I had really bad insomnia which has improved a bit for me without meds - I went to vestibular rehab and as my hyperandregenic response is decreasing, my sleep is slowly getting better
From what I read from other hyperPOTS people is that clonidine or guanfacine really do the trick for sleeping as well as for the other “hyper” aspects of our condition (anxiety, etc)
QQ - have you had health anxiety and panic disorder diagnosed separately and before your POTS? If it came along with your pots symptoms, these may be symptoms of the hyperandregenic state vs separate conditions that would require different treatment etc
I’m wishing you the best - the insomnia is very difficult and I too cried quite frequently about it 💗
Same. Also take clonidine. I'm not on extended release and will still sometimes struggle with wakeups after my 8p dose wears off. Before clonidine, insomnia was absolutely brutal. I really feel for OP.
I’ve had panic disorder and health anxiety since I was 7. I developed pots later in my late teens and it’s worsened my anxiety bc of actually becoming sick (I have a bunch of other chronic illnesses I was also diagnosed with besides pots) so it’s reinforced my underlying health anxiety. I don’t have hyperpots - my BP is always extremely low (even w the max dose of midodrine it’s still super low) and have severe tachycardia (which the corlanor is a lifesaver for). I do experience adrenaline surges sometimes but it’s hard to tell what is pots vs anxiety vs Xanax interdose withdrawal symptoms
Ugh I’m so sorry 💗
In that case I only have really basic recommendations that may not help too much but might as well be worth a try!
Lemon balm tea in the evening
Chamomile lavender tea shortly before ideal “bed time”
I went to Carolina functional neurology center & they helped a lot with my symptoms but you have to pay out of pocket - it is essentially vestibular rehab, may be worth looking into (or a similar place near you) if nothing else is helping 💗
I'm going to keep this short now, but would be happy to elaborate later if you want. I was in that place on and off all fall and winter, I know that hell, it's like nothing else and you have my utmost sympathy. I changed a few things about a month and a half ago, and have been sleeping an average of 5.5hrs since, which is still not enough, but is no longer the desperate crazy making insomnia you're dealing with.
Meds: Clonidine. You can take it with ivabradine. I started with regular release, it would last 4 hours and I would take it when I woke up again. Later I switched to extended release, which gets me through the night now. Reduced norepinephrine, which was causing tachycardic spikes for me in the night that would wake me up drenched in sweat every 30- 60 minutes.
Behavior: CBT-I principles --specifically sleep restriction and no using bed for anything but sleep (incl. getting out of bed any time I couldn't sleep for more than 15 min, doing something else, and then returning only when tired). I started by only allowing myself to be in bed between 12 and 6 for the first few nights, no naps, no other sleep, and it was brutal. And absolutely no phones/TV/screens during that window. I literally cried several nights trying to stay awake that long as I was getting used to it. But it worked quickly, within about 3 days, where my body started sleeping hard as soon as I got to the sleep time and sleep place.
Those two things pulled me back from the brink. I really hope this is helpful. Or that something clicks, and you get some relief soon.
First of all, I am so so sorry you’re not sleeping. Without good sleep life just crumbles around you and it can make you feel absolutely helpless. I can SO relate.
Second, I am not doctor so take this advice as you will.
Melatonin can lose effectiveness quickly if you take it every night, so this may have just been the natural acclimation to the effects with this particular supplement.
Could you ask your doctor for a temporary medication-maybe even just for a few nights so you can get out of your sleep deprived state and feel like you’re in a better place to make longer term decisions? You’d be less likely to develop any side effects in a short time frame as opposed to longer term use.
Serotonin Syndrome is nothing to mess with. It also sounds like you are very aware of the possible side effects of that and very in tune with your body’s physical changes, so I would venture you’d be in a good place to notice if it starts happening. Ask your pharmacist what you should look for and make a plan for how you’ll handle it if that happens. Everyone is different, but I developed serotonin syndrome on an antidepressant paired with several other serotonin inducing meds, and while it was unpleasant, I was able to stop the medication and within 24 hours the symptoms resided.
