Speaking only for myself... Thus far, my attacks (pain-cycles) have come and gone about every 2 months and have lasted for approx. two months. As each new cycle goes on, my pain has become more excruciating and intense. The focal point of my particular "Face-Taser" jolts have shifted from left-lower gum-line to left cheek: behind L. eye/L. nostril. I've read accounts from some people here that are in constant pain, and I'm grateful that my "jolts" come and go. Keeps me on my toes-- ;-) Rick
wow...I have type I and was diagnosed Sept 2011. I have since had a few weeks of minimal pain and MORE weeks of increasing pain - I too believe the weather has something to do with everything...the more we have weather fronts come through the more I HURT. I look forward to the spring / summer time! My med has been Tegretol. I am on 400mg, taking it 4 times a day (100mg ea). I started out at 200 mg. I am to see a neuro (first appt is set for APRIL 30...really??!!) - my GP is going to speak with the neuro to get me in sooner... - so we will see what happens then with my meds. My pain has gone from the constant'ish to those "jolts" for the past 3 days, have been able to work and feel almost human! Thankful for these reprieves!
Hi Bobbie! I had my MVD done in Wichita also - but it failed & I'm in more pain now than EVER...now it is constant, where as before I had at least a few hours inbetween the severe pain. I really think my TN is actually "Atypical TN" & are afraid of having another MVD or Gamma knife because I've read they don't work well for Atypical TN...my neurosurgeon still suggests I have either procedure done & says he thinks it will be successful this time...it's so difficult to know what to do...& who's advice to follow! I wanted to say that I'm really happy you're pain free, though! That is my wish for EVERYONE with this terrible condition!
Bobbie said:
I had my MVD done in Wichita, KS. The surgeon who did mine recently left the practice though. I had Type 1. The surgeon removed tumors and found 2 compressions on my trigeminal nerve. He was so happy he found something. The scar is big but my hair covers it. Overall, I have to say it was a good experience. I have damage to the nerves but totally 100% better than the constant pain and shocks that we live with as suffers of TN.
There are some great surgeons out there. Find one that has done this at least 5 times. Someone understanding of the pain we live with. I was told when I had Gamma that I might have to come back again or do the MVD. They were right.
Hi D! I just started on Lyrica last week & am still on Neurontin (have been on in for many years & has helped me as a mood stabilizer) but I need to talk to my Dr. about whether he wants me to taper off Neurontin now that we're giving Lyrica a try. With the horrific experiences I've had the past few weeks with neurologists, neurosurgeons & regular physicians just trying to get this pain level down & hopefully not constant like it has become...I sometimes wonder if these Dr.s just close their eyes, open a medical book on TN & just pick the 1st line of treatment they see, just to shut me up! ;p
D McGinnis said:
Lefty - are you on both Lyrica and neurontin at the same time? I had a bad experience with neurontin, but I think I just increased it too fast. My doc at the time, did not really want to treat me and did not monitor the side effects real well or tell me that over time, the side effects would lesson. I am now on Lyrica and it is not working at all. I am seeing a new doc in about a week and was going to ask him about taking both Lyrica and low dose neuronting for a while. I have ATN that is becoming bilateral.
I was put on Lyrica - was taking 6 per day and it didnt even touch the surface, so I went back to Tegretol :(
D McGinnis said:
Lefty - are you on both Lyrica and neurontin at the same time? I had a bad experience with neurontin, but I think I just increased it too fast. My doc at the time, did not really want to treat me and did not monitor the side effects real well or tell me that over time, the side effects would lesson. I am now on Lyrica and it is not working at all. I am seeing a new doc in about a week and was going to ask him about taking both Lyrica and low dose neuronting for a while. I have ATN that is becoming bilateral.
I have had TN since 2010 but still only on Tegretol 200mg - with jolts nearly all day on and off. AM now wondering if i should increase my dose or just live with the jolts? - If the full blown attacks come back then I will increase for sure, I cant live with them!!
cris said:
wow...I have type I and was diagnosed Sept 2011. I have since had a few weeks of minimal pain and MORE weeks of increasing pain - I too believe the weather has something to do with everything...the more we have weather fronts come through the more I HURT. I look forward to the spring / summer time! My med has been Tegretol. I am on 400mg, taking it 4 times a day (100mg ea). I started out at 200 mg. I am to see a neuro (first appt is set for APRIL 30...really??!!) - my GP is going to speak with the neuro to get me in sooner... - so we will see what happens then with my meds. My pain has gone from the constant'ish to those "jolts" for the past 3 days, have been able to work and feel almost human! Thankful for these reprieves!
