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Do your research on your meds
Just wanted to give a heads up to everyone that is on medications for their pain, please do you research before you start taking any of the meds your doctor prescribes you. I found out the hard way, I had done some research but not in depth and other doctors I spoke with seemed to down play the possible effects of what can happen if you can no longer afford them. After my wife lost her job we lost our health insurance last October, but was able to juggle things around for a couple of months to continue to get our meds until the first of the year. I went to talk to my pain doctors billing lady and explained the situation and her only reply was well he can't see you anymore then and I told her I could not just stop taking my meds and more or less she said that was my problem. Then a couple weeks later I got the letter saying he could no longer see me. So then I was forced to ride out the problems that sooned followed. Never had I ever had seizures befores, but started having them almost every day. The first one was so bad my wife got scared and called an ambulance even thou I told her not too because the hospitals won't help chronic pain patients and they didn't. They still continue and have also developed another problem called tinnitus, it is so bad I am lucky to sleep 1 hour every 3 days. So please be aware of all the things that can happen if you suddenly find yourself not being able to afford your meds. Oh and the back pain is generally right at an 8 on the 1-10 pain scale.
I just hope they will either go over the audio or read the transcripts from the hearing and then look at the pictures I sent in of the benches at the walmart in question. All I know is between the severe back pain and seizures and tinnitus it has made my life hell. I try not to take it out on my family but sometimes the wrong button gets pushed and I can't take it anymore. This tinnitus causes very bad headaches, I can take 6 Tylenol and an hour later it has not even touched the headache so its 6 more and another hour goes by and another 6 and finally is at a level that I can think. Like I have said before I feel like I am being held captive in my own body and cannot do anything about it.
This is so disturbing to me. Appeals, generally, are about mistakes or errors by the judge and not about something left out of the case. It doesn't seem fair, but that's the law. I really empathize with you on so many levels! Five years ago I had a thumb joint replacement. I had been in so much pain and had done cortisone shots, pain meds, splinting, etc. A second opinion told me my hand was too far gone and I needed a specialist. That surgeon tells me the joint is just totally broken, only surgery will help. I had an implant done, and I was told that "You'll hate me for a few weeks, but within three months, you'll love me." Well, not quite. The implant failed and I wound up with 9 surgeries, RSD/CRPS and in pain management. From there, I was WAY overmedicated, had countless procedures, etc. I feel like my surgeon essentially was all done once there were no more surgeries (my last was a fusion, which, again, would limit my movement but I'd have no pain. Also failed.)
I don't blame the surgeon for the outcome, but I do feel like he turned his back on me. He did agree I was disabled for my case, but used words like "possible" and I need more than that. My primary has given good opinions, as has pain management but I still am very anxious about being approved for disability retirement. The lawyer comes very well-recommended but I feel like I got the best of a bad bunch. All about the money. Which I don't have. I wish I could undo the surgery, though the truth is I was just as bad off then but just in a different way.
I weaned myself, mostly, off a ton of medications and am now at a low dose of oxycodone. Part of the reason I did was because, aside from being overmedicated with no relief, I had gone into withdrawals due to a stomach bug. Never want to feel that again (though I have two more times, once when ill again and once when the pain clinic said they mailed scripts but a staff member had put about 15 patients' scripts in her purse to mail and forgot about them.) Part of me feels like I'd like to stay on extended release pain meds as well as the BT meds, but the other part of me feels like if I can possibly get to using them more on an as needed basis and not be physically dependent, I'd be happier. I don't like the side effects or being dependent.
I wish I had some good advice for you. There's been great suggestions here and I hope you can find something that will help you.
I don't blame the surgeon for the outcome, but I do feel like he turned his back on me. He did agree I was disabled for my case, but used words like "possible" and I need more than that. My primary has given good opinions, as has pain management but I still am very anxious about being approved for disability retirement. The lawyer comes very well-recommended but I feel like I got the best of a bad bunch. All about the money. Which I don't have. I wish I could undo the surgery, though the truth is I was just as bad off then but just in a different way.
