u/Queen_Event_Horizon

Hi everyone, I’m looking for some advice and also comparing notes on symptoms and coping strategies.

I’m 37 now and my issues first started in 2022. When walking outside, I would have to stop and take a deep breath because I would get this feeling that if I move, it’ll be lights out. I wasn’t dizzy or lightheaded - it was a strange feeling of almost an internal drop and a feeling that if I moved my head to the side, that would be it and I would faint. Once this started happening, I also started getting spikes in my BP when before I’d always had low blood pressure. These episodes would last for days and sometimes weeks. I did all sorts of tests for diabetes and heart issues but that was all ruled out. Then months would pass with no issue until it started all over again.

Then in 2023 all hell broke loose for me. I started developing horrendous abdominal spasms. In those months I could barely eat or move as any walking longer than 5-10 min brought on the same symptoms of blacking out. My legs and arms felt drained of all strength. Some background here - I have quite an unusual anatomy - I was born with an annular pancreas and had a life-saving surgery when I was 2 weeks old, to correct the fact I wasn’t able to keep any food down. I also had a malrotation of the stomach and intestines but post-surgery I no longer had any issues.

In 2024, it took countless gastroenterologists, 3 endoscopies and a colonoscopy to discover that I had IBS, narrowed anastomoses from my surgery as an infant, a low-lying stomach that is elongated and doesn’t empty easily, and very likely extensive adhesions. Through sticking to a strict diet and using anti-spasmodics, I’ve more or less recovered from the acute IBS symptoms and rarely have any spasms now.

But my main issue continues to be neurological. I’ve seen multiple cardiologists and they’ve ruled out any heart issues, but even now I might go weeks being absolutely fine until out of nowhere I’ll be out and about (always outside) and my head would start playing up again - the same feeling of needing to stop because I’d trip or switch off. Invariably in the next few days my BP starts going up and down. I’ve managed to figure out through talks with my gastroenterologist that my low-lying stomach might be causing some CNS issues but these should be strictly related to the intake of food. So the behaviour of my symptoms doesn’t match this.

But replaying my symptoms I’ve started noticing other oddities - when I get one of these flare-ups, my neck near the base of my skull feels very raw and tense. I don’t get neck pain but moving my neck too much to the side or touching my neck, makes me feel I’ll faint. When this happens, I feel unstable for days or weeks and walking for longer always brings on feelings of almost blacking out or tripping. What’s even more bizarre is that I might be relatively okay but if I’m walking in open spaces - like a public square tiled with geometric figures or vibrant colours, I feel even more unstable and the feelings of dropping intensify. I no longer walk on foot bridges or significant drops or inclines as I can't trust my balance. This week I was walking near a construction site where a net was draped over some building materials. The wind blew it out and I had to stop in my tracks as it felt the world was moving. It’s the most disconcerting feeling. My BP is also all over the place.

I’ve been to see a neurologist (a year ago) and she did a Doppler test to check the bloodflow in my neck and everything was fine. So for almost 4 years I’ve been on my own (even though I’ve seen countless doctors) trying to figure out what is going on. At first I thought it might be my vagus nerve but now it’s starting to dawn on me, these symptoms somehow always overlap with discomfort in my neck.

Looking back on my poor choices, I realize I spend significant amounts of time working on my laptop and during Covid I’d gotten into the habit of working on my couch with my laptop in my lap. I know *eyeroll* - not conducive to great posture. I’ve since invested in an ergonomic home office setup but even now sitting long hours seems to cause problems.

I’m sharing this in the hopes that someone else might’ve experienced similar symptoms and would be able to share their thoughts - do you think this could be cervical vertigo? Do you have any advice on who I should see - a neurologist or maybe a physiotherapist? Any comments or thoughts would be of much help.

Thank you

Hi everyone - I’m looking for some advice and maybe just reassurance that I’m not going crazy!

