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Newly ATN diagnosed but unable to confirm

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Old 03-12-2012, 09:55 PM   #1
CJ123
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Default Newly ATN diagnosed but unable to confirm

First, I would like to that those taking the time to read and possibly provide insight.
My story...
June/July 2011 - I would mild toothaches that would last a few hours in my lower right jaw. Dentist found nothing.
Late August 2011 - woke in the middle of the night with severe lower right jaw pain. Convinced it was an abcess tooth I went to the specialist. Nothing could be found
Sept 2011 - all hell broke loose pain wise. Felt like someone was ripping my teeth out. Only think that could me keep me from screaming/crying in pain was ice cold water. I constantly drank wate while waiting in the ER. Dilaudid was given.

Based on what I have read I consider my lucky that my physician diagnosed me early on with Atypical TN and put me on Tegratol. I will go weeks fine and then all hell breaks loose again. The latest attack latest 11 days and 5 trips to the ER.

Occassionally, I will feel the pain start but not flare up to an all out attack. I dont have triggers. Just a tingling sensation at times as well.

I am now going to a neurosurgeon but my MRI scan did not show anything that would warrant the MVD. He says I need to wait until I a unable to continue my daily life and then he may try the balloon compression.

I just am dreading what is to come pain wise. I guess in a way I was hoping that the MRI would have warranted something to be done to end the pain.

Has anyone experienced this type of pain with TN? I just find it weird that I dont get shocks or momentary lapses of pain. Rather, I get persistent stabbing, throbbing pain...

Thanks,
CJ
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Old 03-23-2012, 12:17 AM   #2
BethO2L
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Sorry to hear that you are having problems, all of us here can understand where you are and the fear of where you are going,,,so I have some questions if you feel comfortable enough to answer,,
how old are you, do you have any other medical issues (chronic), did your MD say why he feels the balloon treatment is the best for you or is it just the one he prefers, is it a Neuro? what drugs have you taken and at what doses and what were the side effects?

If you can give us some more info we might be able to give you some insight as to why your being given the direction you are,

That being said,,,Balloon compression is not the "go to" treatment of choice for most MD's so that's why I'm asking. It seems unusual, at this stage if an MVD is not indicated than usually you would be starting on a good drug program, often being more than one drug, that covers the pain before it starts,,that's the goal. You may have occasional breakthrough pain but the goal is to not let it go that far, taking meds on a constant and consistent basis to prevent the pain from happening. I find it curious that this MD is not moving you in that direction.
Next, just because he does not see anything on an MRI,,I get, did they do an MRA (checking the vascular system with a dye or contrast) gives a better look at what's going on. And that an MVD is not indicated what about a gamma knife (not my favorite) or radiofrequency rhizodomy? both are viable and last longer with better results...
It just feels odd without more info about you.

If you haven't gotten it yet, I would invest in "striking back" probably the best book out there on TN, it helps and can be very reassuring.

From the little I have what I would suggest first and foremost is "get a second opinion", the advise you are getting seems old and out dated (unless you have other medical issues) not taking into account your pain and your fears, both of which play a large role in adding to your stress and then adding to your attacks,,so it needs to be addressed and it sounds like this MD is not doing that. Perhaps think about finding another MD that does listen better and deals with your issues.

The chances are you need to be either on a larger dose of medication (to prevent attacks, twinges, ticks etc) or a combination of meds. All of us end up there at one point or another and it does work and for some people depending on the severity of the TN and how quickly it progresses, it may be as far as you need to go. You sound like you are at the beginning of this journey there are still many options out there, don't be so willing to just jump at something that sounds like it will fix it....nothing fixes it, there is no magic pill or procedure. Some things work for some people and not others. I had an MVD early on, it didn't work, that does not mean I tell everyone not to have it, I think it can be a great procedure for the right person but not for everyone.

There are some things you can do to start taking control of your own health and make some significant changes for the better.
A good B complex vitamin, don't just assume the stuff at walmart is as good,,it isn't . Buy the best vitamin you can afford to take,,,
stop using aspartame, MSG, Caffeine and sugars (if possible).
Learn to control your breathing,,,learn to meditate. It doesn't have to be anything off the wall but getting a CD that will teach you simple meditation techniques will help you control stress (always waiting for that shoe to drop, when is the next attack?) control your breathing and learn to relax your muscles all those things can really play a big role in controlling chronic pain,,,this is the one that everyone avoids doing and helps the most!!!

From there give us a bit more info and maybe between myself and some of the other folks here that have lots of experience and ideas, we may be able to point you in a direction to really get you on a good track,,,remember we have all been there and we get it. If you have questions, ask,,someone will have an answer,, if you need help or just need whatever,,we do get it. We can't fix it but we can probably help.

