Ok so I have TN here I am one year later I've learned a little but obviously this is going to be an on going journey.
This Started with a shock and a trigger then progressed to shocks no triggers and last year had the burning sensation what I would tell folks was the equialant to having 10 canker sores in one area of your mouth. Somedays I could talk - others not so much. B's P's and M words were the hardest. Eating is tearing my food into little pieces and putting it in the right side great weight loss program except hard veggies are out. Drinking involved pooling it and tossing my head back somedays that is what I do and have to keep hydrated.
Once on Tegretal last year after one month it all stopped - I had Zero pain I can even tell you what date that was. I had taken a Sleep Apthena test and well I made them mad cause I couldn't keep the hose in my nose I went home at 4 am took a real nap woke up and no pain ( I thought it was oxygen from the tubes in my nose but they said they weren't pumping it in) I still wonder about Oxygen Therapy. Although pain free I still took my pills but decreased them until by April I was on 1 pill twice a day Just in case I horded the rest in case I need them in the future. The Pain free time lasted until July 19. Two days before my 45th Birthday. My friend a person I helped care for in his last days passed on June 29, I put on a huge historical event July 4th Weekend. then the club whose land I used started causing trouble so much I couldn't sleep. I helped with my friends estate at the same time, lost another friend because of that and well here we are again. Started with a shock then it progressed to the worst day being Aug 25th.
a Grand Maul shock -is what I call some I liken to a Light show at a Rock Concert a series going off in your face for actually only a minute but it's the longest minute of your life.
So what helps? Some things I found help me out a little Medical and non medical - There is almost like a progression of it has to get worse before it started getting better.
Medical
I actually have a Decent DR he is from University of WA through Harberview DR has me on Tegratol XR (extended release) this of course changes in dosage as the Pain changes - the forgetfulness, the tired feelings I have noticed do go away but only do I have this when one the higher dose- I didn't feel it much the first time around. This time I found I took them about a month before I started feeling like I could make it through the day without a nap. I am on 400mg in the Am and 500 at night. for now. 300 has no effect on making me tired or foggy. Being on the meds took last years pain of on a scale of 1-10 a 12 not on meds to a 7 this year while on meds and at it's worst. When on the lowest dose I did get tingles in spots but once I would touch them they would go away. It was weird but as long as meds help. Oh and I learned set a time and take them every 12 hours on that time exactly. I set my alarm to make sure. Pill boxes with days do help especially on forgettful days.
Non Medical
Get rid of the Stress - I left my club and worked out what was giving me the most stress - If I could do something about it I did - If I couldn't I wrote it down so it was no longer in my head. Most folks say meditate. I like the naps.
Activity - it sounds strange but when I was out on Nature walks or events ,I felt great and the pain, even the burny pain last year subsided I think something about the adreneline helped. Get out of the house. Do a little exersise
Oragel - calms the nerves in my mouth - I have put it on face but the numbing feeling on bad days makes eating and drinking bareable. I always carry a tube and have one in my car and near my bed just in case. It's an action that your doing something. Most the time it works.
Vitamin B - gives me a little more energy plus they are nerve support vitamins. . Vitamin support I hear from my Stepmom who has MS is very important. Do your research on Vitamins, She gave me a super 3000 and unfortunatly they made me toss them back up. So read and know what works. I read on a TN site Flax Seed was not a good one I am reading on many TN drug sites What interactions are there are a few I guess I need to check with my DR. not expecting them to cure just support the rest of my body and they are good for energy. looks like calcium and vitamin D are benefical as well. but it's not cure that I am expecting from them but just as a good supplement.
Energy Shots - the Meds make me tired and sometimes I still need to function - I ask the Nuerologist and of course like anything in moderation this is OK. So he approved. These help with the forgetfulness and offer moments of clarity. I sip them instead of taking on the whole shot they are full of vitamin B. I also like Vitamin Water XXX with B's
When not pain - I take a moment and think about what I am doing more and Enjoy the little stuff - like Picking your nose - seriously when it pain it feels like you need to all the time. - Eating a Sandwich or Burrito like it should be eaten, Kissing and most important Brushing my teeth.
So Wednesday Aug 25 2011 was a really bad - Grand Maul shocks way worse then last year in action and pain was a good 7-8 on the pain scale all day. Next day almost none. little light when ate a cheeto. and brush my teeth light still got a twinge - and today a tiny shock but little pain. Could I be heading for next remission? Hope so I have too much to do this year to be in pain.
I'm going to Look into other forms of care - Watched a few videos on YouTube and may see if Upper Cervical Care may help - found out the cost and if it doesn't work within 6-8 weeks it's not going to. But I did have a bad case of Whiplash in 06 right at my left ear so much it turned it red and burned during accident. it may be something to at least look into. Not so sure about the Accupunture - I don't have insurance for all this.
Well, Thats about what I have so far. Trying to keep a sense of Humor about this but more so trying to find what works for more good days then bad. D*
Sorry I didn't post this for everyone - but not sure if my advice would help anyone else or violate the rules of the site. I just needed to know what I have done so far and a place to write. funny after reading the tabs looks like I am heading in right directions. Realizing not a "Cure" but there are pain free times and I am looking to increase those.
Sept 3,2011
Down to a light discomfort a level 2 on pain - only got it when I pushed eating too much on left side. I find reading other peoples accounts more depressing then what is going on. I help out anyone who is starting Tegretol by telling them the side effects do subside but then someone tells them that Tegretol will only work for about 7 yrs. I think GREAT then what? I sat that night and cried more then from the pain when I find out my relief is so limited.
I'm looking in to the UCC upper cervical but do I wait until I am in pain again before I go do I wait the 7 years before the tegretol no longers works? I ordered the book Striking back. I hope I will get some answers there. I'm not sure a support group is the way to go but I do need a place to write this stuff out. There are not many success stories just folks in more pain after surgery. I read one who was successful and 15 that are not. I want to avoid the mvd as much as I can. I live life by each days victory yesterday I ate normally I flossed my teeth on the left side and had no shocks. that was a victory.