Can any of you take the time to answer these direct questions? We're new to TN

General General TN & GPN (Old Site)
1

Hi,

My mom was diagnosed with TN recently, and thanks to the internet, we've learned a lot about TN. She's an active 72. She has specific questions about this cruddy sensation you brave TN patients are suffering from. If any of you have any time, we'd appreciate your honest feedback. My mom is looking for honesty, so she can make decisions about her future. We are all bummed out, because what we're reading sounds very grim. If grim is what you feel the truth is, put it out there. Truth is key for her. She wouldn't respect sugar coating, it's not her style. We realize support groups are to be positive, but please, be honest, even if it might not sound easy to take/read:

1. How long have you been living with TN?

2. Have the meds helped the pain go away?

3. If the meds do help, how long does the pain go away for?

4. How often do your spiky waves come?

5. When your spiky waves come, how long do they last?

6. Do you ever get long breaks from your spikes(weeks, months, days without)?

7. Do you honestly believe meds will make this go away?

Thank you for your help, my prayers and good will will always be extended to all TN sufferers forever.

2

Honesty isn’t the most fun around here but is also my preference.


  1. Lived with the full on disease and meds for one year… Mostly in remission from those crappy meds for 10 of those months.


  2. Yes…but could not deal with side effects, fresh out of college at 48 and if you met me, you would have thought I had early Alzheimer’s…


  3. No two here will answer the same…depends on length of TN…is progressive disease…remission can be reached with one med or a combo…eventually maybe not at all.



    Even on meds remission can come and go…that’s where it is important to investigate add on topical creams and patches.



    4, sometimes hard to answer…will get 99 diff answers from 99 diff patients



    5, sorry, see 3 and 4, seconds minutes hours



    6, yes, see 3 and 5



    7 meds can put it on hold…higher doses = less quality of life for many…gives remission , not cure.



    I did have 12 months of no pain at all post op…meds can vary as well as all treatments



After one year of meds I flew to a founding surgeon of MVD surgery.....he wrote our bible on this and teaches it across the globe....... Get his book
Striking Back by Dr Ken Casey

2.5 years later I have 5% pain with topical meds only...... If have TN for decades , or in bad health.... Less than 90 % success with top surgeon

If less than 5 years pain....better than that for success....I feel successful compared to the life I had.

Go to google images......put in trigeminal neuralgia.... Look at those Picts!

Make sure she has a doctor who has TN patients.....knows it....even if you can travel a ways for it

Keep asking!

Sorry if too much...at once
3

Hi,
Sorry your mum is dealing with tn, I’ll give your questions a try.

  1. My tn was diagnosed just under 2 years ago but I had been having some issues for the 6 months beforehand.

2.The meds have helped me a lot but even after all this time we are still tweaking medications and amounts. Some meds left me unable to function so it had been an ongoing challenge. Even now I have noticed cognitive issues that bothe me. I have to keep notes if I want to read a novel, lots of memory problems.

  1. For me it changes day to day, the cold is not my friend so I am finding winter tough.

  2. The stabbing pain I had originally is now reduced but I am having some level of pain every day but it is now a much more tolerable level

  3. It can be brief or protracted, it is so variable.

  4. I get days between major stabs it have some pain all the time but it is at a more manageable level

  5. I did initially but I’m not so sure any more. My tn has recently gone bilateral so I’m not as positive as I was a month ago. Lol

Hope your mum can get the help she needs to become pain free, she is blessed to have a supportive family.

Hugs trish

4

Hi there, seems everyone experiences TN differently and responds to meds in different ways, what works for one may not work for another. Here goes:

1. I've had TN since March last year.

2. & 3. Has deadened the pain some, doesn't take it away completely, usually there but has deadened it to not noticing it so much. Still have bad days along with days that aren't so bad.

5. My really awful ones before meds started working could last up to half an hour (useless neurologist said TN is supposed to only last seconds to a few minutes!). Ended up in the ER twice before meds sorted out.

6. No remission so far. Can but hope!

7. I don't think they will though it's not so bad at the moment. If they don't I might have to see about an MVD but REALLY don't want neurosurgery thanks! Plus I have type 2 as well as 1 and that doesn't respond so good.

5

Hi, I want to start by telling you that there are many people living with TN who’s pain is controlled by medications, or other alternative therapies that live full “normal” lives.

There are NO TWO Cases of TN exactly alike.

