The past few weeks have been unusually tough for me. I've been so spaced out that I can barely function at work. I'm also more depressed and irritable than usual; having frequent crying spells such that I'm basically an emotional wreck. I re-visited the endodontist who performed a root canal on my tooth where my facial pain originated and he basically looked at me like I was crazy, probably because I've complained of pain in that location for so long despite his numerous confirmations that nothing is wrong with the root canal or any of my teeth. He said with certainty that I do not have TN and if he had to guess what was wrong w/ me he would guess shingles. That left me frustrated and feeling hopeless. I assume that my neurologist has more knowledge on the condition and that I should trust him, but the difference in opinions from my various physicians bothers me. On Monday I called my neurologist to see if he thought I might need a medication adjustment due to my emotional instability, increased pain level, and severe loss of mental clarity. He quickly worked me in and I had an embarrassing teary eyed mental breakdown in his office. He went over the results of my latest MRI's (with and w/out contrast and with a thin cut image of the trigeminal nerve area). He said that no compression was found and that everything was basically normal. He wouldn't even say for sure that I have TN at this point. He called my condition an atypical presentation of trigeminal facial pain or something of that nature. He decided to decrease my gabapentin from 800 mg 3 x daily to 600 mg 3 times daily as he thinks it to be the source of my depressed mood and mental clarity problems. He wants me to titrate up on nortriptyline from 20 mg to 50 mg over the next week. We changed pain meds from 5 mg hydrocodone to 5 mg oxycodone to decrease my acetaminophen intake, but because he isn't comfortable prescribing higher level narcotics he is referring me to a pain management clinic. I'm also having a spinal tap on Monday to rule out anything viral or infectious that could be affecting the trigeminal nerve. What shocked me most was that he recommended that I consider a leave of absence from work until my condition is better controlled. He said that because work increases stress and stress increases pain it can become a vicious cycle for patients with severe chronic pain. The thought of that freaks me out but I know that he is right about the work/stress/pain connection. Has anyone else done something like this? If so, for how long and did it help?
I’ve never had the time to think on this, as each time I had to take leave I was so sick I could not take care my self or was in the hospital. You might want to think in term of will I benefit during this time health wise, can I afford to take time off (even with pay this not cheap and not the same type of pay that you receive as when you are working), what are may doctors plans to get me healthy during this time, will I need to take time off again later and will that time be available to me if I take leave now, would a week, two weeks or three weeks vacation be all that I need? These are just some of my thoughts on what I would ask my self if I had the choice. Hopefully somebody else will have a better answer than mine was. I’m sorry your in a rough spot right now. Just remember it will get better and this just a phase. Hope you are feeling better right now, and are having some pain free time.
Hi,
Maybe it's not a bad idea from your neurologist; what he suggests makes sense, having said that not all people can afford to take time off work - health should always come first, but when you have bills coming in....well, it's not that easy. Still, this is what happened to me - I kept going and going, had a few nerve breakdowns at work, then I started having panic attacks at night, then I had an eye surgery and suffered a panic attack during the surgery, which was the last drop. I ended up in a psychiatrist ER that night and had to take sick leave for a month, my body and mind alike just shut off and I had no choice but to stay home, bills or no bills to pay for. This is maybe what happens if one keeps pushing their limits too far for too long, it happens to healthy peple too and remember your condition and the meds you take make you more vulnerable. You mentioned Neurontin - I suffered from a bad depression while on the medication, many people on here seem to tolerate it ok, but everyone's body chemistry is different and I wouldn't be surprised if you start feeling better mentally when you come off the drug. Whichever choice you make, I hope you'll start feeling better soon. Take care, hugs.
I was also told that I had internal shingle, TMJ, etc. A neurologist gave me DX of TN and I had to take leave while I was getting to the right dose of Tegretol. I had already tried gabapentin & pregabalin with no success.
