Join Date: Dec 2007
Lots of questions and not (maybe) all the answers.
First, if her MD suspects that she has TN they should do an MRI/MVA (MVA is the contrasting part and it looks at the vascular system). They are doing it to rule out tumors and MS (multiple Sclerosis ). This is very important because should she have MS then the treatment is different..However unless over the last few years she has been having other symptoms (hands shaking, leg weakness) is it unlikely that she has it.
Most patients have MS and then develop TN,,MS creates lesions on the nerves which can then happen on the TN nerve,,,,so that's probably not what you are looking at,,,but get the MRI done....it's important to do.
Next is she seeing a regular MD or has she been referred to a Neurologist??? My personal opinion is see the Neuro...A regular MD will not be as up to date on the newest medications and their doseages. I have heard too many people suffer for too long because regular MD says "well that's as much as you can take of medication X" only to see a Neuro that says you can take 4 times that,,,raise your dose,, and in short time patient is pain controlled.... So they are specialists for a reason
You mentioned procedures....ok. One of the reasons to have an MVA is that a good Neuro can read it better than another MD. Remember they still can not image a nerve, so they can't do a test and say "voila" here it is,,,,however a good Neuro can infer that ther may be a place that has looped blood vessels that shouldn't be there,,or blood vessels that look too cramped,, and they can also tell if that problem is near where the TN nerve is... so a test read by the correct MD can probably tell you if she is a candidate for an MVD.
You can do research on MVD's, it's an inter cranial (brain) surgery that IN THEORY,, goes in to where the TN nerve is and puts a piece of Teflon
in-between the blood vessel and the nerve...in fact on this forum there are a number of great threads from people who have had the surgery and chronicled their experiences.
IF she has classic TN and a good Neuro looks at an MVA and believes that he can infer the position of the problem,,,the results can be amazing..
I say that because I want you to know that they can work but you have to do your work in there too,,good MD,,right test,,etc...
There are many,,myself included that have had an MVD and it has made the condition worse..If she has Atypical TN,,is the most likely. But if you start to even get to that point,, there are any number of people here that can give you great advise...
So you said she's on medication...what med?? There are a lot of them available and very often what a patient takes is because the MD prefers it not always because it works the best...All these meds have side effects that are very hard to deal with. So until she is on meds that are keeping her pain controlled-----because she may not be pain free--- especially since you have young children,, you are going to have to accept that her additional fatigue, mood swings, sometimes not being herself,,,,is the medication, not your wife...and you need to pick up as much with your kids as you can to give her time to rest (push through the side effect of the drug that makes her sleepy) give her understanding when she behaves differently, snappy, says things she wouldn't normally ever say (it's the meds, it can really change your entire personality---just ask my family) when she gets forgetful (which is really frustrating,,when you're trying to finish a sentence and the last word is ,,,,the,,,and you can't remember it!!!) let her speak, don't interrupt her she's struggling enough and if you finish her sentence because she is having trouble and you're getting frustrated,,,she's going to get even more uncontrollably upset,,,Just ask my Husband about that one!!!
So,,long story short,,these are not easy meds,,but they are liveable. Given the right MD and enough time she should be able to find the right med and dose to keep her pain free/controlled..
Now so you know,,most people who have TN for enough years usually end up on a cocktail of meds,,normally two different anti-convulsant that work together to help keep it controlled.
Now,, I have known MANY people to find the right med and the right dose and that's like,,it,, for a long time,,like your kids would be in college long time...I can't promise you that it's going to happen but I've been doing this for 10 years and I've seen it happen frequently enough to not be surprised any more. So don't loose hope.
About the meds,,I advise that unless you just can not handle the side effect,,nausea,,hives,, something like that,, you need to give them at least 2 months maybe more (closer to 3) to see if your body will work past some of the side effects,,like fatigue,, well sometimes your body adjusts and in time you may be more tired after you take them but you won't need to go take a nap and sleep it off as in the beginning.. There are also things you can do to help with some of the side effects...nausea,,some people take them on a full stomach,,others empty,,it's all how they effect you.....
Fatigue,,some people can plan to take a 20 min nap and they are for good others it's harder..I suggest looking at how many times a day you take the medication and increasing it,,,,NOT increasing the dose....but you can take 400mg in 2 doses or 3 just how much you take at once,,that can give you better pain coverage and help reduce the side effects....