Just wondering.... would you consider a second MVD op? Lori (Lefty) said:
Hi Rachel! Great question - I think about that a lot also! Mine has progressed over the past 3 yrs since I was diagnosed, but has really taken a BAD turn since I had a failed MVD last Sept. I'm trying different meds to control the pain - just started Lyrica & have been on Neurontin for over 10 yrs. My neurologist tried Carbatrol but it made me really sick. Each person is different though. I'm now seeing a great pain management Dr. who really wants to work with me to get my pain to an acceptable level again - to have a better quality of life again! Hang in there! Will keep you in my prayers! ♥
wow, its so refreshing to hear a positive outcome from MVD! All the best for you, and thankyou for staying on this site to instil some hope in others still suffering :)
Bobbie said:
I started Caritrol 4 years ago at 200mg a day. within a year I was up to 1000mg a day. The second year I was at 1500mg and had Gamma Knife done. I was 75% pain free and down to 600mg a day for 8 mos. The pain increased dramatically and I upped the meds to 2000mg a day plus valium, percocet and oxycodone. I was incompacitated. I had MVD done in May. Currently I am pain free and drug free. Its amazing.
I agree Stef, we should seek as much knowledge about our condition as possible. Goodluck to you and thankyou
Stef said:
Hello Rachael,
1) Yes, my pain levels upon onset of symptoms in 2003 typically did not reach above 5-6.
2) The amount of medication needed to control my pain has increased dramatically through the years.
*I am a Type II TN sufferer. At some point, I would like to repeat this question in the Atypical TN subgroup, as I would like to determine for myself, as best possible, if said type is always a progressive disorder.
oh my gosh I was coming on here specifically to start the very same discussion, I coudl break my heart the last two days, I have had TN and ON for 7 months and it was becoming bearable to a degree however the last two days I could cry constantly even eating drinking putting make up on and walking outside triggers off excruitating pain. I would say that I live daily with pain, on a scale of 0 to 10 and 10 being the worst, of 6 but it has been 10 for the last two days. I feel there is NO hope of me living a normal life :( hugs to everyone affected by this horrible condition
Everything you have said echoes exactly my words. I have had TN since August 2010 with an amazing 8 month remission before it came back. To be honest I thought I was 'cured' for a while there! The triggers are so damn weird to say the least - like you mentioned, drinking, putting on makeup etc. I found drinking out of a straw helped as the cup leaning on my bottom lip caused an attack every time!
I can have days where I cant wash my face because of an attack, yet othertimes I am fine ( go figure!)
I often feel the same as you, that there is NO hope of living a normal life. Even when im on medication and it pretty much stops the attacks, I still get constant jolts all day to remind me the monster is still there.
I have never suffered depression in my life before, however this condition at times certainly tests me to the enth degree. One thing I will say is this - dont let it steal your smile ( even though that too can cause an attack ) Try and make the most of your good days and get plenty of sleep through the bad days ( I find sleep is sometimes my only comfort) Although this is not always realistic when you have to go to work :(
I just wanted you to know that your not alone xx
NY said:
oh my gosh I was coming on here specifically to start the very same discussion, I coudl break my heart the last two days, I have had TN and ON for 7 months and it was becoming bearable to a degree however the last two days I could cry constantly even eating drinking putting make up on and walking outside triggers off excruitating pain. I would say that I live daily with pain, on a scale of 0 to 10 and 10 being the worst, of 6 but it has been 10 for the last two days. I feel there is NO hope of me living a normal life :( hugs to everyone affected by this horrible condition
Hi Rachel thanks for your reply, I take anti depressants and think that is the only reason I have not been crying all the time as the citalopram I take stops this anyway. I am not even in a postition to return to work at the mo and as a single parent with a mortgage I have more than just my health to be concerned about. I truly would not wish this condition on anyone. I dont feel able to even plan a day out in advance. NY x
Did you say that you have had TN for a total of 7 months? So far ive had no time off work, although there have been some pretty tough days that Ive wished I didnt go in. I just like Im letting people down and this in turn causes me to be sad.
What avenues are you going down now as far as any appointments, medication or even surgery? NY said:
Hi Rachel thanks for your reply, I take anti depressants and think that is the only reason I have not been crying all the time as the citalopram I take stops this anyway. I am not even in a postition to return to work at the mo and as a single parent with a mortgage I have more than just my health to be concerned about. I truly would not wish this condition on anyone. I dont feel able to even plan a day out in advance. NY x
I was diagnosed less than 2 years ago and have just continued to get worse. We are playing with my meds, but they had me on such a high dose, the dizziness because unsafe as I am home alone a lot and was falling. So they are decreasing again.
