Sleepless

I am at my wits end. I have been prescribed Multaq to try for the Atrial Tachycardia, but I have to wait about ten days to start because of insurance issues. I used to be able to take Propranolol to help me sleep because it toned down the SVT intensity. I barely sleep anymore because I wake up in constant tachycardia, bigeminy, etc. For those that dont know, my episodes are almost exclusively at night. I am so tired. Does anyone have any recommendations for sleep? I have tried all the usual things, but nothing has helped. I go to sleep fine, but I just wake up constantly because of the fast rhythm. I am trying to be patient, but it has seriously been over a year since I slept well...

I am so sorry! Before my ablation my Afib/flutter was usually at night and I also found it impossible to sleep. I also had insurance issues when I was prescribed Multaq and after finally getting it approved with a ridiculously high copay, ordered it from Canada after that. I hope it helps—with antiarrythmic meds you never know until you try. Note: It is best absorbed when taken with a fatty meal, some thing like salmon works well.

Quote
MeganMN
Does anyone have any recommendations for sleep?

One thing that works pretty well for me are listening to yoga nidra scripts. Don't know if your heart feelings would impact the efficacy. I have tiny mp3 player with earbuds that I use.

"Yoga Nidra is a form of guided meditation also known as “yogic sleep” or “effortless relaxation”. It’s usually practiced lying down with a teacher guiding the session. The practice draws our attention inwards, and we learn to surf between the states of wakefulness and sleep, where our body finds its natural state of equilibrium (homeostasis) – the breath balances and becomes quiet, unconscious and conscious aspects of the mind reveal themselves, and we fall into an innate state of deep, blissful awareness."

If you have any interest, I can link more info.


Completely different, in 2012 I was having a lot more afib (for me). It was associated with a divorce & I thought it was divorce stress, but later figured out it was likely calcium from me stress eating wheels of brie. I quit the brie and my afib control went back to my excellent pre divorce level. In any case, at one point I had afib 4 nights in a row and a cardio suggested I take flecainide chronically instead of PIP. I did and it worked, but I wanted to titrate it down as much as I could. Our site's founder, Hans Larsen, had posted on using ginger for vagal afibbers. I decided to try it, taking it before bed as I titrated the flec down. Hans had me write an article on my experience in "The Afib Report." It worked pretty well, not as good as the flec, but was not a med. This is a search on all of my posts that include ginger. I titrated the flec down to 0 over a month, while taking the ginger before bed. I continued to use it for another 5 or so months, till I came up with the idea that calcium from brie (I ate no other dairy or concentrated form of calcium), and successfully tested it.

This is a search on the site on all posts with ginger in them. Note, some people had negative experiences with ginger.

My thought is that the ginger would raise sympathetic tone and since your issues are in the evening, presumably when sympathetic tone is lower, perhaps ginger, taken before your episodes typically start in the evening, might ward off the episode. Also member Jackie warned about using ginger sourced from China because of potential contamination.

You know what might be an interesting experiment? Try staying awake all night and then going to sleep in the morning, as if you're working 3rd shift. I worked a 3rd shift job when I was younger and it's definitely a different experience. I wonder if the tachycardia is actually being triggered by sleep itself or by your cortisol levels. If it's cortisol, the tachycardia will happen overnight even though you're awake, but if it's sleep it will happen the next day.

Have you had a sleep study done?

Jim

George, are you using fresh ginger or ginger supplement?

Quote
GeorgeN

This is a search on the site on all posts with ginger in them. Note, some people had negative experiences with ginger.

My thought is that the ginger would raise sympathetic tone and since your issues are in the evening, presumably when sympathetic tone is lower, perhaps ginger, taken before your episodes typically start in the evening, might ward off the episode. Also member Jackie warned about using ginger sourced from China because of potential contamination.

Quote
Yuxi
George, are you using fresh ginger or ginger supplement?

At the time I was doing this, in 2012 & 2013, I was generally using organic powdered ginger spice.

