Hi, I'm new here and Trigeminal Neuralgia is hell on face...

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Tasaulkah
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/22/2012 7:58 PM (GMT -6)   
Hi Everyone, my apologies if I'm doing what is out of the ordinary...I thought that this might be the easiet way to reach out for wisdom, experience, etc. I have suffered with trigeminal neuralgia for just over three years now. My pain varies between 7-10, though typically its an 8. Looking for any words of comfort, wisdom, experience, etc. Many thanks.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 23585
   Posted 7/22/2012 9:06 PM (GMT -6)   
Hello and welcome to HW Chronic Pain. New friends and fellow sufferers are always welcomed here, glad you found our small corner of the net. Sorry you have a need to be here, but you will quickly be among friends. That is a lot of pain you are going through, for sure.

What type of meds are you currently on, and do you have other maladies that add to your pain?

You will find much common ground here, in this particular segment of Healing Well, we all come here because of different reasons (me: chronic pain associated with advanced prostate cancer and nerve damage as the results of radiation treatments that went wrong), but we all understand the word Pain.

If you ever need to vent your pain, your feelings, etc, this is the place to do it. We all do it from time to time, no one will get mad at you for doing so.

I wish you the best, and I am sure the others here will greet you shortly. Please never give up hope, you are among friends here.

david in sc
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA still rising
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities Since 10/2008
“I live in the weak and the wounded” – Session 9

Tasaulkah
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/22/2012 9:17 PM (GMT -6)   
David, thank you for your warm welcome. I truly feel empathy for the hand that you too have been dealt. Thank you for your message of hope, it is certainly needed as of late. I urge you to stay strong and sent my well wishes your way.

In response to your question regarding medicine, I've been on Nucynta 50-100mg Q8h, mdd 400mg QD for three years now. It is well tolerated, however I maintain an average of 8/10 for pain. Additionally, I take 20mg of Cymbalta BID, for three months now and have found it to render my mobility increased. It helps my mood and kills my appetite and made the breakthrough pain frequency decrease. Sadly, I do not have health insurance and the costly amounts for these two meds do not make them feasible options anymore. I was told by my pain clinic that my options are merely Cymbalta, Tramadol (which I found useless) and Nucynta. In the past I've tried Lyrica, Tegratol, Gabapenatin, something that started with the letter T that escapes me now, acupuncture, ice/heat, (compression seems help better, though I'm not certain why) and, well...the list goes on. I think I may have burnt a bridge by hobbling out of the pain clinic after being there for a little under four hours of neuro-testing, having an unexpected period, bleeding all over the table and being told that after jumping through all of Friday's hoops that there simply aren't any other options available to me. Of course, telling her to stick it was a poor choice on my part, but I think everyone is allowed a little craziness from time to time. I find the answer of "there are no more options for you" hard to believe after years of working in pharmacy, as I know this to be quite untrue. I've never given them a reason to question my proper usage of my meds, I never over use or run out early. My bp clearly shows pain when I shoot to 169/98 when I'm typically on the low side of normal. I fear the upcoming detox of the SNRI and opiate/NRI. I cannot understand how a professional would allow that on her watch. So... Here I am. Wondering how I will handle this added stress of withdrawal on top of my already weakened state. Ugh. I have about a week and a half left of meds. There's my scoop!

Post Edited (Tasaulkah) : 7/22/2012 9:38:57 PM (GMT-6)


