I am 66 y/o male clinical behavioral psychologist. I have diabetic peripheral neuopathy, carcinoid cancer, and ankylosing spondylitis. Been on gabapentin 3600mg daily for several years. Had to increase more and more to get the same effect. Not working now. Put on duloxetine hcl 40mg to aid with the neuropathic pain. Not working now. Put on Fentanyl patch 75mg every 72 hrs for cancer pain in abdomen. Did away with fentanyl on my own by reducing slowly to 12.5mg and then none. Went thru ■■■■. Last week reduced gabapentin to 1600 mg daily. Gone thru ■■■■ ever since. At same time last week stopped duloxetine. Going thru every withdrawal symptom there is listed on the internet. Yesterday started taking 20mg duloxetine to help get thru the withdrawal symptoms. Believe the rheumatologist and the primary care at the VA lied to me about these drugs. Haved talked to my doctor about stopping meds just yet. VA pharmacist never returns my calls. Waiting for them to call today. Already 2pm, and no calls yet. I also started remicade for my ankylosing spondylitis 6 weeks ago. Anyone know first hand about stopping this medication? Next infusion in 10 days. Also started somatuline depot for my cancer on May 1. Not sure if it is helping but I am considering stopping this as well. I take oxycodone for pain at night 10mg. Trying to get rid of that too. I want to find me in there again. I am tired of the drugs. But so many and so many additional problems due to the drugs. HELP if you can.
Hi, I wish there was an answer I cld give you. Unfortunately, cannot. Pls, find other doctors other than VA....they killed a relative of mine. Good luck.
It's understandable that you are frustrated with these multiple pain issues and the side effects that come with such strong medications while not being properly monitored by your health care providers. It's good you are willing to do something to rectify the situation but please take it slow. I don't know about all the meds you are trying to withdraw from but the gabapentin I am very familiar with. It can be fatal due to severe depression if you reduce too much too rapidly. It is also probably very hard on your system to adjust to multiple biological and chemical fluctuations if you are eliminating more than one medication at the same time. So perhaps work on just one at a time and keep detailed records of reactions and progress to share with your doctors eventually. Also give your body time to adjust to the changes before beginning withdrawal of another. This helped me. I was once on 13 different medications which did little to help while causing new conditions, some permanent. It took years to reduce them down to the two that I do daily and the two that I only take maybe once a month. I've found natural safe alternatives for most and have learned to cope with the conditions I can't safely medicate. It's a daily challenge but at least I'm mostly me again. I did this without help from the doctors because they weren't there for me, the whole person, just for the clinical diagnoses that I presented to them. I hope you can begin to find yourself again. One other thought...do you have access to a patient advocate who might be able to handle some of the more stressful aspects of navigating the VA system so you can spend your energy on healing?
All I can say, Doodlebug, is that I am praying for you! God bless!!!
I appreciate your comments and support. Not usually one who reaches out to even family but this ordeal has reinforced the need for socialization. I retired from the Army. After being wounded 3 times in Vietnam in 1968-69 I spent over a year in the hospital. After that I decided to remain and retired. Working for the Fed's just seemed normal for me as I understood the system. And, we liked to travel. Taking our three daughters in tow to Japan, Korea, and Germany. Over the years the gun shots to the belly and lower spine took their toll as I was a runners 12 abdominal surgeries for respecting small bowel and ankylosing spondylitis with neuropathy from agent Orange related diabetes left me in a lot of pain. You can probably see where this is going. . Individual medications ceased to work over the years so the VA doctors kept recommending adding additional drugs but never taken any away. With higher doses and combinations things just seemed not to work anymore. My cervical vertebrae 5-6-7 was fused in May so more drugs. The pain is still there but the drugs keep me from caring about it. I play banjo and have joined a jam session weekly. I finally couldn't remember eight notes I just played or remember what comes next. I am frustrated and want off all these drugs. I started remicade for my back and it works extremely well. Prior to two months ago I was in a wheel chair if I had to go more than a fifty foot stretch. Now I can walk albeight with discomfort but I can walk. Bending has become tolerable and I can do my own yard work. Diagnosed with carcinogenic syndrome after tumors were respected from my duodenum more drugs were added. I was ready to die in 2013 when all my intestines shut down few r poo over six weeks. I was.palliative care and respite care . All food pureed after two months on feeding tube. I can now eat a steak and lobster. Moving back to the Pacific northwest seemed the right thing to do for my wife to be near our oldest daughter. In have no intention to die at this point and I want my life back. So it has made sense to get off these drugs that interfere with my music and make my life worse than the treatment they profess. There are VA advocates but they have not been helpful.
