bi-lateral tn.

Replies to This Discussion

Permalink Reply by Liz K. on January 30, 2010 at 8:42pm

Hi Elizabeth,
I'm sorry you are having a bad time. I only occasionally have it on both sides and one might consider almost not having it on the left side in comparison to the right. It was only after I had TN for a few years and when it started getting really bad (before MVD), that I started having pain on the left.
Liz K.

Permalink Reply by Elizabeth on January 31, 2010 at 11:38am

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Liz K. said:

Hi Elizabeth,
I'm sorry you are having a bad time. I only occasionally have it on both sides and one might consider almost not having it on the left side in comparison to the right. It was only after I had TN for a few years and when it started getting really bad (before MVD), that I started having pain on the left.
Liz K.

Permalink Reply by Elizabeth on January 31, 2010 at 11:43am

Hi Liz,

its ok. I'm not so bad. I havent' had to take much medication. I take neurotin for most the time. I don't take it every day. I found a doctor that would allow me to take only when i needed it. It was my belief that sometimes the medication makes things worse. I told him I wanted to know if I was having good days rather than just take it. Some doctors were negative about it but the new neurologist is open minded and he takes neurotin each day. I'm not sure why i can handle the pains but the teeth seem to be my worst enemy now.did you find that the MVD worked and are you pain free from pain now. If not how much pain do you feel. Would you do the surgery again? Did they tell you why you got it on both sides? I hope you don't mind if I ask. I had the lesion on my brain stem, it has gone and i've never had another one. What did your pain feel like on both sides and what points did it hit. thank you.

Permalink Reply by Liz K. on January 31, 2010 at 10:34pm

Elizabeth,
I would have the surgery again. I am not totally pain free but I take less medicine and the pain does not compare. Most days it probably does not register a 1 and prior surgery it was so bad that I would scream at times and I couldn't talk or eat sometimes for a week at a time. My pain was on the right but as the pain got worse my left side started having some pain but very little. On my TN side, the worst pain was a small area on my upper lip, side of nose and tooth. But I had pain all over my face but not as bad as that particular area. When my TN started about 5 years ago, it came under control in one day with tegretol. I had about 4 flareups until one day in Oct 08, it came back and never stopped and continually got worse. I couldn't do anything. I know I called the doc 3 times a week begging for something different. My original pain was in my cheek area right below the eye. Then it migrated to my lip and nose and one tooth which was the worst but still some zaps in the cheek. In the end it didn't matter what part of my face I touched, I could set it off. I also had the stabbing pain without touching my face. Talking, eating, laughing just about anything would trigger pain. Even touching the back of my head could trigger it. I then got the aching pain in between attacks and of course the activity (spasms) without pain. I guess the medicine took care of some of those. I've also read where TN can spread to other areas after some time and mine did. My neuro said it would only get worse and each time that I was in remission, that the remissions would get shorter. And that was true. Most of my relapses were in April and October with October being worse. My pain after surgery has continued to improve with the exception of October/November. I had an increase during that time but now I'm doing well. I take less medicine and overall most days my pain registers one instead of 10 and no relief. I have been very blessed to get this relief. Not everyone does. But I would do the surgery again. My surgeon offered it again 3 months after my surgery (had surgery April 2009) because I didn't have full relief but I opted to wait and see. And I've improved. He said about 6 mths of improvement would be the most I would see but I've continued some improvement past 6 mths.
I hope this helps and that I've answered your questions.
My neuro says that the neurontin and all the seizure medicines need to get into your system and that it takes awhile for them to peak , maybe 3 days. So maybe you should continue to take the medicine every day.
What was done about your brain stem lesion?
I would at least consult a neurosurgeon and then you would know your choices. I fully believe that if Ihad had surgery sooner, then I would not have this pain.

Liz K.

Elizabeth said:

Hi Liz,

its ok. I'm not so bad. I haven't had to take much medication. I take neurotin for most the time. I don't take it every day. I found a doctor that would allow me to take only when i needed it. It was my belief that sometimes the medication makes things worse. I told him I wanted to know if I was having good days rather than just take it. Some doctors were negative about it but the new neurologist is open minded and he takes neurotin each day. I'm not sure why i can handle the pains but the teeth seem to be my worst enemy now.did you find that the MVD worked and are you pain free from pain now. If not how much pain do you feel. Would you do the surgery again? Did they tell you why you got it on both sides? I hope you don't mind if I ask. I had the lesion on my brain stem, it has gone and i've never had another one. What did your pain feel like on both sides and what points did it hit. thank you.

