I was just curious how often do you deal with TN pain daily. How much break through pain pain do you have daily? Lastly how often do you have crazy not going away pain that kicks your asterisk? Really I’m curious since we’re all so different. The other reason is I’m having a horrible time with break thru pain lately, which scares me to think I’m very close to another kick my booty cycle time of pain again. Right now I’m having break through pain every couple of hours. Do I need to have my medication up’d or do I need to just get use to it (which really would suck). Also, I’m just plain curious on this. Thanks
That was the point that I got RX lidocaine patches --- while going up or down on my med
OR during stressful times -- it soothed my nerves and soul!!!
I had side effects on the first two anti seizure drugs but now I am on Amitriptyline for almost two years. I had 24/7 pain from Dec to March. Mostly my TN pain is at night for some reason. I always wanted to know why it wakes you up. For awhile I hated to even try to lay down. On the day to day I feel my Cluster Headaches which grips my brain on and off all day which feels like muscle cramps in my brain. The TN triggers the CH and vise verse.
I have type 1 TN and can go a couple weeks painfree. But then one day I was having a "zing" every half hour. I was afraid it was a precursor to a BIG ONE, but it never happened. Then one morning about 4:am, I sat on the edge of the bed, drank some water from a glass, and I had a bad event that lasted 20 seconds. That may sound pretty trivial to some. I know it is different for all of us. What does you doctor have to say about your break through pain? I see that your posting was made at 2:17 am. Do you get any restful sleep?
Thanks y’all. I’m just beyond tired of this battle, and you guys are too I’m sure. I finally broken down and spoken with the nurse on what I should do for break through pain like this. The answer was I have to wait for my appointment on Monday. I just want to eat and sleep along with be able to talk and interact with people. The pain has been acting like a freight train that is just about to lose control. If I can just keep it on the tracks long enough for the weekend that would be great.
You will keep on the tracks, Kari, I know it. You hang in there. If you have a real crisis, go to the emergency room. I hope I am telling you the best thing to do, I don't know. Maybe others with more experience will have some ideas for you. I'm glad you called the Doctor's office.
Hang in there Kari. I agree with Dixie that if it becomes unbearable to go to the ER. That is where I landed when my symptoms first started 4 months ago. Fortunately they immediately knew what it was based on my specific symptoms and the locations in my forehead and put me in la-la land until the gabapentin/neurontin started to kick in. As you know, it is not only extremely painful...but emotionally painful as you feel so helpless.
The concept of "breakthrough pain"is new to me. I don't experience any low-grade pain on a regular basis that is followed by something more severe. I either have no pain at all or I have sudden, extruciatingly painful stabbling pains that last about 1/2 second each. I call it "stab and gone" pain. I may have days where I have 100 and days where I have 500. Of the 100, maybe 25 will be pain-level 10's (I call them "knee benders") and the rest may pain level 4-8's where only I know that I am having them. On the 4th of July when other people were watching fireworks bursting in air, I was having about 150 explosions bursting in my forehead throughout the day. Really sucks.
Good luck with your progress on pain control. Push your neurologist hard. We all have to be our own advocate!!!
BRAD--I have type 1 TN and have either no pain at all or the sudden electrical jolts down my face that I call "zings". I usually let out a reflexive sound--"Ohhhhh" when one hits & grab the bathroom sink or where ever I may be. Most last only one second. One day I had zings every half hour and I was so afraid a BIG ONE was coming, but it didn't that day. Currently I have had no bad events. The last one was May 20 and it lasted about 20 seconds, which is the worst I have ever had. My emotional reaction following it was great fear, anxiousness, shivering, feeling very cold and I shuddered and shivered for quite sometime until I could fall asleep. It occurred at 4 A.M. DAMN THIS THING!!
Hi Dixie. I have never had a stabbing electrical pain for more than 1/2 to 1 second. I think if I ever had one for even 5 seconds I would probably fall to the floor and curl up into the fetal position, especially when they are a "10" even on the medications. Just curious, how often do you get them? Sometimes mine are clustered where I will get one every 3-5 seconds for a couple of minutes, sometimes a couple a minute for 10 minutes, sometimes just hundreds scattered throughout the day. And some days I will have none whatsoever, maybe even for 3-5 days. But of course the side effects never go away. Mine jolts are only in the peripheral branches in my forehead. Sometimes I get a warning sensation for maybe 5 minutes or so like an energy field is starting to build in my forehead, and then BAM, I'll get a bunch of stabbing pais. Do you esperience anything similar?
