been a rollercoaster ride lately

ellenm4
ellenm4 Member Posts: 124
As you all know a month ago I went on the fentanly patch for my pain. It was working great...no pain. Then one night I started acting very weird. I was nasuea, unsteady on my feet, my head felt like it was going to explode. My husband ripped the patch off and put me to bed. I sleep 20 hrs straight. Felt better the next day, so i put another patch on but a lower dose. Within 1 hrs it started all over again. My husband called the Dr. and took me in right away. MY system had built up alot of this drug and i was starting to OD. So I tookthe patch off and went cold turkey. 3 days later I was at the hospital. I thought I was going to die. Ihad no color, running fever chills so bad they could not get me warm, then I would bust into a clammy sweat that would make me look like some poured water over me. Would not eat nor drink. I had lost 10 pounds in less than 5 day. I was so week I could not even walk. After being there all night and have fluids ran through me the doped me up with dalildad and sent me home. I made an appointment with the pain management to get help. He saw me that next morning, thank goodness. He gave me a Med to help me with the withdrawls. And then 2 days later did a few nerve blocks. I feel he needs to do a few more...but today I am past the withdrawls. People please be careful with these patches. The doctors do not tell us everything. I still have some pain, but I am tying to take it a minute at a time and lay down to rest when I start hurting too bad..it seems to help some. Just want to let you all know that we need to do more research on the drugs these doctors gives us.may God bless you all!

Love,
Ellen

Comments

  • lekkerone
    lekkerone Member Posts: 199 Member
    Ellen
    That is a very warning to anyone else whose doctor suggests that patch. I am so glad you are okay now and that your husband got you to the hospital.
    Take care,
    Diane
  • ColoradoDani
    ColoradoDani Member Posts: 65
    So glad you're okay
    Wow, Ellen. You have been through so much and are so strong. I am glad you're coming out of all of this okay, but it still doesn't sound like you're in great shape. Thanks for the info. Take care. Thinking of you.

    Dani
  • ColoradoDani
    ColoradoDani Member Posts: 65
    So glad you're okay
    double post :)
  • ellenm4
    ellenm4 Member Posts: 124

    So glad you're okay
    Wow, Ellen. You have been through so much and are so strong. I am glad you're coming out of all of this okay, but it still doesn't sound like you're in great shape. Thanks for the info. Take care. Thinking of you.

    Dani

    Not out of the woods yet so
    Not out of the woods yet so to speak! Thank you all for you encouraging words. they do help. My faith is getting me by, so I just keep on going just like the everready bunny! LOL
    Love and Blessings!
    Ellen
  • arlekim
    arlekim Member Posts: 47
    Good 2 know
    Ellen, i am so glad to have read ur post! I' m experiencing the same thing as u have n I to have the patch. I tell my mom " mami, I just dont feel good lately" n she said to stop those patches! I am going to call my doc tomorrow. I dont like feeling like this.

    Gracias Ellen
  • ellenm4
    ellenm4 Member Posts: 124
    arlekim said:

    Good 2 know
    Ellen, i am so glad to have read ur post! I' m experiencing the same thing as u have n I to have the patch. I tell my mom " mami, I just dont feel good lately" n she said to stop those patches! I am going to call my doc tomorrow. I dont like feeling like this.

    Gracias Ellen

    Do not stop them cold turkey
    Do not stop them cold turkey like I did...your Dr. Hour stp you don on the dose. You my want to also find a Gog pain management Dr to help you one. Keep strong nd bless you!
    Ellen
  • Sue_J
    Sue_J Member Posts: 15
    arlekim said:

    Good 2 know
    Ellen, i am so glad to have read ur post! I' m experiencing the same thing as u have n I to have the patch. I tell my mom " mami, I just dont feel good lately" n she said to stop those patches! I am going to call my doc tomorrow. I dont like feeling like this.

