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Old 01-02-2009, 11:49 AM #1
Big-Foot Big-Foot is offline
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Unhappy Tired - Stressed - Scared - New person could use help!!!

Hello,

Not too sure where to start - so I'll just jump in...

New-
I'm new to this forum - but not new to forum communities as I am a member of a couple (automotive related) communities. I have a true belief in the bonds and cama raderie that can evolve in places such as this.
Specifics -
  • Age - I'll be 56 years old this coming April.
  • Marital Status - Happily Married for 33 years on Sept 11th.
  • Parent - Father of one son - 25.
  • Work - I am a Technologist for a major financial institution.
  • Fun - I build and drive racecars semi-professionally in wheel to wheel competition (organized roadracing)
  • Challenges - I have been diagnosed with Trigeminal Neuralgia.

Tired -I've maybe had 12 hours of sleep in the last 4 days. I normally get 5-6 hours per night. The waves (sometimes sustained like the tide - 3 to 4 hours long) have prevented any sort of quality sleep let alone quality of life itself.

Stressed -
My job (like anyone's these days) is subject to disappearing. I work 70-80 hour weeks on a salary - simply because it takes that to keep up and get the job done. I could likely do my job better and in less time if I were in less pain or less whacked-out on the prescription drugs.

Scared -
I am scared that the drugs that the doctor has had me on are impacting my ability to function and do the things that I love to do, as well as my ability to multi-task at my job. I seem to have little multi-tasking ability now and it's required that I keep multiple balls in the air (5-7 things) constantly.

Now the Cliff's Notes of my recent life;
On a Friday evening back December of 2001, I was just closing another typical 70 hour work week and went with my wife to the hospital to visit my sister who just had Gastric Bypass surgery (so have I by the way). I was very tired and still wearing my coat sitting in a chair waiting for my sister to awaken from her nap. The nurses appeared suddenly to change her bed clothes and give her an air mattress. I stood up suddenly to step out of the room and give her, my wife and the nurses some privacy and space. I remember walking out the door and that was it. According to the nurses at the nursing station 20 feet away, I was standing bolt upright and just fell over like a board - landing on my left side with my face impacting the linoleum covered concrete floor.
My next memory was of my pastor praying over me and my head felt like it was on fire. I had fractured my skull in 3 places and ended up getting 2 titanium plates with screws installed to rebuild the orbital (eye) socket area of my skull.. For purposes of vanity, the surgeons went in through my mouth, cutting up along side the cheek to install the two plates. The third fracture they figured would heal with the support of the other two plates.

Over the period of years, I have learned to deal with the periodic and somewhat annoying partial facial paralysis on my left side. Simply touching the left side of my face would make it go numb.

Fast forward 5 years.

I started having tooth aches on my left upper side. I've never been REALLY diligent about tooth care - brushing once a day and rinsing was about it. Both parents had dentures by the time they were 40.
I went to my Dentist and he found some cavities - filled them - ended up with a crown and a root canal on one of them.
A few weeks later, another tooth started giving me fits in the same area. Really bad pain. The Dentist reluctantly did a root canal on that tooth as well.
All was well for a few months - until - yet another tooth in the same area was lit up like a billboard. It was a tooth that had already been crowned and he found a cavity underneath the crown that was "close" to the root. Add another root canal to the list.
We went for about 8-9 months now without any real issues.
Then over a holiday weekend (Labor day), I started getting really bad toothaches - to the point where I could focus on nothing but the pain. I ached so bad I could barely stand it. My Dentist was out of town so I went to another Dentist (sister's). This one said that I did have another cavity under yet another crown that was close to the nerve but that it should not be causing me that much pain.
My - Sister's Dentist did not want to do a root canal on yet another tooth in the same area as I had all the other work done UNLESS I were to go see a Neurologist to find out why the pain was so bad. I was so ticked off - well - I don't want to repeat any of the things I was muttering under my breath whilst walking from his office to my car.
I called my HMO and got an appointment for the following Wednesday to see a GP (who had to write the recommendation to a Neurologist).

My Dentist was back in the office on Tuesday and saw me immediately. I told him what the other Dentist said about the Neurologist and also about the bad tooth pain. By this time my stomach was totally raw from all the Ibuprophen I had been taking every 4 hours like clockwork for almost a week now. He took another xray and confirmed that this tooth was in some degree of trouble but should not be causing the level of pain that it was.
(Note - if I could have gotten hold of this tooth with a pliers, I truly would have pulled it myself).. He did a root canal on it (number 4 now) and told me that I should see the Neurologist as well to double-check.

I saw the GP and got an immediate referral to the Neurologist as well as a prescription for a pain killer to be taken only if the pain got really bad.

When I saw the Neurologist, I related this entire story, to this point, with him. The pain was dramatically reduced now that I had that last root canal.

He said immediately (actually he said it too fast for it to be believable) that he felt I was a classic case of TN and that he was surprised that I had any teeth left as most people with histories like mine actually had their teeth pulled on top of having had root canals.

He put me on Trileptal 150MG and said to take it twice a day or as needed with up to 4 pills at a time. He said that the dosage was as small as he wrote commonly for small children. I started with 1 pill twice a day and ended up with 1 in the morning and 2 in the evening as it was evening time that I seemed to have more pain (albeit light pain) than during any other time of the day.