formyboy
Regular Member


Date Joined Apr 2012
Total Posts : 27
   Posted 7/22/2012 11:25 PM (GMT -6)   
Hi Tasaulkah,
Welcome to HW. It is a wonderful place for support and full of folks that do care.
I was dx with trigeminal neuralgia a few years ago and I am sorry you are suffering with this pain. Like you I took all the meds you listed and am just starting cymbalta. The one med you did not list was amitriptlyne(sp?). This is one that worked really well for my facial pain as well as migraines. The one side effect that I was unaware of is possible weight gain. If I had known about this I would still be on it bc I would have been more deligent with food consumption. This is an antidepressant and is pretty inexpensive, regular dose is $4 a month at Walmart. I hope this is something that may be an option for you and you could discuss with dr.
I do understand the frustration with being told there is no other options. Maybe its time to fins a new dr.
Best of luck to you and I hope you find relief soon.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 7/23/2012 3:50 PM (GMT -6)   
Hi Tasaulka
I wanted to welcome you here. Glad you found us but so sorry you are suffering so much. You will soon find out that the members here are very caring, understanding and full of knowledge.
 
Myself I suffer with intractable constant headaches. It been over twelve years now and like yourself I have tried all the meds, seen all the specialists and done every form of treatment available and nothing has helped my pain. I just keep ice on my head most of the time. What i am pursuing right now and this option could help you as well and that is an occipital nerve stimulator. It can also be used for the nerves involved in your case. You can find a lot of info on the net if you google occipital nerve stimulator. Are you in the states? I am in canada and have found two doctors here that do the surgery but i know it is done in several of the states. I have also found a facebook group of people who have had the surgery done with great results or looking into getting the stim. Let me know if you are interested. There are those with TN as well. You might also look at the migraine/headache forum for info or use the search bar.
 
I hope you will keep posting with us and let us know how you are doing.
 
Suzane

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 595
   Posted 7/23/2012 4:08 PM (GMT -6)   
wow, your pain level is high and to much time of every day in that much pain. without gaining some kind of foothold the better the odds it will become permanent and more severe. you either need a neurologist that does not mind treating this aggressively or a pain-medicine specialist. different people respond with varied results to the standard pharmacotherapy. my buddies wife uses prednisone as an abort med. if she takes it at first sign it stops it. when she was more like you without a foothold she took Tegretol (carbamazepine) which i think was invented for trigeminal neuralgia in the 60's or 70's. then she moved to Trileptal (oxcarbazepine) an anti-convulsant/anti-manic. the whole time given 5/325mg percocet #90/month. one flare up prednisone was discovered to be great. i think they have interventional things for this done by a pain doctor or neurosurgeon. accupunture works. a range of medications exsist so you need to experiment and you will find some control.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

Radles
Regular Member


Date Joined May 2010
Total Posts : 49
   Posted 7/29/2012 5:53 AM (GMT -6)   
Hey Tasaulka,
I was interested to read your post, I too suffer with a form of Trigeminal Neuralgia and would rate it an 8 also. During the day I find it more bearable due to distraction, Cymbalta 120 mg am, Lyrica 150mg bd and then Xanax 1 mg prior to bed. I have not tried other meds, but I know there is not much else out there for me. I don't find tramadol too effective either, but neurofen plus helps occasionally but I don't want to go down that path unless I have a headache.
My pain is constant, it stings, bores, grips and pulls my left jaw around all day long...I am exhausted!
I did not understand your detox comments, what was that about? Lyrica in Australia is expensive and I hope I can keep it up. We have just had a $260 million govt grant for Pain studies here, hope they come up with some answers soon!
Good luck.

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 7/31/2012 9:11 PM (GMT -6)   
Hi Tasaulkah. You must be in a lot of pain to seek out HW. Im sorry that you have the need to come here. Im pretty new here myself and have really learned alot! Great people with loads of info/exp. and kidness. I hope you find the answers your looking for.
I hope you get well enough to not need HW but I think you found the best site/people on the net!!! WELCOME!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed this spring. Hoping to be diagnosed with a good sense of humor ;-)

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 7/31/2012 9:11 PM (GMT -6)   
Hi Tasaulkah. You must be in a lot of pain to seek out HW. Im sorry that you have the need to come here. Im pretty new here myself and have really learned alot! Great people with loads of info/exp. and kidness. I hope you find the answers your looking for.
I hope you get well enough to not need HW but I think you found the best site/people on the net!!! WELCOME!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed this spring. Hoping to be diagnosed with a good sense of humor ;-)

