Symptoms move from behind eyes to teeth after 16 years, help!

General General TN & GPN (Old Site)
1

Hi Everyone,

I'm new to this forum but NOT new to TN2. I've had it since Sept of 1998, at a time when even the most excellent Neurologists assumed that women in their 20s who had "headache like" symptoms were developing migraines. My symptoms didn't fit any of the Migraine symptoms reallly and never responded to any of the meds that worked on Migraines but that was the closest thing they could come up with so we started there. Went thru Cluster HAs, TMJ disorder, and of course the all too familiar, "it's all in your head," while implying that I was just a junkie.

After teaching for 13 years - 12 of them in pain, I quit my teaching job because my Teacher's Union wouldn't go to bat for me to get me long-term disability while I figured out what was really going on, I moved up to a tiny town in Alaska where I found an amazing PT who on my first visit asked, "have you ever heard of Trigeminal Neuralgia?" From there, she started some amazing body work called "Skin Rolling," which helped to get my myelin sliding and gliding again. Between that, a less stressful job, some diet changes (avoiding Gluten, Dairy, processed foods, and sugar), lots of PT exercises, and my meds, I was able to make some amazingly significant progress in both improvong my quality of life and tapering down on the opiates for the next 3-4 years.

In the last 2 of those 4 years, I may have overdone it, I'll admit. I eventually got a more professional job again, maintained a new relationship, and started being able doing things besides work again. I learned how to fish for Salmon on fly rod and became the formerly extremely active person I had been before 1998. Then in Septmeber of this past year, the pain came back with a vengence but this time in my teeth and gums. At that point, I still had been living with the pain behind my eyes but it had become so well managed, I was able to live with the daily mild to moderate range it stayed in. But this teeth and gum pain doesn't seem to respond to the same methods and meds.

So I recently started Tegretol. At first, it didn't seem to be helping, was super expensive, made me dizzy at first, and seemed to be affecting my memory and ability to focus at work. I also have to travel 500 miles to a Neurologist in Anchorage for it. Since I didn't think it was helping and I was getting to my last refill, I started to wean myself off of it. Good news and a bad mistake. Once I got close to being able to go off of it comletely, the pain came back to the point where it had been - that point where if you didn't know it was the TN2, you'd be wanting to pull out your own teeth with pliers.

So back on the Tegretol I go, hoping to go on a higher dose eventually to try to get this pain under control. Still, all of these meds and out of pocket expenses have literally bankrupted me once and now I'm in a very sticky situation.

So I'm on this forum to try to answer questions, help others benefit from my long-term experience with the condition, and of course, to get some support myself. Right now I'd love to know of any other meds that help with the teeth and gum pain. I'm not sure why narcotics and gabapentin were more effective on the pain behind the eyes and not effective in my jaw area. Maybe there are simply more triggers that I can't avoid. I'm trying to figure out what those are right now.

I guess that's it right now. Sorry for the long intro but we all have our stories and I think it's interesting to hear other people's journeys with this condition so none of us feel so alone. I'd love to hear any feedback that anyone might have for me or anyone with a similar story.

2

I can’t tolerate tegretol. At all.

Gabapentin and oxy help but do not completely control my pain either. Last pain cucle two years ago, my doctor added trileptal. It knocked all the pain out.

A LOT of TN2 people have great success with adding amitryptiline. The good news is its cheap. I haven’t tried it personally, but I hear it is fantastic for some.

I am waiting to see a neuro for this go around. My gp is uncomfortable prescribing anything other than the gaba and oxy, so my pain remains uncontrolled.

3

Lisa,

I hear you. How long have you had TN? Not that it matters, just curious and it sounds like it's been a while for you too. I've never heard of trileptal but I'll look into it. I tried amiltriptilene years ago and it didn't help, in fact it made things worse but it's hard to really know because there were other factors going on at that time too (my new doc had tapered my other meds crazily fast so I was in agony).