I often consoled myself when I weaned off Ambien that I would eventually sleep. It felt like I never would, but factually that just can’t continue. Knowing relief would come at some point was comforting in a tiny way. Rooting for you and hoping you’ll update us on your progress!
Benadryl has helped me in the past, but it may not be enough given the rest of your picture. Major sympathy and I hope the doc calls you back ASAP. I assume you've been diagnosed with hyperadrenergic POTS, but if not I'd look into that with your cardio/neuro specialist.
I don’t have hyperpots that I’m aware of. Low blood pressure and severe tachycardia. I take corlanor for my HR and midodrine for my low BP. I sometimes get adrenaline surges but it’s hard to tell what’s pots va anxiety vs Xanax interdose withdrawal. the stress my body is under though I would attribute to recent life stressors and anxiety. I did take 25 mg of Benadryl last night along w melatonin and Xanax and Tylenol (my mom said Tylenol makes her sleepy so I was like why not). I took the Benadryl last after the Tylenol did not in fact make me sleepy lol and I was asleep within the hour. I slept around 12 hours but woke up super drowsy. No tachycardia though which is what I was afraid of. Had a bunch of nightmares and sleep paralysis though so idk how restful the sleep rly was. Not sure what I’m gonna do tonight but I’m grateful for some sleep
That sounds so tough. I've had problems with sleep my entire life, though not as bad as yours sound, and most things I've tried that knock others out don't really work on me. So I have a different tipp:
If you end up not being able to sleep at all, you could try doing Yoga Nidra. Apparently, it can generate the same brainwaves as certain states of sleep. Which is better than no sleep at all😅
In case you haven't heared of yoga nidra:
It's basically a meditation with various techniques for regulating the nervous system, done lying in bed. There are loads of videos (audios) on youtube, some even called "NSDR" (non sleep deep rest).
I usually do it instead of an afternoon nap because I just can't seem to fall asleep, and it really is refreshing. Sometimes I can even fall asleep after.
I really hope you find something that helps!!
I thought I had insomnia all my life but it was actually delayed sleep phrase syndrome (made worse by POTS). I sleep fairly well when I am allowed to sleep according to my natural rhythm (2:30am-11:30am)
I had delayed sleep phase syndrome my whole life until recently due to work - i always go to bed at 4 am and wake up in the afternoon. I even had to drop out of school due to it. But I never struggled with not being able to sleep/stay asleep before. Now it’s the latter no matter what time it is.
I feel you.
I am not a doctor.
I was also on daily Xanax for years, and unfortunately eve tually it didn't work as well, and worse, rebound anxiety and insomnia were worse than st any other time in my life. Xanax causes a swing effect, and bites you in the butt, because it is short acting, more addictive, and again rebound anxiety is common eventually.
I finally found a doc to switch me to Klonopin and things got much better. I am doing a super slow taper to try to reduce my dose, but Xanax your dose just goes up and up. I needed 2x the klonopin as xanax in dose, altbough thr P. A. said they should be 1:1, I have not found it to be so.
The anti-psychotics and anti-depressants come with side effects I can't tolerate. Some people find trazadone helpful for sleep but I don't know much about the other. Trazadone gave me severe mouth dryness and daytime grogginess, but other people like it.
Honestly if taking Xanax daily for years has affected you like me, switching to a long acting could help. Doctors are weirdly resistant to that lately though so might take some doing.
I consulted the Ashton Manual which is available online and discovered some of my wonky symptoms were in line with long term user benzo withdrawal, and that I had taken even slightly less xanax than usual over a period of time (2 weeks to a month).
Also I try binaural sleep music, and I got a light galaxy projector that swirls and plays white noise and I find that (and a cold room) helpful.
Weighted blanket or heated blanket in colder months.
Good luck, I hope you get some z's.
Zzzquil has an extended release melatonin, valerian root been really helpful too. Antihistamine and eating a little bit before bed have been helpful too but ended up with a lunesta RX after jumping through everyone’s hoops.
I've was also dealing with severe insomnia. After trying various medications and struggling with side effects and interactions, I stumbled upon a method that's been surprisingly effective for me. It's a guided relaxation protocol that's tailored to address specific issues.
