New and questions

Hello all. I'm new to this site and have a few questions. I developed TN in the early part of 2011. I've been doing research on what to expect in the future. From what I've gathered, it will gradually progress, become more severe, with periods of nothing. Has this been the case for any of you? I was also wondering about the heredity of this. My grandfather also had it and committed suicide in the 50's because of it. I didn't connect the two at first because everyone kept saying he had tic deloeroux (Sp?). My research told me they were the same thing. My doctor has said this is not hereditary. I find that hard to believe.

Lauren it can be inherited and if my memory serves me well it is less than 5% of patients who inherit so it is a rare chance with a rare condition, sorry! I have no idea if mine will worsen with the years, I try to work one day at a time, I have other health issues and life would be to awful to play the what if game for me. I am alive and managing today and that does me well. In the almost 7 yrs I have had TN it has had an increase in the level of the pain but I have also learnt how to manage the pain betters the answer is not always, for me at least. Type l I believe can and does go into remission, Type ll less so. There will be exceptions to both of course.< I suggest you use the search box at the top of the page on the right and put in keywords and see what pops up. J

Hi Lauren, just a word of reassurance that when your Grandad was suffering there would not have been the medics and treatments which are available now. I have been pain free for 8 months.

I know they didn't have the treatments back then, but when my father tells me his dad would lay on the floor and sob, it kind of freaks me out. I'm still in the early stages (I hope), but I'm worried about my reaction to Gabapentin. My doctor wanted me to gradually increase my dose once a week for three weeks. He started me on 300 mg. The first dose knocked me out for about 5 hours. I woke still feeling very drugged for a few hours. I had slurred speech and was very unsteady. This concerns me since I'm afraid of any other reactions to new medicine when I need it. Is the a common reaction to starting this medicine?

With an anti convulsant like gabapentin (or Tegretol), yes, it's normal. As your body acclimates to it, the side effects should go away. I was at 1800 mg's per day and not effected at all. This last tritation has made me groggy, but I seem to be bouncing right back. My current dosage is 2700. One thing to consider, these need to be taken equally spaced out and at the exact same time every day to lessen side effects.

Your dad is right. I have pretty consistent constant pain/discomfort. However, in the past 2 months, I have had 4 episodes that have left me on the floor/bed sobbing uncontrollably as the pain is the worst I have ever experienced in my life. Worse than childbirth. I don't want to scare you, just inform you that yes, until you have it under control, that happens. I am surprised that you have not experienced that sometime yourself.

Note that in your grandfather's time, they were not treating with the type of drugs that we have now. I can't imagine if I experienced those high pain episodes more than I do now. The time before last was the first time I had considered hurting myself, rather than dealing with the pain any longer.

The important thing is to have a plan --and to be open and honest with yourself and with your loved ones. I shared with my family how I was feeling and the thoughts scared myself. We immediately put a safety plan into place. I am sure that in your grandfather's time that talking about those feelings were not welcome, and not encouraged.

You do not have to walk out and down your grandfather's path. There are so many more options available to you medically. In addition, it is more accepted today to talk about self destructive thoughts.

Not Hopeless-- From a year of research I have learned:

Besides the med you are on - other monotherapies are

Trileptal (usually kills TN1 within days)

Lyrica

Lamictal

TN is progressive with periods of remission

Meds can stop working over time

If meds make you so you cannot function

One option is MVD - and is best done within 3-7 years of onset

I use/used lidocaine patches for relief

I also found by accident that a session of Reiki made me pain free for 3 weeks --

There are many many tips on here and videos etc. Thats how I picked my surgeon for MVD--one of the top in field

My insurance paid for it because I could not work with those meds in my body.

There are other procedures that can damage the nerve and give relief for months or years

But I found that with TN1 - MVD success rate in the 95th percentile - especially if you have had no previous nerve damaging procedures.

After Diagnosis in Oct. 2010 - I researched soooo much - especially on here - and another face pain site - told my neurologist that I did not want to try a 4th drug - too many side effects for me

Had MVD Oct 2011

Only you know what feels right to you

Many people just blindly follow their doctors -- and most are not highly educated on this - so when you feel better - keep putting one foot in front of the other and come here often !