Good luck, we are all here with you. Keep us posted on how things are going,,,, all the best, Beth
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Old 03-30-2012, 03:42 AM   #3
Porcelina
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I have ATN. I have constant pain, a background temple headache and a boring/burning pain in my sinus.
On top of this I get the searing/stabbing/grinding/electric attacks in the sinus where it is like someone has turned a dial up on the pain from a 5/10 to a 10/10. My attacks last a minute or two, I broke my previous long attack record today and had one that lasted 11 minutes. I may have a few attacks a day or I may have blocks of nearly constant attacks for 2 hours at a time.
It sounds like it very well could be ATN.
Do you have altered sensation in your skin on your face? Is there tingling post an attack?
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Old 04-19-2012, 03:31 PM   #4
BethO2L
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For some people it is not uncommon to have numbness and tingling post attack. If you think about it all the nerves in your face are effected, as are the muscles. Everything tenses up and like most of us you are probably clenching your teeth..so it would make sense that you have some kind of after effect.

That's when most of us use some sort of pain med usually an opiate because they work fast and are effective,,unless you have a medical reason to avoid using them don't be afraid to, now is the time to start viewing medications differently. We don't take this stuff to get happy we take it to control pain and that should become your new focus..how to control pain.

If your diagnosis is ATN, then you have to deal with controlling a constant pain as well as our well known "lighting bolts". So if you have issues with taking meds you need to start changing that. Like it or not that is our first line of defense, and for many TN and ATN patients there is no need to go any farther if you can find the correct med or combination of meds that give you enough pain control to have a reasonable quality of life.

As TN patients we no longer look to be pain free we look to be pain controlled. It's not perfect but you can still find a good quality of life..Too many patients give up and give up their lives and most often it is not necessary,,it takes time and the right combination of MD's that become your partners in helping you control this. I have ATN so I speak from experience.

You said you have seen a Neuro,,if you are still having that kind of breakthrough pain you need to evaluate your meds. We all have breakthrough but it should not be that severe,,have you both considered adding another med to work with the Tegretol?? or possibly upping the dose. The real question is does this MD really listen to YOUR concerns or does he talk at you? It's not uncommon,, they do have a tendency to think they are Gods....terrible but true. You need to evaluate if this is the right MD for you.

If you are very comfortable with his performance....I still suggest a second opinion. Perhaps another MD may fit your needs better. I know I mentioned it before but why a Balloon compression,,is there another medical issue that prevents a Gamma Knife? Still not my favorite procedure but has better results than balloon compression. Get online and do your homework on these procedures,,find out the pros and cons, don't rely on your MD to tell you everything...sad but true.

This is the really hard part,,there is no procedure that will guarantee pain relief. I had an MVD and it actually made it worse..it's not uncommon, and please know that I went to a world class Neuro at a top 10 hospital. Not everyone is a good candidate. I am assuming that they did a contrasting MRI so it showed your vascular system as well, so if they can't see somewhere that would indicate (not guarantee) some kind of interaction then perhaps your ATN is not caused by the "normal" reasons.

I have figured out that my ATN is viral based. I saw another Neuro a few years ago hoping that perhaps imaging had gotten better over the years and perhaps I had a better chance at doing an MVD again. He informed me that there is a group of people who develop TN very quickly and they really can find no reason why we get it. I asked him point blank could it be viral based and he said, no one will admit it but between MD's that is their belief as well.

At least he was honest with me...have you been diagnosed with fibromyalgia or chronic fatigiue syndrome?? If so you may have an answer. Or at least another place to start. Let me know on that one I may have other resources for you.

What may end up happening is that instead of continuing with a Neuro you may need to make the move to a pain mgmt MD. But be advised that it needs to be with a major hospital with certified pain MD's (usually anesthesiologists ) because they have the ability to RX meds that your Neuro can't. Their bag of meds and procedures is different, the problem may be that usually to get in as a patient you have had to give a bunch of meds or procedures a try before they will see you....however every place is different so start looking into what you have near you and what your options are for they future.

I've been through it all,,the meds and two major procedures and I made the jump to pain mgmt very early on,,I was lucky to find an MD that was willing to learn more about TN and how to treat me...he's saved my life more than once. But it took time and building a relationship with him I am very grateful to him for all his help over the years. I now have a PNS (see the thread here for PNS) which has made an enormous difference but in the US it is still not FDA approved and is NOT for everyone with ATN. Remember I have been dealing with this for a decade you are just at the beginning of this road, I mention it only because,,there is hope.

This PNS procedure will be approved within the next few years but don't count on it anytime soon for someone who is recently diagnosed,,

I think your best option is to talk with this Neuro and see if either increasing your dose or adding another med is possible. Most TN patients end up on a cocktail of meds because that seems to be the most effective way to treat this....and please explain his reasoning for the Balloon compression,,,,it is really an older procedure and less effective than other options...you don't have to tell what you don't feel comfortable with just something that makes his reasoning more understandable...(thanks it's easier to give input if we understand more).