My medical history is somewhat complicated - I’m 37 now but I was born with multiple GI malformations - I have an annular pancreas that was strangling my duodenum making it impossible to keep any food down. I was 2 weeks old when they had to perform a life-saving surgery to correct this. I also had multiple other issues - a malrotation of the stomach and intestines. But after the surgery this was all resolved and for the next few decades I didn’t have any issues apart from a bleeding ulcer in my teenage years. In my 20s though I was pefectly fine and I was sure that whatever issues I might’ve had in the past, I had clearly outgrown them.

Fast forward to 2022 and I started getting really bizarre symptoms. I would be fine for months at a time and all of a sudden I would get major spikes in my BP out of nowhere. These episodes would last for days and weeks where I would feel fine one minute and I’ll be outside doing things and all of a sudden I would have to stop and take a deep breath and hold onto something as i felt I would just switch off. I wasn’t dizzy or lightheaded - it was a strange feeling of almost an internal drop and a feeling that if I moved my head to the side that would be it and I would faint. In those days and weeks my BP would also go up and down for no reason. I did all sorts of tests for diabetes and heart issues but that was all ruled out. Then months would pass with no issue until it started all over again. But all this was a walk in the park until in Feb of 2023 all hell broke loose for me. I started getting terrible abdominal spasms that made me think it was a period/gynecological issue. I changed 2 gynecologists who found nothing until a few months later the symptoms started progressing to my whole abdomen and the spasms were accompanied by gurgling and a hard lump that felt like a solid rock right next to my navel. In those months I could barely eat or move as any walking longer than 5-10 min brought on the same symptoms of blacking out. My legs and arms felt drained of all strength. The leg on the side where the hard lump was sitting would often go numb.

It took more than 2 years and countless gastroenterologists, 3 endoscopies and a colonoscopy to discover that I had IBS, narrowed anastomoses from my surgery as an infant, a low-lying stomach that is elongated and doesn’t empty easily, and very likely extensive adhesions as my colon was twisted pretty badly. Through sticking to a strict diet and using anti-spasmodics I’ve more or less recovered from the acute IBS symptoms and rarely have any spasms now.

But my main issue continues to be neurological. I’ve seen multiple cardiologists and they’ve ruled out any heart issues, but even now I might go weeks or months being absolutely fine until out of nowhere I’ll be out and about (always outside) and my head would start playing up again - the same feeling of needing to stop because I’d trip or switch off. Invariably in the next few days my BP starts going up and down, and in a few more days my GI issues would also follow (mostly some gurgling and the hard lump would be back - this I found out was the end of my elongated stomach that has now dropped next to my navel). One of the gastroenterologists finally told me that because of my anatomy (namely the dropped stomach), symptoms of the central nervous system are to be expected but he as good as told me I just needed to learn to live with it and just get on with my life. Which is all fine until the neuro symptoms kick in and I’m then confined to my house for weeks until my system settles. For weeks I would feel unstable - walking for longer always brings on feelings of almost blacking out, what’s even stranger is that if I’m walking in open spaces - like a public square or sth, that are tiled with geometric figures and vibrant colours, I feel even more unstable and have to literally flee. While these episodes last my BP is erratic going very high or low all the time, my neck is throbbing and raw and then I avoid touching it because it feels like I’ll surely faint. At the height of these episodes, my limbs often feel too weak to even move.

My current gastroeneterologist hasn’t been of much help apart from finally confirming that my anatomy can lead to CNS issues but I’m now all on my own. I don’t know how to control this or how to get my life back. I always get so excited when months pass with no symptoms and then I dare hope that it’s all just been a bad dream and I’m finally back to my old self, but then something would happen and the neuro symptoms will be back. At this point, I don't even know if my GI problems are causing the neuro symptoms, or the neuro symptoms are triggering my GI issues.

I’ve been doing my own research and it seems to me this might be a vagus nerve connection but it’s been 4 years now and I don’t even know what I can do or who I can go and see for this. Where I live most neurologists are general practitioners, and the one neurologist I saw wasn’t of much help.

I’m sharing this on here with the hope that someone may have had similar experiences and might be able to offer advice on how to manage this or even have some ideas for next steps.

Thank you all!