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[QUOTE=tryingtofeelgood]Hi Michelle, Ann and Laura,


Hi Trying, yes I have read your story on the dental board. I am so sorry that you have been through so much. I was hoping all the ostemylitis treatments would be the end or your ordeal.

I agree it is not in my mind - I had rarely even been sick in my life before this began and had no stress/anxiety issues. Thankfully my doctors have not been the type that suggest it is "all in my head". But the theory is that chronic pain can affect our chemical make-up - putting us in a state of adrenaline overload (the classic "flight" response form the caveman days) thus these drugs to fight adrenaline and increase serotonin. And the Neurontin is supposed to stop the misfiring of the nerves. Are the Lexapro and Ativan (Lorazapam) helping you?- how long have you been on them? - that is what I am taking as well. Though I just started the Lexapro. I was on the Neurontin alone first but that isn't enough apparently. How about the massage therapy? I am supposed to be getting a prescription for that soon. My pain also is sometimes in my neck and shoulders though my doctor did not say it was referred, he said it was a separate condition from clenching/and or tension. Do you find anything increases or decreases your pain? Have you tried moist heat? That gluten free diet sounds very difficult. I wonder about that as why would I suddenly become allergic to something right after dental trauma?

I like your comment it has been "deduced" that you have neuropathy. It's like how do they know for sure-that is what is causing me worry sometimes-are they missing something? It's not like they ran any tests to prove it. Yet my neurologist remains absolutely positive this is what it is.

I saw your question on your other posts on websites to get more information.
We can't really list them on this site but searches on trigeminal neuralgia and atypical facial pain should get you started. I will look at my notes and see what helpful things I can convey as I have already researched this a lot.

Take care, keep us posted. This is indeed a strange maddening thing we have and hopefully we can learn from/support each other.
[QUOTE=Ann123][QUOTE=tryingtofeelgood]Hi Michelle, Ann and Laura,


Hi Trying, yes I have read your story on the dental board. I am so sorry that you have been through so much. I was hoping all the ostemylitis treatments would be the end or your ordeal.

I agree it is not in my mind - I had rarely even been sick in my life before this began and had no stress/anxiety issues. Thankfully my doctors have not been the type that suggest it is "all in my head". But the theory is that chronic pain can affect our chemical make-up - putting us in a state of adrenaline overload (the classic "flight" response form the caveman days) thus these drugs to fight adrenaline and increase serotonin. And the Neurontin is supposed to stop the misfiring of the nerves. Are the Lexapro and Ativan (Lorazapam) helping you?- how long have you been on them? - that is what I am taking as well. Though I just started the Lexapro. I was on the Neurontin alone first but that isn't enough apparently. How about the massage therapy? I am supposed to be getting a prescription for that soon. My pain also is sometimes in my neck and shoulders though my doctor did not say it was referred, he said it was a separate condition from clenching/and or tension. Do you find anything increases or decreases your pain? Have you tried moist heat? That gluten free diet sounds very difficult. I wonder about that as why would I suddenly become allergic to something right after dental trauma?

I like your comment it has been "deduced" that you have neuropathy. It's like how do they know for sure-that is what is causing me worry sometimes-are they missing something? It's not like they ran any tests to prove it. Yet my neurologist remains absolutely positive this is what it is.

I saw your question on your other posts on websites to get more information.
We can't really list them on this site but searches on trigeminal neuralgia and atypical facial pain should get you started. I will look at my notes and see what helpful things I can convey as I have already researched this a lot.

Take care, keep us posted. This is indeed a strange maddening thing we have and hopefully we can learn from/support each other.[/QUOTE]


Hi Ann,

Thanks so much for your kind reply. I was also hoping the osteomyelitis was the end of my ordeal. It was not to be and now it is what it is. It is not good, so I will have to do what I can to help make it better. I have things to do in this lifetime! A lot of things! :blob_fire: ! OK, better now.

