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

[CallieAndToby]

So I've been relying on CBD to help with sleep for quite some time now but for the fourth time it quit last week and I haven't really slept since and I could not travel to UAB, my mom made the final decision on this based on many factors. Increasing the dose doesn't help and I'm just tired of dealing with it plus certain brands of CBD won't work while others do, dosing is difficult and it doesn't address the adrenaline and just stops working after awhile.

They give me autonomic stuff to take during the day but I'm so sleep deprived I get extremely sleepy so I'm wondering what do dysautonomia doctors prescribe at night to calm down the sympathetic nervous system for restful sleep? Last night I took all my usual meds and it doesn't feel like I slept at all, no energy, eyes rolling around in my head. I don't have anybody to prescribe mestinon but I'm wondering if it's something that can be taken at night? I take a beta blocker on top of sleep pills atm, not helpful. I have tried gabapentin in the past and tried it again last week and it causes an insane amount of next day sedation for me, just makes me a zombie, so not something I can tolerate. 

[cmep37]

I know exactly how you feel - to be honest I went for at least 10 years feeling like I never really slept.  I would fall into a light doze around 3am and jolt awake after 30-60 minutes and then be awake for another couple of hours before dozing off again for another 30-60 minutes and that would be it.  The thing that helped me is low-dose Trazodone.  I take 100mg which is less than the usual dose for depression.  It does help me if I take it early enough - I was told to take it at bedtime but that doesn't work for me, I need to take it around 6-7pm in order to get to sleep around midnight.  My rheumatologist suggested Amitriptyline or Doxepin but I wouldn't recommend them myself, they increased my resting HR and gave me a terrible dry mouth and eyes but my Mum and Granny both find Amitriptyline helpful for pain and sleep.  I still don't sleep brilliantly, I don't sleep that deeply and I do wake up a lot but I get at least 4 hours a night now and sometimes as much as 6 hours which makes a tremendous difference.

[Sushi]

I am in the same boat—surprise, surprise! I’ve found one supplement that is particularly aimed at reducing cortisol at night—Seriphos. I do think it is helping though it doesn’t do the whole job.

My doc tried me on a low dose of gabapentin and it actually kept me awake so now I am taking it in the morning and it makes me more alert during the day. Good luck with this and let us know if you discover something.

[RecipeForDisaster]

I’m in the same boat, too. I usually get less than 2 hours of sleep in a night, despite trying everything - supplements, vagal stimulation, lavender, you name it. If my BP wasn’t so low, I’d want to try clonidine. The beta blocker helps but is not enough. My heart pounds too hard for me to sleep. If I do get to sleep, any tiny thing will wake me up, and then I can’t get to sleep again.

[Pistol]

@CallieAndToby22 - when my SNS goes into overdrive during flares ( like it does right now after having had several serious health issues ) I cannot sleep more than a few hours at night, leaving me wired on adrenaline and exhausted each day. What helps me is this regime: Ativan 0.5 mg at bedtime one day, half of a Cyclobenzaprine ( muscle relaxer, I have tense muscles from the excess adrenaline ) the next night, and occasionally Benadryl the third night. If I do this a few days or a week I often am well enough to attempt sleeping without medication. Also - my autonomic specialist recommends melatonin, since it is also a neurotransmitter. It does not really put me to sleep but it is supposed to help. Some patients do well with just the melatonin

[icthus]

Too much adrenaline is a bummer, and it is really sad to read some of your testimonies. Sleeplessness is horrible. I experience it, as well. I can wake up drumming my fingers, and my physician's response is "yep." I stay in bed until I get 7 hours of sleep or 9 hours of reclining, in which case there was less than 7 hours of sleep that night. Melatonin often helps me fall asleep but there is a process becuase of the half life of melatonin. I must go to bed, get it warm (because my body is typically cold), have the covers and pillows in place. If I am not asleep within 30 mintues, then I take 3 mg melatonin (Insomnitol). Melatonin is said to have a 30-minute half life, with maximum benefit at 60 minutes, but some stays in the system for several hours. Of note, if I'm not asleep within 20 of administering melatonin, I'm probably going to be up for awhile. Too much adrenaline for the melatonin or....?

If I wake up 2-4 hours later, and I cannot fall asleep within 20 minutes, I take another Insomnitol, and usually fall asleep, making my total night dose 6 mg.  From the little I've read, melatonin helps you fall asleep (within the first 20 minutes of administration) but it does not keep you asleep, hence waking up later in the night. Waking up is not a melatonin issue. 

