What dysautonomia medications can be taken at night to calm down adrenaline for sleep?

[Picklesquish]

On 11/30/2021 at 5:17 PM, RecipeForDisaster said:

Thanks! Hopefully they take me. My referring doctor checked for the mitochondrial problems already. Something bad is going on, that’s all we know. My left ventricle is dilated and I have scarring/inflammation in my heart now as well. I just keep getting worse, and it doesn’t really fit any particular disease (unless it’s sarcoidosis which we will check in January).

I have the exact heart issues. How are the checking for sarcoidosis?

[CallieAndToby]

Ever since I started taking midrodine, then myrbetriq with mestinon, then just myrbetriq in the morning, my sleep is so much worse. It never feels like I've slept and I'm having trouble just resting. The midrodine was preventing me from urinating so the pain would keep me awake. It seems like the only autonomic medication I can tolerate is a beta blocker. The vasoconstrictors also don't help me with being upright, I start going syncope within minutes. I'm so tired, sleepy, fatigued, I don't feel like moving much less traveling anywhere but my new neurologist is talking about referring me elsewhere. Sigh. I have the PET brain scan that was done at NYU when I was very young and the medical community hasn't been able to explain it other than the radiologist telling me, "it looks like an 85 year old with severe Alzheimer's" plus the cancer medication / immunosuppressant that lead me to this point and I continue to get worse, I have explained everything over and over and it feels like nobody is listening. With such sleep deprivation and cognitive impairment I have no idea how to proceed and I feel like I've done all I can. They recently added dayvigo to the mix of nightly meds and it didn't do anything except make me next day sedated. I have noticed that not only with myself but my family members we are all very sensitive to medication and have weird paradoxical reactions, I have had a lot of trouble with supplements and some vitamins as well. Does anyone have an underlying disease causing their autonomic dysfunction like something neurodegenerative, etc? 

[CallieAndToby]

19 hours ago, docpots said:

Amitriptyline does have some Norepinephrine re-uptake inhibition. So, in theory, you've got more NE circulating which could cause sympathetic surges/stimulation. Once I'm out of this relapse, I'm going to wean off the Elavil I'm on and see if that helps. It never helped me for sleep or migraines. It's supposed to block the parasympathetic side and used in conjunction with beta-blockers to block the sympathetic side. The only thing "working" for me right now to get a few hours of sleep is some low dose Ativan.

I took nortriptyline for years and it was very helpful for sleep and mood but haven't been on a tri-cyclic for some time. I'm starting to reconsider because amitriptyline is supposed to be really good for Interstitial cystitis / painful bladder syndrome but I just don't like the potential weight gain aspect of it. 

[RecipeForDisaster]

20 hours ago, Picklesquish said:

I have the exact heart issues. How are the checking for sarcoidosis?

First a cardiac PET scan in January, and then, if that looks suspicious, 6 myocardial biopsies. Ick. I had a little ventricular tachycardia on my latest 30 day monitor  I had not demonstrated that before.

[potsdo]

On 12/11/2021 at 11:05 AM, CallieAndToby22 said:

I took nortriptyline for years and it was very helpful for sleep and mood but haven't been on a tri-cyclic for some time. I'm starting to reconsider because amitriptyline is supposed to be really good for Interstitial cystitis / painful bladder syndrome but I just don't like the potential weight gain aspect of it. 

It made me hungry all the time. I gained weight on it. Exercise is supposed to help but, of course, what do you do when you're exercise intolerant?

[CallieAndToby]

9 hours ago, potsdo said:

It made me hungry all the time. I gained weight on it. Exercise is supposed to help but, of course, what do you do when you're exercise intolerant?

Yea I hear you! I am exercise intolerant as well. When I got sick I was a competitive athlete and then I developed severe post exertional malaise. I think nortriptyline made me hungry all of the time as well, I just remember not being able to sleep I was so hungry and waking up in the middle of the night starving. I think Zyprexa is the worst in terms of weight gain but it's great for sleep! I take a small dose of Seroquel now but it doesn't work quite as well as the olanzapine. 