Permalink Reply by Elizabeth on February 1, 2010 at 2:21pm

Liz,
Thank you for sharing your information with me. I'm very happy that the operation worked as well as it has and as long as it has. i hope it continues.
My brain stem lesion was gone in six months. The neurosurgeon did not do anything. He said it was a stroke and then he wasn't gonna do anything for it? We weren't fond of him. He had no answers and was angry about any questions we might have had. his way or nothing. I found a neurologist. He took another MRI w/ contrast and without. He assumed it was not a stroke, possibly MS lesion. They can't classify something as MS without two or more symptoms or lesions. I just had the one lesion. No headaches to speak of really. When it hit, My head hurt so badly with zaps in both sides that the doctor first said it could not be trigeminal neuralgia, she said it only occurs on one side. The neurologist said it can happen on both sides. He tested me about six months later and I've had about three MRIs. They found nothing.
In the last four years I have not become any worse. I seem to have lost memory and I've lost sensory to feeling pain. I can withstand pain is what i think it amounts to. That was on my chart of symptoms that the doctor put down. Lack of sensory feeling pain may not be a bad thing with this disease. I hate the fact I don't remember faces as well as I use to, even with people I have just met. That might be stress too.
I do respect you and the others who have dealt with so much pain. You and the others are an inspiration to me. I thank you for sharing that with me and I'm thrilled your surgery was successful. so many times I read the opposite. If i ever feel worse pain than I do now, I will now be more prepared to get the surgery you had.
I know what you say about the medication is true according to most doctors. I know the doctor said if I took any other medication i would have to take it all the time. Even his nurse warned me that if I take neurotin for six days I need to keep some lower doses to stop taking it. Not to stop cold turkey. I can deal with the pain most days w/out meds. I'm not objecting to people taking medication or my taking medication if needed. I feel as if I can withstand the pain, its quick and it hits me and then its over. The teeth wanting to pull them out is liveable and the pain in the ears sears but hasn't been so severe yet. It probably amounts to being the only control i have over the disease. I know its coming, I know I will gain weight and have side effects from medication if taken all the time. Iknow I might have to have surgery which might not work, but until that time that I have to, I just want to live as If that day isn't going to come and I'm going to beat this disease or live with it on my termsfor now. With everyone on this sites help, I know I have the inspiration to handle it when or if I do get worse. Sincerely, Elizabeth

Permalink Reply by Elizabeth on February 1, 2010 at 3:54pm

Thank you. I'm not happy you too have the memory issue. I'm happy its explainable somewhat.

I never asked you what type of finches you got for Christmas. I saw finches at Petsmart and thought Ro got some finches for a gift. Maybe I did ask and maybe you told me. Thats how badly my mind gets. A girl gave me a BErnese Mountain dog, it had issues but the point being, I saw her again and did not know who she was. Now I normally remember all faces that are attached to animals but lately I can't recall. I use to pride myself on being able to totally recall everything in someones office, I could recall their face to the point I could see it in my head as well as everything in their office months or a year later. Now I'm lucky if i know where I put my purse down. I'm not that old at fifty three.
I probably won't be on for awhile again. My son is buying a home, jim has appointment at end of month to talk about radiation therapy. I'm ok and I hope all of you are ok too. Thank you for all the notes of encouragement.



Ro ~ said:

Hi Elizabeth,
Isn't it amazing how doctors differ? I'm also the same with memory and such. I think the worst part to me is seeing my daughter upset over the happenings.
I called the doc today about a test and the nurse told me she talked to me about it last week.. i had forgotten. This part is one of a few things that bug me the most right now.

Do take care of yourself k? ~ All we can do is do our best yes? :)
Ro~

Permalink Reply by Elizabeth on February 2, 2010 at 6:57pm

Hi Ro,

Let me know if you have the procedure and how you do with it please. When do they want you to have the procedure with gamma knife. I need to reread my book on all the procedures again.
I loved those little birds. I would think they are fascinating to watch and listen to and very calming.
My son will love his new home. Its always a bit scarey in buying a house.
I use to write my letters and understand exactly what I was saying. My Dad wrote and asked me if I ever reread my letters. I did after his comment. Half of what I say when I type isn't a complete sentence or thought. I was so embarrassed once I read some them again.
A little misspelling to me when other people make it makes me think people type really fast and their fingers just missed the keys. I know what they are trying to say most the time anyway. Have a wonderful week and weekend.

Ro ~ said:

I hope this photo shrink to fit. it's a big photo. I had to look it up ~ forgot the name. It's called Double Barred finch.
I'm so sorry you have the memory problems. i do notice the more stress, the worse it gets. if i don't get sleep, it worsens.
Wishing you the best of hopes and with the house. :) Please do keep us posted on the progress and radiation therapy k? my doc wants to do the radiation pulsating gamma knife. It's not doing it that makes me nervous but i've had adverse reactions to radiation etc.

Ever find yourself talking to yourself out loud about how this suxLemons ? ~ It takes me a long time to type because of the deliberate ah heck i forget the word. it's when u have to make a point to think each word before typed or said. even then i miss words etc.

No you aren't old. I'm 51.. you know what's annoying is when someone asks my age and i have to ask my daughter. do take care with any decision you make.

