I haven't seen anyone talk about bilateral TN 1 or 2. I realize how extremely rare it is, but I have it, and I can't eat and have lost 16 pounds since getting it and I need someone who either has it or knows about it to talk to! Maybe to give me some ideas of what to eat other than pureed food. Also, to tell me how not to be so afraid that I'm going to get an attack on either side whereas before I was afraid of only one side. The stress is very bad.
Is there anyone out there?
Barb
There are over a hundred people among our members who experience bilateral TN 1 or TN 2 or Both. Try the term "bilateral" in our search window, Barby. It should lead you to multiple postings and through those to the people who made them.
I think what you need besides tips on being able to keep your strength up and eat more normally, is a doc who knows what they're doing in management of TN pain. What Meds are you on presently?
Regards, Red
Hello,
Of course sorry to hear your new plight Barb. I have been having pain now on both sides most recently as well, but not to the extent you are discribing. I will be speaking to my nero hopefully this week. Will have some more info from him and will share what he thinks is going on as well. I have read so much (to much really) recently that even diagnosis is so very difficult. My doc believes there is simply not a personal concrete issue, it’s simply imdependent for us all.We must always keep our best spirits up even in the most desperate times. I do not even try to explain to friends what TN is anymore.
Bless us all!
Gerry
Hi Barb, I'm here (nice to meet you) I'm Julie. There are tons here with bilateral TN., you might have just come at a slow time. They call it atypical TN. You can do a search for it, theres lots of discussions on it. I'm probably not the best one to answer your questions because my attacks come in clusters and are very far apart (months). I do have attacks on both sides. On my left I have it from all 3 branches, along with hemofacial spasms and whats called torticollis spasms as well. It's horrendous. My right side is much milder, I don't know if it's from the tegretol or if it's just milder, but I have tn on the right in my ear. It feels like someone is taking an ice pick and pecking it right in that ear.
I have a history of peripheral nerve damage and cranial neuropathies (burning mouth syndrome, smell and taste distortions and tn and geniculate neuralgia) most likely from my systemic lupus, but the jury is still out on if my lupus has caused the tn or shingles or cervical osteoarthritis (bad oa). It's complicated, lol.
The people here are wonderful Barb. I'm glad you came.
Many hugs, and I'm so sorry you have this THING. Love Julie
Hi Barb,
So sorry you're hurting to the point of not being able to eat. I really feel for you. I have bilateral/type 2 TN, too, but at the moment it's being managed pretty well by Neurontin and Baclofen.
Would love to offer you support and encouragement. We all need to know that we're not alone, especially with this condition!
Big hugs,
Vicki
I think mine may have just gone bilateral, I've had pain on my left side upper & lower gums and been on Tegretol, seen coming off it for side effects problems ive noticed similar sensations in my right upper & lower gums although not at severe as my left side,
I know how you feel, when you think youve got this nasty disease under control and think there are no more suprises it kicks you in the face literally!!! so annoyed :( but i have 3 months of clinical placement, clincal assessment and 4 university exams to sit because TN pain forced me to defer them, so i have no time to feel sorry for myself i will be angry and fight this bitch known as TN!!!!
rant over :)
hang in there your not alone xx
2 trips to the dentist one in jan and one yesterday says my teeth are fine so that WAS my good side..
wondering if this is how its starts with bilateral? and how do I know if the dentist can really tell?are the xrays stong enough?Ive treated myself for sinus infection with antibiotics but still having pain today.WTH to do now?
as
X-rays may detect abscess but they won't be useful in confirming TN, June. It's not always clear that there is a discrete cause for trigeminal system pain. But I think one useful step might be a FIESTA MRI procedure with sub-millimeter resolution and a Trigeminal protocol, conducted with and without contrast agent. Not all MRI centers perform this procedure, and not all insurance companies pay for it. But it has the best chance of revealing discrete vascular compressions of the two trigeminal nerves (one on each side).