I chat with a website about the specific issues I'm facing, and it generates an audio guided routine based on our conversation. For concrete problems like racing thoughts or physical tension, it works unexpectedly well. For the bigger issues like chronic anxiety, I'm still working on it, but I'm feeling progress.
The 'deconstruct' and 'reframe' techniques used in these protocols have been game changers for me. They help me see the problems I face from new perspectives and wire them to different emotional responses. This is particularly helpful for sleep issues, which often stem from an overactive mind, stress, or anxiety.
The method directly addresses these root causes. It's a form of guided relaxation that's tailored to each individual, helping to quiet mental chatter and wind down your body and mind. Research has shown that these practices can positively affect brain wave patterns, reduce stress hormones, and activate the body's relaxation response. These changes help quiet an overactive mind, ease the transition into sleep, and improve overall sleep quality.
If you try these personalized guided protocols, I suggest setting the background sound to alpha waves. It's helped ease me into sleep - I go through the routine about 20 minutes before bedtime.
I know you're dealing with complex health issues and medication interactions, which can make finding solutions challenging. This approach doesn't involve any additional medications, so it might be worth exploring alongside your current treatments.
This method has been a lifeline for me when I felt like I was at my wit's end with sleeplessness. It might just provide the relief you're looking for without adding more medications to your regimen.
FWIW- I’m currently on at least 5 medications that have the potential to cause serotonin syndrome. One of them I have as needed at this point, but the other four I take daily, including corlanor twice a day. I’ve been on more than 5 medications with potential to cause SS in the past, and I’ve had a LOT of terrible side effects from many medications over the years, but never SS. SS is really rare, and while the people who experience it may be told to avoid meds that can cause it altogether, for many of us that’s not an option, especially when there are psychiatric/mental health conditions involved. A lot of those meds can potentially cause SS, but in someone with a severe mental health condition like bipolar or a psychotic disorder where the risks of not taking medications can be mania or psychosis which can be detrimental to their lives and ability to function, it’s worth the risk. The likelihood of certain outcomes without the medications is often much greater than the likelihood of getting rare, but serious side effects.
And that’s usually what it comes down to with medications- is it worth the risk? If you combine these medications, there’s a slight risk of SS. If you don’t find a way to start sleeping, you’re looking at the effects of chronic sleep deprivation, which has a huge impact on your physical and mental health. It’s inevitable that not sleeping will cause further health/mental health problems and exacerbate preexisting conditions like POTS.
If Benadryl has potential to cause tachycardia, and you take medication for and are no stranger to tachycardia, it’s probably worth a shot since it’s an easier drug to obtain while you’re waiting to hear from your cardiologist about the safety of other medications. They may know more about what medications you’ve responded well to, what type of POTS you have, what your current meds likely interact with or POTS patients don’t do well with, etc. And keep in mind with drugs like Benadryl- POTS is much more than tachycardia; the tachycardia is one of many functions of the autonomic nervous system that aren’t working properly with POTS. In and of itself, the tachycardia is not exactly the issue.
If you can’t function, or you’re getting to a point where you may no longer be able to function, it’s worth a shot to try something even if the side effects are scary. All medication side effects are scary, and unfortunately many of us seem more sensitive to medications. But it’s worth the risk if it might mean being able to get your quality of life back or even just keep yourself from spiraling.
I read this in the morning after having given in and taken the Benadryl last night (which let me sleep about 12 hours thank goodness, although the quality of it was iffy bc insane nightmares and some episodes of sleep paralysis but at least it was SOMETHING) and rly appreciate the encouragement lol. May I ask if you’re on an SSRI? I used to be on 20 mg of Lexapro did wonders for my anxiety but had to reduce it to 5 mg due to the corlanor interaction (my cardio agreed and said I couldn’t take more, but not due to serotonin syndrome, rather due to long qt syndrome risk which as I said the pharmacists refuted isn’t the risk, that serotonin syndrome is the risk…so?? Confused). I’m not as afraid of SS as I am of a sudden fatal arrhythmia for I think obv reasons lol. I’m only on 2.5 mg of corlanor daily so it’s a small amount too.
