Tonight I’m sitting outside, it freezing in my part of Florida. Anywho, the rumblings or peelers as I am starting to call them are trying to make their appearance known. PLEASE, someone tell me it’s just my imagination :(. How often does TN 1 become Atypical? Or is that the one when the pain is constant? There is one for both sides though. Not at same time and that would be me. Rrrrgggh
Dear Phoebe,
It's not your imagination. I started out as Type I and then Type II began and finally Type II popped up on both sides (bilateral). There are other members here who have had this happen. You're not going crazy. It just seems to be part of the progression of the condition.
Try not to freak out about it because that can cause pain flares. I know it's alarming, but it's not life threatening. I've been able to stay out of the emergency room for about six months now and that's a major achievement. In addition to Type I and bilateral Type II, I have four other chronic pain conditions, but I remind myself that it could be worse.
We're here for you and encorage you to vent!!!
Mine started out as more TN1..... however, it is now definitely Atypical. No question about it at all. I still get the electrical shocks, but now I get constant, searing pain as well. I really don't know how to describe the pain really. Some people say it is burning pain. For me, it's not burning. It's kind of like the worst pressure on your face ever. Like a bat hitting it over and over -- so pressure than sting, pressure than sting......
I think when we are newly diagnosed, things morph and keep morphing.
Wish I could tell you that TN pain just sticks to one side at a time, but I've got it on both sides and they flare at the same time. I know how you feel....TN is so rare and to have it on both sides at the same time is even more rare. Hang in there. You're not alone.
~ Vicki
I have the same thing happening to me and it is so frustrating. My pain has moved into my neck and shoulders (mostly the right side) and I was thinking this morning that there must be something wrong with my neck now. At times, I can hardly move my head. I also have pain on the right side of my head, like a trauma pain. It feels so deep, like my skull is crushing in on itself. I have the same really hard time trying to describe the pain to my doctors because it keeps changing on me. I also have alot of depression - don't know if it is from the Lyrica or just being tired of pain. It seeems this is the only place that I can vent all this. I can't even talk about this with family anymore. Then, I have days of almost no pain and I think maybe I am in remission. However, the pain always seems to come back.
D I went through a period of about 6 weeks of sever neck accompanied by back of head pain. The only relief i could get was to lie flat and rest. Travelling in a car as a passenger was dreadful. Thankfully it passed. I mentioned it to my Neuro and he said he thought they were migraine attacks as these can come on with neck pain. How are you getting on with the benfotiamine D are you still taking it?
I'm on both sides, though the right is still my biggest culprit. I mean, I cover more area of "ow-ness" on my right. My left is more localized to just my eye, ear, and cheekbone. I'm sorry yours morphed. I realize from hearing what everyone is saying that I am lucky I have not had to visit the ER like some of you...well, not since my Lyrica, anyway.
Elstep
So far, the B1 - fat soluble does not seem to help with the pain, but it does help with sleep for some odd reason. I am still taking it, but went to every other night as I thought I may be experiencing stomach problems from my body trying to metabolize it. I also cut back from 2 Lyrica per day to 1 as I was pretty sure the depression was worsening for me. I am so sensitive to everything! I can barely take a multivitamin without some kind of reaction. I see my neurosurgeon (supposed to be a TN specialist) next week and will ask him about trying a tricyclic antidepressant with the Lyrica. Thanks for asking. Didn't realize you remembered me. Do you think I should tell the neuro about the severe neck and shoulder pain? I have had this pain off and on for a couple of months now and seems to just keep getting worse. I think it is stress related or job related since I work at a computer all day, but like the TN pain, it is inconsistant and seemingly without a pattern. The massage therapy I have tried does help, but haven't been back to them for a couple of weeks.
elstep said:
D I went through a period of about 6 weeks of sever neck accompanied by back of head pain. The only relief i could get was to lie flat and rest. Travelling in a car as a passenger was dreadful. Thankfully it passed. I mentioned it to my Neuro and he said he thought they were migraine attacks as these can come on with neck pain. How are you getting on with the benfotiamine D are you still taking it?
Just thought of something. I have had this very strange pain in my right leg for months. (Not the subcutaneous neuropathy pain I was treated for last January.) I have asked the neurologist about it twice and he always glosses over it. I don't like that. I WANT to know why I have the pain in my leg. Yes, it is worse when I press on my leg, so the obvious answer is don't press on your leg. But I know it is there, I feel it all day. And if I bump into something it hurts extra. This is also the side that I had the weird pain hypersensitivity in my hip/waist area while receiving chiropractic treatment.
Although the neurologist does not find this important I wonder what you all think?
Regards,
Phoebe
Hi D, yes do tell your Neuro. I intended not to mention mine as i was no longer suffering, but it all came out in the wash. My neck pain did have a pattern thought, it came on with tiredness (when i was still at work) and if i got stressed.
