Thanks for your input. Every little bit of advice and support helps with this horrible illness. I think the worst of it is that to others you try to look normal. However, in my case, I have lost a lot of weight in the last 3 months, simply because I have not felt like eating and it hurt to eat, so I am starting to look ill. The pain is starting to make me fell sick as well, so that makes me more miserable. We are due to go camping next week for the week, so I hope that the rest and relaxation will help and hope the sun shines a little to help me feel a bit better. Is the pain now mainly in your cheek area or are your teeth still hurting?
Luke said:
Hello Lucy,
Im 31 and have had constant pain in the left cheek for over 3 years now. It is a burning type pain that would bring you to your knees... It feels deep in the tissue and almost stings in nature. The area is also numb in my case, which ive heard is rare with this illness.
How do i cope ? Well medications are paramount ! (see neurologist) You have to keep it at bay with medications ! but then this in turn leaves you with side effects... But this is the better of 2 evils as I can not function without medication as the pain is incredibly strong. If it gets bad I find lying down with my ipod and some soothing music in the dark can help a great deal. You also need to keep things simple by trying not to over complicate things.. By resting your mind you are able to bring your stress levels down which in turn can bring down your pain levels.
I havent found siginifcant relief from acupuncture, osteopath, chinese medicine, trigger point injections, physiotherapy.... but this said some of these might bring your pain down from a 5/10 to a 4/10 and clear your mind a little... I did notice that coming out of a session with the osteopath my mind would feel much clearer (not normal again) but within an hour or 2 it returns back to this state.
Now you also need to give yourself something to do and preferably with someone else, small groups or alone.. I find large groups can be too much ... So find a hobby, something you like, something you are good at and get lost in it a few hours a day or week. This will amazingly start to give you some value in your life and a sense of self worth.. I personal have gotten back into drawing and painting and it does feel good to be producing something tangible :)
Camping !!! yes please !!! hehe have a wonderful time
About my teeth… The teeth that hurt in my case were the upper left molars. I couldnt take a bite of anything without it feeling like i had little daggers shooting up into the area under my eye. Specifically between the 2nd and 3rd from the back. I had root canals done on them, then this didnt work so was sent to a specialist who did the root canals again on the same teeth. This didnt work so I asked the dentisit to rip out the worst of the 2 teeth. I waited 3-4 weeks as they said any swelling etc needs to go down and the pain still hadnt gone down… So i begged him to rip out the other molar and he said that he didnt believe that the pain was coming from the tooth but the did it for me anyways… I had a bridge put in going from the back molar to my incisor tooth across the gap of 2 teeth…
I still dont eat on the left side of my face mainly because it is uncomfortable… but looking back I dont regret having them pulled because they were causing me way too much pain.
Regards looking sick… yes this happens… I use an anti-dark circle cream under my eyes, and on bad days I use eye drops when my eyes are as red as an apple. Also I take vitamin D every day because I dont think I get enough sun.
Enjoy your camping trip ! as much as you can …
Luke
lucylucy said:
Hi Luke
Thanks for your input. Every little bit of advice and support helps with this horrible illness. I think the worst of it is that to others you try to look normal. However, in my case, I have lost a lot of weight in the last 3 months, simply because I have not felt like eating and it hurt to eat, so I am starting to look ill. The pain is starting to make me fell sick as well, so that makes me more miserable. We are due to go camping next week for the week, so I hope that the rest and relaxation will help and hope the sun shines a little to help me feel a bit better. Is the pain now mainly in your cheek area or are your teeth still hurting?
Luke said:
Hello Lucy,
Im 31 and have had constant pain in the left cheek for over 3 years now. It is a burning type pain that would bring you to your knees... It feels deep in the tissue and almost stings in nature. The area is also numb in my case, which ive heard is rare with this illness.
How do i cope ? Well medications are paramount ! (see neurologist) You have to keep it at bay with medications ! but then this in turn leaves you with side effects... But this is the better of 2 evils as I can not function without medication as the pain is incredibly strong. If it gets bad I find lying down with my ipod and some soothing music in the dark can help a great deal. You also need to keep things simple by trying not to over complicate things.. By resting your mind you are able to bring your stress levels down which in turn can bring down your pain levels.