    Gracias Ellen

    Fentanyl patch-Ellen and arlekim
    Hi everyone,

    I have used a fentanyl patch now for over 4 years for another condition that I have which causes severe pain. In using it, and knowing many who do, it is imperative to begin at a really low dose-there is one made by Duragesic that is 1/2 the dose of fentanyl's starting dose.

    Ellen, it sounds like you absorbed 72 hours of medication at once from the patch (Fentanyl is a 3 day patch). Thank goodness y'all recognized it and sought help. This is quite rare in the general population, but I know almost nothing about this cancer community and what is happening to our bodies. Unless you have the severe symptoms like Ellen had, a better way to go is to contact your doctor immediately and they will use a narcotic equivalency table to move you to another med at a lower amount to stop the symptoms (immediately remove the patch if symptoms are severe), but you truly do not want to go into withdrawal.

    Persons who have severe pain are never addicted to pain medications, but do become dependent....hence the withdrawal.

    As a retired RN and pain management specialist, this is something I have some knowledge about, and hope this information is helpful to someone.

    Sue_j
  • ellenm4
    ellenm4 Member Posts: 124
    Sue_J said:

    Fentanyl patch-Ellen and arlekim
    Hi everyone,

    I have used a fentanyl patch now for over 4 years for another condition that I have which causes severe pain. In using it, and knowing many who do, it is imperative to begin at a really low dose-there is one made by Duragesic that is 1/2 the dose of fentanyl's starting dose.

    Ellen, it sounds like you absorbed 72 hours of medication at once from the patch (Fentanyl is a 3 day patch). Thank goodness y'all recognized it and sought help. This is quite rare in the general population, but I know almost nothing about this cancer community and what is happening to our bodies. Unless you have the severe symptoms like Ellen had, a better way to go is to contact your doctor immediately and they will use a narcotic equivalency table to move you to another med at a lower amount to stop the symptoms (immediately remove the patch if symptoms are severe), but you truly do not want to go into withdrawal.

    Persons who have severe pain are never addicted to pain medications, but do become dependent....hence the withdrawal.

    As a retired RN and pain management specialist, this is something I have some knowledge about, and hope this information is helpful to someone.

    Sue_j

    Thanks for the info Sue, and
    Thanks for the info Sue, and you are right. What happened to me was rare. The withdrawls made me feel like I was going to die! Today I am better thanks to a great pain management doctor. I go back to see him again on Monday. Hope all is well with you and you are in my prayers.
    Ellen
  • Loriwannop
    Loriwannop Member Posts: 5
    Sue_J said:

    Fentanyl patch-Ellen and arlekim
    Hi everyone,

    I have used a fentanyl patch now for over 4 years for another condition that I have which causes severe pain. In using it, and knowing many who do, it is imperative to begin at a really low dose-there is one made by Duragesic that is 1/2 the dose of fentanyl's starting dose.

    Ellen, it sounds like you absorbed 72 hours of medication at once from the patch (Fentanyl is a 3 day patch). Thank goodness y'all recognized it and sought help. This is quite rare in the general population, but I know almost nothing about this cancer community and what is happening to our bodies. Unless you have the severe symptoms like Ellen had, a better way to go is to contact your doctor immediately and they will use a narcotic equivalency table to move you to another med at a lower amount to stop the symptoms (immediately remove the patch if symptoms are severe), but you truly do not want to go into withdrawal.

    Persons who have severe pain are never addicted to pain medications, but do become dependent....hence the withdrawal.

    As a retired RN and pain management specialist, this is something I have some knowledge about, and hope this information is helpful to someone.

