u/EAUDHD

Hi everyone,

I am writing on behalf of my partner who has ME/CFS. We are considering looking into a very low dose of Fluvoxamine to see if it could help with his symptoms. Like many with this condition, my partner is extremely drug sensitive, which is why we want to look into starting significantly below the standard therapeutic dose. He has CYP2D6*10 reduced metabolism, so the medication will accumulate in his body more than normal.

I know Fluvoxamine is sometimes discussed in relation to neuroinflammation, but we are very cautious and concerned about triggering a severe crash or worsening their post-exertional malaise. We would love to hear if anyone here with ME/CFS, or your partners, have tried Fluvoxamine at very low levels. We are especially interested in knowing how the body reacted initially, if it caused any central nervous system activation like insomnia or jitteriness, and whether it ended up helping with any specific symptoms or causing a setback.

Thank you so much for your help and insights.

Hi everyone!

I am a 33-year-old female, and I am currently 4 weeks into a massive, terrifying autonomic crash that has left me completely bedridden.

I have a lifelong history of hypermobility, low blood pressure, SIBO (havent been active for 6 months), and MCAS. For the past 3 years, I took Guanfacine (Intuniv) for ADHD-related emotional dysregulation, which masked my underlying circulatory issues. A month ago, I decreased my dose, did a short walk, and my system completely collapsed into severe hyperadrenergic POTS episode.

Right now, my blood pressure drops, my body vibrates with internal electrical tremors, my arms constantly fall asleep, and I get hit with severe adrenaline surges and "freeze" states

I want to emphasize that I am certain I do not have ME/CFS. My partner suffers from ME/CFS, so I know exactly what it looks like. My crash is strictly mechanical and circulatory-my blood vessels are too compliant hypermobility, and my brain panics from a lack of oxygen when I try to move, triggering an adrenaline storm.

I am currently taking a sub-therapeutic micro-dose (12.5mg) of Fluvoxamin (Dumirox) for its anti-inflammatory Sigma-1 effect, which has helped my brain clarity immensely (only on day 2 but i can feel a difference), and Pepcid for my histamine issues.Also eating low histamine. I also have official referrals to a neurologist and cardiologist here in Denmark, and a meeting with US specialists next week to start looking at the MCAS im experiencing.

Even though I understand the biology, being stuck in bed has left me in absolute terror that I have permanently lost my mobility or ruined my nerves. I am so scared I will never be able to live a semi-normal life again.

Has anyone else with hypermobility, HyperPOTS, and MCAS been completely bedridden, unable to stand, and managed to get their mobility and function back? Did getting the right blood pressure support finally shut down the adrenaline and get you out of bed ?

I really need to hear your success stories today. Thank you so much ❤️

Hi everyone,
I’ve taken Guanfacine for 3 years, and it has been great for my ADHD. However, my normal dose now make me kind of sluggish and depressed. Because of this, and suspecting dysautonomia due to low blood pressure, I recently lowered my dose with my doctor.

Note: I am not officially diagnosed with POTS or dysautonomia yet.

The lower dose gave my brain energy, but my body is in a massive adrenaline rebound. I have severe palpitations and anxiety, and I'm now almost bedridden. I had 2 days with constant hearth palpitations and a sense of doom (thoughts about dying and my familie getting hurt, and helplessness) after pushing through for too many days in a row. And when my boyfriend gave me some coconutwater with salt, i had a massive relief in symptoms. I realize now that my low mood and anxiety are deeply connected to these adrenaline spikes, but Guanfacine has concealed this for 3 years by suppressing my nervous system. Before this, I already struggled with standing up for long - for a long time I thought I had MECFS (my boyfriend have it) but i didn’t have the flu-like PEM symptoms, just massive fatigue and more and more trouble walking around without getting really.. anxious and having intense coat-hanger pain.

Questions:

Has anyone experienced this severe adrenaline rebound when lowering Guanfacine? How long did it last?