Regards, Red
thank you...Im suppose to be seeing a root canal specialist also (money money money) tempted to just ask for the root canals so I can rule out those teeth..
Richard A. "Red" Lawhern said:
X-rays may detect abscess but they won't be useful in confirming TN, June. It's not always clear that there is a discrete cause for trigeminal system pain. But I think one useful step might be a FIESTA MRI procedure with sub-millimeter resolution and a Trigeminal protocol, conducted with and without contrast agent. Not all MRI centers perform this procedure, and not all insurance companies pay for it. But it has the best chance of revealing discrete vascular compressions of the two trigeminal nerves (one on each side).
Regards, Red
Barby, I am in the lucky position of having Type I on the right and Type II on the left! But I agree with Red, you need better medical care than this, it's utterly unacceptable that someone is neglecting you to this degree. whilst always being polite I am always very assertive over my treatment as I really want the quality of life I enjoy to continue. You will remain in my thoughts and I hope for better for you.
Root canal can make matters worse, June. Unless you have positive X-ray confirmation of abscess, I'd advise you against such treatment. Check with a neurologist before having such work done.
Regards, Red
Red is absolutely correct. I had 4 root canals done over a periods of almost 2 years. I have a super endo and informed him I was getting a second opinion for each one. He was absolutely correct on all. In fact prior to diagnosis of tn he saw me at least 8 times at no cost. Great fellow, trust him explicitely! Good luck!!
At my young age of 61 seems like everything exploded for me. Not complaining because my health prior was perfect. Feel so much empathy for you and everyone who have this disease at such a very you age.
Seeing my endo to confirm my suspisiossions of bilateral type 2.
Gerry
Hi, Red,
Thanks for answering me. I am currently on 800 mg. of Tegretol and 1600 mg. of Neurontin. My neurologist (I don't think I can do better because she is the chief of staff at Washington University in St. Louis, and her sub-specialty is TN). She said when I have breakthrough pain there is nothing she can do, and this breakthrough pain has been lasting for about 2 months, with some good days here and there.
I should add that she sent me to a surgeon to get the gamma knife, but after hearing the low percentages of it working and the permanent side effects even if it doesn't work, my husband and I decided I should try and wait out the pain, as it has gone away before. I don't want to be permanently numb on one side of my face and still have the same pain.
So, I really can't blame my doctor. She has offered other medications but has told me they are not as effective. She has never offered trileptal (I guess her experience with it has not been good). She offered me baclofen and Elavil (which she said would make me sleepier than I am now). I think I've mentioned on other posts that in 7 months I have never acclimated to Tegretol. By the second dose I am like a drunk person. But for the first 4 months I accepted this because I was pain-free. The bilateral part hit me about 2 months ago (I've had TN for a year - I went to a different neurologist at first who only had be on Neurontin) so I guess the bilateral is what's hard to control.
Barb
Richard A. "Red" Lawhern said:
There are over a hundred people among our members who experience bilateral TN 1 or TN 2 or Both. Try the term "bilateral" in our search window, Barby. It should lead you to multiple postings and through those to the people who made them.
I think what you need besides tips on being able to keep your strength up and eat more normally, is a doc who knows what they're doing in management of TN pain. What Meds are you on presently?
Regards, Red
Hi, everyone,
Thank you all so much for answering and caring. My neurologist has diagnosed me with TN 1 as I have the typical triggers -- cold air brings on pain, stress brings it on, sometimes just a brush of my cheek brings it on, etc., and I don't have constant aching, but a few seconds at a time that feel like a knife is stabbing me in my gums, then a break for a while, then the stabbing again. It can stop for hours, then come again maybe just one time, or several. But I don't want to aggrevate it in any way like by chewing and I am always very scared to brush my teeth. In the morning, after 1 hour of waiting for the meds to kick in, brushing my teeth is not a problem, but at night is usually when the pain comes and there are many nights that I just won't brush my teeth at all. And the irony to that, which I'm sure you've all thought of, is that the last place we want to end up at is the dentist's office, and not brushing our teeth is sure to get us there -- but what can I do?
