I’m not on any tablets at the mo. I had an allergic reaction to one and they are concerned about others. Waiting for neurologist appointment and gp wants to see me on Thursday to see what I’ve been like all week. I’ve been keeping a diary.
Anyway, for me it’s a level 3 pain all the time. Then ups to 5 or 6 a few times a day. I’m getting the level 9 attacks roughly twice a day, sometimes more. Though today I decided to do nothing, just take the day to relax and catch up on emails, watch some tv and spend some relaxing time with my husband and I only had one attack of level 9 and that was just now. Maybe that has an affect? Anyway, just wondering.
As stress can be a factor in pain levels a relaxing day would maybe lead to a less painful day. My very worst pain has coincided with great stress. Without medication I felt like someone wired my gum line to the mains. It would make me drop to my knees if I could not sit down. If I was sitting it would jerk me up a couple of inches from my seat. I am told I would go white as the pain drained the blood from my face. I never saw this as to much pain to look. Luckily I am either well managed at present or in remission. I don’t care which, I am just happy to have it. The black dog hovers on my shoulders as I know it will not last forever ;(
First, I have ATN, which is primarily boring, intense, burning pain in my face. Sometimes I have the traditional electrical shocks but not always... so before my medication, I started out with attacks once a week. Then they increased until I was at one every day. About every 7 days I would have one where I wanted to die. 9 on the pain scale as described on pain comparison chart on this site. The pain would last for about 6 hours with the pain going from 7-9 until it went away... then I would have a day or so with no pain, then it would build so that there was a constant ache with pain at a 2 or 3, then the HUGE flare would insue.... it would be like that for ages.
Once my medication was being taken regularly, I would have pain that was breakthrough. These days I have constant level 2 pain.
I remember what the pain was like before I started on medication and I thought I had the worst brain tumor in the world and thought I had to be dying to be in that much pain. Describing this pain is so hard for all of us - sometimes, just because it keeps changing location, intensity and depth. Even on meds, I still have pain like Lisa - building, constant, related to stress level, and then the horrific days of terrible pain until my body can't endure anymore and it subsides on its own. I have tried to find the trigger for me and each time I think I have found it, it changes and I can't reproduce it. One time it will be wind, one time it will be vibration (riding in a car), then just taking a drink of pop will produce the bad, sharp pains. Can't figure it out and have pretty much quit trying.
I began with constant level 2 pain in tooth 8 months ago, this became level 3 and then the electric shocks began which were level 9. Shocks where I had to tense every muscle and bend over , athough only in my face, I remember my whole body having to cope. These came approx 3 times a day, each time after cycling. We were on holiday and I had to walk away from everyone whilst they happened as I did not want people or my husband to witness what was happening. I knew my face and body must have looked very strange. I felt like i was jerking when they happened. I told my neuro i thought it was because i was clenching my teeth whilst on the bike, he said it was the cold air. I still think it was the clenching. After visiting the dentist and having xrays taken which involved the tooth being poked and me clenching again the pain that night did not stop it came in continues waves and all i could do was sit up in bed and wait for the next one and the next one the night was continuess, once the night was over I got to the hospital and they gave me the TN medication and since then I have never had the level 9 pain again, although I do have level 1 or 2 on most days but after the other this i can cope with. I have been off work though and have relaxed every day I do hope that returning to work wont make this worse or the other attacks return.
My first episode was at dinner time. I felt the funny presence as I had several times before over 6 years (thought it was sinusitis) and I went to bite and chew and imediately felt this electrical stab in the roof of my mouth and realized it wasen't going away and I spit the food out and ran to my bedroom wanting to grasp my head. I thought I was going to die and I layed on the bed and I know I sacred my husband to death. I thought it was an anurism and my daughtrer started to take me to the hospital and after 1 1/2 hours it went away. I slept so good. Then I went to church next day and I turned my head to look right and it hit me on the right side of face and I went running out of church and came to top of stairs and couldn.t make it down. My husband walked out and put me in the car. So painful I had to shield my face from light and everything. It lasted 1 hr and 40 minutwes. I had pre-op at hospital for sinuplasty and I had 7 attacks. My jaw hurt all day. It hurt so bad to talk and no eating. Mostly 8-9 on pain scale during attacks otherwise 1 -4 I have always slept real good.