I weaned myself, mostly, off a ton of medications and am now at a low dose of oxycodone. Part of the reason I did was because, aside from being overmedicated with no relief, I had gone into withdrawals due to a stomach bug. Never want to feel that again (though I have two more times, once when ill again and once when the pain clinic said they mailed scripts but a staff member had put about 15 patients' scripts in her purse to mail and forgot about them.) Part of me feels like I'd like to stay on extended release pain meds as well as the BT meds, but the other part of me feels like if I can possibly get to using them more on an as needed basis and not be physically dependent, I'd be happier. I don't like the side effects or being dependent.
I wish I had some good advice for you. There's been great suggestions here and I hope you can find something that will help you.
I am very unhappy with my attorney's, I have no phone service as it was shut off, so have to rely on the internet. I did email my attorney's paralegal and she said they had heard nothing from the appeals board and then low and behold the next day I get a letter from the appeals board and my attorney also recieved a copy several days before I had sent her the email, so that tells me someone is not in the loop. My hearing went very badly, the judge more or less called me a liar, a little insight to the hearing, it was a video feed as I was in Boise Idaho and the judge was in Billings Montana. When he ask me how far I could walk I told him when we went to the local walmart I had to set down on their benches inside the store many times, the judge then ask if it was the walmart by our big theater complex and I said yes and he responded he had been there many times and never seen any benches. Also the neuro surgeon that messed up my 2 level fusion would not fill out any paperwork that my attorney requested and my pain doctor would not either. Needless to say when the hearing was done I hate to admit it but I was in tears and have never felt so helpless. So with this last letter I got from the appeals board I went out to walmart and took pictures of the benches and explained what the judge had said. Then about a month after my hearing my pain doctor finally admitted I was disabled and would never be able to work again. My attorney's paralegal said they may not even consider that because they are just going over what went on at the hearing if there were any mistakes made. I never did go to the methadone clinic because pain doctors in Idaho will not see you then. If I can ever get on my feet I am going to skip a pain doctor and find a family doc that will take care of my meds, some will do that, but alot won't. I will admit the seizures while they can be bad and scare the heck outta your loved ones, this tinnitus is driving me crazy. I keep saying I should write a book about all my experiences because I am the poster child for extremely poor care from doctors. I know I will never let another surgeon operate on my back after the last experience. Well have to close as typing is getting difficult, having tremors and can't type very well. Take care everyone.
That is so disheartening to hear that no pain management doctor will assist you with pain management after receiving treatment from a methadone clinic. I do believe you though as many would assume you were addict, when you were not and are not.
I am glad you were able to get your valium prescription. The generic, diazepam is pretty cheap (<$10, I hope?). It sounds like the seizures stopped which is good but the ringing in the ears sounds horrible. You must have had refills on the diazepam from the doctor that will no longer see you? I can't believe the ER will not assist you in helping you perform a taper.
There are also doctors that prescribe Suboxone or Subutex. It won't help with the pain nearly as much but it will get rid of the withdrawal and will reduce the pain a tiny bit. Will pain management doctors also blacklist you for getting a prescription for Subutex/Suboxone? Is it possible to search for other pain management physicians that may be more of a driving distance away but still be willing to prescribe your medications for you?
I am glad to hear that you have started the disability process. Almost everyone that applies are denied the first time. Perhaps it is time to give your lawyer a call and tell him this latest news and that you are in desperate need of medical assistance to see if they could work harder on getting you your medicare/medicaid benefits.
Please don't give up. I know it is hard not to especially with the pain and other side effects wearing you down. Try to do as much as you can by phone while laying in bed until you get a match and then plan on the trip. Ask for confirmation of treatment as you are severely disabled and cannot drive down to places just to hear the words, no. Not sure if you have a fax machine at home but you can fax your health records down to the doctors in consideration. Make sure you have the old pain management clinic release your health records to you so that you have them and know what they say.