Remember there are a lot of people here who have been through it all and have great advise and input...keep coming back, we are in this with you. You can also private message anyone if you prefer. Take your B complex!! they help and let us know what we can do to help....Hang in there....Beth
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Old 04-19-2012, 03:44 PM   #5
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Just thought of something...when I was going through a really bad flare up the only thing that worked for me were steroids...I know everyone shy's away from this as an option. However the low dose steroid pack (you take 5 the first day and work your way down) can be very effective in stopping a really bad flare up.

So perhaps that is something to talk over with your Neuro. They are relatively easy on your system,,it's not like taking prednesone,,,,but for some people it can really help. I have found that taking Toradol for a few days can break the pain cycle enough to get me back to normal. Not every MD will be comfortable with that but as I have developed a very good relationship with my pain mgmt MD, he understands that for me these help at extreme times.
I always have some in the house,,just in case. If I have to travel or in case the holidays hit and I am in agony.....talk to him. Perhaps when you have one of your episodes that start to last for days,,this might be something to try to stop it.

I'll keep thinking...
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Old 01-02-2016, 12:45 AM   #6
Wanganui
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Quote:
Originally Posted by BethO2L View Post
Just thought of something...when I was going through a really bad flare up the only thing that worked for me were steroids...I know everyone shy's away from this as an option. However the low dose steroid pack (you take 5 the first day and work your way down) can be very effective in stopping a really bad flare up.

So perhaps that is something to talk over with your Neuro. They are relatively easy on your system,,it's not like taking prednesone,,,,but for some people it can really help. I have found that taking Toradol for a few days can break the pain cycle enough to get me back to normal. Not every MD will be comfortable with that but as I have developed a very good relationship with my pain mgmt MD, he understands that for me these help at extreme times.
I always have some in the house,,just in case. If I have to travel or in case the holidays hit and I am in agony.....talk to him. Perhaps when you have one of your episodes that start to last for days,,this might be something to try to stop it.

I'll keep thinking...
Hello Beth,this is a shot in the dark seeing you posted the above four years ago! I found your post very comforting as I have hit a low for past three months.I have ATN and have had it for 12 years with some remissions,bliss! I have been on many meds but the side effects are too great so have to come off them.The last one was nortripyline,I had such high hopes but got racing heart.Now I'm only on .75 clonazepam ( this keeps me asleep for four it five hours)and 25 mg lyrica which of course is not enough to help with pain.My GP is bewildered.You say the pain management people are my best bet..I have an appt in Feb but was wondering whether to go privately( Im in the UK) to see a neurologist .This costs a lot so need to think carefully whether it would be worthwhile re other med advice.I have had several procedures done, no invasive surgery just blocks ,Botox ...I would appreciate some feedback.I forgot to say I do feel very low and a little panicky even though before I was able to be way more upbeat re this pain even though in pain....I feel stuck with the constant pain...I used to get some pain free days.I also wonder if I need some psychotherapy as I find when I am completely relaxed such as with dear friends and family the pain lessens but I realise I can't live life being completely relaxed and avoiding the normal stresses of life....Thank you!
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Old 01-02-2016, 12:48 AM   #7
Wanganui
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Quote:
Originally Posted by BethO2L View Post
Just thought of something...when I was going through a really bad flare up the only thing that worked for me were steroids...I know everyone shy's away from this as an option. However the low dose steroid pack (you take 5 the first day and work your way down) can be very effective in stopping a really bad flare up.

So perhaps that is something to talk over with your Neuro. They are relatively easy on your system,,it's not like taking prednesone,,,,but for some people it can really help. I have found that taking Toradol for a few days can break the pain cycle enough to get me back to normal. Not every MD will be comfortable with that but as I have developed a very good relationship with my pain mgmt MD, he understands that for me these help at extreme times.
I always have some in the house,,just in case. If I have to travel or in case the holidays hit and I am in agony.....talk to him. Perhaps when you have one of your episodes that start to last for days,,this might be something to try to stop it.

I'll keep thinking...
PS.Im interested in the PNS.Can you please tell me more?
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Old 01-02-2016, 06:51 AM   #8
Vowel Lady
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I have ATN that came after a dental procedure.
I had all sorts of meds and all sorts of bad side effects.
What helped me the most was a specially compounded cream that I rub on my face with Gabapentin, Lidocaine and Capsaicin in it.
Gabapentin is Neurontin.
If you do a search you should be able to see more info. from previous posts.
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Old 06-22-2016, 11:59 AM   #9
Stassi
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Quote:
Originally Posted by Wanganui View Post
PS.Im interested in the PNS.Can you please tell me more?
Hi Wanganui I have had Atypical for 11yrs now, I live in Canada i have a lot of
knowledge about it. you're last post was sometime ago so i'm not sure if you check in here often, i did just join so I'm not sure yet how this all works but if you would like some info from me we sure can talk, i will check back to see if you replied
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