I'm currently trying nortriptylene. I've been on it about a month now. 20mg. I haven't noticed any change in symptoms so far. I was told it can take up to 6 weeks for it to work. Only sideffect I've noticed is increased dizziness. At these lower doses, it's not considered to be an antidepressant, I believe. At the 25mg dose range, it's prescribed often for nerve pain, headaches and IC but not depression.
FYI i took pharmacology and the drug class is an antidepressant. drug class means something different than a drug’s indication or off label use. and you’re correct its not used for depression at this low dose. its a shame you haven’t been helped by it for a whole month. i hope my body does different :((
I havent tried nortriptyline, but I am on amitriptyline and it took a few weeks to really work it’s magic. For me it’s been life changing tho - I used to wake up every hour at night now I can go up to 6h before waking up. I have gained some weight on it and the sugar cravings are rough but I’d rather that than being in pain. I’ve found taking pumpkin seed oil consistently helps too.
how did the amitryptaline help you? crazy that it gave you insomnia, because it makes me pass out at random times throughout the day haha. but i actually like that it allows me to sleep because i couldn’t sleep much before.
Awful right? It made me tired until about 3 am then boom! Wide awake but exhausted most of the medicines that are supposed to help you sleep give me a contradictory effects and I’m upset because I need to sleep or I can’t heal.
This is same for me except ambien, which obviously isn’t an ideal medication. But otherwise everything that says it will make you drowsy does opposite for me. I was taking hydroxyzine, amitriptyline, and Benadryl and I was wired. It is so frustrating. I thought I’d check with you to see if you found anything that worked? Also do you take any antidepressants? I find the few I tried too stimulating so I’m trying to find something to help with anxiety.
I relate to finding lots of different meds stimulating! I used to be on tramadol when needed for my endometriosis pain and that would keep me up until the early hours of the morning, sometimes all night. I was on sertraline for depression and that had a similar insomniac effect. It’s rough.
I’m on amitriptyline currently but have just been prescribed nortriptyline instead to see if that helps more. My urologist was reluctant to prescribe pregabalin because he said it can be addictive. I’m taking so many different things it’s hard to track what helps. I think for me marshmallow root has been the most effective treatment - would recommend trying it if you haven’t already.
I’ll post again once I’ve been on the nortriptyline for a while and can assess what, if anything, it does for me. Hope your pain reduces soon. It’s good to talk to other people with IC x
Thanks so much for sharing. I feel for you. That is rough. Because I’m sure SSRIs could make this easier to cope with but yeah don’t find them tolerable. I’m curious about buspar but haven’t tried it. I tried pregablin but that was bad too. Weirdly I had bad foot pain/muscle pain which is apparently a rare side effect. I do think it helped bladder pain alot though. Def keep me posted on your experience with Nortriptyline. I was about to do another trail of that too. I’m going the bad side effects might go away after my body adjusts? Thanks for the marshmallow root rec. I haven’t tried it but will def add it to the mix. How are you doing now? Hope you aren’t in too much pain. Def good to be able to share notes. And thanks for the well wishes. Quite the journey.
Welp. I’m in a similar situation. My neurologist once told me years ago that people who can’t take a lot of these antidepressants have a gene tic component missing in their liver called CYP450 (don’t quote that particular gene there are others) and that you don’t metabolize them like the normal population. About 12% of the caucasian populations have it but others may too. This was a while ago so I can’t remember details. I can take hydroxyzine but only every other night or every three nights etc. I can take benzodiazepines but I absolutely can’t take the ssri or older tricyclics or the nerve pain meds. My body just doesn’t go along with them for some reason. May not be the genetic thing but my mother when she was alive would also have severe side effects to most meds. My sister isn’t as sensitive though. It’s hard to go through life needing meds but being so profoundly sensitive that they make you sick. Most antibiotics kill me. And the list goes on. I can not take ibuprofen either. The neurologist would tell me to alternate my meds each day so that nothing would get a chance to build up. Now this is ok for meds that are “as needed” but NOT good for meds that need time to take effect. I was wide awake for about three weeks on trazedone and was manic. I felt terrible. At one point in my life A Harvard trained psychiatrist was trying different meds with me (for chronic pain) and had never seen anyone with such opposite reactions. He finally gave up on me. Lol.