Where I go from here, we dont yet know...new meds perhaps...and they are thinking I should talk to a neurosurgeon...not sure i am near ready for that yet though.
Hi Rachel, I have been on tegratol and cocodamol since July 2011 until I saw a Neurologist prviately and he recommended Gabapentin. I took all three med's for a further two months and was then successful in withdrawing from cocodamol ( I was on the max of 8 per day so took a few weeks to come off it!) ....Whilst on all three medications I was extremely tired and forgetful and even after stopping taking the co-codamol I was not that much better in terms of energy levels. I have now stopped taking Tegratol completely about two weeks ago and have increase from 3x Gabapentin a day to 6. I really thought that all was going well and my plan to go from 3 meds to 1 to return to work in a much less "zombie" like state was coming together. Then 4 days ago the pain kicked off again to the point of it feeling like it did back last July before I was on any "neuralgia specific med's" and the pain that has only ever been on the left side of my face and head has now moved over to the right and so double trouble !! .......I dont see me being able to return to my role as a Professional in the foresee able future and I am now awaiting a date to see the Neurologist under the NHS.
I have read many times of people being on Gabapentin. This medication has never been offered to me. Ive bben on Lyrica and now Im on Tegretol. I am on a 'baby' dose as my neuro tells me, but I refuse to increase it due to the side effects.This dose already makes me feel very forgetful and I am terrified of having to give up my job / my life!
I have heard of a few people getting bilateral pain? why does this happen!? Its all so confusing.
I live in Australia so I dont fully understand how your system works in comparison to ours. About 50% of the population here have private health insurance and 50% dont. Basically we can all see a Neurologist however if you are in private health insurance you get to hand pick who you see. This also applies to Neurosurgeons, although many of them ( especially the good ones)wont operate on you unless you have private health insurance.
I am lucky enough to have insurance, but it still costs me a swag each time I go see one of them.
I really hope you get settled on you meds enough to return to some form of work, I really do feel for you. To be honest I am really hoping I dont get to the stage your at! This is why I am looking down the path of having surgery, before it gets so bad my life is a blur.
NY said:
Hi Rachel, I have been on tegratol and cocodamol since July 2011 until I saw a Neurologist prviately and he recommended Gabapentin. I took all three med's for a further two months and was then successful in withdrawing from cocodamol ( I was on the max of 8 per day so took a few weeks to come off it!) ....Whilst on all three medications I was extremely tired and forgetful and even after stopping taking the co-codamol I was not that much better in terms of energy levels. I have now stopped taking Tegratol completely about two weeks ago and have increase from 3x Gabapentin a day to 6. I really thought that all was going well and my plan to go from 3 meds to 1 to return to work in a much less "zombie" like state was coming together. Then 4 days ago the pain kicked off again to the point of it feeling like it did back last July before I was on any "neuralgia specific med's" and the pain that has only ever been on the left side of my face and head has now moved over to the right and so double trouble !! .......I dont see me being able to return to my role as a Professional in the foresee able future and I am now awaiting a date to see the Neurologist under the NHS.
I have seen a neurologist twice since 2010 and all he could offer me was more drugs, which make me feel terrible. I felt he couldnt help me anymore so I went to a neurosurgeon. Now it seems all he can offer me is MVD surgery! I feel that this is going around in a merry-go-round and I cant trust or put my faith in any of them :(
So far the only thing that has made any sense to me is this site! I know how you feel.
LoriB said:
I was diagnosed less than 2 years ago and have just continued to get worse. We are playing with my meds, but they had me on such a high dose, the dizziness because unsafe as I am home alone a lot and was falling. So they are decreasing again.
Where I go from here, we dont yet know...new meds perhaps...and they are thinking I should talk to a neurosurgeon...not sure i am near ready for that yet though.
I thought I was going crazy. After reading your post I know I'm not. I have terrible Left sided pain most of the time. With the increase of meds it decreases the pain for a little bit then it goes back to being bad. Lately I have been having electrical shocks and stabbing pain on the Right side. I was beginning to thing I was loosing my mind. I'm at such high doses of Tegretol and Neurotin I just don't know what to do next. Glad to see I'm not crazy for having attacks on both sides, sorry we are both experiencing it.
Gloria E. said:
Hi Rachael, I too have gotten worse and have had to increase my meds, I started with Type II Atypical on the right side. Then it progressed to both sides (bilateral) but still more prominent on the Tright side. Finally I now have both Type I and Type II on both sides.
