Hi Everyone. I'm very confused and just wondering if anyone out there can give me any insight into things or has had similar experiences. I was diagnosed by Dr. Casey as having trigeminal neuropathy but I have both type 1 and type 2 symptoms. I haven't had the electric shocks for a while now, but tonight they started again. They are mild (and I cant even imagine how some of you folks deal with the huge ones) and scary and unnerving (no pun intended) to me. When I first got them they would come every 2 minutes or so at night usually , but tonight they were coming every 10 secs for a while... I am not on any meds.... My type 2 pain is pretty much controlled with advil right now...I have trileptal sitting on my night stand but I don't take it because the couple times I did take it I hated it...I am very scared... I don't even want to write this...... but I know it is just a matter of time before the electric shocks go from mild to not so mild, and I am very scared..And I don't understand why I was given the diagnosis of neuropathy because I thought (and please explain this to me if I am wrong) if you are experiencing any kind of electric type of shock/sensation then that means you have Type 1 classic trigeminal neuralgia, but Dr. Casey was aware of my mild electric shocks at the time, but kept on repeating over and over again you don't have neuralgia , you have trigeminal neuropathy... Now, labels and diagnosis are important because it steers one to what meds to take and also if I am eligible for any surgeries..So, I am interested to see if anyone else out there has trigeminal neuropathy and also has mild electric shocks and if so , did they increase in pain and intensity over time (I am afraid to ask). Thank you soooo much for reading and blessings to each and every one of you. :)
Elvera
I would email Casey
and ask whats the difference in the two diagnosis…
Tell him you don’t remember,
Tell him you are needing to settle the strikes in your face
Let us know!
Or message RED here, and ask him the difference in type and in treatments!
Let us know.
Did you get some lidocaine patches from anybody yet!!?
You know, I never think of just emailing him because I know he has folks like how you were before your surgery on his patient list, who are FAR worse than me right now, and I guess because I admire him so much , I just hate bugging him because he earned his 300 bucks for our initial appointment many many past emails ago... I just never met such a great doctor that is willing to work for free, and lets face it , his time answering these extra emails, etc is work....I have not gotton the lidocaine patches yet, because knock on wood....my type 2 stuff has lessened in severity... its still there, but just a mild background pain I can ignore for the most part... How have you been??? I take it still pain free which is WONDERFUL. I think about you from time to time, walking everywhere with that lidocream in your pocket just in case.... I don't blame you at all for doing that... I know if I had experienced the level of pain and electrical lazer stuff that I remember you describing, I would do the same thing... I just took some Topamax so I have meds I can take for basically each type.. I am starting to have a small pharmacy... Dr. C gave me a script for trileptal, when I threw up on that, Topamax, when I threw up on that, and had type 2 symptoms instead of just type 1 he gave me nortriptyline.... They have all been sitting on my table collecting dust, lol, because I hate meds...I got a lower dosage of Topamax from a PCP so I could ease into the higher mg and it is better on my stomach as well this way... Anyways, always good to hear from you Ms. KC Dancer.. BTW, I just love how that sounds...KC Dancer :)
Cleo, can you elaborate on this? Electrocuted all day and night .... had to do with the nerve being injured and the ability to heal.
Are you saying it was trying to heal?
I was diagnosed with atypical TN2 and I have similar to what you're describing. I'm just over 2 years into this but I've only a few times had massive jolts of pain which I would assume is more like classic TN. I get why people take medication, it would be unbearable to live with that day after day. For me, the constant crushing and burning feeling is draining, exhausting. I get the mild shocks everyday too. I just hope they never progress to worse. I'm not on any meds either, tried several things for pain relief over time and had bad reactions. I've been woken by "zapping" jolts in the night which is always scary. I dread those attacks the most because they catch me off guard. Those attacks are more severe and usually last about 20 minutes. Does this happen to you? You're lucky advil is helping you, I took that for months and it did nothing for the pain. I'm curious - what exactly is trigeminal neuropathy and did something happen (injury?) that would've caused that to happen to you? I'd had no dental work, nothing. Apparently my grandmother suffered from "neuralgia" but she's been gone many years so I have no one to ask about it. I've wondered if mine could be genetic, or from a virus .... I'm still searching for an answer to the "why" question. Futile, I know.