Don't give up hope on the medications helping until you have really given a number of them a good try,,,yes that's going to take a long time,, but this is her health for the rest of her life,,,it's worth it...
I hate to be the one to break this to you but generally speaking this disorder does not balance itself out over time,,it gets worse.. medications can help,,,there are some procedures ( but before you consider ANY,,come here and ask,, between all of us we've had all of them) and there are things she can do to help....I'll get there in a minute...
This is a very individualized disorder that effects everyone differently. She will have good days and bad days and they will be completely out of her control,,the weather can change and it might effect her!! (it does me),,, and remember no matter how hard it is on you it's a million times harder on her...
She's in pain and she will get to the point that she's so sick of it she will try and hide it from you,, she will stop doing things she enjoys,, she may pull away from friends ( becoming reclusive is a very large problem with TN patients) she may pull away from you,,because she doesn't want you to see her in pain all the time,, she may be more quiet than usual,,don't assume it's you or she's annoyed (ask her) it may just hurt to talk right then!! Those faces she makes may not be ****** off at you it may be she's in pain,,she may avoid eating in restaurants or in front of friends,,because it hurts and she does not want to be embarrassed ,,,,,just remember that this just changed both you lives and you can do it,,,we've been doing this for over a decade now and we keep managing somehow!!
OK now for some better news,, things she can do now to help...First a good Vit B complex,, remember that better vitamins do work better,, that being said I just advise to buy the best ones you can afford to,,,B vitamins help rebuild the mylean sheath around nerves so it's essential that she be taking a good one.
Next,,,eliminate all aspartame, MSG, caffeine and as much sugar from her diet...they all can increase the severity of the TN,
She needs Sleep and as much as she can get (that's where you may have to step up a bit more) our bodies heal when we sleep and these meds can make you bone weary,, so the more sleep even if it's naps (but then they need to be alone and in bed not on the couch keeping an eye on the kids while you do the yard,,,real sleep only)
Another really hard one,, avoid stress,,,and each of us in time learns to know what those stressers are for each of us,,my stressors will be different than hers but they will each cause us pain.....reduce as much as she can
The one that no one listens to and perhaps the most important,,,learn to meditate...go buy a basic relaxation cd on how to control your breathing and basic relaxation techniques...it can save your life if the pain suddenly gets severe unexpectedly,,Now,,if she is religious/spiritual doing another one is advisable as well....I don't do both everyday but I do at least one and if I can make the time I do both because---for me---it just works better that way,,,,
Most people don't do this step either because of discomfort or not believing it works,,there are a ton of studies that show regular meditation helps with almost everything,,,it helps..
The basics,,eat healthy,,drink lots of water (especially on these meds)
The last easy one,,that's odd but true,,,get rid of any form of tooth whitening product....if she's concerned about white teeth do what our grandparents,,peroxide and baking soda a few times a week.....there is something in tooth whitening products that seems to over sensitize the nerves which can make the pain much more intense.. if she smokes,, the nicotine does make it worse,, if you can't quit because for chronic pain sufferers smoking can be really calming and help us back on top of the pain (catch-22) so if quitting is not possible try making a change over to the electronic cigs,,there are many good brands out there,,I use Green Smokes,,,
The last one that people do not often want to look at is chronic pain=chronic depression,,,they go hand in hand,,,she should see if she can tolerate Cymbalta since it it a light anti depressant and helps with pain control,,if not that then she should try one of the other anti depressants if she can tolerate them,,,they can make a real difference in helping balance the pain, the fatigue, the meds,,,they do help.
So I don't know if I've given you the answers you were looking for or the answers you wanted,,,but I gave you what I could. There is help, IF she's a good candidate the MVD can be a great procedure,,but do your homework before you jump,,,don't jump because you want it to fix everything,,it might make it worse,,,,,just don't look at this disorder like there will be one procedure or one pill that's going to fix this,,,it does not work that way with TN
And last,,don't be afraid to get help,, for her,, for yourself,,it's hard being a caregiver..... even if it means asking a friend to keep the kids for a few hours so you can both rest,,,,,most people are very willing and happy to help they are just afraid of over stepping boundaries,,,,ask for help
If you'd like more info,,if you need to chat,,if your wife needs to talk,,,you can private message me and we can work out a good time,,,,TN changes your life but you don't have to let TN define you.....Beth