Gab and PHN-Throw something? Cry? Give up? Now what?
Posted , 9 users are following.
Hi all, many of you know me here, diagnosed October 2016, PHN since then.
Since then I use Aspercreme pain cream with Lidocaine, Extra Strength Tylenol 3 times a day (both of those were 4 times at day at my worst), I was at 2700 MG of Gab, now at 1200, and a prescription anti-inflammatory I'd been on for years. I've been tapering off my Gab for a year, only 100 MG/month as I get really crummy side effects and I now feel trapped. As I got to 1200 some of the pain is worse, as I'm no longer numb from the Gab, I'm also having more anxiety and depression. I've written about this before, but now it's really getting to me and I'm tired of no answers, I'm scared and feel lost. I don't know if I should keep dropping and risk more misery or stay the course. The emotional/brain side effects are almost worse than the increase in pain.
I finally reached out to an addiction center for answers as so few people seem to understand Gab. Several transfers later, they said they couldn't help, no answers or suggestions. I Googled it, no new info, so I resorted to calling my doctor asking what I should do. I'm afraid to taper any faster as 3 pharmacists recommended again that as I seem to be very sensitive but the thought of becoming physically dependent (which I probably am) is terrifying.
My doctor had been very supportive, so I thought after talking to the nurse I'd get some suggestions or insights. This is what I got: I can't be getting side effects from tapering, I'm doing it too slowly and at too low a dose. See a neurologist.
So, add me to the growing list of those let down by healthcare. I KNOW what happens when I decrease these meds. I've talked to drug counselors who know this is real (i also called a relative who does that) and pharmacists. I've read stories here about how terrible this drug can be and how debilitating this condition itself can be. I also believe a neurologist can't do anything to help me. The nurse didn't want to hear that, but we all know it's true.
I guess it's time for a good cry, thanks guys.
0 likes, 36 replies
babs99203
Posted
Well, here's a good news update. I am doing MUCH better, I have no idea why. But it is a reminder that there are good and bad days and stretches. I've dropped to 1100 mgs a few days ago, and seem to be OK. I had a VERY, VERY bad day emotionally 4 days ago. A friend happened to call at that point and instead of letting me go, when she heard me crying, we continued to talk. I will see a therapist, one she recommended. I'm paying out of pocket, almost $200 for a 90 minute appointment as my in-network place can't get me in until next month!!
So, why am I better? Because someone cared and gave me a chance to talk? Because I know I can talk to a pro? Because it's a month ending in "y"?? Who knows. That's why I didn't got on meds before or seek out a therapist, as this damn depression is so up and down. SO for now, I'll continued to believe the worst is over. If I'm wrong, I'll deal with it then.
bonnie94603 babs99203
Posted
Hello. Just read your post. May I ask, are you on amitriptyline or nortriptyline? If not, why? They are superior meds for PHN. Have you tried switching from the neurontin to Lyrica? I had to switch early on. The neurontin made me hoarse and changed my voice. Unfortunately that didn't change with the Lyrica, but the medicine helps me so much. Why are you trying to wean off gabapentin if you still have PHN, pain and get depressed when you drop your dose??
I found a fantastic neurologist where I live. I look docs up online and then study their CV to see where they did their training. I get it from their website or the Board of Medicine website in Florida. That's how I found my neurologist. She is Cleveland Clinic trained and works for them still here in FLA. She is the one who started me on the nortriptyline and has me taking the nerve healing supplement everyday called Alpha Lipoic Acid. You have to be patient with these meds. It can take 2 or 3 weeks for the nortriptyline to really work and takes at least 2 months for the ALA to start working. It's a commitment. Good caveat with the nortriptyline or amitriptyline is that they are antidepressants. They help you sleep, too. They are a mainstay med in the long term management of PHN. So I really encourage you to find a good neurologist and be open to the recommendations. A new trend in management are medications like Cymbalta or Effexor. Both are antidepressants and cymbalta is promoted for pain relief, specifically, as well. I hated Cymbalta way back when it was prescribed to me 10 years ago for something else entirely. But I am on Effexor now. I struggled with depression before PHN and this condition alone puts anyone in a depression. But the Effexor raises the serotonin and norepinephrine which both help lessen pain.
It shocks me when I read through the posts how little talk there is about the meds that have become the protocol for management of PHN and how people haven't immersed themselves in educating themselves about the meds and supplements that have been studied and proven to help manage PHN pain. If you're interested I can send you a list of stuff or send you some links to explore. I spend almost every day reading about all aspects of PHN. Things have even changed since my diagnosis in May 2016! I have the typical, most common shingle site......thoracic.....breast bone around side to spine. I'd be up all night telling you my story, my attempts to stop the pain, both medically and holistically. And trips to Mayo and Cleveland Clinic to make sure I wasn't missing something I could do or try for my PHN. Where did you get the shingles? Are you going to get the new vaccine? Do you have a pain specialist managing you? I don't mess around with my internist. They can only offer so much. They just can't have the education that the specialists have. I think they are uncomfortable managing this condition personally. So I use specialists who have actually trained and studied PHN. I see a pain doc, the neurologist, a psychiatrist and was seeing a cardiologist for EKGs every 4 months to make the pain doc happy. A pain med I was on can cause EKG changes, so to keep him happy I would get EKGs. I have HTN anyhow so it was a good thing, too. But I'm not on that med anymore.
So that's what I have to offer you. It's a crappy thing to get dumped on someone, but better than cancer. I'm thankful I have these specialists at my fingertips. I use their knowledge, training and support. So think about it. Take care.🌸🏵🌹🌸🏵🌹
babs99203 bonnie94603
Posted
Hi Bonnie here are the short answers: I couldn't switch to Lyrica without getting off Gab-which would be impossible back then. I discussed this with my doctor and several pharmacists. As I was at 2700 mgs a year ago (I have it in my back and chest) that was a non-starter. Also, it's mixed results, on an individual basis as to which will work better. Same with why I'm not on a different drug. Also, I seem very sensitive to meds and I feel better the devil I know.
The reason I'm trying to get off the meds is because it causes cognitive problems and physical problems, not to mention it can make you drug-dependent. I have been working with my doctor who's more knowledgeable than most. I'm VERY leery of most pain specialists. I worked in healthcare for 30 years and a lot of people have been harmed more than helped by them. The reality is also that there's not much more than the protocol I follow to deal with PHN. Even if I wanted a different doc, I'd have to drive 60 miles to find either a qualified neurologist or pain specialist.
The other reason I want off the meds is that I AM getting better. Not everyone with PHN sees an improvement, but I'm slowly having less pain. It takes a while and there are ups and downs, but I've been doing very well for the last 6 days. I need to remember this when I hit a rough patch again, which will happen. I'm generally at a 1.5-3 on a pain scale. A few months ago it was 2.5-4 and of course before that, it was much worse. I've also learned to avoid certain movements which exacerbate the pain such as lifting, reaching, hugging, bending and twisting. I try and keep a normal life, but will ask my husband to assist me. I'll carry a gallon of milk (8 pounds) as little as I can. I'll be careful as I'm doing the wash. I don't carry a laundry basket, I instead put it all in one arm. I did quit work this past summer, between the meds and the pain, it wasn't worth it.
So, thank heavens I'm on a good path, for now and I'll remember this in the future. I also use Charlie's CBT suggestions to remember to try and re-frame the bad times as being for just now, and to be good to myself. Honestly, it was hard this past week, but when those 8 days were over, I've had a really good week. Now I'm hoping for several good weeks in a row.
Thanks for your concerns and suggestions. I hope you continue to find answers and will also see a decrease in your symptoms and pain.