This link gave me some insight about melatonin and the circadian cycle. It might be helpful.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057895/ 

For what it's worth, I also listen to a monotone sermon that posits no shockingly new information that would spark interest. It's sorta like watching Perot, whom I thoroughly enjoy even though his movies tend to be a bit slow moving, but I don't want a monitor on while trying to sleep. Cognitive dissonance! I use my cell phone apps for monotone sermons.

[CallieAndToby]

Thanks for the responses everyone. I am on a lot of medication at night and it doesn't help and makes me sedated and drugged next day. I have been taking melatonin for the past 15 years every night. I wake up and can't get back to sleep even if I take medication and melatonin. Things have especially been worse since the tinnitus started, makes it very hard to relax, sleep, fall back asleep, causes more adrenaline. CBD has been the best but I have already tried other reputable brands and it simply has quit working. I saw a neurologist and he said I was extremely sleep deprived and prescribed yet another sleep med but it's completely illogical to keep taking more medication when it doesn't help and makes me next day sedated and drugged. I wish they would look for root causes instead of drugging patients!!!!!!!!! I've even tried things like xyrem in the past. I am also in a lot of pain without any treatment and severe Interstitial Cystitis and bladder pain, frequency, urgency, not feeling empty....... Very bad headaches as well but in my state they don't want to prescribe anything, they send us to medical marijuana doctors but I've tried that and it didn't help my pain. 

[potsdo]

Sorry to hear about everyone's sleep difficulties. I'm in the same club unfortunately. I take 0.25 Ativan at night to take the edge off the adrenaline surges. I've been going to bed at 9pm, intermittently nodding off until 3-4am, and then tossing and turning until 6am at which point I just get up. I was just diagnosed with Type 2 diabetes so that's contributing to the sleep issues. It would be easier if I could nap the next day for a bit, but, the adrenaline surges don't let up if I try to nap. What a crazy illness!

[CallieAndToby]

On 11/21/2021 at 1:37 PM, docpots said:

Sorry to hear about everyone's sleep difficulties. I'm in the same club unfortunately. I take 0.25 Ativan at night to take the edge off the adrenaline surges. I've been going to bed at 9pm, intermittently nodding off until 3-4am, and then tossing and turning until 6am at which point I just get up. I was just diagnosed with Type 2 diabetes so that's contributing to the sleep issues. It would be easier if I could nap the next day for a bit, but, the adrenaline surges don't let up if I try to nap. What a crazy illness!

I wake up at ungodly hours as well and it never feels like I've slept (totally non restorative). I've tried 2 other reputable CBD brands and it seems to be making things worse where-as 2 months ago it was knocking me out and giving me restorative sleep. The midrodine at tiny tiny dose had some benefits like helping to calm down adrenaline but after a few weeks I was having trouble urinating then this was greatly affecting my sleep and rest and I just had to quit taking it so I'm really bummed, I need some sort of vasoconstriction but the vasodilators are what help my bladder......... Have you found any helpful doctors in Tampa? I'm in North Florida and struggling, I also have many other health conditions and a very abnormal PET brain scan from years ago that has still not been explained. My friend is in the NIH undiagnosed disease program and she went to one place, one setting, and was seen by every possible specialist and they came together as a team to discuss her case, and it was found out she did not have ME but actually primary mitochondrial disease and other things as well as many genetic mutations; this seems to be the only program where doctors come together and discuss everything under the sun together but they only accept 9% of applicants and patients wait about a year to be accepted or seen. 

 

[maggs]

It's amazing how different people with dysautonomia can have such different symptoms! I have a different issue- I could sleep all day and all night every day if nothing forced me to get up. Has anyone else here had a sleep study? Just curious. I've had a few and I'm borderline narcoleptic and have mild positional sleep apnea. Sadly, even when I do sleep plenty I don't wake up refreshed and I could very easily lay back down and fall back asleep, so I can relate to the non-restorative sleep. I'm sorry to hear about what essentially sounds like insomnia. That sounds really rough. 

[RecipeForDisaster]

I’m also trying to get into UDN at NIH. Fingers crossed.

 

I've had a home sleep study and I do have very well treated sleep apnea, using CPAP.

[CallieAndToby]

17 hours ago, maggs said:

It's amazing how different people with dysautonomia can have such different symptoms! I have a different issue- I could sleep all day and all night every day if nothing forced me to get up. Has anyone else here had a sleep study? Just curious. I've had a few and I'm borderline narcoleptic and have mild positional sleep apnea. Sadly, even when I do sleep plenty I don't wake up refreshed and I could very easily lay back down and fall back asleep, so I can relate to the non-restorative sleep. I'm sorry to hear about what essentially sounds like insomnia. That sounds really rough. 

