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Trigeminal Neuralgia Message Board
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Old 02-03-2011, 04:47 AM   #41
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Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: Trigeminal neuralgia

Scott: Your experience is similar to my sister's. She did go to Pittsburgh though for her surgery. The staff there was wonderful! She had a small complication as she had a leak at the incision and didn't get to leave the hospital on time and she had to keep her head at a certain level vis-a-vis the spinal tap they put in. But she got out about 4 days later and went home to New Orleans. That was 10 years ago and she's done wonderfully ever since. So glad you both are doing well!

 
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Old 02-04-2011, 07:21 AM   #42
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LuMcInturff HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by brookline View Post
I still have some numbness, and still tire easilly if very active, but have no other side-effect and no TN pain. I am back on a more or less normal sleep-wake schedule, am able to eat normally, and am basically enjoying life again. I have been told that the numbness may never go away entirely, but being numb is not as bad as putting up with the trigeminal pains.

Scott
One of my chief complaints to myself has always been the numbness, especially that of my upper lip. My TN kicked back in at the end of last year and I found myself in the hospital as a result of a variety of issues.

It was a holiday weekend and the normal Neurologist that I had seen were no where around. The Resident Dr that came to see me, came in at some point and asked me if I had ever tried any homeopathic medicines that were available to me from most health food stores. I said no. He asked me if I were opposed to trying any, and I said, I will try anything.

Several hours passed and he returned to the room, with a short list and mini-instructions. When I was eventually released, I went to pick up meds and dropped into a health food store and was shown the area where these are kept.

The vials each had 80 pills in them and all were well under 10 each. The person showing me them, told me that I had to turn the vial upside down and twist the cap for the b-b size pill to come out and the instructions told me to put the pill beneath my tongue and allow them one at a time to dissolve.

I did not believe they would work, as the entire concept was to easy and not costly at all.

the company I was told to look for was Boiron - they are blue vials and the list is:

magnesia phosphorica 30c
hypericum perforatum 30c

they sounded like words I would use if I were in a Harry Potter movie holding a wand.

The instructions stated to wait thirty minutes between taking the two pills (one from each vial) and then to wait about two hours and repeat the process. The instructions then went on to say that if these worked, to stop using them and only to use them if I were to have a problem again.

There may be 60 pills in both the vials now.

No more numbness, no more having problems with wind in the face, no more hair issues...

it was all too easy.

Lu

 
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Old 03-22-2011, 07:59 AM   #43
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Re: Trigeminal neuralgia

I have TN, and they gave me Gabapentin...it has caused me to gain weight quickly...has anyone else experienced this issue?

I had heard that taking prednisone helps tremendously...anyone use that treatment...

I can not get the surgery until I have "tried all other options" but I am willing to do whatever it takes to get there.

 
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Old 04-12-2011, 08:32 PM   #44
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AnitaFlood HB User
Re: Trigeminal neuralgia

Hi ya'll. I have had TN for about 6 years. It started out with just a few "twinges" now and then but got progressively worse in a year's time. Started out with Tegretol which worked for about 2 years, then my doctor increased the dosage. Also took Baclefen and Gabapentine. When the medicine quit working altogether in the winter of '09, I found a surgeon in Winston-Salem, NC who had treated a lot of patients with TN. I made an appointment and within 2 weeks I had the microvascular decompression surgery. I woke up from the surgery and had no pain. A little numbing around my mouth but that I could deal with. I was in the hospital from Monday to Thursday. On Friday, I went to work for a few hours. I was pain free until May of 2010. The surgery I thought was a failure. Only lasted 5 months. Put back on Tegretol. I went to see my surgeon Jan. 2011 for a yearly follow-up. I asked him "Why did it not work?". His answer was that something was putting pressure on my trigeminal nerve. He said that looking back at my MRI he noticed that I had a severe sinus disease. I also had polyps up my nose. He said that we would try to control the "flare-up" with medicine and when that stopped working we could try the Gamma Knife. Talk about depressed! Just last week when my prescription ran out, I called him to renew it, he said he would but that I would have to go back to my Family Doctor. My family doctor had written the previous prescription but said I would have to go back to the surgeon. Now I am getting bounced back and forth and don't know where to turn. I am currently unemployed and how in the world do you go to job interviews when you can't talk half the time or stay awake? Anyone out there know if you can get put on permanent disability because of this condition?

 
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Old 09-27-2011, 10:33 AM   #45
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MistyLea HB User
Re: Trigeminal neuralgia

Quote:
Originally Posted by patti678 View Post
Hi :
I have had Trigeminal neuralgia for 21 years. I was assaulted in 1988 when I was 28 and woke up with a stabbing pain in my left ear that feels like an ice pick is being thrusted in my left ear. The pain is constant and horrible in nature. I have been on every drug for the condition with little or no effect. I am currently on Ms Contin and MSIR, which helps a little bit. For your sake I hope that this is not what is wrong with you. gOOD LUCK WITH YOUR CONDITION


pATTI

Hello Patti,

I realize this is an old post, but I wanted to make a suggestion to you. Another disease that resembles your symptom (severe ear pain) is called Ernest Syndrome/Eagles Syndrome. Please look this up and get checked out for it. The issue with all of these facial pain dysfuctions is that they carry similar symptoms but have different root causes, some can be cured or atleast better managed. I urge you to check this out. The main symptom of patients with this disease is chronic, severe ear pain. Good luck to you and I hope this message finds you well.

MistyLea

 
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