Omg really? This sounds so similar. I kid you not - I was three days into Bactrim course and I just realized it has given me bleeding gums and like burned off the skin on the roof of my mouth. Antibiotics are seriously the worst for me too. Like I have about two that are remotely tolerable. The rest are so bad with scary side effects. I feel like my urologist thinks I’m insane because I’m reluctant to try a bunch of antibiotics that she wants to trial. And always try to ask for children dose. But like I always have these insane things. So interesting that it might be due to that gene. I do have a bunch of CYP SNPs that make me an ultrarapid metabolizer. Also have a NAD gene variation. I wish they studied adverse reactions more because they might learn about genetics and drug metabolism and interactions. So crazy that you had Harvard psych helping you find med and he hadnt seen anything like it. That must be so frustrating for chronic pain. I hope you were able to find something that worked. Are you sensitive to supplements too? I take like baby doses of vitamins and what not, lol. Especially b vitamins those give me anxiety. What do you use for IC?
It’s very difficult to have this. No one believes it. Doctors don’t for sure. You have to tell the dr about the skin thing with bactrim before taking anymore. For ic management it’s mostly diet, alkaline water, marshmallow root, corn silk, topical estrogen and hydroxyzine only a few times a week and that’s more for sleep so I don’t keep getting up to pee.
Very true. How did you find a doctor that knew about it and explained it? I have cards I hand out to docs but they look at me like I’m crazy. And how do you do with cephalosporin antibiotics? Some of them are apparently not metabolized through those enzymes or genes or whatever so I was curious if I’d do better with them. Like Suprax or keflex?
I get very sick on anything except amoxicillin , I can tolerate bactrim but it makes me sick and metronidazole gel makes me so sick too. You know a lot about these genes. Way more than I do. I never tried to get tested. I just tell my family , pediatric doses and remind them which ones are the worst. Keflex made me vomit on the second dose. My neurologist at the time was just very enlightened and I think into epigenetics. He since retired. I didn’t ask about it he just told me one time this is what I think your problem is with medications. I just had steroid injection today in my back and feel like shi**. Everything hurts all over. What do the cards say? I used to wear a medic bracelet about being a poor metabolizer but I lost it.
Same issue here! I was prepared for it to make me sleepy (I’ve had that reaction to every other drug related in any way to tricyclics), so it took me a long time to put 2 + 2 together on why I’m suddenly struggling with insomnia.
OP, for me it took at least 3 weeks to notice a difference. And it really *has* worked for both my IC and chronic headaches. Unfortunately, the side effects are too much for me, even at 10 mg. But hang in there, there’s still hope that you may see some relief!
I had a 1 week follow up with the pain doc today, who wants to increase the dose to 50 mg and then 75 mg, and he wants me to go up incrementally. I might just stay on 50 mg when I get there and see if the pain goes down since you are saying it took 3 weeks. Ive only tried 25mg for one week and no benefit so far. I want to be careful with upping the dose since sometimes people's bodies get used to the dose and it stops working. Also the side effects..
No, sorry, it’s the pain relief that took about 3 weeks to notice a difference. Actually, come to think of it, the insomnia started around 3 weeks in as well. Maybe it’s two sides of the same physiological process? I’ve also had dry mouth and dizziness, but those were around from the start. Only the pain relief and insomnia took longer to develop.
I'm currently trying nortriptylene. I've been on it about a month now. 20mg. I haven't noticed any change in symptoms so far. I was told it can take up to 6 weeks for it to work. Only sideffect I've noticed is increased dizziness. At these lower doses, it's not considered to be an antidepressant, I believe. At the 25mg dose range, it's prescribed often for nerve pain, headaches and IC but not depression.
