Gabapentin and the elderly

Treatment and medication
1

My mom is 81 and has been on Gabapentin for almost 3 months. She is on 400 mg twice a day and 600 a night. She had severe leg ulcers that caused intense nerve pain. Her ulcers are finally clearing up. They are closing up and her nerve pain is almost gone. She’s had 2 hospitalizations and 2 rehab stays. When the pain was severe she refused physical therapy and now is working her way back to some strength. We thought her memory and cognizant abilities were possibly demensia. However since the pain has eased up, she is getting better in that regard. Exams at the rehab indicate no demensia or alzheimers. However, her memory, etc are still not anywhere near where she should be. I am now realizing it most likely is the Gabapentin.

At her last Primary Care doc visit she was resistant to discontinuing because she is afraid of the pain. She is now getting worried about her memory, etc. and is willing to try. The PC suggested 300mg 3 times a day to start off. However from what I’m reading, this might be too much. She is in an assisted living while she gets her strength back and that’s doing well enough she will probably be going home in a couple weeks. She lives alone and there doesn’t seem to be any reason she can’t do it as of now.

Will her withdrawal be less because she has been on them for a shorter time?
Or will they be worse because of her weakened state and age?
Her anxiety issues seem to be under control. She started Cymbalta about a month ago and we thought it was that. Does the Gabapentin also help anxiety?

I’m pretty confused and want the least upsetting way for her to come off of this stuff!

Thank you!

2

You are right to be concerned. The general consensus from others on this site is to taper slowly over time to avoid (most) issues. However each person is different so can only give you my personal perspective.

I was taking 300 mg 3/day for a couple of months. Decided it wasn't really helping my issues, just making me draggy and foggy brained so started to wean off last week.

My GP suggested 200 mg 3/day for 2 weeks and then 100 mg 3/day for 2 weeks. However, based on the feedback from others on this forum, I'm doing 300 / 200 / 200 for 2 weeks and then plan on 200 / 100 / 200 for 2 weeks and then 100 / 100 / 100 for 2 weeks, etc. Some people have suggested 100 mg / week reduction so I'm somewhere in between that and my GP's suggestion. So far so good.

Good luck to both you and your Mom!

3

Hello DEB0926. NOT SURE, but my experience would be helpful but im willing to share. ive had my share of health issues in the last 7 years. GABAPENTIN was a drug they decided to try with me for chronic pain issues in my shoulder girdle and neck, right side. The DR. started me slowly then added when we were not seeing things stabilize. So eventually i was taking 2400 mg total of GABAPENTIN a day. what did i experience? CHAOS! Cognition greatly impacted. I could not remember much of anything that mattered or that i needed to not forget. My brain was like a sieve. i could not keep attention to much. would get upset, cry easy, felt the most stupid id ever felt. knew i was suffering but didnt know why. Eventually i decided to lower my dosage (with DR support) to see if my foggy wonky brain would change make to normal again. IT DID! I took my last gaba in MAY. I weaned from it low and slow, like every month ID drop another dosage. do i still feel at odds with my brain function still. yes. but its not nearly as bad as feeling like your not in control of thoughts or how to problem solve. GABA as far as i have read, is supposed to be a temporary situation and not a long term use drug. i had been on it for 3yrs. it did not yield me the results that were suggested i'd see so the question then became if it was not doing the job of regulating pain and i had these skimming of brain cognition, why was i on it. if your sweet mom want to leave GABA behind, i say go for it. Wean with a DRS advice because too fast can have its set of issues. Good Luck to you both. I hope i was able to give you one story to refer to. Blessings!

4

I'm so sorry to hear this. Thank heavens she has you to look out for her. Unfortunately her situation is very common as doctors have no understanding of this drug. Some people don't have problems either with the drug or with getting off it, so there's no predicting how she'll react. Adding Cymbalta adds to the problems. I'm telling you this as background, as there are no easy answers, particularly when there are multiple meds.

Janet and CJ are correct that support groups recommend a 10% drop or less over 4 weeks or longer for decreasing gab. She's currently at 1400 mg, so dropping 100 mg (TOTAL) is the best way to start. The doses should be fairly equal so 400, 400 and 500 is my suggestion. (There are a lot of questions and issues here, I'm trying to decide which to answer first). For a very small group of people gab can decrease anxiety, so doctors think it's good for that. However, it can backfire and also cause extreme anxiety, fear and panic attacks, along with depression and the many other symptoms you may have read about. Memory loss, confusion and brain fog may be the most common problems. As the dose is slowly decreased it will improve. I've been on it for shingles/post shingles pain (PHN) for almost 3 years. I'm extremely sensitive to it, have difficulty with withdrawal so am going very slowly. I was on 2700 mg in December 2016, now down to 300 mg. My memory and cognition is much, much better, but I'm not back to normal.

