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Old 01-10-2005, 05:29 PM   #1
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Phantom tooth pain / Central pain

I have been suffering for a year and a half now from constant pain where my lower left molars used to be. In the course of trying to solve the pain (started following a root canal), the molars there have all been extracted. I have tried various antidepressants, anti-seizure meds, oxycontin, duragesic patches, acupuncture and homeopathic remedies. Nothing even touches the pain, and at times I feel it's going to drive me out of my mind. I'm at a dead-end and don't know what I'm going to do. I can't keep living like this. The doctors say the pain is not actually in my mouth but in the brain - it's misreading the nerve signals or something. Has anyone had any success with this kind of thing? I'm really desperate!

Linda

 
Old 01-11-2005, 06:29 AM   #2
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Re: Phantom tooth pain / Central pain

i just had a quick question linda.did your doc tell you that you actually had central pain syndrome or are they just calling it a type of central pain?I am just asking because actual central pain syndrome is caused by damage to either the thalamic gland located in the brain or thalamic tract in the spinal cord itself.unfortunetly i suffer with central pain syndrome and it really does suck,big time.I have the tract damage due to a spinal cord surgery.The best thing i have tried for my pain(mine is located from the palm of my L hand on up the backside of that arm through the back of the armpit and over both shoulder blades.Owch!)is lidocaine patches But not really doable in your case.Have you been using anbesol at all?Another cream I use is prudoxin? It contains a med called Doxipin? this med also comes in a pill form as well.Is there any possibility that they might be able to go in and cut the nerve?I really do feel for you,I know how excruciating this type of pain can be.I also have developed RSD in my R knee on down through my foot.All of my pain is being caused by rather extensive nerve damage from surgery.somehow my NS managed to also damage my sympathetic nervous system which is what caused the RSD to form,and a huge list of other crap is being caused by that damage as well.

there are many many different types of nerve damage syndromes out there(unforunetly for us)and the treatments for the pain is kind of a hit and miss kind of thing at best.You just have to keep on trying different things until you finally,hopefully find SOMETHING that works for you. i hope this helps you somehow,I just wish I could do more for ya Linda.Hang in there,Marcia
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Old 01-11-2005, 06:51 AM   #3
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Re: Phantom tooth pain / Central pain

No, they haven't called it central pain "syndrome" just that it's a type of central pain, meaning there's nothing wrong at the pain site. I have tried Neurontin. I got up to 1800 mg without any easing of the pain then started having pretty bad side effects, so I tapered off again.

Linda

 
Old 01-11-2005, 09:59 AM   #4
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Re: Phantom tooth pain / Central pain

Hi Linda:

Wow your experience is exactly like mine....rc, extraction, stilll have pain. I'm trying nuerontin right now too. What were the bad side effects you had. I'm only up to 900mg, but afraid to go higher.


Have you ruled out infection in the jaw area where the teeth were? I'm still trying to find out if this is what I have. My MRI's and Cat scans show inflammation in the area. Some Dr's say go in and clean it out, others say leave it alone.

I'm in constant pain, that has now spread throughout my body. It's really depressing. My life has been ruined by this.

Hopefully someday we'll find the answer.

Take Care, Lisa

 
Old 01-11-2005, 10:15 AM   #5
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Re: Phantom tooth pain / Central pain

The first time I took Neurontin within an hour I could hardly hold my head up. It was very scary. I also noticed a strange burning feeling in my mouth, down my throat, even felt like it was in my stomache. That, however, went away, except that the strange burning sensation would return each time I upped the dose. The main thing I noticed was that it didn't make any difference to the pain. Within a day or two of going up to 1800 mg, suddenly everything I ate tasted like pepper and I started having what I would call panic attacks. I immediately started to taper down, but I think I went to quickly and suffered terribly - burning all through my body, sick stomache, shakes, anxiety. It was really awful.

I've had all kinds of tests to rule out infections, etc. This, in fact, has been going on for about eight years. At the beginning, though, it was more of a nuisance that would come and go. It's only been since August 2003 that it's been constant.

I did have what they call a debridement (going in and cleaning everything out), but I believe that was a huge mistake. There was nothing there, and it only stirred up the problem more. At the time, I was already taking narcotic pain relievers, so there was nothing they could give me to relieve the post-surgery pain. I went through a night of hell after that. Unless there's definite proof there's infection, I would advise you to listen to the doctors who say, "leave it alone". I think there's a greater chance of it settling down if you do that.

Linda


Hi Linda:

Wow your experience is exactly like mine....rc, extraction, stilll have pain. I'm trying nuerontin right now too. What were the bad side effects you had. I'm only up to 900mg, but afraid to go higher.


Have you ruled out infection in the jaw area where the teeth were? I'm still trying to find out if this is what I have. My MRI's and Cat scans show inflammation in the area. Some Dr's say go in and clean it out, others say leave it alone.

