Break Down

1

Nobody replied to my earlier discussion. Too long and complicated, I guess. I understand. I'm new, so I told my entire roller coaster of a tale. I don't blame you guys. Who can follow all of that and get to the meat of the matter?

My question is, in your opinion, if a PM doc prescribes another pain killer to you without addressing the cessation of another pain killer you are currently prescribed by an APN at the same practice that he can see on your file and on the computer right in front of him while he is assessing your meds and condition , would you assume that he intends for you to continue with both, or take it upon yourself to cease to take your previously prescribed pain pill?

Both contain acetaminophen, however, the two scripts combined not only improve your quality of life dramatically, but are not over your limit of APAP.

Thanks in advance for your opinions.

God bless and hang in there all,

Stef

2

Hello Stef, Welcome to the site, I did not read your first discussion, and I don't really have the answer to this one. I live in Stoke-onTrent England, don't know how it works in other countries, but here we can always phone the doctor back and ask, or ask at the chemist when the medication is being prepared. The drugs also have different names, that does confuse me as I am on Gabapentin, but I bet that means nothing to you. Sorry I am not much help, but I do feel for anyone with this pain Love Margaret

3

Hello Margaret,

It is good to hear from you. I have had actually had the privilege twice in my life, once at 13 and once at the age of 29 of visiting your beautiful nation, with it's beautiful architecture and rolling green hills. That was before I was stricken with this beast of an illness at the age of 32. I am now 38. I was misdiagnosed with TMJ for 1/2 a decade and given Diazepam to calm me down, when I told all of the doctors that I was relieved in the morning. I was not clenching. That tells me how rare this disorder is. It is why I am ecstatic to have found this place to commune with those suffering from the same illness.

I am on Gabapentin as well as Tegretol and Cymbalta and Diazepam. Due to years of misdiagnosis, my case is advanced. But, I finally have an MRI scheduled. I look at all of my pill bottles and think, YUK!!! The two meds in question are Oxycodone 10/325 4 daily and Norco (Hydrocodone) 10/235 5 daily. I am afraid to phone the doctor, because even though that is a lot of opiate, it has given me my life back. I am not addicted, I do not get high off of either, but I am dependent because of all of the medications that I take religiously, the combination of Hydrocodone and Oxycodone for breakthrough pain is the first time since 2003 that I have felt almost normal, a bit tired, but willing to do things like decorate shop for, put up, light and decorate the beautiful, white Christmas tree beside me right now with my 7 yr. old. I don't know that I would have been able to do that a month ago.

Even though, it may be a mistake on my Pain Management doctor's fault, it has given me back a degree of wellness that I had given up on.

Yes, you were help by caring and replying. I did ask the pharmacist why the doctor would do that. He replied that he did not know, but sometimes it happens.

I just wonder if, when I see my regular nurse practitioner at the pain clinic on Tuesday, if I should tell her how much improvement it has made, or tell her it may have been a mistake on his part so that I don't appear to be a "drug seeker", because I am not. I just want to feel alive again.

Thank you so much for replying. I hope you find your miracle somewhere along the path with this pain. Another online friend of mine said that she was now symptom free of Type I TN on a combo of only Morphine and Lyrica. So, I suppose miracles do happen!

Take care,

Stef

4

Hi Stef, I am nearly 64, and I have had this since 1999, think if I had had a MVD earlier into my condition things might have been so different. You must find it hard going as when I have my grandchildren I always hope that the pain does not come. Keep taking the pills if they help you, you need pain relief to cope with every day life. You owe it to your daughter to take medication that is helping you. Love Margaret

Stef said:

Hello Margaret,

It is good to hear from you. I have had actually had the privilege twice in my life, once at 13 and once at the age of 29 of visiting your beautiful nation, with it's beautiful architecture and rolling green hills. That was before I was stricken with this beast of an illness at the age of 32. I am now 38. I was misdiagnosed with TMJ for 1/2 a decade and given Diazepam to calm me down, when I told all of the doctors that I was relieved in the morning. I was not clenching. That tells me how rare this disorder is. It is why I am ecstatic to have found this place to commune with those suffering from the same illness.

I am on Gabapentin as well as Tegretol and Cymbalta and Diazepam. Due to years of misdiagnosis, my case is advanced. But, I finally have an MRI scheduled. I look at all of my pill bottles and think, YUK!!! The two meds in question are Oxycodone 10/325 4 daily and Norco (Hydrocodone) 10/235 5 daily. I am afraid to phone the doctor, because even though that is a lot of opiate, it has given me my life back. I am not addicted, I do not get high off of either, but I am dependent because of all of the medications that I take religiously, the combination of Hydrocodone and Oxycodone for breakthrough pain is the first time since 2003 that I have felt almost normal, a bit tired, but willing to do things like decorate shop for, put up, light and decorate the beautiful, white Christmas tree beside me right now with my 7 yr. old. I don't know that I would have been able to do that a month ago.

