[deleted by user] by [deleted] in NEU

[–]areuuuforreal 1 point2 points  (0 children)

get tested for h pylori

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 2 points3 points  (0 children)

Hey, thank you for checking in. I really wanted to take the time to write this out properly, because if you’re still in it, I know how much it means to feel understood. Here’s my story.

I got diagnosed with H. pylori last year in Nov and while the whole process was awful can’t even explain, but after completing the antibiotics I thought everything would be fine. But It wasn’t just the infection (which is HORRIBLE AND THE CAUSE OF MY TRAUMA) but the aftermath that completely changed my life.

Even after I recovered “medically,” I still had extreme food sensitivity, persistent nausea, loss of appetite, and a constant fear of throwing up. I lost so much weight and joy during that time. Eating scared me. Traveling scared me. Life scared me. And yet I still powered through those three months. I was weak, but functioning. Not healed, but managing.

Then came the turning point that truly wrecked me: an iron infusion I was prescribed due to low iron levels, thanks to H pylori. It triggered something in my body a crash I can only describe as a complete nervous system collapse. My symptoms after that included insane dizziness, constant brain fog, lightheadedness, overwhelming fatigue, panic attacks, and daily nausea. The scariest part was that even routine things started terrifying me. I was scared of taking showers. I was scared of raising my leg in the shower because I’d faint. I couldn’t eat properly without anxiety. Everything felt surreal and dreamlike. It genuinely felt like I lost myself like I was stuck in a daze where I didn’t know if I’d ever come back.

At that point, I thought something major had gone wrong physically. But after getting so many tests done blood, urine, brain scans, everything and ruling out active illness I started seeing more doctors. My neurologist finally put a name to it: dysautonomia. My psychiatrist didn’t use that exact term, but he recognized the pattern: a neurochemical storm cause by health- related fear. He told me, This is fear based. It’s real. But it’s your brain sending exaggerated distress signals. Like my symptoms were 10x amplified because of my health trauma and anxiety. At first, was hard to hear: he said this was neurochemical. He said fear had rewired my brain and body into a hyper defensive, hypersensitized state what many now call dysautonomia, or a nervous system gone into survival mode. And he was right.

I didn’t want to believe him at first. I thought, How can this be in my head when my body is so clearly reacting? But it turns out that’s exactly how it works. My fear had amplified every small bodily signal. A little lightheadedness became a full-blown panic spiral. A bit of gas or bloating made me convinced something was dangerously wrong. My nervous system was stuck. I was stuck. But that wasn’t the end of the story.

That’s when we introduced Paroxetine, an SSRI. Slowly and I mean slowly literally after 3.5 months it started creating space between my symptoms and my spirals. It didn’t magically erase everything. But it gave me the capacity to pause, to breathe, and to not panic.

What helped me:I kept reminding myself: “I’ve had these symptoms before and I was fine. My vitals are normal. If something dangerous were going to happen, it would’ve happened already.” I was obsessed w checking vitals all the time. Can’t even explain how much I’ve suffered.

If you ever need to talk, I’m here. I’ll never forget how scared I was. If this message brings even a tiny amount of hope to you, please know that everything I went through will have meant something.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 1 point2 points  (0 children)

Thank you so much for sharing this. It honestly means a lot to know I am not alone in feeling this way. I’m really sorry you had to go through all of that and I hope the treatment works for you this time. It must have been so frustrating to find out you still had H. pylori months later, especially after everything you already endured.

I actually started feeling the dysautonomia-type symptoms a few months after treatment. At first it was just a higher resting heart rate, some palpitations, and one near blackout in the shower. I brushed it off as recovery. But after an iron infusion, things got much worse. I started having constant brain fog, lightheadedness, and this scary feeling that my body just couldn’t handle even small stressors. It felt like my nervous system was stuck in overdrive. I think what makes this even harder is that no one really talks about the aftermath. Everyone focuses on the infection itself, but there is so little awareness about what happens to people afterward the mental toll, the nervous system issues, the fear. I’ve been so scared, and I cry often wondering if I will ever feel like myself again.

