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Old 03-05-2009, 05:36 PM   #1
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would like some advice on my pain

I am 29 and have had pain in my upper teeth for three years. Dentists ruled out all dental issues and so I went to see a neurologist. I tried every known neuro drug with no effects. I had an MVD surgery on my right side followed by glycerol injections and another MVD on the same side. My pain is still present. It feels like I am biting on foil or glass or getting my teeth broken out. Sometimes it just throbs with my heart beat. The cold weather makes it flare up too. I am currently on nortriptyline which is helping with the throbbing pain but nothing else. Does anyone have similar pain and any advice?

 
Old 03-05-2009, 05:48 PM   #2
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Re: would like some advice on my pain

Hello and welcome to the boards. Many here have a wide variety of experiences and can offer lots of support.

Is it possible that it could be sinus related? The roots of your teeth actually go all the way up to the base of your sinuses...Many who get sinus infections will often feel them in their teeth, for example.

Just a wild guess on my part. I hope you are successful in finding the root cause of your pain.

Regards,

Ex

 
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Old 03-05-2009, 09:43 PM   #3
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Re: would like some advice on my pain

I am thinking along the same lines as Ex on this one too. You should see an Ear Nose & Throat doctor to see if it could be your sinuses. I can tell you that I had 2 root canals and there was nothing that showed up on xrays before hand. I just knew for certain that it was the problem so after the 2 root canals were done the pain started to subside. This could also be a possibility. However you would need to see a special dentist called a Periodontist.

Have the doctors tried you on any opiate/opiod pain medications (ie. hydrocodone, oxycodone, morphine, etc.)? There are always options to take when dealing with pain medication but you have to find the right doctor. I hope those suggestions help.

brian

 
Old 03-06-2009, 05:39 AM   #4
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Re: would like some advice on my pain

I'm thinking sinus problems too. Have you had an x-ray or CAT scan of your head? That would show if there is infection present in the sinuses. It's possible to have a chronic sinus infection for years, and sometimes the only obvious symptom is pain. That would be something to easy to either rule in or out pretty quickly.

Tigg.

 
Old 03-06-2009, 05:45 AM   #5
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Re: would like some advice on my pain

My hubby had major mouth pain for years and had been diagnosed with everything from TMJ, root issues within his teeth ( root canals and teeth pulled did not help ). he went to a ENT specialist and it was actually sinus related. He had his sinus cavities scraped out and he has been fine since with minor pain issues compared to before

 
Old 03-06-2009, 09:10 AM   #6
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Re: would like some advice on my pain

I have checked into the sinus thing. My sinus cavity dips really low and my roots are up in them. I checked with a dentist and an endodontist and both said it wasn't my sinuses. I never have sinus pain. Thank you for your recommendations. I know there is an answer out there. I will check into the periodontist and see what they say.

 
Old 03-06-2009, 09:55 AM   #7
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Re: would like some advice on my pain

Hi Poobie - I am sorry to learn of your pain. I have been diagnosed with Trigeminal Neuralgia - I experience facial, scalp and deep ear pain that is nerve related. So, I have a few questions for you:

You have had MVD surgery - did that help the pain? did the nature of the pain change after the surgery? do you experience pain of the electrical, stabbing variety or the burning, crawling type?

Did an MRI show any compressions of the trigeminal nerve? was teflon used to separate the nerve from veins or an artery?

What neuro/anti convulsant meds have you tried? Tegretol, Neurontin, Lamictal? did you experience any relief?

Have you tried any add-on meds to anti convulsants like Klonipin or Baclofen?

Have you ever tried a topical cream that uses a combo of any of these meds along with lidocaine or ketamine?

I now use neurontin and topamax, which is the best drug combo for me so far, along with percocet for pain. I have a compounded cream of carbamazapine, lidocaine and ketamine that I usse on my face. Its wonderful! I also have a prescription for Lidoderm patches which I can cut up and stick over painful areas on my face. Looks a little freaky but its useful in the spring when it is windy and cold (the WORST for my pain) and I cover my face frequently with a nice scarf anyways. Recently I had the terrible experience of my stupid water heater and stupid me not paying attention as I lit the pilot light and the gas ignited directly in my face. I lost a couple inches of hair plus one eyebrow but suffered no actual skin burns - however the nerve pain in my face felt like I had been serioulsy burned. Thank goodness for my lido/keto/tegretol cream.

On another board that I post on I have seen people report different degrees of success with different combos. Unfortunately it takes a lot of trial, error and patience sometimes to get there.

