I am suffering from two problems beside the obvious main one and neeeeeeeed help! I'm feeling or in that helpless stage where I'm feeling pretty depressed about it.
Anyway, since all this pain started over a year ago, I have been taking percocet for break thru pain, the 5-325 dose, maybe once a day. I just started Tegretol last week. But I don't know if the pain meds effectiveness is wearing off since I have been taking for so long or the pain is just worse, either way one or 3 pills a day is not helping me have a little time of relief. I used to get a couple hours away from the unrelenting pain, but now it is 24/7. I have tried ibprofeun, aleve, tylenol, hot compress, cold compress, rubbing it (it goes into my face/cheek), but to no relief whatsoever. So I called my internist to see if he could up the dose of pain meds a little bit or put me on something he thinks would give more relief. His nurse called me back and said he does not want to increase. He wants me to not mask the pain, so I know what is happening. I have HIgh DEF MRI Wednesday night and wants to wait and see what that shows. I guess he missed the point in my appointment that I said this is going on for a freaking year!!!! Pretty well aware of what the pain is. It's the doctors who are just now figuring out the pain I am in.
So my question is, what are you guys doing for relief? Is there a natural substance that helps, heat compress, some sort of acupunture? I feel on the verge of craziness not getting an ounce of relief, but I am trying to be strong.
Second fold-
This pain is now radiating down my arm, I have had the ear pain-face pain, head pain, and now it feels like someone wrapped a rubberband around my upper arm and the blood flow is restricted. My hand is colder than the other and it constantly aches. Has this happened to anyone with any explanation?
Thanks all for helping and taking time to care. It means alot!
I used hard core narcotics for my pain, dilaudid and Fiorinal with codeine (migraine drug) to help.
I dont like it at all that you are having issues with your arm, and if it continues, I think maybe a trip to the emergency room is in order. especially if it gets too much to tolerate
I had my MVD and was ready to go back to work, then pain like you describe hit my arms and legs, they are still trying to diagnose (its been months now) but they feel I have an underlying disorder that also triggered the TN. Perhaps something like this is going on with you? Just a suggestion
Yeah, the arm pain is weirding me out. Thanks for your reply. It seems like nothing takes this pain away for even a little time, and it’s just hard to deal.
I’ll let. You know what develops.
sorry to hear your not well and the terrible pain u have been experiencing in your face and arm. I am not a doctor so I can only tell you I went thru something very similar as you a few years back. my right hand was colder than left and had terrible arm and shoulder pain too. I was diagnosed with thoracic outlet syndrome. It is one of those problems that can cause some of the symtoms you are complaining about. my pain went from my hand into my arm , shoulder, arm pit, and breast All these problems come from the brachial plexus which are the upper and lower cervical nerves. Not the neck like a herniation, but from the nerve roots that supply the arm. Each cervical nerve root branches off to different areas of your arm, shoulder, hand etc. There is compression of one of the areas of the plexus that supplies our upper extremity. and I believe the facial nerves can be affected. But like I said I am not a doctor its what I have read and been told by my surgeon that operated on me 2 years ago. My right arm actually on manipulation by doctor showed my pulse would severly decrease. So when you check the pulse it was not the same as my other arm. When I had the surgery he found that the subclavian vein that supplies your arm was compressed , thats why diminshed and cold pulse and arm also compressionof some nerves. Depending on how high the compression it can cause facial pain. What I had ,alot of medical profession have a hard time diagnosing and surgery is not the general course of treatment. I had a good doctor. it has taken a few years for me to recover because I was told 1" per month for the nerve to heal , I was told 3-4 years but althought surgery was rough one because I had a rib removed, it was worth the pain. I do have residual but its tolerable now. Women are more prone to TOS then men are. I am sharing this with you because your symptoms sound so familiar to mine in some respects. I am only sharing info from my experience not to say thats what is going on, because I am not a doctor. Hang in there , if your doctor does not believe you seek out another. It bothers me when doctors think patients may be drug seeking, or the medicine will mask the pain. In some cases pain medicine can mask the pain, but not always. I also found that not all doctors have experience with neuralgias, especially TN. If you are not happy with your doctor get a second opinion, or third opinion. Get someone who will listen. You will find that alot of people in our situation have gone to alot of specialists and finally get to the right one, and the right one is going to help you. Hang in there .Hope my story and information I have read and has been explained to me by my doctor in my situation will help
Thanks so much for sharing. I have never heard of that, but it does sound pretty much exactly what is happening. I have somewhat kept track of my symptoms, and I was experiencing a weaker grip in right hand and tingling. The first ent told me it was anxiety. I need to see a new neurologist asap. I have seen at least 5 ents, internist, one neurologist, but none seem to understand. Now, after looking it up, if it is a rib problem is it because you had an extra rib? Was that your case?