It may be difficult to get a doctor to listen to your requests for the slow decrease, particularly as she's under their care. You NEED to advocate for her. It's wonderful that you're getting informed. Most doctors don't even read the FDA data sheets or warnings about this drug.

It's hard to predict how she'll react, it is extremely individual. But as she's been on it a shorter time, that's definitely in her favor. Is she aware of your concerns? If she's fully alert, read more about gab and talk with her. If she too can have a clear discussion with her doctor that will help.

I know it's tempting to go quickly, but that may make for a much worse withdrawal. If you can read articles also pertaining to benzos in groups like Inner Compass and Benzo Buddies, you'll get wonderful information. I wish this had never happened to her, or the thousands and thousands of us who have been affected by this drugs. I hope this is helpful.

5

Thanks for your input. It's good to hear you are having success with your regimen. It's that 600 at night that has me concerned. She used to have sleeping issues and hasn't had them for the last couple months. Now I know why! She gets very agitated when she can't sleep. According the doc, the 300 would be cutting it in half. I don't want to do that.

6

Thanks for your input! I'm worried the PC is going too fast by taking her down 500mg per day at first. Your description of cognition being on the gaba fits Mom almost completely. She just put it down to being in pain and recovery, and so did we. I'm thankful she has only been on it a short time.

7

Thanks for your response. I'm happy to hear you are doing better. I will check out those other groups as well. She's alert, but I'm concerned about her reading some of the withdrawal effects. She is not very tolerant of discomfort of any kind. If she stubs her toe it's a major event. She does not remember very much of the last couple months at all. Well heck, she doesn't remember much from yesterday, either, LOL. But like I said now that the wounds are healed and the nerve pain is pretty much gone, she id doing some better. When that was going on, she didn't care if she remembered. Now she cares and is getting very frustrated with herself. I've told her some of what I read yesterday and she is understanding it is side effects of this. She was so afraid of the pain if she went off (a couple weeks ago). Now she is afraid of staying this way and wants to taper off. I've got a call in to the doc to verify a starting point and see if we need to come in.

8

Some 80 year olds are sharper than some 20 year olds, but it seems that saying too much may just overwhelm your mother. You're between a rock and a hard place. It's hard to say, but it seems that more than half the people don't have much trouble with tapering (the phrase we use, not weaning) but you don't know until you start. If it goes too quickly and the problems are very troublesome, there's really nothing that can be done but wait. Doctors try and throw more meds in, which makes it worse.

So it has to be decided which is worse, the possible problems which may occur with the decrease of the meds or maintaining what she's doing now. Some withdrawal symptoms are worse than others, some withdrawals are harder than others but everyone I know is glad once they're off it. We also feel some feeling of control, pride and accomplishment as we improve. But the WD symptoms may be sporadic or go on for days and each taper may take 4-6 weeks to be stable or better. This is NOT decrease the drug, feel lousy the next day, wait 4 days and you're fine. Once people understand that, as we're all getting used to instant relief, it makes it a little easier. There are ups and downs, or as we say Waves and Windows. Waves of symptoms, then Windows when you feel better, think better etc.

9

Thanks again for your input. I talked to the doc this morning and he is pretty much shaking me off on doing it slow. I pushed back but no luck. So starting tomorrow it's going to be 300mg 3x a day. He says for a week, and we'll see. I didn't tell her much. Just that she might have some side effects. Doc said she wasn't on it long enough. That she might have some trouble sleeping. I guess all we can do is go day by day and say lots of prayers. If things go haywire, we're doing it my way after the first go round! I will just keep telling her that there will be ups and downs and Waves and Windows, just like what she went through with getting her legs healed. I can see where you would feel that feeling of control, pride and accomplishment. Good for you!! And all you folks who have battled this. My gosh, seeing my mom like this is crazy. Mid May she was completely independent with a bit of age related memory issues (heck, I'm 63 and have those!) She drove and took care of herself. Now she's afraid to make a move without asking if it's okay, because she is so confused about things. She is still insisting on coming home next weekend, so I sure hope this goes okay.

10

Deb0926,

As far as sleeping concerns I do take Zolipidem (ambien) with the gaba at night. It's pretty strong so likely not what your Mom needs. After literally decades of bad sleeping (and trying every option you can think of to sleep) I finally gave up turned to pharma drugs to help me sleep a couple of years ago (I'm 61). I took Zolpidem before I started the gaba and plan on keeping the zolipidem after I taper off the gaba. It's just wonderful to feel rested!