I found Amitriptylinep for sleep and it helped me wear glasses again. Will you ask him his thoughts on the B1? How lucky that he is a TN specialist. Good Luck with the appointment.
grrrrrr i compleletly understand. somehow it starts in my face and rides down my nerves me entire left body is affected...now its going into my right.....my neurologist says...oh just go back to work, you will feel better. i am a registered nurse...i CANNOT continue to work like this throwing up vertigo pain attacks...i only work night shifts and hospitals are cold......grrrrrrrrrr yes i feel u....i lost two marriages over this and a girlfriend and facing homelessness again. after making it a point for my family and friends to see that im not lying about this, my dedicated my facebook page in teaching about this disorder,,,now is this a disorder or a disease...doe it run in families? has any other woman have thrombophilia on top of this and/or lost a pregnancy? i had a stillborn perfectly healthy during the time of my pain attacks...does anyone now if there is a connection. i dont know my birth history. i thank god ive been blessed as a nurse....to nurse myself back to health. my mental status is way out, im angry snappy short tempored cant get pain management suicidal seizues petit mals and localized and jacksonian.....i called the laser med center they r willing to help me but i have more than just atn.......im so medically unstable i cant even admit myself vontarily in psychiatric care...nothing but depression.....my exwife sent me to narcotics anonymous for pain management so i went a good 5 years without being treated....now im afraid ive screwed my entire body up. any suggestions? i even have department od social services on my back. between suicide begging god to take me and passibg out in attacks or seizures.......i dont know what to do. id love for this to be my imagination....but its not. i love u guys....any suggestions id appeciate it.
Lisa (iamrite) said:
Mine started out as more TN1..... however, it is now definitely Atypical. No question about it at all. I still get the electrical shocks, but now I get constant, searing pain as well. I really don't know how to describe the pain really. Some people say it is burning pain. For me, it's not burning. It's kind of like the worst pressure on your face ever. Like a bat hitting it over and over -- so pressure than sting, pressure than sting......
mine feel like icepics burning sizzling....mine also ride down the entire left hemisphere of my body. now my right face is and body is doing it....
"I think when we are newly diagnosed, things morph and keep morphing. " mine too...thats why they think i have conversion disorder.......i probably do now by now since i still cant get proper help.
grrrrrr i compleletly understand. somehow it starts in my face and rides down my nerves me entire left body is affected...now its going into my right.....my neurologist says...oh just go back to work, you will feel better. i am a registered nurse...i CANNOT continue to work like this throwing up vertigo pain attacks...i only work night shifts and hospitals are cold......grrrrrrrrrr yes i feel u....i lost two marriages over this and a girlfriend and facing homelessness again. after making it a point for my family and friends to see that im not lying about this, my dedicated my facebook page in teaching about this disorder,,,now is this a disorder or a disease...doe it run in families? has any other woman have thrombophilia on top of this and/or lost a pregnancy? i had a stillborn perfectly healthy during the time of my pain attacks...does anyone now if there is a connection. i dont know my birth history. i thank god ive been blessed as a nurse....to nurse myself back to health. my mental status is way out, im angry snappy short tempored cant get pain management suicidal seizues petit mals and localized and jacksonian.....im so medically unstable i cant even admit myself vontarily in psychiatric care...nothing but depression.....my exwife sent me to narcotics anonymous for pain management so i went a good 5 years without being treated....now im afraid ive screwed my entire body up. any suggestions? i even have department od social services on my back. between suicide begging god to take me and passibg out in attacks or seizures.......i dont know what to do. id love for this to be my imagination....but its not. i love u guys....any suggestions id appeciate it. as im learning from u guys im also teaching it...is there any at home jobs i can do with this disorder? and still be reliable before they come take my kids away from me....its been over a year and i still havent gotten proper treatment...but side effects of meds are killing my liver and kidneys........i am venting trust me and it sure does feel good........yes VENT.....thats all i can do...vent cry pray sieze pain attack migraine attack..................huggs and kissez! i made it another year...32 now! no suicide...i contract for safety...lol..do u?
Gloria E. said:
Dear Phoebe,
It's not your imagination. I started out as Type I and then Type II began and finally Type II popped up on both sides (bilateral). There are other members here who have had this happen. You're not going crazy. It just seems to be part of the progression of the condition.
Try not to freak out about it because that can cause pain flares. I know it's alarming, but it's not life threatening. I've been able to stay out of the emergency room for about six months now and that's a major achievement. In addition to Type I and bilateral Type II, I have four other chronic pain conditions, but I remind myself that it could be worse.
We're here for you and encorage you to vent!!!
Vanessa,
I'm unclear as to why you can't admit yourself to a treatment place for the psych place? Is it $ or the thought you might not receive treatment for the physical aspects of your health while in-patient? Where do you live because there is a place in Jacksonville, Fl that might be able to help you. Please elaborate.