I get shocks too. I mainly have Type 2 pain and all of the patterns that come with that. My pain switches places often-in my tongue, then up on the roof, over to my teeth, etc. But I have also noticed that I have increasing lightening bolt shocks coming through. They are not necessarily painful but they are sudden, and stop as quickly as they start. It frightens me as well because I know that they are more Type 1 than Type 2. I have them coming in through branches 2 and 3 which is where I have Type 2 pain. I have also have the odd one through branch 1--around my eye and up my forehead.
My TN seems to be worsening all together because I also have bilateral pain now. I am seeing a specialist at the end of April. Let me know if you find anything out.
And Obsidian. I am the fourth person in my family to have TN. My mother has suffered horribly from Type 1, my aunt had it only when she was pregnant, and my great grandmother apparently also had it. There are studies being done into hereditary factors of TN. My TN was not caused by dental work and neither was anyone else's in my family. I have spoken with a few other people that have it in their family but it seems to be very rare.
Does anyone else get shocks elsewhere besides the face? I am getting the zaps (kind of like a cross between electrical and someone snapping my cheek with a rubber band - the sharp snap) as well as all over my body electric. Asked my new neuro today and he thought maybe fibromyalgia?
I guess for most of us it cannot even be "just" tn. We get the entire buffet of pain...{{{{sigh}}}}
Oh, thanks so much for your reply Cleo. Atleast now I know that the diagnosis is correct.. I cant even imagine what it must have been like to feel like you are being electrocuted all day and night.. At least mine are mild and mostly come at night for some reason..
Cleo said:
Shocking in my case was like being electrocuted all day and night. It had nothing to do with the classic form of tn. It had to do with the nerve being injured and the ability to heal.
wow, so many things come to mind when I read your reply Obsidian.. I cant imagine being woken up by an electrical shock and then having it last for 20 minutes??? that is horrible. No, this has Never happened to me and I am sooo sorry it is happening to you. I would freak out I know. From what I have read, I thought if it is classic trigeminal neuralgia, the only good news is it never wakes you up with a zap. For some reason, sleep interferes with the ability to cause the nerve impulse.. If I am wrong about that, someone please clarify! Have you tried Nortriptyline for the type 2 pain??? It works very good for the constant teeth pain, burning jaw, gum and cheek pain stuff. I am just a couple weeks over having this for one year so I hope I don't have your symptoms to look forward to, no offense. I share your fear that the mild shocks get worse, but it sounds like they have already gotten worse for you, atleast occasionally. Neuropathy means nerve injury and trigeminal neuropathy means an injury to the trigeminal nerve.. And yes, I had an upper molar extraction and afterwards immediately I had chronic numbness in my gums that has expanded into the neighboring tooth near the extraction site.. I thought at the time, that was bad, now I would be elated to have that as my only symptom. You know, from everything I read that you wrote Obsidian, the fact that your grandma had it, and yes , they are finding that there are some genetic factors to getting trigeminal neuralgia, and no it doesn't come from viruses, it really sounds to me that you actually have trigeminal neuralgia, type 1 and type 2, but your type 1 is mild right now.. There is some good news in that because if this is indeed true, you may be a candidate for the MVD surgery and I am not... If I were you, I would get a second opinion, because the MVD surgery is the most successful if done in the beginning 7 years.... You have to be careful, there are a lot of neurologists out there that don't know what they are doing when it comes to this stuff and that is why I drove 7 hours to see the best neuro surgeon right away. Now that you have these newer , more severe type 1 symptoms, I would get a second opinion, because you didn't have a dental procedure that causes this... Hope I didn't make things worse for you, I just want you to be informed and get the best care possible because it is out there!!!
