I don't mean to be presumptuous, but since I have had only a few major occurrences of TN accompanied by ongoing, dull constant discomfort for several years, I am wondering if yesterday's lack of major spasms (only two) is an indication that the latest may be short-lived. Again, I have little experience and am still learning and researching. So, any thoughts? Is it dying down or hibernating for now? Ironically as I type this, I feel a spasm building in my face. Spoke too soon? Gosh, I don't know. I guess what I should get used to is the unpredictability. Yesterday was a day of rest and little stress; I did some grocery shopping, spent time with my husband and sons, did some homework, and had few if any commitments or time constraints. I'm sure that influences the TN's activity. This spasm building now, the one that is forcing me to slow my typing and breathe deeply, does not indicate things are over. I'm wondering if I should even post this except that maybe someone else has the same question or has experienced a good day or brief period only to be surprised again. I feel safer emotionally when I know what to expect and experience. I realize this tends to be progressive, and I realize fully what that means. Hope this helps someone...hope others have thoughts or suggestions or feedback...hugs to you all...
Amy,
I've had the same experience. I've been typing that I was having a pain free day, then out of the blue, here it comes. I just wanted to give you a shout out and let you know I have experienced the same thing.
This site is here to help you feel safer emotionally, to know you are not alone. I wish I had my hands on the prescription pad which could bring you the solid relief you need. However, some doc does. All I can do is tell you that we are here for you, your rants, questions (the ones we can answer), and even the anger that you feel about your pain.
I hope you feel better today and are able to spend more pain free, stress free time to enjoy your weekend. Stress does bring on attacks. I don't think that thinking about them does, though. Example: Once I was in Walgreens, thinking about which Deodorant to choose for my daughter . . .and here came the attack. I wasn't dwelling, I was shopping.
I am ATN. I cannot remember if you are or not, I will have to refresh my memory by looking at your page.
I enjoy replying to people with my condition. It is a sort of therapy for me in itself. You see, I used to be in an office setting, and can type much faster than I talk. I miss giving advice and knowing what I am talking about. I miss submitting things for approval. I miss the creative writing aspect of my career. If I am wordy, that is why.
Amy, I don't have any good advice for you, except for that I hope you find a good regimen for what sounds like chronic pain (I hope not, but it may be).
Myself, I require opiates and anti-convulsants for relief, more specifically Oxycodone and Neurontin. But, still under-medicated, I cannot return to work. I need a longer acting pain med.
Yes, your post helped me not to feel so alone.
Hugs,
Stef
I do have ATN…and I have been taking Topamax…the fog it leaves me in is so frustrating…they want to up my dosage b/c the pain remains. The opiates leave me less concerned but still feeling every twinge. I understand you missing the interaction. I still work, and work on my degree online as well. Thanks for your response. I need the interaction. I worry about asking the same questions for the 900th time or whatever, too. I did a search but did not see any recent posts with similar content. I’ve had two spasms since I posted that. Still, compared to last week, it is less. I swear, I don’t have faith in any of the meds. I think it will take my energy and time as long as it wants to and then go when it’s ready and return again when it’s ready, almost as if it’s a being of its own. What a happy thought, right? Sorry…ha…call me Miss Sunshine…
Stef said:
Amy,
I've had the same experience. I've been typing that I was having a pain free day, then out of the blue, here it comes. I just wanted to give you a shout out and let you know I have experienced the same thing.
This site is here to help you feel safer emotionally, to know you are not alone. I wish I had my hands on the prescription pad which could bring you the solid relief you need. However, some doc does. All I can do is tell you that we are here for you, your rants, questions (the ones we can answer), and even the anger that you feel about your pain.
I hope you feel better today and are able to spend more pain free, stress free time to enjoy your weekend. Stress does bring on attacks. I don't think that thinking about them does, though. Example: Once I was in Walgreens, thinking about which Deodorant to choose for my daughter . . .and here came the attack. I wasn't dwelling, I was shopping.
I am ATN. I cannot remember if you are or not, I will have to refresh my memory by looking at your page.
I enjoy replying to people with my condition. It is a sort of therapy for me in itself. You see, I used to be in an office setting, and can type much faster than I talk. I miss giving advice and knowing what I am talking about. I miss submitting things for approval. I miss the creative writing aspect of my career. If I am wordy, that is why.
