Ok, so you have a tentative diagnosis of TN until they rule out tumors, MS and the like,,,,
Well Topomax can work faster than you think,, always say this to yourself,,let it be your mantra,,,everyone is different.
What may take someone else a month may only take you a few weeks,,so don't give up hope..
The meds,,ok first thing you need to learn is that as long as you do not exceed your MD's daily dosage how you take it will be something you learn that will be best for you.
If they say take it twice a day you may find that it makes you too groggy or it doesn't last 12 hours but breaking the same dose into 3 times a day may work better...a lot of managing this is being wiling to take control of your own health care and sometimes demanding that they give you good health care.
This is a difficult disorder but since it's not life threatening sometimes we don't get to the top of the appointment list or return phone call priority... you may have to push but don't be afraid to..your MD's, meds,support structure and yourself all make up the team that helps you learn to control this and it can be controlled and is (after a while) for most people. So don't ever loose hope,,,ok?
Well, as I said aspartame is a killer so no more diet anything unless its Splenda or something similar, MSG which is usually easier to avoid but start looking at labels you'll be surprised. Caffeine, try and limit to one beverage a day,,, and the hidden one of tooth whiteners,,they increase the sensitivity in the teeth and the nerves. My dentist, she's been one for decades and has dealt with TN before (my blessing) says on days that the pain is too high brush what you can and use Listerine, even the non-alcohol one and use that. It's not perfect but sometimes we all have to compromise, she says it will keep the gums in good shape and is better than killing yourself when it hurts too much....now its not pleasant. It's painful too but not nearly as much, so it's a good fall back. If you have issues with white teeth,,, the old way still works a few times a week use hydrogen peroxide and the brush with baking soda,,keeps the gums healthy and teeth white,,,our mothers did it,,,,well maybe not yours,,I'm a lot older!!!
Alright things you can do, B complex also a good multi vitamin high in Selenium. The basics, eat healthy get rid of as much processed food as you can drink water because it helps your body get rid of the toxins from any medications,,,it does help. What you are trying to do is build your immune system and keep it healthy.
Sleep is not a luxury it's a necessity and lots of it,,your body repairs itself during sleep and you may find higher doses make you groggy. If you are not sleeping because of pain get some Ambien from your MD or a good OTC. You must sleep!
As a quick side note, many of these medications can make you groggy but if you can manage a few months very often your body will adjust and it won't be as bad,,,most people jump too soon to change a med because of the fatigue, my rule is at least 2 months ,,3 if you can,,if the side effects have not lessened by then they aren't going to so then talk to your MD about another med,,,,however if you are getting good pain coverage it probably makes more sense to try and change the dosing schedule and you may solve your own problem that way. I went for years taking meds every 6 hrs because they didn't last long enough,,,so I decided what I was going to take and when and it worked for almost a decade that way,,,,
The bane of our existence,,,,stress,,get rid of as much as you can, exercise if you can that's great, if not learn what really matters and what doesn't,,,this comes from a very type A personality,,trust me,, no more road rage,,keep the stress down....
Here's one I give that very few people do and I think it's crucial. Learn to meditate. Even if all you do is get a relaxation CD that helps you learn to breath,,,,DO IT!!!
you can lessen or occasionally prevent a bad attack if you learn to breath through it,,the only way to do that effectively is practice it when your not in agony so that when you are,,you're prepared....If you want it to be a spiritual meditation that's fine, as long as you relax and learn to breath. I do both depending on what I need the most at the time...and work up to at least 30 min, start less because it's too much otherwise,,,,but remember your health is worth 30 minutes a day to stay sane and help control the pain,,,,,I wish I could get more people to understand the necessity of this.
I would also check the TNA website to see if there is a support group in your area of close enough to try going....things really changed for me when I finally met someone else with this disorder,,,it was like I really wasn't alone in this,,,for me it helped a lot,,,I had had TN for 2years before I met someone else with it,,,I had become so isolated,,,,look into it,,,,nothing to loose!
Go online to either the TNA website or Amazon and buy the book "Striking Back",,it is probably the only really good book written about TN and refer to it as you need to,,,a lot of it is anecdotal but you will most likely see yourself somewhere in there,,,,I did.
If you're getting afraid of going out in public for fear of an attack or if you work/school,,,a good way to deal with situations like this is go online to webMD or Harvard Med ,,,,just go to a reputable site and find the description of TN and print it out,,it can help in situations where people, friends, family, boss just doesn't get it,,or doesn't want to believe you because "you don't look sick" always keep some with you and hand them out to people you may have problems with,,,,you can also print out info on the meds that you may be taking and highlight the side effects if your having trouble with excess fatigue and getting a boss to understand it,,,,,,I have used this "tactic" with many people over the years and in fact all too often I hear ," well I have symptoms like that or my mom does" I have gotten more than a few total strangers to go get help early before the disorder gets harder to control,,,so don't be afraid, try and live your life as normally as possible.
That's the basics,,,start here and don't overload what you can do with this...it's not the kind of disorder that you can google and learn everything about and work on fixing it,,it's the kind of disorder that you grow with over time in understanding yourself and learning to control it.
This is among the most individualized disorders out there, you have to find how you are going to handle it,,it can't be my way,,I can give you all that I know and I will,,,,willingly but in the end you will have to find out how you are going to manage it.......
Everyone here has been where you are and we get it, we will never think you're crazy or not believe you,,,and there are enough good people on here to have a lot more answers than what I can give, but this is a start for you,,,
I'm in Cleveland now getting reprogrammed,,,,if you're interested you can look under the PENS thread,,,but please remember that the system mentioned there is still experimental and only for extremely severe cases and you will most likely never get that bad,,,,that being said,,I'm out of town until Thursday,,but after that if you need to talk I can always make time,,you can private message me and we can arrange a time that works,,,don't be afraid to ask for help especially while you're trying to get the pain under control,, you need it,,,,so if you need to talk,,just ask,,it's no problem.
Most of all remember that you are not alone, we are all here for you to help and understand.,,,,Keep coming back and stay involved,,we are all rooting for you
Hope this helps ,,,,Beth