Could Guanfacine have masked severe POTS/dysautonomia all this time, even if I'm not diagnosed yet?
Any tips to calm these physical adrenaline surges from bed?

I am in touch with my doctor, but I’m terrified and feel very isolated right now - my nervous system feel like it’s broken and I tried Memantine for OCD two months ago, and it sent me into a whole month with akathisia which was horrible.

I would love to hear if anyone else out there has had a similar experience:

For the past six months I’ve been taking oral cromolyn sodium the traditional way, about 30 minutes before meals, for my MCAS symptoms, and it has definitely helped, buuuut three days ago I decided to try something different.

Because I’m using the powder from a pharmacy in Germany instead of the liquid vials that many people in the US use, I can divide it into much smaller doses, and over the past three days I’ve been taking a small amount whenever I notice that familiar intrusive thought combined with an adrenaline anxiety surge. I probably end up taking it around 8-10 times throughout the day in very small doses, and the results have honestly surprised me.

I’ve had OCD my whole life, and I also have mild MCAS symptoms. My OCD has always felt like it falls into two different categories. One is the more obsessive part, where I get stuck ruminating on thoughts for a long time. The other is completely different. Those intrusive thoughts come out of nowhere, almost like lightning, and instantly flash into my mind. They can be images of self-harm or someone suddenly dying right in front of me. They don’t gradually build up-they just suddenly “click” into my awareness. It feels like a sudden jumpscare in the chest, and are followed by adrenaline. Often followed by rumination, but not always.

Over the past three days I’ve noticed that whenever I feel one of those adrenaline surges starting, together with the sudden intrusive thoughts, stress, and that feeling of my nervous system ramping up, taking a small dose of cromolyn seems to make it stop. I’m not talking about the obsessive rumination that lasts for hours or days, but those immediate, lightning-fast intrusive thoughts that seem to appear out of nowhere. Im aware that this COULD be an compulsion, but it feels.. kind of not like one?

It has also helped with my heart palpitations, anxiety, panic attacks, and even episodes that almost felt mildly manic. I’ve also noticed that cromolyn seems to improve my PMDD symptoms.

At this point I honestly just want to understand what is going on! I’ve lived with OCD my entire life, and I know mast cells are found throughout the body, including around the nervous system, so I can’t help wondering why psychiatrists don’t seem to know more about this possible connection.

Because of this experience I’ve now also ordered Pollicrom(cromolyn sodium nasal spray) to see whether it has any systemic effect similar to oral cromolyn. I also have quite a bit of mucus in my throat and nose, so I’m hoping it might help with that as well.

Has anyone else experienced something similar? Especially improvement in intrusive thoughts, OCD, anxiety, adrenaline surges, or panic from cromolyn sodium? And if you’ve tried the nasal spray, did you notice any systemic effects, or did it only help your nasal symptoms?

I´ve tried everything for my OCD, from ERP, ACT, CBD, i-CBD, Meta cognitive therapy, DBT, hypnosis, EMDR, Somatic experiencing, IFS, SSRI`s, Abilify (actually helped but gave me akathisia) , Lamictal, Memantine, NAC, L-Theanine, Lemon Balm, KPV peptide (also helped, but had an allergic reaction), Low dose Monjaru, LDN, Elvanse (made it so much worse), Ritalin (made me manic, and yeah, i also have ADHD) and Ketotifen....

AND NOW THIS WORKS... like A LOT!?!?

again, would love to hear your experiences !

I found this conversation about some of the same topics https://www.reddit.com/r/MCAS/s/I4JJ71wXiG

Really want the antiinflammtory effects. Do anyone experienced this? And maybe solved it? :)

I promised myself that I would come back to this forum if I ever figured out what could cure the hydrogen SIBO that I’ve probably had for the last 5-6 years, but which was finally diagnosed in July 2025 - im now 6 month SIBO free (kind of).

