LindsayI will admit that I am bad about identifying when my posts have content that might be triggering for some people. I will try to be better about that in the future. Sometimes I forget the non-obvious topics that can be triggering for some people, and I apologize for that.
But this one’s obvious. If you are triggered by discussions of depression or suicidal thoughts, skip this post. I can summarize it for you in a single sentence: If you have suggestions for effective treatment for nerve pain other than gabapentin, I’d love to hear them.
The title of this blog post comes from a 1940 book written by C.S. Lewis, The Problem of Pain. For Lewis, the problem of pain is reconciling it with the existence of god. If god is a loving and all-powerful god, It wouldn’t let us suffer. But we do suffer, so god must not be good, or not be all-powerful. It’s an interesting ideology, and one which I love to debate. While I appreciate the philosophical question, god’s goodness or omnipotence are not relevant to my pain. 
My problem with pain has been finding a treatment that helps with the pain, but doesn’t harm everything else. If you have read this blog long enough, you may remember that in 2019 I started to experience some severe nerve pain. I was referred to a neurologist who suspected I have small fiber neuropathy (SFN). SFN is common in people with POTS. You can read more about it in this post: pots and small fiber neuropathy…
I was prescribed gabapentin (brand name; Neurontin) for the nerve pain. I have a history of being very sensitive to medications, and was started at the small dose of 300 mg of gabapentin. Eventually that was raised to 300mg in the morning and 300mg in the evening, but that caused extreme fatigue, so I went back down to just 400mg in the evening. The pain is always worse in the evening, so taking it at night helped me sleep better.
The gabapentin helped. It made me tired all the time, even just at 400 mg, but the severity of the nerve pain lessened tremendously. The nerve pain never completely goes away – neuropathy isn’t curable, after all, but on many days it was so mild I didn’t really notice it. At the very least, I could have something like the bedsheet touch my legs again without wanting to cry in pain.
Last year, not long after the pandemic started, I began to feel a little depressed. It seemed normal, if not expected – my mom had died a few months before, the world was shut down due to COVID, and I was isolated from my family. I think I would have wondered what was wrong with me if I wasn’t a little depressed.
But then it got worse. 
Depression – severe depression – runs in the women in my extended family. My grandmother died by suicide and I have other female relatives that have battled severe depression. I have always felt very fortunate that I seemed immune to that particular familial gene, because after watching other family struggle, I knew how bad it could get.
But several weeks into the pandemic, I found myself in a similar place some days. It wasn’t immediate, and it wasn’t constant, and that’s probably why it took a while to see a pattern. It didn’t happen everyday, but on days where it did occur, it was severe in the mornings. There were days where, while using the bathroom after finally getting out of bed, I would be overcome with an intense sense of dread. On those mornings I had to promise myself I would still be alive at the end of the day. I thought it could be hormone related, but by the afternoon, the sense of despair would pass. I was still a little stressed and anxious throughout the day – trying to work, take care of my health, and keep my father-in-law safe during the pandemic will do that. But it was different. It was manageable.
I’m embarrassed to admit, because looking back now it was so obvious, but it wasn’t until I remembered a comment from a reader of this blog (thank you!) that I realized gabapentin could be partly responsible. I researched whether there was a connection and found there have been several studies linking gabapentinoids to depression and suicidal ideation. See here and here. Gabapentinoids are a class of anticonvulsant drugs that include gabapentin (brand name: Neurontin) and pregabalin (brand name: Lyrica) and are prescribed off-label for neuropathic pain. In recent years with the opioid crisis, doctors are replacing Oxycontin and Vicodin prescriptions with gabapentin. According to this article, the prevalence of gabapentin prescribing nearly doubled from 2009 to 2016. Gabapentin comes with a black-box warning, but so do plenty of other medications I have been given in the past. There are case studies of a number of people who died by suicide or who attempted suicide while on gabapentin.
Gabapentin has a fairly short half-life. If I take it at night right before bed, it’s still in my system the next morning, but by the next afternoon, the concentration would be vastly reduced. So it seemed like a possible culprit for the unusual thoughts I was having, especially when those thoughts predominantly occurred in the morning, but I wasn’t sure. At that point I had been on it for over a year without issue, and I didn’t think it would suddenly start causing problems.