Often people on Tegretol need an anti depressent of some sort because of the side effects. I was on 1200mg of Tegretol and was crying all the time until they found an antidepressent that worked with it. I also was on oxycodone because vicodin would not work when I had break through pain.
I was told by my PCP and neurologist after looking over MRIs that they could not see a compression. I had many MRIs with and without contrast. However, when I went to see a neurosurgeon with TN experience, he saw a compression looking at the same MRIs. I would ask for an opinion of someone who has experience with TN and treating it. I saw Dr. Follet, Chief of Neurosurgery at Nebraska Medical Center, Omaha, Nebraska. I had my MVD on Oct 18th and have been doing well. I have now been able to ween off my Tegretol (400mg currently) and other meds.
Don't lose hope!
Thanks Mandie ~ Your story gives me hope because we have a lot in common. Congratulations on your successful surgery! :)
If you don't mind my asking, how long did you have to take off while working on your Tegretol dose?
Ginny
Mandie said:
I was also told that I had internal shingle, TMJ, etc. A neurologist gave me DX of TN and I had to take leave while I was getting to the right dose of Tegretol. I had already tried gabapentin & pregabalin with no success.
Often people on Tegretol need an anti depressent of some sort because of the side effects. I was on 1200mg of Tegretol and was crying all the time until they found an antidepressent that worked with it. I also was on oxycodone because vicodin would not work when I had break through pain.
I was told by my PCP and neurologist after looking over MRIs that they could not see a compression. I had many MRIs with and without contrast. However, when I went to see a neurosurgeon with TN experience, he saw a compression looking at the same MRIs. I would ask for an opinion of someone who has experience with TN and treating it. I saw Dr. Follet, Chief of Neurosurgery at Nebraska Medical Center, Omaha, Nebraska. I had my MVD on Oct 18th and have been doing well. I have now been able to ween off my Tegretol (400mg currently) and other meds.
Don't lose hope!
Thanks for your thoughts Kari. These are good things to consider. I have several weeks of sick and vacation hours built up that I was hoping to use for maternity leave after the first of the year when my hubby and I had planned to do invitro. Unfortunately TN had other plans for me, so it doesn't look like infertility treatments will be an option. I'm not sure what progress my doctors and I could make during a leave of absence. The main reason that I'm considering it is probably my lack of mental clarity, which has been causing me to make mistakes at work which normally isn't like me. I work for local government so this is an extremely stressful but important time at my job. I'm afraid of making a major mistake that could have negative consequences. My hubby is currently unemployed though, so my job is our only source of income and medical insurance, etc. which is why this is a big decision for me. If taking 2 or 3 weeks off would drastically improve my condition, I would do it in a second but I fear that the time would pass and I would be returning without having made any significant progress. Maybe I should save the time just in case surgical options become available for me in the future. Hope you're having a pain-free weekend.
:) Ginny
Kari said:
I've never had the time to think on this, as each time I had to take leave I was so sick I could not take care my self or was in the hospital. You might want to think in term of will I benefit during this time health wise, can I afford to take time off (even with pay this not cheap and not the same type of pay that you receive as when you are working), what are may doctors plans to get me healthy during this time, will I need to take time off again later and will that time be available to me if I take leave now, would a week, two weeks or three weeks vacation be all that I need? These are just some of my thoughts on what I would ask my self if I had the choice. Hopefully somebody else will have a better answer than mine was. I'm sorry your in a rough spot right now. Just remember it will get better and this just a phase. Hope you are feeling better right now, and are having some pain free time.
Thanks Oldriska ~ I am also afraid that I'm pushing myself to the limits of a major breakdown. I've had small emotional breakdowns at work already and I am having panic attacks too. I started having panic attacks in my early 20's but had them under control w/ medication for many years until just recently. I would rather take a little time off now if it would help than keep pushing myself to a breaking point that I can't come back from. I do realize that I am very fortunate to have a good paying job with great benefits though, so I find it hard to risk that for any reason. I'm thankful for the legal protections of FMLA. Hope you're having a pain-free weekend.
