lschwartz408 Posted August 29, 2023 Report Share Posted August 29, 2023 Hi Everyone - I have a very serious issue and I am looking for help from anyone who has experienced this strange symptom before. I have tried to reach out to members @Agreeky and @Foggy01 because I saw that they had previously discussed this symptom, Every doctor I go to looks at me like I am crazy. I am currently in a psych unit here in the US because the doctors and my husband think I have a mental illness. I would really appreciate your help and even if you haven’t experienced it directly yourself, maybe you can put me in touch with someone who has gone through this before. Doctors are just of no help whatsoever. I keep getting this feeling /sensation that I have stopped breathing automatically. It is the most terrifying thing I have ever experienced. I have been to so many doctors and ER’s. It’s crazy. They do nothing for me. I have been completely fine with this autonomic dysfunction for over 2 years and then a month ago, I encountered that symptom and my life has been turned upside down. I have 3 small children and I am sitting in a psych hospital, unable to care for them. I feel like the signaling to my brain got shut off and I am not able to breathe unconsciously anymore when this happens. I live in panic and fear every single minute of my life due to it. I am afraid to go to sleep because of it and I am constantly monitoring my breathing to the point it has severely impacted my mental health. PLEASE get back to me as soon as you can about any experiences you have had with this symptom. Have I lost the ability to breathe on my own (normally/ unconsciously)? Is there a problem with my brainstem now? It is a feeling like I have to manually breathe for myself and I am afraid to even move. I haven’t slept in weeks because I am terrified of not breathing and dying. Thank you for your help. I am desperate. Quote Link to comment Share on other sites More sharing options...
Muon Posted August 29, 2023 Report Share Posted August 29, 2023 Yes I have this symptom, you will have to breath manually. Heat is perhaps the largest trigger. I can feel the middle part of my head as well, I think it’s related to the brainstem (that’s also where these oscillator nuclei are located). It’s better now than it was in the past when the autonomic system went haywire and had a compete loss of autonomic breathing. I haven’t found a remedy (doctors don’t take this seriously). The state I’m in now is that the autonomic breathing doesn’t work optimal but isn’t close to being shut-off completely like in the past. I went to an emergency unit for this specific symptom. Quote Link to comment Share on other sites More sharing options...
lschwartz408 Posted August 29, 2023 Author Report Share Posted August 29, 2023 What did they do for you? How did you get it better for yourself? A problem with the brain stem- as in brain damage? I am able to go to sleep though so if it was a problem with the brain stem I don’t know how I would ever wake up. Have you ever gone to sleep? Do you know what this is related to? Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 29, 2023 Report Share Posted August 29, 2023 @lschwartz408, I’m so sorry to hear of your situation. You mentioned you had autonomic dysfunction previously. Do you have a specialist? Is there any autonomic specialist nearby you can ask to see? What about a respiratory therapist? I have not had this symptom myself, but I see it mentioned frequently in support groups. People seem to notice it and find it strange or upsetting, but are somewhat reassured to find that others have the same experience. I haven’t seen any posts about it leading to a fear of sleep, although I certainly understand how that could happen. Maybe a respiratory therapist could arrange for you to have a respiratory monitor with an alarm so you could attempt to get some sleep with a safeguard in place. Although I fear the response to that from the doctors might be that it would be pandering to your mistaken thoughts rather than providing reassurance. There are smart, compassionate doctors out there, and I really hope that one will rotate through your ward soon. Quote Link to comment Share on other sites More sharing options...
Muon Posted September 1, 2023 Report Share Posted September 1, 2023 On 8/29/2023 at 8:00 PM, lschwartz408 said: What did they do for you? How did you get it better for yourself? A problem with the brain stem- as in brain damage? I am able to go to sleep though so if it was a problem with the brain stem I don’t know how I would ever wake up. Have you ever gone to sleep? Do you know what this is related to? Thank you for your help. I didn’t get help. It became better by itself over time. It only peaked for 1 summer season where, like you mentioned, the signaling just stopped. Winter season improved this symptom until the next summer it struck me again but not as intense as before. POTS also improved gradually over the years. I could not fall asleep with this symptom. I slept barely. I get the impression my body has a problem with multitasking specific functions or lacks some kind of power. If it’s digesting food in the stomach then it may disrupt the respiratory rate, like a waterbed effect. Bowel movement can disrupt autonomic breathing as well. I have problems with sexual triggers btw, triggering clusters of symptoms and can feel the same middle part of my head when this happens. It probably excites the same system aside from potential immune problems. Quote Link to comment Share on other sites More sharing options...
Tiffany Kyriakos Posted September 5, 2023 Report Share Posted September 5, 2023 Hi there! I don’t know if I have exactly this symptom, at least not in its full form. But I have issues regulating my breathing subconsciously sometimes. One time I was at the ER (for something unrelated) and was hooked up to all the different types of monitors. Well all of a sudden, the alarm started going off because my respiratory rate dropped to 5 breaths a minute. I realized I was very out of breath and had to think about breathing to get things back on track. This has happened to me in my sleep as well. I will wake up gasping for breath. It feels like I just hadn’t been breathing, like I forgot to breathe. It’s actually a type of sleep apnea where your brain just stops sending the signal to breathe. Your brain will wake you up because you’re not breathing, and you’ll start again. At least that’s how it goes for me. I notice days when I am stressed out, when I have certain allergen triggers, or when it’s very hot, these symptoms appear. Putting a pulse oximeter on and seeing the oxygen level being normal helps me stay calm and get through the episode. Something else worth noting is my rheumatologist thinks it’s related to MCAS, which I am suspected of having but not been diagnosed yet. You’re definitely not crazy though. I’ve read multiple places online that POTS affects the way we breathe. I think there’s breathing techniques that can help us retrain ourselves how to breathe properly again. I would definitely recommend getting a pulse oximeter if you don’t have one, so when these episodes come on you can see that your oxygen levels are (hopefully!) normal (make sure your hands are warm or it won’t read right). I’m no doctor, but this has just been my personal experience. Quote Link to comment Share on other sites More sharing options...