Fast forward another year -

(about a month ago)
I'm losing it. My Multi-tasking ability is all but gone now. I can walk down a hall of an office building and turn to go into a room and immediately forget which direction I came from. My memory is really starting to get bad - bad to the point where I start to say something to my wife and forget the reason I was even saying it or what my point was to begin with. My sense of balance is growing increasingly bad. My visual acuity is going downhill fast - particularly when it comes to my peripheral vision.
I start blaming it on the Trileptal.
I stopped taking it altogether. I knew that I should have consulted with the Dr. first but he's very hard to get hold of and his offices have moved 3 times in the time I have been seeing him.
About 2 weeks ago, I started getting toothaches (upper left side again) and went to see the Dentist. He checked and found nothing wrong, but he was about to go on vacation for the rest of the year and gave me some antibiotics to quiet anything down that I might be having some hidden troubles with.
4 days ago - The pain is back and with a vengeance.
I started taking the Trileptal again 2 pills twice a day.
My quality of life is in the toilet. The pain "seems" like it is subsiding some.

I need to be working right now but can't focus on anything.

I feel doomed.

I've called the doctor's office and am waiting for a call back.

If you've made it through all of this condensed version of my life as of late - God Bless you..

If you know of any short term cures or ideas concerning any way to put this pain at bay - I would be most appreciative...
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Old 01-02-2009, 11:59 AM #2
Jaspar Jaspar is offline
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Yes, antiseizure medications such as Trileptal can affect cognitive function, reflex time, etc. When side-effects grossly interfere with quality of life, you may want to discuss with your doctor trying something else, or adding a medication to help cognition in the daytime such as used for narcolepcy or even alzheimers.

However, your poor sleep qualty is of utmost importance to address. It can cause cognitive impairment, mutiple physical issues, heighten pain sensitivity, and even cause paranoia and precipitate depression and psychosis.
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lou_lou (01-03-2009)
Old 01-02-2009, 12:04 PM #3
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Randy, I wanted to welcome you to NT. There are very kind and caring people here.

I'm so sorry about all the pain and problems you are having. I hope you find some help.
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Last edited by azoyizes; 01-02-2009 at 06:13 PM.
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Old 01-02-2009, 12:22 PM #4
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Hi Randy and welcome to NeuroTalk...I'm so sorry to read of the pain you are in. Here is the link to our TN forum...http://neurotalk.psychcentral.com/forum26.html

You'll find a lot of compassionate people there too.
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lou_lou (01-03-2009)
Old 01-02-2009, 01:40 PM #5
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gastric bypass commonly results in Vit B12 def. good luck
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Old 01-02-2009, 02:47 PM #6
Big-Foot Big-Foot is offline
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Thank you for the warm welcomes....

Jaspar - So what I am / have been experiencing is a typical reaction. Thank you for the validation.

azoyizes - Thanks so much for the eHug!

Alffe - Thank you for the link to the correct sub-forum! Much appreciated as there is a lot here!!!

Pabb - Thank you as well.. My wife, sister and I all get monthly B12 injections. I get really run-down if I don't take them. I'm 10 years post-op on the Gastric Bypass.

All - I've placed the call to my Dr's office and the soonest that he can see me is the 13th (which is far too long).. I will go back to my dentist as well to see if he can see anything. The pain level right now has subsided to a dull ache but I expect that the searing pain will return this evening.. ((sigh))..

I'll go and read on the sub-forum now.

Thank you all once again ! ! !
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Old 01-03-2009, 09:08 AM #7
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Lightbulb Trileptal

This drug can cause hyponatremia. That is a lowering of sodium in the blood. This is a serious thing, and confusion is one sign of it. You need blood tests ASAP to see if that is happening.
http://www.bipolarworld.net/Phelps/ph_2004/ph1123.htm

Also gastric bypass patients develop nutritional deficiencies commonly. B12 is critical in these patients. You need to be tested for that also. Low B12 levels cause neuro symptoms, and neuropathies. Your reading on the test should be above 500. In US...some labs still report levels very low levels in the 200 range and below as normal. This is NOT normal.

Another thing to test for is Vit D. Antiepileptic drugs deplete both calcium and Vit D. Low Vit D is now being tested in many patients with chronic pain issues, and found to be low.

So you need some medical intervention to see what is going on with you.
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Old 01-03-2009, 09:33 AM #8
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Hello and welcome to Neuro Talk, feel free to explore and do not hesitate to ask questions concerns and or worries you may have. Folks here are fantastic helpful and kind, again welcome to NT, here is a link to the TN Forum if you have not already found it

http://neurotalk.psychcentral.com/forum26.html
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Old 01-03-2009, 09:56 AM #9
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Welcome RandyI'm so sorry to hear about all the troubles your having.

I hope you can find the answers to your many questions here at NT. Good to see a few already gave you some good links that might help...welcome again and hope you can just enjoy cruising around the board and stopping in anywhere. I turely hope your Neuro can find some meds that will work for you instead of against you.

I have a link here that is for a site called WebMd. It's a pretty good place to go for answers. http://www.webmd.com/pain-management/guide/trigeminal-neuralgia

Take care....
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Old 01-03-2009, 11:30 AM #10
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hello randy and welcome to neurotalk ... there are lots of friendly and supportive people here and i see you have already been given a link to our TN forum ... i also see you have already been given some great advice ... if you need any help please ask one of use ... we are all here to help ... and again ...
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