So im only 3 months into my journey with TN. During the last month my dr has been working on regulating my tegretol to keep me as pain free as possible. When I told him the pain was so unbearable I could not function to do my daily tasks such as work, go to college, clean my house, and take care of my 6 year old and 3 month old he reluctantly prescribed me 5/325 hydrocodone. He said I could take 1/2 to 1 pill up to 3 times daily as needed. He acted like I was almost faking my condition to get pain medicine (although who could fake this pain, since nobody even knows it exists until they are diagnosed). My pain was so bad the first two weeks of waiting on my tegretol to kick in I had to take the maximum dose daily to let go of my face, stop crying and get on with my day. When I told him I used my whole prescription (I did not abuse it I used the max dose to be able to even pick my head up) which the amount of pills he gave if using the max dose would only last 2 weeks. He acted like I was out for a high or something. I love how these drs can tell me its the worse pain I will ever endure and then tell me to take an Advil. You think I dont try ibuprofen or alieve first before ingesting these liver damaging meds? I dont want to live like this, I want to be normal, but normal is something im starting to think is never coming back. I was the person who wouldn't even take Advil for a headache or cold meds for a cold I just toughed it out. Well I cant tough this out, im weaker than the pain and I just want my life back. If the only way to get my life back is through this pain management then ill do it. I just wish I had a dr that understood how bad I hurt, and how lonely I felt. I wish I had the money to see a neurologist or pain management dr but I have no insurance so everything is cash paid. I am the only one working right now and supporting 4 people off less than 20 grand a year. Im stuck with a dr that tells me to keep taking the tegretol and take an aspirin if my face feels like its being ripped off. Ive had people tell me they would treat you like this but I never expected not from my dr, someone I had so much confidence in. Anyways theres my vent for the day. Has anyone else had this problem? Now he has me feeling so guilty about taking the meds and to scared to ask for them when I need them that I guess ill never have relief if im having a bed day/week/or year. Any advice on how to make them understand? I have good days where I have no pain and then really bad days or weeks where the pain just body rocks me all day. On a good day I dont take a pain pill but on a bad day I do. Im human, I hurt and can only take so much pain :/
I know how you feel! Before I got to a neurologist this doctors had no idea the pain and would give motrin. Id get nore relief from taking skittles! I know its hard with out ins! Im right there with you although I dont have to support anyone else. You HAVE to get in with a neurologist! Its the ONLY doctor that is going to understand this horrible pain. Can you get anyone to help you with hour visit? Have you called around to any in your area to see what the price if the visit without insurance. Maybe they will let you pay a portion then bill the rest? What city do you live in?? Hang on there best of luck!!
I live in Mountain Home, AR. I called human resources to try and get some leads but they said that I would only qualify for assistance if I was disabled. I am so lost im paying 83 dollars a visit to see my family dr ( which is kinda pointless) and im selling everything worth value I have to do that. Ive ran out of options. The pain management clinic said I had a condition that qualified to see them but its $245.00 up front for my first visit then 107 every visit after that. I would still have to see the family dr for my tegretol and so forth. There is only one neurologist in town and they are up to 500 dollars for your first visit and a 2000 MRI. I am to poor for this condition lol. Im getting so depressed trying to cope with this financially and mentally. I never knew how hard life without insurance would be until I had a real problem. I would cope with all if this so much better if I could get it managed but I cant without the resources. Im starting my final year of college and I pep talk myself everyday that I only have one year until I have the money to get this resolved, but one year is an awful long time to live in constant pain!
I'm very lucky that my Neuro is very understanding about my pain and does not have a problem prescribing opiates. When I thought one wasn't working and that we should stop, he actually suggested increasing my dose instead.
However, when I was first searching for my diagnosis, and still hoping it was dental, I went and saw my GP to discuss my anxiety and pain. He looked at me and said, "I'll play along" and it was so condescending. Then he wrote me prescription for some benzos and left. I was in tears and so angry. I took the script and never saw him again.
Like you said, who could make this up?
I am so sorry to hear of your dilemma with your financial situation and the struggles you deal with not only with your husbands health but now your health. Are either of your parents in any situation to help financially? It is hard enough to cope with the pain how this disease/drugs affect your life but to worry about money is extra stress you do not need. Since I am home instead of working now I am able to watch my favorite show - Ellen Degeneres - she makes me laugh and now my teenagers and husband find it cheers their day too. I do not know if you have ever watched it and this may sound ridiculous but if I was in your shoes I would write to her and tell her what you are going through. She has helped so many people who struggle financially.