Amy, I don't have any good advice for you, except for that I hope you find a good regimen for what sounds like chronic pain (I hope not, but it may be).
Myself, I require opiates and anti-convulsants for relief, more specifically Oxycodone and Neurontin. But, still under-medicated, I cannot return to work. I need a longer acting pain med.
Yes, your post helped me not to feel so alone.
Hugs,
Stef
Oh, Mrs. Sunshine, it sounds as if you are a writer, like me. I have never tried Topamax. After reading that it really does nothing, and you pain sounds vaguely like mine, I don't think I shall. And yes, creatively spoken, it does feel like a creature that can attack you and drain your energy. I don't feel a fog from my meds, as much as sleepiness. I do not feel loopy, or anything. But then again, I am extremely Benzo and Opiate tolerant by now, and probably also tolerant mostly to anti-convulsants. But, the combination of a benzo, an opiate, an anti-depressant and an opiate do arm me with some control over this beast. In fact, I can take them now. It is time! Whew, I made it. The burning in face and teeth was soooo bad.
I congratulate you on going for a 2ND MASTERS DEGREE!!!! I cannot express to you the empathy I feel for you, and I encourage you to keep fighting this monster and grab your brass ring. I hope you get some rest and feel better. I encourage you to join our ATN group, I may have told you this, but it is under the "MORE" tab, and then click "GROUPS". Look for the painting, "The Scream" as you scroll through the groups, or go to my page and click on it under my groups to join. There is great information there that was just posted by Gloria by way of Red regarding Nerve Blocks. One of our members just underwent MVD, so we are following his progress.
I feel down myself right now. I just wanted you to know, Amy, that you are not alone, and to take heart, I know of more than one person who has found the combination of treatments that sustains them. Actually, to quote one of my Facebook friends, "Lyrica and Morphine are my miracle. I hope you find yours". . . .and that is how I feel about you, even though I am still looking for my miracle too.
Hugs,
Stef
Amy said:
I do have ATN...and I have been taking Topamax...the fog it leaves me in is so frustrating...they want to up my dosage b/c the pain remains. The opiates leave me less concerned but still feeling every twinge. I understand you missing the interaction. I still work, and work on my degree online as well. Thanks for your response. I need the interaction. I worry about asking the same questions for the 900th time or whatever, too. I did a search but did not see any recent posts with similar content. I've had two spasms since I posted that. Still, compared to last week, it is less. I swear, I don't have faith in any of the meds. I think it will take my energy and time as long as it wants to and then go when it's ready and return again when it's ready, almost as if it's a being of its own. What a happy thought, right? Sorry...ha...call me Miss Sunshine...:)
Stef said:Amy,
I've had the same experience. I've been typing that I was having a pain free day, then out of the blue, here it comes. I just wanted to give you a shout out and let you know I have experienced the same thing.
This site is here to help you feel safer emotionally, to know you are not alone. I wish I had my hands on the prescription pad which could bring you the solid relief you need. However, some doc does. All I can do is tell you that we are here for you, your rants, questions (the ones we can answer), and even the anger that you feel about your pain.
I hope you feel better today and are able to spend more pain free, stress free time to enjoy your weekend. Stress does bring on attacks. I don't think that thinking about them does, though. Example: Once I was in Walgreens, thinking about which Deodorant to choose for my daughter . . .and here came the attack. I wasn't dwelling, I was shopping.
I am ATN. I cannot remember if you are or not, I will have to refresh my memory by looking at your page.
I enjoy replying to people with my condition. It is a sort of therapy for me in itself. You see, I used to be in an office setting, and can type much faster than I talk. I miss giving advice and knowing what I am talking about. I miss submitting things for approval. I miss the creative writing aspect of my career. If I am wordy, that is why.
Amy, I don't have any good advice for you, except for that I hope you find a good regimen for what sounds like chronic pain (I hope not, but it may be).
Myself, I require opiates and anti-convulsants for relief, more specifically Oxycodone and Neurontin. But, still under-medicated, I cannot return to work. I need a longer acting pain med.
Yes, your post helped me not to feel so alone.
