Still in relapse (my face and mouth hurt so much!) but your support really helped out!

Support
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Hi Everyone,

Three years ago I was diagnoses with TN but it is an atypical type as I also concurrently developed migraine symptoms that seemed to connect to my TN symptoms. Touch on the back of my head, the side of my scalp, loud or high noises also instigate facial pain or electric shocks. I also have the classical TN symptoms too (lucky me). Over the three years life has nearly gotten back to normal due to medications (Trileptal, Topamax and Botox for migraines and Gabapentin for break through TN pain). I’ve still had constant pain in my teeth and face and facial sensitivity, but I’ve learned how to handle it. I don’t do things like take a yoga class, go to a music concert, listen to music, touch my face for more than a minute or eat ice cream or ice. I’m not a candidate for surgery as my symptoms are “atypical.” I’ve had no real shocks since May :slight_smile: and really this whole year haven’t had many.

Now I’m scared as something weird happened on Friday, I ate a sandwich, stabbed a piece of bacon into a piece of my gum, and wham! I am having these awful symptoms again. Two days now, my lower face is burning, my gums feel swollen (though I know they are not), I feel I’ve had a root canal surgery just this morning (all the f@#$ing time). So far no shocks but I have that awful familiar feeling that I get that one is coming. I can’t sleep tonight due to the pain and don’t even have pain meds around anymore since things were going OK.

I just wanted to reach out and say—I am scared, I hate this, I wish i was normal, I’m scared I will be disabled again by this horrible condition.

The medications make me drowsy and not as quick on the job, which is a job where I use my mind. I hate that my memory and ability to find words sucks now and would get worse if I took more meds. There is just so much I can do when the pain gets bad and be able to work too.

I have had a relapse last year when my pain moved for the first time from only being on my left to my right, since then its periodically been on the right side (which it is now as well). I did get better after that one and resumed my normal chronic pain level.

I’m sure I’m not alone in this and I know some of you have it much worse. I am probably lucky I have been able to get back to work after only two mos. on disability after diagnosis. I just took some advil, which, is all I can do at this point until I can talk to my neurologist this week. Has anyone had a relapse that they then came back from and were OKish again? I wish all of you well in this brave fight to continue on despite this great challenge. Its a good thing to focus on what we CAN still do, I can still love, I can still watch fun TV shows and movies, I CAN still be there for family and friends, I CAN cook, I CAN be of service to clients I work with (for now at least).

Thanks for reading. Wish me luck!!

Update on 2/28/17

I having a small bit less pain but still in relapse, still disappointed, but it helped to reach out. I’m nowhere near where I was at diagnosis, only one shock in public that was out of my control. I just have to accept that I need to go back on the medication whose side effects I hate for now (Gabapentin). I’m happy I can still work, be out and about, and will just avoid fun stuff like kissing and having my hair or face touched.:cry: Thanks again for the ideas about B12 etc.

Lis.

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Hi there
I am so sorry .I am so,so,sorry that the stupid piece of bacon
did this to your mouth,I know what you mean about feeling that things will get worse.I don;t get the shocks but one of my teeth sort of grows bigger than my head.
I am just wondering whether the almond oil with a few drops of geranium oil in it would soothe your gum.Sort of like cuddling a baby.Tell it everything is OK.
You are awesome,and you are normal.You are a normal person in pain.Your pain does not define you . Look at all the wonderful things YOU can do.
Me-I am looking at the snow storm outside and trying to get up the nerve to start shoveling.

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I’m sorry it appears to be coming back. Last year 2016 was a good year for me. I’ve had TN for 12 years. It is a horrible feeling when it starts up again. It may be a good idea to keep meds handy, just in case.
Good luck, Mary

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Hi Lis, know how you feel…
Try not to tense up as this seemed to make it worse for me…
I had it every Winter for 6 years and then year 7 nothing for a whole year, then it came back all over the place for year 8, 9, 10, then for years 11 and 12 I started taking 1000mcg B12 daily - a little tablet under the tongue… then year 13 being 2016 it slowly went away in January -February… I still took the B12 for a couple of months & then backed off to twice a week - it has not come back again as yet…
I had a couple of twinges in Winter, but increased the B12 for a couple of days and it went away… The B12 builds up the nerve sheaths, so when a blood vessel rubs on the nerve, which is mainly what TN is;
if the nerve is protected enough, then it does not cause pain.
Last year I also introduced taking 1/2" of grated Turmeric Root (Curcumin) as it is great for inflammation; which helps my arthritis also.
Turmeric is also a natural blood thinner, so if you use it, tell your doctor,
especially if you are on blood thinning medications…
I am waiting to see if it comes back this year… hopefully not…
But the apprehension is scary sometimes…
My doctor orders a blood test each year to see my B12 levels are not too high and so far all is okay…
Hugs Gail Patricia (GP)