Sorry the VA advocates aren't actually advocating for you. I'm not surprised. Seems to be the standard VA protocol to wear the title of health provider without earning it. I suppose a patient advocate from outside the system would be of little use. It seems you've weathered so much already and now you have to doctor yourself to hold onto what progress you have made. Must feel as if they're just medicating you so they don't have to deal with you. I get that because I have multiple overlapping conditions that make diagnosis and treatment complicated and time consuming. They medicate the symptoms without treating the cause and that just creates new complications while making existing conditions worse. Then their solution is more drugs. We have no choice but to arm ourselves with knowledge and keep questioning every action they take. Do whatever you can to hold onto your music. It has healing benefits as does laughter. The worse my pain the more I joke and laugh and watch alot of comedies. If nothing else it will help you retain your sanity in an insane situation which being a clinical behavioral psychologist you have probably recognized. Now if you could just modify the VA's behavior you might cure them of their mental illness so they can do their job and help you heal.
Wow.....I feel for you ! It seems physicians want to keep prescribing and increasing dosages of all the drugs we take.....no only that they want us to stay on them ! I'm sick of it ! Yes I am on Gabapentin for 4 years now but am tapering off and want to completely elminate . My neurologist Said I had RLS..so he prescribed them " Take 1 to 4 300 mg/ daily a few hours before bedtime" Bunk! I've been having terrible side effects (the literature labels always downplays the severity of adverse reactions--typical huh ? ) He had also prescribed .5 to 1 mg/ of Klonopin.....the related interactions between these 2 over a period of time is diabolical...yes I mean that . I am determined to live without these drugs as best I can...my goal is to be completely free over time...I know the withdrawal is slow and has to be very careful...but will do it. Am already down to .25 klonopin/day and one 300 mg/ Gabapentin per nite....I'm feeling better after 1 to 2 weeks ! I feel more normal now......I'll just put up with the RLS symptoms since apparently there is no "cure" for it......In your case I wish you the best........
What were your siide-effects from the Gab?
OK , my side effects were this....... first, my neurologist diagnosed me with RLS.....I was having (and still am ) burning sensations of my pressure points when I am sitting still, burning ( I guess it is neuopathic pain-- dont know) on my lower buttocks and having trouble sitting still, and on my elbows , even with light resting of my elbows on the couch like watching TV and mostly in the evening....OK well it does not seem to me that this is classic RLS since I dont feel a restlessness but yes upon getting up and moving around it relieves the discomfort...still he says its RLS and so Rx'd me Gabapentin AND Klonopin. Gaba at 300 mg up to 1200 mg in the evening and just before bed, in addition to that he says also take Klonopin .5mg to 1 mg every nite before bed for sleep.......Yes the Gaba does relieve the discomfort and yes the Klonopin relaxes me very much to be able to sleep.......Ok, but also I varied the dosages as didnt want to be on too much on them. (forgot to mention I was also taking 10 mg ambien for sleep before that ! ) For a while I seemed to manage OK. but after couple of years started noticing, agitation, nervousness, anxiety (the very things they are supposed to help ) and also even more distressing......dizziness, balance problems, nausia.....etc...all the things all 3 drugs indicate are prominent side effects. Well I started doing my own evaluation (because the Doc's could not figure out why I'm having these other symptoms....Duhhh !! ) It's the toxic long term effects of these Drugs thats doing it..........So Now I have started a very very slow weaning process from all 3 meds. 1st I have gotten off the ambien......good thing.....I now have very much less dizziniess and better balance........2nd......I cut way down my Gaba. from 300 - 1200 mg per evening to only 300 mgs per evening (2 weeks now ) and the Klonopin down to only .25 mg/ everning for sleep........I'm still taking it slow........BUT I feel much better.......still have slight dizziness not all gone be getting better.....my goal is to get off all completely......Regards
Hi Doodlebug I think we must share the same doctor. I was on the same as you and had the duloxitine for peripheral neurophathy then had it increase as I felt depressed--- big mistake I think I had a seratonin crisis when it was increase and interacted with fentanyl so stopped the duloxitine as I though I might become serously ill. I did discuss it with a doctor at the time as it was too much of a coincidence with doubling the duloxitine dose. The gabapentin I stopped dead too not recommended, and tapered the fentanyl--- 10 actiq a day and a 50mcg patch and suffered withdrawal. I suffer a lot a of pain from chemotherapy and radiotherapy damage, fractures to my spine, small bowel was removed, bleeding from my bladder and bowel and peripheral neurophathy. I would rather suffer the pain now than be a zombie with all the drugs. I spend a lot of time in bed but at least I know what's going on around me now.
I beleive the gabapentine should be a slow taper as the withdrawals are bad.
I found low dose Amytriptilline helps me to sleep at night, loperamide if you get diarrhoea and diazepam short term use for anxiety and just to dull the senses during withdrawal.
Remicade is effective at treating active ankylosing spondylitis, but you have to be careful to avoid infections. You certainly have a lot of health issues.
i hope you manage to get over the withdrawals and find the real you again.
Good Luck and lots of warm hugs xx