I had a sleep study done a long time ago and essentially it showed tachycardia during my sleep and a lot of alpha intrusions. This was before my diagnosis of dysautonomia but it lead to the diagnosis because my HR was so high! Now I take a beta blocker at night and it has really fixed that but it never feels like I've slept and I can't nap either as the earlier person stated. During my college years I would nap about every afternoon and it helped tremendously because I always had non restorative sleep so for some reason after a nap I would feel like a brand new person and could usually continue my studies, take a walk, and didn't interfere at all with night sleep but actually helped. But with all this adrenaline I haven't really napped or slept well in a long time. I have watched some documentaries on narcolepsy and that sounds awful as well because of the non restorative problems with the sleep and always feeling sleepy, have they offered treatment? I mean I know it entails something for sleep even to the extreme of xyrem and some stimulant or the nuvigil and provigil drugs in the morning. 

 

16 hours ago, RecipeForDisaster said:

I’m also trying to get into UDN at NIH. Fingers crossed.

 

I've had a home sleep study and I do have very well treated sleep apnea, using CPAP.

Best of luck!!!! Hope they accept you. Really sounds like the best program out there for complex medical cases and my friend has had good success with the NIH UD program and they actually just reopened her case so it sounds like they're really trying to help improve her quality of life. 

[RecipeForDisaster]

1 hour ago, CallieAndToby22 said:

I had a sleep study done a long time ago and a big issue was just the constant going to the bathroom so they finally let me unhook myself until I could fall asleep. Essentially it showed tachycardia during my sleep and a lot of alpha intrusions. This was before my diagnosis of dysautonomia but it lead to the diagnosis because my HR was so high! Now I take a beta blocker at night and it has really fixed that but it never feels like I've slept and I can't nap either as the earlier person stated. During my college years I would nap about every afternoon and it helped tremendously because I always had non restorative sleep so for some reason after a nap I would feel like a brand new person and could usually continue my studies, take a walk, and didn't interfere at all with night sleep but actually helped. But with all this adrenaline I haven't really napped or slept well in a long time. I also developed severe tinnitus a month ago and sleep and rest has been extra difficult. I have watched some documentaries on narcolepsy and that sounds awful as well because of the non restorative problems with the sleep and always feeling sleepy, have they offered treatment? I mean I know it entails something for sleep even to the extreme of xyrem and some stimulant or the nuvigil and provigil drugs in the morning. 

 

Best of luck!!!! Hope they accept you. Really sounds like the best program out there for complex medical cases and my friend has had good success with the NIH UD program and they actually just reopened her case so it sounds like they're really trying to help improve her quality of life. 

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).

[maggs]

@CallieAndToby22 I do have Modafinil for really bad days, but it causes tachycardia (as all uppers do), so I can't use it regularly. Mostly I've managed by getting an accommodation at work for a late start and only use the Modafinil when I absolutely have to be up early. It doesn't help with the waking up part (I usually sleep through alarms for hours), but it helps once I'm up with staying awake. I'm hopeful that as I lose more weight some of this will be easier to manage- before my diagnoses my doctors just kinda threw prednisone at me and I gained about 100lbs. Now that things are starting to add up/get figured out I've been able to stay off prednisone and lose about 30lbs. It's all a work in progress. But sleep is so freaking important- it's impossible to feel well when you aren't sleeping (or getting restorative sleep). I wish there was an easier answer out there for each of us. Maybe someday. 

@RecipeForDisaster I'm not sure where you live, but Cedar-Sinai in Los Angeles has the Center for the Undiagnosed (https://www.cedars-sinai.org/programs/undiagnosed-patient-center.html) that's separate from the NIH. I applied to the NIH's UDP years ago and was denied- from what I understand that's pretty common for adults to be denied (they generally accept more kids, but they are looking for genetic stuff specifically). But Cedar-Sinai operates quite different. They do charge a $500 fee to have their panel of doctors review your case, but after that it's all billed through insurance like normal doctor visits. If my current work-up falls through I plan to head to Cedar-Sinai next. But I will say that my new allergist/immunologist seems to be onto something with MCAS and EDS for me. My old doctors tried to rule it in or out years ago without success, so we'll see what comes of it this time around. There's also resources like Grand Rounds (https://grandrounds.com/) and Crowdmed (https://www.crowdmed.com/) that have been helpful for me, though I'll say CrowdMed can be hard to navigate because it's hit and miss on who participates in your case (random people, med students, retired doctors, etc). Obviously there's no guarantee for quality with Crowdmed based off how it operates, but I still found the input useful. As for Grand Rounds, they were able to get a second opinion for me through a fantastic doctor who made some incredibly helpful recommendations. Anyway, just a thought. 

