Stopping Medications

I have it with my medications and the horrible side effects. I have been thinking of stopping cold turkey over the course of a week in a nice hotel. I don’t know who I am any more. The interactions and length of time. I don’t know if my pain is helped or not. On the days I am suffering at an 8 or 9, I wonder if they serve any purpose. If I stopped, I would know if the meds did anything or not. How much more pain can I be in? My doctors want to try ketamine infusion therapy but I won’t know if it really works if I am on so many meds. I know the risks.

I current take 600 mg of Lyrica, 75+ mg of nortriptyline, 200 mg of Zoloft, 60 mg of Vyvanse, 6-8 Percocet, 10-325?, 2-3 mg of Xanax, 10 mg of Ambien,10 mg of maxalt, 5 mg of zyprexa. They also want to start me on31 shots of Botox but the migraines are not the major source of pain. The boring, piecing, gnawing and burning keep one finger on the trigger.

Thoughts?

Thanks

That’s a lot of medication. I know the frustration. I am absolutely sick today. Nauseous and dizzy. I added Neurontin to Tegretol. The breakthrough pain is horrible. So I will stumble a bit until I adjust. Have you tried carbamezapine? Perhaps a pain management doctor with a reevaluation. Best wishes.

Richard, I understand…however, I would get a written weaning plan from your doctor so that y can wean off the meds safely…in my own past experience, I’ve learned that I can’t go lower than 800mg Tegretol ( I’m at 1400mg down from 1600mg), When I was given a new med in March
( Keppra) I asked if I could wean down the Dilantin ,as I did not want to be drugged up and listless, so as I started to add the Keppra and wean down the Dilantin, I learned that Dilantin really helps my classic TN 1 electric shocks…the Keppra after 2 months did nothing…so off of that slowly and increased my Dilantin again…I’ve since added clonazepam.
My TN pain is not managed, but I know from doing the above slow weaning process, how each one does help in sone ways. I still get 10/10 episodes and I have sone level of pain each day.

All this to tell you that it’s imperative that you don’t stop cold turkey, take the time to wean off all the meds with a doctors guidance. If you don’t, you can suffer seizures, stroke, heart issues very serious issues etc etc

Opiates have never touched my TN pain. They’ve only ever made me pass out and wake up with a hangover type headache and general malaise…but they work for some…

Talk to your prescribing doctor and come up with a plan, keep a journal so you can document how you feel throughout the weaning process.
Be safe, and best of luck.
(( hugs )) Mimi

Thanks for the suggestion. I have tried that as well. 21 medication on and off label over two years. Reactions, interactions, rashes or no better than the other. This is what gets me through the part of the day I try and stay awake. I have the best pain doctor in California. He sent me the have a reassessment with another leading doctor. She gave an addition diagnosis of complex regional pain syndrome and suggested ketamine infusion therapy, which my doctor agreed. Insurance does not cover it, it is not FDA approved for pain but everything thinks it might work but cost about $10,000 for the first treatment. I had to leave a $200,00 a year job two years ago and just had my disability claim denied and off to appeal. It just sucks.

Mimi,

Thank you for looking out for me. My tolerance of pain and medications is pretty strong. I agree about weaning down slowly but I have 3-4 doctors that have prescribed all of my medications. I have talked to my psychiatrist about this. I don't know who I am any more and I don't know how much better or worse the pain would be without the medications. Both of my sons, two teenage boys who do not help this single dad at all, are leaving the Country tomorrow for 3 weeks. I feel the need to pounce. I would love to hear from anyone who stopped all their medications, even if weaned down over time and what the outcome was. My doctor always said we would wean me off but nothing works any more. I too have 9/10 every day. I won't allow me to have a 10! The pain is as disabling as it was 2 1/2 years ago, just different. Again, thank you for the love.

Mimi said:

Richard, I understand....however, I would get a written weaning plan from your doctor so that y can wean off the meds safely....in my own past experience, I've learned that I can't go lower than 800mg Tegretol ( I'm at 1400mg down from 1600mg), When I was given a new med in March
( Keppra) I asked if I could wean down the Dilantin ,as I did not want to be drugged up and listless, so as I started to add the Keppra and wean down the Dilantin, I learned that Dilantin really helps my classic TN 1 electric shocks....the Keppra after 2 months did nothing....so off of that slowly and increased my Dilantin again...I've since added clonazepam.
My TN pain is not managed, but I know from doing the above slow weaning process, how each one does help in sone ways. I still get 10/10 episodes and I have sone level of pain each day.

All this to tell you that it's imperative that you don't stop cold turkey, take the time to wean off all the meds with a doctors guidance. If you don't, you can suffer seizures, stroke, heart issues very serious issues etc etc

Opiates have never touched my TN pain. They've only ever made me pass out and wake up with a hangover type headache and general malaise...but they work for some....

Talk to your prescribing doctor and come up with a plan, keep a journal so you can document how you feel throughout the weaning process.
Be safe, and best of luck.
(( hugs )) Mimi

Richard,
I understand the frustration, I went from nortiptiline, to tegretol, added gabapentin, weaned off the gabapentin, added dilantin, hate dilantin. And I have no idea if anything is actually working. My type 1 is under control, my type 2 is horrible. I am thinking about changing meds. I need to know if the drugs are helping and are worth the side effects. I take pain meds and have so much break through pain. It is soooo frustrating and dibilitating. I know It will take me months to safely wean off the tegretol. Is it worth it just to try another drug that may or may not work or that may have the same or worse side effects? One thing though, Mimi is right. My neuro says decrease by 100 mg every two weeks or else you are at severe risk for seizures, stroke etc. I typically wait too long before I take a norco bc I hate the fact that I have to take pain pills. I am actually thinking about a fentynal (I know that I spelled it wrong) patch bc it is time release. Maybe it may stop the breakthrough pain. Just know you are not alone. I always think that one day I will wake up and will be better. That I will have a good day and then a second good day and so on. I read about people having breaks for long periods of time so it is possible. It will happen. Stay strong. Hugs and understanding.

Hi,
I hate all my medications but then again I love them at times(usually when I’m in a little ball of pain; so it’s a love hate type of relationship. Any how I would highly recommend talking with your doctors about ween down on meds. I take Lyrica as well and I can let you know that the withdrawals from that perticular drug are not nice. There are also serious side effects that can happen such as seziours. I understand your desire to ween off just be careful and do this safely.

My doctor took me off of Gabapentin (3600 mg/day) within a week, which was a huge mistake. Sure, it wouldn't kill me to go down this fast, but the side effects almost did. They hit on day three after I halved my intake. Severe nausea and severe itching. I went back up again, and took the whole process a lot slower. Within one month I was off. I was terrified of stopping the med since it had given me a lot of relief in the past. Once I got off of the drug, I realized my body has gotten used to it and it was doing NOTHING.

I switched to Lyrica in January. I don't think it is doing anything, so I am getting off of this drug too. This time, I know that I need to go slowly.

I would go ahead and try the Botox, even if Migraine isn't your biggest problem. I have ATN over my forehead and nose. I have had two Botox treatments so far. I am getting my third one in August. I think it helped a little. Sometimes you realize that helping pain in one area can help all areas. I have found that when my headache gets to a 8-10, I swear my whole head explodes in pain. Try anything and everything you can. I am currently doing the waiting game for my last hope, a peripheral nerve stimulator. God help us all. Love

Hi, I also wonder if the meds are helping me. Did you try the botox? I saw new neurologist today and he wants to try botox injections, but I doubt that I can get coverage. It’s $440 for just one go. That is extremely unrealistic on my budget. I am hoping to find someone who has tried it.