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Oh Lis, you will have plenty of support from this site. All of us in same boat and an awful one it is. We all understand how anxious it can make you, afraid to eat, brush teeth, comb and wash hair and the list goes on. Please know I am wishing you all the luck in the world. You must keep up the good fight. My neuro says the more research done on MS the closer we are to finding a cure. I have just started taking the sublingual B12 that GP1 speak about. I’ve been on it for about a week now. Not sure if it’s the placebo affect or it’s really helping somewhat. I will continue with the 1000 mgs once a day. Please hang in their. There are lots of ideas on this site as well. My oxcarbazapine doesn’t seem to be cutting it anymore am up to 1200 mgs and its just giving me bad memory, tremors in my arm and leg, blurry vision and mild daily headache. Back to neuro in a couple of weeks. He’s trying to push me toward the Rhinezotomy, but I’m scrared as heck to have that done. Read about Anesthesia Delarusso. Don’t want to make things worse. You are in my thoughts.

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Yes, I think this support really helps,since we know what the other people suffering from TN are going through .
Last november I had my second episode with really bad pain . ( first episode was not that bad by far - so I didn- need medication . Now GP put me on Lyrica ( up to 600 mg /day ) . That didn’t help at all - during three horrible weeks . At the end of the third week I almost could’ t swallow, eat or speak . Then my neurologist put me on Tegetrol . This felt like a miracle drug . Instant relief .
I’ve been on 500 mg/day for three months but now my neurologist wants me to come off it ( 100 mg less each two weeks ) . This is day 10 since going from 500 to 400 mg/day and the last couple of days the pain seams to be coming back - each day a little more, not the stabbing pains but more constantly .
Do I really have to stop taking Tegetrol ? Can we take Tegetrol like " forever " . It is still working perfect …
I also have MS and that is the cause of my TN

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Do you get blood tests done?
Not sure why you need to come off it.
If you are getting some of the pain back,maybe you should call your neurologist and let them know.
No way could they get me off a drug that is working-no way.

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Hi Ellen,

Somehow this was the plan . When the neurologist put me on Tegetrol she said that I should stop it after three months . That would be by the end of this month .
When I asked a couple of weeks ago if I neede blood test the answer was : no .
I never got a blood test while on Tegetrol .
May be I should just go to my GP and ask him for a blood test .
Maybe my neurologist just wanders if I can do without medication …
What medication are you on ? How much do you take ? For how long are you taking this ?

Thank you

By the way … yesterday evening I took 100 mg more then the last ten days ( back to 500 mg ) and today felt better . Today again my 500 mg . I will indeed give a phone call to the neurologist on monday .

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Hi
I am not a moderator or an expert BUT with tegretol you should have blood work done.I think if you look it up online it will say that.
Yes-go to your GP
AS FAST AS YOU CAN
and let them know what is going on.
I cannot believe(actually I can believe)that you are being treated this way.
Me-I had dental work done over a year ago and the pain when the freezing wore off was brutal.Seeing i was going to a pain clinic for my back the something went totally screwy and the back doctor was the one treating my facial pain.So they just upped the gabapentin a bit .no referral to neurologist or anything.
It was only when I found this website that I realized how I had been left to slip through the cracks of the medical system.Every doctor I see I tell they have until Dec. 31 to help me.After that the game is over.
So I tried trileptal-lasted 4 days and my doctor thinks I will do better on tegretol.Prescription is at the pharmacy getting made up.
I take tylenol 3 with an over the counter muscle relaxant and gabapentin during the day and marijuana oil and gabapentin at night.
I know for the trileptal (if I stayed on it) my doctor said he would not refill it unless I had the blood work done.
It is pretty important.I wish some of the more senior people were responding to you.
I am just little old me.

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The guidelines state to try titrating down every three months once patient is pain free because TN often goes into remission. I’ve had a flare everytime I tried to come off, but my pain is due to nerve injury and that doesn’t tend to go into remission… I got lab work done every two weeks when I started Tegretol. Now I get it done every four months.

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So I see that the blood work is really needed !!!
Since this flare started I’ve been to the neurologist several times and each time I asked if there needed blood test to be done and each time the answer was : no .

After three weeks on Tegetrol - I still had unbearable pain that only got worse - the neurologist put me on tegetrol . That was like a miracle drug .

The stopping of Tegetrol … my TN is caused by MS ( obvious on MRI ) , so there will definitely be nerve injury and I suppose this will only heal in my dreams but for sure NOT in reality .

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Omieke–I have to disagree with that! There is lots of evidence that the lesions from MS CAN heal in the right circumstances. Or sometimes there is symptom relief, without apparent healing that is evident on a MRI scan. Perhaps there is a limit to how much healing can occur when a nerve is traumatized, but obviously a lot of healing does occur for many people. So I think it is important that we don’t give up hope, and continue to look for ways to promote healing as much as possible.

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Hi ziggy,
This gives courage ! So indeed : don’t give up hope !

