Gabapentin and the elderly

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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

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.