I'll be around (less or not at all on weekdays but I will respond). I know you have been trying as your posts show that you have already put a lot of effort into this...don't give up. Try the things I posted and post your results and we will keep working on this until all avenues have been exhausted.
Still in my prayers.
femmy
I am glad you were able to get your valium prescription. The generic, diazepam is pretty cheap (<$10, I hope?). It sounds like the seizures stopped which is good but the ringing in the ears sounds horrible. You must have had refills on the diazepam from the doctor that will no longer see you? I can't believe the ER will not assist you in helping you perform a taper.
There are also doctors that prescribe Suboxone or Subutex. It won't help with the pain nearly as much but it will get rid of the withdrawal and will reduce the pain a tiny bit. Will pain management doctors also blacklist you for getting a prescription for Subutex/Suboxone? Is it possible to search for other pain management physicians that may be more of a driving distance away but still be willing to prescribe your medications for you?
I am glad to hear that you have started the disability process. Almost everyone that applies are denied the first time. Perhaps it is time to give your lawyer a call and tell him this latest news and that you are in desperate need of medical assistance to see if they could work harder on getting you your medicare/medicaid benefits.
Please don't give up. I know it is hard not to especially with the pain and other side effects wearing you down. Try to do as much as you can by phone while laying in bed until you get a match and then plan on the trip. Ask for confirmation of treatment as you are severely disabled and cannot drive down to places just to hear the words, no. Not sure if you have a fax machine at home but you can fax your health records down to the doctors in consideration. Make sure you have the old pain management clinic release your health records to you so that you have them and know what they say.
I'll be around (less or not at all on weekdays but I will respond). I know you have been trying as your posts show that you have already put a lot of effort into this...don't give up. Try the things I posted and post your results and we will keep working on this until all avenues have been exhausted.
Still in my prayers.
femmy
Thank you all for the kind comments, when I was taken to the hospital the ER doctor had the resource nurse come talk to me and the first thing out of her mouth was "it looks like you have used all the resources available to you"
ER's here will not prescribe narcotics, I think alot of ER's are going to that.
Also the ER doctor recomended the methadone clinic but when I called them and explained my situation they told me that in Idaho if you have went to a methadone clinic that no pain management doctor will touch you. Trust me I have tried everything possible. I hired a disability/SSI attorney back in 2009 and so far nothing, had a hearing in June of 2011 and was denied and now its in appeals for who knows how long.
I was able to sell a few of my belongings to get my valium script but it has not helped with the tinnitus and between that and the pain I am in 24/7 its really wearing thin on me, its hard to imagine that the ringing could be so loud that it hurts my eyes and my jaw joints and always dealing with massive headaches. Am kinda at my wits end. But I have sat too long need to walk around. Thank you everyone.
ER's here will not prescribe narcotics, I think alot of ER's are going to that.
Also the ER doctor recomended the methadone clinic but when I called them and explained my situation they told me that in Idaho if you have went to a methadone clinic that no pain management doctor will touch you. Trust me I have tried everything possible. I hired a disability/SSI attorney back in 2009 and so far nothing, had a hearing in June of 2011 and was denied and now its in appeals for who knows how long.
I was able to sell a few of my belongings to get my valium script but it has not helped with the tinnitus and between that and the pain I am in 24/7 its really wearing thin on me, its hard to imagine that the ringing could be so loud that it hurts my eyes and my jaw joints and always dealing with massive headaches. Am kinda at my wits end. But I have sat too long need to walk around. Thank you everyone.
Your story truly touched my heart and saddened me so much. I think all of the posts have very good ideas for you to follow up on. The valium is likely the cause of your seizures. Do not take those seizures lightly, they can be very dangerous. Your wife was right in that she called the ambulance for you.
