I think im just looking for some hope here. My dysautonomia never let's me sleep. As soon as I start drifting off I'm shot awake by a shot of adrenaline and it's just that way the whole night. I never sleep because of this. If we clear out the root problem of toxins, infections etc, this can go back to normal. Right?
Can dysautonomia be reversed?
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valentinelynx
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I believe some people who have had fusion surgery for craniocervical instability have experienced reversal of their dysautonomia. However, not everyone has had this benefit.
sb4
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@Aerose91 I had this at my worst and its brutal. Luckily I don't get it any more though I am sure you have tried all the same things as me.
ljimbo423
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I use to have this happen too. I would wake up with my heart pounding like it was coming through my chest. It still happens from time to time but it is much milder and I'm able to fall back asleep within minutes.
As I have improved my health, that symptom and many others are either gone or drastically improved. I improved by working on "very severe dysbiosis" found through testing and improving mitochondrial dysfunction.
I use to be severe, mostly bedridden, slept 16-18 hours a day, had PEM that would last for weeks at a time, etc. Now I do 6-7 hours a day of physical activity, my PEM never lasts more than 24 hours and only sleep 8 hours a night.
So in answer to your question, yes, by improving my severe gut dysbiosis and mitochondrial dysfunction. I have reduced the level of toxins in my body and reduced the immune system dysfunction, which I think is the root cause of my illness, caused largely by my gut.
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Pearshaped
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@Aerose91
it depends on the cause for your dysautonomia.
it depends on the cause for your dysautonomia.
Thats awesome, thanks for sharing. I've worked on my gut for many years but recently I linked up with a gut doctor and am going to work directly with her. I know I have dysbiosis and liver issues. I'm hoping this may be the ticket for me since methylation and treating lyme & bartonella didnt do it.
What did you do for mitochondrial function? Are you still seeing inprovements?
ljimbo423
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Treating gut dysbiosis is both a science and an art. The best experts will tell you they don't have anywhere near all the answers but will help you to find them through trial and error.
Fixing the gut is unique to each individual and therefore will require both someone's expertise and their wiliness to try different things when one something doesn't work.
Dr Michael Ruscio is a functional medicine doctor like this. He is an avid researcher but just uses that as a basic guide to treat his patients with gut and other issues.
I'm doing a lot!
Alpha Lipoic Acid, B-1, schisandra, BCAA's, high dose coq10, L-carnitine and maybe some others I can't remember off the top of my head.Yes. They are slow but I am still very slowly recovering my health. I can't tolerate high enough doses of herbs to clear the dysbiosis fast because I get a big increase in symptoms, primarily fatigue and flu-like symptoms. Which makes me feel absolutely miserable.
There are also things like improving my Migrating Motor Complex, that I haven't done yet. Which helps to clear bacteria from the small intestine and keep it in the large intestine, helping to reverse SIBO.
I don't really separate out disautonomy symptoms from my ME/CFS. But things like lightheadedness and dizziness when I stand up, heart-pounding when I stand up or walk up a flight of stairs. Have all improved to where they are very mild now or I hardly ever experience them.
ljimbo423
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@Aerose91 -
I'd just like to make two more points. First, I think gut dysbiosis is very often the cause of methylation issues. That's why the functional medicine doctors with the most experience in treating methylation issues, will treat any gut issues first. So fixing your gut should help, if not completely reverse any methylation issues you have.
This is an experience I've had that shows an incredible connection of gut dysbiosis (gut bacteria) and how powerful a connection they have to the brain.
I had really bad anxiety/panic attacks that started when I was about 14 years old. My heart would start beating so hard and fast that it felt like it was going to come out of my chest, my face would get beet red and I would start sweating. They were terrifying.
Cut to 44 years later, having these anxiety attacks regularly during this time. I took 2 courses of Rifaximin to treat SIBO, which only works in the small intestine and is not absorbed by the body.
After the 2 courses of Rifaximin my panic attacks were gone!! That was 3 years ago and they have never returned! So after 44 years of panic attacks, 2 courses of Rifaximin stopped them dead in their tracks!
That's one powerful connection of gut bacteria, causing symptoms in the brain. In this instance it was profound anxiety attacks. Gone now completely!!
I'd just like to make two more points. First, I think gut dysbiosis is very often the cause of methylation issues. That's why the functional medicine doctors with the most experience in treating methylation issues, will treat any gut issues first. So fixing your gut should help, if not completely reverse any methylation issues you have.
This is an experience I've had that shows an incredible connection of gut dysbiosis (gut bacteria) and how powerful a connection they have to the brain.