My mother and best school friend are bipolar so I know the challenge it brings.
What is you dosage of tegretol? Is it controlling the pain now?
I hope that someone can give you better advice but I just want you to know that I am thinking of you.
mommyheather said:
I live in Mountain Home, AR. I called human resources to try and get some leads but they said that I would only qualify for assistance if I was disabled. I am so lost im paying 83 dollars a visit to see my family dr ( which is kinda pointless) and im selling everything worth value I have to do that. Ive ran out of options. The pain management clinic said I had a condition that qualified to see them but its $245.00 up front for my first visit then 107 every visit after that. I would still have to see the family dr for my tegretol and so forth. There is only one neurologist in town and they are up to 500 dollars for your first visit and a 2000 MRI. I am to poor for this condition lol. Im getting so depressed trying to cope with this financially and mentally. I never knew how hard life without insurance would be until I had a real problem. I would cope with all if this so much better if I could get it managed but I cant without the resources. Im starting my final year of college and I pep talk myself everyday that I only have one year until I have the money to get this resolved, but one year is an awful long time to live in constant pain!
Thank you for the thoughts. Luckily my husband has been provided with free counseling through a local mental health place and his meds are only 4 dollars a piece at walmart. The bad thing is he is unable to work until his are regulated because his moods are everywhere. The dr only has me on 200mg a day and im suppose to go back and see him wed to see how its working. Im not sure if going back is even worth it, so I can go pay 80 dollars to be told im fine. My husbands mom is not well health or money wise. She gets like 600 a month in disability so not much help there. My mom helps when she can but she dosnt make much more than me. Both of our fathers are dead and the rest of our families have theri own fish to fry. Im also to proud to ask them for help even if they did have the money so it wouldn't matter much :)
collette said:
I am so sorry to hear of your dilemma with your financial situation and the struggles you deal with not only with your husbands health but now your health. Are either of your parents in any situation to help financially? It is hard enough to cope with the pain how this disease/drugs affect your life but to worry about money is extra stress you do not need. Since I am home instead of working now I am able to watch my favorite show - Ellen Degeneres - she makes me laugh and now my teenagers and husband find it cheers their day too. I do not know if you have ever watched it and this may sound ridiculous but if I was in your shoes I would write to her and tell her what you are going through. She has helped so many people who struggle financially.My mother and best school friend are bipolar so I know the challenge it brings.
What is you dosage of tegretol? Is it controlling the pain now?
I hope that someone can give you better advice but I just want you to know that I am thinking of you.
mommyheather said:
I live in Mountain Home, AR. I called human resources to try and get some leads but they said that I would only qualify for assistance if I was disabled. I am so lost im paying 83 dollars a visit to see my family dr ( which is kinda pointless) and im selling everything worth value I have to do that. Ive ran out of options. The pain management clinic said I had a condition that qualified to see them but its $245.00 up front for my first visit then 107 every visit after that. I would still have to see the family dr for my tegretol and so forth. There is only one neurologist in town and they are up to 500 dollars for your first visit and a 2000 MRI. I am to poor for this condition lol. Im getting so depressed trying to cope with this financially and mentally. I never knew how hard life without insurance would be until I had a real problem. I would cope with all if this so much better if I could get it managed but I cant without the resources. Im starting my final year of college and I pep talk myself everyday that I only have one year until I have the money to get this resolved, but one year is an awful long time to live in constant pain!
If you are still having pain, 200 mg is quite a low dosage so there is a lot of room as the max I believe is 1400 to 1600 mgs per day. Tegretol takes most of the pain away for me but has taken 5 months to get to 800mgs and I am finding I am getting more adjusted to it.
I know what you mean about being proud as I have never asked for anything from my family and my husband and we pride ourselves on what we have achieved at our age and totally on our own. But sometimes life hands us a bad hand and it is more than we can cope with. It doesn't sound like your moms are able (sorry about your fathers) to help, but in your situation don't be too proud to accept anything that comes your way.
If you are still in a lot of pain with 200 mgs it is worth it to go to the doctor.