I’m sorry for your mom’s recent diagnosis, I hope she has found relief for her pain.


  1. How long have you been living with TN?



    First diagnosed in 2002 at age 29, bilateral TN. After 9 months went into really long remission.

    Right side 8 yrs, left side 10 years. I’m now 41 yrs old.


  2. Have the meds helped the pain go away?



    Yes!! Right side is pain free with Tegretol XR. I was able to work and function normally.

    Although when my left side came out of remission it became resistant to meds…was on 3 high dose meds and had NO relief, tried everything.

    So I had an MVD surgery in April to relieve the pain, so far so good, no pain and only on one med.


  3. If the meds do help, how long does the pain go away for?



    See above.

    There is no general answer for this, Although we all share similarities with TN, I have yet to see any two cases alike.

    I used a microwaveable heating pad to help take the edge off my pain and hold onto some sanity, and I found a lidocaine mixed cream called Emla that helped numb the area as well for short periods of time.




  4. How often do your spiky waves come?

    Different from day to day…


  5. When your spiky waves come, how long do they last?

    This too differed from each day. They could just last a few seconds to lasting hours as the shocks were repetitive.


  6. Do you ever get long breaks from your spikes(weeks, months, days without)?

    8 year remission right side.

    10 year remission left side.


  7. Do you honestly believe meds will make this go away?

    Meds can control the pain, they can’t make it go away. It takes a lot of trial and error to find the right med or combo of meds that work. Each of us responds differently to the meds. But you can live a normal active life with TN and be on a medication.



    (( hugs )) Mimi
6

Its been 30 years. So far no meds really help me. I do get breaks or remissions, mine tend to be seasonal. When I have an attack it can last for 6 hours or more without letting up. Most times its only an hour out two. When I am having attacks it is a daily occurrence, i can almost set my watch by the timing of them. This disease is very personal, it rarely effects any two people exactly the same.

7

Hi--

just diagnosed a month ago but i can tell you the tegretol (generic is epitol) has taken all my pain away at a low dose...

have researched a lot and am also seeing a chiropractor for upper cervical work (very top of neck)

also have begun to use my night gaurd for tooth grinding religously.

What I have learned from my research is there is no normal with this--some people have remissions for years--some people seem to need surgery soon because they can't tolerate the meds or the meds don't help the pain... there is a TN clinic in Baltimore at Johns Hopkins that exclusively deals with TN patients and offers many options for treatment--check out their website! hope this helps!!

8

Hi KeepinOn,
Your mom sounds like a very strong lady. Good for her!
I’ve had TN for 6 years, but I didn’t start getting pain until this past February (I consider myself lucky). I only suffered facial numbness for the first few years, but the neurologists where I live are Morons and never looked into it any further than to say “Oh, you have TN, You’ll just have to get used to it”. Anyway, I started with facial twitching in early February 2013, after seeing 2 other Neurologists in my area I decided to travel 4 hours to San Antonio to UTHSC. My doc started me on Lyrica, very low dose 25 mg 3x daily, and working myself up to 100mg within a month, I skipped 75 mg and dove straight to 100mg, and am now at 150mg 3x daily, but my headaches are still uncontrolled (I have type 2), I have to say, I have gotten quite a bit of relief from the Lyrica, but I find myself becoming immune to the dosage quickly, and fear that unless I go ahead with a surgery (MVD), I will be medicated to the point that I won’t be able to function. It’s ok to be a little loopy right now, during Summer, but I can’t go to work in an elementary school like this. My pain waves are pretty much controlled until my body starts to become immune to the med. then I get pains daily, at different times, they come and go very quickly, just long enough to make me jerk. I hope this helps, and tell your mom good luck, and that it can be controlled.

9

It can seem grim, but it doesn't have to be, it sucks to have it, but once ya do it is about controlling it. I have down days, but I have learned to appreciate good days and they do happen. Finding a good understanding DR and meds or procedure that will help your Mom is most important. Have had TN for almost 10 years, I am 47. When I have my strikes and bad times, increase med. I don't have insurance so my options are limited, but med does help and I am able to function most days! There is a day or two here or there the pain sidelines me, but I would say the good days out number that! This site helps and glad your Mom has you to help and support her.

10

Thank you, not too much to say. I'm seeing my mom this weekend, and I'm going to show her all of this. I'm hoping she'll be having a good day. She had a good day today, so I'm happy. I do appreciate your time and feedback.