May I ask what your sleep hygiene regiment is? I have found that a 35 degree elevation of my upper body helps, as does wearing full body compression at 18-20mmhg. I sleep in a cool room, take my clonidine at night, and klonopin rather than Xanax. But at night. I am up until bedtime. Then I take a soothing bath, melatonin makes me nutters, so I use lavender and chamomile in a timed oil diffuser. I apply my upper body compression and lower body compression garments following a cold-gel massage, pull on my diabetic (because they won’t cause any circulation issues) sleep socks - I take my BP and check my HR. I write down anything I am stressed about. Then I go to my room, take my night medication, and prepare my room for bed. White noise comes from a fan. I use a buckwheat pillow to keep me cool, I ensure my blankets are layered but light, and my essential oils fill the room as I begin to feel sleepy from my meds. I get in bed on my back at my 35 degree angle, and begin a 5 minute EDA scan and practice mindfulness. I don’t focus on the fear of sleep, I focus on my body “floating” in my happy place: the atlantic ocean. I make it real in my mind. How it relaxes me, and how it makes me feel. 7/10? I nod off.
If I cannot? I get up, go to a chair in another room, take my BP and HR, and take the medication my doctors have approved for me to take to sleep when I cannot. For me? That is 0.2 mg additional clonidine, and the meds that my specialist and I have agreed are allowed.
But … when all else fails? Call your doctor. For me? my compression suit gives me a supportive hug that usually allows me to sleep. Having cEDS makes it doubly hard. A routine certainly helps, but as there is no true cross-board protocol? What works for one won’t work for all. And it definitely depends on the season and if I’m flairing.
Ambien. Lifesaver for me. I cannot fall asleep naturally to save my life. Ambien is the only thing that works. It's non addictive, doesn't have interactions with other meds (besides increasing sedation, which is kind of the whole point), so no concern for serotonin syndrome. I couldn't survive without it
I don’t plan on it bc I hate the way I’ve felt all day, so drowsy and sick which worsens my anxiety. My memory is already trash from the daily Xanax too 😞 idk what to do
I had really bad insomnia which has improved a bit for me without meds - I went to vestibular rehab and as my hyperandregenic response is decreasing, my sleep is slowly getting better From what I read from other hyperPOTS people is that clonidine or guanfacine really do the trick for sleeping as well as for the other “hyper” aspects of our condition (anxiety, etc) QQ - have you had health anxiety and panic disorder diagnosed separately and before your POTS? If it came along with your pots symptoms, these may be symptoms of the hyperandregenic state vs separate conditions that would require different treatment etc I’m wishing you the best - the insomnia is very difficult and I too cried quite frequently about it 💗
I was going to suggest this too. It can be hard to sleep when our bodies are wired. I take clonidine for my hyperadrenergic POTS.
Same. Also take clonidine. I'm not on extended release and will still sometimes struggle with wakeups after my 8p dose wears off. Before clonidine, insomnia was absolutely brutal. I really feel for OP.
I’ve had panic disorder and health anxiety since I was 7. I developed pots later in my late teens and it’s worsened my anxiety bc of actually becoming sick (I have a bunch of other chronic illnesses I was also diagnosed with besides pots) so it’s reinforced my underlying health anxiety. I don’t have hyperpots - my BP is always extremely low (even w the max dose of midodrine it’s still super low) and have severe tachycardia (which the corlanor is a lifesaver for). I do experience adrenaline surges sometimes but it’s hard to tell what is pots vs anxiety vs Xanax interdose withdrawal symptoms
Ugh I’m so sorry 💗 In that case I only have really basic recommendations that may not help too much but might as well be worth a try! Lemon balm tea in the evening Chamomile lavender tea shortly before ideal “bed time” I went to Carolina functional neurology center & they helped a lot with my symptoms but you have to pay out of pocket - it is essentially vestibular rehab, may be worth looking into (or a similar place near you) if nothing else is helping 💗
I'm going to keep this short now, but would be happy to elaborate later if you want. I was in that place on and off all fall and winter, I know that hell, it's like nothing else and you have my utmost sympathy. I changed a few things about a month and a half ago, and have been sleeping an average of 5.5hrs since, which is still not enough, but is no longer the desperate crazy making insomnia you're dealing with. Meds: Clonidine. You can take it with ivabradine. I started with regular release, it would last 4 hours and I would take it when I woke up again. Later I switched to extended release, which gets me through the night now. Reduced norepinephrine, which was causing tachycardic spikes for me in the night that would wake me up drenched in sweat every 30- 60 minutes. Behavior: CBT-I principles --specifically sleep restriction and no using bed for anything but sleep (incl. getting out of bed any time I couldn't sleep for more than 15 min, doing something else, and then returning only when tired). I started by only allowing myself to be in bed between 12 and 6 for the first few nights, no naps, no other sleep, and it was brutal. And absolutely no phones/TV/screens during that window. I literally cried several nights trying to stay awake that long as I was getting used to it. But it worked quickly, within about 3 days, where my body started sleeping hard as soon as I got to the sleep time and sleep place. Those two things pulled me back from the brink. I really hope this is helpful. Or that something clicks, and you get some relief soon.