[potsdo]

On 12/13/2021 at 9:15 PM, CallieAndToby22 said:

Yea I hear you! I am exercise intolerant as well. When I got sick I was a competitive athlete and then I developed severe post exertional malaise. I think nortriptyline made me hungry all of the time as well, I just remember not being able to sleep I was so hungry and waking up in the middle of the night starving. I think Zyprexa is the worst in terms of weight gain but it's great for sleep! I take a small dose of Seroquel now but it doesn't work quite as well as the olanzapine. 

I’m going to stop the Elavil. I don’t think it really helped. I went to the ER yesterday with chest pain. Luckily the Coronary CTA was completely negative so I’m sure the pain is coming from the sympathetic surges. Interestingly, the medical provider I saw knew quite a bit about Dysautonomias. Her suggestion for me was Klonopin. I’m going to speak to my PCP about it. It’s funny how things happen for a reason and how people are placed in your life at the right time.

[CallieAndToby]

18 hours ago, potsdo said:

I’m going to stop the Elavil. I don’t think it really helped. I went to the ER yesterday with chest pain. Luckily the Coronary CTA was completely negative so I’m sure the pain is coming from the sympathetic surges. Interestingly, the medical provider I saw knew quite a bit about Dysautonomias. Her suggestion for me was Klonopin. I’m going to speak to my PCP about it. It’s funny how things happen for a reason and how people are placed in your life at the right time.

Klonopin has been really good for me, one of the best. Good luck. 

[KelseyisPotsitive]

On 12/9/2021 at 6:38 PM, Picklesquish said:

I use 5mg long acting melatonin, L-theonine, valerian, magnesium, vitamin D, and low dose naltrexone. Take at bedtime and my sleep has greatly improved. All recommended by my doc. Also, Clonidine .1 for the adrenaline rushes. I have seen good results,

 

[KelseyisPotsitive]

Thank you for sharing this cocktail on non-scary meds I already have in my cabinet.

[CallieAndToby]

17 hours ago, KelseyisPotsitive said:

Thank you for sharing this cocktail on non-scary meds I already have in my cabinet.

Low dose naltrexone is known for causing insomnia, great medication but neither I nor my friends could tolerate it because of the sleep issues it causes. Just thought I'd mention that's a major side effect. Although I've met on person who said it helped them sleep. 

Vitamin D also seems to be activating and energizing for most people, that is something I take in the morning. 

Edited January 30, 2022 by CallieAndToby

[CallieAndToby]

I'm experiencing the worst insomnia of my life for the past 3 weeks. No changes are being made to my medications even though they are now activating me at night. It was confirmed I do have Myalgic Encephalomyelitis but that was diagnosed 15 years ago by Dr. Klimas and Dr. Lapp; most patients in the ME community have extreme trouble sleeping but especially non restorative sleep. I tried medical marijuana in RSO oil form and indica gummies separately but both made me extremely wired and agitated which is the opposite of what it's supposed to do but both marijuana and CBD increase neurotransmitters in the brain and that hasn't fully been studied or understood. I'd like to take something that doesn't affect neurotransmitters because I'm so activated. Has anybody had luck with an actual sleep medicine specialist? I saw some pulmonologist sleep specialists but they are looking at everything from a sleep apnea stand point. 

[RecipeForDisaster]

22 minutes ago, CallieAndToby said:

I'm experiencing the worst insomnia of my life for the past 3 weeks. No changes are being made to my medications even though they are now activating me at night. It was confirmed I do have Myalgic Encephalomyelitis but that was diagnosed 15 years ago by Dr. Klimas and Dr. Lapp; most patients in the ME community have extreme trouble sleeping but especially non restorative sleep. I tried medical marijuana in RSO oil form and indica gummies separately but both made me extremely wired and agitated which is the opposite of what it's supposed to do but both marijuana and CBD increase neurotransmitters in the brain and that hasn't fully been studied or understood. I'd like to take something that doesn't affect neurotransmitters because I'm so activated. Has anybody had luck with an actual sleep medicine specialist? I saw some pulmonologist sleep specialists but they are looking at everything from a sleep apnea stand point. 

I’m in a similar boat and have an appt with a pulmonary sleep specialist. I do have sleep apnea, so I hope they won't focus on that - it has nothing to do with not being able to sleep. How do they diagnose ME? I see my neurologist on Tuesday. 

[RecipeForDisaster]

1 hour ago, CallieAndToby said:

Low dose naltrexone is known for causing insomnia, great medication but neither I nor my friends could tolerate it because of the sleep issues it causes. Just thought I'd mention that's a major side effect. Although I've met on person who said it helped them sleep. 