I was worried that by stopping gabapentin, the severe pain would return. I was worried that by not stopping gabapentin, the severe depression would continue. I chose to risk the pain and stopped taking gabapentin cold turkey.
Within days I noticed a substantial decrease in depression. Everything wasn’t rainbows and butterflies – after all, we were still in the middle of a pandemic, and my mom was still dead. But it felt manageable.
And fortunately, the pain remained mild. Until I got both COVID vaccines.
As I mentioned in a previous post, the Pfizer vaccine increased my nerve pain a little. It’s not awful by any means, but it’s there. I’ve had neuropathy long enough to recognize some of my triggers, but not all. Some days hurt and I don’t know why, but I think that’s always true of chronic illness, and life.
And on those days I might need a little help with the pain. I have been managing okay thus far, but I’d like to have something on hand, for the same reason I still carry beta-blockers that I haven’t taken in 14 months in my purse – things can change in an instant. The next flare is always just around the corner.
Plenty of people take gapabentin without experiencing depression or suicidal thoughts. Most of the journal articles I read about the link between gabapentinoids and depression/suicide identify the risk as being low enough that it’s not statistically significant. In a study of people taking gabapentinoids, 5.2% were treated for, or died by suicide. So if you’re on a form of gabapentinoids, you likely will never experience those side effects.
I don’t think the gabapentin is the only reason I was in a bad place for a bit last year – I’m sure it was a lethal combination of hormones, grief, loneliness, and a nihilistic dread caused by the pandemic. And someday, if the pain is much worse and nothing else is working, I’d consider trying gabapentin again while keeping a close eye on any signs of depression. But I’m not ready to give it another try right now.
I have a doctor’s appointment this week to discuss options. So friends, I would love to hear what you find helpful for pain.
“…nor have I anything to offer my readers except my conviction that when pain is to be borne, a little courage helps more than much knowledge, a little human sympathy more than much courage – C. S. Lewis
Smell ya later.
– Linds
I don’t have pain med recommendation but I can corroborate your gabapentin experience. I’m well aware of my susceptibility to black box warnings and I knew from the very first dose not to take it again. It triggered profound depression and despair which was bizarre because I was having a great day sledding with my son. That experience helped me differentiate severe depression from cognitive deficiency that follows days and weeks of adrenaline overload. I often worry if it’s all hopeless and there’s no help, but on gabapentin it was a certainty. I’m just becoming acquainted with dysautonomia after a year of symptoms without a clear diagnosis and doctors maybe gaslighting or being skeptical and incredulous about my symptoms, which check a lot of boxes. I hope you find relief.
Hi Pete, Thanks for your comment. You did an excellent job of describing what it was like for me on gabapentin. Even when I was otherwise having a good day and doing something I usually enjoy, I would have an overwhelming feeling of despair.
I’m so sorry to hear about the gaslighting you have experienced. I hope you are able to find a good doctor that listens and believes you.
I do not know that pain, but I have more than a passing acquaintance with chronic depression. All I can tell you is that I care, and I’m sorry. Find someone or something solid to hang on to.
Thank you!
I’d noticed you hadn’t been online as much since your Mom died, but I hadn’t realized there were other things going on and I feel sad I didn’t pick up on that, so firstly 🤗🤗🤗 hugs.
Is it worth switching from Gabapentin to Pregabalin? Only reason for the suggestion is that my Mum didn’t do well on Gabapentin but does really well on Pregabalin for nerve pain so there may be a subtle difference in the mechanism which might not bring on the depression.
Other than the anticonvulsants, nerve pain is just so hard to treat. Is it all over pain, or localized? My back pain is helped by my TENS machine with 2 sets of large (10cm) pads and it’s also been useful for the shooting nerve pain down my legs if I can find the first trigger point in my lower back.
Might it be worth trying some of the antidepressants which are used for pain, like amitriptyline?
x
Thanks, Jak. I think I haven’t been online much because I just don’t feel like I have anything to say. Previously my primary social media persona was light-hearted and humorous. I don’t really have anything light-hearted or humorous to say lately, but I hope that comes back someday.
That’s interesting about your mum – perhaps I would have a different experience on pregabalin. If nothing else, I think I have a bit of an advantage now that I could keep an eye out for symptoms of depression – I was totally blindsided by it with gabapentin.
