Sympathetic stuck on 'on?'

[ljimbo423]

The usual natural alternatives don't work for me, but if someone has found a specific acupressure point, I'd use it.

I found this on youtube. It's only 2:21 seconds long. There's a comment that says it reduced someone's BP from 140/80 to 120/80.

 

[tyson oberle]

I just bought this device. According to them, I should get this device in 10 days. I hope this works because my "flight or fight" is always on.

 

[Jyoti]

I hope it works too @tyson oberle! I look forward to hearing how it goes. I am sure it would be great to share here, but also feel free to PM me. I'd love to discuss....

 

[kangaSue]

I had a stent inserted in my r. carotid artery, very near the top of it, thus closer to the brain. Usually, in these cases, the BP drops for at least the first few mos. In my case, that hasn't occurred at all, as a matter of fact, it's hanging around about the 200 systolic point. Too high, even for me. Now I could do a very, very fast leap from that to 300 in no time. I've done it before and it's definitely stroke territory.

If you have a connective tissue issue causing carotid artery narrowing, have you had your renal arteries checked for any narrowing too? This can cause a mess up with your renin production which can cause high blood pressure, but blood renin levels can be normal if only one renal artery is narrowed (or in some rarer instances, because of just the left renal vein being narrowed can do it too).

 

[stefanosstef]

@Jyoti Did you notice improvement in sleep quality?I'm pretty sure my sympathetic is a big reason I'm waking up tired.HRV is also low.I may invest in this.

 

[Jyoti]

Same for me, @stefanosstef. I am not convinced this is going to solve my sleep issues, but I remain hopeful that it will progress in that direction. So far.... I am finding my waking times are pretty peaceful, which is better than fretting and stressing. I have turned it on a couple of times when I wake up in the night and I do think it has contributed to my falling back asleep--but I also hate all the various things I can say "I do think it has helped just a tad" about!

Sounds, though, like you aren't so much waking up as waking up tired. It might really help. It seems that for me, anything that helps me shift away from sympathetic dominance (and I feel dominated by it!) is contributing to a better quality of life.

 

[stefanosstef]

@Jyoti Yeah I dont wake up at night but it seems that I dont have much deep sleep either.I'm quite improved now that I'm on pramipexole but I can certainly do best.I know it because I take benzo once in a while and I truly feel then what it's like to wake up restored.Let us know how it progresses.Most reports I saw talk about subtle results but cfs patients might get more pronounced effects.

 

[kangaSue]

I see some of the reference links for the science behind this device involves driver fatigue research. From delving into this latter topic a bit more, I think that if these portable devices have efficacy from just a couple of different pressure points, then it could be assumed that driver fatigue research can carry over to this area too and "whole body vibration" , via a vibrating mat, chair, cushion, or something similar, should also do the trick of calming sympathetic nervous system excess.

Vibration from driving under monotonous conditions causes increasing sleepiness where the heart rate decreases, but heart rate variability overall increases and along with that, heart rate variability parameters representing the parasympathetic branch of the autonomous nervous system increases too.

There had been the unexpected findings of some increased activation of parameters representing the sympathetic branch of the autonomous nervous system in this research but hypothesis now to explain this is that it's due to stress induced by trying to avoid an incident because the drivers were in real (or realistically simulated) driving situations, so not likely to be an issue in different circumstances.

https://pubmed.ncbi.nlm.nih.gov/30978124/ Deriving heart rate variability indices from cardiac monitoring-An indicator of driver sleepiness
https://pubmed.ncbi.nlm.nih.gov/29871584/ The effects of physical vibration on heart rate variability as a measure of drowsiness

 

[lenora]

Hello @ljimbo423 , @kangaSue &@jyoti.....Thanks for your assistance in delving into this issue.

Jim, I did look at the acupressure video and it was very helpful. I knew there were specific points, but had forgotten all of them. You're always ready to aid everyone and it's most appreciated. You're so kind.