Symptoms:

I had been struggling with stomach problems for a long time. Bloating, constipation, a couple of episodes of food poisoning, and periods of malnutrition all seemed to make everything worse. Around the same time that I had the “feeling” of having SIBO, I also started having trouble digesting fatty foods. For example, if I ate ice cream, I would get nausea, burping, and a really uncomfortable pressure in my chest. I assumed it had something to do with the fact that I had bulimia when I was younger.

After a COVID-19 infection in 2021, I began developing food intolerances, allergic reactions, asthma, mucus in my throat and nose, and what felt like histamine reactions both after eating and at random times during the day. Suddenly I could only tolerate a very small number of foods, and my life became extremely difficult to live.

Because of my OCD, I decided to try NAC (N-acetylcysteine) for a few weeks. As my gut problems worsened, my mental health also deteriorated. Even though NAC helped my OCD and overthinking tremendously, my histamine symptoms became significantly worse. Fortunately, I quickly found out that NAC can worsen histamine intolerance because it can prompt mast cells to release stored histamine and may inhibit diamine oxidase (DAO), the primary enzyme responsible for breaking down histamine.

Healing:

This was when I first came across the concept of histamine intolerance and quickly got hold of some antihistamines. It wasn’t until I discovered PEPCID (famotidine) that I experienced a level of calm that I hadn’t felt in years, after my body had gradually been feeling worse and worse over time. Histamine issues feel like torture inside your body - I imagine most of you already know exactly what I mean.

It was also around this time that I learned that long-term use of PEPCID/famotidine can potentially worsen SIBO. But it was the only thing that gave me any real relief.

I switched to a low-histamine diet and started taking NaturDAO before every meal. However, there was still something inconsistent about when my histamine reactions would appear in relation to eating.

My gastroenterologist ordered a breath test, which came back positive for hydrogen SIBO. I then completed a 14-day course of rifaximin (I’m from Denmark, where fortunately the medication isn’t very expensive). During those 14 days, I experienced a level of calm throughout my body that I hadn’t felt for several years-very similar to what I had experienced with PEPCID/famotidine.

Unfortunately, about two months later, the histamine sensations slowly started creeping back. I also felt that the rifaximin had been quite hard on my system, so I didn’t really want to do another round. I wanted to understand what was actually causing my SIBO, even though I felt overwhelmed and terrified that it would never go away.

I should also mention that I’ve been incredibly fortunate to not have had to work during these years. Solving this medical puzzle has honestly been a full-time job, as I’m sure many of you can relate to.

I bought some zeolite powder, and I noticed a calming effect almost immediately. Research suggests that zeolite can physically bind histamine molecules in the gut. By binding histamine, it prevents it from being absorbed into the bloodstream and instead allows it to be eliminated in the stool. It also appeared to have some benefits for the gut barrier, so it felt like a win-win. The only downside was that it made me a little constipated, but it was manageable.

I later had a stool test which showed that I wasn’t producing enough bile. Trigger warning for stool descriptions: my stool was often pale and lacked much fiber, even though I ate plenty of vegetables.

My functional medicine practitioner suggested eating bitter foods like arugula, dandelion greens, and chicory to stimulate bile production. Together with turmeric and artichoke, this helped my motility a little, but not enough to eliminate the histamine reactions.

Around this time I came across Yggdrasil Naturopathic on TikTok and started following their videos about SIBO, histamine intolerance, MCAS, and how important gut motility is in managing SIBO.

At the same time, I had a methylation DNA test because I was also desperately trying to understand the OCD, anxiety, and overstimulation that I’ve lived with for years. I discovered that I have an MTHFD1 variant associated with an increased requirement for choline.

As I started reading more about MTHFD1, I learned that choline is required to produce phosphatidylcholine, one of the major components of bile. That led me down the rabbit hole of reading about bile; not only its role in fat digestion, but also its importance as one of the body’s natural defenses against bacterial overgrowth in the small intestine, in other words, SIBO. Bile acids have natural antibacterial properties, so impaired bile function can both reduce fat digestion and create a better environment for bacteria to survive and multiply in the small intestine.

