Utilizing Opiate therapy

1

Hi Everyone,

I am new to this support group and I am having an issue with my current pain mgmt doc and don't know what to do. I almost didn't post this because as Johanna said in her post I too am uncomfortable that I have to rely on Opiate therapy to get thru each day to do chronic ATypical type pain.

I have been diagnosed 10 years ago with Post Herpetic Trigeminal Neuralgia 5th cranial nerve v-1 and v-2 sections left side of my face only. I have been on some type of Opiate therapy ever since. My problem is a little different in that I have everyday pain but I get intolerable 10+ pain when I get a breakout of fever blisters. The shingles/HSV-1 virus has wreck my life. It lives in the Trigeminal nerve and stays dormant until times of mental, physical or psycological stress. Sometimes they come and I have no idea why. I get the lesions in my mouth, nose, lips, gums, tongue and now on my left eye lid 2-3 times per month. My last Neurologist was no longer going to handle Chronic pain mgmt, So I was referred out to a pain mgmt clinic. Well the clinic was 1 doctor and 1 receptionist who does everything the doc needs from helping him thru a procedure to doing the book keeping and answering the phones. Needless to say it is IMPOSSIBLE to get thru to a life person. I have to leave at least 3 messages over the course of a few days and then pray I get a call back. So I was told to fax her on those occasions and she would call me back.

I go monthly and in March I went in for my monthly visit and I was asked as usual what my pain level was and at that particular moment I had just taken my afternoon meds and I had no pain at that time so I said none. Isn't that what the medication is suppose to do neutralize the pain? My doctor immediately lowered my pain medication which is Methadone from 150 mgs per day to 90mgs. Well needless to say I went into withdrawals and my pain was out of control for the days that followed. I left numerous messages and after not getting a call back I faxed the doctors office. I finally got a call back telling me I could take 1 more pill. Wow! that really did the trick! So I suffered thru the month.

In April I went into his office a few days earlier than usual because he had me take the extra pill so I was going to be out sooner than usual and I needed to discuss an experimental treatment I had allowed hi to use on my face in January (Quentenza) and he was pushing me to do it again so we needed to discuss it before I would consent. On that day my pain level was bad , shocks searing pain in my cheek and my eye socket and the left side of my tongue was shocking on a regular basis. I told him my pain level was a 9/10. He started in on questioning in on why had I faxed his office? What was the BIG problem? I started to tell him and he cut me off and started with well we need to have "that talk". He proceeded to talk to me like I was a drug seeker and was utilizing my meds to get high. I was so shocked all I could do was cry. He came at me outta left field. (this is the reason I almost didnt post this, just typing it for all to see makes me feel dirty and like I have done something wrong.) None of you know me, but I can guarantee you I am NOT some addict. I coulnt belive what I was hearing I never even defended myself I was just sobbing. He had some plans on how to detox me with some drug that he said would "rock my world" Come to find out it is a drug that makes you sick and non responsive to Opiate therapy for pain relieve. He did however refill my script for way over the amount I normally take and in his chart notes he said I was completely out of my meds. I opened up my medication bottles to show him I was not out of pain meds I counted out to him showing him I was only short what extra he authorized me to take. Oh Yea, the last thing he said to me upon exiting his office "I dont do frantic faxes!" I have re-read my fax over and over and it isnt frantic at all. I was a little upset about not getting a call back but it was NOT frantic.

Upon my return home his 1 nurse/office asst called me and was whispering into the phone that I didnt have to do anything he wanted that I could do what ever I wanted. She told the doc that she had told me to fax when I cant get thru, which is true and she advised me to get a new doc that he was mistreating me. She said she would get 6 months of chart notes together and to take them with me to a new doc. I went home and cried for 3 days, I went into a deep, very dark depression that lasted 5 days. I am finally coming out if it and able to stand up on my feet and stand up for myself. And I would appreciate any one's advise. I have made an appointment with a surgeon but after talking with Red and doing some research us Atypicals really dont have a lot of success with surgery and being that my pain is casued from post herpetic neuralgia is even worse.

