I saw my pain management doctor today. I was trying to get something to relieve the shoulder & neck burning pain.I also described to him the terrible jaw pain I have been having for some time now. A month ago I had a CT scan to check the function of my VP shunt. That all came back fine. My pain doctor told me today that he believes that I have Trigeminal Neuralgia. I am going to include a link for those of you like me that had no idea what it is! It sounds pretty close to what I have been experiencing plus it is related to MS and like conditions. It involves the arteries and veins in the base of the skull pressing on the trigeminal nerve. Do any of you have this condition?
yes i get that type of pain, i get a horrible face pain when i sometimes eat, but it also makes my chest wall spasm, and my esopthagas (spelt wrong) hurt, that it seems food gets stuck,
sometimes i get the pain out of the blue, along my right side cheeck bone and up to my temple, this only started a few months ago, so it quite new to me,
im sorry you are having these pain, its not fun
but im glad your shunt came back fine, so what could be making you feel worse?
I think I am having this facial/jaw pain due to the trigeminal neuralgia. It is a squeezing of the trigeminal nerve at the base of my skull, which is where the Chiari is and the pressure against my nerves. I also have chest muscle spasms and pain in my esophagus. I have acid reflux disease though too so I take Prilosec for that pain and it does help. I am taking a muscle relaxer Zanaflex that hopefully will relax the muscles and relieve the pressure on the blood vessels and arteries in my head. It is very painful and you are describing alot like how I feel too.
Carla
joelene hossack said:
hi carla
yes i get that type of pain, i get a horrible face pain when i sometimes eat, but it also makes my chest wall spasm, and my esopthagas (spelt wrong) hurt, that it seems food gets stuck,
sometimes i get the pain out of the blue, along my right side cheeck bone and up to my temple, this only started a few months ago, so it quite new to me,
im sorry you are having these pain, its not fun
but im glad your shunt came back fine, so what could be making you feel worse?
Carla, I have the facial pain as well. I have to say that that pain is the worst Chiari symptom I have. When it hits I become desperate. It is unbearable…especially when it lasts for days and days. before an MRI found the Chiari the docs said my teeth were causing the pain. I had root canal that failed to stop the pain then I had the tooth removed! Turns out the tooth was fine and chiari was causing the pain. If I ever have surgery that would be the first symptom I would pick to be gone. As I said it is unbearable. One of the principals at my children’s school has trigeminal neuralgia. She gets nerve block injections from Dr. Ben Carson at Johns Hopkins. He is a children’s neurosurgeon but specializes in TN in adults. She was really struggling but he has really helped her. She told me they call TN the suicide disease because so many with it can’t take the pain and the treatments don’t always work. I hope you can find some relief.
I too have Trigeminal Neuralgia. It is by far the worst pain I have ever felt in my life!!!! Mine is on the left side. Whenever the pain comes on it comes on with a vengance! I feel pain in my left jaw, cheekbone, ear and temple area. I tried ice packs, heating pads, Ibuprofen, Loratabs, Tylenol nothing seemed to make the pain go away. I would pace the floor back and forth, lie down and then get right back up. My attacks last anywhere from 30 minutes to over an hour and a half.
I told my NL about the pain and he put me back on the Neurontin that I had been on before. Only this time instead of 600mg I take 1,200mg a day. Since I have went back on the Neurontin I haven't had an attack yet. Thank Goodness.
When I was having the attacks I could have as many as 5-10 attacks a day. I became scared to eat, talk too much, touch that side of my face and I wouldn't go out anywhere for fear of an attack coming on.
Wow. Thanks Jennifer. I am just learning about this, but when I look at the symptoms, it is exactly what I am experiencing. They sometimes do surgery in the back of your head, at the base of your skull, to relieve the pressure that is on the trigeminal nerve. My doctor said the surgery does help, but most people have it come back eventually! UGH! I am trying a muscle relaxer right now. I don't know if it just puts me to sleep and I forget about the pain or if it is really helping the pain, you know?
Carla
Jennifer Hahn said:
Carla, I have the facial pain as well. I have to say that that pain is the worst Chiari symptom I have. When it hits I become desperate. It is unbearable...especially when it lasts for days and days. before an MRI found the Chiari the docs said my teeth were causing the pain. I had root canal that failed to stop the pain then I had the tooth removed! Turns out the tooth was fine and chiari was causing the pain. If I ever have surgery that would be the first symptom I would pick to be gone. As I said it is unbearable. One of the principals at my children's school has trigeminal neuralgia. She gets nerve block injections from Dr. Ben Carson at Johns Hopkins. He is a children's neurosurgeon but specializes in TN in adults. She was really struggling but he has really helped her. She told me they call TN the suicide disease because so many with it can't take the pain and the treatments don't always work. I hope you can find some relief.
Carla, thank you for the information. I too have the same symptoms. It's unbelievable the amount of friends on this site who share almost everything I have been experiencing. I hope you can find relief soon. Muscle relaxers just make me dopey and I've had nerve blocker injections (they didn't work for me) but maybe they'll work for you.
I pray for all of my friends here. We share a common bond that only we truly understand. Thank you all for all your stories. You don't know how much I appreciated you sharing. I feel all your pain and know you're not alone.
I've had the nerve block injections before too. They don't work for me either. I don't know what to do at this point, my doctor said that I am one of the most confusing and difficult cases that he has! He is a pain management anesthesiologist! That's not very encouraging. I am so frustrated with all of the pain and the medications. I want to have one day that is pain-free. It gets hard to ignore the pain day after day after day. Sorry, don't need to be Debbie Downer! I am just really feeling it today:(
we all feel it with you, pain is not the easiest thing to work with, not day to day pain, and nerves are the worst pain out there, i really feel for you, but you are strong and will learn to adjust to it, i know that no one want to hear that, it would be better if it went away altogether,
thanks abby was unsure if it will help, but anything is worth a try,
i had a terrible attack of it today,
i took my pain relief, so two pills, i didnt use enough fluid to swollow them properly, they felt stuck, my chest started going for it, if then devolped to my right side of face, i had to gasp, then i drunk heaps of water as fast as i could, it went away, but my arm and chest and little on my cheek is still spasming, im unsure wether this is trigeminal neuralgia,