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1329719 tn?1275166448

Extreme Pain from Trigeminal neuralgia

I have been back and forth to the emergency room looking for something to help control the pain, this last time I was told "this is an emergency room, not to help you with a pre-existing medical condition." I explained how I am approved for emergency medicaid and it wont be active until the first of June. In which I will be seeking the help of a neurologist. After being fired for medical reasons from my job, I lost all medical benefits. At the time, they were sending me back for multiple sclerosis concerns, since a spot was discovered on my brain stem. Now, I have been diagnosed with Trigeminal neuralgia, after a month in pain. Screaming and wanting to just die from what I thought was dental, when the teeth issue was ruled out, I went back to the emergency room, this time I was put on neurotin, presnindone and dulodid. This all seemed to help for like two days, then the pain was worse. The doctors look at me like what am I supposed to do for you. They basically let me suffer in pain for three to four hours before they tell me off. What can I tell them I need for the pain?
8 Responses
Avatar universal
"... this time I was put on neurotin, presnindone and dulodid   ..."  That seems to be the general RX for TN., the Neurontin wil take some time to get to theraputic levels so more than just two- three days is not a fair trial .    

Unfortunately I also feel that the ER is not the best place to go for this type of cronic pain. They all think all we are looking for are "Drugs" not help.    Check your local phone book for a PAIN Specialist. I am sure they can offer you better choices.  although the same meds are the first option.

While you are waiting for your medicade, you should also apply for disability, and maybe even talk to a lawyer or the labor board.  Your employer cannot fire you for medical reasons, esp if you were beging evaluated for MS.  
485259 tn?1519047026
TN's right, the neurontin etc are not a quick fix for pain and you may not see results for several days, maybe a week or more. IF at all. For me, it did nothing. For others, wonders. You might have to try others... Tegretol, Lyrica, and more. In the beginning you may find it necessary to overlap pain meds with the TN meds until they start to work. Or even after on a bad day.
It's June now, so maybe you won't have much longer until you see the Neurologist. Be sure to keep a journal of your triggers and pain, and perhaps a diagram of where the pain is, and what type (shooting, sharp, stabbing, aching, numbness, etc), how long it lasts, how often you get it, what helps, what doesn't.
Non-medical relief: warm/hot packs that you put in the microwave
cool packs (depending on your tolerance)
sleep (TN usually doesn't fire while sleeping for some reason)
lying down and rest in a quiet place (seems to settle, almost like sleep-sometimes)
soft food, avoid chewing on affected side, avoid opening mouth wide or excessive talking and other triggers
avoid stress if possible
And TN is right, you should not be fired for med reasons, get some professional advice on that also in the meantime and DOCUMENT everything...
485259 tn?1519047026
More non-drug possibilities...
lidocaine nose spray
nerve blocks.
I don't have much more info, but read posts, there are people who do the shots and have relief for up to 8 weeks I think. Something to ask the neuro.
180749 tn?1443595232
Start doing this and you will be glad to have found how to  help yourself. Come back to report your progress, so others may benefit.
To to get relief from Tn trigeminal neuralgia naturally, the full pranayam exercises are described below.You can do this alongside any medication.
This works gradually, so allow time (3 months to 9 months) and concentrate fully on the breathing. Keep a record of episodes and how you are feeling. This will show you a trend.Avoid cold drinks and drink warm water.

Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 10 to 20 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for  15 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 21 times

After you are better, continue the pranayam once a day, to keep the Tn away.
Avatar universal
I take tegretol or sometimes it is called epitol, I have had microvasclar decompression and am going in for surgery again on the 7 of july.  When my episodes get out of control I go to the emergency room and have a cerebyx IV 1gm over 30 minutes it pretty much stops the pain for 6-8 hours however there are side effects you will have to live with.  I live in Hardin MT and go to the doctor in Billings MT I see DR. Obrien at the Deaconess Clinic.  My first surgery was done in Salt Lake and this next one is being done in Portland.  If you would like more information you can contact me

Raichell
1364259 tn?1298661181
I can understand exactly what you're going though because I went through the medicaid fight recently and am now fighting for disability. I was recently diagnosed with Trigeminal Neuralgia and it tokk them months but i was lucky that I found a Neurologist at a university hospital that didn't demand money right away. He put me on Topiramate (Topamax) and Amitriptyline and I have been pain free in my head and face ever since and i am so grateful...I spent 3 months crying and rolling on the floor in agony  before  I got help and got rid of the pain.It's horrible!  I wish you all the luck. I am still fighting because I was also diagnosed with fibromyalgia and now I have a frozen shoulder with a small tear that occured when  I took a fall .....when this all started!  They think it may have been from an infected tooth that started this whole mess.  I hope you get some help soon.
Avatar universal
First off, I'd like to say how verry sorry I am that you're going through this. I understand bc I've experienced it myself. Have you considered going to a Pain Management Doctor? Mine worked with me until we found the right thing for me. It happens to the most powerful opiate out there, but we worked our way up there, since I'm generally opposed to opiates. I'm so desperate to live just 5 minutes without pain... and he helped me. But he also taught me about pain distraction techniques and other lifestyle choices that made a difference as well. I hope you are able to find some relief from this evil disease. I really do. Mine is bilateral and mostly in my eyes and temples and jaw. I hate being dependent on these drugs but at least I've found some relief. I pray you'll be able to as well.
Avatar universal
And yes... I agree with everyone here... Tegretol and Topomax... couldn't live without em! Tegretol saved my life!!!!!! I'm even going to ask my neurologist about BOTOX next time i see him!
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