lschwartz408 Posted September 5, 2023 Author Report Share Posted September 5, 2023 Thank you for your reply! So it just got better Hr itself? You didn’t do anything to change it back over to automatic? Quote Link to comment Share on other sites More sharing options...
Tiffany Kyriakos Posted September 5, 2023 Report Share Posted September 5, 2023 I’m so sorry you’re going through all that! Being placed in a psychiatric facility is NOT going to help your symptoms get better. Stress is a major contributor to flare ups with dysautonomia (and not because it’s “all in our heads” or “anxiety”). check out this article, it talks about breathing pattern disorders in people with Pots (and presumably anyone with autonomic system dysfunction): https://www.potsuk.org/managingpots/breathing-pattern-disorders-in-pots/#:~:text=This can cause us to,heart palpitations%2C tingling and fatigue. A similar thing happened to me a few weeks ago. My husband and I were going to go on a flight for the first time since I was diagnosed with POTS and I was exceedingly stressed out about it. We also ended up going to the ER one morning because I felt like I couldn’t breathe for hours. They did a work up and said I was breathing fine. We went home, but for the next week or so I had that feeling most of the time. Putting the pulse oximeter on really helped calm me down, because I could see it was just a feeling of not getting enough air, not a reality. They sell them at Walmart for around $25. As far as I know, dysautonomia cannot make you lose your ability to breathe on your own. Trust me, we went through the ringer trying to find people to believe me with my symptoms for years. A lot of times, if doctors don’t know much about it, they’ll think you’re mentally ill. One of the special trials of these diseases is finding a doctor who knows enough to help and is humble enough to listen and believe you. The second part is more important, in my experience. The whole feeling like there’s just a dead space in your chest, I totally get that. I have that exact feeling from time to time. Hopefully knowing that other people experience similar things will help. I know it has helped me! Also, don’t be afraid to go to the ER or even an urgent care if you’re not feeling good. I’ve gone to the ER multiple times a month on some occasions, before I got started on a treatment that’s helped me for my POTs. The peace of mind alone is worth it, in my opinion (urgent cares are just cheaper). Will be praying for you! Feel free to reach out any time, I’m glad to try and answer any questions Tiffany Quote Link to comment Share on other sites More sharing options...
Cookiemonster Posted October 3, 2023 Report Share Posted October 3, 2023 On 8/29/2023 at 9:18 AM, lschwartz408 said: Hi Everyone - I have a very serious issue and I am looking for help from anyone who has experienced this strange symptom before. I have tried to reach out to members @Agreeky and @Foggy01 because I saw that they had previously discussed this symptom, Every doctor I go to looks at me like I am crazy. I am currently in a psych unit here in the US because the doctors and my husband think I have a mental illness. I would really appreciate your help and even if you haven’t experienced it directly yourself, maybe you can put me in touch with someone who has gone through this before. Doctors are just of no help whatsoever. I keep getting this feeling /sensation that I have stopped breathing automatically. It is the most terrifying thing I have ever experienced. I have been to so many doctors and ER’s. It’s crazy. They do nothing for me. I have been completely fine with this autonomic dysfunction for over 2 years and then a month ago, I encountered that symptom and my life has been turned upside down. I have 3 small children and I am sitting in a psych hospital, unable to care for them. I feel like the signaling to my brain got shut off and I am not able to breathe unconsciously anymore when this happens. I live in panic and fear every single minute of my life due to it. I am afraid to go to sleep because of it and I am constantly monitoring my breathing to the point it has severely impacted my mental health. PLEASE get back to me as soon as you can about any experiences you have had with this symptom. Have I lost the ability to breathe on my own (normally/ unconsciously)? Is there a problem with my brainstem now? It is a feeling like I have to manually breathe for myself and I am afraid to even move. I haven’t slept in weeks because I am terrified of not breathing and dying. Thank you for your help. I am desperate. Hi I have autonomic dysfunction, and yes, my breathing also stops just as I am going off to sleep, it goes very slow then stops, yes it’s very frightening, I do sleep and I always wake up. One thing that helps me is awareness of what I eat and how much. I stick to a high protein, low unrefined carbs, and low fat diet, keeping meals small, and eating little and often, with no sugar, caffeine, and I limit alcohol. I drink at least 2half litres of water per day, and add salt, to all meals, Quote Link to comment Share on other sites More sharing options...
lschwartz408 Posted October 15, 2023 Author Report Share Posted October 15, 2023 So this is a “normal” part of the AD? Thanks for your reply. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted December 27, 2023 Report Share Posted December 27, 2023 On 10/15/2023 at 12:47 AM, lschwartz408 said: So this is a “normal” part of the AD? Thanks for your reply. I'm so sorry to read of your struggles! How are you doing now? I hope you figured out this breathing issue and are back home? Quote Link to comment Share on other sites More sharing options...
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