One friend of mine had her diagnosis changed from TN to Atypical Face Pain (not that any of us really care, we just want it to stop!) and gets botox injections every 10-12 weeks all over her face and scalp, the thinking being that it is microscopicly tiny muscle spasms that are triggering the nerve pain and causing her distress. SHe has had really good success with that, as well as getting her insurance to cover it!

I wonder if the reason that Baclofen (anti spasmodic) is useful is because some peoples pain is caused by tiny muscle spasms.

One poster on the other board developed TN type 2 pain (previously known as atypical pain) after her MVD - she is now looking at a diagnosis of trigeminal neuropathy.

Have you checked out the Trigeminal Neuralgia Association? how about the book Striking Back?

please post back and let me know how you are doing

i wish you a nerve pain free day

-Heather

 
Old 03-08-2009, 09:10 AM   #8
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Smile Re: would like some advice on my pain

I too was diagnosed with TN atypical. I do experience stabbing pain like electricity. My pain worsened after surgery. The doctor found 5 places of compression on the nerve. Then another doctor said the first doctor missed some so he went back in and put tephlon in between two more.

I have tried tegretol, neurontin, and lyrica and trileptol. I have not heard of lamictal or klonipin. Really the only medicine that has brought me relief is nortriptoline. It has helped my jaw pain and my throbbing pain-but as of today that is starting to come back. I have tried lidocaine but not ketamine.

Percocet and vicodin don't help at all. I am glad you are experiencing some relief. It is so difficult going through this. I feel as though the doctors can never agree as to what I have they just say the other doctor is wrong. So I am utterly cofused.

I will check into all that you've used with my doctor. May I ask where you live and what doctor you go to. I really am having a hard time trusting any one after 2 failed surgeries and a balloon compression.

Botox huh? Wow I can't believe she gets insurance to cover that. We just did our taxes and last year we spent $25,000 in medical costs for me. I feel like I am draining our family. My husband is soo good to me and we've both learned a lot of patience throught this.

a diagnosis of trigeminal neuropathy was also something a doctor said I had.

I belong to the Trigeminal Neuralgia Association and I have striking back. That is how I found two of my doctors, Dr. Graff-radford and Dr. Linsky. I am presently at cedar sinai in LA with Dr. Graff and while he did put me on the nortriptoline to help, other than that there has been no help, but a lot of high bills for him as my insurance doesn't cover it. I have heard of getting my upper spine adjusted to help but that is expensive too. At this point I don't know what I have or what can help, so I appreciate all you've said to help


thanks Heather!!!

-Heather[/QUOTE]

 
Old 03-09-2009, 04:38 AM   #9
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Re: would like some advice on my pain

Hi Poobie,

Have you thought about seeing a massage therapist? If you aren't familiar with what they do - it's not "spa" type massage, rather it's treatment for pain and muscular problems with massage. The type of massage can be different depending on what your problems are. I know the one I see works on people with TMJ, she mentioned it because when I get stressed I tend to clench and grind my teeth and she has worked on that area for me. A massage therapist could also work on the upper spine area for you. Unfortunatly it's not something most ins will pay for. Sometimes the schools that train massage therapists will have clinics where the advanced students do the massages with a teacher around to supervise, usually they are much cheaper than normal rates. Sometimes they will work in the same office as a chiro and you can get a price break if you see both in the same office. It might be worth trying a time or two - at worst you will be much more relaxed afterwards.

Tigg.

 
Old 03-09-2009, 10:26 AM   #10
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Re: would like some advice on my pain

Hi again Poobie!

sorry for just now replying - the weather here yesterday was so beautiful - I opened the windows and got into a little spring cleaning.

Lets see, in response to your post. How truly awful for you that you have gone through 2 MVD's only to experience such terrible pain afterwards. I must admit, I am sceptical about this surgery, although I know that it does bring relief to some people, recently I have read of people having horrible complications from the surgery, ranging from aseptic menengitis to chronic CSF leaks. Ughh - too bad that this "big guns" surgery isn't simply the end to pain for some people. I know that years ago before the pioneering MVD surgery they used to just destroy the nerve all together - but having read about some peoples experience with anasthesia delorosa I'm not sure I'd go for that either. Is it possible that the surgery has caused other nerve damage in an attempt to alleviate pain from the trigeminal nerve?

