Hi! Haven't been diagnosed yet....
 

....but after doing some reading online I am thinking I may have TN.

Three times this week I have had an attack of shooting pain that feels like short pulsations of electric shock in my jaw, under my ear. It very much feels like nerve pain.

The first time it came out of nowhere. I was feeling fine at the time. The next morning I woke up feeling like crap, headache, throbbing sinus pressure, nausea and generally feeling weak, tired, and kind of light headed.

The next two attacks came out of the blue again but I felt fine before and after.

I have TMJ and lots of sinus problems, allergies, frequent sinus infections, lots of mucus. My jaw feels tight 24/7 and I clench all the time which makes my ear feel full.

The only thing that I can think of that I did on the days of the attacks was that I had coffee, something I rarely have because I get jittery from the caffeine.

Also, a few days before the first attack I was having blocked ears from sinusitis so I added some nasal decongestant to my neti pot and did a maneuver which caused the solution to go into the eustachian tube. I did this for about five days, including the day of the first attack.

I'm glad I found this forum and would love to hear comments or suggestions on whether you think I may have TN and whether you think the caffeine or the decongestant in the neti pot trick may have contributed. Also, I'm wondering which doctor I should start with. Should I even bother going to my GP or should I just get a referral for a specialist, and if so, what kind of doctor?

Thank you!
:)

Your description of the pain sounds very much like TN though with the other things that are going on perhaps there are other causes. I think you should start with your GP though if it is TN you will want a neurologist at some point. My Internist treated me for quite awhile before sending me to a Neurologist. I recommend you see someone soon. TN, if that is what it is, can escalate quickly, so best to be seeing a doc sooner rather than later. Usually the doc will want to rule out other things. Typical TN is caused by a compression of a nerve by a blood vessel, so I don't know that coffee or what you put in the Neti Pot would have caused the pain if it is indeed TN. Perhaps others will have ideas about that.

Good luck, keep us posted.

Thanks for the reply! I am going to call for an appointment today.

I've been reading up on trigger points in the jaw area and I found a really painful one under where the jaw and ear meet. Now I'm wondering if that is either causing or adding to the problem.

I don't know much about the kind of trigger points you have, it doesn't sound like TN as I have experienced it. I'm glad you are going to see a doctor. I hope you aren't in too much pain and that he or she can help.

Thanks!

I saw my PCP yesterday. He didn't mess around too much, just referred me to the neurologist. I was so glad that he didn't just try to push a prescription on me and run out of the room.

He did say that TN is a possibility. He also mentioned shingles but he doesn't think so because I would have had a rash by now. I asked him about the trigger points and he didn't dismiss it or anything. To be honest, since I've been massaging that area and working on the trigger points I haven't had an attack. It's only been 3 days but I'm crossing my fingers.

My first attack came after I spent a day of scraping wallpaper and painting a ceiling so the trigger point theory kind of makes sense. My Trigger Point Workbook says that triggers in the Sternocleidomastoid muscles can mimic Trigeminal Neuralgia symptoms. Maybe it's just wishful thinking but I'm hoping!

does it feel like a migraine, if you know what that feels like. It's like where the ear and jaw meet? I keep feeling like that and have no idea what nerve pain feels like.

The next day after my first attack it felt like I had a migraine. Not that I ever really had one but from the way I was feeling it sounded like one. Bad headache, nausea, light-headedness, general weakness.

During the attacks the nerve pain was pulsating, like I felt it with each heart beat. The worst pain ever, so bad that I cried out loud enough to scare my dog who was down stairs. Lol. At the time I thought it felt sort of like an electric shock type of feeling combined with pain. It came from the jaw/ear area.

Four days now since the last attack. I've been working the trigger points. My jaw/tmj feels looser and more relaxed. I'm crossing my fingers big time. I think the anxiety of waiting for another attack to happen is almost as bad as the actual pain of the attack. I would be so happy if it turned out to just be trigger points from painting the ceiling.

Thanks for the update and I am so glad that you have seen your doctor and are going to see a neurologist. A lot of what you are saying now does NOT sound like TN to me. I don't think massaging would do anything to prevent a TN attack. And the kind of electric shocks that come with TN are like quick stabs usually or a cluster of stabs, not usually pain that is longer. Good luck. I hope you get some good news and help! It is great that you haven't had an attack for a few days.