Oldriska said:
Hi,
Maybe it's not a bad idea from your neurologist; what he suggests makes sense, having said that not all people can afford to take time off work - health should always come first, but when you have bills coming in....well, it's not that easy. Still, this is what happened to me - I kept going and going, had a few nerve breakdowns at work, then I started having panic attacks at night, then I had an eye surgery and suffered a panic attack during the surgery, which was the last drop. I ended up in a psychiatrist ER that night and had to take sick leave for a month, my body and mind alike just shut off and I had no choice but to stay home, bills or no bills to pay for. This is maybe what happens if one keeps pushing their limits too far for too long, it happens to healthy peple too and remember your condition and the meds you take make you more vulnerable. You mentioned Neurontin - I suffered from a bad depression while on the medication, many people on here seem to tolerate it ok, but everyone's body chemistry is different and I wouldn't be surprised if you start feeling better mentally when you come off the drug. Whichever choice you make, I hope you'll start feeling better soon. Take care, hugs.
I took almost 3 months off. Part of that was waiting for job placement with in my company. I was on the phone all day before and I could no longer do that because it was such a bad trigger for me. Otherwise I think I could have got by with 1 1/2 - 2 months, but it will depend on your job and how well you are doing. Tegretol was also pretty hard on my body and a difficult adjustment. I waited longer than I should have and was in pretty bad shape.
If you need the time off take it. You can not place your health on hold.
GinRebekah said:
Thanks Mandie ~ Your story gives me hope because we have a lot in common. Congratulations on your successful surgery! :)
If you don't mind my asking, how long did you have to take off while working on your Tegretol dose?
Ginny
Mandie said:I was also told that I had internal shingle, TMJ, etc. A neurologist gave me DX of TN and I had to take leave while I was getting to the right dose of Tegretol. I had already tried gabapentin & pregabalin with no success.
Often people on Tegretol need an anti depressent of some sort because of the side effects. I was on 1200mg of Tegretol and was crying all the time until they found an antidepressent that worked with it. I also was on oxycodone because vicodin would not work when I had break through pain.
I was told by my PCP and neurologist after looking over MRIs that they could not see a compression. I had many MRIs with and without contrast. However, when I went to see a neurosurgeon with TN experience, he saw a compression looking at the same MRIs. I would ask for an opinion of someone who has experience with TN and treating it. I saw Dr. Follet, Chief of Neurosurgery at Nebraska Medical Center, Omaha, Nebraska. I had my MVD on Oct 18th and have been doing well. I have now been able to ween off my Tegretol (400mg currently) and other meds.
Don't lose hope!
I have been off work since I was first diagnosed in April of 2012. I was unable to perform my job due to the meds, I am an insurance adjuster and drive 100 + miles a day doing claims. I was so dizzy on the tegretol, lyrica and all the others I tried that there was no way I could drive safely, plus I was a space cadet most of the time.
I had my mvd on October 3rd, had a few complications, mostly reactions to meds, but I am scheduled to go back to work on December 2nd tentatively. I have to say, working for an insurance company I have excellent benefits and since I have been there for 9 years, I recieved 80% of my pay as disability, so that wasnt bad, but I am behind on my bills, because I made a ton in overtime money.
If you have good benefits and can afford to take off it may be a good idea, if nothing else you need rest and time to go to the doctors etc.
I do take issue that the neurologist is sending you to a pain clinic, i feel like he is passing the buck, you may want to go and have another consult with another neurologist..just because there is no compression doesnt mean its not TN.
I hope you are doing well today
Wendy
2nd opinion from different neuro with TN patients!
Ritilan was prescribed to me - because I asked for it - so I could have mental clarity
you may also want to see about getting a low dose of an anti-anxiety med -- clonazapam works for many here -- reduces stress = reduces pain ! : )
Keep Venting and learning and asking!