Permalink Reply by Elizabeth on February 3, 2010 at 4:07pm

I'm sorry for your pelvic issue too. Why is it that the government refuses to pay. Do you have governmental health insurance? Its ridiculous that in a procedure in America we must wait to get something done and lay wait for pain before anyone does anything. I have no answer about the health insurance but in a country that was once as great as ours, it seems a shame we cannot have doctors and procedures done at reasonable rates so that Americans don't have to go without needed procedures. I don't know what the answer will be and its very hard to see the ones we care about go without needed procedures because the government has their hand in it. It does seem that since Obama is so much on health care that the government would be more inclined to pay for your procedure. Thats politics and I didn't mean to get on my high horse. I hope and pray if you don't mind the prayer that the government oks your procedure and it goes well. I know you need the procedure, no one wants to cut up and carved on for any reason. It would take one government official to have trigeminal neuralgia and then it would be covered, i'm sure. My prayers are with you. I'm glad the little birds give you peace and they don't hurt you. I wish we could find an answer to this horrible disease. Do you like the doctors in chicago? Are they experts? Best wishes and please keep me posted if or if not the government approves your surgery. My thoughts are with you on the pelvic mass, maybe it isn't anything too serious and just that a group of cells that overproduced.
Sincerely, Elizabeth

Permalink Reply by Laura Hamilton on June 26, 2010 at 5:09pm

I am glad that it has not gotten worse for you other than being in more places. I have it in both sides and one side is not better than the other. During an attack my whole face is involved usually and at times due to my blood pressure getting so high from the pain has set off a full body seizure. I don't have problems per say with my throat. However, I have had issues with my tounge from time to time. I have a few other things that happen that to tell you the truth I believe are secondary or another issue all together. I am curious that because of the lesion is it possible that you will someday be able to get rid of TN?

Permalink Reply by Elizabeth on June 27, 2010 at 8:29am

Its interesting that you suggest that. Due to the nerve damage I will have some pain from those nerves being damaged. About two months ago went back to my neurologist and he said try to take meds each day but they made me get lights in my eyes. I would go completely blind. I had to call my husband in Wal-mart but he was too far away. It made me very afraid. I had to stop the medication and when I did the pain went away again. I have a lot of remission times and I get use to the pain I feel. So I might have the pain I have and it not become like most TN patients. You might be correct in that if it was just a lesion, the pain tn might be easier than most people who have it.
I'm sorry to hear you have full body seizures. Again, it could be from medications like my blindness and lights in my head and eyes and it could be from TN causing other issues. It seems people with TN get fibromylgia and other things like MS that can lead to other problems. I hope you feel better and feel remission. Thank you for responding.

Permalink Reply by Katie on November 8, 2010 at 1:51pm

I have read all your blogs and I, too, have pain on both sides of the face at the same time. I just met with one of my neurologists and he upped my gabapentin (neurontin) to 4200 mg. Have any of you been on this much medication? I feel like I am taking pills constantly. This dosage does take the pain away, but I have to be very careful that I do not take them too close together or I feel stoned and forget what I just did or what I am about to do. I am going for another opinion tomorrow. I have had this pain for 1 year now and the headaches were getting alot worse...never had headaches until the last few months. It has always been in the forehead, cheekbones, teeth, and ear areas. They did 1 MRI on me initially and an MRA, and those both were fine. I have 3 neurologists and none can explain why I have this pain, nor are any of them interested in finding out the cause. I just get pills thrown at me. Should I be content? Or do I try harder to get to the bottom of this? I just feel frustrated! I have 4 kids, the oldest being 5, so it is really hard for me to make dr. appointments and such. I am 31 and just wonder what the future has in store for me. Any advice? Anyone else on this much medicine?

Permalink Reply by Elizabeth on November 8, 2010 at 2:26pm

Hi,
Wow I'm sorry to hear about your pain. I have never ever been on that much mediation. When I take it the most i've taken so far is 600 to 1,200 milligrams a day, and that makes me feel I'm on drugs all the time. It does seem they aren't interested in why we have this. My doctor says, I had a lesion and it killed nerves and in time with no more lesions I might not get worse, i will never get better. I have a MRI every year for five years and no more lesions but still pain continues, like today it was by the eyes. i refused to have another MRI expensive and never find anything at all. I can tell you that yoga tapes help. It helps me to take two advil before I take my medication. You should never be content on a doctor not answering your questions. They don't know what causes TN or bilateral or other TNS for certain, they think its a vein that lays across an artery, some think its your brain has recorded pain and misfires nerves and mimics the pain over and over. A lot of the people i see on here are on more pain medication than I am. More surgeries. For me I refuse to take the medication every day because I fear addiction and taking pain meds each day all day. My doctor and I agree to only take it when needed. the more I take it the less effective it becomes and means harsher meds. a lot of days I sit through the shots of pain so I can keep taking this neurotin. You might end up like me and one day be off the medication on days if you can stand the pain, most can't. I hope the furture is similar to mine and your pain stops, Always ask on here because I haven't found anyone inclduing my husband who gets how bad thepains are especially when they won't stop. Try outside the trigeminal neuralgia bi page, there are so many great people with good advice on here and just sit and read through them. Hope this helps you. It would be hard to have children and have this. I admire your strength.

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