Vitamin D also seems to be activating and energizing for most people, that is something I take in the morning. 

I had to change my LDN to be taken in the morning, because it kept me up, too. I  have read the same thing about vitamin D - something about inhibiting melatonin. I take that and B12 in the morning. I eventually stopped LDN after a couple of years, because it wasn’t helping me. It sounds miraculous for many people.

[yogini]

Have you measured your blood pressure at night?   Often the heart is beating too fast to maintain blood pressure.  For me I couldn’t fall asleep when my blood pressure was too low.  Drinking a large cup of broth followed by several glasses of water right before sleep helped.  

[RecipeForDisaster]

It’s always low, like 72/30 at worst. I’m on a beta blocker, actually one at night and a different one in the morning. I drink salted water or broth all day… 15gm of salt and 4L liquid each day. It doesn’t get me to sleep - my heart is pounding hard even when the rate is controlled with my max dose of beta blocker. I’m also nauseous many times, and have air hunger.

[yogini]

On 1/30/2022 at 5:03 AM, CallieAndToby said:

I'm experiencing the worst insomnia of my life for the past 3 weeks. No changes are being made to my medications even though they are now activating me at night. It was confirmed I do have Myalgic Encephalomyelitis but that was diagnosed 15 years ago by Dr. Klimas and Dr. Lapp; most patients in the ME community have extreme trouble sleeping but especially non restorative sleep. I tried medical marijuana in RSO oil form and indica gummies separately but both made me extremely wired and agitated which is the opposite of what it's supposed to do but both marijuana and CBD increase neurotransmitters in the brain and that hasn't fully been studied or understood. I'd like to take something that doesn't affect neurotransmitters because I'm so activated. Has anybody had luck with an actual sleep medicine specialist? I saw some pulmonologist sleep specialists but they are looking at everything from a sleep apnea stand point. 

Sorry just seeing this.  I would definitely see a sleep specialist as they can best get to the bottom of the issue and they will know a whole range of treatments you many not.  It may also feel like adrenaline is keeping you awake but it might actually be something else 

[CallieAndToby]

On 1/30/2022 at 7:32 AM, RecipeForDisaster said:

I had to change my LDN to be taken in the morning, because it kept me up, too. I  have read the same thing about vitamin D - something about inhibiting melatonin. I take that and B12 in the morning. I eventually stopped LDN after a couple of years, because it wasn’t helping me. It sounds miraculous for many people.

The LDN was making me tired and sick but also insomnia so I couldn't tolerate it like most things. It is known for causing insomnia so I just wanted to mention that. 

 

On 1/31/2022 at 7:12 PM, yogini said:

Sorry just seeing this.  I would definitely see a sleep specialist as they can best get to the bottom of the issue and they will know a whole range of treatments you many not.  It may also feel like adrenaline is keeping you awake but it might actually be something else 

I have seen sleep specialists many years ago but I've tried everything including xyrem. My sleep study in my early 20's showed constant alpha intrusions and really high heart rate in my sleep which lead to dysautonomia diagnosis and beta blocker (that did resolve heart rate) but they didn't have any other advice. It never feels like I've slept. CBD gummies were really working for me for about a year and that would give me a deep sleep but they suddenly quit working. I'm also drugged and over sedated all the time. My head also hurts terribly from the lack of sleep. I will say that they won't give me anything for pain and people have what is called "painsomnia" but they have taken pain meds from everyone and I have very severe chronic pain all over. Thanks for advice. 

[DanteMccoy]

I understand that this thread is from a couple of years ago, but the struggle with insomnia due to dysautonomia medications can persist. It's great to see that you've explored different options, including LDN and CBD gummies.Considering the passage of time, you might want to revisit your approach to managing insomnia. CBD Capsules can be a worthwhile option to try, and it's always a good idea to discuss any new treatments with your healthcare provider to ensure they align with your current health status and medication regimen.I hope you've found effective ways to improve your sleep and overall well-being since the thread started.

[MaineDoug]

Sleep can be a challenge. Meds help me, but the best sleep aid I have are in this app named “insight timer”. Don’t let the name fool you, the site has meditation timers but oh so much more! My favorites are box breathing, and sleep stories. The stories are probably great, don’t really know, because I’m asleep in 2 minutes! 😂

This is my go to place for help. I always feel better! 