I havent found siginifcant relief from acupuncture, osteopath, chinese medicine, trigger point injections, physiotherapy.... but this said some of these might bring your pain down from a 5/10 to a 4/10 and clear your mind a little... I did notice that coming out of a session with the osteopath my mind would feel much clearer (not normal again) but within an hour or 2 it returns back to this state.
Now you also need to give yourself something to do and preferably with someone else, small groups or alone.. I find large groups can be too much ... So find a hobby, something you like, something you are good at and get lost in it a few hours a day or week. This will amazingly start to give you some value in your life and a sense of self worth.. I personal have gotten back into drawing and painting and it does feel good to be producing something tangible :)
Hi. I have the same problem. My right cheek and upper jaw has this burning, numbing feeling 24 hrs a day. It quite annoying!!! I just wish it would go away. I have not a relief from it yet. I think I am stuck with it!
I know i have irritated nerves on both lower lids and a group of them getting together on my cheek. Also scar tissue involved. I need to have eyelid repairative work done and I have started. I have to lay down, reduce fluid buildup. nothing else works. Theres a line across the palatte of nerve pain. nerve root pain. Do any of you find yourself homebound due to pain.
I've seen your comments on this site and the regular TN support group site. Perhaps you recall reading some of my posts. My name is Paula. It's 1 am and I've been awake because of the pain -- aching, burning, in the side of my face and sharp pains shooting down to my cheek -- and they are constant. I must get 20 or more each hour -- and all this after I had a glycerol injection on June 28. I'm taking 1200 mg of neurontin - but that hasn't touched the pain. I am seeing the neurologist at 9 am today for a follow-up, but he is aware that I am in extreme discomfort. I don't know what to do? Schedule a MVD??? Change meds? Try another procedure. Everything I read about TN or atypical TN is so scary and paints such a gloomy picture of living a life with pain. What does life hold in store for me?
Paula
Richard A. "Red" Lawhern said:
Crystal,
Receding gums can indeed cause generalized pain in the mouth. But as far as I've ever read in medical literature, you shouldn't experience nearly the intensity of either a dental abscess or facial neuropathy from that source. Likewise, it would be very unusual for that type of pain to be felt up in the cheek or elsewhere remote from the gums and teeth.
Your symptoms seem to align with a mixture of TN and ATN. Glycerol rhizotomy can be a useful but relatively short term remedy for some people, but overall it may be the least effective of about six or seven surgical procedures.
You might not see this before you visit with your neuro0logist, but it's possible that his advice will align with mine: (1) you are nowhere near the maximum recommended dose for Neurontin. I would expect a lot of neurologists to recommend that you first be tried on higher dose levels and monitored for side effects as you titrate up. (2) Your doctor might also decide to introduce an additional medication such as amitriptyline, to address the burning, achy, constant component of your pain. (3) MVD is a possibility. But following a glycerol procedure, the odds of successful outcome aren't as good because of the damage that glycerol does to the myelin layer around the nerve. Likewise, a neurosurgeon may want to wait several months for the conditions of inflammation and scarring introduced by glycerol to "settle down" . Meantime, you're going to need medical assistance for the pain levels you're experiencing.
As for your long term prospects, that's a more subtle question, and one that I don't want to trivialize. I know this issue is important for you just as it is for many others. What I can tell you is that it is impossible to predict with any confidence how you will fare -- BUT (and this is an important qualification) a great deal of your quality of life will grow out of your own personal approach to dealing with life and the pain in your life. In the 16+ years I've been talking with patients, I've seen a wide range of outcomes in quality of life. The outcomes extend all the way from nearly total shut-down and withdrawal from life (in fortunately very few patients), all the way up to and including deeply loving and positive engagement in the outer world, with such energy and verve that people are astounded to learn that one has significant pain at all. Obviously, your outcome will be influenced by the course of your disorder. But your pain does need to NOT define you or who your are. Your choices in attitude and approach to pain management profoundly matter.
There is a section in our LwTN "Face Pain Info" page (menu above) that deals with coping and living a positive life. As a starting point, I commend for your reading. Feel free to come back to talk with me and with others here who know the journey from the "inside" as it were.