I'm in constant pain, that has now spread throughout my body. It's really depressing. My life has been ruined by this.

Hopefully someday we'll find the answer.

Take Care, Lisa

 
Old 01-11-2005, 01:37 PM   #6
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Re: Phantom tooth pain / Central pain

Linda,

Terribly sorry for your problem. My history of dealing with a difficult pain management problem is to encourage you to keep trying different approaches till you find something that works with your body and injury. There is likely an approach you have not found yet that will help significantly. You may need to try something again that did not work earlier. Please, just don't loose hope. Keep trying various meds, herbs, etc. From my own experience, I have found that even branded medications with the same narcotic root act differently on my nerve damage. It just took a lot of trial and testing to find the right formula for me.

I can also recommend the Mayo Pain Clinic. It was a God-send for me. They taught me how to manage the pain and live a reasonably normal life. It was expensive, though insurance does cover a lot. But, it was a great decision for me.

Don't give up hope. There are a lot of us out here with like challenges...keep working on this...you will find an answer.

God bless.

 
Old 01-12-2005, 03:55 PM   #7
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Re: Phantom tooth pain / Central pain

Linda:

Wow you're comment about the debridement really hits home. I've had 3 Dr's recommend debridement and 15 say no. My dilemma is how do you know whether or not there is really an infection unless you go in there and check. My MRI's and CT scans do show inflammation.....8 months post extraction. Other ppl I've spoken with say the only way to really know if you have an infection is to go in there and get cultures and a biopsy. I'm just so confused, I don't know what to do. On top of the constant pain I have overall body pain, fatigue and weakness. Sometimes I feel dizzy too.

Now yesterday, I rec'd a prelim dx of lyme disease.....maybe this is causing all the probs.

Can you please write how your probs started, what kind of tests you had and how you finally decided to go forth with debridement.


Thanks, Lisa

 
Old 01-12-2005, 04:24 PM   #8
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Re: Phantom tooth pain / Central pain

My problem started several days after having a root canal. I had sudden severe pain for several hours which then settled to moderate. I went back to the dentist, and she redid the root canal several times which didn't help. I then saw a couple of endodontists who also worked on the tooth to no avail. Then it was suggested, since nothing could be found wrong, that it might be my wisdom teeth. So I had them removed. Still the pain continued, so I had them pull the root canal tooth. Still the pain continued, so they pulled the next molar. It was in pretty bad shape with a huge filling, and it was thought there could be infection smoldering in it that was not visible on x-rays because of the large filling. None of this helped, but the pain seemed to settle down slightly, and I could control it with percocet a couple times a week. This went on for a couple years, then I got pregnant, and the pain completely disappeared the whole time I was pregnant and nursing. Several months after weaning, the pain started to come back, again every few days. Then in the summer of 2003, it became constant. I went to a pain clinic and tried all kinds of tricyclic anti-depressants and anti-seizure meds like neurontin and lamotragine. Everything just made me very sick without touching the pain. I lost 30 lbs and could barely function. Oh, over those years I also had a head CT, MRI and neck CT and MRI as well as a bone scan of the jaw. Then something showed up on a dental x-ray - a kind of shadow around what looked like a root tip left behind. That was when the debridement was suggested. I had that done, and came out of it in utter agony. I was put on high doses of narcotic pain meds, but the pain just kept getting worse and worse as the doses went higher and higher. So I decided to wean myself off everything. It took several very uncomfortable months (to say the least). Surprisingly, the pain subsided back to moderate but still constant. At this point, I am in pain constantly and really don't know where to turn or what to try. Life has become pretty unbearable.

Linda

 
Old 01-12-2005, 07:31 PM   #9
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Re: Phantom tooth pain / Central pain

Linda;

I am sorry to read about your pain. My thoughts are definitely with you.

Our stories are so similar it's almost scary. I also found pain relief while pregnant and for the first 2 years after my son's birth. Then the pain returned...more root canals, apico's and finally extraction and still the pain is here. I've also become debilitated...either by the pain and/or some type of infection. I still don't know what's causing the problems...but I do know I've lost my life as I knew it.

I'm virtually bedbound...so weak and fatigued, I can't even care for my son.

Because of these symptoms, I feel it is some type of an infection...although nothing has shown this to be true yet. However, I've learned that many suffering from chronic osteomyelitis have no obvious symptoms of infection. it's only when they get debrided that the infection is found.

I have also felt better when on abx?!?!

What type of Dr. did your debridement: an oral surgeon or an ent?

Did you feel any relief from the pain post surgery?

Have you been to a pain mgmt specialist....can they cut the nerve in your jaw or do some type of nerve block, how about radio frequency ablation? these are some of the things that have been suggested to me....but I'm still trying to find the cause of the pain?!?!?! Maybe I never will.

Are you able to function on a day to day basis. Is your child still young? are you able to care for him/her.