Hi Lisa. I would like to know the timing schedule of your medications. I am having difficulty getting them evenly spaced as you mentioned. One of the main issues I face regarding med spacing is that I have discovered I can not take my meds after 7pm or I wake up with horrid head and I pain. I’m usually up at 5ish and bedtime around 10pm or 11pm. Thanks.

Lisa (iamrite) said:

With an anti convulsant like gabapentin (or Tegretol), yes, it’s normal. As your body acclimates to it, the side effects should go away. I was at 1800 mg’s per day and not effected at all. This last tritation has made me groggy, but I seem to be bouncing right back. My current dosage is 2700. One thing to consider, these need to be taken equally spaced out and at the exact same time every day to lessen side effects.

Your dad is right. I have pretty consistent constant pain/discomfort. However, in the past 2 months, I have had 4 episodes that have left me on the floor/bed sobbing uncontrollably as the pain is the worst I have ever experienced in my life. Worse than childbirth. I don’t want to scare you, just inform you that yes, until you have it under control, that happens. I am surprised that you have not experienced that sometime yourself.

Note that in your grandfather’s time, they were not treating with the type of drugs that we have now. I can’t imagine if I experienced those high pain episodes more than I do now. The time before last was the first time I had considered hurting myself, rather than dealing with the pain any longer.

The important thing is to have a plan --and to be open and honest with yourself and with your loved ones. I shared with my family how I was feeling and the thoughts scared myself. We immediately put a safety plan into place. I am sure that in your grandfather’s time that talking about those feelings were not welcome, and not encouraged.

You do not have to walk out and down your grandfather’s path. There are so many more options available to you medically. In addition, it is more accepted today to talk about self destructive thoughts.

I set alarms and wake up to take them. Right now I am taking them at 6am, 2pm, and 10pm. I don't have to be up until 8am myself, so I set an alarm for 6am and go to bed with a water bottle and my meds next to me, then I wake up, take them, go back to sleep. Not optimal, but then, neither is the pain. If I am out and about and forget to take my meds at 2, I can now tell.... For me, this is working to keep the monster on a leash... I won't say controlled, but at least in some semblance of it.

Phoebe said:

Hi Lisa. I would like to know the timing schedule of your medications. I am having difficulty getting them evenly spaced as you mentioned. One of the main issues I face regarding med spacing is that I have discovered I can not take my meds after 7pm or I wake up with horrid head and I pain. I'm usually up at 5ish and bedtime around 10pm or 11pm. Thanks.

Lisa (iamrite) said:

With an anti convulsant like gabapentin (or Tegretol), yes, it's normal. As your body acclimates to it, the side effects should go away. I was at 1800 mg's per day and not effected at all. This last tritation has made me groggy, but I seem to be bouncing right back. My current dosage is 2700. One thing to consider, these need to be taken equally spaced out and at the exact same time every day to lessen side effects.

Your dad is right. I have pretty consistent constant pain/discomfort. However, in the past 2 months, I have had 4 episodes that have left me on the floor/bed sobbing uncontrollably as the pain is the worst I have ever experienced in my life. Worse than childbirth. I don't want to scare you, just inform you that yes, until you have it under control, that happens. I am surprised that you have not experienced that sometime yourself.

Note that in your grandfather's time, they were not treating with the type of drugs that we have now. I can't imagine if I experienced those high pain episodes more than I do now. The time before last was the first time I had considered hurting myself, rather than dealing with the pain any longer.

The important thing is to have a plan --and to be open and honest with yourself and with your loved ones. I shared with my family how I was feeling and the thoughts scared myself. We immediately put a safety plan into place. I am sure that in your grandfather's time that talking about those feelings were not welcome, and not encouraged.

You do not have to walk out and down your grandfather's path. There are so many more options available to you medically. In addition, it is more accepted today to talk about self destructive thoughts.