I go for my first Neuro MD visit this Friday and I'm so scared of being misunderstood and just classified as a chronic pain patient. Im an RN and value my good work history. In 13 Years of working as a nurse I have only missed one day of work.......until this week. Because 2 weeks ago my life changed. I had noticed some pain in the left side of my jaw that seemed to be moving between two different teeth so I thought it was a dental issue. So like may others with TN I went to see my endodontist. After a good exam and several xrays, against his better judgement he agrees to do a root canal on one of the teeth I believe is giving me the problem. He finally says "you know I dont feel right about this, because I really don't think this is the problem" He never used the TN diagnosis he just said he thought I had a Nerve Problem.......WOW, NO SHIT......YOU THINK??????? So he gives me a RX for tegretol tells me to try this and see my Primary Care Provider. So I leave his office crying, I just knew this was the answer to my pain. So I toss the RX in the car and run home to do what nurses do best....self-diagnose and all the signs point to TN. Wow that disorder we briefly discussed in nursing school then moved on. I have pain off and on all day, sometimes just out of nowhere, but my triggers eating (not during the meal about 5-10 mins after) cold or hot liquids, and exercise I'm a runner and this causes EXTREME 10/10 pain, and laying flat seems to trigger pain, so I have to go to bed about 2 hours before I really need to be asleep as it usually takes that long of crying and screaming in severe pain before it finally lets up......Well, I guess Im really just venting now.....Im very thankful that I have found this site its been very helpful to know Im not alone, my husband, children and friends are very supportive, but they really can't relate to me. I feel so bad that they are having to watch me suffer like this, it has totally debilitated me beyond recognition of who I am now. BTW I did try the tegretol, I could not stand the side effects.........I have NEVER know this level of pain, God be with us all!!!!! Hope to get some help when I see the Neuro MD
Truth be known no one who has not personally experienced the pain of TN can truly understand it. Unless you are an expert like Red of course.
You say you have tried Tegretol and struggled with the side effects. This as you will know is not uncommon. It can help with the s/e's to have a slow taper up. If that was followed and it was still awful take a look at the FACE PAIN INFO, it tells us there our medication options. Most of us find one or another that suits (ish).
The Neuro will, I hope, be helpful to you. Mine turned my life around with her understanding and medication plan.
Also with the Tegretol, I needed to be on it several months until I got sort of used to the side effects. At that point I decided I was still too foggy and tired to work so I switched to Trileptal which works much better but it took me 6 months to get used to it. I was terribly nauseated at first. And I went up on these both very slowly. So you may need to give the meds alot of time.....
Good Morning Kelso (do you live in Kelso,Wa ? pretty place !)
I ,too, am an RN, who has battled this BEAST for 3 years.
I have tried lots of drugs,both for the neuropathy of the cluster nerve pain (I had a MVND of 9th nerve in Sep 2011) and have chronic excruciating crushing pressure headpain/headaches. The MVND helped some-there were things they 'fixed' but I still have significant nerve pain as before. Still haven't found anything that works as a preventative that helps with this. But Indocin 100mg and Vistaril 50mg, Tordal 30-60mg IM injectable help take the edge off when it gets roaring over 8+
I have been on Zonegren 250mg qd for a month for the headache/pressure: added Diamox 250mg bid and I felt there was a BIG improvement with my head on that but as soon as I had a couple great days,the doc switched me to twice a week. BAM. Pressure pain back 8-10+.
Its a very frustrating diagnosis. There are so many variables, dependent on which nerve(s) are impacted and as with me, the pain went on so long, I developed chronic daily migraine and cluster headaches (all which are a huge challenge to manage).
My life has drastically changed. I used to be physically active-tri's,spin,weight lifting,powerwalking. Now if my heart rate gets up too high, it causes pressure on my surgical site and a strangulation effect on the artery =>increased pain because of the scar tissue (saw this from MRI/MRA). On the days I can "workout", I wear a heart rate monitor, and keep my HR 120-130max. Sometimes thats too much. I find that I never know when it will hit so I keep my calendar open and rarely schedule events (i have to work at this and not be gun shy, but its frustrating to keep crossing off events day after day because you are in too much pain to drive and function).
Enough of the doom and gloom.
From all this lousy hand I have been dealt, I have seen that I am strong. I can carry on and I will get through this, come hell or high water. My family is amazing , even after all this time and now when it has become a chronic problem. (hate that word!)
I have had 2 younger women referred to me from church who have TN that had no idea what to do. The 3 of us support each other daily via text,IM,fb. Little tips to get each other through the day.
This is Life. Its a Journey. We have no idea what is planned for us. But I do know that we are never given something that we can't handle. So be strong. You CAN do this. Its frustrating. You will have good days. You will have shitty days and rant and rave. Find someone to be your sounding board. This won't kill you (though you really wonder how it won't!!) And it COULD be worse. Hang in there!! These Blogs are a wealth of support and information. Keep us posted on how your appt goes with the Neuro.