So What do I do? Do I look for a new pain mgmt doc. Is this doc going to blackball me and make me look like an addict in his notes cause he is mad at me over a fax. I have been made to feel like I am less of a person cause I have to have pain meds to function. I feel dirty, inadequate, and depressed because I have to live on Opiates. Will come across like a drug seeker when I go to a new doc? I cant believe what is happening and I really dont know what to do. Should I just cut the damn nerve so I dont have to deal with this kinda situation ever again. I mean this really hurt me. I have let this pain doc try all kinds of experimental therapies on my face, I let him cut into my face and implant a tens unit, I let him apply a 20% Hot Pepper cream patch to my face that burned my face so bad I felt like I was on fire while I was under Propofol only to be treated like a drug seeker. I mean really would I go to that far for some pain meds? He told me on my first visit he understood it was the suicide disease and the worst pain known to man kind. I guess its my fault I shouldn't of faxed his office asking for a return call but he said to me upon my exit "If you have any problems we are here for you, just give us a call" I am hurt and feel hopeless anybody have any ideas on what to do. Do I just call other pain clinics and tell them my story? Do I make another appointment with him and defend myself since I didn't, I just cried. I feel beat up, wore out and done but what do you do? Every morning I wake up and guess what ITS THERE LEFT SIDE FACE PAIN FOR 1O YEARS! HELP any ideas would help me.

Trying to hang in there but totally confused,

laurie

2

Thank goodness for such a great nurse. I agree, find a new doc. You can pick up the records and read them, they will have lies and insults on them, from the sounds of it, and you tell your new Dr. that you are looking for a new doc BECAUSE he was writing lies, tell him the nurse even admitted you were being mistreated, and tell him the story of how you SHOWED him how many pills you had left when he wrote down you were out, and that you are NOT a drug seeker, you are embarassed to even have to take this medicine, and that you do not abuse or over-use your medicine, that this pain is unbearable. You don't have to tell the old doc who you are going to in the future, so the old doc won't even know who to talk to about you if he has anything bad to say.

Best wishes, Sheila

3

thank you Sheila, I still am in a state of shock. I take things hard......... I try and be the best possible person I can be everyday and to have this happen was just so heart breaking. I would never lie, cheat, steal. Nothing illegal especially to do with the only relieve I have gotten from this pain is a medication that I guard with my life. It just made me feel dirty... like a drug seeker when all I want is to be able to get out of bed and get around without and ice pack on my face all day. My TN is extremely bad. I think along the levels of your. I have read some of your posts and we both have it bad. Have you tried any surgeries? I think I remember your story about some of your surgeries am I right and if I am can you elaborate? I have atypical caused from the shingles/hsv-1 virus that is still active. So everytime I get a new cold sore or shingles the virus escalates to over the top. It is incredible how painful it gets. I have to do something. Now I think this old pain mgmnt doc is gonna black list me here in Sacramento. I am so upset. which makes it worse.

any thoughts would be appreciated. and thank you for replying.

laurie

4

Oh my gosh Laurie... I have tears in my eyes reading this. I feel so much the same way. Our stories are very similar. Thank you for posting. When I posted my discussion I also felt dirty, untrustworthy and embarrassed. I feel that way everytime I have to call for a refill, when I take my medication or when I discuss it with friends. It is so frustrating to know that there are many people in the world who do abuse these meds and who have taken away our ability to have dignity when being prescribed them.

I feel guilty for taking these medications. Though, I have never had any problem with them I am terrified all the time of losing the option as the combined therapy I am on now is the one that has worked the best. I have asked to reduce my meds many times as I don't want to be hassled anymore. Those reductions have caused me a lot of additional pain but I can't stand the guilt and embarrassment of taking them. As I mentioned in my discussion post; I have not drank, have never abused drugs and told my doctors to take me off of Lorazepam due to the side effects and my reliance on it to help with anxiety (anxiety disorder) and my dad's death. Despite all of these things I still feel like a criminal.

Due to my past history, I have much difficulty. Like you I am looking for a new doctor. I have an appointment today and have been crying/anxious for the last five days as I am incredibly worried about the opiate issue and whether or not she is familiar with ATN.

Red was kind enough to write me a letter regarding ATN and treatments. I am bringing it with me to my appointment. Yet again, I will have to disclose my past and hope that it does not dictate my future.

You are so lucky to have the nurse at his office on your side. Perhaps, asking her to speak on your behalf when you make a new appointment with a different doctor will help. I will let you know how my appointment goes today and if I feel like it will work out for me.

Again, I am so sorry you're going through this. Keep your head up as far as you can. Anytime you need to chat with someone in your shoes I am always available. Take care. Jo

5

Laurie,

I think anyone who requires opiates to control their pain for an extended period of time and has dealt with a few doctors has likely run into such a scenario, so do not feel alone, or as if you have done anything wrong.

Many doctors do not understand the concept of addiction vs. dependency. The medications are made for pain management. Therefore, they should be used for their intended purpose.

Methadone is a viable treatment for some people with TN and ATN. But, like any drug, it isn't right for everyone.