Obsidian said:
I was diagnosed with atypical TN2 and I have similar to what you're describing. I'm just over 2 years into this but I've only a few times had massive jolts of pain which I would assume is more like classic TN. I get why people take medication, it would be unbearable to live with that day after day. For me, the constant crushing and burning feeling is draining, exhausting. I get the mild shocks everyday too. I just hope they never progress to worse. I'm not on any meds either, tried several things for pain relief over time and had bad reactions. I've been woken by "zapping" jolts in the night which is always scary. I dread those attacks the most because they catch me off guard. Those attacks are more severe and usually last about 20 minutes. Does this happen to you? You're lucky advil is helping you, I took that for months and it did nothing for the pain. I'm curious - what exactly is trigeminal neuropathy and did something happen (injury?) that would've caused that to happen to you? I'd had no dental work, nothing. Apparently my grandmother suffered from "neuralgia" but she's been gone many years so I have no one to ask about it. I've wondered if mine could be genetic, or from a virus .... I'm still searching for an answer to the "why" question. Futile, I know.
OMG Jane, I didn't know you had the electrical shocks too, I thought you just had type 2 stuff.. So you have had lighting bolt shocks around your eye and through your forehead????? That would scare the hell out of me. That is weird how your aunt had it only when she was pregnant... I would be like, My God Auntie, just don't get Pregnant ever ever again, lol.. I mean, it makes sense there may be genetic factors because some brains have nerves and blood vessels that just genetically lay to close to the ganglion thing of the trigeminal nerve I guess.. Sorry I am referring to you as a brain Jane, I think your brain rocks because you are such a sweet and nice and inspiring gal!!! Now that I know all this, on the one hand I feel more sorry for you Jane, but on the other hand, I have more hope for you because this sounds more like trigeminal neuralgia than most likely what I have, neuropathy, and therefore, You can have the MVD surgery which I wish like hell I could get because atleast there is a chance you can be like KC Dancer KC who had the surgery and now she is PAIN FREE and ELECTRICAL SHOCK FREE!!!!
justjane37 said:
I get shocks too. I mainly have Type 2 pain and all of the patterns that come with that. My pain switches places often-in my tongue, then up on the roof, over to my teeth, etc. But I have also noticed that I have increasing lightening bolt shocks coming through. They are not necessarily painful but they are sudden, and stop as quickly as they start. It frightens me as well because I know that they are more Type 1 than Type 2. I have them coming in through branches 2 and 3 which is where I have Type 2 pain. I have also have the odd one through branch 1--around my eye and up my forehead.
My TN seems to be worsening all together because I also have bilateral pain now. I am seeing a specialist at the end of April. Let me know if you find anything out.
And Obsidian. I am the fourth person in my family to have TN. My mother has suffered horribly from Type 1, my aunt had it only when she was pregnant, and my great grandmother apparently also had it. There are studies being done into hereditary factors of TN. My TN was not caused by dental work and neither was anyone else's in my family. I have spoken with a few other people that have it in their family but it seems to be very rare.
That is a fascinating question shadow2 and I am sorry you are getting those zaps throughout your entire body!! I cant even imagine that... I know there is something called Referrent pain, which I guess means something like the trigeminal nerve pain can cause pain lower than the face area, but I have not heard anything about causing specifically electrical shocks lower than the face.. I hope you get some comments on your question shadow2 because I am very curious as well.
shadow2 said:
Does anyone else get shocks elsewhere besides the face? I am getting the zaps (kind of like a cross between electrical and someone snapping my cheek with a rubber band - the sharp snap) as well as all over my body electric. Asked my new neuro today and he thought maybe fibromyalgia?