Sweet dreams!

[oscarpeters]

When it comes to calming the sympathetic nervous system for better sleep with dysautonomia, it's worth having a chat with your doc. They might suggest options like low-dose Clonidine or even Mestinon. However, the timing of these meds is crucial, so they'll advise you on the best nighttime approach.

By the way, if you ever want to explore different avenues for managing your symptoms or have questions, I've got a suggestion. You might want to check out https://releaf.co.uk/medical-cannabis-card for a cannabis card. I got mine there, and it's been a game-changer.

[Machair]

I have a theory about this as I suffer from dreadful sleep issues and can be too wired to sleep and have horrid adrenaline surges. If I stand sit and lie down the difference in my BP is incredible. Standing is often 73/58, sitting 90/60 and lying 115/70. I have ME as well as dysautonomia. I think if I am upright for too many hours without getting flat, even for just 10 minutes, or let my fluid intake fall, the only way blood is getting round is by adrenaline. I think it is keeping me alive and has done for 27 years since diagnosis. However at bedtime this is all running through my system and causes surges and even panic attacks. If I do something really silly like have a hot bath before bed this will make things so much worse, I will literally be awake for hours in a wired state. I think the only success I have had is with very calm evenings and early nights, and nothing that triggers adrenaline so no talking on the phone or eating late meals and a host of other things that increase this likelihood which can be terrifying.  

[Jyoti]

10 hours ago, Machair said:

I think the only success I have had is with very calm evenings and early nights, and nothing that triggers adrenaline so no talking on the phone or eating late meals and a host of other things that increase this likelihood which can be terrifying.  

Oh jeez.....do I know what you are talking about!  I just hate the rigidity that dictates this part of my life (and there are others just as circumscribed--we are talking about the end of the day here...) but if I try to deviate or 'cheat' a little, boy do I pay.  It is crazy that a phone call at 6pm--a happy and welcome call in most regards except for the time--results in an almost entirely sleepless night.  Same with eating late for me too.  And if for some reason, I am obliged to be upright any later than 7pm, it's curtains for the night.  I theorize, like you @Machair, that once the blood has stopped getting to my head in any normal way, the adrenaline kicks in to save the day.  If I am up and can't get flat, it's the only option my body has at its disposal.

I'm sorry you have those awful adrenaline surges.

I have ME as well as POTS and NMS, btw.

I  have a raft of things that DO get me pretty consistently good sleep if I am in bed before pumpkin time.  I use an Apollo Neuro device religiously as well as THC, melatonin, chamomile flower extract and a sleep patch.  I have (more rigidity) a timed routine when I take/apply them all that I have developed over the years and I notice on my Visible app data that it works pretty well 6 nights out of 7. I'm feeling pretty good about it in general, but I definitely went off course this afternoon and so this thread is timely

[Machair]

Jyoti this is so helpful thank you. I think this is exactly the way I am and have been for 27 years. It has been such a struggle. I am thankful I can still do things but the payback is horrific in terms of the adrenaline if I exceed limits, and sleep is so vital if nothing else to escape from the horrid alternative of being awake 24 hours in a wired state.

How are your mornings do you find them difficult? I find they can be difficult if my BP is low and this makes me anxious.

I find even going out in the evening, which I rarely do but love to, is a risk for a very poor night afterwards. For example I went into London a couple of weeks ago for a concert and just missed the train so ended up on the last one. I felt ok till I sat down and a sudden panic attack started which was absolutely terrifying. I am sure the cause was being upright for far too many hours causing an adrenaline surge but even so it wasn't good. Luckily these don't happen often but they are all associated with too long upright. I get minor surges of adrenaline but the full blown panic attacks are much harder to cope with. These can also happen at night if I haven't had a restful evening and have even woken me up from sleep.

[Sushi]

On 2/4/2024 at 4:32 PM, Jyoti said:

I use an Apollo Neuro device religiously 

Tell me about that. I have seen the ADs but have been sceptical as so few things actually have a positive effect on sleep for me. How does it work and how expensive is it.

I do the same sort of evening regimen—even a short phone call ruins the possibility of sleep—which has annoyed some of my friends who just can’t comprehend that. Funny though, a bit of texting doesn’t bother me much. Something about talking…