I have no idea why he would reduce your dosage because you sent a fax to his office. Knowing what the consequences of reducing your dosage of Methadone quickly and drastically, would lead me to believe that, he either, 1) doesn't know enough about the drug to be prescribing it, or 2) is not compassionate enough to be practicing medicine.

I've been in the office with six different Pain Management Specialists. Only one comes close to giving me the best care possible. So, I followed her to a different office whenever I was faced finally, with a doctor, who obviously knew nothing about my condition, nor did she believe that opiates had any effect upon TN. Well, they are not for everyone, but they have saved my life, I do believe. I do not know where my family and I would be if it were not for them. I had gone as far as I could without any pain pills when I finally reached out for PM Clinic.

As far as I can tell, Atypicals respond well to opiate therapy. Since the options for Atypicals are more narrow than for those with Type I symptoms, I never feel one bit of guilt or shame for using them as tools to live, to be an effective mother, to work, to keep myself organized, none of which I would feel like doing if it weren't for opoids.

Recreational users irk me. They are the reason why the D.E.A. has put the heat on the doctors not to prescribe pain medication for those in pain. It is very sad. In fact, just today, a friend of mine was denied opiate therapy. For her, like me, it is the only reprieve ever from severe chronic intractable pain!

Please never let them make you feel ashamed for needing what you need to control your pain. Do not allow your pain to be dismissed. Use whatever legal means necessary to gain/maintain quality of life and to heck with what your doctor or anyone else thinks.

If a patient can be maintaned without opiates, great! In fact, whatever works, if it is standing on their head shooting firecrackers from between their toes, they should do that, if that is what it take to get them out of pain! Pain is the enemy. If left untreated, it can lead to more pain. Since you speak with Red, he can tell you about how that phenomenon works, as I feel I am getting a bit wordy here.

You've done nothing wrong!

God bless, hold your head high and hang in there!

Hugs,

Stef

6

I think it is time to seek out a more caring physician, if he cannot do what he needs to do to control your pain and yes, I do agree that you have been "mistreated".

However, if you do not think any other PM docs in your area would be open to prescribing Opiates for ATN, then I may would stay put.

To find any doctor who actually believes that TN is helped by Opoids, or one that even understands ATN, is a rare find.

Use your best instincts about him. Your instincts about a doctor usually aren't wrong. Mine aren't, I've found.

7

Hi all.

On Monday I had an appointment with a new GP. It went well, for the most part. She was very positive, kind and empathetic. She is not very knowledgable about ATN or TN. This is disappointing. She is definitely not a fan of pain meds. This is due to the fact that she doesn't believe that they are effective for nerve pain and that I am taking close to the recommended limit (I take the equivalent of 65 mg of MS Contin, including the percocet, per day). She is willing to read any information I provide her on ATN. She will simply be my healthcare coordinator. Her goal is to help me to be more functional and healthy overall while trying to manage the pain better with my realizing that I will not be pain free.

However, she is giving me a refferal to a new neurologist (I don't have one right now). So, we'll see what happens. I am more than willing to no longer take pain medication as I feel so guilty and bad about taking them. Tired of the stigma of drug seeker no matter how responsible I am and it isn't worth it to me to feel this way. Over the last 2 weeks I have had an increase in pain. I am really nervous that the maintenance meds I am on right now are no longer doing the trick. I am getting some relief from percocet (1-2 5 mg per day depending on pain level). I have around 20% relief from some types of pain so I have always thought that all the flack I get for pain meds is worth it to get a small amount of pain relief.

I am really hoping that the new neurologist will come up with a good plan for me. I'll let all of you know how it goes. I couldn't get an appointment until late June.

Any input on all of this is greatly appreciated. Laurie, I hope this gives you some hope in some way. Thanks for listening and sorry for the long post. Take care. Johanna

8

I'm outraged that a medical "professional" treated u like that!! what a prick. I would get a referral from my family doctor to a new pain management clinic. And in the meantime i would go and see that other pain doctor and see if he doesn't apologize. Don't stick up for urself or apologize just go see him. He might realize he was wrong. Maybe his assistant gave him shit for treating u like that and he is waiting for u to come back to apologize. And if he doesn't apologize FUCK HIM! You are in pain and shouldn't feel bad about sending a stupid fax. We have a right to call backs, pain meds and being treated like human beings, and don't let anyone treat u differently. Its not our fault we have pain. I don't recommend having a surgery based on why you have TN because it won't help and the thought of cutting the nerve is disgusting and scary. (my oppinion only) I know what its like to be rude to someone when ur in pain, we've all done this and we shouldn't have to apologize. Get another pain doctor and forget this ever happened. Okay? don't let this experience get you down any longer.