Thanks Wendy ~ I was shocked by the pain management referral. Part of me was relieved because just the words "pain management" make me feel like they must be able to help reduce/control my pain. I really don't care how it's done at this point because I'm that desperate for relief. It does kind of leave you feeling helpless though, as if it's kind of a last resort because no other viable options remain. My mom, who is a nurse at the clinic where my neuro works, was furious when I told her. She also feels as though he's passing the buck and not trying hard enough to treat my condition. I'm now leaning in the direction of taking a few weeks off. I think it would help while adjusting to all of these meds and numerous doctors appointments. I've reached my stop-loss for the year, so it's important to me that I make as much progress as possible as soon as possible since I won't be able to afford as many neuro visits after January 1st. Hope you're having a pain-free weekend and make a smooth transition back to work in December.
:) Ginny
crashgirl said:
I have been off work since I was first diagnosed in April of 2012. I was unable to perform my job due to the meds, I am an insurance adjuster and drive 100 + miles a day doing claims. I was so dizzy on the tegretol, lyrica and all the others I tried that there was no way I could drive safely, plus I was a space cadet most of the time.
I had my mvd on October 3rd, had a few complications, mostly reactions to meds, but I am scheduled to go back to work on December 2nd tentatively. I have to say, working for an insurance company I have excellent benefits and since I have been there for 9 years, I recieved 80% of my pay as disability, so that wasnt bad, but I am behind on my bills, because I made a ton in overtime money.
If you have good benefits and can afford to take off it may be a good idea, if nothing else you need rest and time to go to the doctors etc.
I do take issue that the neurologist is sending you to a pain clinic, i feel like he is passing the buck, you may want to go and have another consult with another neurologist..just because there is no compression doesnt mean its not TN.
I hope you are doing well today
Wendy
Thanks Kc ~ Another neuro opinion would likely be a good idea for me. I have found this to be such a great place to vent, learn, and ask. I have learned so much more here than from any of my physicians. I love the way that you leave spaces in your posts. It makes it so much easier to read, which I have been finding more difficult on these meds. Hope you're feeling well today. :) Ginny
Kc Dancer Kc said:
2nd opinion from different neuro with TN patients!
Ritilan was prescribed to me - because I asked for it - so I could have mental clarity
you may also want to see about getting a low dose of an anti-anxiety med -- clonazapam works for many here -- reduces stress = reduces pain ! : )
Keep Venting and learning and asking!
Good luck Ginny, whatever you decide!
You come first, don’t feel guilty about having to “maybe” take time off from work.
((((( hugs ))))) Mimi
I took 10 months off life --- all for pain -- then took another 10 months off life for mental health restoration for the after affects for TN
SOOOO
Don't even blink or think twice if you can take some time off --- everybody here deserves it -- and so many cannot take time off - you will be glad you did !!
Well, my body sort of made the decision for me. I had a lumbar puncture on Monday, followed by a horrendous spinal headache that is just now letting up, except for a nagging pressure on the right side that is exacerbating my TN pain. I tried working for a few hours on Tuesday but the pain was too bad and I had to leave early. I've been home ever since and have now decided to take my doctor's recommendation and remain off work until December 1st. I hope and pray that I can make some improvement during this time, but have a looming fear that I may return in the same condition in which I left. Thankfully, because I've been at my job for over 9 years, I have enough vacation and sick leave hours built up to allow for that much paid time off. I just hope that I won't encounter any negative consequences when I return.
Hi everyone-- I don't post a lot because I am intimidated and new at this group-- but when reading your posting about taking time off I had to reply... have a lot of people had to take time off? My doctor also recommended I take a leave of absence from work and school, and I had a complete breakdown immediately after. Is this really what it comes to? My doctors keep telling me I am not a candidate for surgery because I am too young, but the medicines don't seem to agree with me-- so I really have no idea where to go from here?... I guess I have the same question as the initial post-- is taking time off the best thing to do for our sanity? But I worry that even after time off I am not going to be better if the doctors are not doing anything for me... this is getting truly depressing... is anyone else feeling this way?
