Things I Do To Manage Pain

I am a terrible patient. Thank God for my Neurologist! She is open to suggestions I have read or heard about that makes my life better. Ever so often I do try the usual meds for Atypical Trigeminal. You name it I have tried them.

My hubby has purchased various tins machine that easily lulls me to sleep at night. I do yoga, I take walks, I have two dogs that love me and get me out of bed each day, I garden and war with the deer over eating my plants. I use a 4% lidocaine solution in a spray bottle that numbs the pain on the side of my face, under my eye and nasal cavity. I also use a 3% licocaine syrup that I place on my gums to numb the pain when it feels like I have a tooth ache. Both of these are prescription.

I am able to manage and am holding out on any surgeries since I am going to have this for along time and as long as I can manage I will continue to hold off going under the knife.

I laugh at my tics and try not to embarass my family with them.

Knowing that others are not isolated and living productive lives gives me hope. Also just knowing you are not crazy fabricating this pain makes it less destressing.

Dear Ernette,

That is a wonderful blog post you've given us and it's always lovely to hear how others are doing well to manage this monster of an illness!

I feel a kinship with everything you've said here and absolutely agree as I live a similar lifestyle as you do - however, I do not have to fight with deer in my garden :-) we don't have wild deer here in Australia.

I also have dogs, four of them :-) and they keep my life happy and busy. I train my dogs also and perform in dog sports such as Agility and Sheep herding too. I keep gardens, chickens & ducks though I do not have such a loving husband - in fact I live a single life with no companionship at all, though I am happy with my life and living comfortably with acknowledgement of how my life is, yet I too will still fight in my own way to continue finding new or different methods of treating my TN.

Having people and friends like yourself here on living with TN makes me feel very proud and happy to be a fellow member of such a wonderful community as we have here! Thank you for writing today about how you manage your pain. I enjoyed your post so much, I have featured your discussion on our site :-) I hope you don't mind?

I will have to ask my doctor about this lidocaine spray and syrup solutions you are using, do you find they help you much? I would love to have a working pain medicine to try..

Thank you again Ernette!

Cheers,

Kerry

Kerry,

Thanks for commenting. I am amazed at the kinship I have found here on this site. I nod my head as I scroll through the various posts . All I can do is say I have been there done that. There are new things to try but I try to find balance with my meds and the lifestyle I want to live. Presently I am taking nucynta (75mg) three times daily and triliptial (900 mg) three times daily. Recently I dropped Cymbalta (50mg) - that is another story. The combo worked but as I said I am a bad patient. My pain has been a little higher but I am about ready to get used to. I know higher dosages would probably make my pain much better but the quality of life would not be so good.

If I avoid the pain chase I am comfortable - never pain free. I have a suitcase of other meds for bad days when I can't stand it any longer. I call these meds my break glass protocol.

My take on any treatment, these oral meds are worth trying. Lidocaine spray (comes is a bottle and I put it in a nasal spray bottle) is used to numb my nose and surrounding facial area. It also numbs the roof of my mouth and that's a good thing too. The syrup helps numb the gums, roof of mouth and facial nerves for a short while. Since my rhizotomy I have pain and a numbness in my face under my eye and above my upper teeth that can be annoying.

While not perfect, a few squirts offers some comfort and the syrup numbs too. I use cutip swabs to apply syrup.

These two items helps to slow and bring down the pain meters so that I can keep moving.

One good thing I have noticed is that everyone is receptive and appear to have positive attitudes. I plan to read all of the posts and offer any positive feedback that may help others.

Take care. By the way, I love chickens! My dogs are yorkies.

Kerry said:

Dear Ernette,

That is a wonderful blog post you've given us and it's always lovely to hear how others are doing well to manage this monster of an illness!

I feel a kinship with everything you've said here and absolutely agree as I live a similar lifestyle as you do - however, I do not have to fight with deer in my garden :-) we don't have wild deer here in Australia.

I also have dogs, four of them :-) and they keep my life happy and busy. I train my dogs also and perform in dog sports such as Agility and Sheep herding too. I keep gardens, chickens & ducks though I do not have such a loving husband - in fact I live a single life with no companionship at all, though I am happy with my life and living comfortably with acknowledgement of how my life is, yet I too will still fight in my own way to continue finding new or different methods of treating my TN.

Having people and friends like yourself here on living with TN makes me feel very proud and happy to be a fellow member of such a wonderful community as we have here! Thank you for writing today about how you manage your pain. I enjoyed your post so much, I have featured your discussion on our site :-) I hope you don't mind?

I will have to ask my doctor about this lidocaine spray and syrup solutions you are using, do you find they help you much? I would love to have a working pain medicine to try..

Thank you again Ernette!

Cheers,

Kerry

WOW!! YOU SOUND SO HAPPY! AM SO HAPPY FOR YOU ,

GOD IS GOOD !!

Thanks for all the info.Where ca I get lidocaine ?I need it for my theeth and ear pain.Thank you

ps. Do you work,if so how do you manage? Rose

I really need to know how to deal with this and still work. I have a hard time with my memory at work. Does TN affect memory or is it just dealing with the discomfort that keeps me distracted. Any helpful suggestions wanted. I have just been diagnosed and am glad to know there is a name for what I have.

Chronic pain is a distraction. What kind of meds are you taking? Most med (anti-seizure) depending upon the dosage and your tolorence can cause memory fog.