My meds (Neutontin/Gabapentin & Hydrocodone) have also increased, but I still have some wiggle room left, My neurosurgeon refused to do MVD/Gamma Knife on me, because he follwed his patients post-op and found that for Atypical patients, surgery either doesn't work, or works for a while but then comes back OR (and this got my attention) can make the pain worse.
I'm so glad I didn't have the surgery!!! I've heard so many horror stories from members who had MVD and ended up with a laundry list of complications that completely took over their lives. It breaks my heart that so many are so desperate for relief that they submit themselves to procedures that don't give them the relief they need.
Even if you are a good surgical candidate (Type I) there's no guarantee that the surgery will go well...case in point, one of our moderators here had MVD done last May, but has been in and out of intensive care with cerebral spinal fluid leaks, menengitis, brain infection, lost part of her skull and her current four week hospital stay is for more surgery to try to manage brain and skull issues. Her Type I pain is gone - but at what cost? I'm not trying to frighten anyone. I'm recommending that anyone contemplating any procedure to - at the very least - do your reasearch and know what type you are, in addition to the success rates for the different types. _ Many of us are able to manage and maintain on medication without surgical intervention and have a moderate to good quality of life. Review and explore your options carefully and be prepared for all the possibilities. Be informed and be your own advocate.
I have been to 3 different neurologists until I found one I was comfortable with and he brings me in at least once a month now to see how I am tolerating the medications. Now that I am tapering back off the gabapentin, the pain level is just getting back to the intolerable level. He is suggesting Lyrica an an alternative along with the tegretol. I hate feeling like I am whacked out all the time...worse when I need to take the oxycone when I cant deal with the pain anymore.
I thank god for this site, just the insight I read from so many helps, for the longest time I felt like I was imagining my symptoms because I got no answers!
Thank you all!
Rachael Manhall said:
Hi Lori,
I have seen a neurologist twice since 2010 and all he could offer me was more drugs, which make me feel terrible. I felt he couldnt help me anymore so I went to a neurosurgeon. Now it seems all he can offer me is MVD surgery! I feel that this is going around in a merry-go-round and I cant trust or put my faith in any of them :(
So far the only thing that has made any sense to me is this site! I know how you feel.
LoriB said:
I was diagnosed less than 2 years ago and have just continued to get worse. We are playing with my meds, but they had me on such a high dose, the dizziness because unsafe as I am home alone a lot and was falling. So they are decreasing again.
Where I go from here, we dont yet know...new meds perhaps...and they are thinking I should talk to a neurosurgeon...not sure i am near ready for that yet though.
Its fanatstic that a neurologist has taken enough interest in you and your condition that he wants to see you regularly! One of my biggest fears with this condition is having to increase my meds so that I am feeling out of it all the time. I have a very outgoing personality and I dont think I could cope with feeling like that! Already this condition has ripped a part of apart :(
Completely off track here, but have you got ragdoll cats? I saw your profile picture haha I have a ragdoll ( seal point ) and a ginger moggy :) I have to say that when the pain gets unbearable, I sometimes lay my face on their warm soft bellies and listen to them purr. Obviously the pain doesnt go away but its comforting all the same.
I totally agree with you and many other when they say this site has helped so much!
LoriB said:
Hi Rachael,
I have been to 3 different neurologists until I found one I was comfortable with and he brings me in at least once a month now to see how I am tolerating the medications. Now that I am tapering back off the gabapentin, the pain level is just getting back to the intolerable level. He is suggesting Lyrica an an alternative along with the tegretol. I hate feeling like I am whacked out all the time...worse when I need to take the oxycone when I cant deal with the pain anymore.
I thank god for this site, just the insight I read from so many helps, for the longest time I felt like I was imagining my symptoms because I got no answers!
Thank you all!
Rachael Manhall said:
Hi Lori,
I have seen a neurologist twice since 2010 and all he could offer me was more drugs, which make me feel terrible. I felt he couldnt help me anymore so I went to a neurosurgeon. Now it seems all he can offer me is MVD surgery! I feel that this is going around in a merry-go-round and I cant trust or put my faith in any of them :(
So far the only thing that has made any sense to me is this site! I know how you feel.
LoriB said:
I was diagnosed less than 2 years ago and have just continued to get worse. We are playing with my meds, but they had me on such a high dose, the dizziness because unsafe as I am home alone a lot and was falling. So they are decreasing again.
Where I go from here, we dont yet know...new meds perhaps...and they are thinking I should talk to a neurosurgeon...not sure i am near ready for that yet though.