Do you have Type 2? If so, have you tried Baclofen? I've heard it can be very helpful but haven't been able to try it yet. From what I understand it's a type of muscle relaxer, but seems to be the only one I've heard of that works for TN2 so it makes me wonder if it has some other properties or applications.

Thanks for the response. Good luck.

4

I was first diagnosed in October of 2011. Wow, I guess the first cycle was 3.5 years ago. I have TN2, but I do get the electrical shock pains as well. Yay me!

I have not tried Baclofen. It is a muscle relaxer.

I think though I have had it MUCH longer. I think though it was always misdiagnosed as sinus issues and migraines. Funny how I have not had a sinus infection since my diagnosis!

5

Hi,

I have bilateral ATN. I first had it when I was 29. It went away after a year and stayed away for seven whole years. It came back two years ago when I was 37.

We are opposites--mine started in my teeth and has gradually gotten worse over the past two years and has now landed full force into my left eye. I have a lot of migraine type symptoms with this pain. It is incredibly intense.

I have had a lot of success with Amitritpyline and then Nortriptyline up until the eye pain. Tricyclic anti-depressants can be very helpful for ATN type pain. I had very constant, deep, aching pain in my teeth that went up to my jaw, cheek and ear. Now I am forced to try something else and am in the middle of making that decision. Gabapentin is what my neuro wants me to try.

Baclofen can be helpful to some people. I have seen others use it in combination with other meds. My mom has MS and she takes baclofen in conjunction with gabapentin for nerve pain. I think it can also be helpful if you experience muscle spasms. I get spasms around my eye sometimes.

I have also found that stress and anxiety exacerbate my symptoms. I have worked very hard over the past couple of years to eliminate sources of stress in my life. But I am a single mom and work hard so I need to be able to function and live a normal life. This pain makes that very difficult sometimes.

I'm sorry that your pain has come back and you are experiencing new symptoms. TN is progressive for most of us and remissions (some of us are lucky enough to have them) get shorter or become non-existent.

This is the best site for TN I have found and the people on here hold a wealth of knowledge. I hope that you can find some relief once again.

Jane

6

I’m back on this site … Because I refuse to give up finding relief . July 2003 was when this started for me. Severe headaches … Pain behind the eyes … Too many neurologists to mention . Abscessed teeth Apicoectomies … More meds than I care to mention .
I have recently noticed that when I take antibiotics to get rid of sinus infections … I get relief … Could this be teeth related disease damaging nerves ? My teeth hurt beyond belief …but no evidence of anything when I go to the specialist … There has to be an answer …,besides all these nerve calming meds … Is it dietary … Stress. Genetic based … I refuse to live the rest of my life in pain …
Thanks for listening
Lorie

7

Strangely I got relief from antibiotics. I have a working theory it reduces inflammation and so we get temp relief.

Justjane, I was just reminded I can’t take amitriptyline. Sigh. I do take gabapentin. Gabapentin rewires your pain receptor signals. So it doesn’t completely control my pain but it helps. The boring pain is less intense and I canbhet theough the day. I can’t do more that 1200 mg a day or I get zombie like. Even at 1200, I get vertigo like symptoms and have problems mixing my words up.

8

Hi and welcome - A lot of us have the awful teeth pain, especially at night! As a temporary solution, you could see about getting a script for a Lidacaine rinse (I'm not sure if I spelled that right) or even use an OTC topical for some relief. I have the same problem and it can be so intense at times I can't sleep. I recently started back on Lyrica in combination with Topamax and seem to be having a little less trouble with it. I have had this crazy disease for over 30 years but didn't get an actual diagnosis until about a year ago. It has just progressively gotten worse over time.

It has also been recommended to me to only drink fluids at room temperature, which I find a bit had to do but if you can, it might help.