My only other suggestion would be to go back to your old doctor and ask if he knows of any doctors of pain clinics that offer care for those without insurance. Let them know about the dangerous side effects you have experienced and even ask if they would be willing to help you safely taper off the medication.
Many chronic pain patients have went to rehab clinics for methadone prescriptions as they were unable to find a pain clinic willing to prescribe opioid medications for them. This is truly sad that many chronic pain patients have had to do this.
And definitely begin applying for SSDI. Retain an attorney as many get turned down the first or second time. The attorneys know this and will work your case on a contingency basis. They won't get paid unless you get your benefits.
Hang in there and as others said, be strong and don't give up. You are in my thoughts and prayers.
femmy
My only other suggestion would be to go back to your old doctor and ask if he knows of any doctors of pain clinics that offer care for those without insurance. Let them know about the dangerous side effects you have experienced and even ask if they would be willing to help you safely taper off the medication.
Many chronic pain patients have went to rehab clinics for methadone prescriptions as they were unable to find a pain clinic willing to prescribe opioid medications for them. This is truly sad that many chronic pain patients have had to do this.
And definitely begin applying for SSDI. Retain an attorney as many get turned down the first or second time. The attorneys know this and will work your case on a contingency basis. They won't get paid unless you get your benefits.
Hang in there and as others said, be strong and don't give up. You are in my thoughts and prayers.
femmy
Here is another suggestion. Since you don't have much of an income call your utility companies. I know here in CA they have plans you can apply for that lower the costs of gas, phone and water and power bills for low income. You can usually find out how to qualify on their websites. The money that you save could go towards a visit to a pm clinic and some meds. Most drs offices will let you make monthly payments if arranged in advance and they usually give a discount to cash patients. It's worth a shot, what do you have to loose?? I have heard of medical marijuana cards but that is here in CA. I don't know anything about how that works or if it's offered in your state. I know that you can get medicare but you have to be disabled for quite sometime before you are eligible. I would look into that as well. Seeing a general practitioner instead of a pain management doctor I would think would be less expensive. Get the phone book out and start calling around, someone has got to be able to help or at least point you in the right condition. If you go to a hospital you could speak to one if their social workers who should have some valuable information in helping you with your problem. I would suggest going to a county hospital. I don't think they can turn you away for not being able to pay. We know of someone right now who has cancer real bad and is not going to be walking this earth much longer. He had no home and had to move from a camper shell he was living in in a friends yard because the city made them clean up things. He had no money for morphine or a place to live so he went to county hospital and is staying there now and they take care of him and of course provide pain control for him. There is a way for you to get the pain control you need it's just going to be hard work finding it. Don't give up. Pain is a terrible thing and nobody deservs to live in pain. Be strong and do what it takes to get what you need.
It's hard to imagine you have gone to every Dr. that you possibly can in your state....but I hear your frustration...and it's certainly your choice to give up if you choose...
But why not even try to go to a Dr. as I have found and even get one or two prescriptions to help with your pain....Anything is better than nothing I would think...and if I am only paying $130 per month for 5 prescriptions...I would think you could round up even $50 or $75 a month for a few of them....
What about friends...family....your church....helping you financially?
What about even seeing a regular Dr. for the tinnitus? This shouldn't involve narcotics...but getting help with treatment for that?
What about going on disability? Have you applied for this yet?
Again...there really are only two choices....keep on trying...or just give up completely....I always vote for the former...
I do wish you luck...
But why not even try to go to a Dr. as I have found and even get one or two prescriptions to help with your pain....Anything is better than nothing I would think...and if I am only paying $130 per month for 5 prescriptions...I would think you could round up even $50 or $75 a month for a few of them....
What about friends...family....your church....helping you financially?
What about even seeing a regular Dr. for the tinnitus? This shouldn't involve narcotics...but getting help with treatment for that?
What about going on disability? Have you applied for this yet?
Again...there really are only two choices....keep on trying...or just give up completely....I always vote for the former...
I do wish you luck...