Hugs,
Stef
You’re sweet…I just joined…hopefully we can help each other as a group…I am a writer…I am forced to write for school right now but have written creatively since grade school. There is not much I won’t write about, or be sarcastic about, so consider yourself warned…and thank you…
Stef said:
Oh, Mrs. Sunshine, it sounds as if you are a writer, like me. I have never tried Topamax. After reading that it really does nothing, and you pain sounds vaguely like mine, I don't think I shall. And yes, creatively spoken, it does feel like a creature that can attack you and drain your energy. I don't feel a fog from my meds, as much as sleepiness. I do not feel loopy, or anything. But then again, I am extremely Benzo and Opiate tolerant by now, and probably also tolerant mostly to anti-convulsants. But, the combination of a benzo, an opiate, an anti-depressant and an opiate do arm me with some control over this beast. In fact, I can take them now. It is time! Whew, I made it. The burning in face and teeth was soooo bad.
I congratulate you on going for a 2ND MASTERS DEGREE!!!! I cannot express to you the empathy I feel for you, and I encourage you to keep fighting this monster and grab your brass ring. I hope you get some rest and feel better. I encourage you to join our ATN group, I may have told you this, but it is under the "MORE" tab, and then click "GROUPS". Look for the painting, "The Scream" as you scroll through the groups, or go to my page and click on it under my groups to join. There is great information there that was just posted by Gloria by way of Red regarding Nerve Blocks. One of our members just underwent MVD, so we are following his progress.
I feel down myself right now. I just wanted you to know, Amy, that you are not alone, and to take heart, I know of more than one person who has found the combination of treatments that sustains them. Actually, to quote one of my Facebook friends, "Lyrica and Morphine are my miracle. I hope you find yours". . . .and that is how I feel about you, even though I am still looking for my miracle too.
Hugs,
Stef
Amy said:I do have ATN...and I have been taking Topamax...the fog it leaves me in is so frustrating...they want to up my dosage b/c the pain remains. The opiates leave me less concerned but still feeling every twinge. I understand you missing the interaction. I still work, and work on my degree online as well. Thanks for your response. I need the interaction. I worry about asking the same questions for the 900th time or whatever, too. I did a search but did not see any recent posts with similar content. I've had two spasms since I posted that. Still, compared to last week, it is less. I swear, I don't have faith in any of the meds. I think it will take my energy and time as long as it wants to and then go when it's ready and return again when it's ready, almost as if it's a being of its own. What a happy thought, right? Sorry...ha...call me Miss Sunshine...:)
Stef said:Amy,
I've had the same experience. I've been typing that I was having a pain free day, then out of the blue, here it comes. I just wanted to give you a shout out and let you know I have experienced the same thing.
This site is here to help you feel safer emotionally, to know you are not alone. I wish I had my hands on the prescription pad which could bring you the solid relief you need. However, some doc does. All I can do is tell you that we are here for you, your rants, questions (the ones we can answer), and even the anger that you feel about your pain.
I hope you feel better today and are able to spend more pain free, stress free time to enjoy your weekend. Stress does bring on attacks. I don't think that thinking about them does, though. Example: Once I was in Walgreens, thinking about which Deodorant to choose for my daughter . . .and here came the attack. I wasn't dwelling, I was shopping.
I am ATN. I cannot remember if you are or not, I will have to refresh my memory by looking at your page.
I enjoy replying to people with my condition. It is a sort of therapy for me in itself. You see, I used to be in an office setting, and can type much faster than I talk. I miss giving advice and knowing what I am talking about. I miss submitting things for approval. I miss the creative writing aspect of my career. If I am wordy, that is why.
Amy, I don't have any good advice for you, except for that I hope you find a good regimen for what sounds like chronic pain (I hope not, but it may be).
Myself, I require opiates and anti-convulsants for relief, more specifically Oxycodone and Neurontin. But, still under-medicated, I cannot return to work. I need a longer acting pain med.
Yes, your post helped me not to feel so alone.
Hugs,
Stef
Thanks for joining . . .and yeah, I have been creatively writing since grade school as well. Sarcasm? Totally encouraged. It's the basis for most comedy and we all could use a little of that with what we are going through. Hope to talk to you later. My fiance's friends just showed up. I have been procrastinating getting ready to meet them, because my pills haven't kicked in and typing is all I'm capable of at the moment . . . .hope that creature leaves you alone as much as possible for the day. Talking to other people who suffer with this has almost become a creative outlet for me. I used to write poetry, not I am thoroughly uninspired . . . . . yes, the Type I sufferers have MVD and gamma knife and other types of help available. I'm ready to talk about solutions for us Atypical people. I look forward to talking with you later! Ughhh. . . have to go get ready. Bye for now!