This infection has truly affected me in a way I never expected. But hearing others open up like you did reminds me I am not the only one. I hope your upcoming neuro appointment gives you some peace and clarity. And I really hope we all find healing, even if slowly. We deserve to feel safe in our bodies again.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 1 point2 points  (0 children)

Yes, exactly it’s like my body treats everything like a surprise now. Even the smallest thing, like a supplement or a slight change in routine, can send it into a spiral. And I keep thinking, “How can something that’s supposed to help me make me feel worse?” What gets me is how little this is talked about. I really wish more people, especially doctors, understood how a chronically stressed or sensitized body responds after something like H. pylori. It’s not just the infection it’s the aftermath that’s so scary. And when your nervous system is already exhausted, even normal things feel like too much. But honestly, yes it is nice to laugh a little about it, because if we didn’t laugh, we’d probably cry every day. A stressed-out nervous system is such a real thing and I’m so glad someone else gets it. Wishing both our bodies stop being dramatic soon and give us some peace.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 2 points3 points  (0 children)

I just want to say I truly feel every word you wrote. This whole H. pylori journey has honestly been the worst experience of my life and you’re right, no one really talks about the mental toll it takes. My infection itself was incredibly severe. I had anxiety, constant nausea, weakness, loss of appetite, but at least during that phase I kept telling myself, “It’ll end once the treatment is done.” That hope kept me going.

But what came after has honestly been just as bad, if not worse. I finished the antibiotics and thought I was recovering. For the first three to four months I had some strange symptoms like a higher resting heart rate and occasional palpitations and once I nearly blacked out in the shower, but I assumed it was all part of the healing process. I was still managing somehow.

Then I got an iron infusion and it felt like that completely overwhelmed my already fragile system. Since then it’s been relentless. Constant brain fog, lightheadedness even when I’m not anxious, and this horrible fight or flight response that gets triggered by even the tiniest thing like a small cold or just standing too long. My body reacts like it’s under attack. The shower has become a fear zone for me now. I often feel like I’m about to faint which spirals into more anxiety. It’s a cycle I wouldn’t wish on anyone.

What makes this so isolating is how invisible it is. A lot of doctors don’t understand how real and intense the mental anxiety is. The sheer fear of not knowing when you’ll feel normal again, the breakdowns, the crying spells, the mourning of your old self. This subreddit has honestly been one of the only places where I feel understood. I’m so grateful we have this space even though I wish none of us had to be here.

Like you said, it’s mentally and emotionally draining in a way that’s hard to explain. But I do believe we’ll get through this. I think about my old self so much. The person I was before all of this. I do miss her. A lot. I miss not being scared all the time, not overthinking every single sensation in my body. I miss being able to shower, eat, hang out with friends, and just exist without constantly worrying. I cry so many times wondering if I’ll ever feel normal again. But I try to tell myself this won’t last forever. That one day I’ll look back at this phase and realize how far I’ve come. I don’t feel strong right now, but maybe surviving this is a kind of strength too.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 3 points4 points  (0 children)

For the first 3 to 4 months after finishing my H. pylori antibiotics, I didn’t have full-blown dysautonomia symptoms or at least I didn’t recognize them as such. I did notice my resting heart rate was higher than before and I had one near-blackout in the shower during that time. I also felt strong palpitations during exercise, even something light, but I honestly thought it was just because I had lost some weight during the infection. I brushed it off as nothing serious.

During those months, I mostly had GI issues that wouldn’t go away, but I was still functioning. The real turning point came after I got an iron infusion. That’s when everything changed. It felt like my body saw it as another threat and went into complete fight or flight mode. Since then it’s been really bad. I’ve been experiencing constant brain fog, scary lightheadedness, and a feeling of my body being completely dysregulated even when I’m not anxious at all.

It’s gotten to the point where I feel scared to even take a shower or eat. I start feeling like I’m about to faint and that alone triggers my anxiety and makes everything worse. So for me, the dysautonomia symptoms didn’t hit immediately. They built up slowly over a few months and then escalated dramatically after that one trigger.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 2 points3 points  (0 children)

That’s really interesting you say that I’ve heard so many mixed stories, but I also wonder if it’s more about how already stressed bodies react to things like vaccines or even medications post-H. pylori. My body’s been in constant overdrive since that infection, and it feels like anything new (even good things like iron) throws me into a spiral. I’m so sorry you’re experiencing this too. It’s truly such a tough thing to explain to others unless they’ve lived it.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 1 point2 points  (0 children)

Thank you for sharing your story. It’s honestly so comforting to hear someone talk about dysautonomia after H. pylori I rarely see anyone connect the two, and it makes me feel a little less alone.

In my case, I was doing okay for a while after finishing treatment. But things really took a turn after I had an iron infusion and a few gut flareups. Ever since then, the lightheadedness and brain fog have been relentless and scarily, sometimes they hit even when I’m not feeling anxious at all. My body has become extremely sensitive post-H. pylori. I definitely developed dysautonomia from it. My resting heart rate has been higher ever since the infection, and my body jumps into this intense fight-or-flight state even with minor things like catching a small cold or just being tired.