Thanks so much for the support, I just don't think I can do does medications I cant function at all
Deej said:
Also with the Tegretol, I needed to be on it several months until I got sort of used to the side effects. At that point I decided I was still too foggy and tired to work so I switched to Trileptal which works much better but it took me 6 months to get used to it. I was terribly nauseated at first. And I went up on these both very slowly. So you may need to give the meds alot of time.....
First thing I would do is call primary and ask to have some lidocaine patches called in -- saved my life! works for 12 hours for many people!!!! There are other topicals, like from a compound pharm. such as ketamine + lidocaine - and many others. You can type topical in the search box above and you should get some other results too.
Tramadol of course is one of the "lighter" meds that can take some of the edge off --- though some people can take a ton of moraphine and it doesn't touch it! You should start some pain relief before friday!
Second, I would take a look at this link I posted - maybe copy and paste it for another day -- it has helped many.....
I know it is early in your journey - so be easy on yourself, ..........
let us know what happens with neuro --- the more aggressive you are with what you want and don't want - the better off you will be for self advocating -- if neuro does not have at least a handful of TN patients -- find another!
Thanks SO very much for the info!!!
We all feel like that in the early days. Unless you have taken the meds for longer than say 4 weeks and are still suffering i urge you to persist. Mostly we acclimate. It's meds or surgery for most, I am sorry to tell you. Complimentary meds only do a small amount for a few. if it helps you feel better, when I started on Teg, I walked like a wino, talked like a wino and looked like a wino for a few weeks.Then as i tapered up, and acclimated to the Teg, the pain went, the fog cleared a good bit and life became normalish. I am a functioning human being again.
It is so helpful to know there are other people like me, I so hate that you are suffering with this horrible THING, I am like you very active in my life, running, biking, speed walking, hiking, skiing water and snow.......Im so MAD!!!!!!! I'm over feeling sorry for myself now im just Pissed Off!!!!! And ready to move on and find the new normal. Thanks for all the info and you support. I will post after my Neuro visit
9thnerve said:
Good Morning Kelso (do you live in Kelso,Wa ? pretty place !)
I ,too, am an RN, who has battled this BEAST for 3 years.I have tried lots of drugs,both for the neuropathy of the cluster nerve pain (I had a MVND of 9th nerve in Sep 2011) and have chronic excruciating crushing pressure headpain/headaches. The MVND helped some-there were things they 'fixed' but I still have significant nerve pain as before. Still haven't found anything that works as a preventative that helps with this. But Indocin 100mg and Vistaril 50mg, Tordal 30-60mg IM injectable help take the edge off when it gets roaring over 8+
I have been on Zonegren 250mg qd for a month for the headache/pressure: added Diamox 250mg bid and I felt there was a BIG improvement with my head on that but as soon as I had a couple great days,the doc switched me to twice a week. BAM. Pressure pain back 8-10+.
Its a very frustrating diagnosis. There are so many variables, dependent on which nerve(s) are impacted and as with me, the pain went on so long, I developed chronic daily migraine and cluster headaches (all which are a huge challenge to manage).
My life has drastically changed. I used to be physically active-tri's,spin,weight lifting,powerwalking. Now if my heart rate gets up too high, it causes pressure on my surgical site and a strangulation effect on the artery =>increased pain because of the scar tissue (saw this from MRI/MRA). On the days I can "workout", I wear a heart rate monitor, and keep my HR 120-130max. Sometimes thats too much. I find that I never know when it will hit so I keep my calendar open and rarely schedule events (i have to work at this and not be gun shy, but its frustrating to keep crossing off events day after day because you are in too much pain to drive and function).
Enough of the doom and gloom.
From all this lousy hand I have been dealt, I have seen that I am strong. I can carry on and I will get through this, come hell or high water. My family is amazing , even after all this time and now when it has become a chronic problem. (hate that word!)
I have had 2 younger women referred to me from church who have TN that had no idea what to do. The 3 of us support each other daily via text,IM,fb. Little tips to get each other through the day.
This is Life. Its a Journey. We have no idea what is planned for us. But I do know that we are never given something that we can't handle. So be strong. You CAN do this. Its frustrating. You will have good days. You will have shitty days and rant and rave. Find someone to be your sounding board. This won't kill you (though you really wonder how it won't!!) And it COULD be worse. Hang in there!! These Blogs are a wealth of support and information. Keep us posted on how your appt goes with the Neuro.
It is ok to be MAD! :-) And it really is OK to feel sorry for yourself.
You have the right attitude! Not giving up is winning more than half the battle. Hugs!