9

It's such a relief to find others in similar situations. My biggest issue right now seems to be that the few meds that do give me th most relief, also cause Suicide Ideation. This happened several years ago with Topamax when it was new on the market and they didn't know all of the side effects. It is a rare side effect but I tried it at 3 different times in my life and even when the rest of my life was going quite well (except for the constant pain of course), the thoughts would come. Now they print it on the bottle apparenty (or so I read somewhere recently). So now, unfortunately, I think the Tegretol might be causing a similar reaction. Don't worry, I have the hotline number and I know I don't really want to hurt myself but these thoughts have been coming more and more often and my ability to focus and be motivated to do my job is getting much worse. I tried weaning myself off of the Tegretol but the tooth and gum pain were so excruciating that I couldn't stay off of it. A catch 22 for sure. Has anyone else had this side effect with Tegretol, Lyrica, Topamax, etc.? Less so apparently with Gabapentin but can still happen. I love my gabapentin, it's the thing that's worked the best with the least side effects, in coordination with the regular apin meds.

I'll look into the Lidacaine rinse - thanks Cathy. Also, if you know of anyone that can make you a Nettle Tincture - "nettles for nerves" - it's a homeopathic remedy that my friend made for me and worked better than any OTC like ambesol or those such things.

10



Lorie said:

I'm back on this site .. Because I refuse to give up finding relief . July 2003 was when this started for me. Severe headaches .. Pain behind the eyes ... Too many neurologists to mention . Abscessed teeth Apicoectomies ... More meds than I care to mention .
I have recently noticed that when I take antibiotics to get rid of sinus infections .. I get relief .. Could this be teeth related disease damaging nerves ? My teeth hurt beyond belief ...but no evidence of anything when I go to the specialist ... There has to be an answer ...,besides all these nerve calming meds ... Is it dietary .. Stress. Genetic based ... I refuse to live the rest of my life in pain ..
Thanks for listening
Lorie
Lorie, None of us want to live the rest of our lives in pain and there are some things you can do to try to help yourself. But, this condition has a variety of causes and triggers as I understand it and they can be unique to your situation and your body. There are things you can do if you have the time, money, and motivation.
Dietary things include avoiding anything that causes infammation: our three biggest inflammers are sugar, gluten, and dairy. IF you can eliminate those things, along with processed foods, you'll feel better. If you can avoid them, you'll still feel better but obviously not to the same degree.
There is exercise that's good for those of us in chronic pain and then there's exercise that will make things worse. Even yoga can make things worse, while running might help - all depending on the person and how the exercise is done. If you find something tha makes you feel better, great. Just double check by journaling how you feel in the next few days too to make sure that you're not triggering pain through too much movement. Many of you might have very flexible joints (hypermobile) and/or muscles. WHile this seems like a good thing, if you stretch to your end range you can inflame the fascia which encloses the nerves and cause more pain. Again, way too comlicated to cover here. I had an excellent exercise program through my PT that recently ended and I've had a much harder time finding space and time to continue on my own. The difference is unbelievable - I MUST find a way to do this again on my own.
Stress - yes. Absolutely for me and I'm sure for many otheres on this site. The more stress I have in my life, the more pain I have. ANd of course, the more pain - more stress. So if you can reduce your stress - do it! For some of us, it's not that easy to actually do.
Finally, find some body work that works for you. A good craniosachral therapist along with massage helped me a lot before I found my magical PT who specializes in chronic pain. Acupuncture can help a lot of people but didn't do much for me and I tried both Chinese and Japanese acupncture. Massage and cranio work well together because a deep muscle massage can help break up the fascia that's "stuck" and keeping your myelin from sliding and gliding properly (the fluid surrounding the nerves). The source can be an old scar and/or far from your head - so don't make them concentarte on your pain areas neccesarily. I still don't quite get how craniosachral therapy works exactly or helps but it's done amazing things for me throughout this crazy pain journey.
So there are a lot of things you can do Lorie to reduce your pain and/or possibly get it to a manageable level. I have never had a period of remission - since Sept of 1998 but I did have 2.5 years of managable pain, during which, as long as I took my meds, I was mostly fine, able to function and actually thrive in life again. Having been at that point and going backwards makes me angry and frustrated. I know I have to start with the simple things again - my diet, exercise, and somehow eliminating more stress but I'm tired and it's hard so I come here to remind myself that I'm not the only one. There are a lot of us struggling and none of us will give up trying to find relief! Stay strong. Good luck!
11

if i make the mistake of drinking cold water/drink,my right side extraction site hurts,and tends to start off some pain,i drink room temp drinks now.