I guess for most of us it cannot even be "just" tn. We get the entire buffet of pain...{{{{sigh}}}}
You are a lot more excited about it than I am! lol. It scares the beans out of me. I am learning as I go here. One good thing that has come out of the new bilateral pain and lightening bolts is that it has motivated me to take this much more seriously and seek out professional help which I have rather ignored up until now. I live in a small town and have to be a strong advocate for myself to get proper care. Hopefully, my appointment with the TN specialist at Toronto Western Hospital on April 30th will shed some light on what is happening and give me some much needed information and direction.
I wish I could see Dr. Casey. It isn't the distance that would be an issue, it would be the cost. In Canada we have free medical care and that is godsend, although we usually have to wait much longer for care. I am not jumping into anything and if MVD is an option for me I will have to a lot more research on everything and look into the best neurosurgeons in Canada.
Even though my mom and aunt have had TN they know surprisingly little about it. The internet is an amazing tool and there is so much more information available than even a few years ago. I have been grilling my mom and my aunt to learn as much as I can from their experiences.
My aunt did only have it when she was pregnant and she only had one child. She saw a neurologist during that and couldn't even go on medication because she was pregnant. She had Type 1 TN in the middle branch for three months. Excruciating! My mom has suffered horribly from Type 1 TN through the middle branch off and on for years. She also has MS so her case is a bit more complex. She has seen neurologists and neurosurgeons and has been on very high doses of Tegretol and Neurontin at times. It haunted her for eight straight years and now she has been in complete remission for five years!!!! Yeah, that is exciting. It can happen!
The genetic thing makes sense to me too. We all suffer from high blood pressure and it just makes sense, in my opinion, that it is all linked. I am actually participating in a study being done on genetic factors of TN at the University of Toronto. They are looking at families that have TN in them and it is usually through the maternal side, which mine is. I just submitted a detailed family tree following neurological symptoms. My pain was not caused by a dental procedure so I believe that it must be neuralgia. Looking forward to learning more about it.
And thank you for the kind words. Right back at you! You are inspiring, so thoughtful and caring and very hilarious sometimes!!!
Hope you are having a great day :)
Scared & Angry gal said:
OMG Jane, I didn't know you had the electrical shocks too, I thought you just had type 2 stuff.. So you have had lighting bolt shocks around your eye and through your forehead????? That would scare the hell out of me. That is weird how your aunt had it only when she was pregnant... I would be like, My God Auntie, just don't get Pregnant ever ever again, lol.. I mean, it makes sense there may be genetic factors because some brains have nerves and blood vessels that just genetically lay to close to the ganglion thing of the trigeminal nerve I guess.. Sorry I am referring to you as a brain Jane, I think your brain rocks because you are such a sweet and nice and inspiring gal!!! Now that I know all this, on the one hand I feel more sorry for you Jane, but on the other hand, I have more hope for you because this sounds more like trigeminal neuralgia than most likely what I have, neuropathy, and therefore, You can have the MVD surgery which I wish like hell I could get because atleast there is a chance you can be like KC Dancer KC who had the surgery and now she is PAIN FREE and ELECTRICAL SHOCK FREE!!!!
justjane37 said:
I get shocks too. I mainly have Type 2 pain and all of the patterns that come with that. My pain switches places often-in my tongue, then up on the roof, over to my teeth, etc. But I have also noticed that I have increasing lightening bolt shocks coming through. They are not necessarily painful but they are sudden, and stop as quickly as they start. It frightens me as well because I know that they are more Type 1 than Type 2. I have them coming in through branches 2 and 3 which is where I have Type 2 pain. I have also have the odd one through branch 1--around my eye and up my forehead.
My TN seems to be worsening all together because I also have bilateral pain now. I am seeing a specialist at the end of April. Let me know if you find anything out.
And Obsidian. I am the fourth person in my family to have TN. My mother has suffered horribly from Type 1, my aunt had it only when she was pregnant, and my great grandmother apparently also had it. There are studies being done into hereditary factors of TN. My TN was not caused by dental work and neither was anyone else's in my family. I have spoken with a few other people that have it in their family but it seems to be very rare.