I wish there were some way for us to get in touch with each other offline to further discuss this.

Warmest regards, Lisa

 
Old 01-12-2005, 07:52 PM   #10
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Re: Phantom tooth pain / Central pain

My debridement was done by one of the best oral surgeons in our area. He found no infection. My daughter is now four. I can function to a point, but everything is an effort. I have to force myself, because I really have lost interest in life. I've been to a hospital pain clinic, but have not been able to tolerate any of the medications they have tried me on. They say, however, not to let anyone touch the area. There is no point in cutting the nerve or anything, because they believe the pain isn't actually at the sight but in the brain. It's my brain mixing up the nerve's signals - hence it's called central pain. Basically, though, it doesn't seem possible to have a definite diagnosis. They have told me they see other people like me. Apparently this happens in 3% of root canals. I wish the dentist had told me that. I would have had the tooth pulled since it was at the back.

Linda

 
Old 01-13-2005, 07:02 AM   #11
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Re: Phantom tooth pain / Central pain

Lisa,

One other thing I thought I should mention. Are you on narcotic pain medications (oxycontin, duragesic, etc.)? I don't know why, but those medications sent my pain through the roof as well as making me weak and tired and nauseated. The higher I went on those, the higher the pain went. It took a couple of months and was very difficult, but after I went off those, the pain went way down. I have been taking 2 - 3 percocet, mainly at night to sleep, but have just decided to stop that too - just to see. It's been a really rough couple of days, but this morning the pain seems less. It's still too soon to tell, though.

The pregnancy thing I think has to hold a key. One of the doctors at the pain clinic told me he's seen several women who have experienced the same disappearance of pain during pregnancy. There has to be something in the brain that changes when you're pregnant. Unfortunately, the doctor said it's still a mystery to them. I would bet they've never really looked at it, however.

Linda

 
Old 01-13-2005, 08:14 PM   #12
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Re: Phantom tooth pain / Central pain

Hi Linda:

UUgh!!! I had the worst day today. I tried to wean off the fentanyl patch (25mg) using my vicodin instead...what a nightmare. I see my pain mgmt doc tomorrow, hopefully he can give me an easier plan for getting off the patch. Unfortunately when they put it on me at the hospital they never discussed the addictive quality of it.

I'm still not sure what to do about the area of jaw by the extraction site. My physical symptoms of sickness all seem to point to infection. One or Two Docs have said that bone can wall of the infection in the jaw and the only way to get it out is through debridement.

I also still have a RC molar in the back...I'm not sure if that's the prob...but I feel reluctant to pull yet another tooth and still have probs.

Yeah, the preg. no pain syndrome is very interesting. Too bad it wasn't being explored more...maybe they could extract these preg. hormones and use them as a pain relif formula.

My son just turned 3. I've had my Mom and MIL here for the past 6 months to care for him. I'm just ruined physically. I hope I can recover from this soon.

We're in the SF Bay Area.....are you in the area. We can create a pain management support group for Mom's of preschoolers : ).

Why don't you want to take take the percocet anymore? I really think it's important for us to stay on top of the pain otherwise it will beat us down to a pulp. So I brutally learned today.

Warmest Regards, Lisa

 
Old 01-14-2005, 06:02 AM   #13
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Re: Phantom tooth pain / Central pain

Hi Lisa,

No, I live a continent away - in Toronto, Ontario, Canada.

I decided to go off all medication at the time I was on the fentanyl patch. At the time, I felt exactly how you describe - sick all the time and pain through the roof. I was bedridden. I came to the conclusion that surely it couldn't be worse off the patch (and the pain specialist also told me nausea was common on the patch and could last months), so I started weaning (I was on 100mg). It was the worst six weeks, and my mother had to move in too to help with the family, but I tell you it was worth it. The pain and sickness improved so much after I got it all out of my system. I'm a very stubborn and determined person, so I probably went at it too quickly, but I just couldn't wait to get it over with. You can really go as slow as you want. The way to get off the patch is to gradually reduce it every other time you change it or you can do it over a longer period. What we did was simply leave some of the backing still on so less of the drug was being absorbed. So to go from 25 mg to 20 mg, just measure 1/5 of the backing and leave it on. You can use medical tape to hold that side down.

As for the percocet, it's just something I have to do before pursuing other things. One pain specialist told me that there is a slight chance that some of the pain could be rebound pain caused by the percocet. That, along with the lessening of symptoms coming off the patch, made me want to see exactly where I am. The only way to do that is to stop all medication and see what happens. Sure, it means a hell of a couple of weeks, but those anti-seizure medications and tricyclic anti-depressants they prescribe for this are hell too. I want to make sure. One of the problems I had before was I would be going on one medication while taking another and weaning off another so that I never knew what was side-effects, what was drugs interacting or what was withdrawal. I ended up in a terrible mess that cost me a year of my life. It's better to go slowly, one drug at a time.

Linda

 
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