Hello, everybody. I am just so frustrated and ready to give up. I have TN, but I also have Fibromyalgia and nerve damage. Ten weeks ago I had a MAJOR Fibro flair that was so severe I couldn't turn my head from side to side or raise my arms. I was put on a steroid pack that helped, but 6 weeks ago, I also started a TN flair. I always have pain, but I've been having really bad shocks and jabs. I have been having trouble chewing, laying the left side of my head on my pillow at night, touching my face, sensitivity to noise, etc. This flair is so bad my speech is even affected---it is slurred. This is the first time this has ever happened. My left eye is also burning after the jolts of pain and this is a new symptom. I went to a new neurologist last week and he prescribed Carbamazepine/Tegretol that I am taking on top of the 800 mg (4x daily) of Gabapentin/Neurontin that I'm taking. I was told last week that I would receive some relief in "a couple of days", but it has been 9 days and I am still in unbearable pain. I have a MRI tomorrow and the neurologist won't prescribe anything else until he sees it. I am taking Oxycodone every 6 hours, but that is doing nothing for the pain. I cannot keep going like this. My family and friends don't understand and I just feel more than alone right now. I don't know what to do. I'm sorry this is so long, but I had to get it off my chest and didn't know where else to do it. Does anybody else have close family and friends who don't understand what flairs or living with constant pain is like and think you should just be able to "shake it off" because you are strong? This is some of the worst pain I've ever been through in my life and I just don't know what to do...
I'm so sorry you are going through all of this. I struggle with thinking I should be strong enough to "shake it off" but all of us here know what a difficult thing the monster of TN is and I have to constantly remind myself to be nicer to myself. I can't imagine having fibromyalgia on top of that. You are amazing for just being here. My experience with the anti-convulsant meds are that they usually take about 2 weeks before I can really tell a marked difference. Sometimes the narcotics help a little and sometimes I feel like I might as well have taken a tic tac instead. My MRI showed a blood vessel looped around the nerve but there were also 2 additional areas of compression that were found during my MVD that they did not see on the MRI so don't be discouraged by your MRI results if they say that don't find anything... doesn't mean it isn't there, just means they can't see it.
My friends and family are sympathetic but can't really understand. When i'm having an especially difficult day (like today) I come here because just knowing there are other people that truly understand what this feels like is very comforting. Even when we don't have miraculous stories with perfect outcomes, we are able to stand together and know we are not alone. I hope that your doctors are able to offer you some options that may give you some relief. Over the years we have all come up with little "tricks" to distract from the pain. I use heat and ice on my face as a distraction. Also, I sometimes put peppermint oil on my skin which is distracting/tingling and also smells nice. I know these little things are not enough but sometimes we just need to feel like there is some little thing we can do to get through the moment.
You are not alone and I am sending you my prayers. -Laura
Can you get your dr. to call in Lidocaine patches? I think KC will be along shortly to recommend them. I have never used them but it seems to be a lifesaver for many on this board.
So sorry you are going through this. You are incredibly strong and no, family and friends usually do not understand fully.
Huge hugs (((( mimi hen)))),
Most of us can relate to what you’ve shared…
While you wait, try everything and anything to help you cope with the pain, I’m so sorry you even have to do this…it’s not right.
I have found a microwaveable heating pad that helps ease the pain, orajel on my teeth/ gums, and a lidocaine mixed cream I apply to my face.
These are all just short term fixes, it’s finding the right med or combo of meds to try and find relief/ pain management. Unfortunately all these meds take time to build in our systems …something to keep in mind is that some people ( like myself) respond better to slow release versions of the med., something to talk about with your doctor.
Most people can’t possibly understand what we go through. It’s hard, but I feel it’s important to be honest with your family/ friends about what TN really is, and what it feels like. Find some easy to read descriptions to share with them, this has proved helpful for me.
Positive thoughts, I hope you find relief soon, (( hugs )) Mimi
I just wanted to say that I am so sorry that you are going thru such a difficult time! The 4 ladies that have already responded above me have given you great advice (and some of which I would have given also) so I will not repeat :) This is a wonderful place to come and share your story/experiences and/or read up so that you can be well informed and will become your own advocate on getting the proper treatment to help get your pain under control. It may never totally go away, but hopefully you can find the proper medicines/treatment to at least make life more bearable.
Stay strong. You will get thru this, as many of us are. It is a struggle but know that you are not alone!!!! Sending positive energy your way....Jodi
My heart goes out to you. I would bet to say that everyone one of us on this site has atleast one key person in their life that doesn't understand what we are going through and expects us to just "shake it off". It can be frustrating and overwhelming. I was diagnosed last summer (although I have had episodes for 10+years undiagnosed). TN is not like cancer, where you can tell someone you have it and everyone will feel compassion for you because they know that cancer is a serious illness. TN is not like a broken bone or a burn where everyone can see what is wrong and have compassion for you. I have had to change my thinking about myself and how I feel. If I feel bad... then I feel bad, end of subject. Just because someone doesn't believe me doesn't mean it is not happening. Taking that attitude does not make their attitude hurt any less, but you have to do that for self preservation. Otherwise you will push yourself too hard and end up feeling worse. Lean on those that you can and lean on this site too. We are all here for you to vent to. And we DO understand your daily struggles and we DO have sympathy. It will get better. You just have to find that right combination of medications to kick it in the butt. I pray that you get some relief soon. Lots of hugs. Kristin
I hope you find relief very, very soon. Dealing with TN plus fibromyalgia and nerve damage - you are a very strong person! I don't have any great advice or magic cure (I wish!) but I just wanted to let you know I'm thinking about you and pray you'll be out of pain soon.
Perfectly said Kristin. I had cancer 12 years ago and I was a single parent at the time. I needed peace and quiet with just my kids around while recovering from surgery but people wouldn't stop calling or coming over. There was almost too much sympathy and support. Educating family and friends on TN has been a lonely struggle. Two years down the road, there is finally understanding from most of them.
Just wanted to add something about what I wrote earlier. I was very grateful for all the support I received from well meaning friends/family/co-workers 12 years ago when I had cancer - BUT my point is when I said the word "cancer" people were running and jumping and panicking. Nothing was too much trouble. With TN for a while I felt abandoned by all - even those closest to me.
Obsidian said:
Perfectly said Kristin. I had cancer 12 years ago and I was a single parent at the time. I needed peace and quiet with just my kids around while recovering from surgery but people wouldn't stop calling or coming over. There was almost too much sympathy and support. Educating family and friends on TN has been a lonely struggle. Two years down the road, there is finally understanding from most of them.
Sending love Kimberly I understand totally. Everytime u can’t imagine life getting worse life ups the bar. I don’t have any answers Kim just know I’m trying to do the same and thinking of you. Xx