I think this is a must do article for me. I a,m having a difficult time finding a surgeon to deal with my mess. I try so hard to get out but it doesnt take much for my body bto shut down. When tight muscles release, I shut down. I conk out. The release is painful. The neck compression causes the neuropathy, and muscle tightness. The air conditioning feels wonderful until the musles tighten. It relieves the nerve pain. Warmth will relieve the pain overtime. It could be 24-72 hours. Warmth induces sweating and that will cause nerve pain. So it is a tradeoff. The body will work only so long unti lthe tissue seems to collect with excess fluid or become too tight. None of my procedures has provided me with more tissue-a key problem. Scar tissue on the cheek temple and then jaw-neck clearly does not give me enough room. I cant turn my neck. My neck tightens, my extremities tighten. The irritated nerve roots are having a field day.
My ocular will not be happy that the procedurev did not work. It cost 20,000 outn of pocket and we are not wealthy. Both cheeks are filled with scar tissue and as well as the jaws. I cant leave the house until the pressure recedes.
I try so hard to leave the house, do chores, see a friend and then my body turns on me
It is so hard not to become depressed when you do finally get out of the house and then you wind up with more pain.
i will read the article. It seems you take a baby step foward and then you take 10 back. It is sad..
So sorry you are having such a bad time at the moment. Hang on in there, every day is a new day filled with new possibilities and hope. Who knows what the next new advance will bring.
Best wishes and kind thoughts sent
elaine48 said:
I think this is a must do article for me. I a,m having a difficult time finding a surgeon to deal with my mess. I try so hard to get out but it doesnt take much for my body bto shut down. When tight muscles release, I shut down. I conk out. The release is painful. The neck compression causes the neuropathy, and muscle tightness. The air conditioning feels wonderful until the musles tighten. It relieves the nerve pain. Warmth will relieve the pain overtime. It could be 24-72 hours. Warmth induces sweating and that will cause nerve pain. So it is a tradeoff. The body will work only so long unti lthe tissue seems to collect with excess fluid or become too tight. None of my procedures has provided me with more tissue-a key problem. Scar tissue on the cheek temple and then jaw-neck clearly does not give me enough room. I cant turn my neck. My neck tightens, my extremities tighten. The irritated nerve roots are having a field day.
My ocular will not be happy that the procedurev did not work. It cost 20,000 outn of pocket and we are not wealthy. Both cheeks are filled with scar tissue and as well as the jaws. I cant leave the house until the pressure recedes.
I try so hard to leave the house, do chores, see a friend and then my body turns on me
It is so hard not to become depressed when you do finally get out of the house and then you wind up with more pain.
i will read the article. It seems you take a baby step foward and then you take 10 back. It is sad..
Thank you for my ribbon. It is lovely to think someone so many miles away are sending their best wishes.
Hope you are having a better day. Best wishes.
elaine48 said:
I think this is a must do article for me. I a,m having a difficult time finding a surgeon to deal with my mess. I try so hard to get out but it doesnt take much for my body bto shut down. When tight muscles release, I shut down. I conk out. The release is painful. The neck compression causes the neuropathy, and muscle tightness. The air conditioning feels wonderful until the musles tighten. It relieves the nerve pain. Warmth will relieve the pain overtime. It could be 24-72 hours. Warmth induces sweating and that will cause nerve pain. So it is a tradeoff. The body will work only so long unti lthe tissue seems to collect with excess fluid or become too tight. None of my procedures has provided me with more tissue-a key problem. Scar tissue on the cheek temple and then jaw-neck clearly does not give me enough room. I cant turn my neck. My neck tightens, my extremities tighten. The irritated nerve roots are having a field day.
My ocular will not be happy that the procedurev did not work. It cost 20,000 outn of pocket and we are not wealthy. Both cheeks are filled with scar tissue and as well as the jaws. I cant leave the house until the pressure recedes.
I try so hard to leave the house, do chores, see a friend and then my body turns on me
It is so hard not to become depressed when you do finally get out of the house and then you wind up with more pain.
i will read the article. It seems you take a baby step foward and then you take 10 back. It is sad..
i am working on increasing the neurontin, because tegretol did not seem to do a thing. also im checkin out other pain options. the neck is almost a seperate issue but its causing compressive neuropathy. i cant function with a tissue-muscle shotage.the muscle tightness is a different issue than the nerve pain. i feel so much better when its not compressed. its the worst feeling when the muscles release. it is obvious that the ioght cheek, ear, nape have adhesions. ouch! then there is irritated nerve roots.
i dont know if id be brave enough to try it with all of those side effects. i also have PAD from the muscle tightness. i am exhausted. it doesnt take much to tighten muscles. without a surgeon for reconstruction. i get really scared. where am i going. will it ever improve?
how come you didnt give up on tegretop with all the adverse effects? I dont think you are a pollyonna, but I do face a lot of reconstructive surgery and the neck is very delicate let alone the ears. I am thinkining about a pump if i am a candidate. We do know adhesions are causing the muscle issues and the neck is the source of most of the problems. ITS BEING BEDRIDDEN THAT HURTS THE MOST. I miss living the most.