Dixie said:
BRAD--I have type 1 TN and have either no pain at all or the sudden electrical jolts down my face that I call "zings". I usually let out a reflexive sound--"Ohhhhh" when one hits & grab the bathroom sink or where ever I may be. Most last only one second. One day I had zings every half hour and I was so afraid a BIG ONE was coming, but it didn't that day. Currently I have had no bad events. The last one was May 20 and it lasted about 20 seconds, which is the worst I have ever had. My emotional reaction following it was great fear, anxiousness, shivering, feeling very cold and I shuddered and shivered for quite sometime until I could fall asleep. It occurred at 4 A.M. DAMN THIS THING!!
I have had only 2 HORRIBLE ones the past 10 months, the last one being the 4:00am attack that lasted about 20 seconds. During the episode I was sitting on the bed with my hand near my head and could only cry out with, "Oh, oh, oh", every time one hit, which was ongoing one after the other with no let up. I would have fallen on the floor had I not been sitting on the floor. My significant other stood by me helpless not knowing what to do. I didn't want him to touch me-I just couldn't do anything. I can't imagine how some members on this site endure frequent events. I have them erratically. Sometimes I will go a couple weeks with nothing and then suddenly one morning I may touch my eyebrow as I am washing my face and I will get a jolt down my face--lasting no more than a second. My Lyrica has been increased from 150 mg daily to 300 mg daily. I have been on 300mg. only 4 days, now. I was disappointed when I had 2 zings yesterday. I was hoping the increased dosage would keep me completely pain free. Maybe it has not reached the peak level in my body, yet. As far as getting a warning--not really, except when I am going through a day of having multiple zings. I have a feeling that certain areas of my face are super sensitive and that the nerve is highly excitable & that it is ready to fire off a zing if I touch a certain area. Does that make sense?
Brad said:
Hi Dixie. I have never had a stabbing electrical pain for more than 1/2 to 1 second. I think if I ever had one for even 5 seconds I would probably fall to the floor and curl up into the fetal position, especially when they are a "10" even on the medications. Just curious, how often do you get them? Sometimes mine are clustered where I will get one every 3-5 seconds for a couple of minutes, sometimes a couple a minute for 10 minutes, sometimes just hundreds scattered throughout the day. And some days I will have none whatsoever, maybe even for 3-5 days. But of course the side effects never go away. Mine jolts are only in the peripheral branches in my forehead. Sometimes I get a warning sensation for maybe 5 minutes or so like an energy field is starting to build in my forehead, and then BAM, I'll get a bunch of stabbing pais. Do you esperience anything similar?
Dixie said:BRAD--I have type 1 TN and have either no pain at all or the sudden electrical jolts down my face that I call "zings". I usually let out a reflexive sound--"Ohhhhh" when one hits & grab the bathroom sink or where ever I may be. Most last only one second. One day I had zings every half hour and I was so afraid a BIG ONE was coming, but it didn't that day. Currently I have had no bad events. The last one was May 20 and it lasted about 20 seconds, which is the worst I have ever had. My emotional reaction following it was great fear, anxiousness, shivering, feeling very cold and I shuddered and shivered for quite sometime until I could fall asleep. It occurred at 4 A.M. DAMN THIS THING!!
I dont have the horrible lightning strikes much at all, but my ear feels like it has an ice pick in it for at least 8 hrs a day, I am beyond myself with the pain. I am looking into other options for meds since the Lyrica isnt doing the trick and I feel stupid every day
Wendy
By the time I reached the time of my MVD (in late May of this year), I had regressed to the point where extreme burning pain was a 100% constant at all times, zings or lightning bolts occurred at least a half dozen times a day, usually in the late evening, and all of it would culminate in a crushing, overwhelming feeling that the right side of my head was going to explode (don't know how to explain it better than that).
For me it progressed always, and I had to scale up my tegretol to match the progression. Ultimately I made the doc's cut my tegretol in half (in a wean down process), because I got to the point where I was non-functional, and I have two small children and can't miss work. That's when it got to the bad level described above.
Now I'm nearly 6 weeks post op and it seems to be reversing (keeping my fingers crossed that this trend continues). Still on the same dose of tegretol I was at the point of the MVD, so we'll see. At least I don't legitimately consider throwing myself down flights of stairs any longer (I wish I was kidding ...).