I know that TN 2 is just as painful, maybe more, who can say? Actually I think TN 2 sounds more painful. If you have constant pain without let up, WHEW! And I've read that it's harder to fix as surgeries may not work. But there is always hope for something new out there.
Well, who knows, that may be what I have also. Doctors don't know everything - isn't that the truth??? We're all in pain, that's the bottom line. Thank you all for caring about me. I care about all of you also, and I hope your pain lets up soon and something is found to help you. All we can do is hope every day.
Barb
Vicki Dvorak said:
Hi Barb,
So sorry you're hurting to the point of not being able to eat. I really feel for you. I have bilateral/type 2 TN, too, but at the moment it's being managed pretty well by Neurontin and Baclofen.
Would love to offer you support and encouragement. We all need to know that we're not alone, especially with this condition!
Big hugs,
Vicki
i have had bilateral for about 6 years now and recently developed occipital as well i have been on tegretal, neurotin and lyrica with each ending up no longer working after a while i am currently on amitryptoline and lamotrogen which together seem to work okay less break throughs my neuro also told me she coulodnt do anything else for me so i switched neuros and it worked i had the radiofrequency surgery about 3 months ago and it help alot with my occiptial neuralgia and although i do not recommend this without talking to your dentist first i had all of my teeth on the top removed and i have had no more pain at all in that area from the tn i can eat and talk again ever since with no problem but like i said my case may be unique so i would not go running in and do that unless xrays show it may help my nerve ran right along four of my roots so thats why i did it. I have never tried the trylipitol because i have kidney stones and it can increase those so be careful with that if you have had kidney stones in past do not take it. hope some of this helps I know the fears and antisipation all to well hang in there and keep your mind set day by day. and just enjoy the breaks to the fullest when they come - stacey
Wow, Stacey, you really went through a lot. My dentist doesn't know much about TN. When I told him I had it he acknowledged it but I could tell he just remembered it from dental school. So I would NEVER do anything he suggested I do! Yours must be very well versed in the details of this condition. Do you have dentures now? Is it easy to eat with them? I have thought about having no teeth, but I thought the pain came from inside the gums where the nerves are connected to everything - I was in the middle of having implants done when the TN hit me so I am missing 4 teeth on the left upper side (my first offending side). I sure do get a lot of pain in that area, especially in the socket of the last tooth the dental surgeon extracted that initiated the first "knife" that kept striking into that one area enough that I finally called him on a Sunday night for help. I still get most of my pain in that socket, so I am wondering how you having all your upper teeth removed can alleviate the pain? I really am curious because I am here to learn. I am so happy that it worked for you!
Stacey, I didn't know how to answer your private message earlier - I tried clicking on it - I tried everything. Sorry. Maybe you can tell me what I was supposed to do.
Thanks for sharing your story and for caring.
Barb
i had a dentist write me once about a type of tn that actually comes from the socket where a tooth was that sounds more of a match then mine my pain was in the upper jaw so removing the teeth relased the pressure the roots were placing on the nerve it sounds to me like your nerve is actually in the socket which can happen i am sorry i do not remember the name of it but if you contact the trigeminal neuralgia association they may be able to get u in touch with a doctor who has dealt with that type of tn to check because there is a surgery that can releive the pain for that one. I was told never do inplants because it can seriously aggrevate tn so i have dentures i fought for eight months to keep no teeth in at all so i would give my jaw full chance to heal before putting any pressure on it and it worked great i do not have to wear denture cream or anything they fit perfect and i have never had any trouble eating or talking again. but again like i said it is usualy recommended not to remove the teeth so you really need to find a dentist to help that knows what to look for also have them use marcain instead of litocain litocain can fail to work on tn paitents.
as far as the chat box no clue how to use it that was the first time i tried lol so dont worry about it.