Even though, it may be a mistake on my Pain Management doctor's fault, it has given me back a degree of wellness that I had given up on.

Yes, you were help by caring and replying. I did ask the pharmacist why the doctor would do that. He replied that he did not know, but sometimes it happens.

I just wonder if, when I see my regular nurse practitioner at the pain clinic on Tuesday, if I should tell her how much improvement it has made, or tell her it may have been a mistake on his part so that I don't appear to be a "drug seeker", because I am not. I just want to feel alive again.

Thank you so much for replying. I hope you find your miracle somewhere along the path with this pain. Another online friend of mine said that she was now symptom free of Type I TN on a combo of only Morphine and Lyrica. So, I suppose miracles do happen!

Take care,

Stef

5

Hi Stef,
I don't know. Call your doctor if you have any questions about the medication. You mentioned pain pills but have you tried any anti-seizure drugs?
Liz

6

Hello Im June

had 2nd mvd for atypical on oct 15 still wondering if Im any better..Im on Neurotin Zolft Nycynta ativan and percocet..I have to see a pain management doc for the nucynta and the percocet..my reg doctor will not prescribe painkillers to me ..she has always been there for me in other ways so I except the situation..

So much frustration along with soooooo much pain!!take care..did that help?

7

Yes, Liz,

I also am on a regimen of Neurontin 1800 mg. daily, Cymbalta 90 mg. daily (to kick in the Neurontin/Gabapentin), and Tegretol. I wish I could say that any of them had ever done much but take a little bit of the edge off. I know they must because once, I accidentally let myself run out of the Neurontin and my face surely knew it. Instead of a constant dull burning, I had an aching stabbing 3 alarm fire going on around my lower two branches.

Liz K. said:

Hi Stef,
I don't know. Call your doctor if you have any questions about the medication. You mentioned pain pills but have you tried any anti-seizure drugs?
Liz

8

Yes, June!

It absolutely did. I had to look up Nycynta online, as I hadn't heard of this medication. This is proof positive, though, that, at times, pain management doctors will prescribe pain killers to work synergistically.

So, it is plausible that my pain management doctor did not make a mistake. Oh, I hope not! I was having horrid breakthrough pain even with the meds I was taking before my "emergency" appointment. . . .and you're right, this is a most frustrating plight for anyone. Here's hoping that your meds are bringing you relief!


June Scott said:

Hello Im June

had 2nd mvd for atypical on oct 15 still wondering if Im any better..Im on Neurotin Zolft Nycynta ativan and percocet..I have to see a pain management doc for the nucynta and the percocet..my reg doctor will not prescribe painkillers to me ..she has always been there for me in other ways so I except the situation..

So much frustration along with soooooo much pain!!take care..did that help?

9

Hi Stef,

I read your other one late last night, and intended to answer in the morning, so I left you a short comment on your comment wall, sorry that I couldn't respond then, but pain is almost always present at nights for me. Sometimes it takes a while to get responses - we are all hurting at one time or another :o).

Here is how I would phrase the question to your nurse practitioner: "You have me on two pain medications right now, oxycodone and hydrocodone, and the combo is working very well to control my pain - if I take them as prescribed, should I be concerned about the APAP levels when I need to take them together?" Nothing more or less. Allow them to respond however they want. It is not your responsibility to point out whether the doctor made mistake or not. It is you who needs to be your own best advocate, and the doctor's responsibility to catch their own (possibly or possibly not) mistakes.

That is how I would put it, but go with your intuition on this one. I understand what a balancing act that it can be sometimes.

Best of luck,

Lily

10

Hello again, Lily!

EXACTLY! That is almost exactly to the tee what I had decided to say when addressing the issue tomorrow! Except for the fact that your phrasing is BETTER . . . .very tactful! Many thanks to you! I remember your comment of last night and thank you. Yes, we are all in pain at one time or another. I am thankful that you cared so much to leave me a note on my page when you were in pain. So far, only one flair up today for me. That is a blessing because the kids are home due to a snow day. But, lucky for me, unlike many, the air has to be very cold and gustful to bring on an attack. Eating, talking or stress is usually what brings it on strong for me. Well, that or forgetting my medication.