Kc Dancer Kc said:

Honesty isn't the most fun around here but is also my preference.

1. Lived with the full on disease and meds for one year.... Mostly in remission from those crappy meds for 10 of those months.

2. Yes....but could not deal with side effects,,, fresh out of college at 48 and if you met me, you would have thought I had early Alzheimer's.....

3. No two here will answer the same....depends on length of TN.....is progressive disease....remission can be reached with one med or a combo....eventually maybe not at all.

Even on meds remission can come and go......that's where it is important to investigate add on topical creams and patches.

4, sometimes hard to answer....will get 99 diff answers from 99 diff patients

5, sorry, see 3 and 4,,,,, seconds minutes hours

6, yes, see 3 and 5

7 meds can put it on hold....higher doses = less quality of life for many....gives remission , not cure.

I did have 12 months of no pain at all post op....meds can vary as well as all treatments



After one year of meds I flew to a founding surgeon of MVD surgery.....he wrote our bible on this and teaches it across the globe....... Get his book
Striking Back by Dr Ken Casey

2.5 years later I have 5% pain with topical meds only...... If have TN for decades , or in bad health.... Less than 90 % success with top surgeon

If less than 5 years pain....better than that for success....I feel successful compared to the life I had.

Go to google images......put in trigeminal neuralgia.... Look at those Picts!

Make sure she has a doctor who has TN patients.....knows it....even if you can travel a ways for it

Keep asking!

Sorry if too much...at once
11

Thank you, Trish. I'm sharing all of this with my mom, so your feedback is appreciated.

Trish said:

Hi,
Sorry your mum is dealing with tn, I'll give your questions a try.

1. My tn was diagnosed just under 2 years ago but I had been having some issues for the 6 months beforehand.

2.The meds have helped me a lot but even after all this time we are still tweaking medications and amounts. Some meds left me unable to function so it had been an ongoing challenge. Even now I have noticed cognitive issues that bothe me. I have to keep notes if I want to read a novel, lots of memory problems.

3. For me it changes day to day, the cold is not my friend so I am finding winter tough.

4. The stabbing pain I had originally is now reduced but I am having some level of pain every day but it is now a much more tolerable level

5. It can be brief or protracted, it is so variable.

6. I get days between major stabs it have some pain all the time but it is at a more manageable level

7. I did initially but I'm not so sure any more. My tn has recently gone bilateral so I'm not as positive as I was a month ago. Lol

Hope your mum can get the help she needs to become pain free, she is blessed to have a supportive family.

Hugs trish
12

Thank you for your time and feedback. We do appreciate it.

Porcelina said:

Hi there, seems everyone experiences TN differently and responds to meds in different ways, what works for one may not work for another. Here goes:

1. I've had TN since March last year.

2. & 3. Has deadened the pain some, doesn't take it away completely, usually there but has deadened it to not noticing it so much. Still have bad days along with days that aren't so bad.

5. My really awful ones before meds started working could last up to half an hour (useless neurologist said TN is supposed to only last seconds to a few minutes!). Ended up in the ER twice before meds sorted out.

6. No remission so far. Can but hope!

7. I don't think they will though it's not so bad at the moment. If they don't I might have to see about an MVD but REALLY don't want neurosurgery thanks! Plus I have type 2 as well as 1 and that doesn't respond so good.

13

Wow, Mimi, your answers were extremely insightful. We do appreciate your feedback. I'm seeing my mom this weekend, so I'll be showing her this website and teach her how to use it. She's having a good week this week. Last week, was horrible for her, so I'm happy she's feeling a little normal this week. It's such a trippy condition.

Mimi said:

Hi, I want to start by telling you that there are many people living with TN who's pain is controlled by medications, or other alternative therapies that live full "normal" lives.
There are NO TWO Cases of TN exactly alike.
I'm sorry for your mom's recent diagnosis, I hope she has found relief for her pain.

1. How long have you been living with TN?

First diagnosed in 2002 at age 29, bilateral TN. After 9 months went into really long remission.
Right side 8 yrs, left side 10 years. I'm now 41 yrs old.

2. Have the meds helped the pain go away?

Yes!! Right side is pain free with Tegretol XR. I was able to work and function normally.
Although when my left side came out of remission it became resistant to meds...was on 3 high dose meds and had NO relief, tried everything.
So I had an MVD surgery in April to relieve the pain, so far so good, no pain and only on one med.