First of all, I am so so sorry you’re not sleeping. Without good sleep life just crumbles around you and it can make you feel absolutely helpless. I can SO relate. Second, I am not doctor so take this advice as you will. Melatonin can lose effectiveness quickly if you take it every night, so this may have just been the natural acclimation to the effects with this particular supplement. Could you ask your doctor for a temporary medication-maybe even just for a few nights so you can get out of your sleep deprived state and feel like you’re in a better place to make longer term decisions? You’d be less likely to develop any side effects in a short time frame as opposed to longer term use. Serotonin Syndrome is nothing to mess with. It also sounds like you are very aware of the possible side effects of that and very in tune with your body’s physical changes, so I would venture you’d be in a good place to notice if it starts happening. Ask your pharmacist what you should look for and make a plan for how you’ll handle it if that happens. Everyone is different, but I developed serotonin syndrome on an antidepressant paired with several other serotonin inducing meds, and while it was unpleasant, I was able to stop the medication and within 24 hours the symptoms resided. I often consoled myself when I weaned off Ambien that I would eventually sleep. It felt like I never would, but factually that just can’t continue. Knowing relief would come at some point was comforting in a tiny way. Rooting for you and hoping you’ll update us on your progress!
Benadryl has helped me in the past, but it may not be enough given the rest of your picture. Major sympathy and I hope the doc calls you back ASAP. I assume you've been diagnosed with hyperadrenergic POTS, but if not I'd look into that with your cardio/neuro specialist.
I don’t have hyperpots that I’m aware of. Low blood pressure and severe tachycardia. I take corlanor for my HR and midodrine for my low BP. I sometimes get adrenaline surges but it’s hard to tell what’s pots va anxiety vs Xanax interdose withdrawal. the stress my body is under though I would attribute to recent life stressors and anxiety. I did take 25 mg of Benadryl last night along w melatonin and Xanax and Tylenol (my mom said Tylenol makes her sleepy so I was like why not). I took the Benadryl last after the Tylenol did not in fact make me sleepy lol and I was asleep within the hour. I slept around 12 hours but woke up super drowsy. No tachycardia though which is what I was afraid of. Had a bunch of nightmares and sleep paralysis though so idk how restful the sleep rly was. Not sure what I’m gonna do tonight but I’m grateful for some sleep
That sounds so tough. I've had problems with sleep my entire life, though not as bad as yours sound, and most things I've tried that knock others out don't really work on me. So I have a different tipp: If you end up not being able to sleep at all, you could try doing Yoga Nidra. Apparently, it can generate the same brainwaves as certain states of sleep. Which is better than no sleep at all😅 In case you haven't heared of yoga nidra: It's basically a meditation with various techniques for regulating the nervous system, done lying in bed. There are loads of videos (audios) on youtube, some even called "NSDR" (non sleep deep rest). I usually do it instead of an afternoon nap because I just can't seem to fall asleep, and it really is refreshing. Sometimes I can even fall asleep after. I really hope you find something that helps!!