I talk, but i am not sure they really hear me, its so fustrating. elaine48 said:
how come you didnt give up on tegretop with all the adverse effects? I dont think you are a pollyonna, but I do face a lot of reconstructive surgery and the neck is very delicate let alone the ears. I am thinkining about a pump if i am a candidate. We do know adhesions are causing the muscle issues and the neck is the source of most of the problems. ITS BEING BEDRIDDEN THAT HURTS THE MOST. I miss living the most.
The type of pain you are describing might be Atypical Trigeminal Neuralgia, Lucy. But what you describe is "common" in that variety of pain. In addition to Tegretol or perhaps instead of it, most neurologists would be trying you on tricyclic antidepressant drugs like Amitriptyline, I think. Those meds have a dual anti-depressant and central nervous system quieting action that is often effective against this form of face pain.
A good rule of thumb if you find yourself getting deeply depressed is to TELL SOMEONE in your family circle, and ask for help to find a physician who can provide medication or cognitive therapy support.
I was on amitriptaline a long time ago without neurontin which I am taking 600 mg. again. can they be taken together. It is very drying but effective with depression and a high dose of neurontin caused a major weight gain. so i wont do that again. My dr. never reccommended tegretol. Ido need to sort out these medsas well. My muscle tightness and tissue loss is another ball of wax. If you really believe in peace and power, your stance toward me is quite the opposite. As far as I am concerned its in poor taste as well as some of your comments. I have acquired quite a bit of knowledge about face pain so I can live without your "help" It just sickens me.
As I told you before Lucy, I will be there to listen, not just dish out some mechanical medicine advice. It is essential you take the proper medicine. I will be glad to help . Im a real person that undestands exactly how you feel. Its been 8 long years. Therapy is available. This is very hard to deal with alone. Hopefully noone will criticize your feelings and help is here. compassion is more than a bottle of pills. its an entire package and hopefully you will improve. We are here too help. no cliches.
Richard A. "Red" Lawhern said:
The type of pain you are describing might be Atypical Trigeminal Neuralgia, Lucy. But what you describe is "common" in that variety of pain. In addition to Tegretol or perhaps instead of it, most neurologists would be trying you on tricyclic antidepressant drugs like Amitriptyline, I think. Those meds have a dual anti-depressant and central nervous system quieting action that is often effective against this form of face pain.
A good rule of thumb if you find yourself getting deeply depressed is to TELL SOMEONE in your family circle, and ask for help to find a physician who can provide medication or cognitive therapy support.
Elaine, I realize that in some ways I may have failed you. I do not have solutions to offer for your combination of issues. I do not trivialize your pain and I have real empathy for your frustration, but I don't know how to support you toward better outcomes. You clearly need the aid of one or more physicians who have far more training than I do. I have not meant to be dismissive or trite. But sometimes we are all imperfect, as am I.
I wish you well, Elaine, and I will go on trying to be of aid to others.
I do not expect ypu to have all the answers, noone does. The medical establishment if anyone-plastic surgeons- are the guilty ones. This is not your fault but when physicians make horrendous errors and destroy lives, but do not aid adhesions, tissue loss, and other correctable matters. They destroy human lives and cause great suffering. If this is the American way in medicine, it is very sad. When their godlike stature is diminished, trust me, they do not like it one bit.
It is not only nerve pain. it is compression. If it is not corrected, I am doomed. Just exactly where are these physicians capable of helping. Pretty hard to find. I never expected you to solve my problems. Do not think that all doctors are humanitarians and they like money more than life itself. that is the truth!
No one walks in anyone elses shoes!
This is not about you failing me. Its about a system that fails the patient. They dont care!
You may not be aware of previous statements. always takes in a lot of territory. Lucy is getting support. that is the issue. You look young Luke. Sometimes age brings added wisdom. What affects Lucy, also affects me and others here. There is nothing wrong with a difference in opinion or clarifying issues.