Hi Jane
Yeah, your mom has been through a lot in this life so far, hasn't she. It is awesome to hear that she has been in remission for 5 solid years!! So you are a perfect example where it can seem like it was related to a root canal or dental work, but it really isn't. I understand completely why you are nervous about the results of the upcoming MRI. Having TN is bad enough and if you found out you also have MS as well like your mom??? That would be to much and overwhelming...Lets pray that is not the case.. I was going to say, if you had MS you would be exhausted all the time, but then again, that's hard to measure because you are probably tired a lot because of the amitriytline.. You know thinking back to your aunt, that is very interesting her story. Her story suggests, (that she only had symptoms during pregnancy) that hormones have a lot to do with all this as well... There's this theory out there , that I didn't buy, but maybe now I will re think it, that women experience the pain of trigeminal neurapathy more than men, and they think it has to do with the hormone estrogen.. When I read that , I was like... oh, please.... just another gender biased BS bogus confounding variable research, but after hearing about your aunt, perhaps it has some merit. Finally, I keep on forgetting that the Canadian government might not be to interested in paying for treatment in another country, lol.... silly them for being so technical about things (sarcasm).. Yeah, that MVD surgery is around 80,000 so you most definitely will need to find an exceptional surgeon in Canada.. However, just for a consult with Dr. Casey, I paid him 300 bucks cash because my insurance only covers doctors in the state of Wisconsin, so don't feel so bad, you atleast have an entire country to search around, I only have a hick town , 10 yrs behind the times state to find the best doctors in for long term care.
Good question shadow2: I am guessing that in a healthy nerve the electrical impulses stay safely protected inside the nerve, but when that myelin sheath and outer covering gets torn after an injury, the electrical impulses don't fire to the next nerve cell like they should and instead get felt by our sorry selves??? Just guesses really.. Please elaborate Cleo.....
shadow2 said:
Cleo, can you elaborate on this? Electrocuted all day and night .... had to do with the nerve being injured and the ability to heal.
Are you saying it was trying to heal?
Hi Cleo. One last question for you. And this to me is the Million dollar question. Did you have pain in both sides of your face or just the side where the injury took place. You had a nerve injury from dental work, I had a nerve injury from dental work. My injury happened on the upper left side of my face during an upper left molar extraction.. So here is the million $ question. If my injury happened on the upper left side of my face giving me some pain and numbness on left side, why did 6 months later I experience the worse pain on the right upper and lower side of my face and why is it still continuing to be the most painful part of all this , the exact opposite side of where the initial injury take place..
Cleo said:
Shocking in my case was like being electrocuted all day and night. It had nothing to do with the classic form of tn. It had to do with the nerve being injured and the ability to heal.
Hi again Shadow2. I just plugged in a question for you on google search... I simply asked,"Why am I getting electrical shocks all over my body?" You can do it too. Basically, I read a variety of reasons from benign reasons such as withdrawal symptoms from skipping or stopping antidepressants to more severe reasons such as MS, to peripheral neuropathy, fibromyalgia, etc... You owe it to yourself to get a good dr who can answer that question for you and to perhaps rule out the more severe diagnosis...
shadow2 said:
Does anyone else get shocks elsewhere besides the face? I am getting the zaps (kind of like a cross between electrical and someone snapping my cheek with a rubber band - the sharp snap) as well as all over my body electric. Asked my new neuro today and he thought maybe fibromyalgia?
I guess for most of us it cannot even be "just" tn. We get the entire buffet of pain...{{{{sigh}}}}
Hi Scared & angry gal,
My description was misleading, sorry. It's not one shock that lasts 20 minutes. It feels like rapid firing of many tiny electrical shocks. It affects above my lip, sometimes my chin and lots of them in my mouth - teeth, gums and even the right side of the tongue was involved once. It's like a light being switched on and off rapidly for 20 minutes, I hope that gives a better idea of what those episodes are like for me. Fortunately it hasn't happened recently.