Knowing that you have already tried so much makes me think that I am unlikely to have a magic answer for you. You did not say if you had tried the Gamma Knife - Stanford in Palo Alto has a fabulous reputation. I saw a neuro at UCSF and he was probably the most arrogant Doctor I have ever met. I was fortunate enough to be diagnosed by my primary care Doc ( who is the most fabulous knowledgeable Dr ever in my opinion), who sent me to a local neuro to confirm it. He too had absolutely no compassion in his approach, yelled at me as if I was either a.) hard of hearing or b.) a small child with a total lack of understanding. What is it with neuro's? maybe that brain surgeon complex.... I truly wish that I had a really good recommendation for a particular doctor for you - but honestly my PCP is what keeps me from falling apart, and he recognizes his limitations. Anyway, I am sort of in a holding pattern - my med combo seems to keep things resonably stable right now but I think that I live in constant fear of another one of those incapacitating shocks. Most of my pain is local to my upper jaw/cheekbone and deep within my ear. I recently added Topomax, the migraine med which is really just antother anti convulsant to my neurontin.

Do you keep a pain diary? It has helped me to organize my thoughts (and I was super scatter brained when I first started on meds) and gives me something to take to my doctor when I want to discuss whats working/not working. I record what I take meds wise each day, and often give pain scores on the 0-10 scale. Often I think that we as CP sufferers do not even give ourselves enough credit when our pain interferes with our daily lives. Often CP sufferers tend to minimize pain. It sure helps me to reflect on it, and show my Doc what I am dealing with.

Honestly I would howl at the moon naked if I thought that it would make this pain go away. It's so infuriating, so few people suffer with it that its impossible to explain to people what it feels like, and so random in its nature that often I see little cause and effect relationship between what I do that causes it and what I do that helps it. The one thing I do know is that I am dreadaing the spring and the winds up here in Northern CA ( I am about 70 miles north of San Francisco) it was pure hell last year and I walked around in a wooly hat with my face wrapped in a scarf. Lovely

Are you taking any supplements at all? I have been told that B12 is good for nerve pain of all types - they have a super sub lingual that you can get at Trader Joes. I've tried accupunture, sadly with no success ( too bad cause I LOVE accupuncture) but it does help for some people.

Oh, last thing that pops to mind - I live in a heavily forested area of CA - and I have been bitten by multiple ticks and treated for Lyme once. I am going to ask my Dr to test me for the antibodies as Lyme has a tendency to mimic Multiple Sclerosis - and also causes demylination of the nerves so I would like to rule that out. I have heard that the lab IGENEX which is also located in Palo Alto is the ULTIMATE lab for lyme testing. Maybe you could have been bitten by a tick? just a wild, wild guess at trying to find an answer to a wild, wild pain.

Being $25K out of pocket is no fun - I hope that it is at least tax deductable.

I also hope that you find some relief for your pain. Narcotics are often not considered very effective for nerve pain, but I think it's worth trying. My Doc even gave me some sublingual morphine drops that you put the tiniest amount ( I think it was .25 - .50 of 1ml) under the tongue and the relief was almost instant. No waiting for 45 mins for a pill to go through the stomach. I have to admit I was just a little freaked out by the medicaiton and actually gave him the bottle back after using it just a few times (fool!) But perhaps a long acting narcotic that you always have on board could help you manage the pain.

Well, I lurk around here, occasionally making contact with someone who posts to this board who suffers from this terrible pain that we do - If I can be of any help, or you just would like an ear so that you can tell someone, please post back. I'll do my best to support a fellow sufferer as best I can.


-Heather


oh, have your read Full Catastrophe Living by Jon Kabat Zinn on dealing with Chronic Pain? excellent book - love the title

 
Old 03-09-2009, 02:56 PM   #11
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Re: would like some advice on my pain

I know you said that you tried Vicodin and Percocet but have you tried any other narcotic medication like something morphine based (MSContin, Kadian, Avinza) or Dilaudid, Methadone, or the fentanyl patch(Duragesic). There are some options that could be tried. Also I did not see if you had mentioned Lyrica either. It is similar to Neurontin but some people have relief with that even if they had no response to Neurontin. Those are just some options and things to ask the doctor about.

brian

 
Old 03-10-2009, 04:42 PM   #12
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Re: would like some advice on my pain

thanks for writing back. I don't think the surgery affected it one way or another. I have looked into Gamma knife a few times, I just don't want another failed surgery. I just saw my specialist yesterday and his thinking is it's dental. I am sceptical as three doctors saw the compression on the nerve and found it in my head. This doctor said some people have no symptoms but do have the compression and I may be one of those people. So I am really really confused. I feel as though I am being pulled in two very different directions and one way has to give or else I will be pulled apart.