3. If the meds do help, how long does the pain go away for?

See above.
There is no general answer for this, Although we all share similarities with TN, I have yet to see any two cases alike.
I used a microwaveable heating pad to help take the edge off my pain and hold onto some sanity, and I found a lidocaine mixed cream called Emla that helped numb the area as well for short periods of time.


4. How often do your spiky waves come?
Different from day to day...

5. When your spiky waves come, how long do they last?
This too differed from each day. They could just last a few seconds to lasting hours as the shocks were repetitive.

6. Do you ever get long breaks from your spikes(weeks, months, days without)?
8 year remission right side.
10 year remission left side.

7. Do you honestly believe meds will make this go away?
Meds can control the pain, they can't make it go away. It takes a lot of trial and error to find the right med or combo of meds that work. Each of us responds differently to the meds. But you can live a normal active life with TN and be on a medication.

(( hugs )) Mimi
14

Thanks Brian. I'm really starting to understand how differently it effects everyone. I just wish there was some order to this. I think my mom would be able to better deal if there was some normalcy to this thing. I don't know. I just feel so bad for her and you guys.

Brian M Howard said:

Its been 30 years. So far no meds really help me. I do get breaks or remissions, mine tend to be seasonal. When I have an attack it can last for 6 hours or more without letting up. Most times its only an hour out two. When I am having attacks it is a daily occurrence, i can almost set my watch by the timing of them. This disease is very personal, it rarely effects any two people exactly the same.
15

Thank you, it does help. I think I'm in denial a little, but you guys are helping me see it more realistically now. We do appreciate your feedback.

tacocat said:

Hi--

just diagnosed a month ago but i can tell you the tegretol (generic is epitol) has taken all my pain away at a low dose...

have researched a lot and am also seeing a chiropractor for upper cervical work (very top of neck)

also have begun to use my night gaurd for tooth grinding religously.

What I have learned from my research is there is no normal with this--some people have remissions for years--some people seem to need surgery soon because they can't tolerate the meds or the meds don't help the pain... there is a TN clinic in Baltimore at Johns Hopkins that exclusively deals with TN patients and offers many options for treatment--check out their website! hope this helps!!

16

Wow, just re-read my initial post while browsing through other people’s responses. I was quite shocked at the poor writing.
Cognitively I now really struggle to write a coherent paragraph. I guess it is a small price to pay for a reduction in pain but it is something I find very frustrating.

It’s all such a trade off. One of the things that I did not want to give up was driving, I live in an area with poor public transport and really need my car. I hope your mum can find medications that control the pain with not too many side effects.

Hugs to you and your mum.
Trish

17

Thank you so much. Your story sounds very similar to my mom. She's already been trying many different meds. Last week, was really bad, last week, she was only on Tegratol. She just started taking Lyrica on Saturday + Tegratol + her RA med Mexitracte (sp?) On the Lryica (still takes the Tegratol too), she's having a good week. She told me, she doesn't even feel the constant pulsating anymore. That's 3 days without spikes, or pulses. She is loopy, she laughs about it. She's retired, so she's lucky in that respect. We worry her liver is going to take a toll, if she keeps up this level of meds. She's never been a "light weight". Like, I'll take one aspirin to get rid of a headache, and my mom will take like 3-5, always been like that, so she's on 600mg combined meds. But it's working, and she'll keep at it, until her liver says otherwise, at this point. She sounded amazing Mon, Tue and today. It's made me happy to hear her be able to talk without having to stop in mid sentence so she can focus and concentrate of calming her nerves. We do appreciate your feedback, and I can't wait to show my mom your story. Thanks for helping and sharing.

NoX4pain said:

Hi KeepinOn,
Your mom sounds like a very strong lady. Good for her!
I've had TN for 6 years, but I didn't start getting pain until this past February (I consider myself lucky). I only suffered facial numbness for the first few years, but the neurologists where I live are Morons and never looked into it any further than to say "Oh, you have TN, You'll just have to get used to it". Anyway, I started with facial twitching in early February 2013, after seeing 2 other Neurologists in my area I decided to travel 4 hours to San Antonio to UTHSC. My doc started me on Lyrica, very low dose 25 mg 3x daily, and working myself up to 100mg within a month, I skipped 75 mg and dove straight to 100mg, and am now at 150mg 3x daily, but my headaches are still uncontrolled (I have type 2), I have to say, I have gotten quite a bit of relief from the Lyrica, but I find myself becoming immune to the dosage quickly, and fear that unless I go ahead with a surgery (MVD), I will be medicated to the point that I won't be able to function. It's ok to be a little loopy right now, during Summer, but I can't go to work in an elementary school like this. My pain waves are pretty much controlled until my body starts to become immune to the med. then I get pains daily, at different times, they come and go very quickly, just long enough to make me jerk. I hope this helps, and tell your mom good luck, and that it can be controlled.
18