[RecipeForDisaster]

5 hours ago, maggs said:

@CallieAndToby22 I do have Modafinil for really bad days, but it causes tachycardia (as all uppers do), so I can't use it regularly. Mostly I've managed by getting an accommodation at work for a late start and only use the Modafinil when I absolutely have to be up early. It doesn't help with the waking up part (I usually sleep through alarms for hours), but it helps once I'm up with staying awake. I'm hopeful that as I lose more weight some of this will be easier to manage- before my diagnoses my doctors just kinda threw prednisone at me and I gained about 100lbs. Now that things are starting to add up/get figured out I've been able to stay off prednisone and lose about 30lbs. It's all a work in progress. But sleep is so freaking important- it's impossible to feel well when you aren't sleeping (or getting restorative sleep). I wish there was an easier answer out there for each of us. Maybe someday. 

@RecipeForDisaster I'm not sure where you live, but Cedar-Sinai in Los Angeles has the Center for the Undiagnosed (https://www.cedars-sinai.org/programs/undiagnosed-patient-center.html) that's separate from the NIH. I applied to the NIH's UDP years ago and was denied- from what I understand that's pretty common for adults to be denied (they generally accept more kids, but they are looking for genetic stuff specifically). But Cedar-Sinai operates quite different. They do charge a $500 fee to have their panel of doctors review your case, but after that it's all billed through insurance like normal doctor visits. If my current work-up falls through I plan to head to Cedar-Sinai next. But I will say that my new allergist/immunologist seems to be onto something with MCAS and EDS for me. My old doctors tried to rule it in or out years ago without success, so we'll see what comes of it this time around. There's also resources like Grand Rounds (https://grandrounds.com/) and Crowdmed (https://www.crowdmed.com/) that have been helpful for me, though I'll say CrowdMed can be hard to navigate because it's hit and miss on who participates in your case (random people, med students, retired doctors, etc). Obviously there's no guarantee for quality with Crowdmed based off how it operates, but I still found the input useful. As for Grand Rounds, they were able to get a second opinion for me through a fantastic doctor who made some incredibly helpful recommendations. Anyway, just a thought. 

Thanks. That sounds amazing - I wish they did remote care. I’m in the other end of the country in New England. I’d be working with Harvard and I’m already a patient at Brigham & Women’s. I’d definitely try grandrounds and crowdmed, though, what do I have to lose? Thanks!

[maggs]

@RecipeForDisaster Ah! I've only been to Boston/New England once but fell in love with it! I hope to one day move to Boston.

Have you had genetic testing done yet? I did a quick search, and I know Alabama isn't super close to where you likely are, but the University of Alabama at Birmingham also offers an Undiagnosed program separate from the NIH (https://www.uab.edu/medicine/genetics/patient-care/clinical-services/undiagnosed-diseases). And Columbia I'm guessing is close-ish to you, they have the DISCOVER program for undiagnosed patients (https://precisionmedicine.columbia.edu/content/rare-diseases). Maybe one of those could help you? I don't know your personal story or symptoms, but sometimes getting into a place that is interested in the difficult cases is all it takes to start heading in the right direction in my experience. If neither of those locations are close enough to you, I can look for more. I'm much more familiar with what's available on the west coast (since that's where I am), but this has become something I'm passionate about and am happy to dig into so you have more options. 

[CallieAndToby]

34 minutes ago, maggs said:

@RecipeForDisaster Ah! I've only been to Boston/New England once but fell in love with it! I hope to one day move to Boston.

Have you had genetic testing done yet? I did a quick search, and I know Alabama isn't super close to where you likely are, but the University of Alabama at Birmingham also offers an Undiagnosed program separate from the NIH (https://www.uab.edu/medicine/genetics/patient-care/clinical-services/undiagnosed-diseases). And Columbia I'm guessing is close-ish to you, they have the DISCOVER program for undiagnosed patients (https://precisionmedicine.columbia.edu/content/rare-diseases). Maybe one of those could help you? I don't know your personal story or symptoms, but sometimes getting into a place that is interested in the difficult cases is all it takes to start heading in the right direction in my experience. If neither of those locations are close enough to you, I can look for more. I'm much more familiar with what's available on the west coast (since that's where I am), but this has become something I'm passionate about and am happy to dig into so you have more options. 