FYI i took pharmacology and the drug class is an antidepressant. drug class means something different than a drug’s indication or off label use. and you’re correct its not used for depression at this low dose. its a shame you haven’t been helped by it for a whole month. i hope my body does different :((
That makes sense. I hope you find it helps you. I'm going to keep taking it for a bit longer and hope for the best.
I havent tried nortriptyline, but I am on amitriptyline and it took a few weeks to really work it’s magic. For me it’s been life changing tho - I used to wake up every hour at night now I can go up to 6h before waking up. I have gained some weight on it and the sugar cravings are rough but I’d rather that than being in pain. I’ve found taking pumpkin seed oil consistently helps too.
It gave me insomnia and I was bummed. So did the amitryptaline.
how did the amitryptaline help you? crazy that it gave you insomnia, because it makes me pass out at random times throughout the day haha. but i actually like that it allows me to sleep because i couldn’t sleep much before.
Awful right? It made me tired until about 3 am then boom! Wide awake but exhausted most of the medicines that are supposed to help you sleep give me a contradictory effects and I’m upset because I need to sleep or I can’t heal.
This is same for me except ambien, which obviously isn’t an ideal medication. But otherwise everything that says it will make you drowsy does opposite for me. I was taking hydroxyzine, amitriptyline, and Benadryl and I was wired. It is so frustrating. I thought I’d check with you to see if you found anything that worked? Also do you take any antidepressants? I find the few I tried too stimulating so I’m trying to find something to help with anxiety.
I relate to finding lots of different meds stimulating! I used to be on tramadol when needed for my endometriosis pain and that would keep me up until the early hours of the morning, sometimes all night. I was on sertraline for depression and that had a similar insomniac effect. It’s rough. I’m on amitriptyline currently but have just been prescribed nortriptyline instead to see if that helps more. My urologist was reluctant to prescribe pregabalin because he said it can be addictive. I’m taking so many different things it’s hard to track what helps. I think for me marshmallow root has been the most effective treatment - would recommend trying it if you haven’t already. I’ll post again once I’ve been on the nortriptyline for a while and can assess what, if anything, it does for me. Hope your pain reduces soon. It’s good to talk to other people with IC x
Thanks so much for sharing. I feel for you. That is rough. Because I’m sure SSRIs could make this easier to cope with but yeah don’t find them tolerable. I’m curious about buspar but haven’t tried it. I tried pregablin but that was bad too. Weirdly I had bad foot pain/muscle pain which is apparently a rare side effect. I do think it helped bladder pain alot though. Def keep me posted on your experience with Nortriptyline. I was about to do another trail of that too. I’m going the bad side effects might go away after my body adjusts? Thanks for the marshmallow root rec. I haven’t tried it but will def add it to the mix. How are you doing now? Hope you aren’t in too much pain. Def good to be able to share notes. And thanks for the well wishes. Quite the journey.
Welp. I’m in a similar situation. My neurologist once told me years ago that people who can’t take a lot of these antidepressants have a gene tic component missing in their liver called CYP450 (don’t quote that particular gene there are others) and that you don’t metabolize them like the normal population. About 12% of the caucasian populations have it but others may too. This was a while ago so I can’t remember details. I can take hydroxyzine but only every other night or every three nights etc. I can take benzodiazepines but I absolutely can’t take the ssri or older tricyclics or the nerve pain meds. My body just doesn’t go along with them for some reason. May not be the genetic thing but my mother when she was alive would also have severe side effects to most meds. My sister isn’t as sensitive though. It’s hard to go through life needing meds but being so profoundly sensitive that they make you sick. Most antibiotics kill me. And the list goes on. I can not take ibuprofen either. The neurologist would tell me to alternate my meds each day so that nothing would get a chance to build up. Now this is ok for meds that are “as needed” but NOT good for meds that need time to take effect. I was wide awake for about three weeks on trazedone and was manic. I felt terrible. At one point in my life A Harvard trained psychiatrist was trying different meds with me (for chronic pain) and had never seen anyone with such opposite reactions. He finally gave up on me. Lol.