Amy said:
You're sweet...I just joined...hopefully we can help each other as a group...I am a writer...I am forced to write for school right now but have written creatively since grade school. There is not much I won't write about, or be sarcastic about, so consider yourself warned...and thank you...;)
Stef said:Oh, Mrs. Sunshine, it sounds as if you are a writer, like me. I have never tried Topamax. After reading that it really does nothing, and you pain sounds vaguely like mine, I don't think I shall. And yes, creatively spoken, it does feel like a creature that can attack you and drain your energy. I don't feel a fog from my meds, as much as sleepiness. I do not feel loopy, or anything. But then again, I am extremely Benzo and Opiate tolerant by now, and probably also tolerant mostly to anti-convulsants. But, the combination of a benzo, an opiate, an anti-depressant and an opiate do arm me with some control over this beast. In fact, I can take them now. It is time! Whew, I made it. The burning in face and teeth was soooo bad.
I congratulate you on going for a 2ND MASTERS DEGREE!!!! I cannot express to you the empathy I feel for you, and I encourage you to keep fighting this monster and grab your brass ring. I hope you get some rest and feel better. I encourage you to join our ATN group, I may have told you this, but it is under the "MORE" tab, and then click "GROUPS". Look for the painting, "The Scream" as you scroll through the groups, or go to my page and click on it under my groups to join. There is great information there that was just posted by Gloria by way of Red regarding Nerve Blocks. One of our members just underwent MVD, so we are following his progress.
I feel down myself right now. I just wanted you to know, Amy, that you are not alone, and to take heart, I know of more than one person who has found the combination of treatments that sustains them. Actually, to quote one of my Facebook friends, "Lyrica and Morphine are my miracle. I hope you find yours". . . .and that is how I feel about you, even though I am still looking for my miracle too.
Hugs,
Stef
Amy said:I do have ATN...and I have been taking Topamax...the fog it leaves me in is so frustrating...they want to up my dosage b/c the pain remains. The opiates leave me less concerned but still feeling every twinge. I understand you missing the interaction. I still work, and work on my degree online as well. Thanks for your response. I need the interaction. I worry about asking the same questions for the 900th time or whatever, too. I did a search but did not see any recent posts with similar content. I've had two spasms since I posted that. Still, compared to last week, it is less. I swear, I don't have faith in any of the meds. I think it will take my energy and time as long as it wants to and then go when it's ready and return again when it's ready, almost as if it's a being of its own. What a happy thought, right? Sorry...ha...call me Miss Sunshine...:)
Stef said:Amy,
I've had the same experience. I've been typing that I was having a pain free day, then out of the blue, here it comes. I just wanted to give you a shout out and let you know I have experienced the same thing.
This site is here to help you feel safer emotionally, to know you are not alone. I wish I had my hands on the prescription pad which could bring you the solid relief you need. However, some doc does. All I can do is tell you that we are here for you, your rants, questions (the ones we can answer), and even the anger that you feel about your pain.
I hope you feel better today and are able to spend more pain free, stress free time to enjoy your weekend. Stress does bring on attacks. I don't think that thinking about them does, though. Example: Once I was in Walgreens, thinking about which Deodorant to choose for my daughter . . .and here came the attack. I wasn't dwelling, I was shopping.
I am ATN. I cannot remember if you are or not, I will have to refresh my memory by looking at your page.
I enjoy replying to people with my condition. It is a sort of therapy for me in itself. You see, I used to be in an office setting, and can type much faster than I talk. I miss giving advice and knowing what I am talking about. I miss submitting things for approval. I miss the creative writing aspect of my career. If I am wordy, that is why.
Amy, I don't have any good advice for you, except for that I hope you find a good regimen for what sounds like chronic pain (I hope not, but it may be).
Myself, I require opiates and anti-convulsants for relief, more specifically Oxycodone and Neurontin. But, still under-medicated, I cannot return to work. I need a longer acting pain med.
Yes, your post helped me not to feel so alone.
Hugs,
Stef