Thanks for all the information! I didn't know UAB had an undiagnosed program and I need help and I'm in the south!!! There is a program in Atlanta and they rejected me as well. Today I went to a doctor and got diagnosed with sinusitis and I heard him talking to his colleagues about how complex my situation was and he seemed genuinely concerned, at least he was nice. He is very new to the area and didn't have any suggestions but I'm glad you've posted these other centers and programs, this is very helpful. 

[maggs]

@CallieAndToby22 Sinus issues suck! I've had 3 sinus surgeries so far, and assume I'll need more in the future. But I cannot recommend sinus rinses with a squeeze bottle (rather than a neti pot) highly enough! I'm willing to bet I would have needed more sinus surgeries already had I not used it! But I hope you can get some better help soon! If there's any other info I can offer let me know! I do this as a sort of hobby- I've been fighting the medical system long enough that I've learned a thing or two over the years on navigating it all. 

[potsdo]

On 11/30/2021 at 11:56 AM, CallieAndToby22 said:

I wake up at ungodly hours as well and it never feels like I've slept (totally non restorative). I've tried 2 other reputable CBD brands and it seems to be making things worse where-as 2 months ago it was knocking me out and giving me restorative sleep. The midrodine at tiny tiny dose had some benefits like helping to calm down adrenaline but after a few weeks I was having trouble urinating then this was greatly affecting my sleep and rest and I just had to quit taking it so I'm really bummed, I need some sort of vasoconstriction but the vasodilators are what help my bladder......... Have you found any helpful doctors in Tampa? I'm in North Florida and struggling, I also have many other health conditions and a very abnormal PET brain scan from years ago that has still not been explained. My friend is in the NIH undiagnosed disease program and she went to one place, one setting, and was seen by every possible specialist and they came together as a team to discuss her case, and it was found out she did not have ME but actually primary mitochondrial disease and other things as well as many genetic mutations; this seems to be the only program where doctors come together and discuss everything under the sun together but they only accept 9% of applicants and patients wait about a year to be accepted or seen. 

 

No good doctors in Tampa. The ones I've talked to all say - "This is uncharted territory." Which means they don't know anything about dysautonomia. There's a Dr. Trevino in Clearwater who supposedly treats dysautonomia patients. Unfortunately, he's so busy with his practice, he's not taking on any new patients. I tried the "I'm also a doctor" but his staff wouldn't budge. There's Mayo Clinic in Jax. That's where I went with my first relapse. They weren't great. I had already diagnosed myself and had done most of the diagnostic testing. Every doctor pretty much tells you to try various meds until you find a combo that works for you. Very frustrating. My best friend is a cardiologist at the Cleveland Clinic and has treated dysautonomia patients and he tells me the same thing I've heard for the last 20 years. What brands of CBD were you using that helped?

[CallieAndToby]

18 hours ago, docpots said:

No good doctors in Tampa. The ones I've talked to all say - "This is uncharted territory." Which means they don't know anything about dysautonomia. There's a Dr. Trevino in Clearwater who supposedly treats dysautonomia patients. Unfortunately, he's so busy with his practice, he's not taking on any new patients. I tried the "I'm also a doctor" but his staff wouldn't budge. There's Mayo Clinic in Jax. That's where I went with my first relapse. They weren't great. I had already diagnosed myself and had done most of the diagnostic testing. Every doctor pretty much tells you to try various meds until you find a combo that works for you. Very frustrating. My best friend is a cardiologist at the Cleveland Clinic and has treated dysautonomia patients and he tells me the same thing I've heard for the last 20 years. What brands of CBD were you using that helped?

It's interesting to hear from a doctor who is also a patient, but I'm sorry you're suffering. I tried to get in with Dr. Trevino as well no luck. No help in the Panhandle is all I can say. And yes I have been trying dysautonomia meds for nearly 15 years with no luck, huge amount of side effects that outweigh any good. I had a trial of IVIG in the past for autoimmune encephalitis and it inadvertently helped the Dysautonomia but it was discontinued by insurance because of cost and now the best thing for me is saline IV infusions but the doctors here are very apprehensive about ordering them. Like you, I'm very frustrated and extremely tired. I used Naysa full spectrum CBD at first and that helped then it quit, then I found funky farms and it worked for a few months and quit, then I tried soul cbd and charlottes web and they didn't work along with many other random brands from local shops. My medical marijuana license is expired so I'm attempting to remedy that situation. My mom has been an RN for 30 years and advocates so much for me for which I'm so appreciative but to no avail. 

