One year ago today I was diagnosed with my TN, 4 days after the birth of my second child. I wish I could say it has gotten easier or that my pain was controlled but its not. I have been stuck with a dr who dosnt understand my pain, he will not try anything but carbazapime and refuses to write me anything for breakthrough pain, well he actually treats me like a pill addict even though in the one year I have only asked for the pain medication once. My most recent visit was a week ago, he said nothing over the counter would help control my pain but he wasnt getting into writing a bunch of narcotics I love the fact that my pill addict mother in law has a regular prescription to treat her addiction and if I have an episode so bad im begging my husband to kill me I have to go to the ER to get a 2 day supply of medication and just pray that the worst is over before the meds are gone. I just feel hopeless, I cant do it anymore. I work 40 hours a week, go to school 15 hours a week, have two young children, and am the sole caregiver of my bipolar spouse who is so bad off mentally right now its like having another child. I am only 25 how am I suppose to do this for the rest of my life how am I going to make it. I cringe of the thought of walking outside if I see the wind whipping, I lay awake at night begging God to heal me, I cry when no one is around, and it takes everything in me to carry on with my life like its normal when that is the farthest from the truth. The only person that can help me is my dr and he wont. He acts like I have a scratch on my finger, he even asked me if my "headaches" have gone away. I just want to give up, throw my towel in, and curl up in a ball and die. I have never been depressed in my life but this disease has taken it all from me. I look back at the post I made a year ago and nothing has changed I have gotten nowhere. I have lost so much hope in dr's that I feel it is useless to go somewhere else. Why go so I can get someone else that looks at me like im crazy when I sit across from them bawling my eyes when I explain my pain because it has debilitated my life. I guess I just need words of encouragement because I have none left for myself. To hell with this disease and screw it for stealing everything I had going for me in life. I am 2 semesters from graduating with 2 bachelor degrees and I cant even be happy about that, because how am I going to start a career with my degrees when I can hardly hold on to the job I have now :/
Oh sweetie hang on I know its hard!! I have type 2 pain also im 31 i unfortunately had to quit my job of 10 yrs everything you wrote was so brave!! I've done alot of research and find it very strange you are the 3rd person ive read about having a baby and then getting tn right after i can't help but think theres a connection with that! Especially since it seems alot more women have this then men maybe it has something to do with hormones. You mentioned headaches thats the worst of my symptoms i get this migraine headache that is relentless especially in the beggining then i started doing chiropractic and it helped to keep the headaches and burning in my face away i only went twenty sessions then couldn't afford it anymore and the pain came flooding back in so they couldn't cure me but kept me out of some pain. after that i stay a neuro that put me on nortripyline its a tricylic anti depressent im at 75 mg. it has helped with the sharp pains crushing, and crawling feelings i still have like a backround headachey feeling and maybe once a week i still get the bad migraine headache. I read on the faciall pain association that tricylic anti depressents are better for type 2 pain. I personally tried the anti -sez meds and they had a adverse reaction for me so it was short lived. I'd love to talk to ya some more and offer my support and friendship I hope you can get relief soon I would seriously change doctors though im still on the search for a good one myself!
please please, tell me you are able to get another doctor. There is no reason for you to be suffering like this.
Why are you stuck with him? Is that idiot a neurologist?
If so, ask your primary doctor , your dentist, anybody to call you in prescription lidocaine patches or cream. Topical relief within minutes for many!
Narcotics usually only help for a little while.
Are you even near a proper dose of med?
You need a neurologist with TN patients AND TN patience!!!!!
Have you read "Striking Back" by Dr. Ken Casey?
Has hundreds of important bits of information and treatment options in it!!!
Is there somebody you could see about getting on an antidepressant perhaps for a few months?
SOOOO many of us on here have had to use them off and on.
Have you checked the doctors tab above of ones we like?
Here are some links to groups you may want to just read or join in----I dug them up in the groups tab above
Topical Cream Group : http://www.livingwithtn.org/group/topical-cream-for-tn
TN patients in their 20's : http://www.livingwithtn.org/group/fortnpatientsintheir20s
Depression and TN/ATN: http://www.livingwithtn.org/group/depressionandtn
Lastly my own posting on grieving TN -- Many people have really needed it:
I hope I didn't overwhelm you.... you can come back and break it down - or message me
Keep posting and we'll help as we are able : )
He is my primary dr, I cant afford our only local neurologist :( He did agree to give me a referral to a pain specialist who knows a lot about tn, but was very nasty about it and pretty much told me there was nothing he could do other than prescribe me the same thing he is. I have researched and researched, told him options I have seen of med combos and he just brushes me off. I have no insurance and I feel so stuck because every specialist I check into would take the diapers off my child's bottom and the food out of their mouth ( and no there is no assistance for me I have checked into every option) . I have been so desperate I have sprayed throat spray in the whole inside of the right side of my mouth and rubbed orajel on my face to try to make it through work and all of the talking I have to do while im there. I take 800 mg's of carbazapime and he said I can take an extra if I need it. He just dosnt understand why I would still have any pain with the meds. I asked him had ever heard of breakthrough pain, and told him if there was some magic pill that took all the pain away there wouldnt be a support group with 1,000's of people in desperate pain. Im exhausted from the fight of trying to get help and not finding it anywhere.