I quickly bought some TUDCA, and I experienced a significant improvement in both my SIBO symptoms and my histamine-related symptoms. That was when I realized that my increased need for choline and my reduced bile function had probably been an overlooked contributing factor in my illness.

I also tried ox bile, but unfortunately it caused quite a bit of stomach pain and irritation.

My next purchase was sunflower lecithin powder (5-7 grams per day). Lecithin is a rich source of phosphatidylcholine, the primary dietary form of choline. I chose the powder because I simply couldn’t afford, or fit into my stomach, the number of eggs it would take to meet my choline requirements!

After just a few days, I noticed that my stomach suddenly relaxed (something I honestly don’t think it had ever really done before), and I felt a sense of “clarity” throughout my digestive system. It was an incredible feeling and gave me a very clear sign that increasing my choline intake and supporting my bile production was the right direction for me.

----

And the reason I wrote “kind of” in the title is because yesterday I had a pretty severe histamine flare after being SIBO free for months now. It happened after spending a few days visiting friends and forgetting to bring my TUDCA. So the SIBO must have started becoming active again - but! Today it’s gone again because I’ve taken the TUDCA and eating less fat.

That said, I don’t believe SIBO is caused by choline deficiency alone. SIBO is usually multifactorial. Motility disorders, autonomic dysfunction, anatomy, and many other factors can all contribute.

I am hypermobile, which I know can impair gut motility because the connective tissue in the intestines is more lax. I also have ADHD, OCD, and some form of dysautonomia, which results in an overactive nervous system that affects both gut motility and digestion. Those factors almost certainly play a role as well.

In addition, I’ve been diagnosed with MCAS. I’m hoping that this will gradually improve over the coming months now that I seem to be keeping the SIBO under much better control. It’s also possible that MCAS has been making everything much worse, meaning I have yet another medical puzzle to solve- but time will tell.

I don’t think I’ll ever truly “get rid of” SIBO, but I finally feel like I’ve identified one of the major underlying mechanisms in my own case. That gives me a powerful tool to prevent myself from living with active SIBO all the time.

I hope this can help someone else, because I know firsthand how awful it is to live with SIBO.

Products used:

- PEPCID (Famotidine) – 10–30 mg daily

- Rifaximin - 200 mg with each meal for 14 days (helped temporarily, but wasn’t the best long-term solution for me)

- Zeolith MED Detox Powder (zeolite powder)

- Ginger capsules - 550 mg

- Schönenberger Organic Artichoke Juice

- TUDCA - 500 mg with each meal during the first month (now only with dinner)

- Sunflower lecithin powder - 5-7 g per day

- NaturDAO + low-histamine diet (used together throughout much of my recovery)

- Bitter foods to stimulate bile flow: Arugula , Dandelion greens, Chicory

- Turmeric (to support bile flow and motility)

TL;DR

I probably had hydrogen SIBO for 5-6 years, along with severe histamine intolerance, MCAS-like symptoms, food intolerances, and poor fat digestion. Rifaximin helped temporarily, but the symptoms returned. After discovering through a methylation DNA test that I have an MTHFD1 variant associated with an increased need for choline, I learned how essential choline is for producing phosphatidylcholine and healthy bile flow. Since bile acids have natural antibacterial properties and are important for preventing bacterial overgrowth in the small intestine, I started supporting bile production with TUDCA and sunflower lecithin (phosphatidylcholine). That has given me the biggest improvement I’ve experienced in years. I don’t think choline deficiency is the sole cause of SIBO. It’s usually multifactorial-but in my case, impaired bile function appears to have been one of the major missing pieces.

I promised myself that I would come back to this forum if I ever figured out what could cure the hydrogen SIBO that I’ve probably had for the last 5-6 years, but which was finally diagnosed in July 2025 - im now 6 month SIBO free (kind of).