My neurologist thought it was mostly type 2 but when I talked to him a couple months ago he thought there might be some type 1 involvement starting. MVD? NO! I'm not considering surgery. I had major surgery 12 years ago and it was 2 years before I felt better, and I swore up and down I'd never go through that misery again. If I had the classic type 1 pain all the time then I might be desperate enough to go for it.
So trigeminal neuropathy must have an identifiable cause? i.e. you got it from having an upper molar extracted? So is it possible for your trigeminal neuropathy to turn into full blown TN? Did they tell you if trigeminal neuropathy ever heals and clears up or is it a "permanent" injury? I'm sorry you're having more pain, I hope it goes away for you soon.
justjane - that's so interesting about the TN running through your family. My mother recently mentioned to me that she clearly remembers my grandmother (her mother in law, so my paternal grandmother) suffering from neuralgia. So if mine was genetic, it would've been passed down from my father's side of the family. No one else has had anything like this as far as I know. I'd be interested to hear about anything else you find out about the hereditary possibility - I'm always trying to learn more about this disease. Most of the doctors and dentists I saw last year were totally clueless, such a waste of time and money. I pretty much figured out what I had from googling my symptoms over and over, and every single time TN would come up. So I wasn't too surprised when the neurologist said TN ... I think I already knew. It was still a shock though, no one wants to hear that for a diagnosis.
Scared & Angry gal said:
wow, so many things come to mind when I read your reply Obsidian.. I cant imagine being woken up by an electrical shock and then having it last for 20 minutes??? that is horrible. No, this has Never happened to me and I am sooo sorry it is happening to you. I would freak out I know. From what I have read, I thought if it is classic trigeminal neuralgia, the only good news is it never wakes you up with a zap. For some reason, sleep interferes with the ability to cause the nerve impulse.. If I am wrong about that, someone please clarify! Have you tried Nortriptyline for the type 2 pain??? It works very good for the constant teeth pain, burning jaw, gum and cheek pain stuff. I am just a couple weeks over having this for one year so I hope I don't have your symptoms to look forward to, no offense. I share your fear that the mild shocks get worse, but it sounds like they have already gotten worse for you, atleast occasionally. Neuropathy means nerve injury and trigeminal neuropathy means an injury to the trigeminal nerve.. And yes, I had an upper molar extraction and afterwards immediately I had chronic numbness in my gums that has expanded into the neighboring tooth near the extraction site.. I thought at the time, that was bad, now I would be elated to have that as my only symptom. You know, from everything I read that you wrote Obsidian, the fact that your grandma had it, and yes , they are finding that there are some genetic factors to getting trigeminal neuralgia, and no it doesn't come from viruses, it really sounds to me that you actually have trigeminal neuralgia, type 1 and type 2, but your type 1 is mild right now.. There is some good news in that because if this is indeed true, you may be a candidate for the MVD surgery and I am not... If I were you, I would get a second opinion, because the MVD surgery is the most successful if done in the beginning 7 years.... You have to be careful, there are a lot of neurologists out there that don't know what they are doing when it comes to this stuff and that is why I drove 7 hours to see the best neuro surgeon right away. Now that you have these newer , more severe type 1 symptoms, I would get a second opinion, because you didn't have a dental procedure that causes this... Hope I didn't make things worse for you, I just want you to be informed and get the best care possible because it is out there!!!
Obsidian said:
I was diagnosed with atypical TN2 and I have similar to what you're describing. I'm just over 2 years into this but I've only a few times had massive jolts of pain which I would assume is more like classic TN. I get why people take medication, it would be unbearable to live with that day after day. For me, the constant crushing and burning feeling is draining, exhausting. I get the mild shocks everyday too. I just hope they never progress to worse. I'm not on any meds either, tried several things for pain relief over time and had bad reactions. I've been woken by "zapping" jolts in the night which is always scary. I dread those attacks the most because they catch me off guard. Those attacks are more severe and usually last about 20 minutes. Does this happen to you? You're lucky advil is helping you, I took that for months and it did nothing for the pain. I'm curious - what exactly is trigeminal neuropathy and did something happen (injury?) that would've caused that to happen to you? I'd had no dental work, nothing. Apparently my grandmother suffered from "neuralgia" but she's been gone many years so I have no one to ask about it. I've wondered if mine could be genetic, or from a virus .... I'm still searching for an answer to the "why" question. Futile, I know.
