The following is a post written by a TCD Patient, who rightfully felt the need to share her own personal thoughts on the experiences she's had, but also refers to some of the more common experiences that TCD Patients Iive with everyday.
I just feel compelled to share this for the post I've read where tramadol had been taken so much it didn't work anymore. I'm not a doctor so I can only go with my own experience with tramadol. I've been on it for almost two years now. For the first year or so I thought it wasn't really helping. And when I think a drug isn't doing me any good, I begin tapering off that drug. I did the same with neurontin. If it isn't helping, then I"m not taking it. I just hate taking drugs. So I'd begin to taper off the tramadol, or the neurontin, and then I'd realize I was in a whole lot more pain suddenly. I went back up to my regular dosage and I was no longer in as much pain. It took the "edge" off as many of us describe it. Tramadol was meant to be taken every day regularly at the same time. I take the full 200 mg a day. I set my alarm clock to make sure I take it at the same time every day. When I was forgetful and not regimented in taking my medications, I had more problems.
I take vicodin. I take it every day at the same time whether I think I need it or not. Do I have a tolerance to hydrocodone after all these years taking it? Yes, I do. I don't get the drugged feeling from it that I used to get. What I discovered, however, is that doesn't mean it isn't doing its job. I've tried backing off the Vicodin because I thought it wasn't doing anything more because I couldn't feel that narcotic reaction. What I discovered is when I backed off the Vicodin, my pain level rose.
So this is the truth--there is no pill or miracle drug that will make us totally pain free. We have Tarlov cysts. There is no way to get around that. There are drug combinations that some of us can take that might help take the edge off the pain. There are others, like Claudine for instance, who cannot take any of the drugs and has had to learn to cope in other ways.
I hope I'm not coming off harshly. I truly am not a harsh person. I tend to call it like I see it, however, and I want to share what I have learned in this last several years.
We are not broken. We are valuable assets to society and to our families. We are excellent role models to our children. Ladies, we are strong and beautiful people. We cope each and every day with pain that would put most people down. Don't hide your strengths!
If you have children, don't hide your disability from them--all you teach them is to hide their own pain and not get help when they need it. Instead, show them how strong you are and how there are times when you are down and times when you are up and that people are valuable and loving and have so much to give even if they can't walk or maybe walk more than a few feet or have to sit down and cry some times.
I
f you have friends who still don't "get it" and ask you to do things you cannot do--kick them to the curb. If they can't see you and love you and believe in you, then they are not friends. The same goes for your family--if they aren't supportive then they need to become that way and fast. And the way they become that is way is by you setting boundaries and saying, "NO!"
I know that I am very fortunate to have friends and family who are supportive of me. I bless them each and every day. I know that I am fortunate to have spent my life in learning what makes me me above and beyond what I "do" and that I am fortunate not to have children who need me. I know it is all scary and some days you wonder if you will ever have another day where you aren't "spoonless". You are all so much more than your pain.
Blessings!
TeriK
Tarlov Cyst Disease is a dreadful and destructful disease, capable of stealing lives and destroying families, but a diagnosis of TCD does not need to mean the end of a life. It can mean so much more... It all comes down to your own personal view;
Is the cup half full? Or Is the cup half empty?
_____________________________________________
Author; Teri K, TCD Patient, California. USA.
I know I don't post a whole lot or even kick in and respond a lot these days. We all know how that comes about. Yes? Because we all go through up times and down times. I do want to say something, though, because so many people are having some real painful down times. Some of us are new to TC and others have been suffering with TC and so many other types of problems for years and years and years. When I was first diagnosed I figured something would come along and make the pain go away. After about 6 months, while I was up at 3 AM, crying because I was in so much pain and it was still 3 hours to my next dose of Vicodin, I suddenly realized how it was that people accidentally OD'd on their narcotics. I also realized how people became addicted to their narcotics--almost anything seemed better than what I was feeling right at that moment. Fortunately, I had my cry and then reminded myself there was more to me than my pain. Over the last 2 years and 7 months of living with TC disease, I've pretty much found a mid-place where I can survive and the drug regimen that
will keep me there.
will keep me there.
I just feel compelled to share this for the post I've read where tramadol had been taken so much it didn't work anymore. I'm not a doctor so I can only go with my own experience with tramadol. I've been on it for almost two years now. For the first year or so I thought it wasn't really helping. And when I think a drug isn't doing me any good, I begin tapering off that drug. I did the same with neurontin. If it isn't helping, then I"m not taking it. I just hate taking drugs. So I'd begin to taper off the tramadol, or the neurontin, and then I'd realize I was in a whole lot more pain suddenly. I went back up to my regular dosage and I was no longer in as much pain. It took the "edge" off as many of us describe it. Tramadol was meant to be taken every day regularly at the same time. I take the full 200 mg a day. I set my alarm clock to make sure I take it at the same time every day. When I was forgetful and not regimented in taking my medications, I had more problems.
I take vicodin. I take it every day at the same time whether I think I need it or not. Do I have a tolerance to hydrocodone after all these years taking it? Yes, I do. I don't get the drugged feeling from it that I used to get. What I discovered, however, is that doesn't mean it isn't doing its job. I've tried backing off the Vicodin because I thought it wasn't doing anything more because I couldn't feel that narcotic reaction. What I discovered is when I backed off the Vicodin, my pain level rose.
So this is the truth--there is no pill or miracle drug that will make us totally pain free. We have Tarlov cysts. There is no way to get around that. There are drug combinations that some of us can take that might help take the edge off the pain. There are others, like Claudine for instance, who cannot take any of the drugs and has had to learn to cope in other ways.
I hope I'm not coming off harshly. I truly am not a harsh person. I tend to call it like I see it, however, and I want to share what I have learned in this last several years.
We are not broken. We are valuable assets to society and to our families. We are excellent role models to our children. Ladies, we are strong and beautiful people. We cope each and every day with pain that would put most people down. Don't hide your strengths!
If you have children, don't hide your disability from them--all you teach them is to hide their own pain and not get help when they need it. Instead, show them how strong you are and how there are times when you are down and times when you are up and that people are valuable and loving and have so much to give even if they can't walk or maybe walk more than a few feet or have to sit down and cry some times.
I
f you have friends who still don't "get it" and ask you to do things you cannot do--kick them to the curb. If they can't see you and love you and believe in you, then they are not friends. The same goes for your family--if they aren't supportive then they need to become that way and fast. And the way they become that is way is by you setting boundaries and saying, "NO!"
I know that I am very fortunate to have friends and family who are supportive of me. I bless them each and every day. I know that I am fortunate to have spent my life in learning what makes me me above and beyond what I "do" and that I am fortunate not to have children who need me. I know it is all scary and some days you wonder if you will ever have another day where you aren't "spoonless". You are all so much more than your pain.
Blessings!
TeriK
Saving 
Thank you for this posting. It really has helped me to look forward.
You have a wonderful outlook on life and amazing insight that you have just passed on to me! Thank you. Best Wishes