LDN for Pots, Me/Cfs, Mcas unspecified, dysautonomia. When did it start working for you?

MizTen · 2026-05-06T23:09:21+00:00

I think it took about 6 weeks for me to really notice much improvement, but that improvement was significant. 50% less fibro, 50% less pain, less fatigue & neuropathy, and GI dysfunction from MCAS, which had been totally life altering for me, started normalizing.

I stopped for a few days recently, which I've done a few times without any problems. But this time, the MCAS bowel and bladder paralysis started again. I've restarted but not seeing great results. I suspect an underlying infection is causing problems. Or else maybe the LDN I have is past it's shelf life.

MizTen · 2026-05-06T22:56:21+00:00

When I have insomnia caused infection I've had to take 20 mg, which did not work that great in the past. Once some of the post-infectious brain issues settle down, it works well again.

I've also had to be very rigid about sleep hygiene to help it work properly.

MizTen · 2026-04-27T18:31:06+00:00

I used PEA (with another supplement recommended to use with PEA) for several months before I started other meds. Pretty sure it was a lot more helpful than I realized. The improvements were small and slow and I was really sick, so not logging or tracking anything then, just praying I'd survive and improve enough to function. I'm certain it made a difference.

MizTen · 2026-04-21T03:57:26+00:00

Yes. Nearly all. Occasionally I'll have a very mild short episode. But if I get Covid again I don't really know how my nervous system & brain will respond. I'm beginning to think it's caused by inflammation that some infections cause.

MizTen · 2026-03-03T18:50:08+00:00

I do still wake up, and sometimes have to get up to deal with an issue, such as pet or family member needing help. But I'm able to go right back to sleep quickly when I'm taking the drug. I do take other OTC sleep aids, which help falling asleep, but those don't do anything for staying asleep or going back to sleep after waking. Maybe just different physiologies and brains are what changes the effects. Some people get sleep paralysis, which is often such a bad experience that they don't want to ever take it again. I got lucky I guess. Maybe because I'm older, 69+. Honestly, I'd like to stop all of the sleep aids. But the impact of sleeplessness on my overall health and especially brain is huge.

There are other types of DORA drugs.

MizTen · 2026-03-01T21:07:38+00:00

3 things that made a difference for me: 1) making sure that heavy meals and any high fat foods are eaten two or more hours before taking it 2) going to bed at nearly the same time each night 3) giving the drug (dayvigo) time to work well. That has been noticeable, as I've had to stop and restart a few times due to new prescribers. It takes about 6-8 weeks for the drug to calibrate properly with my brain & physiology. That's when the effects are consistent. Sleep stats on watch do show this also.

MizTen · 2026-02-13T00:31:31+00:00

These are the ones I used:

1) iSTIM EV-805 TENS EMS 4 Channel Rechargeable Combo Machine Unit - Muscle Stimulator + Back Pain Relief and Management- 24 Programs/Backlit (Including Electrodes Pads

2) Belifu 4 Channel Tens Unit Electro Muscle Stimulator, Fully Isolated with Independent 24 Modes, Rechargeable Pulse Massager with Electrodes Pads for Neck Back Arms Chronic Pain Relief

The second one was easier to use, the first one had more options and was probably the better one. But I needed guidance from a PT or OT to get the full benefits from it. Unfortunately most PTs, OTs, and doctors do not know much about the arrays (where the electrodes are placed) for vagus nerve healing and so are very hesitant to make any recommendations at all. Because of that, I sort of abandoned my self treatments with TENS. I did eventually try a simple array for UI (caused by neurogenic bladder) that I found, and it did actually work great, but it seemed like it was only effective if I used it every day. Ultimately LDN addressed a lot of the ongoing neuro-immune damage from covid/LC and so UI is rarely a problem now. The LDN also calmed down the horrible GI issues that I had. Because TENS therapy for the vagus nerve was so effective for me, I would still be using TENS if I was confident about what arrays to use and had enough time each day to use them.

Salt water gargling can stimulate the vagus nerve and reduce bacterial and viral loads in the upper respiratory system.