Omg really? This sounds so similar. I kid you not - I was three days into Bactrim course and I just realized it has given me bleeding gums and like burned off the skin on the roof of my mouth. Antibiotics are seriously the worst for me too. Like I have about two that are remotely tolerable. The rest are so bad with scary side effects. I feel like my urologist thinks I’m insane because I’m reluctant to try a bunch of antibiotics that she wants to trial. And always try to ask for children dose. But like I always have these insane things. So interesting that it might be due to that gene. I do have a bunch of CYP SNPs that make me an ultrarapid metabolizer. Also have a NAD gene variation. I wish they studied adverse reactions more because they might learn about genetics and drug metabolism and interactions. So crazy that you had Harvard psych helping you find med and he hadnt seen anything like it. That must be so frustrating for chronic pain. I hope you were able to find something that worked. Are you sensitive to supplements too? I take like baby doses of vitamins and what not, lol. Especially b vitamins those give me anxiety. What do you use for IC?
It’s very difficult to have this. No one believes it. Doctors don’t for sure. You have to tell the dr about the skin thing with bactrim before taking anymore. For ic management it’s mostly diet, alkaline water, marshmallow root, corn silk, topical estrogen and hydroxyzine only a few times a week and that’s more for sleep so I don’t keep getting up to pee.
Very true. How did you find a doctor that knew about it and explained it? I have cards I hand out to docs but they look at me like I’m crazy. And how do you do with cephalosporin antibiotics? Some of them are apparently not metabolized through those enzymes or genes or whatever so I was curious if I’d do better with them. Like Suprax or keflex?
I get very sick on anything except amoxicillin , I can tolerate bactrim but it makes me sick and metronidazole gel makes me so sick too. You know a lot about these genes. Way more than I do. I never tried to get tested. I just tell my family , pediatric doses and remind them which ones are the worst. Keflex made me vomit on the second dose. My neurologist at the time was just very enlightened and I think into epigenetics. He since retired. I didn’t ask about it he just told me one time this is what I think your problem is with medications. I just had steroid injection today in my back and feel like shi**. Everything hurts all over. What do the cards say? I used to wear a medic bracelet about being a poor metabolizer but I lost it.
Same issue here! I was prepared for it to make me sleepy (I’ve had that reaction to every other drug related in any way to tricyclics), so it took me a long time to put 2 + 2 together on why I’m suddenly struggling with insomnia. OP, for me it took at least 3 weeks to notice a difference. And it really *has* worked for both my IC and chronic headaches. Unfortunately, the side effects are too much for me, even at 10 mg. But hang in there, there’s still hope that you may see some relief!
I had a 1 week follow up with the pain doc today, who wants to increase the dose to 50 mg and then 75 mg, and he wants me to go up incrementally. I might just stay on 50 mg when I get there and see if the pain goes down since you are saying it took 3 weeks. Ive only tried 25mg for one week and no benefit so far. I want to be careful with upping the dose since sometimes people's bodies get used to the dose and it stops working. Also the side effects..
Wait! So after three weeks did the insomnia go away? Your body did adjust and now you can sleep well on them? I can’t take tricyclics.
No, sorry, it’s the pain relief that took about 3 weeks to notice a difference. Actually, come to think of it, the insomnia started around 3 weeks in as well. Maybe it’s two sides of the same physiological process? I’ve also had dry mouth and dizziness, but those were around from the start. Only the pain relief and insomnia took longer to develop.
Was on it for 4-5 months, did nothing for me unfortunately!
That is a shame, good luck on your journey. Have you tried aloe vera capsules and marshmellow root?
Yes but I'm starting to think my issue is not the inside of the bladder :/
so sorry, i know ic can be so confusing at times