Many thanks to you for the perfect way to handle this subject. The butterflies in my stomach have somewhat abated.

Lily said:

Hi Stef,

I read your other one late last night, and intended to answer in the morning, so I left you a short comment on your comment wall, sorry that I couldn't respond then, but pain is almost always present at nights for me. Sometimes it takes a while to get responses - we are all hurting at one time or another :o).

Here is how I would phrase the question to your nurse practitioner: "You have me on two pain medications right now, oxycodone and hydrocodone, and the combo is working very well to control my pain - if I take them as prescribed, should I be concerned about the APAP levels when I need to take them together?" Nothing more or less. Allow them to respond however they want. It is not your responsibility to point out whether the doctor made mistake or not. It is you who needs to be your own best advocate, and the doctor's responsibility to catch their own (possibly or possibly not) mistakes.

That is how I would put it, but go with your intuition on this one. I understand what a balancing act that it can be sometimes.

Best of luck,

Lily

11

I am sorry Stef. You are a very wanted and valued member of t his community. I have been super busy, but wanted to take a moment to respond to your post. Your doctor needs to ask t he questions, but it falls on you as well to bring things up. I have found doctors get busy and they often over look things.

12

To Lily: beautifully precise phrasing. I have talked with hundreds of pain patients over the past 15 years about many treatment issues. Yours is one of the better phrasings that I've seen in handling what may have been an error of inattention by an otherwise well-meaning physician. Though I'm not affiliated with the site management here, I just wanted to acknowledge your contribution and thank you for being here.

Regards and best,

Red Lawhern, Ph.D.

former webmaster, Trigeminal Neuralgia Association


Lily said:

Hi Stef,

I read your other one late last night, and intended to answer in the morning, so I left you a short comment on your comment wall, sorry that I couldn't respond then, but pain is almost always present at nights for me. Sometimes it takes a while to get responses - we are all hurting at one time or another :o).

Here is how I would phrase the question to your nurse practitioner: "You have me on two pain medications right now, oxycodone and hydrocodone, and the combo is working very well to control my pain - if I take them as prescribed, should I be concerned about the APAP levels when I need to take them together?" Nothing more or less. Allow them to respond however they want. It is not your responsibility to point out whether the doctor made mistake or not. It is you who needs to be your own best advocate, and the doctor's responsibility to catch their own (possibly or possibly not) mistakes.

That is how I would put it, but go with your intuition on this one. I understand what a balancing act that it can be sometimes.

Best of luck,

Lily

13

Red,

I concur with what you said. In fact, I was telling my friends and family today that a lady online had eloquently verbalized exactly what I had wanted to say to my PM Nurse Practitioner.


Richard A. "Red" Lawhern said:

To Lily: beautifully precise phrasing. I have talked with hundreds of pain patients over the past 15 years about many treatment issues. Yours is one of the better phrasings that I've seen in handling what may have been an error of inattention by an otherwise well-meaning physician. Though I'm not affiliated with the site management here, I just wanted to acknowledge your contribution and thank you for being here.

Regards and best,

Red Lawhern, Ph.D.

former webmaster, Trigeminal Neuralgia Association


Lily said:

Hi Stef,

I read your other one late last night, and intended to answer in the morning, so I left you a short comment on your comment wall, sorry that I couldn't respond then, but pain is almost always present at nights for me. Sometimes it takes a while to get responses - we are all hurting at one time or another :o).

Here is how I would phrase the question to your nurse practitioner: "You have me on two pain medications right now, oxycodone and hydrocodone, and the combo is working very well to control my pain - if I take them as prescribed, should I be concerned about the APAP levels when I need to take them together?" Nothing more or less. Allow them to respond however they want. It is not your responsibility to point out whether the doctor made mistake or not. It is you who needs to be your own best advocate, and the doctor's responsibility to catch their own (possibly or possibly not) mistakes.

That is how I would put it, but go with your intuition on this one. I understand what a balancing act that it can be sometimes.