    Sue_j

    Withdrawals
    Hi Sue_J,
    I am new to this site and hope Iam not jumping in to a personal conversation ? I was hoping Sue_J you could answer a question about withdrawal from another drug.I know your not Dr. But you have more knowledge then most of us when it comes to the drugs we are given and the side effects that they might cause.My question is on the drug Lyrica.I am attempting to come off Lyrica that was subscribed to be about 4 years ago.
    I am nausea and have no appetite.I am wondering if these are symptoms of weaning off of the Lyrica.I have gone from 150 mil twice daily to 75mil twice a day.This has been over a two or three months time.But the nausea is un believable .I never knew when it was first subscribed how addicting this drug was.It was given to me for neropathy at the time I think it was just a relatively new drug out.My Dr. Would just up the dose when I would say it wasn't working.I then came to the point wear I said to my Dr.instead of upping the dose lets get me off this drug and find something else to work for me.Upping the dose just didn't seem like it was the answer for me.I just never imagined I would be so nausea all the time.Just looking for your opinion,does Lyrica have this kind of withdrawal symptoms ? Thanks for you time and thoughts Sue_J. Lori
  • AlanRinHBG
    AlanRinHBG Member Posts: 121

    Withdrawals
    Hi Sue_J,
    I am new to this site and hope Iam not jumping in to a personal conversation ? I was hoping Sue_J you could answer a question about withdrawal from another drug.I know your not Dr. But you have more knowledge then most of us when it comes to the drugs we are given and the side effects that they might cause.My question is on the drug Lyrica.I am attempting to come off Lyrica that was subscribed to be about 4 years ago.
    I am nausea and have no appetite.I am wondering if these are symptoms of weaning off of the Lyrica.I have gone from 150 mil twice daily to 75mil twice a day.This has been over a two or three months time.But the nausea is un believable .I never knew when it was first subscribed how addicting this drug was.It was given to me for neropathy at the time I think it was just a relatively new drug out.My Dr. Would just up the dose when I would say it wasn't working.I then came to the point wear I said to my Dr.instead of upping the dose lets get me off this drug and find something else to work for me.Upping the dose just didn't seem like it was the answer for me.I just never imagined I would be so nausea all the time.Just looking for your opinion,does Lyrica have this kind of withdrawal symptoms ? Thanks for you time and thoughts Sue_J. Lori

    Lyrica
    Hi Lori,, You can jump into any conversation you want any time you want. At least that's what I do if I can help or get some help. I remember you from another thread about pancoast tumors. Am I right? I've been on Lyrica, Then Gabapenten, then back on Lyrica. I was up to 900 mg Gabapenton a day,, then as much as 600 mg Lyrica. Currently 150mg twice a day. None of this stuff works for me. I don't think it's addictive but weaning off it gradually is currect. So far in 3 years, I have no relief and thinking it's just a forever thing. I've been to several top nuero docs and pt, now another emg, then who knows.?? The nerve damage from the tumor and radiation may just be permanent. Someone out there knows something about this,, please speak up..thanks. Alan
  • barbebarb
    barbebarb Member Posts: 464

    Lyrica
    Hi Lori,, You can jump into any conversation you want any time you want. At least that's what I do if I can help or get some help. I remember you from another thread about pancoast tumors. Am I right? I've been on Lyrica, Then Gabapenten, then back on Lyrica. I was up to 900 mg Gabapenton a day,, then as much as 600 mg Lyrica. Currently 150mg twice a day. None of this stuff works for me. I don't think it's addictive but weaning off it gradually is currect. So far in 3 years, I have no relief and thinking it's just a forever thing. I've been to several top nuero docs and pt, now another emg, then who knows.?? The nerve damage from the tumor and radiation may just be permanent. Someone out there knows something about this,, please speak up..thanks. Alan

    Lidocaine patches 500 mg and Norco
    Seems my med team likes Norco and using lidocaine patches. No addiction problems as of yet.
    ? Lots of water tl drink w/Norfolk of course.
  • Loriwannop
    Loriwannop Member Posts: 5