Thank you, Betsy. We're trying to figure out what it takes to control it, and everything you all said and informed me of, is going to help my mom figure this out. She felt like she's the only person in the world with this. We've never even heard of this until she got it. We've never known anything about it, so coming here and talking to you all is a blessing in this serious nightmare we're in. Pray for constant good days, for all the TN sufferers!!!!!

Betsy Carlson said:

It can seem grim, but it doesn't have to be, it sucks to have it, but once ya do it is about controlling it. I have down days, but I have learned to appreciate good days and they do happen. Finding a good understanding DR and meds or procedure that will help your Mom is most important. Have had TN for almost 10 years, I am 47. When I have my strikes and bad times, increase med. I don't have insurance so my options are limited, but med does help and I am able to function most days! There is a day or two here or there the pain sidelines me, but I would say the good days out number that! This site helps and glad your Mom has you to help and support her.

19

1. How long have you been living with TN?

I've been diagnosed with TN since June of 2012..however, i had it for about 5 years before that, but didn't know what it was.

2. Have the meds helped the pain go away?

It took some trial and error with dosage and what not, but the combination i'm on now keeps me pain free most day. Not always. (i take gabapentin, tegreol, and baclofen)

3. If the meds do help, how long does the pain go away for?

If i stay on schedule with my meds, i am pain free most of the time now. Missing a dose brings the pain back. (it's great reminder if i missed a dose! lol)

4. How often do your spiky waves come?

Before i was diagnosed and got my meds all figured out, ...on a bad day, my zaps would be ever few seconds. The smallest movement would trigger one. Walking was a chore, as each step zapped me. However, it wasn't always like that...at first, i would get an occassional zap just out of the blue now and then. Then the frequency slowly increased up, over the past 5 years, to the every few seconds i just mentions.

5. When your spiky waves come, how long do they last?

At first the zaps were just a real quick jolt of pain and then gone..but over the past five years they too increased in duration. By the time i was diagnosed, they were lasting hours..up to all day.

6. Do you ever get long breaks from your spikes(weeks, months, days without)?

Yes. In the first couple of years, i would go months with out a zap at all. Then, again, that slowly went down as they came on sooner, and sooner. It went from months to weeks. (Sorry to be indelicate, but this info may help...i would be pain free three weeks, then when my period came, that whole week was hell. That whole week was almost constant pain.) Then the weeks inched up to just days, then it just seem to be hours, then...well, now without meds it would be constant.

7. Do you honestly believe meds will make this go away?

I KNOW my meds make me pain free most of the time. The side effects are, to me, well worth that. I will take sleepy and dopey over #10 pain, any day of the week. However, as many will tell you, the meds that work for me, might not work for you. But, for now, my meds DO keep me pain free most of the time.

I think one of the most important things your mom needs to know is that she's not alone and there are people who understand how awful this condition is and how hard it can be to deal with on a day to day basis. Please do show her all this and bring her to this site to show her how to join and whatnot.

I can tell you that this site...just this little site, where i can read about other with this condition ..and having a place where i can vent if i need to.....this site, has literally saved my life. I was truly at the point of considering suicide, but just knowing someone else REALLY understood me was so helpful.

Also, you mom is very lucky to have a daughter who cares enough about her to do this kind of "leg work" . It's really hard for some family members to understand and accept the problems this condition cause us in our day to day activities. Having at home support helps a lot.

20

Everyone here I think of often, but your Mom has been on my mind a lot. I know she must be feeling like why at this age! We all feel it at any age. My husband was in the hospital over 2 years and then at skilled care almost another year, they let me bring my dogs to skilled care and since all the patients loved them I got most attached to many seniors there, still am :) I am glad your Mom has you as her advocate, I found many seniors don't have that. Y'all will find how to control this so she will be okay, thrilled to hear she has had some good days, just have to balance meds with side effects, but it can be done. God Bless.