Kelso said:
It is so helpful to know there are other people like me, I so hate that you are suffering with this horrible THING, I am like you very active in my life, running, biking, speed walking, hiking, skiing water and snow.......Im so MAD!!!!!!! I'm over feeling sorry for myself now im just Pissed Off!!!!! And ready to move on and find the new normal. Thanks for all the info and you support. I will post after my Neuro visit
9thnerve said:Good Morning Kelso (do you live in Kelso,Wa ? pretty place !)
I ,too, am an RN, who has battled this BEAST for 3 years.I have tried lots of drugs,both for the neuropathy of the cluster nerve pain (I had a MVND of 9th nerve in Sep 2011) and have chronic excruciating crushing pressure headpain/headaches. The MVND helped some-there were things they 'fixed' but I still have significant nerve pain as before. Still haven't found anything that works as a preventative that helps with this. But Indocin 100mg and Vistaril 50mg, Tordal 30-60mg IM injectable help take the edge off when it gets roaring over 8+
I have been on Zonegren 250mg qd for a month for the headache/pressure: added Diamox 250mg bid and I felt there was a BIG improvement with my head on that but as soon as I had a couple great days,the doc switched me to twice a week. BAM. Pressure pain back 8-10+.
Its a very frustrating diagnosis. There are so many variables, dependent on which nerve(s) are impacted and as with me, the pain went on so long, I developed chronic daily migraine and cluster headaches (all which are a huge challenge to manage).
My life has drastically changed. I used to be physically active-tri's,spin,weight lifting,powerwalking. Now if my heart rate gets up too high, it causes pressure on my surgical site and a strangulation effect on the artery =>increased pain because of the scar tissue (saw this from MRI/MRA). On the days I can "workout", I wear a heart rate monitor, and keep my HR 120-130max. Sometimes thats too much. I find that I never know when it will hit so I keep my calendar open and rarely schedule events (i have to work at this and not be gun shy, but its frustrating to keep crossing off events day after day because you are in too much pain to drive and function).
Enough of the doom and gloom.
From all this lousy hand I have been dealt, I have seen that I am strong. I can carry on and I will get through this, come hell or high water. My family is amazing , even after all this time and now when it has become a chronic problem. (hate that word!)
I have had 2 younger women referred to me from church who have TN that had no idea what to do. The 3 of us support each other daily via text,IM,fb. Little tips to get each other through the day.
This is Life. Its a Journey. We have no idea what is planned for us. But I do know that we are never given something that we can't handle. So be strong. You CAN do this. Its frustrating. You will have good days. You will have shitty days and rant and rave. Find someone to be your sounding board. This won't kill you (though you really wonder how it won't!!) And it COULD be worse. Hang in there!! These Blogs are a wealth of support and information. Keep us posted on how your appt goes with the Neuro.
i had a very similar situation with my teeth except the dentist told me it was a sinus infection which i knew it wasn't i had never had a sinus infection and i was in so much pain i knew a sinus infection couldn't put me in that much pain. good luck with the neuro keep us posted
My dentist said neurological pain , but after 2 trips to the emergency room and 3 different GP's they kept telling me it was sinus....I wish!!!!
Wendy "crashgirl"
jstagrl29 said:
i had a very similar situation with my teeth except the dentist told me it was a sinus infection which i knew it wasn't i had never had a sinus infection and i was in so much pain i knew a sinus infection couldn't put me in that much pain. good luck with the neuro keep us posted
Yeah!!!! I know how you fell I just wish it was a sinus infection or a dental issue......PLEASE!!!!
Maybe your neuro will give you something different, but if not, you REALLY need to take the tegretol. Some of the side effects subside over time. I am tired all the time and can't remember shit, but it's better than having that pain. Good luck!
I had a adverse reaction to the tegretol i felt like it made me worse i only took it for three days i really had some weird things happen while on it i had a surgery i had 9 yrs ago that i had nerves trying to reconnect they would shock me it went away after a week so strange the tegretol brought back the nerve pain i had 9 yrs ago not as bad but i found that soooo strange
I was on tegretol first, and developed leg pain that still lingers and am currently going through tests for it. The neurologist said that tegretol can make other neurological disorders worse or autoimmune disorders worse, so I feel that maybe that is what is happening to you. I do the opposite of whatever a drug is supposed to do. I took gabapentin once and could not stand up, I fell over 15 minutes after taking it, it was like I was on a binge drinking day!!
Wendy
jstagrl29 said:
I had a adverse reaction to the tegretol i felt like it made me worse i only took it for three days i really had some weird things happen while on it i had a surgery i had 9 yrs ago that i had nerves trying to reconnect they would shock me it went away after a week so strange the tegretol brought back the nerve pain i had 9 yrs ago not as bad but i found that soooo strange