Symptoms:

I had been struggling with stomach problems for a long time. Bloating, constipation, a couple of episodes of food poisoning, and periods of malnutrition all seemed to make everything worse. Around the same time that I had the “feeling” of having SIBO, I also started having trouble digesting fatty foods. For example, if I ate ice cream, I would get nausea, burping, and a really uncomfortable pressure in my chest. I assumed it had something to do with the fact that I had bulimia when I was younger.

After a COVID-19 infection in 2021, I began developing food intolerances, allergic reactions, asthma, mucus in my throat and nose, and what felt like histamine reactions both after eating and at random times during the day. Suddenly I could only tolerate a very small number of foods, and my life became extremely difficult to live.

Because of my OCD, I decided to try NAC (N-acetylcysteine) for a few weeks. As my gut problems worsened, my mental health also deteriorated. Even though NAC helped my OCD and overthinking tremendously, my histamine symptoms became significantly worse. Fortunately, I quickly found out that NAC can worsen histamine intolerance because it can prompt mast cells to release stored histamine and may inhibit diamine oxidase (DAO), the primary enzyme responsible for breaking down histamine.

Healing:

This was when I first came across the concept of histamine intolerance and quickly got hold of some antihistamines. It wasn’t until I discovered PEPCID (famotidine) that I experienced a level of calm that I hadn’t felt in years, after my body had gradually been feeling worse and worse over time. Histamine issues feel like torture inside your body - I imagine most of you already know exactly what I mean.

It was also around this time that I learned that long-term use of PEPCID/famotidine can potentially worsen SIBO. But it was the only thing that gave me any real relief.

I switched to a low-histamine diet and started taking NaturDAO before every meal. However, there was still something inconsistent about when my histamine reactions would appear in relation to eating.

My gastroenterologist ordered a breath test, which came back positive for hydrogen SIBO. I then completed a 14-day course of rifaximin (I’m from Denmark, where fortunately the medication isn’t very expensive). During those 14 days, I experienced a level of calm throughout my body that I hadn’t felt for several years-very similar to what I had experienced with PEPCID/famotidine.

Unfortunately, about two months later, the histamine sensations slowly started creeping back. I also felt that the rifaximin had been quite hard on my system, so I didn’t really want to do another round. I wanted to understand what was actually causing my SIBO, even though I felt overwhelmed and terrified that it would never go away.

I should also mention that I’ve been incredibly fortunate to not have had to work during these years. Solving this medical puzzle has honestly been a full-time job, as I’m sure many of you can relate to.

I bought some zeolite powder, and I noticed a calming effect almost immediately. Research suggests that zeolite can physically bind histamine molecules in the gut. By binding histamine, it prevents it from being absorbed into the bloodstream and instead allows it to be eliminated in the stool. It also appeared to have some benefits for the gut barrier, so it felt like a win-win. The only downside was that it made me a little constipated, but it was manageable.

I later had a stool test which showed that I wasn’t producing enough bile. Trigger warning for stool descriptions: my stool was often pale and lacked much fiber, even though I ate plenty of vegetables.

My functional medicine practitioner suggested eating bitter foods like arugula, dandelion greens, and chicory to stimulate bile production. Together with turmeric and artichoke, this helped my motility a little, but not enough to eliminate the histamine reactions.

Around this time I came across Yggdrasil Naturopathic on TikTok and started following their videos about SIBO, histamine intolerance, MCAS, and how important gut motility is in managing SIBO.

At the same time, I had a methylation DNA test because I was also desperately trying to understand the OCD, anxiety, and overstimulation that I’ve lived with for years. I discovered that I have an MTHFD1 variant associated with an increased requirement for choline.