Cathy in MD said:

Hi and welcome - A lot of us have the awful teeth pain, especially at night! As a temporary solution, you could see about getting a script for a Lidacaine rinse (I'm not sure if I spelled that right) or even use an OTC topical for some relief. I have the same problem and it can be so intense at times I can't sleep. I recently started back on Lyrica in combination with Topamax and seem to be having a little less trouble with it. I have had this crazy disease for over 30 years but didn't get an actual diagnosis until about a year ago. It has just progressively gotten worse over time.

It has also been recommended to me to only drink fluids at room temperature, which I find a bit had to do but if you can, it might help.

12

whats nettle tincture. I read a home remedy book,and it said nettle tea and honey is good for neuralgia. Will have to check that again.

christyr27 said:

It's such a relief to find others in similar situations. My biggest issue right now seems to be that the few meds that do give me th most relief, also cause Suicide Ideation. This happened several years ago with Topamax when it was new on the market and they didn't know all of the side effects. It is a rare side effect but I tried it at 3 different times in my life and even when the rest of my life was going quite well (except for the constant pain of course), the thoughts would come. Now they print it on the bottle apparenty (or so I read somewhere recently). So now, unfortunately, I think the Tegretol might be causing a similar reaction. Don't worry, I have the hotline number and I know I don't really want to hurt myself but these thoughts have been coming more and more often and my ability to focus and be motivated to do my job is getting much worse. I tried weaning myself off of the Tegretol but the tooth and gum pain were so excruciating that I couldn't stay off of it. A catch 22 for sure. Has anyone else had this side effect with Tegretol, Lyrica, Topamax, etc.? Less so apparently with Gabapentin but can still happen. I love my gabapentin, it's the thing that's worked the best with the least side effects, in coordination with the regular apin meds.

I'll look into the Lidacaine rinse - thanks Cathy. Also, if you know of anyone that can make you a Nettle Tincture - "nettles for nerves" - it's a homeopathic remedy that my friend made for me and worked better than any OTC like ambesol or those such things.

13

You may find this odd,but it has worked for me,not so much now tho. I used oral B sensitive mouth wash,and colgate sensitive toothpaste with pro argin or something in it.I got the mouthwash cos it was £1 at the time.It wasnt till some days/week later i thought i dont wanna punch my own mouth,and could only put it down to the above 2 products. I look at all remedies on here and will follow what others done. For my gums i use bonjela,it numbs the gums for 10 mins,but its 10 mins relief. Give the sensitive mouthwash a go,may work........

14

I know an amazing woman who knows everything about plants and essential oils - she's a massage therapist and craniosachral therapist as well. ANyway, she said it's Nettles (the plant, don't know which part - it grows like crazy up here but I bet you could find an essential oil anywhere) and an alcohol base (like vodka) but I'd look up how to make a "tincture" on the web before trying it. She just happens to know how to do it. But yeah, I'd try the nettle tea if you have access to some in the meantime - it might work just as well anyway.

I'll try the oral B too. ANything at this point. Thanks Barbara.

15

I think this is a side effect that is more common than thought. And I don’t knkw if it is all pill related. I am battling depression. It is believed to be related to the constant unrelenting pain. Somedays I think to myself it would be good to just stay asleep. But I, like you, know it’s not the answer and for me, would not put my daughter through such a thing. My doctor says its hard to say of its the pill or the pain but the pill gets blamed anyway.



barbara said:

whats nettle tincture. I read a home remedy book,and it said nettle tea and honey is good for neuralgia. Will have to check that again.

christyr27 said:

It’s such a relief to find others in similar situations. My biggest issue right now seems to be that the few meds that do give me th most relief, also cause Suicide Ideation. This happened several years ago with Topamax when it was new on the market and they didn’t know all of the side effects. It is a rare side effect but I tried it at 3 different times in my life and even when the rest of my life was going quite well (except for the constant pain of course), the thoughts would come. Now they print it on the bottle apparenty (or so I read somewhere recently). So now, unfortunately, I think the Tegretol might be causing a similar reaction. Don’t worry, I have the hotline number and I know I don’t really want to hurt myself but these thoughts have been coming more and more often and my ability to focus and be motivated to do my job is getting much worse. I tried weaning myself off of the Tegretol but the tooth and gum pain were so excruciating that I couldn’t stay off of it. A catch 22 for sure. Has anyone else had this side effect with Tegretol, Lyrica, Topamax, etc.? Less so apparently with Gabapentin but can still happen. I love my gabapentin, it’s the thing that’s worked the best with the least side effects, in coordination with the regular apin meds.

I’ll look into the Lidacaine rinse - thanks Cathy. Also, if you know of anyone that can make you a Nettle Tincture - “nettles for nerves” - it’s a homeopathic remedy that my friend made for me and worked better than any OTC like ambesol or those such things.

16

Thanks Lisa. Yeah, I've been through it before. It's a well documented side effect of people who live with chronic pain. It makes sense but we all must fight it and find a way through. The first time around I didn't understand that it's pretty common for anyone in constant pain to feel that way, it seemed reasonable, but I was more ashamed about it. Now I'm armed with a lot more information which helps me for whatever reason. And I've found this site. :)

17

My pain started in my jaw ,teeth , cheek and I'm hoping it doesn't go to my eyes. I feel like if I could have my left lower teeth extracted all will be fine. I'mlearning that with TN its just wishful thinking. II'm very new to this . Been in pain only a month now but I'm sick of it already. My primary MD prescribed Lyrics but my ins. Wouldn't cover it so she started me on Neurontin 100mg three x's a day. Waiting for the neurologist to call with my appt. Actually about a year ago I went to my MD because I had tingling and numbness on the left side of my nose. No pain . MRI showed nothing and neurologist made me feel like I was imagining. Well well see what he says when I go back. Right now there are times I can't eat,brushing my teeth is a challenge . tired of it already. Still working but when those electric shock pains come mid sentence its a challenge and embarrassing. Thanks for sharing.

18

Suxanne,

I'm so sorry you're just beginning. It is exhausting. It just sucks. The good news is that if you get some help, specific to TN right away, you might be one of those lucky ones whose pain goes into remission. I know I'm not a doc but I'm guessing it will take a much higher dose of Neurontin (gabapentin) before you get any relief, it's one of those meds that doses at pretty high mgs, but maybe since you're just beginning these meds a smaller dose will be effective, just don't give up on it due to that too soon.

Also, I'd like to ask other people on this site if they've gotten relief for the teeth with Gaba - I know it works well for the eye pain but it didn't touch my teeth and gum pain and I thought I read other similar feedback here, butt I'm a newbie to this site too so I could be wrong.

Please, do yourself a favor and find a good cranisachral therapist and/or PT who can do both some body manipulation and hopefully give you some gentle exercises that will help. One that specializes in and/or understands chronic pain is even better. If you can afford it or if your insurance will cover it, regular deep tissue massage can help as well because it can begin to "unstick" your fascia (tissue surrounding the nerves) and get the myelin sliding and gliding more effectively again. Often our "stuck sites" (think Ground Zero for why this is happening to you) are not even close to the Trigeminal Nerve. So even if you can't find a good PT or Cranio Therapist - find a really good massage therapist. The physical or "complementary" methods have helped me far more than all of the meds as far as getting longer lasting progressive relief and I wish it hadn't taken me 2-3 years to start stabbing in the dark with a myriad of methods before finding things that actually worked.

Sorry for the long response - I want to help everyone stop hurting so much, I can get carried away!

Good luck.

19

I didnt get on well with gaba. I took nortriptyline and for a while helped most of the pain but didnt rid of it completly. Some say amlytriptyline can help with the teeth and gums.