Yes, the neurontin is supposed to help with the nerves firing correctly. I did not know about Lexapro as being used for neuropathy. I happen to really like this medication. I have no side effects, well I've put a few pounds on, but I'll take that. The first week I was on it, I had terrible headaches and nausea. Now, nothing. I find myself less depressed and able to shake anxiety and depression quicker -which means less stress and utlimately, less pain. This is a good thing. I have been on it for a year or so now. Ask anything you wish, if you have more questions. I do know the seratonin levels are important - especially when nerves are concerned. The Ativan was prescribed to me 1 year ago when I was unable to take pain meds and having horrible withdrawal from morphine. I've been on it since. It is addictive, and hard to come off of, but I am not addicted- however, i don't intend to come off of it anytime soon, unless Yoga is a miraculous thing - and I can handle the gluten free diet. I wonder if it is for "all" types of neuropathy, particularly facial. I do not clench my teeth any more/less than I did pre-Lexapro. It's a rare thing. I know you are a clencher - I'd still give it a try.

I use moist heat on my neck - never at the site. I don't go near my site - and I think that is the thing that keeps the pain down. That, and not talking, moving my face, wearing a bite plate (bite has shifted from surgeries and bone removal) and smiling. So now people think I am a bit^*, which I am not. I also have no front tooth so public smiling is out of the question anyhow ;) Not really - I'm over it., well sort of.

I too have not been ill before. I wonder if you have a lawsuit going? If OK to ask. I hope to continue our discussions. I appreciate any information you are able to post here. I wish we were able to email with each other. It makes no sense. The moderators must be very afraid of the competition, and they don't need to be. This site is hot - a lot of hits are made here first and people always come back. Anyhow, I wish you peace.

In health, Randi
[QUOTE=Michelle W]Hi Ann,

As far as my symptoms go I started out eight weeks post op with a throbbing in front of my right ear. I knew immediately that something was very wrong. It wasn't at all like the TMJD dislocation pain I had prior to surgery, so I knew it couldn't be good. My OS and orthodontist thought I just needed my splint that I now wear adjusted. My teeth/bite has been really altered since they put the disc back in place. I have to have braces now to try and get my teeth to meet correctly. Anyway, for several months both doctors just told me it was a matter of adjusting the splint I wear. My throbbing turned to burning and it became more and more frequent during the day and then everyday. That is why I posted my orginal question if nerve pain becomes worse if not treated, because I wonder if I had treated my nerve pain early on if it would not of progressed.

Right now my burning is mainly in front of my left ear and down inside my ear. It is getting much better since I have been on the Neurontin 3 months, and I have taken the Keppra almost two months. I do have muscle spasms in the front of my left side of my neck and in my left shoulder. I took some Skelaxin from the neurologist initially, but it didn't seem to help much. I plain to try it again since I have a script for it. I am just waiting until pay day on Friday.

I was pulling my hair out in November waiting for my appt with the neurologist at the first of December. I didn't know if I would live to see Christmas.

I basically diagnosed myself from literature I read such as medical books, internet articles, and the tmjd board here. I had to go in my OS office and disagree with him as to why I was having problems. It is very hard to disagree with your surgeon.

Although the pain is much more bearable, I do not have relief from my symptoms. They are still present. I am hoping with time maybe I can get better and better. I feel like my symptoms are so bad I can't imagine my body being able to repair itself. I hope that makes sense. I think that would be a miracle.

Do any of you know if there is any test to definitely test your for nerve damage or does it basically just go on your symptoms?

Thanks,
Michelle[/QUOTE]

Hi Michelle,
Yeah your pain pattern sounds very much like mine. Just mine is in a lower back tooth and radiates out to lower jaw. Yours sounds like the middle third of the trigeminal nerve, mine the lower third. I actually thought it was insane that a toothache was not an infection, cavity, -I have since read that neuralgia are often in the tooth. Don't know if not treating it made it worse but mine was sort of bad, then I was crazed - now with Nerontin no longer crazed, definitely not comfortable though. Sometimes an MRI can see nerve issues - however it can also miss it. I've also read testing with certain anesthetic injections and if that relieves the pain they conclude it is nerve damage. I have read that all other possibilities should be investigated and ruled out. I have also read that if the pain stays very localized it is indicative that it is a nerve problem. Like yours stays mostly in your ear, mine mostly in your tooth. I'd love a test though to prove it. I hate relying on my description of the symptoms. And there is fear of a tooth infection they can't see or in your case an ear infection.
Yes it makes sense that you can't imagine your body repairing at this point.
You're right, it is going to take time. Quite a bit of it, I'm afraid.
Stay positive,
Ann





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