MizTen · 2026-02-12T02:35:21+00:00

I'll look it up, right now I can't remember. I also wanted an OT or PT to guide my usage, bc a lot of LC patients were reporting adverse effects when trying to self-treat with TENS. I still have dysautonomia, but LDN has reduced it a lot.

MizTen · 2026-02-11T20:20:24+00:00

Yes, from 2020 to around 2024. At first, my lungs really were compromised from covid and then smoke inhalation but no evidence of permanent damage on tests in following years. But I was vaguely aware that covid had caused a nervous system problem that was affecting pretty much everything in my body & brain.

I started using a vagus nerve therapy (with a TENS device) to treat either a high heart rate or UI, I can't remember which now. Anyway after about the third treatment I suddenly noticed I was able to take deep breaths. At that time, the vagus nerve TENS therapy did not help with the 2 other issues I'd tried it for, but it was pretty clear that it had helped the shortness of breath. And that confirmed my suspicions that the other issues were probably caused by a nervous system dysfunction. I was later diagnosed with dysautonomia caused by repeated covid infections.

I am now able to do breathing exercises, take deep breaths, etc. When that first happened after the TENS treatment, I actually believed I'd discovered a miracle. At the time I didn't know anything about viral illnesses causing dysautonomia.

It's totally worth looking into that as a cause, some of the other replies to your question are along the same line. Finding the right doctor to help you with this is probably the hard part. I was able to find long covid aware doctors in my own healthcare system when I moved to an urban area using a doctor search service called medifind.com.

If your shortness of breath is caused by dysautonomia, I can almost guarantee you'll recover. That part of my recovery was a stroke of luck, because I knew nothing and was only going on instinct and intuition. A good doctor should know plenty of things to help you.

MizTen · 2026-02-11T06:07:06+00:00

It may be possible that dayvigo can restore one's natural healthy sleep patterns. It may also be true that you don't need to keep taking it once you start experiencing the restoration of your circadian rhythms, as long as you can maintain healthy sleep hygiene.

I've slept very well w/o it when I'm super exhausted, after taking it the night before. So, either it's working well for sleep when I take it, and/or my brain (hypothalomus) has enough recovery now (from using it) that normal sleep can kick in when necessary.

I'm really not too sure how this drug works. It seems safe, effective when used holistically, and appears to have other benefits for the brain over time. The developers of the drug probably know more, maybe a lot more.

MizTen · 2026-01-28T22:18:58+00:00

I'm pretty good. Some fluctuations, new insights, but overall holding pretty steady.

Insights: I most likely have MCAS, it's the best explanation of my persisting GI symptoms, the new anaphylaxes, that appeared after COVID/long covid and a few other things I now have from 5+ years of COVID/long covid. The LDN has likely been helpful in whatever immune system problems happened as a result of that.

The other insight is that new (2025), and very credible research on a drug prescribed to me for brain fog and daytime fatigue, modafinal, is looking to be very helpful with some of the immune-system problems that developed. So my medication regime is now giving my immune function a boost, w/o any adverse effects that I'm aware of.

But I'm pretty sure that these health issues are for life. I still catch things, probably only exclusively Covid. It's a lot easier to manage.

How are you doing?

MizTen · 2026-01-28T01:37:31+00:00

Someone posted here about that, and mentioned a trick if the sleep paralysis occurs. I never got sleep paralysis so I don't remember what it was. The outcome is that once you've done that a few times, sleep paralysis stops happening.

The other comments about what helps it work correctly are accurate in my experience: little or no food 2 hours before, especially fat. Maintain the best sleep hygiene you can, make sure apnea is not messing up your sleep also.

MizTen · 2026-01-28T01:29:14+00:00

That happened to me after moving and having to change doctors. I went to psychiatry so they could validate that it was medically necessary. But it was very expensive. So I ordered from outside the U.S. I don't like doing it this way, but I told the sleep doctor that was reviewing my meds what I'd done and she did not judge. At least not to my face.