    Lyrica
    Hi Lori,, You can jump into any conversation you want any time you want. At least that's what I do if I can help or get some help. I remember you from another thread about pancoast tumors. Am I right? I've been on Lyrica, Then Gabapenten, then back on Lyrica. I was up to 900 mg Gabapenton a day,, then as much as 600 mg Lyrica. Currently 150mg twice a day. None of this stuff works for me. I don't think it's addictive but weaning off it gradually is currect. So far in 3 years, I have no relief and thinking it's just a forever thing. I've been to several top nuero docs and pt, now another emg, then who knows.?? The nerve damage from the tumor and radiation may just be permanent. Someone out there knows something about this,, please speak up..thanks. Alan

    Nerve Damage
    Hi Alan,
    Yes that's me pancoast tumor.I decided to not switch over to gabapenten.Im hoping when I'm finally off of Lyrica I can manage without meds.That's my problem is waiting to get off lyrica.I recently had nerves tested to see what was damaged.Wouldnt be doing that test any time soon.Was a little more pain then I like.It did show damage was from past or longer injury.Chemo ( 2006) and that was not as bad as they thought but would probably have to take some kind of meds. To tolerate.Its a wait and see thing.Thats for you help Alan It's not nice but at least I know someone else knows how I feel.Thanks again,Alan is right anyone else who can be of help would be thankful
  • Loriwannop
    Loriwannop Member Posts: 5

    Lyrica
    Hi Lori,, You can jump into any conversation you want any time you want. At least that's what I do if I can help or get some help. I remember you from another thread about pancoast tumors. Am I right? I've been on Lyrica, Then Gabapenten, then back on Lyrica. I was up to 900 mg Gabapenton a day,, then as much as 600 mg Lyrica. Currently 150mg twice a day. None of this stuff works for me. I don't think it's addictive but weaning off it gradually is currect. So far in 3 years, I have no relief and thinking it's just a forever thing. I've been to several top nuero docs and pt, now another emg, then who knows.?? The nerve damage from the tumor and radiation may just be permanent. Someone out there knows something about this,, please speak up..thanks. Alan

    Nerve Damage
    Hi Alan,
    Yes that's me pancoast tumor.I decided to not switch over to gabapenten.Im hoping when I'm finally off of Lyrica I can manage without meds.That's my problem is waiting to get off lyrica.I recently had nerves tested to see what was damaged.Wouldnt be doing that test any time soon.Was a little more pain then I like.It did show damage was from past or longer injury.Chemo ( 2006) and that was not as bad as they thought but would probably have to take some kind of meds. To tolerate.Its a wait and see thing.Thats for you help Alan It's not nice but at least I know someone else knows how I feel.Thanks again,Alan is right anyone else who can be of help would be thankful
  • Sue_J
    Sue_J Member Posts: 15

    Withdrawals
    Hi Sue_J,
    I am new to this site and hope Iam not jumping in to a personal conversation ? I was hoping Sue_J you could answer a question about withdrawal from another drug.I know your not Dr. But you have more knowledge then most of us when it comes to the drugs we are given and the side effects that they might cause.My question is on the drug Lyrica.I am attempting to come off Lyrica that was subscribed to be about 4 years ago.
    I am nausea and have no appetite.I am wondering if these are symptoms of weaning off of the Lyrica.I have gone from 150 mil twice daily to 75mil twice a day.This has been over a two or three months time.But the nausea is un believable .I never knew when it was first subscribed how addicting this drug was.It was given to me for neropathy at the time I think it was just a relatively new drug out.My Dr. Would just up the dose when I would say it wasn't working.I then came to the point wear I said to my Dr.instead of upping the dose lets get me off this drug and find something else to work for me.Upping the dose just didn't seem like it was the answer for me.I just never imagined I would be so nausea all the time.Just looking for your opinion,does Lyrica have this kind of withdrawal symptoms ? Thanks for you time and thoughts Sue_J. Lori

    Lyrica
    Absolutly jump in, we all are in this together and I too am new to this site. Lyrica is a very strong medication with possibly severe side effects. I researched Lyrica again before responding at http://www.drugs.com/pro/lyrica.html and the manufacturer suggests that it can be discontinued over a one week period.