Kc Dancer Kc said:
please please, tell me you are able to get another doctor. There is no reason for you to be suffering like this.
Why are you stuck with him? Is that idiot a neurologist?
If so, ask your primary doctor , your dentist, anybody to call you in prescription lidocaine patches or cream. Topical relief within minutes for many!
Narcotics usually only help for a little while.
Are you even near a proper dose of med?
You need a neurologist with TN patients AND TN patience!!!!!
Have you read "Striking Back" by Dr. Ken Casey?
Has hundreds of important bits of information and treatment options in it!!!
Is there somebody you could see about getting on an antidepressant perhaps for a few months?
SOOOO many of us on here have had to use them off and on.
Have you checked the doctors tab above of ones we like?
Here are some links to groups you may want to just read or join in----I dug them up in the groups tab above
Topical Cream Group : http://www.livingwithtn.org/group/topical-cream-for-tn
TN patients in their 20's : http://www.livingwithtn.org/group/fortnpatientsintheir20s
Depression and TN/ATN: http://www.livingwithtn.org/group/depressionandtn
Lastly my own posting on grieving TN -- Many people have really needed it:
http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...
I hope I didn't overwhelm you.... you can come back and break it down - or message me
Keep posting and we'll help as we are able : )
The baby thing is interesting, my pain started during the last trimester and just went full blown by the end of my pregnancy.
jstagrl29 said:
Oh sweetie hang on I know its hard!! I have type 2 pain also im 31 i unfortunately had to quit my job of 10 yrs everything you wrote was so brave!! I've done alot of research and find it very strange you are the 3rd person ive read about having a baby and then getting tn right after i can't help but think theres a connection with that! Especially since it seems alot more women have this then men maybe it has something to do with hormones. You mentioned headaches thats the worst of my symptoms i get this migraine headache that is relentless especially in the beggining then i started doing chiropractic and it helped to keep the headaches and burning in my face away i only went twenty sessions then couldn't afford it anymore and the pain came flooding back in so they couldn't cure me but kept me out of some pain. after that i stay a neuro that put me on nortripyline its a tricylic anti depressent im at 75 mg. it has helped with the sharp pains crushing, and crawling feelings i still have like a backround headachey feeling and maybe once a week i still get the bad migraine headache. I read on the faciall pain association that tricylic anti depressents are better for type 2 pain. I personally tried the anti -sez meds and they had a adverse reaction for me so it was short lived. I'd love to talk to ya some more and offer my support and friendship I hope you can get relief soon I would seriously change doctors though im still on the search for a good one myself!
You have a really tough situation there with everything, especially with such young children to care for when you have so much pain. It sounds overwhelming. Do you have access to a counsellor at your college or university who can help you make a plan, or help you go through the list Kc Dancer spelled out?
Do you feel safe enough to take the extra carbamazepine for some relief tonight?
Hang in, you’re in my thoughts.
I take an extra one and its like taking a tic tac lol. The worst part of it all is the suffering my children endure. To watch the disappointment on my daughters face when I cant take her to the park because the wind is going to kill me, or my one year old wants to play and I cant even stand to open my mouth. I am robbing my children of their mother and I dont want too, I just cant help it. I have went through that list in the very beginning of this journey and it was helpful, the closet dr to me on the dr list is 4 1/2 hours away, read the book but my dr wont listen, done it all. I think I need to take some happy pills for awhile until the pain subsides a little ;) Told the dr I was depressed and he said it was the lack of sleep and I needed to get more, I told him I dont sleep because Icant fall asleep with the pain. If I could fall asleep then id be pain free because once im out for some reason I dont feel it anymore. I am thinking about going to therapy or something so I can whine to someone other than my husband who is probably sick of listening to me after a daily cry fest for a year.....poor man. I have to put up with his bipolar and he as to put up with my tn....we are a match made in heaven :p
Bellalarke said:
You have a really tough situation there with everything, especially with such young children to care for when you have so much pain. It sounds overwhelming. Do you have access to a counsellor at your college or university who can help you make a plan, or help you go through the list Kc Dancer spelled out?