My neurologist has also talked abut amitriptyline and cymbalta as possibilities, but antidepressants make me nervous. I didn’t love the SSRI I was on previously, but I know that tricyclics and SNRIs could be different. I also have a few POTS friends that take LDN for pain, and might ask my doctor about that.
very well done for talking about this.People never see the every day effects.there views/judgements are very Snotty Nosed,, i have BOTH m.e .and Fibromagyia the list goes on ..migraines ..ibs …my blog.http;//mark-kent.webs.com twitter.supersnopper MARK
Hi! I also have chronic pain and POTS, for pain my psychiatrist prescribed Velija 90mg which has helped me a lot to withstand the pain, for days I hardly remember them, check with your doctor if this medicine is available in your country.
Hug!
I’m not familiar with Velija – I will look into that. Thank you!
Hi Lindsay! I found your name and story kind of randomly as I was researching POTS and something told me to contact you and tell you about something. I am a POTS patient, only diagnosed after more than 5 years. You can probably imagine how terribly I have been treated by doctors and even family with invisible & undiagnosed illness all this time. Would you consider trying a carnivore diet? You might be, like myself, reacting to most of the foods you eat. I know it may sound extreme and the (convenient) lack of proper studies might worry you, but there is no lack of extreme success stories for many types of chronic illness under this diet. I tried it myself and it is THE thing that immensely reduces many many symptoms. Headache, pain, especially neurologic-type pain, allergies, insomnia, fatigue and brain fog, and gastrointestinal irritation, including reflux, diarrhea, and weird stomach hunger. The main issue is that a full carnivore diet will lead you initially through the ketogenic adaptation (keto flu), which shares a lot with POTS symptoms and can last a few weeks. However, it only starts after roughly 3 days once you start the diet, and you could already see symptom improvement that quickly, but I wouldn’t advise every POTS patient to try full carnivore. But then, I decided to try an obvious change to this. I find out and add a single source of plant carbohydrate that I can tolerate – so far it is only white rice. This prevents the keto transition – at least 100 g of carbs a day is a safe low-medium carb level to stay in normal carb metabolism. And bingo – the benefits of carnivore stay!!! And what is best, it will take a VERY short time on this “only meats + rice” diet to notice all the symptom improvement if it is really a response to plant foods. Maybe even a couple of days – I feel better day of already. So really the investment on this mode of diagnosis+treatment is very low. You have tried many things along the years with higher risk and side effects, so what do you have to lose? Do it for 1 week and start when you are sicker if possible for contrast. If it is horrible, you’ll never do it again. But if it works, you will have a shot at ACTUAL healing. Not “coping”, not “learning to live with”. If you’ve read this far, thank you a lot! 😀 God bless you.
Hi Suzane,
Thank you for your comment! I hadn’t actually heard of the carnivore diet, so thank you for sharing.
On the carnivore diet, do you only eat meat (other than the rice, as you said)? No fruits or vegetables? How do you get all of the vitamins and minerals that are not found in meat? Is it difficult to make meals and get enough calories?
Hi, thanks for the reply!!
You can find lots of info online about the diet, even from some doctors like Paul Saladino. I also like Amber O’Hearn, a smart long term carnivore woman who wrote good materials on her website. The diet only includes animal products, so other than all types of meats it could have eggs and dairy, but eggs and dairy are inflammatory & allergenic for many people including me, so stay away at first. The idea is that plant compounds might actually cause inflammation, autoimmune disorders and mental illness in some people. Since there have been no trials yet, the only way to find out if that’s your case is by trying it. 1 or 2 months are likely very safe and could at least give you an answer to what causes your issues. If you see improvement and decide to stick to it, deficiencies are unlikely especially if you include organ meats (very vitamin reach). But long term carnivores should follow up with blood work and supplement things if needed, like magnesium. It is actually way too easy to meet calories in my case, haha, but most people are so satiated they only eat once a day. Full carnivore is zero carb and will take you to fat metabolism, so in that case you must eat fatty meat and will go through keto adaptation at first, which is tough. In my case I have carbs now in the form of rice. Funny enough, it was the bad hives while once again eating a more “normal” diet that helped me find out rice was safe – just meats (chicken, beef, fish) and rice would not bring about the hives. Other anti inflammatory diets that are less extreme are the AIP diet and maybe the ketogenic diet, which has low carb plants, but carnivore is the ultimate elimination diet. If it does not make one feel better, then these other ones probably won’t either.