A friend of mine was prescribed 200 mg of gaba to help her sleep and only for this reason. It really helps her sleep with no other effects that she can tell.

There's certainly a lot of OTC options as well for sleeping that I tried in the past that do work for other people like melatonin, advil/sleep, etc.

Good luck to you and your Mom! Let us know how things turned out. We're here for you both.

11

DANG! I had a very long, response, then the site crashed. None of that was saved...I'll try and remember what I wrote (a challenge with gab brain.) It's no surprise the doctor reacted this way. Try asking if he would at least drop the 600 mg to a 400 mg, a bit of a compromise. That 200 mg dose would only be a bit more than 10% so it's less likely to cause problems. But she will still likely have some type of withdrawal. However, for some people, it takes longer than a week to show up. In all the discussions and groups I've been in, I'm not sure if I've heard of anyone saying their doctor knew about gab's side effects and withdrawal. That's why unfortunately, we turn to the internet. There are some wonderful sources here, but docs dismiss them. If you suggest this slight change, it shouldn't seem adversarial. Ask what harm there is on going slower. Say you can always speed it up. But remember 5-10% over 4 weeks or longer is the best way to do this, but there will likely still be withdrawal, no matter what. However, some people don't get the stronger side effects till several weeks after a drop. This is NOT linear or consistent.

Her fearfulness is common, in fact my CVS bottle lists "fear" as a side effect. I told my husband I went from a strong, vibrant 61 y/o woman who was hiking in the National Parks when I got sick, to a withdrawn, frail-feeling person. It steals your personality and your emotional strength. Its very scary to have the symptoms that gab causes.

You're doing a fabulous job for her, keep the communication open with the healthcare providers and support system. They're acting out of ignorance/lack of understanding. They truly believe there's no harm to this drug, but now you and your mom know differently.

12

Well I buckled under and went with what the doc prescribed. Unfortunately the assisted living facility will only give what the doc ordered so I couldn't do my own thing. It's only been a few days but so far no symptoms. I hadn't read before that it could take up to a week. I was thinking maybe we were doing ok. She's supposed to taper down again on Friday. The AL won't change anything until the doc sends orders. So I am going to hold off on requesting the 100 mg until 2 weeks after just in case. She'll be back home by then. My uncle, a retired pharmacist, is coming in to visit when she gets home and stay with her while we see how she does at home alone. The gab brain I'm certain will still be alive and well! I am just so afraid at her age this might be a new normal. I so wish she would have stayed in the AL. Physically she is doing good, getting stronger everyday. But if the gab brain doesn't go away..... Thanks again to all, I will keep you posted.

13

Thanks for your support, Babs. I really hope once you are off of this nasty stuff for awhile you'll be more like your old self.

14

Thanks for your input, Janet. Be careful with the Ambien. I have a friend who just went through a long tapering down to get off of it. I don't know the details. But it wasn't good. However being someone who likes their sleep, I can agree with you. If I don't get my sleep I'm not worth a thing. I'm saying prayers and crossing my fingers this taper down doesn't affect her sleep.

15

Deb, this is a rather strong suggestion, but your mother can refuse to take the meds. The facility has to hand out the prescription as written by the doctor, but no patient is forced to take a medication they don't want. We tend to forget that we are partners in healthcare with our doctors. Just because you're old or in a facility doesn't mean you give up your ability to, if you're cognitively able,-otherwise it's the person who has the written authority to do so acting as an agent-refuse a treatment or medication.

I know this could be adversarial. And in this case, he's not giving the higher dose that she needs, which makes it tricky. Can you talk to your uncle about this? I can stop giving suggestions, if these are unhelpful. It's just so incredibly infuriating, as I know so many people harmed by these ignorant doctors. I hate to see this train wreck coming, when it can be prevented.

Two weeks is the suggested window for going back up on a drug, if the decrease was too great, but that's not cut and dried. As far as the week before WD symptoms showing up, there's a wide range in individuals. Getting inter-dose WD symptoms is common, i.e. as it gets closer to the next dose, you can get increased pain, anxiety, whatever, that's why some people take it four times a day. But once you're actually tapering, there's a smaller percentage of us who get our problems several weeks later, most do see something in the first few days. I'll get a few mild symptoms in the first two weeks, but they're short-lived and not severe. It's 4-7 weeks out that I get several days in a row that are bad.

Best of luck, I'm not a praying woman, but I'll be saying some prayers for you and her.