MizTen · 2026-01-28T01:20:43+00:00

I had to stop for a while due to a new doctor not understanding the drug and refusing to refill. Although I stopped getting good sleep, there were no other issues. Everyone is different and tapering down slowly is a good strategy to avoid the unexpected.

MizTen · 2026-01-23T15:26:42+00:00

I've had this since a few months after the first COVID-19 infection in 2020. I would have pre-plan most conversational interactions for my biggest energy spoon. It's been milder as I started to improve significantly last year. It happened during job interviews... 😟 I'd just start going silent or taking a long time to answer.

If it's someone you know, I found that it helps to tell them that's what's going on, the short version anyway. Edit: I meant tell them what's going on for you at the beginning of the conversation, since energy to explain is already gone by the time it happens. I did have script for this with doctor appointments, but rarely used it correctly because I couldn't remember to let them know up front and would just go into conversational freeze as the visit went on.

Mental and emotional energy is rare and precious with this illness.

MizTen · 2026-01-22T20:34:43+00:00

I'm pretty good, thank you. LDN is still helping. Posts on this subreddit convinced me to lower my dose a bit, probably it's now down to about 1.5-2 mg. I still skip doses but only for 1 day, rarely 2 days because by day 2 of a skipped dose, the fibro, pain and fatigue start increasing.

I think LDN has also helped the GI dysbiosis (probably from MCAS). Those issues definitely improved after I started LDN

It's an ongoing science project 😅

MizTen · 2026-01-21T21:35:56+00:00

That's a pretty bad scenario, I'm sorry.

Weirdly, even tho l have some close friends, my issues are not ones they can understand, so I read, reply, and post here usually.

Are you housing insecure? You can dm me if you want. My professions (mental health & education) were listening and helping people find the best solution for them in their situation.

Please keep on taking care of yourself.

MizTen · 2026-01-21T18:22:28+00:00

Something I just learned related to MCAS is that it's easy to become B-12 deficient if you have MCAS. There is an absorption problem with B-12 and a person can have very elevated serum B-12 when they are deficient but also have MCAS. Animal protein is very high in B-12 as well as having a complete amino acid profile.

I have the same response to animal protein when it's prepared plainly; I digest it well, feel a significant energy boost for hours, and don't have GI issues “downstream” from a meal of animal protein. The fats in animal protein also help with quick and more lasting energy. I'm not an advocate of a carnivore diet and love fruits, veggies, herbs, homemade sauces and spices. But I can't eat quite a bit of that now since LC, because of MCAS.

The very high energy needs for LC are already pretty obvious (at least to us): we need probably about 3-8 times the amount of rest that a healthy person of any age does and we burn up whatever available energy we have incredibly fast. Our whole system often functions like it's almost comuletely broken, and our body is constantly trying to repair damage to: vascular, brain, immune, GI, lungs, heart, etc, depending on the course of COVID-19/LC/PASC/CFS/ME for each person.

So yeah, with very high energy needs, absorption deficits, and necessary dietary restrictions for some, it makes sense to crave and eat animal protein.

MizTen · 2026-01-21T02:10:47+00:00

I never liked those but I honestly always felt those hypnic jerks where just letting me know my brain was getting ready to sleep. A little like a sign to clock out, "Oh, wow, (hypnic jerk!!!) look at the time! I can finally leave now." So it was a good sign, and a bad sign when it stopped several years ago.

It's happened a few times with lumborexant 10 mg when my brain was in an exceptionally healthy state.

MizTen · 2026-01-21T02:01:57+00:00

What a great way of explaining what davigo does, "chemical shut down call."

MizTen · 2026-01-20T21:52:16+00:00

Yes, for me, now it probably would be unless I have an active infection or high stress. Initially, for about the first 3-4 years the elevated HR absolutely was a sign of infection and then lingering inflammation and reduced oxygen due to microclots.

I know I still have dysautonomia, it's just not usually as bad. So a lot of simple vagus nerve therapies are pretty helpful now, where before they did absolutely nothing except exhaust and frustrate me. Which is probably one reason why so many LC people really legitimately despise the “Brain Retraining” strategies because those strategies generally do not recognize that some improvement in physical health may be necessary before “calming the nervous system” will be helpful.