Hi Obsidian... yeah, I have that question too... Can my trigeminal neuropathy turn into trigeminal neuralgia.. My answer... I don't know.. I don't think so, but I am not sure... For your other question: Many small injuries to the trigeminal nerve do heal on there own in time.. However, I was told that if it doesn't heal within one year,, it is permanent... And I am discovering, since I am slightly over the one year mark now, not only is this permanent , but I am getting more and more symptoms and new pains as time goes on.. :(
Obsidian said:
Hi Scared & angry gal,
My description was misleading, sorry. It's not one shock that lasts 20 minutes. It feels like rapid firing of many tiny electrical shocks. It affects above my lip, sometimes my chin and lots of them in my mouth - teeth, gums and even the right side of the tongue was involved once. It's like a light being switched on and off rapidly for 20 minutes, I hope that gives a better idea of what those episodes are like for me. Fortunately it hasn't happened recently.
My neurologist thought it was mostly type 2 but when I talked to him a couple months ago he thought there might be some type 1 involvement starting. MVD? NO! I'm not considering surgery. I had major surgery 12 years ago and it was 2 years before I felt better, and I swore up and down I'd never go through that misery again. If I had the classic type 1 pain all the time then I might be desperate enough to go for it.
So trigeminal neuropathy must have an identifiable cause? i.e. you got it from having an upper molar extracted? So is it possible for your trigeminal neuropathy to turn into full blown TN? Did they tell you if trigeminal neuropathy ever heals and clears up or is it a "permanent" injury? I'm sorry you're having more pain, I hope it goes away for you soon.
justjane - that's so interesting about the TN running through your family. My mother recently mentioned to me that she clearly remembers my grandmother (her mother in law, so my paternal grandmother) suffering from neuralgia. So if mine was genetic, it would've been passed down from my father's side of the family. No one else has had anything like this as far as I know. I'd be interested to hear about anything else you find out about the hereditary possibility - I'm always trying to learn more about this disease. Most of the doctors and dentists I saw last year were totally clueless, such a waste of time and money. I pretty much figured out what I had from googling my symptoms over and over, and every single time TN would come up. So I wasn't too surprised when the neurologist said TN ... I think I already knew. It was still a shock though, no one wants to hear that for a diagnosis.
Scared & Angry gal said:
wow, so many things come to mind when I read your reply Obsidian.. I cant imagine being woken up by an electrical shock and then having it last for 20 minutes??? that is horrible. No, this has Never happened to me and I am sooo sorry it is happening to you. I would freak out I know. From what I have read, I thought if it is classic trigeminal neuralgia, the only good news is it never wakes you up with a zap. For some reason, sleep interferes with the ability to cause the nerve impulse.. If I am wrong about that, someone please clarify! Have you tried Nortriptyline for the type 2 pain??? It works very good for the constant teeth pain, burning jaw, gum and cheek pain stuff. I am just a couple weeks over having this for one year so I hope I don't have your symptoms to look forward to, no offense. I share your fear that the mild shocks get worse, but it sounds like they have already gotten worse for you, atleast occasionally. Neuropathy means nerve injury and trigeminal neuropathy means an injury to the trigeminal nerve.. And yes, I had an upper molar extraction and afterwards immediately I had chronic numbness in my gums that has expanded into the neighboring tooth near the extraction site.. I thought at the time, that was bad, now I would be elated to have that as my only symptom. You know, from everything I read that you wrote Obsidian, the fact that your grandma had it, and yes , they are finding that there are some genetic factors to getting trigeminal neuralgia, and no it doesn't come from viruses, it really sounds to me that you actually have trigeminal neuralgia, type 1 and type 2, but your type 1 is mild right now.. There is some good news in that because if this is indeed true, you may be a candidate for the MVD surgery and I am not... If I were you, I would get a second opinion, because the MVD surgery is the most successful if done in the beginning 7 years.... You have to be careful, there are a lot of neurologists out there that don't know what they are doing when it comes to this stuff and that is why I drove 7 hours to see the best neuro surgeon right away. Now that you have these newer , more severe type 1 symptoms, I would get a second opinion, because you didn't have a dental procedure that causes this... Hope I didn't make things worse for you, I just want you to be informed and get the best care possible because it is out there!!!