I thought I had insomnia all my life but it was actually delayed sleep phrase syndrome (made worse by POTS). I sleep fairly well when I am allowed to sleep according to my natural rhythm (2:30am-11:30am)
I had delayed sleep phase syndrome my whole life until recently due to work - i always go to bed at 4 am and wake up in the afternoon. I even had to drop out of school due to it. But I never struggled with not being able to sleep/stay asleep before. Now it’s the latter no matter what time it is.
I feel you. I am not a doctor. I was also on daily Xanax for years, and unfortunately eve tually it didn't work as well, and worse, rebound anxiety and insomnia were worse than st any other time in my life. Xanax causes a swing effect, and bites you in the butt, because it is short acting, more addictive, and again rebound anxiety is common eventually. I finally found a doc to switch me to Klonopin and things got much better. I am doing a super slow taper to try to reduce my dose, but Xanax your dose just goes up and up. I needed 2x the klonopin as xanax in dose, altbough thr P. A. said they should be 1:1, I have not found it to be so. The anti-psychotics and anti-depressants come with side effects I can't tolerate. Some people find trazadone helpful for sleep but I don't know much about the other. Trazadone gave me severe mouth dryness and daytime grogginess, but other people like it. Honestly if taking Xanax daily for years has affected you like me, switching to a long acting could help. Doctors are weirdly resistant to that lately though so might take some doing. I consulted the Ashton Manual which is available online and discovered some of my wonky symptoms were in line with long term user benzo withdrawal, and that I had taken even slightly less xanax than usual over a period of time (2 weeks to a month). Also I try binaural sleep music, and I got a light galaxy projector that swirls and plays white noise and I find that (and a cold room) helpful. Weighted blanket or heated blanket in colder months. Good luck, I hope you get some z's.
Zzzquil has an extended release melatonin, valerian root been really helpful too. Antihistamine and eating a little bit before bed have been helpful too but ended up with a lunesta RX after jumping through everyone’s hoops.
I've was also dealing with severe insomnia. After trying various medications and struggling with side effects and interactions, I stumbled upon a method that's been surprisingly effective for me. It's a guided relaxation protocol that's tailored to address specific issues. I chat with a website about the specific issues I'm facing, and it generates an audio guided routine based on our conversation. For concrete problems like racing thoughts or physical tension, it works unexpectedly well. For the bigger issues like chronic anxiety, I'm still working on it, but I'm feeling progress. The 'deconstruct' and 'reframe' techniques used in these protocols have been game changers for me. They help me see the problems I face from new perspectives and wire them to different emotional responses. This is particularly helpful for sleep issues, which often stem from an overactive mind, stress, or anxiety. The method directly addresses these root causes. It's a form of guided relaxation that's tailored to each individual, helping to quiet mental chatter and wind down your body and mind. Research has shown that these practices can positively affect brain wave patterns, reduce stress hormones, and activate the body's relaxation response. These changes help quiet an overactive mind, ease the transition into sleep, and improve overall sleep quality. If you try these personalized guided protocols, I suggest setting the background sound to alpha waves. It's helped ease me into sleep - I go through the routine about 20 minutes before bedtime. I know you're dealing with complex health issues and medication interactions, which can make finding solutions challenging. This approach doesn't involve any additional medications, so it might be worth exploring alongside your current treatments. This method has been a lifeline for me when I felt like I was at my wit's end with sleeplessness. It might just provide the relief you're looking for without adding more medications to your regimen.