Thanks so much!

The pain actually was, like you say, quick stabs. I'm not really sure if working the trigger points is what has stopped the attacks or if it's a coincidence. Which leads me to my next question. If it was TN, would I have had another attack by now? I had three in one week but none for five days now. Once symptoms of TN start would the attacks come pretty regularly or could they be spread out over time?

TN
 

TN is different for everyone as far as the actual pain they experience, as well as the frequency and reoccurrence.
Usually people with TN avoid touching their face or anywhere that may be a trigger. Trigger points will usually bring on an attack.
I have Type II Trigeminal Neuralgia so my pain is pulsating and electric but also constant. Every day.
The site of your TN is similar to mine. Mine starts in my teeth but radiates to my cheek, jaw and into my ear. I was diagnosed a long time ago with TMJ. There are many that believe that is simply a blanket term and is largely overly misdiagnosed.
When my TN goes into my ear it mimics and ear ache or sinus infection. I have been seen many times by my GP to check for infections and there isn't one.
Receiving a TN diagnosis can be a long and difficult road. An MRI and a neurologist are the first steps. Also, if your "attacks" do return you should start looking into medication because, like Jean said, they can escalate quickly.
Good luck!!!

Thanks!

:)

Arrghhh! Had another attack today. I thought I was home free because it's been a week since the last one. So glad I made that appointment with the neuro. :eek:

Oh no! Sorry to hear that :(

How long do you have to wait to see the neurologist?? If it is a long wait you should really start looking into meds.

Luckily my appointment is for Wednesday. Bad timing, being the day before Thanksgiving, and I'm cooking for 20 people, lol, but I was really anxious to get in there and find out what's going on.

What do you think I should expect to happen during the first visit? Will it be more than just an exam?

I really hope he doesn't have to press down on the nerve or anything during the exam. The thought of that is giving me anxiety! :eek:

I'm glad that you have an appointment so quickly. Are you in the US?

I am in Canada. Here we have "free" medical care and have to wait to see specialists sometimes. I was diagnosed, had an MRI and started medication in September but have to wait a couple more months to see a neuro. So I don't have any advice there!

The most important thing is medication. Most of the meds take time to increase dosages and start working so you REALLY don't want to wait on that. Some peoples' TN can really escalate so don't take any chances. The second most important thing is the MRI.

I sent you a private message too :)

Yes, I'm in the US. I was surprised that I only had to wait a week to see the neuro. I'm guessing there was an opening because it is the day before the holiday.

I'm a little nervous about the meds because I am super sensitive to everything. I can't even take children's cold medicine without getting jittery. Lol!

I got ATN after dental work. I am also sensitive to meds. Lyrica was somewhat helpful, but I swelled up like a balloon.

Please search my posts. I ended up on a compounded cream which I put on my face where the pain is. I got/get some good relief from this. I think my neuro was a little reluctant at first to speak with a compounding pharmacist about this, but he eventually did and was surprised that she had other patients getting good results from these creams and the side effects are much LESS than pills.

Good luck with the neuro...good thoughts for pain relief!

Thank you! :)

Is the cream something you put on as a preventive? My attacks only last for about 10-30 seconds so they would be over by the time I applied the cream.

I didn't even know what a compounding pharmacist was so I googled it. Thanks for sharing that info!

I kind of use it like a preventative. it has made a dent in the pain. I still have some pain and certain circumstances, will cause it to flair up badly. But, I appreciate the help...as it is AWFUL pain.
Sounds like you have, for lack of a better word, "traditional" TN, sometimes called TN 1. I have atypical TN or TN2. My pain was constant....24/7. Horrible, boring, deep and relentless. I spent days screaming for hours. Others have more electrical and deep pain for short periods of time. I'm not sure if the cream would work for you....but it might! I also take a tricyclic pill daily, plus the cream. On the good side (for you), I understand TN1 is more responsive to surgery than TN2. Hang in there....I know it is VERY rough!

Thanks, Vowel Lady!

I got my diagnosis last week. I'm taking Gabapentin and am scheduled for an MRI/MRA.

The 24/7 pain sounds terrible. I hope you find some relief soon. Thanks for sharing the info about the cream!