I know there is a similar post to this question already, but I would love for as many of you as possible to give me and Im sure others your feedback to these questions:
1. Has you TN got worse over time?
2. Have you had to increase your meds to control the pain?
thankyou in advance!
Classic TN has not become worse yet, first and only attack 8 months ago. ATN/TNP some days worse then others, but this has been the pattern since it began.
I have not needed to increase the TN meds. I am taking steroids for another condition and this may be helping the ATN/TNP. I am reducing slowly off them, so will find out soon enough.
1. yes
2. yes
But this is not the case for everyone and I am not trying to be alarmist. When the monster first visited I could cope unmedicated (just moaned a lot!), within a year or less ( I take meds, may forget!) it had become unbearable without help.A good topic to repeat for new comers. And those of us who may be forgetful!
Mine has gotten worse and I don't get the small breaks that I did in the past. I have not increased my medication because I was already on pretty good doses and I don't want to be in a "coma" all day. I am very sensitive to medications. I have added lidocaine patches which actually help some. I put heat on more often. I have had to change what I eat, as well. I will probably need to increase someday though, or at least try something else. I am trying to deal with it for now.
Just when I thought my meds were working and I was getting better - BAM!! Have had 2 weeks of hell. I yearn for the days - last August, when I could go almost 2 weeks in very mild pain. Yes, mine has gotten worse, especially in the last month. I do not know why as I have been on the same meds since November 2011. This morning has been an excruciating headache and some breakout pains. I have tried drinking more water, cutting out sugar (again) and hot packs. Glad I will see a new doc in 2 weeks. I have increased the Lyrica to see if that would help and it has not. In fact, the pain has only gotten worse. I did get some relief yesterday (for 1 day!!) and I think it may have been due to the fact that I took slightly more Xanax the night before. Then, again, this THING that we all have has a mind of its own and who can say why we have some good days and some bad days or why it gets worse for some and not for others.
I've noticed over the years that my pain goes up and down with the weather (humidity, temperature, barometric pressure etc). I'm almost always better in spring and summer than in the fall and winter. It's hard to say if it's gotten worse over the years or not due to the cyclic nature of it.
I know I could be just totally off my mark here, and I know there is know scientific proof on this. But... before I had a full time job and I had very intense pain and I was on high doses of neurontin and my neuro gave me a choice of either going higher up or going to a neuro surgeon. I chose to go to the latter and had the gamma knife procedure done. Now four years later the pain is back, not as bad but close. I have a theory that the pressure is off of me that I don't have to work full time. I also know what I have now . Before everything was so new all the doctors all the rigamaroo we've all been thru that stuff!! I was working with a new job at the time before and had extreme anxiety issues going on back then. So things are a lot different for me this time around. The pain is still pretty bad and I now have bilateral. So I would say that it changed but it didn't get worse. I still think that stress is a REAL big factor and if one can not work or work part time... that is the best medicine for us. We'll see as time goes on.....
Peace, Min
A big thankyou to everyone!
The reason I posted this discussion was mainly because when I went to the neurosurgeon
( Supposedly one of the best in South Australia ) he told me that my condition will probably get worse and I will have to increase my medication. He then told me that most of his patients end up begging him for MVD surgery and thinks I should consider the operation before it gets to this stage!
He also believes there is a better outcome if the patients gets it done earlier than later in their TN journey. I have been suffering since August 2010 - with 8 months of remission in-between.
So I thought if I asked everyone out there if they would mind sharing their own personal TN story/journey then it may help me to make a decision.
My medication is working at the moment - yes I do get jabs every day without fail and I get a full blown attack about one a fortnight, however I still think I can live with this. However, I know I cant live with increasing my medication as this will effect my work/life etc.
keep posting people!!! your input will help many others :)
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.
Good luck. Do lots of research and 2nd opinions.
Bobbie - where did you have MVD done? It is great to read about someone who feels "great" after MVD. Did you have TN or ATN? You have peaked my interest in MVD surgery (after saying no, then yes, then no again).
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.
Good luck. Do lots of research and 2nd opinions.
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 Bobbie,
Did an MRI show up your tumors or compressions before the MVD?
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.
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.
Best wishes,
Stef
The MRI did show a compression before the Gamma. It did not show the tumors.
mine i guess. or i didnt feel it this distinctly. it changed. you can treat regular tn.
absolutely, but i think thats pretty standard, our bodies change and we develop drug tolerances.
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.
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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.
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! ♥
absolutely, but i believe that is a normal progression. we develop an immunity to the meds and our bodies change with age.
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.