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 7/31/2012 9:12 PM (GMT -6)   
Hi Tasaulkah. You must be in a lot of pain to seek out HW. Im sorry that you have the need to come here. Im pretty new here myself and have really learned alot! Great people with loads of info/exp. and kidness. I hope you find the answers your looking for.
I hope you get well enough to not need HW but I think you found the best site/people on the net!!! WELCOME!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed this spring. Hoping to be diagnosed with a good sense of humor ;-)

Savvy
New Member


Date Joined Aug 2012
Total Posts : 9
   Posted 8/10/2012 9:37 AM (GMT -6)   
Hi Tasaulkah,
 

I'm myself suffering from Trigeminal Neuralgia, so I can understand your pain well. Attacks have become very frequent for me and now I'm going for a MRI tomorrow. Do not worry. This disease is not fatal although debilitating. Eat well, identify your triggers and avoid them. Try remaining stress free. Think positive. Make sure you

·         Eat soft foods.

·         Make sure your drinks and foods are not too cold or hot when you consume them.

·         Wash your face with lukewarm water (body temperature).

·         Use cotton pads when washing your face.

·         Rinse your mouth with lukewarm water after eating if tooth brushing triggers an attack.

·         Avoid known triggers as much as possible

 

Follow the advise of your neurologist. If attacks persists go for a MRI. MRI as my doctor says is not for diagnosing Trigeminal Neuralgia but for identifying tumors etc. which will be a rare scenario and for screening whether we require a surgery for the blood vessel that is causing us pain or not. I'm never gonna go for a surgery even if the doctor advises so as it is not the permanent relief and TN can come back even after the surgery.

 

Thanks

 

Savvy


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 2/4/2013 6:38 PM (GMT -6)   
Sorry to hear you are suffering. My husband has TN and has suffered excruciating pain for five or six years. He has taken tegretol, lyrica, gabapentin, and vicodin. His pain was mostly a ten all of the time with few periods of relief.
His pain went away for about a year when he did a lyme treatment in 07.
He had radiation rhizotomy done in 08, he got tremendously ill from the radiation but his pain did subside for about a year without meds.
After returning to meds for a year or so he had a glycerol injection in 2010 with a few months painfree.
He had another injection done in the summer of 2012 and never achieved medfree painfree so he finally had microvascular decompression the end of November. He was able to taper off of all of his meds by early to mid-January. During surgery they found that his TN was wrapped up by small bloodvessels that were basically strangling the trigeminal nerve. There was also another nerve at the base of the tn that was pressing against or wrapped around the tn. The bloodvessels were removed and the other nerve was repositioned and they cushioned the trigeminal nerve with some type of padding.
No medication would have corrected what was causing his pain, we're praying it never returns. Our entire family has been through so much during his illness, it really does affect every aspect of life.
I hope you find relief or are able to manage your pain with meds but sometimes that just isn't possible depending on what is causing your tn pain.
 
Take care,
 
Miss

Ga.peach
Regular Member


Date Joined Jan 2013
Total Posts : 41
   Posted 2/4/2013 6:59 PM (GMT -6)   
Tasaulkah,
Sorry to hear you are having so much pain ad then all the other worries on top of that. I'm new to the site also but just wanted to welcome you to hw. Please keep us posted.
Janet
Herniated disks,spinal stenosis,degenerative disk disease,neuropathy due to a thoracotomy,two spinal cord stimulators permanently implanted for pain

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3541
   Posted 2/4/2013 7:03 PM (GMT -6)   
Just FYI but I don't think the member Tasaulkah has been back since July of last year...

Miss3...I think sharing your story about your husband could really be helpful to those with TN so if you could repost this as it's own new thread, that would be great!

Post Edited (Snowbunny21) : 2/4/2013 6:07:14 PM (GMT-7)

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