9

@

Johanna I am so glad I met you! We feel exactly the same about taking pain meds even if it is prescribed for a legitimate unbearable painful disease. I was raised that "getting high", doing drugs and drinking was wrong so it goes against my upbringing, hence it damages me self esteem. But we need to stand together if you are in as much pain as I am we have no choice. WE HAVE STOP feeling like druggies or drug seekers, WE ARE NOT! We have to change our mindset. I BELIEVE IN YOU! You would not be on this site if you were a druggie. You are an HONEST CHRONIC PAIN PATIENT AND DONT LET ANYONE MAKE YOU FEEL ANY DIFFERENT! (oops caps) oh well you deserve to feel like a legitimate chronic pain patient. You would not let a diabetic go without his insulin? Or deny a Cancer patient chemotherapy. You and I both need to reset our thinking. I think I am coming back around but it has always bothered me also. Stand your ground girl and just know I am here for you.

You are on the right track its good to get a new Neurologist and a good GP that can help with your over all Health

Who will prescribe your pain Meds? You are going to need them for us Atypicals its the only relieve we get, hopefully your new neurologist will help with this. I am happy for you, things are looking up for both of us.

I went to my new GP and she was wonderful she agreed to refer me to another pain clinic and prescribe for me until I get into see them. She also is sending me to Stanford Medical Center BIG medical center in SFO. I am so happy I might get help without having to cut the nerve.I will keep my appointment with the Neurosurgeon to go over my options and go to Stanford for a whole workup to see why I keep getting flare-ups of Shingles that leads to my pain. I have regained my composure and am considering going back to my abusive pain mgmt doc to see what the heck happened. I dunno yet. I will keep you updated.

hang in there Laurie

Johanna Smith said:

Hi all.

On Monday I had an appointment with a new GP. It went well, for the most part. She was very positive, kind and empathetic. She is not very knowledgable about ATN or TN. This is disappointing. She is definitely not a fan of pain meds. This is due to the fact that she doesn't believe that they are effective for nerve pain and that I am taking close to the recommended limit (I take the equivalent of 65 mg of MS Contin, including the percocet, per day). She is willing to read any information I provide her on ATN. She will simply be my healthcare coordinator. Her goal is to help me to be more functional and healthy overall while trying to manage the pain better with my realizing that I will not be pain free.

However, she is giving me a refferal to a new neurologist (I don't have one right now). So, we'll see what happens. I am more than willing to no longer take pain medication as I feel so guilty and bad about taking them. Tired of the stigma of drug seeker no matter how responsible I am and it isn't worth it to me to feel this way. Over the last 2 weeks I have had an increase in pain. I am really nervous that the maintenance meds I am on right now are no longer doing the trick. I am getting some relief from percocet (1-2 5 mg per day depending on pain level). I have around 20% relief from some types of pain so I have always thought that all the flack I get for pain meds is worth it to get a small amount of pain relief.

I am really hoping that the new neurologist will come up with a good plan for me. I'll let all of you know how it goes. I couldn't get an appointment until late June.

Any input on all of this is greatly appreciated. Laurie, I hope this gives you some hope in some way. Thanks for listening and sorry for the long post. Take care. Johanna

10

Thank you so much Janet. You made me feel so much better. Your right he treated me like a Prick! It was like he was some kinda premadonna or something. I may go back and speak with him I dunno yet. I have made some progress if you look at my reply to Johanna you ca read what I am doing and where I am at. My new GP is sending me to Stanford Medical Center a very good medical center in SFO. I am so excited, maybe, just maybe I can get some help. She is also sending me to a new Pain mgmt doc and willing to prescribe my meds until I get into the new pain doc. Thank you so much you made e feel so much better!

Laurie
Janet Elg said:

I'm outraged that a medical "professional" treated u like that!! what a prick. I would get a referral from my family doctor to a new pain management clinic. And in the meantime i would go and see that other pain doctor and see if he doesn't apologize. Don't stick up for urself or apologize just go see him. He might realize he was wrong. Maybe his assistant gave him shit for treating u like that and he is waiting for u to come back to apologize. And if he doesn't apologize FUCK HIM! You are in pain and shouldn't feel bad about sending a stupid fax. We have a right to call backs, pain meds and being treated like human beings, and don't let anyone treat u differently. Its not our fault we have pain. I don't recommend having a surgery based on why you have TN because it won't help and the thought of cutting the nerve is disgusting and scary. (my oppinion only) I know what its like to be rude to someone when ur in pain, we've all done this and we shouldn't have to apologize. Get another pain doctor and forget this ever happened. Okay? don't let this experience get you down any longer.