Do you feel safe enough to take the extra carbamazepine for some relief tonight?
Hang in, you're in my thoughts.
PS KC dancer I loved your grieving post. I did have to laugh at myself though because I bounce all over the stages. One minute I have accepted it and am positive, the next minute im back in denial swearing I must be misdiagnosed, then next thing I know im angry, then depressed, then back to everything is going to be a ok. Im a mess :)
I understand about the lack of sleep, especially with the kids. Have you asked about sleep aid? I’ve been taking medication to sleep every night for over three years. I can’t have the back of my head touch anything without immediate burning/stinging/pressure/, and the ATN is positional as well, so lying down on my side is out too! If I can find just the right moment I will sleep into sometimes 5 hours straight and then go back for another couple or even more if I am lucky and it makes all the difference in the world. I have a bit of pain free time when I wake up.
So sleeping pills work for me but I can see that with kids that could be problematic.
Does it help at all to wear several layers of hats and some kind of fleece bandana over you face. My heart goes out to your sadness not being able to take the kids out.
It would be wonderful if you could find someone where you are to sit and talk about all this.
Having a bipolar husband sounds more of a handful than the kids!
I go back and forth too…in those rare moments when all is quiet in my head and throat for a few minutes and i think, oh! its gone! then the varieties pain arrive in sequence, sometimes all together, what I call the whole orchestra and I am undone again!
Well, you sound like a mess tonight but a mess can always be sorted with time and care. Try to get some sleep.
Heather, you have a lot to bear even if you did not have TN, you are not superwoman you are you, mom, caregiver and pain feeler. you are entitled to feel down. However we both know that will not solve the problem. Your only hope is good medical care from your Dr. It's a long shot but, do you think he would read a letter from Red? He is on vac just now but I feel sure he would draft something for you if you ask. try to stay strong and I pray you find help soon.
Hi heather, (((( hugs ))))
So many of us can relate to your post. Your personal thoughts and feelings are so honest and unfortunately shared by many of us.
You definitely need to change doctors, at this point a year in, you should have way more support from a doctor. When I was first diagnosed I was given Tegretol, but eventually my doctor recommended the slow release form of Tegretol, and at 800mg of that I was pain free and functioning. On regular Tegretol I was still suffering.
600-1200mg Tegretol is usually where you’ll find relief, so if 800mg is not helping, you might need to add another pill or two, change to the slow release or add baclofen to boost the Tegretol or start a new med.
Your doctor and neuros reluctance to “help” you shows disrespect and an obvious lack of understanding and knowledge of TN.
I’m not familiar with the whole insurance and doctors in the USA but can you go to an ER? Or do you have walk in clinics? Maybe there someone can help you?
Do you have any family or friends, church or community help you can take advantage of?
We all need time to ourselves and a break from the demands of life, but especially when we’re dealing with pain.
In any event know you’re not alone, please come here often for support and encouragement, we all rely on one another. I wish I had more to offer, but please know I’m keeping you close in my thoughts and hoping you find relief soon.
Mimi xx
Hi Heather,
The pain takes us all to a very lonely land. But you are not alone. We are all there with you.
I read your discussion concerning the pain specialist--that this is the only referral your doctor is willing to make. What I understood from it is that you might feel hesitant to go because your doctor characterized the person as having the same knowledge of TN as himself. I imagine it would be so hard to go another place and get the same reaction as your doctor's--this is so understandable. But I couldn't help but wonder if your doctor is as wrong about the pain specialist as he is about everything else? Perhaps there is information about the pain specialist online? There is a "health grade" website. Health Professionals who have had patients complete surveys about them on this website are graded. In fact, you could grade your own doctor anonymously and thereby warn other people about him/her.
I echo other's suggestions. I need the help of all the medicine I can get, including anti-depressants.
It sometimes helps for me to think of myself as a warrior in training. That all this pain is testing the warrior spirit in me. But, truthfully, many times I am just sick of the warrior crap and I just want the pain to go away, even if it means I go away with it. But I wake up the next morning and the people who love me are near. If I left them, the hurt would be worse than their seeing me in pain. And so, they must watch me in my warrior training--the times I take it up, and the times I have to let it fall for awhile and just cry. They get to know how one becomes a warrior. Perhaps, they will need that sometime in their lives. I hope not. But just in case, they will know the terrain because of my own practice.
A big bow to you brave Heather, fellow warrior.