I was unable to work and had to retire because I could not balance work with pain management and my medication.

Bless you. Get a good neurologist and an understanding support system. Keep us posted.

Thanks for the reply- I have my first appointment with the neurologist in 2 weeks - The eye doc that had been treating my pain from shingles (the supposed cause of the TN) referred me after making an initial diagnosis yesterday. Is there any questions I should ask neurologist? Does the pain keep getting worse with each episode?

Had the worst one this week. Thanks so much I have felt kind of alone until I found this group.

Read some of the other posts - there are others who have been very through in blogging their journey. Most are optimistic and very knowledgeable.

Keep a journal of your pain levels and locations. Try to communicate the initial onset of pain. You should seek a definitive diagnosis (TN vs ATN) and the optimal treatment plan.

Hopefully your neurologist will be willing to work with you and offer treatment that will enable you to function and control your pain medically initially.

Remember this ride is most likely to be a journey rather than destination. Try to find ways to manage the peaks and valleys.

Sounds hokey - but I seek out the pretty things (stuff that make me happy) in life each day. I avoid stress and I do a lot of deep breathing.

Yoga or other forms of meditation helps. Sleep is comforting too. Take a nap!

Praying you all the comfort possible.

I have some lidocaine gel for another condition, and just now I rubbed it on my temple, jaw and in front of my ear...I'M AMAZED! I don't know how long this relief will last for, but I think I've discovered something good! Another friend tells me that natural Arnica gel helps her. I just want to shout about lidocaine from the rooftops. There is even a lidocaine patch that you can put on the area, but lidocaine has to be used carefully, it can cause heart beat changes if too much is used. We need to find a way to tell everyone about lidocaine.

Glad you posted this Ernette!
Sheila

Things to do to manage the pain:

  • Meditation and relaxation techniques
  • I cannot go outside because of the wind
  • Acupuncture
  • I use tiger balm on my face, seems to releave the pain a little bit
  • Make a strict schedule for the medicine and follow it. I have put it on my cell phone with reminders that ring each time with the name of the meds i need to take.
  • try to forget about the pain by doing thing

Carolina

Hi Ernette

I have ever heard of Lidocaine does this work? how long does it work after spraying, how much does it cost? did you try any other medications before this? Thanks for answering Marcy

Where do you get the lidocaine?

I got lidicaine patches, but they do nothing. Is the gel better?

Hi Ernette, I am very interested in the lidocaine spray you wrote about. I am trying to hold off my MVD surgery until September when I have vacation time coming, but perhaps this could help me in the meantime. I am a singer and as you can imagine, I have trouble masking my pain and putting on makeup is very difficult. Just lately, the pain is very bad under my eye, so makeup and sunscreen and just a breeze sets it off.

It is a prescription? How long are the effects?

Thanks so much for any info you can tell me about.

Sally

You can get the lidocaine patches and gel from your doctor they are prescription. They worked for me in the beginning but now since my TN has progressed they no longer work for me. The patches need to be placed on your face and left on it for at least 12 hours on 12 hours off and it takes about 3-4 weeks to realize the full benefit. The gel numbs you instantly. I keep it on hand for when my tongue and gums get involves and it has worked for REAL dental pain.

I have also used Capcacin cream and a patch called Quentenza. The Quentenza has to be done in your doctors office it is so strong with hot pepper cream it burns the heck outta the area it was placed but the burning goes away within hours and you are left PAIN FREE! Yes pain free for 3-4 months then you need to reapply the patch. You need to be put under for the patch to work cause it is so painful on the area it is applied to you would not be able to stand it with out being under anesthesia. But IT WORKS!!!!! It works for PHN and Atypical TN patients.

Hope this helps everyone.

I am so glad to hear people are thriving with this disorder/disease I used to be able to work and get around but mine has gotten so bad that I am going to give the Gamma Knife a try. I will post my progress for all to see.

God Bless

laurie

Hi Emette,
I am very new to this site but just know that you can hold down a job because oi am doing it. I am a nurse currently on lunch break,

I had the MVD surgery last June and am glad to report I am pain free. Face is still numb, but it is a trade I am gladly making, and the feeling may come back in time. I am back to the person I once was, and am grateful everyday for my surgery. I can now realize the extent that TN crippled me and my life. Drugs only worked so long…then didn’t work at all and I lived in fear of an attack. It is so difficult to convey these feelings unless you have had them. This forum is so great for people trying to live with TN.
Good luck to all,
Sally

Sally, Is your face still numb? Did you ever find out if you had Atipical TN or Typical TN?

sally langer said:

I had the MVD surgery last June and am glad to report I am pain free. Face is still numb, but it is a trade I am gladly making, and the feeling may come back in time. I am back to the person I once was, and am grateful everyday for my surgery. I can now realize the extent that TN crippled me and my life. Drugs only worked so long....then didn't work at all and I lived in fear of an attack. It is so difficult to convey these feelings unless you have had them. This forum is so great for people trying to live with TN.
Good luck to all,
Sally

Hi Mitzi, yes my face is still numb, but I am getting used to it now. I have a bit more feeling in my mouth area and cheek. Mostly my right eye is the most affected, but it does not look funny…just feels strange.
I am not sure about the difference between the regular and the atipital…just knew it was unbearable. So thankful there was a surgery to give me back my life as I knew it.
Sally
If you want to describe the 2 types, I can probably give you a better answer.