Keep in touch:)
mommyheather said:
Thank you for the thoughts. Luckily my husband has been provided with free counseling through a local mental health place and his meds are only 4 dollars a piece at walmart. The bad thing is he is unable to work until his are regulated because his moods are everywhere. The dr only has me on 200mg a day and im suppose to go back and see him wed to see how its working. Im not sure if going back is even worth it, so I can go pay 80 dollars to be told im fine. My husbands mom is not well health or money wise. She gets like 600 a month in disability so not much help there. My mom helps when she can but she dosnt make much more than me. Both of our fathers are dead and the rest of our families have theri own fish to fry. Im also to proud to ask them for help even if they did have the money so it wouldn't matter much :)
collette said:
I am so sorry to hear of your dilemma with your financial situation and the struggles you deal with not only with your husbands health but now your health. Are either of your parents in any situation to help financially? It is hard enough to cope with the pain how this disease/drugs affect your life but to worry about money is extra stress you do not need. Since I am home instead of working now I am able to watch my favorite show - Ellen Degeneres - she makes me laugh and now my teenagers and husband find it cheers their day too. I do not know if you have ever watched it and this may sound ridiculous but if I was in your shoes I would write to her and tell her what you are going through. She has helped so many people who struggle financially.My mother and best school friend are bipolar so I know the challenge it brings.
What is you dosage of tegretol? Is it controlling the pain now?
I hope that someone can give you better advice but I just want you to know that I am thinking of you.
mommyheather said:
I live in Mountain Home, AR. I called human resources to try and get some leads but they said that I would only qualify for assistance if I was disabled. I am so lost im paying 83 dollars a visit to see my family dr ( which is kinda pointless) and im selling everything worth value I have to do that. Ive ran out of options. The pain management clinic said I had a condition that qualified to see them but its $245.00 up front for my first visit then 107 every visit after that. I would still have to see the family dr for my tegretol and so forth. There is only one neurologist in town and they are up to 500 dollars for your first visit and a 2000 MRI. I am to poor for this condition lol. Im getting so depressed trying to cope with this financially and mentally. I never knew how hard life without insurance would be until I had a real problem. I would cope with all if this so much better if I could get it managed but I cant without the resources. Im starting my final year of college and I pep talk myself everyday that I only have one year until I have the money to get this resolved, but one year is an awful long time to live in constant pain!
My neuro understands the pain.
I have a hard asking for help or telling people what I need. A piece of good advice that I received was this. If you are pain, say it, and if you need pain medicine, ask for it. No doctor likes to prescribe narcotics, but they will. Whether or not a doctor thinks you/we are drug abusers is their problem, not yours or mine.
What I would do: See your family doctor on Wed and ask to have the Tegretol increased, and to have pain medication for breakthrough pain. It doesn’t have to be a narcotic, but it also can’t be a Tylenol. If he is resistant, then maybe you need to find another family doctor. Also, it doesn’t hurt to call local neurologists to see if they have sliding scales or a payment plan for people with no insurance.
I’m sorry this has been so rough for you.
Yes. Try to remember that everyone is treated like a pill addict now. For me, opiates really work -- the difference between being in bed all day and living a relatively normal life.
Thanks for the advice guys. My husband tells me everyday to call the dr and ask for something that helps or he is going for me. I told him I just hate the way im looked at when I do so id rather buck up and deal with it. Right now im in so much pain the most I can say is uhuh and shake my head to answer. I hate living like this I guess I just need to deal with the looks and ask for what I need...I cant contiunue like this!
I know exactly how you feel.I have been dealing with this for a very long time,probably 15years.I was misdiagnosed until I went to a different Nerologist.I would go to my doctor in so much pain,plus ive been losing so much weight,all she ever did was saying i had a eating disorder because of being so thin,boy did I yell at her and I told her to check my throat and look at my knuckle,I wasnt starving myslef.I was in terrible pain.Plus I do have other health problems,and they still cant figure it out.I had mini stroke and mild heart attack,but no answers why.Now I got to find another Neurologist because this one is not helping at all,the pills arent working plus they cause my heart to race.So now I have to wait until June 14th.I know how you feel about the money it cost to go,im in so much debt from these doctors you wouldnt believe it.Im like you,I dont like taking any pills but with tn you have too.Praying for the best for you.Hope you get painfree days