Best of luck,

Lily

14

HI HOW ARE YO THIS EVE ,

WILL AM SORRY I CANT HELP YOU,BUT

YOU CAN ALWAYS CALL YOUR DOC AND ASK

AM SO SORRY I COLDN'T HELP AM SORRY YOU HAVE TN

AM TAKING EPITOL 200MG AND GABAPENTIN 300MG

BUT AM THINKING ABOUT GETTING OFF PILLS AND TAKE

FISH OIL AT NIGHT AND IT SUPPOSED TO GO AWAY I FEW MORE PILLS TO TAKE

I GOT TO SEE WHERE I SEEN THAT ANYWAY I PRAY FOR YOU TOO,

I REALLY DONT UNDERSTAND WHY WE SUFFER I HATED THE ATTACK

I GET SO SCARED WHEN IT COME ATTACK LIKE ELE SHOCK STABBING

I JUST WANT TO CRY WHEN AM THINKING ABOUT IT !! BELIEVE ME I LOVE TO DRINK BEER,

I DIDNT WONT TO STOP LIKE THIS LOL!! OH WELL IT HAPPEN ON THE WRONG TIME

TOO!! WELL MY DOC SAID I CANT DRINK ON THIS PILL ANYWAY GOD BLESS YA !!

SALLY CHOATE

15

Hello, Sally.

I am having an fairly good evening. It has been a better than normal day, I suppose, presenting me with one mild flair up this morning, and one severe one this evening. It sounds as if you have classic, or Type I TN, with the electric eel like shocking. I am so sorry for your suffering. My heart bleeds for anyone with this condition. I am not sure which would be worse. I am Type II or ATN and suffer with daily burning, crushing, and at times, trigger point pain in all three branches of my TN nerve, and my neck (but, I think that the neck pain may be due to bulging and arthritic discs, perhaps not ATN)

Yes, my situation is in the hands of God tomorrow. I hope he ministers to the heart of my pain management nurse practitioner tomorrow at my follow-up appointment to either maintain the regimen which has given me partial relief, or to re-vamp my pain medication to a level which is therapeutic for me, and not to take away one of my helpful meds before the holidays. My children need me to be active, not couch bound with severe pain.

The occasional drink was no tough give-up for me. However, we all have our cravings and "creature comforts". I suppose Pizza was a tougher give up for me. If I eat anything which I have to chew that much, it is certain to bring on a torturous flair up of pain which renders me useless. Working was a much graver give up, as I was a work-a-holic who loved my challenging career.

I would be interested to know what type of success you have with taking the fish oil. It sounds like a very low dose of Gabapentin, if you only take 300 mg. daily.

Misdiagnosed with TMJ for 6 years, I have battled this beast using many techniques including chiropractic care, psychotherapy, physical therapy, vitamin therapy, muscle relaxers and a host of medications.

I have never heard of Epitol. I will have to Google that one!

I wonder if you have ever considered or undergone MVD, I hear it the gold standard in treatment of Type I TN.

God bless and best of luck to you! Thank you for your reply!

Stef

sally choate said:

HI HOW ARE YO THIS EVE ,

WILL AM SORRY I CANT HELP YOU,BUT

YOU CAN ALWAYS CALL YOUR DOC AND ASK

AM SO SORRY I COLDN'T HELP AM SORRY YOU HAVE TN

AM TAKING EPITOL 200MG AND GABAPENTIN 300MG

BUT AM THINKING ABOUT GETTING OFF PILLS AND TAKE

FISH OIL AT NIGHT AND IT SUPPOSED TO GO AWAY I FEW MORE PILLS TO TAKE

I GOT TO SEE WHERE I SEEN THAT ANYWAY I PRAY FOR YOU TOO,

I REALLY DONT UNDERSTAND WHY WE SUFFER I HATED THE ATTACK

I GET SO SCARED WHEN IT COME ATTACK LIKE ELE SHOCK STABBING

I JUST WANT TO CRY WHEN AM THINKING ABOUT IT !! BELIEVE ME I LOVE TO DRINK BEER,

I DIDNT WONT TO STOP LIKE THIS LOL!! OH WELL IT HAPPEN ON THE WRONG TIME

TOO!! WELL MY DOC SAID I CANT DRINK ON THIS PILL ANYWAY GOD BLESS YA !!

SALLY CHOATE

16

Hello all,

I just wanted to thank you for all of your concerned and supportive comments. It's hard to know the answer a question when it is, partly, regarding a particular physician. They are all different in their views upon treatment of chronic pain.

Lily, thanks again, for assessing my situation and providing the precise phrasing I used to sum things up concisely to my Nurse Practitioner. I am happy with the outcome of my visit. I was prescribed a longer-acting pain medication with no APAP. My liver is surely breathing a sign of relief!!! I am also thinking that the pain control is superior!

I'm so glad my appointment is over and it appears I may have a bit of relief while it is determined if I am operable. An MRI of my brain is scheduled for Friday. The forecasters call for a "winter storm"! But, I don't think hail and ice could not keep me from it, although I live over an hour away. It would be such a relief, for better or worse, to finally identify the cause.