@kangaSue ....thanks for the info you provided. Driver fatigue is definitely not one of my problems , b/c I never go anywhere except to a doctor's office or the hospital and my husband drives. As a matter of fact, we sold my car last year b/c it never left the garage. However, you brought up something that may be highly beneficial to someone else, and that's what we should be doing for each other. When you're ill, doing the tiniest bit can often be too much. You're a wonderful, helpful person and I thank you.

@Jyoti....You've certainly been keeping this site hopping with your Apollo discovery, haven't you? I already questioned you on another site, appreciated your prompt and helpful response and can't thank you enough. I hope this will help you, and you'll find peaceful and restful moments.

And me? Well, my BP is still up, down and all around....very typical of me. I had high hopes for the stent surgery, it was narrowed by 95% and the l. one is neglible. It's hard to understand. I'm just thankful that he was able to preserve what he could. I now have 5 stents in my heart and 1 in my carotid artery. I spend a lot of time in hospitals and operating rooms.

For those with sleep problems, I've noticed this: Short acting anesthetics and pain meds, combined with steroids lead me to having hallucinations and finally, one day, non-stop verbal complaints. I feel horrible about how I acted towards the staff, but I guess the combo of drugs, lack of sleep and especially the steroids all played a part in what happened. It ended with me having the worst headache of my entire life, it was like nothing I'd ever experienced. I hope none of you will go through these things. As for steroids: I detest them. At first you feel like Superwoman, and your mood is lifted entirely. Then the collapse occurs after you stop taking them. I mean no energy, zip, none...I fell and caused serious damage on probably my 11th one. I'm still trying to get over the pain of it, and I've been going to PT (always ask for someone who does myofascial therapy...look under "fascia" and you'll find out why this is important). And the weight gain is true...why anyone would choose to go on this drug is completely beyond me. Personally, I think muscles are way overrated. You're talking about your sanity for the rest of you life...take it seriously, please.

Yes, they're wonderful for inflammation, and simply have to be given at certain times, but the amounts and behavior are carefully monitored. They've saved many lives, probably my own included, but they're not to be played around with. With all of you, I think I'm preaching to the converted!! I know you wouldn't use them illegally, but too many people do. Thanks again for your help. Yours, Lenora.

 

[Mary]

@Jyoti - thanks so much for your detailed post about the Apollo device! I think almost everyone with ME/CFS deals with an overactive sympathetic nervous system - I look forward to hearing your updates And yes, $350 when compared to all the supplements etc. we have to use, sounds like a bargain! It was especially impressive that it may have warded off PEM for you!

You and @stefanosstef might be interested in a binaural beats app to help with sleep - I did a post about it here last March: Binaural beats app (android - free) helping with sleep | Phoenix Rising ME/CFS Forums
however, by the end of July 2020 it had stopped helping . . . but it was free and so worth using for awhile at least. I'm restarting it and it's helping some, so am curious to see how long it will help this time. However, when I look at Google Play, this app no longer appears, but there are lots of other ones (which I haven't tried)

This thread might help as well with sleep: (2) What has helped you with sleep/insomnia - post links | Phoenix Rising ME/CFS Forums

 

[Jyoti]

You and @stefanosstef might be interested in a binaural beats app to help with sleep

You know, sometimes it takes a certain number of repetitions to really land something. My daughter is enamored of binaural beats and tells me all the time--you gotta try this, Mom. So...I think, having gotten a nudge from about six directions, I will. Thanks!

 

[Mary]

@Jyoti - if you don't mind, keep us posted about you do with the binaural beats as well, as well as the name of the app (android or apple?) - thanks!

 

[xebex]

@Jyoti I had the most incredible Lucid dream using binaural beats, its was truly amazing! sadly i've never been able to recreate the experience and got kind of bored with it, but I totally can see how helpful they can be!

 

[Jyoti]

I've got an app on my phone and can't wait till bedtime! Thanks @Mary and @xebex for the push. I'll let you know how it goes.

 

[kangaSue]

I think I've found a (really cheap) way to see if it could be worth going to the expense of purchasing one of these devices or not.

Doing a google search for "vibrating massager" didn't turn up much in wearable products but it did throw up a lot of adult sites flogging their wares for "intimate pleasure" so I thought to myself that if a massage mat could work for increasing heart rate variablility, why not a cheap $10 bullet vibrator strapped to the wrist or ankle too. And guess what - I think it does for me!

