I am so tired of being tired and living in pain...it feels like it's getting worse since this all started around January of 2014. I am so miserable right now. I am taking Percocet 10mg and it's not doing a thing. Carbamazepine 200mg 3 x's a day - also not doing anything but making me tired. Lidocaine 4% face cream - it makes my face slightly numb but doesn't do anything to curb the core of the pain. I'm crying, I'm screaming, I'm losing it. My primary doc put a referral in for me to see a pain mgmt. doctor but so far no one says they can treat me. I don't know what to do next....help. Looking for any and every bit of advise I can get. I ordered Strike Back today and would've had it sent overnight but standard snail mail was the only option....
Did you check the Doctor's tab at the top of the page to see if there is one in your area? Have you tried seeing a neurologist?
Hi MaDunk,
I’m so sorry to hear about your struggles with pain, it’s a common theme here unfortunately. Although we all share similarities, what works for one doesn’t necessarily work for another…I can only speak of my experiences with bilateral TN.
When I was first diagnosed, regular old Tegretol didn’t really offer me enough pain coverage, so my doctor switched me to controlled release Tegretol, this worked way better for me. ( something to think about or suggest?)
With TN it’s trial and error with meds…to date, anti-convulsants are still considered top of the line for TN1, there are many, many meds to try and combos of meds that have helped people…
One of our members created this list with the help of our members …check it out
http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion…
I use a reheat-able Magic Bag as heat helps me…it slightly eases the stabbing in my ear, the shocks in my face and the constant pain along my jaw… It’s no miracle but it has helped me and continues to help me feel comforted during my high constant pain days…
I hope you find something soon…be your own best advocate !! AND. Never give up HOPE!
(( hugs ))
shadow2 said:
Did you check the Doctor's tab at the top of the page to see if there is one in your area? Have you tried seeing a neurologist?
Thank You, Shadows, I'm new to this forum and will definitely be checking out the Doctors tab. I have been seeing a Neurologist, my second, but she's difficult to get a hold of and I don't feel like she's been 100% receptive to my concerns about the pain.
Thank you, Mimi. I will check the list of meds and bring this up to my Neurologist. I will also try the heat - I've tried this before but not lately. And before my pain was no where near where it is now, so hopefully that will offer a little relief. I will try ANYTHING if it might make me feel better.
Mimi said:
Hi MaDunk,
I'm so sorry to hear about your struggles with pain, it's a common theme here unfortunately. Although we all share similarities, what works for one doesn't necessarily work for another...I can only speak of my experiences with bilateral TN.
When I was first diagnosed, regular old Tegretol didn't really offer me enough pain coverage, so my doctor switched me to controlled release Tegretol, this worked way better for me. ( something to think about or suggest?)
With TN it's trial and error with meds...to date, anti-convulsants are still considered top of the line for TN1, there are many, many meds to try and combos of meds that have helped people....
One of our members created this list with the help of our members ...check it out
http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion...
I use a reheat-able Magic Bag as heat helps me...it slightly eases the stabbing in my ear, the shocks in my face and the constant pain along my jaw... It's no miracle but it has helped me and continues to help me feel comforted during my high constant pain days...
I hope you find something soon...be your own best advocate !! AND. Ever give up HOPE!
(( hugs ))
There is also a groups tab - you can check for a group in your area and ask if anyone can refer you to a new neuro if yours is not listening/helpful. I'm glad you ordered Striking Back. There is so much information to learn about TN and not too many medical professionals are knowledgeable enough about it.
My recommendation to you would be to find a highly qualified neurologist/neurosurgeon who has extensive experience treating TN patients. There are many medications and other treatments that are available but personally i would work with an expert on the matter. Probably would be wise to get an MRI to see if their are obvious compressions. My TN scenario was exactly the same as your starting with teeth being pulled. I am a big proponent of MVD surgery if your neurosurgeon would feel its something that will work for you. Meds may help relieve the pain but they come with side affects and also have a tendency to stop working as time goes on. You are very young and the younger you are the better for MVD. Huge decision educate yourself as much as possible and God Bless we have all been there and feel your pain.
I was to the point of barely holding onto 3 weeks ago. I couldn’t eat, brush my teeth and just getting up in the morning or swallowing triggered paralyzingly shocks multiple times per day lasting up to 30 minutes each. It sounds like your immediate pain needs to be dealt with first. A good pain doctor and a long term plan can follow once your pain now is stabilized. I went to the walk in clinic 8 times in less than 3 weeks. My life is worth them trying to get me to a state where I can at least function. Carbamazepine gave me hives twice, finally they increased Neurontin quickly. The oxycodone, hydrocodone type medication for me did nothing for my nerve pain. I’m now on 3000mg (I can go up to 3600mg) of Neurontin, 50mg of Savella. Fatigue is a huge problem for me also so my doc is addressing that now. My point is do NOT be afraid to utilize medical services during acute episodes of pain. They should be able to do something to at least start to get you comfortable. Unfortunately with TN it may take a few days or longer. Then look to a long term plan. I took the advise of others on here and I’m going to see not only neurology, a pain doctor, but I’m heading to Mayo Clinic too. I want information and to ensure I’m not only getting the best care but that I have good long term plan. Best wishes.
Like Ed, I'm also a big proponent on MVD surgery. I had the surgery last October after being diagnosed in January 2013 (had the MVD 9 months after diagnosis). I ordered the Striking Back book as soon as I was diagnosed and it helped so much. I went through 2 neurologist, a pain doctor, and 3 neurosurgeons. I ended up having the MVD done by Dr. Ken Casey who co-wrote the Striking Back book. I was on Trileptal to the max dose and then switched to Tegretol XR to the max dose with horrible side effects and controlling the pain mostly at first but then failing even at higher doses. I took a leap of faith to have the MVD surgery after so much research and prayer. I'm grateful for that decision. I'm just about 11 months out since my surgery and am pain free and med free. I feel like I have my life back. Please let me know if you have any questions.
The Migraine medicine IMITREX and capsaicin, Gabapentin/ fluriprofen/clonidine/baclofen/diclofenac/lidocaine compound cream has been working ok. As mimi said the heat pad works good. But definitly what stands out is imitrex for me, I wish I could take it daily. Oh yea, and some cream you can buy at whole foods, TOPRICIN has helped me greatly too. Good luck, feel better. Oh yea, Relaxing my facial muscles! I realize im always tightening up my face because of the pain, but when I relax and stop clenching my jaw, it helps a lot. I can even feel myself slowly clenching while I do the excercise! anyways, feel better