sorry to be adding so many discussions in one day. I read through so many discussions today, and I could really relate to much of the writing.
I am frightened by the fact that so many people take oxycodone, oxytocin, etc. Serious pain killers--and addictive. I am so afraid of this illness. I'm frightened and depressed that I will live with this for the rest of my life. Frightened that there doesn't seem to be any cure.
I am looking for glimmers of hope, but right now, it seems there aren't any. Are there?
Jean-
Are you taking any pain killers now? I have done a lot of research on my own. For a variety of reasons I refuse to take pain killers. We all have those days that are just really hard to get through because we don’t see hope. Try to look at things from a different perspective. There are mannnnny meds. that are not pain killers! Anti-seizure and anti-depressants are commonly used to treat TN pain. There is also alternative treatments like accupuncture, chiropractic, Myofascial release, cranial sacral therapy and even vitamins. There are also other options like surguries or nerve blocks. You just need to find the right combination that works for you! If you want more details on any of the options just let me know. I have literally used them all.
thanks for your encouragement. I start a new job in a week, and I am worried, very worried. I am on neurontin, 2,100. It doesn’t seem to help. When I began taking it, my pain was not severe, but now it is. I’m not sure what happened, but I am afraid the illness is progressing and that my pain will become more severe. My husband keeps telling me not to look ahead, to deal with the present and to pray that the pain will go away. Yes, I am praying. I am not on any other pain killers, just neurontin and flexeril for muscle spasms.
Ally Castellano said:
Jean- Are you taking any pain killers now? I have done a lot of research on my own. For a variety of reasons I refuse to take pain killers. We all have those days that are just really hard to get through because we don’t see hope. Try to look at things from a different perspective. There are mannnnny meds. that are not pain killers! Anti-seizure and anti-depressants are commonly used to treat TN pain. There is also alternative treatments like accupuncture, chiropractic, Myofascial release, cranial sacral therapy and even vitamins. There are also other options like surguries or nerve blocks. You just need to find the right combination that works for you! If you want more details on any of the options just let me know. I have literally used them all.
Addiction...it's a scary thing, true! However, the statistics of someone possibly becoming addicted to any drug is 1 out of every 100,000 people. So, let's do some math: if there are roughly 50 million Americans that are treated with Oxycodone (in some form) and only 1 of every 100,000 of those people can POSSIBLY become addicted then that means 10 people/million are potential addicts. Multiply ten by fifty and that equals 500. Out of 50 million Americans taking Oxycodone only 500 of them are POSSIBLE addicts. Let's look at this in terms of percentages: 0.00001% of all people taking Oxycodone could POSSIBLY become addicted to the drug. Wow! I'm not sure about you, but if my chances of becoming addicted to medication i'm taking is 0.00001%, or one billionth of a percent chance, then i really wouldn't worry about becoming addicted. In fact, to think about it is almost laughable!
In fact, one may only become addicted if they are able to achieve a "high" or "euphoria" from the drug. Oxycodone only merely changes the way a person PERCEIVES pain. Also, people with TN have SO much pain they can't ever get rid of ALL of their pain, even when taking high dosages of Oxycodone, extremely frequently. Because of this fact, one would never be able to achieve this supposed "high" from the medication. Therefore, making it physically impossible for ANYONE with TN to become addicted.
I hope this tid-bit of information helps! Maybe it will relieve some people from being scared to seek help. Don't become another statistic and commit suicide when it can be prevented, entirely! But, if after you do decide to take any pain medication and it does NOT help then there is no worry about addiction since you won't be taking it! Bottom line: don't worry about addiction: 0.00001% chance is laughable!!! LOL!
i totally understand how scared you are. I try not to take anything unless i have to.
I have oxycodone for when its sever and i just need to be knocked out because i physically can't handle it any more. but for the everyday i'm on carbamzapine and i have a non-addictive pain reliever called Tramadol that i can take 3x a day if needed. on that i can still function and do things, it doesn't put me right in bed, if i have to take it more than once i can guarantee that i will need a good nap soon. but it might be worth checking into.
Please don't apologize for adding a lot of discussions - that's what we're here for...information, support and understanding. I was going to reply but CHRISTOPHER SAID EVERYTHING I WAS GOING TO SAY. WHAT HE SAYS IS ABSOLUTELY CORRECT. Just because someone needs pain medication to improve their quality of life and control the pain, doesn't mean that they will become addicted. I know it's very confusing and frightening to have our condition, but I would encourage you to copy and paste Christophers reply to you, print it up and have it available to remind yourself that it's okay and a lot of us are in the same position that you are. You're not alone.
Christopher Rogers said:
Addiction...it's a scary thing, true! However, the statistics of someone possibly becoming addicted to any drug is 1 out of every 100,000 people. So, let's do some math: if there are roughly 50 million Americans that are treated with Oxycodone (in some form) and only 1 of every 100,000 of those people can POSSIBLY become addicted then that means 10 people/million are potential addicts. Multiply ten by fifty and that equals 500. Out of 50 million Americans taking Oxycodone only 500 of them are POSSIBLE addicts. Let's look at this in terms of percentages: 0.00001% of all people taking Oxycodone could POSSIBLY become addicted to the drug. Wow! I'm not sure about you, but if my chances of becoming addicted to medication i'm taking is 0.00001%, or one billionth of a percent chance, then i really wouldn't worry about becoming addicted. In fact, to think about it is almost laughable!