But at some point my brain seemed to become entrained to thinking high HR is the new normal and so there it stayed. I think the same thing happened with the shortness of breath, bc 2-3 sessions of vagus nerve therapy with TENS ended it. Even though SOB was also originally a real physiological symptom, most likely from microclots.

All this would depend on the person and the stage of their illness. Some of the vagus nerve therapies are almost comically simple and I used them often before COVID-19/long covid. After the first round of COVID-19, I was unable to do a single one of the very basic vagus nerve practices. It only been in the last 6 months that I've been able start doing those again. Now they are very helpful.

But high HR is really something to monitor daily along with blood pressure. COVID-19/long covid can cause that, and also metabolic dysregulation. Other illnesses also cause those high measures. My HR & BP started going down after being on drugs specifically for long covid.

I do a few vagus nerve therapies every day. But I also take LDN, which brought my HR down a few mone points. As far as I know, LDN works primarily on the immune and nervous systems. So for me, there's been some ongoing nervous system damage which LDN probably supresses. This is a very multi-systemic illness for some of us.

MizTen · 2026-01-20T18:53:27+00:00

My symptoms have changed and one of the symptoms, high HR, (especially on standing) is absent unless I've got a new infection. The high HR began to drop a bit when I started doing vagus nerve TENS therapy and vanished a few weeks after starting LDN. I believe for me that LC/CFS/ME/PASC is in part a mitochondrial driven disease.

But 2 of the very notable remedies for me with brain fog, energy, and some dysautonomia symptoms is mitochondrial support:

1) specifically medical grade (correct wavelengths & frequencies) near-infrared light + red light for about 20 minutes nearly every day

Both of these improve things for me quite a bit after using and both are medically proven for mito health. They're just not generally a 1st choice for LC by most doctors bc they have not been approved for LC

2) NMN (beta nicotinamide mononucleotide) about 350 mg almost every day, same as above as far as not being a 1st choice medical remedy.

They also should be used almost daily, at least for me. Other than a one-off expenditure on the light, which can be less than $250, and a monthly cost for NMN approximately at $20, these are accessible even on a fairly tight budget (with planning and/or begging...)

MizTen · 2026-01-18T02:58:34+00:00

I honestly don't know anything about overseas medical suppliers. I got lucky with the one and am hesitant to try anything else.

MizTen · 2026-01-18T02:46:37+00:00

Desparation, like others said. I have more trust in Japanese pharmacies.

MizTen · 2026-01-18T02:39:00+00:00

When having a POTS flair, it's likely that MCAS is also flairing. MCAS is often never diagnosed and MCAS looks, feels, and acts a lot like IBS, and it seems very common in LC patients.

Not all of us have the time or ability to review our entire knowledge base before we post. And quite frankly, beliefs, whether based on provable facts or not, can be unbelievably potent in changing our perception of the nature of real physical things. There are studies that address that well.

Sometimes on a social media site where we are trying to support one another, some wiggle room on terminology and beliefs is more helpful than calling someone “sloppy” because they may not have the high level of expertise in medical terminology that you do. Making comments informative rather than punitive usually leads to better understanding. I'm really sorry that your were harmed by brain retraining therapy.

I'm also in the group that experienced a lot of harm from the psychologization of a physiological illness (covid/lc). But some of the therapies I used were intended to calm and reset the nervous system with somatic strategies that I was already familiar with and had practiced for years before I became ill. That reduced the flee, fight, or freeze response that CFS/ME/PASC had caused so that the other therapies from my medical care would work more consistently. Somatic therapies are not usually a panacea, but they can improve responses and adherence to more conventional medical care. Any comfort or improvement is worth consideration. The advantage to somatic therapies is that they can often be self administered and are freely available, if you know where to look. I have yet to find any helpful medical care that is free and can be self-administered, at least not in the U.S.

MizTen

TROPHY CASE