As I started reading more about MTHFD1, I learned that choline is required to produce phosphatidylcholine, one of the major components of bile. That led me down the rabbit hole of reading about bile; not only its role in fat digestion, but also its importance as one of the body’s natural defenses against bacterial overgrowth in the small intestine, in other words, SIBO. Bile acids have natural antibacterial properties, so impaired bile function can both reduce fat digestion and create a better environment for bacteria to survive and multiply in the small intestine.

I quickly bought some TUDCA, and I experienced a significant improvement in both my SIBO symptoms and my histamine-related symptoms. That was when I realized that my increased need for choline and my reduced bile function had probably been an overlooked contributing factor in my illness.

I also tried ox bile, but unfortunately it caused quite a bit of stomach pain and irritation.

My next purchase was sunflower lecithin powder (5-7 grams per day). Lecithin is a rich source of phosphatidylcholine, the primary dietary form of choline. I chose the powder because I simply couldn’t afford, or fit into my stomach, the number of eggs it would take to meet my choline requirements!

After just a few days, I noticed that my stomach suddenly relaxed (something I honestly don’t think it had ever really done before), and I felt a sense of “clarity” throughout my digestive system. It was an incredible feeling and gave me a very clear sign that increasing my choline intake and supporting my bile production was the right direction for me.

----

And the reason I wrote “kind of” in the title is because yesterday I had a pretty severe histamine flare after being SIBO free for months now. It happened after spending a few days visiting friends and forgetting to bring my TUDCA. So the SIBO must have started becoming active again - but! Today it’s gone again because I’ve taken the TUDCA and eating less fat.

That said, I don’t believe SIBO is caused by choline deficiency alone. SIBO is usually multifactorial. Motility disorders, autonomic dysfunction, anatomy, and many other factors can all contribute.

I am hypermobile, which I know can impair gut motility because the connective tissue in the intestines is more lax. I also have ADHD, OCD, and some form of dysautonomia, which results in an overactive nervous system that affects both gut motility and digestion. Those factors almost certainly play a role as well.

In addition, I’ve been diagnosed with MCAS. I’m hoping that this will gradually improve over the coming months now that I seem to be keeping the SIBO under much better control. It’s also possible that MCAS has been making everything much worse, meaning I have yet another medical puzzle to solve- but time will tell.

I don’t think I’ll ever truly “get rid of” SIBO, but I finally feel like I’ve identified one of the major underlying mechanisms in my own case. That gives me a powerful tool to prevent myself from living with active SIBO all the time.

I hope this can help someone else, because I know firsthand how awful it is to live with SIBO.

Products used:

- PEPCID (Famotidine) – 10–30 mg daily

- Rifaximin – 200 mg with each meal for 14 days (helped temporarily, but wasn’t the best long-term solution for me)

- Zeolith MED Detox Powder (zeolite powder)

- Ginger capsules – 550 mg

- Schönenberger Organic Artichoke Juice

- TUDCA – 500 mg with each meal during the first month (now only with dinner)

- Sunflower lecithin powder – 5–7 g per day

- NaturDAO + low-histamine diet (used together throughout much of my recovery)

- Bitter foods to stimulate bile flow: Arugula (rocket), Dandelion greens, Chicory (endive)

- Turmeric (to support bile flow and motility)

TL;DR

I probably had hydrogen SIBO for 5-6 years, along with severe histamine intolerance, MCAS-like symptoms, food intolerances, and poor fat digestion. Rifaximin helped temporarily, but the symptoms returned. After discovering through a methylation DNA test that I have an MTHFD1 variant associated with an increased need for choline, I learned how essential choline is for producing phosphatidylcholine and healthy bile flow. Since bile acids have natural antibacterial properties and are important for preventing bacterial overgrowth in the small intestine, I started supporting bile production with TUDCA and sunflower lecithin (phosphatidylcholine). That has given me the biggest improvement I’ve experienced in years. I don’t think choline deficiency is the sole cause of SIBO. It’s usually multifactorial-but in my case, impaired bile function appears to have been one of the major missing pieces.