In fact, one may only become addicted if they are able to achieve a "high" or "euphoria" from the drug. Oxycodone only merely changes the way a person PERCEIVES pain. Also, people with TN have SO much pain they can't ever get rid of ALL of their pain, even when taking high dosages of Oxycodone, extremely frequently. Because of this fact, one would never be able to achieve this supposed "high" from the medication. Therefore, making it physically impossible for ANYONE with TN to become addicted.
I hope this tid-bit of information helps! Maybe it will relieve some people from being scared to seek help. Don't become another statistic and commit suicide when it can be prevented, entirely! But, if after you do decide to take any pain medication and it does NOT help then there is no worry about addiction since you won't be taking it! Bottom line: don't worry about addiction: 0.00001% chance is laughable!!! LOL!
All I have to add, is that I couldn't have said it better.
I would just be copying the thoughts of Christopher and Gloria.
There is no reason to be afraid of the medicine you need, if you need it and if you can have this prescribed by a doctor, may give you your life back, as it has in my case.
There are glimmers of hope. They lie in finding a doctor or pain management specialist who understands and is willing to treat your symptoms/pain.
Good luck in finding that. Some have a hard time. But, hang in there.
Best wishes for informed, compassionate and effective care,
Jean, I can also attest to the fact that I was unable to work without pain killers. I was able to work with them, because the pain was not always on my mind.
However, to be more specific, they are not all created equal. Morphine has left me the most clear headed of them all, thus far. Roxicodone for breakthrough pain does not seem to make me a less effective person, either.
It is the Neurontin that I take (just because my I was told by a physician that I would be taken more seriously by a Neurologist if there was something on my script list besides benzodiazipines and opiates, the only things which have brought relief).
Seriously, addiction is the last thing I believe that you have to worry about (besides, there is a difference between addiction and dependency). Pain which would causes your quality of life to be poor, is something I would worry about much, much more.
These are my thoughts, because I would not be functionally raising two little girls, trying to find a school to go to to seek a better career than my old one and writing a book now, if I felt the way I did before I found opiate therapy. I have a new lease on life, and I'm never "high".
I hope you take this in the spirit in which it is intended, to help, and I hope it does.
Jean Mikhail said:
Hi Ally,
thanks for your encouragement. I start a new job in a week, and I am worried, very worried. I am on neurontin, 2,100. It doesn't seem to help. When I began taking it, my pain was not severe, but now it is. I'm not sure what happened, but I am afraid the illness is progressing and that my pain will become more severe. My husband keeps telling me not to look ahead, to deal with the present and to pray that the pain will go away. Yes, I am praying. I am not on any other pain killers, just neurontin and flexeril for muscle spasms.
Ally Castellano said:
Jean- Are you taking any pain killers now? I have done a lot of research on my own. For a variety of reasons I refuse to take pain killers. We all have those days that are just really hard to get through because we don't see hope. Try to look at things from a different perspective. There are mannnnny meds. that are not pain killers! Anti-seizure and anti-depressants are commonly used to treat TN pain. There is also alternative treatments like accupuncture, chiropractic, Myofascial release, cranial sacral therapy and even vitamins. There are also other options like surguries or nerve blocks. You just need to find the right combination that works for you! If you want more details on any of the options just let me know. I have literally used them all.
I'm not trying to advocate, by ANY MEANS, that narcotics are the only answer for treatment. However, many people find they are. And, i haven't met anyone that wasn't fearful or at least hesitant in some way to take, support, or by other means benefit from narcotics. Why wouldn't they? The government puts pressure on doctors not to prescribe them as much as possible. Not only that but there is a HUGE stigma surrounding the idea of taking something that people see police arresting so many for (i.e. heroin) in the streets, in the press, and even on that show Cops.
But, the way i feel about it is: you wouldn't deny a diabetic their insulin, you wouldn't deny an epileptic their seizure medication, why would you deny someone with TN (insert ANYTHING THAT HELPS HERE)? It just seems silly. Especially if you consider this thing is nicknamed the "suicide-disease". However, i think that since TN isn't something that can be "seen" like blood-sugar levels for a diabetic there remains a huge level of subjective thought about how much pain a person really is in. The biggest fear of mine when i speak to my physicians is that they may believe i am faking, for some reason. Or, that they do not see what life is like for me outside of the doctor's office so they may not take my pain level as serious as i would like them to. I am no baby, by any means...but sometimes i think that if i were to throw a huge tamper tantrum someone might have a little bit better understanding. But, i do not want to have to do that. Nor do i think anyone SHOULD HAVE TO. I just want to have my doctor be my friend, someone who truly has my well-being as their best interest, and not someone i have to fight every inch of the way! It's not that i think most doctors are not compassionate, it simply feels that way a lot of the time. Way too much of the time, anyway...