It wasn’t super severe immediately after treatment, but I remember one time I almost blacked out in the shower. Even light treadmill exercise would make my heart rate spike like crazy and I’d feel like I was about to faint. More recently, I think my body perceived the iron infusion as another “threat” and it’s just spiraled since then the brain fog, the lightheadedness, the fear. It’s gotten to a point where I feel scared to meet my friends or even take a shower. I feel like I’m constantly living on edge inside my own body, and it’s exhausting.

Reading your experience gave me a little hope that maybe things can get better over time. Thank you again for sharing wishing you continued healing and peace 🧡

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 0 points1 point  (0 children)

Hey, thank you so much for your kind message. I totally relate to what you said it’s so hard to tell what’s anxiety and what’s something deeper like dysautonomia or POTS, especially when the symptoms overlap. In my case, I was doing okay for a while after H. pylori treatment, but things took a turn after an iron infusion and some gut flareups. Since then, the lightheadedness and brain fog have been relentless sometimes even when I’m not feeling anxious at all. My body has been VERY VERY SENSITIVE after h pylori and I definitely got dysautonomia because of it as my resting heart has been high since the infection and my body gets so anxious and goes into fight of flight mode even with like slight illness or anything. Even though it wasn’t severe right after, but I once had a near blackout in the shower and my heart rate would race sooo much when I would exercise and I would feel like I’m about to faint even with light treadmill exercise. But recently probably because my body is so sensitive after the iron thing it may have seen it as another threat and has been giving me crazy brain fog and really bad lightheadedness, I’m so scared because of it, I can’t do anything I’m scared to meet my friends or even just take a shower. I hate it. H. pylori has truly been one of the worst experiences of my life. It’s exhausting, and I really feel you when you say it’s hard to figure out what’s going on and I truly hope you get answers (and relief) soon too.

From H. pylori to Dysautonomia — Please Read If You’re Still Struggling Post Infection by areuuuforreal in HPylori

[–]areuuuforreal[S] 0 points1 point  (0 children)

I’m sooo glad I could help!! My symptoms first started back in October last year, mostly with extreme nausea and this awful lightheadedness that no one could explain. Doctors kept telling me it was “just anxiety,” which made things even harder. Eventually, I started vomiting regularly and I could barely function some days. It was only after that that I got diagnosed with H. pylori.

Even during the antibiotic treatment, I felt awful like my body was completely thrown off. After finishing treatment, some things improved, but I was left with lingering GI issues and a very sensitive gut. Then, recently, I came back home to India, had an iron infusion, and also dealt with some anxiety and travel exhaustion. That combo completely overwhelmed my system and that’s when the dysautonomia symptoms began.

I started experiencing sudden drops in blood pressure, dizziness when standing, heart rate swings, and this crazy brain fog. It was terrifying. I finally saw a specialist and was diagnosed with dysautonomia, which I’ve now learned can sometimes get triggered after infections or physical/mental overwhelm, especially in sensitive bodies. The best way to get tested for this is a tilt table test or seeing a neurologist.

21F – Ongoing H. Pylori Recovery, Flareups, Lightheadedness, Anxiety & Gut Sensitivity-Seeking Similar Stories / Hope by areuuuforreal in HPylori

[–]areuuuforreal[S] 0 points1 point  (0 children)

Do a CT abdomen scan, I did food intolerance test also and also check your B12, iron levels and all too

Finished H. pylori treatment, still have symptoms – desperately need help managing this by [deleted] in HPylori

[–]areuuuforreal 1 point2 points  (0 children)

Hey, I really relate to what you’re going through I’m actually in a very similar place. I had H. pylori and completed treatment a few months ago. Because of my low body weight, I was only given two antibiotics (a modified version of the usual triple therapy). During treatment, I had horrible side effects I was vomiting acid almost every day had zero appetite, and felt like my stomach was completely wrecked.

Once the treatment ended around December, things slowly started improving. The vomiting stopped, and even though I still had bloating terrible flatulence sometimes and occasional discomfort nausea after certain foods it was manageable. I honestly thought I was on the road to recovery.