I was keeping a pain diary for awhile, but now it is pretty much the same every day!

I am the same way on windy days. Granted my pain near my jaw is much better since I started nortriptoline but if I go for a run, I have to wear something that covers my face up to my nose. So that sticks, but it's not as bad as when i couldn't have the air conditioning on or I would immediately start having throbbing aching pain in my jaw.

I am taking b12 tablets each day as well as a multi vitamin and glucosomine. I too am looking into acupuncture and an upper cervical adjustment.


sublingual morphine drops??? I will check on those
thank you for openly communicating with me. I feel so alone in this.

 
Old 04-25-2009, 09:36 PM   #13
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Re: would like some advice on my pain

Hi:
I was assaulted in 1988. I was thrown up against a concrete building and woke up after about 10 minutes. I was taken home but did not get medical treatment that night. My head hurt bad and I fell asleep. I slept for the next 30 hours because I had a concussion. I woke up in an ambulance as no one could not wake me up. Once I woke up I had horrible pain in my left ear. It was sharp and constant, I also had pain behind my left ear that felt like throbbing muscle pain. I got to a local hospital who called the police because of the assault. and gave 100 mg of demerol (big mistake) and sent me home. I had a moderate concussion and slept off and on for the next 40 hours. When I had woken up after the 40 hours the pain was still their but worse. I had muscle pain behind the left year that subsided after a year. but I have had a constant sharp pain in my left year for the last 21 years. Every waking moment except for 3 hours when they numbed my facial nerves in 1990. It stopped the pain for 3 hours but also I had no feeling in the lower half of my face. I could not feel my breath or my throat. Obviously, they could not do the block permanent as I would have to be on a feeding tube and a ventilator for the rest of my life. So they had to try to control it by medication. Nothing kills the pain and I have been on everything from Loratab, Tylenol 3 and 4, percocet, duragesic, demoral, secondal and every seizure medicine, antidepressants that supposably helps nerve pain (they don't) to what I am on now which is MS Contin 100 mg. MS Contin is a long lasting morphine. It barely touches the pain. Unfortunately if you have trigeminal neuralgia you will probably need the MS contin or similar drug just to be able to function. There is an operation but it is very dangerous. IF you have this condition, my heart goes out to you as it has basically ruined my life. The pain interferes with your whole life. There is some hope. A new laser surgery has helped some patients to get from that 10 on the pain scale to a 2 or 3 . In some cases it has cured some people. you will need to talk to your doctor about.
In some cases the nerve will repair itself over time, but I would not count on it. good luck dealing with your pain. I hope you have a good pain management Doctor.

Patti

Last edited by patti678; 04-25-2009 at 09:43 PM.

 
Old 04-25-2009, 10:08 PM   #14
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Re: would like some advice on my pain

heather:
Did you get your pain from an illness or was it a trauma? I know exactly how you feel as I have been suffering from the ice pick in my left ear for 21 years now. The neurontin and Topomax did not even help a little bit. My doctor likes to try me on every anti convulsant, anti depressant or migraine medicine that comes out. Other than one of them almost shut down my kidneys there was little to no effect on the nerve pain. What I hate the most is the lectures I get from other doctors when I tell them I am on the MS Contin and MSIR. They act like your a drug addict or that your pain couldn't possiblily be that bad. They usually shut up when I tell them that it is 2 facial nerves that causes the pain and they seem the ice pick that is being constantly put in my left ear and the goes to my left jaw. the "ice pick" is my description of what the pain feels like. I would not wish trigentimal neurolgia on anybody not even my worst enemy. I am sorry you have to pay so much. I filed for social security in 1990 and was approved the first time. Medicare and my husbands military insurance picks up all my bills. My pain meds cost 1000.00 a month alone. I can not take the generic. My insurance pays for everything. You may want to file for it yourself to pay your medical bills. By the way.I was assualted in 1988 and have had the pain ever since.
Patti from Florida

 
Old 04-27-2009, 06:17 PM   #15
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Re: would like some advice on my pain

Thanks for the info patti. I see a new Doctor tomorrow so I will bring this up with him. Sometimes, rather all the time, I feel like no one understands the pain, especially doctors! I can't seem to get a straight answer out of any of them. I am glad I have God in my life because without Him it would be hopeless for me. I depend on Him daily to carry me through the dark times when I am in too much pain to do anything else. Thanks for your advice! Take Care,
Myndi

 
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