Thanks for the hope. I need it.
tatto20 said:
Hi kerry,
sorry to hear your not well and the terrible pain u have been experiencing in your face and arm. I am not a doctor so I can only tell you I went thru something very similar as you a few years back. my right hand was colder than left and had terrible arm and shoulder pain too. I was diagnosed with thoracic outlet syndrome. It is one of those problems that can cause some of the symtoms you are complaining about. my pain went from my hand into my arm , shoulder, arm pit, and breast All these problems come from the brachial plexus which are the upper and lower cervical nerves. Not the neck like a herniation, but from the nerve roots that supply the arm. Each cervical nerve root branches off to different areas of your arm, shoulder, hand etc. There is compression of one of the areas of the plexus that supplies our upper extremity. and I believe the facial nerves can be affected. But like I said I am not a doctor its what I have read and been told by my surgeon that operated on me 2 years ago. My right arm actually on manipulation by doctor showed my pulse would severly decrease. So when you check the pulse it was not the same as my other arm. When I had the surgery he found that the subclavian vein that supplies your arm was compressed , thats why diminshed and cold pulse and arm also compressionof some nerves. Depending on how high the compression it can cause facial pain. What I had ,alot of medical profession have a hard time diagnosing and surgery is not the general course of treatment. I had a good doctor. it has taken a few years for me to recover because I was told 1" per month for the nerve to heal , I was told 3-4 years but althought surgery was rough one because I had a rib removed, it was worth the pain. I do have residual but its tolerable now. Women are more prone to TOS then men are. I am sharing this with you because your symptoms sound so familiar to mine in some respects. I am only sharing info from my experience not to say thats what is going on, because I am not a doctor. Hang in there , if your doctor does not believe you seek out another. It bothers me when doctors think patients may be drug seeking, or the medicine will mask the pain. In some cases pain medicine can mask the pain, but not always. I also found that not all doctors have experience with neuralgias, especially TN. If you are not happy with your doctor get a second opinion, or third opinion. Get someone who will listen. You will find that alot of people in our situation have gone to alot of specialists and finally get to the right one, and the right one is going to help you. Hang in there .Hope my story and information I have read and has been explained to me by my doctor in my situation will help
Hi kerry, the answer to your question on the transaxillary rib resection, no I did not have an extra rib. My pain started when I fell down the stairs. It came on gradually over months.The reason the rib was removed was to get acscess to the area of compression and this is the approach used by my surgeon. The reason for the arm, shoulder pain with tingling in my hand and I had the clumsies. First that did carpal tunnel surgery which took care of the hand but not the arm pain. My hand would claw from such intense pain. The compression was further up. We did first surgery because the EMG showed compression but did not show further up. Being very smptomatic, with the coldness, dimished pulse I had to have the surgery. I hope that answers your question. Keep me posted and let me know how you make out.
Hello Kerry, you sound like me when I first started. May I give you my option and suggestion please. Pain meds don’t really help with our problem. I was using Percocet and that didn’t keep the pain away so then they put me on morphen. That made me so messed up so we took me off of that and put me back on the percoset 3x a day. The Tegratol is a very base line for TN!!! There are hundreds of those types of meds to try! And of different doses. You and the dr just have to try them. And yes it does take awhile to do it.
I hope I have helped.
Lora.
Thanks for your reply. I have tried a number o those drugs and tegretol, etc did help but I had lymph node reaction so had to be taken off. I’ve been thru the list. Going back thru it again and probably starting lyrica soon.
Lora Tulloch said:
Hello Kerry, you sound like me when I first started. May I give you my option and suggestion please. Pain meds don't really help with our problem. I was using Percocet and that didn't keep the pain away so then they put me on morphen. That made me so messed up so we took me off of that and put me back on the percoset 3x a day. The Tegratol is a very base line for TN!!! There are hundreds of those types of meds to try! And of different doses. You and the dr just have to try them. And yes it does take awhile to do it. I hope I have helped.
Lora.
Hi all, I haven't wrote in a while, I was in terrible shape from the pain from both GN and TN. I was on fentanyl patches and viodan for pain. Which wasn't doing anything except making me a zombie in pain. 2 months ago I switched to low dose of methadone 10mg twice a day and Pamelor (nortryptyline) and my life has changed dramatically! I've gone from my pain levels always being between 7-10 to 2-7 mainly hanging around the 3-4 level which I can handle. I know the pain is there, but the excruciating pain is gone for the most part, I do have it, but much less constantly and just bouts, which I can handle. The bad thing about methadone is that you are treated like you are a drug addict and can only get 30 days to the day filled at a time. But methadone builds up in your system and gives you a even coverage of pain 24/7. I hope this information helps. Its what works for me right now, I still have to be extremely careful and not over exert myself or I can bring on the pain easily, but it is working for me. I have tried 14 different medications and have had 14 different debilitating side effects! I appreciate all the posts and the more knowledge I gain the more I know and know what to stay away from!
I also had pain radiating down my left arm, had an EMG done which showed radiculopathy (pinched nerve). I found out it was caused from spending so much time in bed (rolled up in a ball in pain). I found if I spend more time sitting up, it did help alleviate the pain. It does come back from time to time. Also in addition to my Neurologist, I have found it very helpful to have a Pain Management specialist. He was able to reduce my pain without having me so doped up all the time. He is worth his weight in gold! I may have gotten lucky and found a good one, but I wouldn't trade him in for the world.