I had really bad anxiety/panic attacks that started when I was about 14 years old. My heart would start beating so hard and fast that it felt like it was going to come out of my chest, my face would get beet red and I would start sweating. They were terrifying.
Cut to 44 years later, having these anxiety attacks regularly during this time. I took 2 courses of Rifaximin to treat SIBO, which only works in the small intestine and is not absorbed by the body.
After the 2 courses of Rifaximin my panic attacks were gone!! That was 3 years ago and they have never returned! So after 44 years of panic attacks, 2 courses of Rifaximin stopped them dead in their tracks!
That's one powerful connection of gut bacteria, causing symptoms in the brain. In this instance it was profound anxiety attacks. Gone now completely!!
sb4
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@Aerose91 I have slowly improved over the last 4 years, I can't be sure exactly what has caused it but I am fairly confident the follow have been signficant factors:
Mirtazapine, Thiamine, Low Carb, Avoiding general pots triggers / stressors.
Mirtazapine, Thiamine, Low Carb, Avoiding general pots triggers / stressors.
@ljimbo423
Thanks for all the information. How long have you been treating now?
I def understand the connection between brain and gut. I have extremely bad derealization and both my doc and I believe its autoimmune. I know there is a connection between AI and leaky gut so I'm hoping really digging into gut healing, even more than I have, will be my savior
Thanks for all the information. How long have you been treating now?
I def understand the connection between brain and gut. I have extremely bad derealization and both my doc and I believe its autoimmune. I know there is a connection between AI and leaky gut so I'm hoping really digging into gut healing, even more than I have, will be my savior
ljimbo423
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You're welcome.
I've been treating my gut on and off for about 12-13 years. But the first 9-10 years, I did it half-heartedly, mainly for 2 reasons. First, I couldn't tolerate even small doses of herbs to kill the bacterial overgrowth, without getting too sick to function.
The second reason was that I still wasn't convinced it was my gut, at the core of my illness. So I was jumping around treating adrenal fatigue, mitochondrial dysfunction, taking antivirals for possible viral infections etc.
About 3 years ago, when I took the Rifaximin, that reduced the overgrowth of bacteria in my gut enough so I could take a much higher dose of herbs, without getting massive die-off symptoms.
That's when I got really serious and focused primarily on my gut. I feel very frustrated to have made such progress but can't increase my dose of herbs any higher to speed up my recovery, because the die-off symptoms become too much to handle.
I also might look into taking more supplements to help my liver to detoxify the toxins I'm creating by killing off the gut bacteria.
Hopefully your doctor will help guide you through any problems like this that come up in treating your gut.
Another thing that happened to me that help convince me that my gut was the root problem. Was when I went off the low carb diet I was on a few years ago and started eating 150-200 grams of carbs a day.
I went from hardly ever spending time in bed, to spending most of my days in bed, within 2 weeks!! VERY eye opening! Went back on the low carb diet and within days, I was no longer spending days in bed.
Learner1
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The CellTrend test found the antibodies causing my dysautonomia.
https://www.celltrend.de/en/pots-cfs-me-crps.html
Successful treatment has been a beta blocker, pyridostigmine or Huperzine A, IVIG, and finally, Rituximab. All have helped to different degrees.
Wow, that's some serious immuno therapy. Are you fully recovered?
sunshine44
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I have two friends that have reversed it (both had lyme and co infections). It definitely seems to be possible. Unfortunately what works for one person, doesn't the next etc. But its definintely possible.
@sunshine44 thank for the comment, I just needed to hear it today. Did they both clear it after treating infections? Unfortunately treating infections did nothing for me
sunshine44
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no, they did not. Thats the interesting part my one friend who lives by me and has been bedridden with lyme as well tried killing lyme and co infections for YEARS but only got worse. same with me. She has utilized calming her nervous system programs to get strong enough to do some gut healing protocols (gentle ones NO cleanses etc) and i know she is doing some other things too. She is now sitting up for car rides and can shower herself again standing and walk around, etc. Although she has a ways to go she is DEFINITELY getting better. My therapist was completely bedridden for the better part of 4 years and spent an entire year in a hospital unable to hold a fork, she now climbs mountains etc. Like she says she really doesn't even have any sign of it for the most part and it used to dominate her entire life. It does seem this stuff can go down or even disappear in some. I can't say it was any one thing for each of them but i know calming their nervous system was the first thing that started to unlock keys for them. Since this stuff seems to really be lodged in the nervous system.
sunshine44
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Also i should add my first friend i mentioned has not yet reversed it but is in the process of watching it go way way down.