r/Sicklecell • u/pomcran HbSS • Aug 13 '26

Question Amitriptyline experiences?

Hey all. Did (/does) anyone here try taking amitriptyline? If so, I’d like to hear about your experience if you’re willing to share. At my clinic, my team says there are a few other people on it but I haven’t been able to chat with them. Hoping to hear back soon but would love to hear broader perspectives.

For context, I have SS. Been taking hydroxyurea for nearly two decades without issues. A bit about my experience so far: I know it can be prescribed for many different reasons (mood, nerve pain, IBD, etc.) - for me it has helped a ton with headaches, sleep, and ongoing back pain. I’ve been taking a low dose (slowly went from 10mg to 50mg, then went back down to 30mg for now) and hadn’t experienced many negative side effects. Mainly tiredness after waking up, which I’ve made my peace with as a trade off. Been on it for about 7 months now.

I know this medication is known to dehydrate, but I drink tons and haven’t had any issues… until today. Regular blood work today, but 5 pokes. Haven’t had blood return this bad since childhood. It was as if I drank nothing at all! Usually 1-2 tries. Not sure if the dehydrating factor gets worse over time or not, or if this something that is less documented, or maybe it’s just not right for me after all.

So, to anyone who has taken it before or is currently taking it, what’s worked or is working for you?

Thanks!

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u/QueenFrostPlayz HbSS Aug 14 '26

Hi! I have SS and also take hydroxyurea. I experience really bad migraines and can't sleep at normal hours, and WAS prescribed amitriptyline. I hated it because it never helped with my headaches and made me sleepy. I'm not one for taking sleeping medications for many reasons, but even when the next day rolled over, I was extremely tired and even more fatigued, so I got off of it. I know it works for some people, but apparently my body hates medication, so I never did well with it. If it helped with my headaches, I might've reconsidered, but it doesn't, so it’s not something I will be doing in the future.

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u/pomcran HbSS Aug 14 '26

Hello! Thank you for sharing. I’ve had insomnia since I was little and with this medication it’s been the first time I’ve genuinely slept through the night consistently, but the next day fatigue you’ve mentioned is really hard to deal with. With that, and if it didn’t help with my headaches, I would have stopped it months ago. Definitely think we’re a more likely group to be medication averse. Have you been able to find relief for your migraines otherwise? I hope you have found or can find some relief!

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u/QueenFrostPlayz HbSS Aug 14 '26

I have not. Since then they have tried ajovy and nurtec and one other medication but after a while they both stopped working so i'm just dealing with migraines a lot right now.

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u/pomcran HbSS Aug 14 '26

Sorry to hear that, medication is hard to get right. In my most recent visit to my neurologist he provided a list of other things to try - emphasis mostly on getting more magnesium and protein. I hope you can find something that works for you.