[RecipeForDisaster]

On 12/1/2021 at 4:11 PM, maggs said:

@RecipeForDisaster Ah! I've only been to Boston/New England once but fell in love with it! I hope to one day move to Boston.

Have you had genetic testing done yet? I did a quick search, and I know Alabama isn't super close to where you likely are, but the University of Alabama at Birmingham also offers an Undiagnosed program separate from the NIH (https://www.uab.edu/medicine/genetics/patient-care/clinical-services/undiagnosed-diseases). And Columbia I'm guessing is close-ish to you, they have the DISCOVER program for undiagnosed patients (https://precisionmedicine.columbia.edu/content/rare-diseases). Maybe one of those could help you? I don't know your personal story or symptoms, but sometimes getting into a place that is interested in the difficult cases is all it takes to start heading in the right direction in my experience. If neither of those locations are close enough to you, I can look for more. I'm much more familiar with what's available on the west coast (since that's where I am), but this has become something I'm passionate about and am happy to dig into so you have more options. 

Thanks! I love it here. Boston is good for a day trip, but I’m too much of a country girl to live there. I’ll be there for hospital visits in a couple of weeks, though. I have had exhaustive genetic testing there - they say I’ve definitely got something genetic, but it doesn’t have a known marker yet.

 

The Columbia program sounds promising! Thank you!

[potsdo]

On 12/2/2021 at 7:50 AM, CallieAndToby22 said:

It's interesting to hear from a doctor who is also a patient, but I'm sorry you're suffering. I tried to get in with Dr. Trevino as well no luck. No help in the Panhandle is all I can say. And yes I have been trying dysautonomia meds for nearly 15 years with no luck, huge amount of side effects that outweigh any good. I had a trial of IVIG in the past for autoimmune encephalitis and it inadvertently helped the Dysautonomia but it was discontinued by insurance because of cost and now the best thing for me is saline IV infusions but the doctors here are very apprehensive about ordering them. Like you, I'm very frustrated and extremely tired. I used Naysa full spectrum CBD at first and that helped then it quit, then I found funky farms and it worked for a few months and quit, then I tried soul cbd and charlottes web and they didn't work along with many other random brands from local shops. My medical marijuana license is expired so I'm attempting to remedy that situation. My mom has been an RN for 30 years and advocates so much for me for which I'm so appreciative but to no avail. 

Medical marijuana does suppress the sympathetic nervous system. A physician friend of mine suggested I try it, but, in my line of work, I don’t want my name to show up somewhere on a list of mmj card holders. Is Dr. Thompson still practicing? I recall he was in the panhandle and was out of the office for a bit because he also has Dysautonomia. Not sure if he’s back to work.

[CallieAndToby]

17 hours ago, docpots said:

Medical marijuana does suppress the sympathetic nervous system. A physician friend of mine suggested I try it, but, in my line of work, I don’t want my name to show up somewhere on a list of mmj card holders. Is Dr. Thompson still practicing? I recall he was in the panhandle and was out of the office for a bit because he also has Dysautonomia. Not sure if he’s back to work.

Dr. Thompson retired but I did work with him for a couple of years. I like him a lot but I don't respond well to the medication. 

[Picklesquish]

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,

[potsdo]

On 11/8/2021 at 2:09 PM, cmep37 said:

I know exactly how you feel - to be honest I went for at least 10 years feeling like I never really slept.  I would fall into a light doze around 3am and jolt awake after 30-60 minutes and then be awake for another couple of hours before dozing off again for another 30-60 minutes and that would be it.  The thing that helped me is low-dose Trazodone.  I take 100mg which is less than the usual dose for depression.  It does help me if I take it early enough - I was told to take it at bedtime but that doesn't work for me, I need to take it around 6-7pm in order to get to sleep around midnight.  My rheumatologist suggested Amitriptyline or Doxepin but I wouldn't recommend them myself, they increased my resting HR and gave me a terrible dry mouth and eyes but my Mum and Granny both find Amitriptyline helpful for pain and sleep.  I still don't sleep brilliantly, I don't sleep that deeply and I do wake up a lot but I get at least 4 hours a night now and sometimes as much as 6 hours which makes a tremendous difference.

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.