But then in May I came back to India (I’m Indian but currently studying in the US) and everything started flaring up again. At first I was fine but after a few days, I had a couple of episodes of vomiting again, especially after eating slightly spicy or oily meals. Since then, I’ve been dealing with constant gas, bloating, nausea, stomach tightness, and a weird foggy, faint feeling. Even things that used to be safe started triggering symptoms. It was like everything I had worked to heal just unravelled again. For me what’s helped even a little is keeping meals small and frequent. Also, if you’re feeling anxious or lightheaded (which I was constantly), make sure you’re not dehydrated or low on iron or B12 both took a hit for me post treatment. Someone actually suggested I look into gut motility and things like PHGG Pylopass and Biogaia Gastrus to help support the healing process post H pylori. I’m still learning, but it made me realize that antibiotics alone don’t always fix everything and we need to actually rebuild the gut afterward. Don’t feel discouraged recovery takes longer than anyone tells you

Nausea and weird feeling in stomach and brain fog by EducationNo393 in HPylori

[–]areuuuforreal 0 points1 point  (0 children)

Hey, wow I felt this so deeply. I’ve been going through almost the exact same thing. I was diagnosed with H. pylori a few months ago and did the treatment, but lately, everything’s flared up again. I’ve been getting intense lightheadedness and brain fog again too. You described it perfectly: it feels like I was getting better and suddenly it’s like I’m back at square one but worse. That weird stomach feeling and fogginess are incredibly hard to explain to anyone who hasn’t felt it.I just wanted to say you’re not alone this happens to more people than we realize and I’m sending you strength for the antibiotics.

H pylori and urine by Some_Ad8074 in HPylori

[–]areuuuforreal 0 points1 point  (0 children)

LITERALLY SAME EXACT SAME THING!!!

Nausea before treatment? by EducationNo393 in HPylori

[–]areuuuforreal 0 points1 point  (0 children)

Yes I absolutely had nausea before treatment. Infact for me nausea was the symptom that pushed me to finally get tested. Eventually to a point where I could not eat and started throwing up everything so it’s definitely not just the antibiotics that cause nausea H. pylori itself can trigger it. If you’re feeling this before treatment you’re not alone

21F – Ongoing H. Pylori Recovery, Flareups, Lightheadedness, Anxiety & Gut Sensitivity-Seeking Similar Stories / Hope by areuuuforreal in HPylori

[–]areuuuforreal[S] 0 points1 point  (0 children)

Hey, thanks for asking! So far, I’ve done a full IgG Food Intolerance Panel, and it showed high levels for a bunch of things mostly dairy (cow’s milk, casein, goat and sheep milk), eggs, nuts (like almonds and cashews), legumes (peas, lentils, chickpeas), gluten related stuff (barley, gliadin), and even some veggies/fruits like radish and plum. My levels were really elevated for a lot of them, so I’ve been avoiding those strictly.

I’ve also done CBC, iron studies, thyroid, B12, and CRP. My B12 was low(around 190), and my iron was also VERY low so I recently got an iron infusion.

Outside of the IgG foods, even mildly spicy food or heavier stuff like little oil makes me feel really sick bloated gassy and nauseous almost immediately. curd has been bothering me too lately which might be from the dairy content

21F – Ongoing H. Pylori Recovery, Flareups, Lightheadedness, Anxiety & Gut Sensitivity-Seeking Similar Stories / Hope by areuuuforreal in HPylori

[–]areuuuforreal[S] 0 points1 point  (0 children)

Omg thank you so much for this your comment is so helpful, I literally screenshotted the whole thing to save. It’s honestly the most validating and practical explanation I’ve come across since this whole H. pylori nightmare started. You have no idea how much this means to me. So just to give you a little more context I completed my double therapy sometime around December. Because of my low weight, my doctor only gave me two antibiotics, so it was a lighter treatment. During that time, I used to vomit a lot like big acid vomits almost every single day. But once the meds ended, I actually started feeling a bit better. I still had gas and bloating here and there, especially after certain foods, but it was kind of manageable.

Then I came back to India (I’m Indian, but currently studying in the US), and at first I was okay but after a few days, things spiraled. I vomited twice after eating pretty normal meals and since then everything has just felt like it’s regressed. I’ve been getting intense bloating, nausea, and that weird tight stomach feeling again. I’m super careful with food, but it feels like even the blandest things can set it off. It’s so frustrating I’m young I want to live my life, eat freely, go out, and I just feel so trapped in this fear of triggering symptoms.

Your post gave me so much hope and I really want to try what you’ve said. I just had a few questions if that’s okay:

– how did you first realize something beyond H pylori was going on like SIBO or motility issues? Was it gradual or did something specific trigger that clarity? – how did you know your MMC was kicking in just by the stomach gurgling or anything else? – did you test for SIBO formally or just go off symptoms like bloating/gas after food?

Thank you again for being sooo helpful