A sincere thanks for all your input,

Stef

17

Hi Stef,

I am over the moon happy that you have gotten the outcome you desired from your follow up appointment with the nurse practitioner. We don't have those here. Nurse Practitioners that is.

I too am extremely sorry, I also had full intent to reply to your first post - when I read it I was heavily medicated and in intense pain, so like Lily had intended to write back the next day, however when I next logged on, you'd written this post instead, and my pain continued in the worst possible of ways.

I only wish that I too were able to get such decent pain medication here - they are far too restrictive here on pain meds, and I wouldn't care if they came daily to check up on the meds I have to ensure I'm not reselling them or some such - if they only understood or appreciated how much we need them at times.

The Toradol (anti-inflammatory) I get at the hospital, I had to fight to get the 2nd injection as the doctor was worried about my stomach having internal bleeding if I had too much of it, lol. I told him what choice did I have.

I have been dxd with TN1, however these attacks involve pain that lasts days continuously without pause plus the TN1 pains overlayed and it's too much sometimes, as any touch to any part of my head is a trigger so I cannot lie down, only sit or stand and without sleep and too much pain - no food etc., I am rather fallible..

I look forward to hearing your MRI results Stef and wish you all the best in your efforts for pain relief!

Chat soon!

Kerry xx

18

Dear Kerry,

My heart goes out to each and every one of you who are unable to find the medications you need for your pain. My prayers will be with you. You touched on my the nerve that is why I am so infuriated with the healthcare industry , the DEA and recreational drug users and abusers who all play their parts in making it difficult for many of us to get treated appropriately and adequately TRUE, REAL CHRONIC PAIN!

Are there no Pain Management Clinics where you live?



Kerry said:

Hi Stef,

I am over the moon happy that you have gotten the outcome you desired from your follow up appointment with the nurse practitioner. We don't have those here. Nurse Practitioners that is.

I too am extremely sorry, I also had full intent to reply to your first post - when I read it I was heavily medicated and in intense pain, so like Lily had intended to write back the next day, however when I next logged on, you'd written this post instead, and my pain continued in the worst possible of ways.

I only wish that I too were able to get such decent pain medication here - they are far too restrictive here on pain meds, and I wouldn't care if they came daily to check up on the meds I have to ensure I'm not reselling them or some such - if they only understood or appreciated how much we need them at times.

The Toradol (anti-inflammatory) I get at the hospital, I had to fight to get the 2nd injection as the doctor was worried about my stomach having internal bleeding if I had too much of it, lol. I told him what choice did I have.

I have been dxd with TN1, however these attacks involve pain that lasts days continuously without pause plus the TN1 pains overlayed and it's too much sometimes, as any touch to any part of my head is a trigger so I cannot lie down, only sit or stand and without sleep and too much pain - no food etc., I am rather fallible..

I look forward to hearing your MRI results Stef and wish you all the best in your efforts for pain relief!

Chat soon!

Kerry xx

19

Hi Stef,

Thank you for all your kind and heartfelt thoughts about us here. I actually am a pain management clinic patient, but my pain doctor is also an anesthesiologist who prefers to do nerve blocks and such rather than dispense or help with pain control on a daily basis.. I'm awaiting a call back from their office now, as on Nov 5th I was promised by the specialist he'd get me in to do a repeat on the pulsed radiofrequency procedure he'd done earlier this year. I had actually gained pain relief from that - but instead of getting me in within 2 weeks as promised - it's now 6 weeks since I've seen him and almost Christmas.

My hope is just to be able to enjoy my Christmas day with my family! That is the most important thing to me, as we don't get together as a family that often, so like for many others - it's such a special day for that reason. But that's impossible now. He only does these day procedures on Mondays, and today is Saturday here now, so I know that I will just have to take pot luck that I will be well enough on Christmas day. So far each and every day for the past few weeks has been filled with pain. Today is no different, however instead of the long drawn out pain today, it's just the brief moments of pain stabbing or shocking me at will, over a minor drawn out pawn I can feel haunting me below the surface.

I sound so down, I am sorry I don't mean to sound so sad. My GP (regular) Doctor is having me increase my anti-convulsant meds in the mean time, he's sympathetic, but cannot do more than let the specialist know my needs are more urgent now.

Did you fall asleep in the MRI machine? I've done that too! I have to take off my glasses, so I can't see through the reflective mirrors anyway, the sound of the machine drowns out the music they play for me and weirdly, I just doze off! How long till you will get your results Stef?

Best wishes,

Kerry xx