I am so sorry & suggest you see a neuro that has extensive experience with TN. I had an MVD & the original guy was a spine specialist( I originally went to him for my back- he is great with spines) but didn’t know about MRI’s that can show the compression. He does 2 MVD’s a year vs. a Dr that does many.
I am having my 2nd this Thurs 11/15 & very happy this Dr is a TN specialist & I actually found him through this site. Everyone is such a wealth of info & support!
My saga started in 2004 & had 2 other surgeries tat turned out unrelated & didn’t help my pain.
I think you should find another doctor.
Hi Lauren ~ You are not alone. I too had somewhat of a meltdown at my doctor's initial recommendation of taking time off. I also have been deemed too young for some of the less invasive surgical procedures so I'm attempting to find the right combo of medications but like you, I'm having trouble with many of them. I don't know if taking time off will help me or not. I certainly hope that it does, because I feel like I'm running out of options so I'm willing to try almost anything at this point.
:) Ginny
Lauren215 said:
Hi everyone-- I don't post a lot because I am intimidated and new at this group-- but when reading your posting about taking time off I had to reply... have a lot of people had to take time off? My doctor also recommended I take a leave of absence from work and school, and I had a complete breakdown immediately after. Is this really what it comes to? My doctors keep telling me I am not a candidate for surgery because I am too young, but the medicines don't seem to agree with me-- so I really have no idea where to go from here?... I guess I have the same question as the initial post-- is taking time off the best thing to do for our sanity? But I worry that even after time off I am not going to be better if the doctors are not doing anything for me... this is getting truly depressing... is anyone else feeling this way?
Ohhh no -- I don't see it --- there was a little girl on here within the last two years who had an MVD -- You need a TN specialist surgeon to rule that out for you !!!!
Lauren215 said:
Hi everyone-- I don't post a lot because I am intimidated and new at this group-- but when reading your posting about taking time off I had to reply... have a lot of people had to take time off? My doctor also recommended I take a leave of absence from work and school, and I had a complete breakdown immediately after. Is this really what it comes to? My doctors keep telling me I am not a candidate for surgery because I am too young, but the medicines don't seem to agree with me-- so I really have no idea where to go from here?... I guess I have the same question as the initial post-- is taking time off the best thing to do for our sanity? But I worry that even after time off I am not going to be better if the doctors are not doing anything for me... this is getting truly depressing... is anyone else feeling this way?
I agree. The neurosurgeon that I saw (who supposedly treats many TN patients) would only recommend MVD as a surgical treatment option for me. He would not do glycerin rhizotomy (which is what my neurologist sent me there to discuss) or cyberknife radiosurgery due to my age. I elected to wait until all possible medication treatment options were exhausted before deciding to have MVD (due to the cost). It seems so hard for some of us to find doctors who have TN experience. I've learned that you often have to travel and that can be difficult or impossible for those of us with limited financial options.
Kc Dancer Kc said:
Ohhh no -- I don't see it --- there was a little girl on here within the last two years who had an MVD -- You need a TN specialist surgeon to rule that out for you !!!!
Lauren215 said:Hi everyone-- I don't post a lot because I am intimidated and new at this group-- but when reading your posting about taking time off I had to reply... have a lot of people had to take time off? My doctor also recommended I take a leave of absence from work and school, and I had a complete breakdown immediately after. Is this really what it comes to? My doctors keep telling me I am not a candidate for surgery because I am too young, but the medicines don't seem to agree with me-- so I really have no idea where to go from here?... I guess I have the same question as the initial post-- is taking time off the best thing to do for our sanity? But I worry that even after time off I am not going to be better if the doctors are not doing anything for me... this is getting truly depressing... is anyone else feeling this way?