Gabapentin Fluid Retention and Inaccurate Medical Records

Treatment and medication
1

Hello, everyone!

I wanted to bring up a topic that has been haunting my medical records for years. My physician put me on gabapentin in the mid-1990’s and I took it continuously until July 2016.

Over the years I had what is medically called +4 edema. My legs and feet were very swollen, but after questioning my physician several times, he stated repeatedly, “You are just fat”. Since I am an RN, I knew he was incorrect and I was probably right on target.

At one point my gabapentin was reduced from 3600 mg total each day to 1800 mg. I immediately dropped 10 pounds, but as a “fat” patient I thought it was a fluke. In July 2016 I decided I had enough and insisted my physician give me a weaning schedule. His instructions were to discontinue all gabapentin after a six day wean.

On day six I took my last dose early in the day. I apologize for TMI, but within hours I was up to the bathroom to urinate every 30 minutes. I lost 30 pounds of fluid in 30 days. I did not change diet or activity level.

I recently noticed on all of my medical documentation, that I am listed as having a long history of “obesity”. Obesity is considered when you are 20% more than your ideal weight. I am a 64 year old female, not of Asian decent (genetically smaller frame is considered when calculating BMI), weigh 112 pounds at 5’1". My BMI is actually 21, which makes me normal weight.

My reason for bringing this up, is once you are labeled in your medical records, it seems impossible to get anyone to correct THEIR mistake and I am now having problems due to this error. I will not bore you with the details.

I wanted to give everyone a heads up, and suggest you watch all of your medical documentation closely for inaccurate information pointed at you, (as the patient), concerning side-effects of this drug. I strongly believe physicians do not want to correct their medical records because they look inadequate ignoring serious side-effects.

I am pretty angry about this, because medical/nursing staff have a professional obligation to document accurately, but all they want to do is cover their own backsides.

2

Thanks for the info,
Fluid retention was a huge problem for me and I am medically obese.
My calves and ankles look like toothpicks now compared to what they did before.

3

Wow. I have several pertinent comments and I have to hope with my gab brain I can remember this. First congrats on that BMI, that’s a really nice one! Once an error is in your chart it’s very difficult to correct it, especially with the new Electronic Medical Records. I found that it can only be done by that original ordering physician. My husband had a stent put in a few months ago. In the course of disputing some charges, we found an incorrect diagnosis for a condition my husband doesn’t have (a bleeding disorder). He’s a carrier as our daughter and his two sisters have it. He was tested before his knee replacement two years ago and for some reason his cardiologist mentioned it in the surgical notes.

The good news is that in a lot of these new forms, the top 10 or so listings don’t have that in there, but we still want it removed. I was with my mother at a doctor’s appointment and I heard the doctor dictate two factual errors, the date of her surgery, and the knee which had the surgery. I told him that, he dismissed me saying it wasn’t important. Yeah, doctors! Good luck getting that out, did you talk to the original physician’s office? We called my husband’s doctor and the nurse said she can’t do anything about it, tell him when you see him in the future! Unbelievable.

BTW, we’ve posted in these forums together multiple times, I knew you had a hard time from gab, but I didn’t realize you went cold turkey in such a short time. How horrible, but I think you’ve written that you’ve finally recovered fairly well. But I think some things are never the same after this drug. I was at 2700 but took 3 years to get to zero, holding at 300 for 5 months before I stopped. It’s going…OKish. But nothing like you and others have been through.

4

As info,
I was given Lasix for the edema about 2 months before I started tapering and it didn’t help but I still kept taking it. It got much worse when I was tapering and after I quit but was still taking the Lasix. Finally stopped the Lasix last month and boom, it subsided.

5

I made two changes with medication. First, I discontinued the gabapentin in six days from a 1800mg (600mg X3) per day dose in July 2016, and discontinued the very small dose of Percocet 5 mg per day, in December 2018. I would split the pills in four 1.25 mg doses.

I wish I knew where and when all my medication problems started. I get by with acupuncture for pain relief and refuse to go back on medication after all the problems.

All I can say, is the increased nerve pain was severe since the day I stopped the gabapentin. Also, I feel an internal nerve “shaking” that continues to this day. It is severe at times and awakens me at night. I don’t know if the opioid caused a problem, and the gaba covered up the side effects, or the whole problem was the gaba. Three and a half years later I am waiting for the nerve pain to get better and the shaking to end. At least my brain feels better without medication.

I cannot get a straight answer from any physician. I wonder if they know, but since both medications were prescribed from their practice, they play dumb and hope I drop my line of questioning.

I tried a couple of times to get my medical records corrected, but they seem uninterested in making the corrections and I am hoping I have an excuse to leave this practice. It is complicated in the U.S. when it is a work related injury. Also, this group of physicians have five offices in the area and a monopoly on pain control for several towns in the area.

I hope you are well. Take care.

6

I assume you’re familiar with PAWS, Prolonged Acute Withdrawal Syndrome. That’s what happens when someone stops gab or similar drugs too quickly. It can last years but for many people does improve or even resolve. I’m so sorry you’re dealing with this. I’m very lucky and grateful that I learned about this before I started dropping too quickly. In the beginning I did my second drop two weeks after my first, then four weeks for the next two then realized that was TOO fast for me. I think my later schedules of 8-15 weeks ( vacations or holidays I took much longer to avoid WD during those times) have really helped me.

Doesn’t it seem impossible that doctors don’t know this can happen? The word is slowly getting out, but not fast enough. It was so sweet to ask how I’m doing. Compared to others, pretty well. It’s been 7 weeks since my last gab and when I know how bad it’s been in the past or what others have going through, it’s not so bad. But it’s still no easy. lots of down days (I don’t want to say any more or the bots will flag this) but my PHN may actually get greatly improved so I’ve only got stretches of discomfort, no severe pain. The gab definitely was causing the pain, but not all people have underlying health problems that can improve, I was lucky. It took years, but it’s better.

7

You bring up a good point about PAWS. I am familiar, and wish I had stood up to my physician, but I did not realize I would have such a lengthy, difficult period.

Besides, my physician was a bit difficult. He disagreed with my decision to discontinue gabapentin. After loosing 30 pounds of fluid in 30 days, he still thought I was wrong to have discontinued the medication. Also, at that point I was on Percocet 5 mg maximum per day. I was trying to go off all medication and he repeatedly told me I was stubborn and would not accept my lot in life.

Thankfully, I no longer see this physician. He was promoted as head of pain control at a large hospital. I hope he has learned a few things in the last couple of years, because this was a physician that thought he knew it all, didn’t listen to his patients and thought it was o.k. to insult them.

Good luck to you.