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Old 01-13-2015, 02:58 PM #11
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Yes with TN I have good days and bad days. The pain could be in my left eye for five days and then on my right side tongue for one. I can have excruciating pain one day and ZERO pain the next. For me the pain comes on in "attacks" or "flair ups" with good days in between. I never know where or how badly it will strike.

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I also have a question, does any one have bad days and good days on the triliptical> Is it suppose to work all the time or does it not help at times. I have gone 1 and 1/2 days pain free and then whamo it will start up.
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Old 01-13-2015, 03:38 PM #12
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Yes with TN I have good days and bad days. The pain could be in my left eye for five days and then on my right side tongue for one. I can have excruciating pain one day and ZERO pain the next. For me the pain comes on in "attacks" or "flair ups" with good days in between. I never know where or how badly it will strike.
The worst is the burning, my tongue burns and my lips then the tooth starts throbbing. Then the pain will stop and I think oh maybe the medicine will work, then the next day it will start up. Yesterday I washed my face and touched the area where the problem was and was in pain all day. Then all of a sudden it stopped, today has not been to bad. I am grateful that there are people who understand. This is so new, I need to ask so many questions sometimes I feel like a moron, as I am trying to understand and make sense of it all. Thank you again.
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Old 01-13-2015, 07:25 PM #13
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Quote:
Originally Posted by MakenzieMarks View Post
I also have a question, does any one have bad days and good days on the triliptical> Is it suppose to work all the time or does it not help at times. I have gone 1 and 1/2 days pain free and then whamo it will start up.
Whatever drugs you are on the pain and numbness can overwhelm their effect and cause an attack, I'm afraid. With the doses of the meds I'm on I shouldn't feel anything ever, but the numbness is a nagging irritant, and going out in a breeze under about 45℉ or having to take my heart GTN spray guarantees the pain to sear through my face.
As to your next post, never put yourself down for asking questions, it is how you learn the truth from fellow sufferers.
Always make the most of your good periods and avoid triggers, bad days will come and go.

Dave.
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Old 01-14-2015, 04:18 AM #14
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Whatever drugs you are on the pain and numbness can overwhelm their effect and cause an attack, I'm afraid. With the doses of the meds I'm on I shouldn't feel anything ever, but the numbness is a nagging irritant, and going out in a breeze under about 45℉ or having to take my heart GTN spray guarantees the pain to sear through my face.
As to your next post, never put yourself down for asking questions, it is how you learn the truth from fellow sufferers.
Always make the most of your good periods and avoid triggers, bad days will come and go.

Dave.
It can be frustrating at times. I read that here in the US there are not that many sufferers and so not many alternatives to help, as not a lot of studies has been done on this condition, because there are many more like us but they do not know what the problem is and where to go for help. I was lucky in that I went to another dentist who said it was a nerve problem and then sent me to the pain management Doctor otherwise I would have suffered much longer than I did. It has made me humble as I know there are people who are in the same position as me, and some are far worse. I wish I could cast a magic spell and stop all the pain for all the ones who have this horrible condition. Much appreciate EnglishDave.
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Old 01-14-2015, 06:14 PM #15
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Before I joined this Forum I assumed almost everyone with TN had a condition like mine in the brain physically affecting the nerve. I had no idea the root cause (pun: if we don't laugh, we cry) for so many was dental issues.
That's what I enjoy about being here - along with the connections with other members - learning how you all come to be here, and trying in some small way to help.
I hope everyone is having a flare-free day.

Dave.
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Old 01-15-2015, 04:49 AM #16
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So far no pain. I have noticed when I wake up no pain then between the hours after I take my second dose of medicine at noon, I start experiencing the symptoms at full speed. They start to slow down around 4pm. I wish I knews why at that time it is so bad.
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Old 01-15-2015, 03:52 PM #17
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This "schedule" of pain is very common amongst us. I am exactly the same as you. Sleep seems to "reset" things thank goodness so I try to get as much as I can when I am not feeling well. I do not know the reasoning for pain being at its worse in the late afternoon/supper time either. I have had this for two years and that is one thing that has stayed the same.


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Originally Posted by MakenzieMarks View Post
So far no pain. I have noticed when I wake up no pain then between the hours after I take my second dose of medicine at noon, I start experiencing the symptoms at full speed. They start to slow down around 4pm. I wish I knews why at that time it is so bad.
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Old 01-15-2015, 06:17 PM #18
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Originally Posted by MakenzieMarks View Post
So far no pain. I have noticed when I wake up no pain then between the hours after I take my second dose of medicine at noon, I start experiencing the symptoms at full speed. They start to slow down around 4pm. I wish I knews why at that time it is so bad.
Could be something in your body's natural Circadian Rhythm, triggering extra sensitivity at that particular time of day. If you go to sleep again after your meds at noon does the pain follow the same 'flare-up' or is it reset? If it is the former it could well be sensitivity in your Rhythm, if the latter it's likely to be an outside stimulus.
Knowing which may not help physically, but can go some way to answering 'Why now?'

Dave.
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Old 01-16-2015, 10:00 AM #19
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Originally Posted by EnglishDave View Post
Could be something in your body's natural Circadian Rhythm, triggering extra sensitivity at that particular time of day. If you go to sleep again after your meds at noon does the pain follow the same 'flare-up' or is it reset? If it is the former it could well be sensitivity in your Rhythm, if the latter it's likely to be an outside stimulus.
Knowing which may not help physically, but can go some way to answering 'Why now?'

Dave.
I take my meds 6am 12 noon and then 6pm. Nothing too bad in the morning but afternoon it starts, and then stops around 4 pm. But today the burning and pain started after I took my meds at 6am. I can't win at all.
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Old 01-16-2015, 10:02 AM #20
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Originally Posted by justjane37 View Post
This "schedule" of pain is very common amongst us. I am exactly the same as you. Sleep seems to "reset" things thank goodness so I try to get as much as I can when I am not feeling well. I do not know the reasoning for pain being at its worse in the late afternoon/supper time either. I have had this for two years and that is one thing that has stayed the same.
It is as if the TN has a mind of it's own, constantly hiding and tricking me. I sometimes want to scream until I can't stop but the neighbors would freak. The only time I have relief is at night when I sleep and when I wake up ion the morning. That's about it. If I could have two days straight without any discomfort I would be happy.
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