Marie
Well I have taken on today with a better attitude :) I guess I just needed to blow up for the whole public forum to see and get it off my chest, because honestly I know everyone in my life is tired of hearing it and I cant always be truthful. @ Marie I think you may be right about my GP, I almost felt he was being rude and defensive because I wanted to go see someone else because I know this disease is over his head. @ mimi I have broke down and went to the ER 3 times in the last year for pain control because when I call my dr he tells me to take an ibuprofen and sometimes ibuprofen will not kill the pain. I actually would have never been properly diagnose if it wasnt for the ER, they are the ones who finally properly diagnosed me. I know it will get better and there are so many more options, but I have to find a dr who is willing to fight this battle with me, not just take my money and feed me the same line of bull I have heard every time I go in.
God bless you! You have so much on your plate right now. I don't see how you do it. I too work 40 hours a week and deal with a 26 year old bi-polar daughter. She and her son live with me and my husband. There is NO way I could go to school too! These meds (carbamazepine 1200mg a day) make me soooooooooooo tired all the time. I think you need to go to a neurosurgeon and see where you can go from there. Remember, those doctors work for YOU! Fire his ass if he isn't treating you right. My doc hasn't given me anything for breakthrough either. My family doc was increasing my meds and then this last bad attack & increase, she sent me to a neurosurgeon. I haven't had a bad breakthrough with him yet. But he told me when my meds no longer work, then we are doing the MVD and he said if the surgery is too far off and I need immediate relief, he will do the glycerol rhizotomy to get me immediate relief until the MVD.
Also, check around and see if a neuro is willing to take your case on with little payment.
mommyheather said:
Well I have taken on today with a better attitude :) I guess I just needed to blow up for the whole public forum to see and get it off my chest, because honestly I know everyone in my life is tired of hearing it and I cant always be truthful. @ Marie I think you may be right about my GP, I almost felt he was being rude and defensive because I wanted to go see someone else because I know this disease is over his head. @ mimi I have broke down and went to the ER 3 times in the last year for pain control because when I call my dr he tells me to take an ibuprofen and sometimes ibuprofen will not kill the pain. I actually would have never been properly diagnose if it wasnt for the ER, they are the ones who finally properly diagnosed me. I know it will get better and there are so many more options, but I have to find a dr who is willing to fight this battle with me, not just take my money and feed me the same line of bull I have heard every time I go in.
Hi Heather
Great to hear you are finding some strength today. Do you have someone you can take with you when you find a new doctor?
Bella
You Go!
mommyheather said:
Well I have taken on today with a better attitude :) I guess I just needed to blow up for the whole public forum to see and get it off my chest, because honestly I know everyone in my life is tired of hearing it and I cant always be truthful. @ Marie I think you may be right about my GP, I almost felt he was being rude and defensive because I wanted to go see someone else because I know this disease is over his head. @ mimi I have broke down and went to the ER 3 times in the last year for pain control because when I call my dr he tells me to take an ibuprofen and sometimes ibuprofen will not kill the pain. I actually would have never been properly diagnose if it wasnt for the ER, they are the ones who finally properly diagnosed me. I know it will get better and there are so many more options, but I have to find a dr who is willing to fight this battle with me, not just take my money and feed me the same line of bull I have heard every time I go in.
Hi Marie, I really get what you’re saying about the warrior training. Warriors need other warriors with them along the path…and sometimes it does just sound like crap.
Bella
Marie said:
Hi Heather,
The pain takes us all to a very lonely land. But you are not alone. We are all there with you.
I read your discussion concerning the pain specialist–that this is the only referral your doctor is willing to make. What I understood from it is that you might feel hesitant to go because your doctor characterized the person as having the same knowledge of TN as himself. I imagine it would be so hard to go another place and get the same reaction as your doctor’s–this is so understandable. But I couldn’t help but wonder if your doctor is as wrong about the pain specialist as he is about everything else? Perhaps there is information about the pain specialist online? There is a “health grade” website. Health Professionals who have had patients complete surveys about them on this website are graded. In fact, you could grade your own doctor anonymously and thereby warn other people about him/her.
I echo other’s suggestions. I need the help of all the medicine I can get, including anti-depressants.
It sometimes helps for me to think of myself as a warrior in training. That all this pain is testing the warrior spirit in me. But, truthfully, many times I am just sick of the warrior crap and I just want the pain to go away, even if it means I go away with it. But I wake up the next morning and the people who love me are near. If I left them, the hurt would be worse than their seeing me in pain. And so, they must watch me in my warrior training–the times I take it up, and the times I have to let it fall for awhile and just cry. They get to know how one becomes a warrior. Perhaps, they will need that sometime in their lives. I hope not. But just in case, they will know the terrain because of my own practice.
A big bow to you brave Heather, fellow warrior.
Marie