What a wealth of information!! I have begun researching the ginger connection and have ordered some organic ginger powder. Thank you SO much for the studies! I find that super helpful. My EPs have always scratched their heads about the nighttime connection. I will certainly try the ginger! I have had a nighttime SPO2 study that was negative for sleep apnea, but not a full sleep study. I tend to be a night owl, and the episodes usually begin around 7 pm. I usually go to sleep sometime between 10:30-11:30pm. The episodes are generally pretty terrible and consistent for about 4-5 hours before I go to sleep and continue until morning, with a peak,around 2-3 am. When I reviewed my last holter, it showed a general average of 20% burden of ectopics/SVT, but if I actually break it down, it is about 2-5% during the day, and 30-50% at night, with as high as 80% burden!

I have had an extensive cortisol test done and it wasnt overly out of whack. I occasionally work the late shift and go to sleep around 3am. It seems to kick in around 7-8pm regardless, although I have not tried to stay up late for multiple days in a row. It seems independent of sleep, though. I will look into all of your suggestions and certainly try the ginger!! Thank you so much. You have such a wealth of knowledge.

I lay awake most of the night, not on purpose, and had an interesting thought. I have had trouble describing my symptoms to my EP, as they seem to question why the 'normally symptomless' PACS bother me so much at night. Last night as I was laying in bed trying to sleep, I realized something. When I was in my last EP study without sedation, I felt the burst pacing. I could feel the electricity inside my heart pacing it. That is what the arrhythmia feels like as I lay in bed, not sleeping. It feels just like that weird electrical zap, zap, zap of the pacer wires. Weird.... Guess I can explain it better to him now.

I wish there was a way to send scripts to people that need them. I have several jars of multaq that never got opened.

Quote
KingFizzy
I wish there was a way to send scripts to people that need them. I have several jars of Multaq that never got opened.

I feel the same way about my unopened bottle of Eliquis. It seems like such a shame.....

have had a nighttime SPO2 study that was negative for sleep apnea, but not a full sleep study.

Given your only at night episodes, I would think sleep study in a sleep lab would be your logical next step

Jim

Quote
KingFizzy
I wish there was a way to send scripts to people that need them. I have several jars of multaq that never got opened.

I've donated unused meds to friends. In fact, one person here. Just keep the communications private. Nobody is going to prosecute you for mailing drugs to a friend as long as they're not controlled substances.

Quote
Carey

I wish there was a way to send scripts to people that need them. I have several jars of multaq that never got opened.

I've donated unused meds to friends. In fact, one person here. Just keep the communications private. Nobody is going to prosecute you for mailing drugs to a friend as long as they're not controlled substances.

Yes, even some of our doctors will sometimes do this with sealed bottles. Throwing away unopened, expensive medications that others could use, just doesn’t seem right. It is also toxic to the environment!

Join the club. It's 2am and I am not a bit tired. Hopefully I'll get sleepy at 4am.

I never had an issue falling asleep. I would hit the pillow and be out. Then in 2004 I started flecainide and stayed up as late as 5am and took cat naps. Now I'm off most drugs except cardizem and Eliquis and still I can't sleep.

I suggest starting a lifetime of controlled substance sleeping tablets.

Ahhh....so I am a certified Sleep Science Coach and have helped my clients who have struggled with chronic insomnia, finally get a good night's sleep.

In the case of MeganMN, I may not be as helpful at this point, as it sounds like your heart situation needs some resolution first. When you get that resolved, you may still have difficulty sleeping (hopefully not), because your brain is now conditioned to see your bed as a place you DON'T sleep - such as the case with Susan D. You may have some predisposing factors that make you a little prone to insomnia (like being a light sleeper), but then have some precipitating factors that trigger a bout of insomnia (like your tachycardia, Afib, reactions to medications), and finally, it often becomes perpetuating factors (things that keep insomnia going in the long run). It's the perpetuating factors that I can help my clients with.

If you want to reach me, you can email me at ToBHerd [at] gmail.com and I can let you know if I think I can help.

Sorry you are struggling with getting quality sleep. There is hope! ~ Barb



Edited 1 time(s). Last edit at 02/27/2024 10:56PM by Carey.

Barb, I hope you don't mind but I edited your post to conceal your email address from spammer email harvesting bots. Anybody can read this forum without signing up, which means spammers run bots that scan it for email addresses to harvest. When they find one, it gets added to a list. That list will then be sold and distributed and your email address will never be removed from it. So it's a bad idea to post your email address on forums like this openly. Recommend you do what I did with my edit when you post it.

Better yet, ask to 'meet' with the person via PM.