I have exhausted all options, I went to one clinic that based their fee off of your earnings and well being I don't have any money coming in I was very hopeful until they said they don't prescribe narcotics. According to the lady at health and welfare its almost impossible for an adult in Idaho to get medicare or medicaid unless you are deemed disabled/SSI. I was taking mscontin, methadone, oxycodone, gabapentin, cymbalta and valium. I don't know which is worse the extreme back pain or the tinnitus. Like I have said before it seems that users of illegal drugs seem to get more help then chronic pain patients.
Sorry to hear of your troubles...
I have not had health insurance for over 4 years now...Thankfully my PM DR. has worked with me and arranged it to give me samples on all the non narcotics he can...and then we transitioned to all generic medications and the most inexpensive ones at that. And always making sure that I was still getting the same pain control...
So now I am on 5 different medications...
30mg MSContin....(1 every 12 hours) so 60 pills a month
15mg MSContin (1 or 2 a day added in to have flexibility) 60 pills a month
10mg Flexeril (1 or 2 pills a day for muscle pain) 60 pills a month
10mg Ambien (1 at night for sleep) 30 pills a month
5mg OxyIR (up to 8 a day) 240 pills a month....
Usually people would switch to 10mg OxyIR or other medications to take less pills a day but we decided for both flexibility and this is the least expensive way to do it by the generic 5mg being the cheapest....
All of these are generic....and the price is only $130 a month....Which is still a lot but worth it to have pain control.
As well as he only needs me to come in every 3 months and only charges $75 for that appt.....So that also saves a HUGE amount of money...
So...just wanted to give an example of how certain Dr.s will work with you if you don't have insurance...
I would think you could go to the ER and get your previous Dr. to call and let them know about the situation...at least they could give you any meds that you need to help stop the seizures...
As well as the previous suggestions of finding a low cost clinic in your area or getting any type care from the state...
And yes...looking into specific companies that will offer discounts or free medicine...
Hope you can keep trying and get the help you need...
I have not had health insurance for over 4 years now...Thankfully my PM DR. has worked with me and arranged it to give me samples on all the non narcotics he can...and then we transitioned to all generic medications and the most inexpensive ones at that. And always making sure that I was still getting the same pain control...
So now I am on 5 different medications...
30mg MSContin....(1 every 12 hours) so 60 pills a month
15mg MSContin (1 or 2 a day added in to have flexibility) 60 pills a month
10mg Flexeril (1 or 2 pills a day for muscle pain) 60 pills a month
10mg Ambien (1 at night for sleep) 30 pills a month
5mg OxyIR (up to 8 a day) 240 pills a month....
Usually people would switch to 10mg OxyIR or other medications to take less pills a day but we decided for both flexibility and this is the least expensive way to do it by the generic 5mg being the cheapest....
All of these are generic....and the price is only $130 a month....Which is still a lot but worth it to have pain control.
As well as he only needs me to come in every 3 months and only charges $75 for that appt.....So that also saves a HUGE amount of money...
So...just wanted to give an example of how certain Dr.s will work with you if you don't have insurance...
I would think you could go to the ER and get your previous Dr. to call and let them know about the situation...at least they could give you any meds that you need to help stop the seizures...
As well as the previous suggestions of finding a low cost clinic in your area or getting any type care from the state...
And yes...looking into specific companies that will offer discounts or free medicine...
Hope you can keep trying and get the help you need...
I know you have probably thought of this but are there any discounted pain clinics in your area? Can you call the manufacture of your meds and tell them your story. I know with other meds the manufactures were able to send my mother a discount card for some of the medications she takes that cost her an arm and a leg. Also if you could find a cheaper clinic to go to they may be able to change your meds to something more affordable. When I was researching meds for My family member with prostate cancer I was told that morphine was one of the cheapest meds for pain. Don't give up, there has got to be some kind of solution to your problem. I'm sorry you are having problems like these. Chronic pain is a terrible thing.
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