16

No, please, I don't mind your suggestions at all. We're on Day 4 now and no major changes. She mentioned this morning that she didn't sleep good last night, but it wasn't really a complaint if that makes sense. If it was really bad sleep she would be darn cranky about it. She just mentioned it in passing. And you are right! We/she is allowed a say in her health care. She isn't talking about possible side effects at all, but I didn't make a big deal of it. She mostly talks about getting her memory back.

I talked to my uncle about it, but he's been retired long enough that he had never heard about the difficulties with gabapentin. He seemed reluctant to say much on the subject of tapering differently.

We went to wound care yesterday and the left leg is now healed over with fresh new skin. The right leg probably has about 2 more weeks. The new skin has covered up the dermis on both legs so there isn't nerve pain anymore. I'm hoping she won't experience any pain while tapering off since the original reason is gone. She has anxiety and sleeping issues to begin with so that might be where the problem happens. If anything more than normal happens I will insist the nurse give her an extra 300 at night until we get her home and doing our own thing. (it would be within the 2 weeks you suggested for going back on) . Then we'll taper down 100 mg at a time.

Thanks for your guidance and prayers for both of us. She and I don't have the type of relationship to spend much time around each other without driving each other nuts. We need all the good wishes we can get even under normal circumstances!

17

That's some good news about her wound care working. My mother-in-law had issues and it took almost a year and a different doctor with a new treatment plan to heal her legs. I was thinking about you saying there may not be nerve pain, as the legs are healing. Remember, I'm not a doctor or nurse, just picked up a few things over the years working as a medical secretary and researching since I got sick, so these are broad, unscientific explanations.

There is nerve pain and "nerve pain". Pain is felt because of the nervous system conveys that information to the brain, we then feel pain. So the nerves are involved with all pain. However, "nerve pain" in the medical sense (should, but doctors don't seem to understand this) means the nerves themselves, those pathways, are damaged and sending faulty signals. (I'm sure a neurologist would call this an extreme simplification.) When I had shingles, the nerves were damaged, so while there was no true pain, they still sent out pain signals. Just like when there's an amputation, pain is still felt in that phantom limb. There's a disconnect with the brain and its neurons, synapses etc and our perception of pain. Drugs like gab are supposed to make the brain block those signals. Remember, it's an epilepsy drug and is approved for only two other kinds of pain (for which it only had to reduce pain in 50% of the people in a relatively small trial). It is NOT like taking aspirin for a headache or taking an opioid.

Which brings me to this. During withdrawal, the "pain" may come back. This is NOT pain from the original illness, injury or trauma, it's the nerves getting that signal to the brain. That's what happens during withdrawal. My pain I have now is real, it HURTS where I had the shingles. However, that pain is being set off by the interaction of the drug and my brain. As my withdrawal progresses, my pain will go away. Other's aren't so lucky. They have pain caused by damage to the body doctors had hoped the gab would help i.e. sciatica. As they get off gab, we can't say how their pain will be. I believe my PHN, Post Herpetic Neuralgia has healed to the degree that off of gab, I'll just have some discomfort.

IF she has pain, it would likely be from the withdrawal, NOT from a new infection. I use Tylenol and Aspercreme with lidocaine to help me with that pain. I was astounded when a friend told me of her friend who had pain as she was getting off opioids (short-term use, post-operatively). She complained to the doctor about the pain and he said, oh that's just the withdrawal, it will go away. Hardly ANY doctors understand that. And that's your wordy, Public Service Announcement for the day.

18

You are a WEALTH of information, thank you so much. Her PC said he didn't want to taper down on the Gaba again until he sees her. Maybe he did some looking into it after I questioned him? I hope so! She's hanging in and isn't complaining about withdrawal. However now she has a new sore on her 'good' leg. She's wrapped back up again but that's good and tight and shouldn't produce anymore. That was too quick tho. Wound care wanted us to contact cardiologist about edema so now a diuretic is prescribed. The fluid has to go somewhere so it came through the skin again, even with a CirCaid wrap and compression sock.

This whole thing has been such a learning experience! I know I'm going to get myself in better shape.

We have a PC appt next Friday so we'll see what he has to say!

Have a good weekend Deb

19

I'm just trying to pay it forward. I don't know what I would have done without PatientInfo when I got shingles or this group once I realized what gab was doing to me. My Facebook group has been an absolute godsend too. Have you checked your private messages in this group? I sent you something.

You may have gotten thru to your doctor. I think I mentioned my doctor eventually realized also. I try and use info only from trusted medical sources of people that I know are accurate and informed. Have a good weekend and I'm glad that things are going OK so far.