    No where can I find the half life of Lyrica (the half life is how fast the drug disappears from your system.) An example would be drug A has a half life of 6 hours, so half the med would be gone in 6 hours, another half would be gone in another 6 hours leaving 1/4 of the original dose, so it would be all gone after the next 6 hour period.

    I would check with your physician for other causes of your nausea also, and then get off the Lyrica sooner rather than later. Again, this is your doctor's call, not one of someone on a message board; I hope this helps and that you can look up other information on discontinuing the Lyrica more quickly. IF this is the cause of your nausea, then you need to get off of it.

    Years ago I tried it for my Ehlers Danlos syndrome, and went off it in a week but didn't have any nausea....it just didn't work at all for me.

    Best of luck and I hope you feel much better soon.
    Sue_J
  • ellenm4
    ellenm4 Member Posts: 124
    Sue_J said:

    Lyrica
    Absolutly jump in, we all are in this together and I too am new to this site. Lyrica is a very strong medication with possibly severe side effects. I researched Lyrica again before responding at http://www.drugs.com/pro/lyrica.html and the manufacturer suggests that it can be discontinued over a one week period.

    No where can I find the half life of Lyrica (the half life is how fast the drug disappears from your system.) An example would be drug A has a half life of 6 hours, so half the med would be gone in 6 hours, another half would be gone in another 6 hours leaving 1/4 of the original dose, so it would be all gone after the next 6 hour period.

    I would check with your physician for other causes of your nausea also, and then get off the Lyrica sooner rather than later. Again, this is your doctor's call, not one of someone on a message board; I hope this helps and that you can look up other information on discontinuing the Lyrica more quickly. IF this is the cause of your nausea, then you need to get off of it.

    Years ago I tried it for my Ehlers Danlos syndrome, and went off it in a week but didn't have any nausea....it just didn't work at all for me.

    Best of luck and I hope you feel much better soon.
    Sue_J

    Anyone is always welcome to
    Anyone is always welcome to jump in. I started going to a pain management doctor to help me. I have had 3 nerve blocks, but he put me on Lyrica which now I am having severe leg vramps and they can not tell me why I am having them. I know to get off them you must slowly reduce the amount within a week or 2. When my husband went of it took him 2 weeks to reduce to nothing. But I do not think he was sick feeling. They tried me on the Lidocaine 700mg patch to see if it would help with the rest of my pain....NOPE! Did not work. So I guess I will try to live with the pain, since they do not want me on any more pain pills! I bet it would be different if they felt this pain! LOL

    Take care and hope you do well!
    Blessings!
  • Sue_J
    Sue_J Member Posts: 15
    ellenm4 said:

    Anyone is always welcome to
    Anyone is always welcome to jump in. I started going to a pain management doctor to help me. I have had 3 nerve blocks, but he put me on Lyrica which now I am having severe leg vramps and they can not tell me why I am having them. I know to get off them you must slowly reduce the amount within a week or 2. When my husband went of it took him 2 weeks to reduce to nothing. But I do not think he was sick feeling. They tried me on the Lidocaine 700mg patch to see if it would help with the rest of my pain....NOPE! Did not work. So I guess I will try to live with the pain, since they do not want me on any more pain pills! I bet it would be different if they felt this pain! LOL

    Take care and hope you do well!
    Blessings!

    lidocaine patch versus narcotic pain patch
    Hi Ellenm4

    A Lidocaine patch is simply a topical anesthetic, not a time release pain patch. With my other disease, I use both the lido patch and a narcotic pain patch for pain....the two are entirely different and work in very different ways.

    I hope your pain management doc considers a pain patch like duragesic or fentanyl. You change them every 72 hours (3 days) and they work really well for many. If this physician will not work with you to control your pain, then you need to find another doctor!

    Even with all the concerns docs have with the FDA about overprescribing, the simple fact is truly they want you to not be in pain. Fear sometimes makes them forget just why they went into a healing profession.....we must remind them firmly.

    Best of luck,
    Sue_J