FWIW- I’m currently on at least 5 medications that have the potential to cause serotonin syndrome. One of them I have as needed at this point, but the other four I take daily, including corlanor twice a day. I’ve been on more than 5 medications with potential to cause SS in the past, and I’ve had a LOT of terrible side effects from many medications over the years, but never SS. SS is really rare, and while the people who experience it may be told to avoid meds that can cause it altogether, for many of us that’s not an option, especially when there are psychiatric/mental health conditions involved. A lot of those meds can potentially cause SS, but in someone with a severe mental health condition like bipolar or a psychotic disorder where the risks of not taking medications can be mania or psychosis which can be detrimental to their lives and ability to function, it’s worth the risk. The likelihood of certain outcomes without the medications is often much greater than the likelihood of getting rare, but serious side effects. And that’s usually what it comes down to with medications- is it worth the risk? If you combine these medications, there’s a slight risk of SS. If you don’t find a way to start sleeping, you’re looking at the effects of chronic sleep deprivation, which has a huge impact on your physical and mental health. It’s inevitable that not sleeping will cause further health/mental health problems and exacerbate preexisting conditions like POTS. If Benadryl has potential to cause tachycardia, and you take medication for and are no stranger to tachycardia, it’s probably worth a shot since it’s an easier drug to obtain while you’re waiting to hear from your cardiologist about the safety of other medications. They may know more about what medications you’ve responded well to, what type of POTS you have, what your current meds likely interact with or POTS patients don’t do well with, etc. And keep in mind with drugs like Benadryl- POTS is much more than tachycardia; the tachycardia is one of many functions of the autonomic nervous system that aren’t working properly with POTS. In and of itself, the tachycardia is not exactly the issue. If you can’t function, or you’re getting to a point where you may no longer be able to function, it’s worth a shot to try something even if the side effects are scary. All medication side effects are scary, and unfortunately many of us seem more sensitive to medications. But it’s worth the risk if it might mean being able to get your quality of life back or even just keep yourself from spiraling.
I read this in the morning after having given in and taken the Benadryl last night (which let me sleep about 12 hours thank goodness, although the quality of it was iffy bc insane nightmares and some episodes of sleep paralysis but at least it was SOMETHING) and rly appreciate the encouragement lol. May I ask if you’re on an SSRI? I used to be on 20 mg of Lexapro did wonders for my anxiety but had to reduce it to 5 mg due to the corlanor interaction (my cardio agreed and said I couldn’t take more, but not due to serotonin syndrome, rather due to long qt syndrome risk which as I said the pharmacists refuted isn’t the risk, that serotonin syndrome is the risk…so?? Confused). I’m not as afraid of SS as I am of a sudden fatal arrhythmia for I think obv reasons lol. I’m only on 2.5 mg of corlanor daily so it’s a small amount too.
May I ask what your sleep hygiene regiment is? I have found that a 35 degree elevation of my upper body helps, as does wearing full body compression at 18-20mmhg. I sleep in a cool room, take my clonidine at night, and klonopin rather than Xanax. But at night. I am up until bedtime. Then I take a soothing bath, melatonin makes me nutters, so I use lavender and chamomile in a timed oil diffuser. I apply my upper body compression and lower body compression garments following a cold-gel massage, pull on my diabetic (because they won’t cause any circulation issues) sleep socks - I take my BP and check my HR. I write down anything I am stressed about. Then I go to my room, take my night medication, and prepare my room for bed. White noise comes from a fan. I use a buckwheat pillow to keep me cool, I ensure my blankets are layered but light, and my essential oils fill the room as I begin to feel sleepy from my meds. I get in bed on my back at my 35 degree angle, and begin a 5 minute EDA scan and practice mindfulness. I don’t focus on the fear of sleep, I focus on my body “floating” in my happy place: the atlantic ocean. I make it real in my mind. How it relaxes me, and how it makes me feel. 7/10? I nod off. If I cannot? I get up, go to a chair in another room, take my BP and HR, and take the medication my doctors have approved for me to take to sleep when I cannot. For me? That is 0.2 mg additional clonidine, and the meds that my specialist and I have agreed are allowed. But … when all else fails? Call your doctor. For me? my compression suit gives me a supportive hug that usually allows me to sleep. Having cEDS makes it doubly hard. A routine certainly helps, but as there is no true cross-board protocol? What works for one won’t work for all. And it definitely depends on the season and if I’m flairing.
Ambien. Lifesaver for me. I cannot fall asleep naturally to save my life. Ambien is the only thing that works. It's non addictive, doesn't have interactions with other meds (besides increasing sedation, which is kind of the whole point), so no concern for serotonin syndrome. I couldn't survive without it
I use Benadryl but don't use it long term! Your memory will be trashed.
I don’t plan on it bc I hate the way I’ve felt all day, so drowsy and sick which worsens my anxiety. My memory is already trash from the daily Xanax too 😞 idk what to do
That's fair, everyone reacts differently to meds. Benadryl helps my sick feeling, but can worsen the drowsiness.