Length of remission, and symptoms

Brain and nerves
1

Hi everyone,

I posted 4-5 months ago when I had my first severly painful bout of TN.

For me it was actually the third "attack" that was so bad that I needed to see my Dr. Before that I had 2 seperate episodes of discomfort that was like an achy tooth/jaw (left side) that lasted for 2-3 weeks.

When it finally hit me hard, I was devestated for about a month. I was given 200 mg Carbamazepine twice a day. By then I had had real pain for a couple of weeks. When I started the drug, I must have been "coming out" of that bout. After a couple of weeks on the drug, I weaned myself off.

Since that time, I have been experiencing some symptoms and I am curious about whether these things are common. First, my pain wasn't the classic sudden shock that many describe, rather it was what I imagined it would feel like to have a dentist doing a root canal without novacane. Triggered usually by eating, but sometimes out of nowhere, the pain would start in my left jaw and rediate up to my left temple. It would last 10-20 minutes, and was unbearable. This would happen about 10 times a day.

As I mentioned, I have been in remission for a while now, however there a some reminders that keep popping up. I was curious to find out it others experience these, and if it is a signal that another full blown episode is near.

First, one that is a constant is a strange feeling on my upper gum near the roof of my mouth. It is not painful by itself, but if I push my tongue against this spot above my second top molar there is a slightly painful sensation that is like the feeling you get when ( I think most kids try this!) you touch a 9 volt battery to your tongue. This feeling is 24/7 for me.

The other (and bigger ) concern is that lately, I have been getting these little reminders on my left side that are really just uncomfortable moments, without actually becoming painful. this happens throughout the day lately.It makes me think that the TN is trying to "push through" and attempt to kill me again.

The other question I would ask is for those that have periods of remission, how long do these breaks typally last for you, and do you get a clear signal that the TN is coming back?

I'm sorry for being so long winded, it is just that there is so much to say, and it's hard to easily explain.

Thanks,

Rick

2

Yeh same here I go about 9 to 10 months between flare ups. However very similar to you the first two were painful.but managed with 300mg of gabapentin twicked a day.

Two weeks ago after being laid up with sciatica, was on the Friday night started with what I thought was a sensitive tooth which end up by Sunday night the worst flare up TN I have ever experienced the pain second to.none, I was on my knees I nearly passed out and was sick with pain, my meds didn't touch it A +E here we go I also ended up at the dentist who did some tests and x rays confirmed it wasn't my teeth but my mouth was very sensitive in the TN area I have had my.medication put up to 400mg 4 times a day ibuprofen 400mg 3 times a day 1000mg paracetamol 4 times a day and like you the pain still gets through I have been.of work as the medication makes me very sleepy and can't drive and the pain when it strikes is painful I usually take myself to bed with my hot water bottle it soothes it, it's not nice I feel for you it's scary because you never know when it's going to strike when it does I panic it's o e thing that frightens me is this x

3

Symptoms vary I get headache I my forehead which I never noticed previously my ear hurtful was numb and had a different sensation to the other side of my face upper and lower jaw hurt and a my teeth ached but the pain was excruciating

4

Hi rick518,

You describe almost to the T what I went through in 2007. In my early years it would come and go as you describe. Sorry to say I do not think "wean off" medication is a viable long term approach. When not in the midst of attacks, there were what I call the "dull pains" that can last for a week or more in the far back molar for example. Attacks in the lower jaw were far better than in the upper jaw because upper would travel up to eye or scalp for example.

For your comparison, I was on 600 carbamezapine for 5 years. Had to increase to 800, a 200 pill every 6 hours - as close to as evenly spread out as possible.

Be sure all is under neurologist care !

eddie13

5

Mine is all under GP they seem to have it controlled ish , but I off exploring in June and happened to see my GP this morning he asked how I was Rough dreadful and he said it will be weeks of being in pain with face neck shoulder back but is still reluctant for me to see neurologist but have to see rheumatologist because they think it is all linked? They think I may have RA, so from the rheumatologist I will be referred onwards to neurologist and orthopaedics fed up is an understatement I've now been off work 3 and a half weeks x

6

Hi Rick .My TN started in 2012 on the right eyebrow and pain on hair wash.i thought it wasn't much to worry about. In Feb  2013 I broke my hip.TN disappeared that day.From then on Iforgot I ever had it. TN came roaring back in cheek, nose, gums,upper lip last December 2014. So I had nearly 2 years remission.I wish I could have  it again,

7

Guys, all youse guys, and you all,

Trigeminueralgia Nerualgia (TN) will not go away.  The flare ups will become increasingly more common as will the pain.  The best way I have found is is to try to disable the trigeminal nerve through stereotactic radio surgery ( SRS or Gamma Knife).  this procedure is not without risks.  In my case, I have permanent numbness on the left side of my face.  This is a small price to pay for elimination of the horrible pain associated with TN.

8

This is my 3rd flare up, I can't get near a neurologist , because it's my 3rd flare up in 2 years I need to have more less time between despite this flare up I neatly passed out was vomiting with pain didn't make any difference they have increased my medication to 400mg 4 times a day of gabapentin 400mg ibuprofen 3 times a day 1000mg paracetamol 4 time a day and the pain still breaks through all be it they break through are getting less and less, so I just dread it absolutely dread it not get anywhere with GP S so it's a case of managing the pain or until.the next flare up may get referred then or see what rheumatologist suggests she may refer me

9

Hi Rick

Sorry to hear you suffer with this terrible disease too.

My symptoms are very similar to yourself in that they are not clasdic either.

I first started with TN in 2011. Like many people I went through dental scenarios before being diagnosed in 2014.

My first bouts used to last up to 10 mins. However I was left with a dull ache afterward for up to an hour. The attacks were predominantly triggered by chewing, hot and cold food/drinks and cold wind or a/c.

The pain was always left sided. From what I can remember for the first few years the attacks were daily for a few months. Then I would go into remission for about a year.

In June 2014 I was given gabapentin. The attacks lasted about 6 months then I went into remission for about 18 months.

The next attacks came and were worse than ever and lasted longer. I was put on Carbamezepine and Pregabalin. The attacks were constant until the meds were increased enough. After 6 months I stopped the meds and was pain free for 18 months.

I have just started with symptoms again but on the right side. Attacks are much longer up to 30 mins and more painful. However between 3 and 6 per day so I have not started taking meds again.

Apologies for the lengthy message Rick but I hope it gives you some background on this disease and how it manifests.

My advice would be to get an MRI to check for vessel compression.

Also I find heat pads help if placed on area where pain occurs during an attack.

For me when the attacks build up I go on a liquid diet for a few days and this helps.

Good luck

JANINE