It's having a very calming effect on me when running, better than what I can achieve with doing self hypnosis, and it's also moderating the abdominal pain I get from having severe GI dysmotility issues.

The bullet's vibration was too intense initially but wrapping it in a bit of fabric until I could just feel a gentle vibration solved that problem. Crude solution but quite effective.

 

[Jyoti]

That's pretty cool, @kangaSue! So helpful to know this (though I can now happily regret my outlay!) and so inventive on your part. Anything that helps.....

 

[Jyoti]

Update: I've been using the Apollo for a month now and wanted to check in. As usual, my initial excitement was a bit out of line with the longer-term reality, but I have to say I LOVE THIS THING!

It has not changed my life in huge ways. I have not moved up the disability scale much if at all. And a lot of the optional 'modes' available are of zero value to me. But a couple of them have really become serious tools in my symptom management bag. As noted earlier, I do have a lot of difficulty with getting into stressed sympathetic state, especially when I push past my envelope.

When that happens, this device helps me down just enough so that I can start to collect myself. I don't know if others have this feeling, but sometimes I just want a benzo so badly I don't know what to do. The Apollo isn't quite as effective, but it makes some serious headway. For me anyway....

I wonder how the vibrator option is going @kangaSue ? Is that working at all for you? And....@tyson oberle did you get your Apollo? And how it that going?

 

[Pyrrhus]

You and @stefanosstef might be interested in a binaural beats app to help with sleep

I have also found binaural beats, listened to through headphones, to be enormously helpful for falling asleep. My favorite is Jeffrey Thompson's "Brainwave Suite":
https://www.scientificsounds.com/store/relaxation

Here are some threads on binaural beats:
https://forums.phoenixrising.me/thr...ound-therapy-to-reregulate-brain-waves.62866/
https://forums.phoenixrising.me/threads/trouble-meditating-try-binaural-beats.33436/
https://forums.phoenixrising.me/threads/binaural-beats-app-android-free-helping-with-sleep.79480/

Hope this helps.

 

[kangaSue]

I wonder how the vibrator option is going @kangaSue ?

I found applying the bullet vibrator to either of the acupressure spots as suggested for the Apollo device got to be too intense after a couple of days use because I couldn't dampen the vibrations down enough without making it too cumbersome to 'wear' discretely, and probably a frequency issue with it too in not being able to reduce the speed of it either. It does have some effect for my abdominal pain just being in contact with the lower abdomen though, but it's also a nuisance at the same time which probably does nothing to help with heart rate variability.

Still thinking there was some merit in it but not being sure if an Apollo (or maybe even Doppel) is worth investing in, I got another 'device' (long story, don't ask) that has a variable speed control so can be turned right down to be outputting just barely perceptible vibrations, and this is proving to be quite beneficial when either bound to the ankle or just sitting on my lower abdomen, but only while it's running. It's much more phallus-like though so even less able to be used discretely in polite company.

Aside from being helpful for my upper abdominal pain, I do have a known issue with abnormal heart rate variabilty to deep breathing (I'm diagnosed with idiopathic Autonomic Neuropathy), and while I don't have a means to measure if there has been any change in heart rate variability, in taking my bp (which is always low anyway), there has been a small improvement in the systolic number on several of the occasions that I have taken it when the device has been running for a couple of hours, not a consistent overall bp improvement though.

I don't sweat properly either (because of Autonomic Neuropathy) and I had been wracking my brain in the last week trying to work out what I was taking that was making me sweat more, and just twigged yesterday that maybe it could be related to this vibration therapy too (which I've been doing for at least one hour daily (at the very least) for the last 18 days).

If nothing else, this is worth it for the abdominal pain improvement alone, but that benefit is easily lost or just not attainable on some days where my GI system decides to play up regardless.

 

[junkcrap50]

while I don't have a means to measure if there has been any change in heart rate variability,

There are several free iphone apps that can measure your HRV using the phone's camera and flash light by holding your finger over both the lens and light. . I don't how accurate it is, but it's free!