Obsidian said:
I was diagnosed with atypical TN2 and I have similar to what you're describing. I'm just over 2 years into this but I've only a few times had massive jolts of pain which I would assume is more like classic TN. I get why people take medication, it would be unbearable to live with that day after day. For me, the constant crushing and burning feeling is draining, exhausting. I get the mild shocks everyday too. I just hope they never progress to worse. I'm not on any meds either, tried several things for pain relief over time and had bad reactions. I've been woken by "zapping" jolts in the night which is always scary. I dread those attacks the most because they catch me off guard. Those attacks are more severe and usually last about 20 minutes. Does this happen to you? You're lucky advil is helping you, I took that for months and it did nothing for the pain. I'm curious - what exactly is trigeminal neuropathy and did something happen (injury?) that would've caused that to happen to you? I'd had no dental work, nothing. Apparently my grandmother suffered from "neuralgia" but she's been gone many years so I have no one to ask about it. I've wondered if mine could be genetic, or from a virus .... I'm still searching for an answer to the "why" question. Futile, I know.
Hi again Sacred & Angry gal,
I hope your injury isn't permanent ... even if it has been just over a year. The new symptoms and more pain you're experiencing... hmm.. I remember reading something about TN nerves "sprouting"? I think it was posted by someone here and of course I can't remember by whom or when. My memory is shot since the TN began and I'm not taking daily medication - so can't blame it on the meds. I wonder if the TN is screwing with my brain as well as my sanity :(
Anyway, it caught my attention because it was something new I hadn't heard of. Sprouting is when the nerve injury/misfiring spreads to other nerves and more become involved ... I think! I'm not a doctor (that's obvious, right?!). It might be something for you to google. The internet was my best friend last year before I got a diagnosis from the neurologist.
That might have been me talking about sprouting, lol... I learned about the term from the video on here that Dr. Casey is in. He talks about sprouting and how it is a very bad thing that occurs.. I don't know if this is sprouting or not, but at some point the brain creates a neuron memory so to speak, with patterns of mis firing nerves that are entrenched in memory, so even if you fix the original problem and there is no longer a nerve injury like in the beginning, because you fixed it to late, now there is all this entrenched sprouting crap that perhaps moves on to other branches of the trigeminal nerve and a mountain of crap is now created from a small molehill nerve injury... that is my scientific explanation, lol... u know u got your lung transplants, you got your heart transplants, why cant I just have a new face and brain transplant... is that asking for the world, lol???Perhaps in the future.....
Obsidian said:
Hi again Sacred & Angry gal,
I hope your injury isn't permanent ... even if it has been just over a year. The new symptoms and more pain you're experiencing... hmm.. I remember reading something about TN nerves "sprouting"? I think it was posted by someone here and of course I can't remember by whom or when. My memory is shot since the TN began and I'm not taking daily medication - so can't blame it on the meds. I wonder if the TN is screwing with my brain as well as my sanity :(
Anyway, it caught my attention because it was something new I hadn't heard of. Sprouting is when the nerve injury/misfiring spreads to other nerves and more become involved ... I think! I'm not a doctor (that's obvious, right?!). It might be something for you to google. The internet was my best friend last year before I got a diagnosis from the neurologist.