My son started experiencing a different stabbing pain this past week. Now he can't even lie down at night because the pain is so bad. Have been on Neurontin for one month and it stopped the original pain. He has the pain on both sides so his nuero is convinced it was a viral infection and not anatomical. He thinks it will contiue to go away with brief periods of flare ups. I want to believe him, since the original pain is gone.
It is very difficult to see his personality change when his pain flares up. He is very out going normally, then gets depressed and reserved when there is a flare. Now he can't even lie down at night, sleeps inclined. He even said that if he can't sleep for 2 more nights that he wants to go back to the emergency room to get on morphine again so he can lie down and go to sleep. that will be or 5th trip to the emergency room in the past 6 weeks.
Just venting for now, need to get it out so I can try and stay positive.
Wow I am so sorry to hear that. He is so young and I as a parent know how we suffer when our kids do. I hope you can find a doctor to do test to see if there is some way to help him more. I will be praying for your family. Stay positive. Diana
oh the poor lil man hope they can fix him and help his pain,its so much for an adult to bare the pain but being a child would be so bad,i really feel for ur son i hope and pray for him hang in there xx mina
His name is Stephen. We upped the neurontin last night to 900mg at night, 900mg in morning and 600mg in afternoon. He finally slept last night all night without waking up in pain. His light sensitivity is almost gone this morning. Bright lights had been causing the pain to spike. He says he feels a lot better this morning. I am going to look into alternatives as well, acupuncture, massage therapy etc. Some of his symptoms seem pretty typical TN, stabbing pain. Then others, like the light sensitivity and not being able to close his eyes without pain don’t fit.
It seems he handles the neurontin well, I am glad that it is working for him. I could not handle it. I’m glad he got some sleep, I feel it is very important for people with chronic pain to sleep. Sleep seems to help my pain a bit. You guys are going to always be in my prayers. No one that young should be in that much pain.
Hi Larry, I was sorry to read your post on Stephen. Over the years I’ve had a lot of alternative treatments especially chiropractic manipulation, massage, naturopathic medicine and what has worked for me quite well is sacro cranial therapy. Hang on in there,
Lyn
Thanks Lyn. Since the Dr’s are pretty sure it is a viral cause rather than anatomical, we are looking for ways to control the pain for now until the symptoms go away. Neurontin is working, but we want to keep looking. I will look into sacro cranial therapy.
Larry
It works well for me Larry, leaves me in such a deeply relaxed state its quite incredible (even though my healer is shattered!) However, as with all things, it doesn’t work for everyone, and is often poo-pood by the anti alternatives! Good luck with your findings.
We had 3 good days, then BAM 3:30pm today the stabbing pain came back. And he got sick to his stomache. My son is just so down in the dumps about the pain coming and going. Calling neruologist again in the morning, may take him to emergency room in morning if he is a contstant 10 on pain scale all night long. I just hate to have him in hospital for 4 days on morphine to control the pain, but nothing else works and he is miserable.
Larry
Larry,
I am so sorry your son is hurting so badly. I wished they could do something. I haven’t heard of a virus causing TN pain. I have him in my prayers. I did not understand my pain when it got so bad. So I know a child cannot understand it.
The Chief of Neurology thinks it is viral due to the fact that it is bilateral. to have an anatomical cause on both sides in the exact same way is not documented.
What a frustrating day. Took him to children’s hospital because he had uncontrolled spikes every 1/2 hour. They refused to admit him. said they could not cure his pain with pain meds so best to send him home. Come back only if it is always a 10 in pain for 24 hours. Now why would I let my son be in uncontrolled pain for 24 hours? Time for a new hospital.
That’s terrible, I felt absolutely stunned when I read your post Larry, it’s hard enough for adults to be in such pain and for those around us. When a parent sees their child in uncontrollable pain well that’s something else. Yes, maybe time to look around, kind of a vote with your feet situation.
Going to different hospital in morning. Detailed MRI revealed NO physical cause to this. Therefore, we do not believe it is TN. Need to start over now. Son in tremendous pain for 3 days. We will not let him leave the hospital this time until we know the cause of this pain.