong. Just keep seeing docs until they listen to you. Take care of you and good luck. XXOO
Sorry to you both for the elongated response times I have only just thought to log back on and saw your responses waiting for me. Thank you for taking the time to respond.
To msbluebells Thank you and the information you provided about the different levels of MRI, it is useful to know and it gives me something to approach my Dr about.
In terms of my pain levels they are extremely varied. I can have the odd one or two days with only a 1 or 2. And then other days can be a 5 or 6. I'm right with you on the medications and hate taking the stuff I'm on.
Gabapentin turns me into a zombie and codeine turns me into a dope. But at the moment they are very necessary. One time when I was tapering from Amityptaline in order to take the gabapentin the pain was much much higher and my mind was thinking on carrying out very bad actions on myself.
My pain is of varied types if I explain:
Sometimes it is very sharp shooting pains on either one jaw, or in my ear (Which I know is referred from the jaw), other times the stabbing is on certain parts of my head - it is sometimes helped by my applying pressure with my finger onto the spot - but there is nothing else to do with it. Other types of pain are of a diffuse "burning pain" type of sensation in the back of my head.
My Doctor is helpful but I seem to have to give him direction on what to do. For example the other day we spoke about it on the phone and it took me to suggest the name of another medication "Tegretol" in order for him to perscribe it. But it shouldn't have to be me to suggest these things he should arrive at them himself.
I want to try to edge up the Gabapentin up to the 2 gram per day mark which seems a nice round number. I'm then in two minds what to do if I up my gabapentin further or if I start to introduce the Tegretol. I know that a lot of people have had success with this medicine but that it does have a lot more side affects that some of the other drugs. But when one is in pain these things don't matter as much we just want to be pain free (or less pain whichever we can manage).
I will go and see my GP again as soon as possible to talk about another referral.
Thank you tigi4nikki for the words of encouragement and yes I am strongly minded to "shop around" my docs!
Thanks Kc I think you have suggested this to me before, I'm not sure if they are available on prescription in the UK but I will definitely check. Some of the time (And long may it continue, I pray), the other meds can get the pain down to an intermittent breakthrough stabbing/shooting pain localised in front of the ear, or in the ear itself. Lidocaine and/or capcaisin are both things that I intend to try on the topical side and I will let you (all) know how I get on.
Hi Lukey. Your situation is similar to mine in a lot of ways. Except mine was not from injury. I have degenerating condyles in the TMJ and have anteriorly displaced discs also. I have noticed that it is sometimes hard to distinguish the difference between TMJ pain and TN pain. Once the steroids calmed down my inflammation in TMJ, I could find the TN pain. I have a constant radiating pain from the TMJ to the upper and lower jaw on the left side. I also have a stabbing pain in the temple, it can radiate up or down my face. I also get a weird one just in front of the ear and sometimes right behind the ear.
When you described applying pressure on the spot of pain, it is exactly how I feel sometimes. I told my husband that I didn’t understand why I want to poke my finger right through my temple. It is almost like the pressure of the finger is better than the stabbing, jolting pain. Luckily, my stabbing pain is in 5 minute episodes so I just tough past the breakthrough pain. I haven’t read a lot of people describing wanting to apply pressure to the pain spot. Maybe it has to do with the TMJ cause. I think most people don’t even want to touch where it hurts and here we are poking it (haha). My doctor calls it TN is is treating it as such. I believe it is TN, but it is semantics and wanting a definitive diagnosis, but isn’t changing the treatment plan. My pain is mostly controlled with the gabapentin, lidocaine ointment, hydrocodone, flexeril, and imitrex.
I hope you soon find the answers you want and a treatment that allows you to continue to work as long as you want. I think we all search for that balance.