Do you have any suggestions for ways to promote healing ? Since the TN is fairly new to me .
The first episode almost 2 years ago started really , really slowly . The first couple of months at that time were like : waw, this is a funny feeling and then a couple of weeks of heavy pain but only if I touched 1 spot at my eyebrows and that was fairly easy to avoid . By the time I had an appointment at the neurologist the pain had stopped , so I didn’t take medication .

This time ( last november ) the pain was much, much heavier and there was " no point to avoid " . So : no control .
I made a mistake in my last post : I was for three weeks on Lyrica ( 600 mg/day ) which did absolutely nothing for me .
And then Tegetrol came like a miracle .I was for three months on 500 mg /day . And now - after ten days on 400 mg/day it feels like things are really going wrong , more pain but no stabbing .
This makes me so nervous that I went back to the 500mg/day since last friday night.

I absolutely hate the anxiety that comes with this condition ! It’s like this is always more our less in my thoughts . ( and I suppose this is not good !!! ) When I’m with friends that I didn’t see for a couple of weeks I try not to talk about TN but always with NO succes !

Thank you for your encouraging words !!!

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I hope things get sorted out for you.
My sister -in-law has MS and medical marijuana has helped her a lot.She is able to enjoy her grandkids.
2 years ago I thought she would be in bed all the time by now-but somehow things have shifted.She can even hold the grandbabies in her wheelchair.
So maybe you need some weed or some grandkids!
I am thinking the neurologist will bump you back and do blood tests.One website say to do a blood test after 3 months.That must the website your neurologist is going by.

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Thank you Ellen .
I’m still 100 % mobile , my biggest problem is the TN .

And for the grandkids … we already have two granddaughters . Twins . And indeed we enjoy spending time with them .
Tomorrow I have an appointment at the GP to have the blood tests done .
Hopefully everything will be O.K.

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You are so blessed to have the grandkids-wow twins
I hope your meeting with the GP goes well and that he or she does the blood tests and bumps you back up.
I started tegretol yesterday-100mg
My doctor wants me on as small a dose as possible.
Does nothing so far.
good luck tomorrow.
Tomorrow I have an appointment with a specialist dentist,not affiliated to the dentist I have been going to.I want one last check to be 100% sure in my mind than it is not dental related.

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hi Ellen,
Hopefully the Tegetrol starts working for you soon . You must absolutely give it a chance and indeed after it starts working , stay on as small a dose as possible . If I could turn back the clock I would be more carefull in trying to stop as soon as possible .

I mailed the neurologist to ask if it is okay to go back to the 500 mg that I was on before trying to stop it . I only went back to 400 mg /day and after a week - 10 days the pain started building up again .

As far as the dentist , I would not give him a chance to do more than just looking, examining . The lowest branch of the T nerve makes us " happy " with a lot of tooth ache . After a lot of " dental pain " since last friday I was ready to make an appointment with the dentist this morning , but to my surprise, the pain was gone when I woke up this morning . I was happy that I didn’t get the dentist to do whatever because I suppose this was also TN pain .

Good luck with the specialist dentist ( tell him about your TN ) and hopefully, when you read this the Tegetrol worked its magic touch !

( sorry for my mistakes - English is not my native language )

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I went to the dentist again also. For the last few weeks, my aching pain was centered on just one tooth (a very old crown). So I created a scenario in my head where that tooth actually had something wrong with it, and all I needed was another root canal, then everything would be fine–the nightmare would be over!

After X-rays and careful examination, of course my dentist said there was nothing at all wrong with my tooth! and encouraged me to follow up with the oral medicine doctor again. I was so disappointed that I actually cried a bit. Unbelievable that I would be so upset about NOT needing a root canal! Over the next few days the pain moved around quite a bit, as if to prove him right.

I’m trying alpha-lipoic acid again (300 mg/day). Last night it seemed to help bring down the pain a bit, but today it is as bad as ever. I have another appointment with oral medicine tomorrow, hopefully he’ll have some new ideas (other than dreadful meds).

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Hi
Your English is fine.What is your first language?
I trust this guy.Famous last words.
I am sure he will just poke around,unless he finds something.
The place the pain has been has been the same since day 1-except for the bony island that crept up through my gum and everyone said there-there-you have nerve pain -go away and then the bony island came through the gum and they could not say that-and now that part of my mouth is fine.
That is why I have major concerns.
And this at a major hospital.
I am so sick of this crap.
He was the one who diagnosed the neuropathic pain a year ago so he is aware of me and my problems.But I think he thought it would have been sorted out by now.
Thanks for the wishes

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Hi omieke, I am wondering what happened with you, did you stop Tegretol? I know that for me, I had to stay on the seizure med (which is in the same family as Tegretol) forever, whenever I try to come off it the intense pain and electric type shocks return. I think for many people TN is episodic so many people can get off the meds apparently and the episode has improved. For others, it is more of a chronic condition that is treated over time. I am less familiar with MS related TN, however, and how that impacts the TN symptoms over time. I am so sorry this happened to you too. I often say to myself how lucky I am that Trileptal was created and thank science for figuring out it helps with trigeminal neuralgia, otherwise, I would likely not have survived this condition.