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-   -   recently diagnosed (http://www.healthboards.com/boards/trigeminal-neuralgia/935053-recently-diagnosed.html)

samrs86 01-12-2013 10:27 AM

recently diagnosed
 
and after reading and dealing with this pain, I'm not thrilled.
at first I thought maybe this pain was temporary, it would leave me and never return.

when I first experienced the pain I thought it was a tooth but then after eating,drinking, and poking at all my teeth I realized it was something more serious. I had 2 sleepless nights before finally going to the ER.
they ordered a ct scan and told me it was TN. I was elated to know there was something out there and I wasnt going nuts. now I'm just irritated.

the first two nights of pain were excruciating. I was laying on the floor in the fetal position crying because the waves of pain that would come over my face. it would hurt from my ear all the way to my chin. it would only last about 15-30 seconds at a time and came every 5-10 min. those were the longest seconds of my life. I was taking about 1500 mg of tylenol, the only time in my life i had ever taken more than 200 mg. the pain finally subsided and I went to sleep. all day I have a somewhat constant annoyance of pain. the sharp pains from the first two nights are the worst Ive felt so far.

Ive read that eating and drinking can make the pain worse, so far I do not have that problem. my biggest issue is going from hot to cold. I love hot showers but my roommate loves the AC set at ice box levels. I had to show her my papers from the emergency room that said extreme temp changes are very bad! she has gotten a little better about it but complains to our other roommates about how hot the apt is, like Im doing this on purpose!!
Ive changed my routines to fit my angry face. i take cooler showers. wrap my face with a scarf if its cold out and avoid the cold weather as much as I can. I go to class late sometimes if its really cold when I'm supposed to leave the house. I feel its a small sacrifice to make to avoid the pain.

I'm told this will only get worse. I recently turned 26, Ive had this for less than 4 months.
any advice in dealing with this would be great.
thanks!

Titchou 01-12-2013 08:32 PM

Re: recently diagnosed
 
I strongly suggest you check into the facial pain association. They have TN approved neurologists in a data base. Hopefully there is one near you. My sister had this condition and so am very familiar with it. There is a vascular decompression surgery which was very successful for her. I suggest you look into it. Best wishes...

tiff-cher 01-17-2013 11:56 AM

Re: recently diagnosed
 
I have never been diagnosed with this, but I know I have it in both sides of my face, I used to work for a neurologist, so I have an idea of what the pain is like....so painful.

Angelina123 01-29-2013 02:13 AM

Re: recently diagnosed
 
Hi,
I have had Trij. Neural. for about 4 years. And you're right -- it is the most excruciating pain you will ever feel. The pills the neurologist gave me, only helped some. They wanted to give me a different medication but I said "no" because I had already done my research and other said you would be switched from 1 medication to 2 medications to 4 medications, and I didn't want that.

So, I tried alternative type of therapies and the 2 together worked excellently. I have not felt those excruciating pain in about a year. I am very grateful and want to share that with you so you too can get some relief.

The two therapies are:
1. Acupunture; and
2. I see an Ayurvedic doctor and he has given me herbal powders.

I tried acupunture first and started out going twice a week for a little while for $40 a session. Then it dwindled to once a month. Once I discovered there was an Ayurvedic doctor where I lived, I made an appointment to see him. He doesn't charge any specific amount of money but ask for donations. I was more than happy to oblige. He put together an effective herbal powder for pain relief. Now that is so effective, I can not stop being grateful. I am pain free and loving it. I would rather take herbal powders than prescription drugs because the herbal powders or anything herbal is good for you and add health to your body. It does not take away or harm your body. Thanks for letting me share

tiff-cher 01-30-2013 08:33 AM

Re: recently diagnosed
 
[QUOTE=Angelina123;5124622]Hi,
I have had Trij. Neural. for about 4 years. And you're right -- it is the most excruciating pain you will ever feel. The pills the neurologist gave me, only helped some. They wanted to give me a different medication but I said "no" because I had already done my research and other said you would be switched from 1 medication to 2 medications to 4 medications, and I didn't want that.

So, I tried alternative type of therapies and the 2 together worked excellently. I have not felt those excruciating pain in about a year. I am very grateful and want to share that with you so you too can get some relief.

The two therapies are:
1. Acupunture; and
2. I see an Ayurvedic doctor and he has given me herbal powders.

I tried acupunture first and started out going twice a week for a little while for $40 a session. Then it dwindled to once a month. Once I discovered there was an Ayurvedic doctor where I lived, I made an appointment to see him. He doesn't charge any specific amount of money but ask for donations. I was more than happy to oblige. He put together an effective herbal powder for pain relief. Now that is so effective, I can not stop being grateful. I am pain free and loving it. I would rather take herbal powders than prescription drugs because the herbal powders or anything herbal is good for you and add health to your body. It does not take away or harm your body. Thanks for letting me share[/QUOTE]

have you ever tried Tegretol? Just curious!! :angel: tiff-cher

innerspirit 02-11-2013 10:58 PM

Re: recently diagnosed
 
Hi there I've had TN for 17 yrs. In those yrs I've only taken tegretol perscribed by my neurologist. It has worked wonders and has kept the pain at bay. This excruciating pain has disappeared after being on the tegretol for 3 months. It has reappeared a few times during which I take tegretol until it subsides. I hope this helps. Make an appt with a neurologist to keep it in check. Innerspirit

agoodmanhattan 04-13-2013 08:45 AM

Re: recently diagnosed
 
Everyone's experience with this is different. I was 25 when diagnosed and it was a nightmare. They put me on gabapentin, trileptal, tegretol and the only thing those medications did was turn me into a zombie. They only medication that gave me a little but of relief was ativan. I decided to have the neurosurgery to correct it(my neurosurgeon is one the of the best in the tri-state area. He did a great job, haven't had at TJ symptoms I do however struggle with pain due to the surgery. I get constant headaches and pain in my neck and jaw. At least that pain can be controlled. Unfortunately opiates don't help with TN pain. Just the anti-seizure meds which have terrible side effects. If I were anything with this terrible condition I would opt for the surgery unless the medications were really helping without disrupting the quality of your life.

agoodmanhattan 04-13-2013 08:48 AM

Re: recently diagnosed
 
Everyone's experience with this is different. I was 25 when diagnosed and it was a nightmare. They put me on gabapentin, trileptal, tegretol and the only thing those medications did was turn me into a zombie. They only medication that gave me a little but of relief was ativan. I decided to have the neurosurgery to correct it(my neurosurgeon is one the of the best in the tri-state area). He did a great job, haven't had any TN symptoms I do however struggle with pain due to the surgery. I get constant headaches and pain in my neck and jaw. At least that pain can be controlled with narcotics and muscle relaxants. Unfortunately opiates don't help with TN pain. Just the anti-seizure meds which have terrible side effects. If I were anyone with this terrible condition I would opt for the surgery(do your research on neurosurgeons not many are qualified in trigeminal neuralgia surgery) unless the medications were really helping without disrupting the quality of your life.


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