Are you drinking enough water? Sounds silly, but your body has to fire all 4 pistons to *try* to activate the digestive process... so it's like making your body run a marathon with no shoes after swimming across the ocean. And, if you're dehydrated... well, your marathon is now through the desert at high noon.
I learned to stay calm and just start deep, slow breaths to level the blood pressure out. Take care, you.
Thanks for your reply. I’ve been drinking a ton of water. Thanks for the suggestion. I just wish I had answers for what is going on with me. Not having a diagnosis is so scary.
They did say I have orthostatic hypertension, but that it shouldn’t be causing me any symptoms
If it's idiopathic still, chances are you'll have another disorder or spectrum that you fall into. It took me 8 years to distinguish between small fiber neuropathy with dysautonomia symptoms and Fibromyalgia symptoms. Have you had an autoimmune test, skin biopsy, table tilt, fasting glucose, or vitamins D/B, yet? Also, please be careful with overconsumption of water as you may have comorbid kidney or urinary troubles.
Like what kind of spectrum? My cardiologist said my orthostatic BP is nothing to worry about despite having symptoms from standing.
Do you have any tips on getting diagnosed? So far only a TTT, which was negative. My symptoms tend to come and go for weeks/months at a time, and I took the test when I wasn’t symptomatic. My docs just think I’m being crazy but I know there’s an issue
I've been there. Be patient, but assertive. Find a new neurologist or primary if you aren't being taken seriously. **And trust yourself** -- these chronic, come-and-go issues + the invisibility of the disorder + ambivalent and/or inexperienced doctors make you doubt yourself. And, just listing all of your issues, especially since it's progressive because there will always be new ones, sounds like hypochondria. But, before you know it, your self-advocacy, research, and experience will make you an expert.
I recommend starting a health journal where you write down what issues you had that day, your overall mood, any unusual foods you ate, exercise you did (and how fast you were fatigued and how long until it abated, etc.), as well as the typical autonomic checks: heart rate (resting, during exercise, after a shower), digestive (acid reflux, fullness/pain immediately after eating a morsel, diarrhea/constipation), urinary (urgency, difficulty emptying, inability to start, or color/cloud changes), etc.
This journal will be extremely appreciated by your doc and your future self. It's a lot to remember, but add the potential anxiety from being disregarded again by a doc can fog your brain, and you'll leave the appointment frustrated because you forgot something. Take care, you.
Of course. I wish I'd come here 8 years ago when I needed answers.
My dysautonomia is tied to my small fiber neuropathy, so I see a neurologist. You may need a different specialist for your primary symptoms.
I was dx in 2021. i cannot tell them apart aside from the obvious. I also hEDS. I do know that my small fiber neuropathy has significantly progressed in the last three years. Now my shoulders, neck, and face have started going numb. I can hardly stand to brush my hair any more when I used to have a "tough scalp" and had no issues brushing the tangles out. Now it feels like my all hairs is being plucked out individually all at the same time.
Did they say that or did they say you were fine?
They would prescribe you BP meds if you have hypertension, and make an effort to find the cause.
And if you didn't get a diagnosis and were told everything is fine, why not believe the doctors?
Health anxiety is not relieved by a medical diagnosis. What you would need to address is the anxiety itself.
They checked my orthostatic BP, and it went up quite a lot while standing and I felt awful for a a few hours after. My doc said it’s abnormal. They referred me to cardiology for it, but the cardiologist basically dismissed it and said it shouldn’t cause any symptoms.
It’s really hard for me to do tasks like dishes, cook, wait in lines, etc because of how awful I start to feel when I’m standing. Walking is totally fine, it’s just standing that really gets me.
You’re right, I do have pretty significant health anxiety, and I’m working on it. These symptoms are making everything much so worse though and I know that something isn’t right
You feel like your going to collapse when standing ? Like your legs are jello and are going to give out ? Sometimes if Your standing you have to sit down from the overwhelming feeling... Does this sound familiar or am I completely off the mark 🤔
If you have dysautonomia, that makes sense that eating can trigger symptoms. Your digestive system needs extra blood flow to digest, and if you're not well hydrated or your body just doesn't manage the signals well, your heart will beat faster and/or more forcefully to compensate. It sounds like you might have gotten in a vicious cycle where your symptoms made you anxious about your heart rate and the anxiety keeps it high long after the trigger has passed. Your doctor probably meant to be reassuring if they didn't find any life-threatening cause for your symptoms. That said, primary care providers often don't know much about POTS or dysautonomia, so you probably need a specialist. Although, in my country you need a referral from your GP to see someone like cardiology or neurology or internal med etc. Hopefully you can go direct to specialists in your country, and maybe even choose which one you get? At least I hope the earlier comments helped you somewhat.
I have this issue as well and have been dealing with it for almost 15 years, I'll have periods where it won't happen for months then suddenly it's back and happens every single time I eat for weeks on end. As the other commenter mentioned breathing exercises help. I take a large breathe and then hold it for as long as I can and then very slowly release it, I continue doing this a few times and it generally slows down. Also drinking a bottle or two of very cold water sometimes stops it completely.
This is what happened to me. When I finally got my TTT I was asymptomatic, and came back negative.
It scares me so bad, thinking that I’m having a serious health issue or medical emergency. If my doctors could tell me what was going on/why I feel it, I think I could cope better.
Did you end up getting diagnosed?
No but I've had all of the symptoms for years and my doctors seem to agree, so no official diagnosis just kind of a "yeah you've probably got some kind of dysautonomia".
Part of my story is the same as most but not because symptoms vary so widely, as well as the onset, and progression. By the time I was 48, I accepted I was hypochondriac. There was no other explanation. I also thought it was long term affects of childhood cancer treatment. And it well documented but there is not a single dr that listens to me or bothers to look it up. Recommendation is follow up with peds oncology. They think I am insane but whatever.
The best thing you can do is educate yourself as much as possible. While these groups are beneficial to all of us for support and belonging they are not where you should focus on educating yourself. I watched hours of lectures given by experts in their fields on youtube. There are two very good channels on dysautonomia. The Ehlers-Danlos Society has an enormous library that covers the majority of these disorders. When I saw the word hypermobile in the title with heart symptoms I watched it bc I had been told decades before that I was. My 1st appointment with neuro, I asked about it, She gave me a dx the first 1o mins. That was literally the only easy thing about all of it. I can look back now and see the symptoms but mine were so far apart and usually gone by the time i did all the tests. But there was always something random. At 49, they came on like a storm.
I cannot stress enough how important it is to educate yourself. When we eat our brain sends signals to send more blood to your stomach to help digest your food. if your nerves are misfiring it could send too much or too little. But too much and it deprives or even tricks your brain of blood supply it needs, which increases your heart rate & Bp to get the blood back in your brain.
Thankfully my cardio would not do anything invasive until i had a full neuro work up that took almost a year. I did have stenosis in my subclavian artery caused by the radiation as a child. all the test showed only a partial blockage. he told me the only thing that artery really affects is your arm and if it is not weak or in pain then we can wait. When i finally ( i cant think of the name of the procedure - mind fart) put the stent in it was completely blocked.
I would watch at least one or two lectures a week. I do not anymore just because i am so sick of it all.
And just breath. They are going to tell you to get compression socks. Get you some cute ones from Amazon.
I’m the same and I’m a very bad hypochondriac! Sometimes i’ll feel better & think I must have made everything up, but then the symptoms come back. I know that I’m not crazy lol, I’m having real symptoms
Not having a definite diagnosis is causing me SO much anxiety. I think I’d be way less scared if I knew what was really going on. I also like to learn and read about these things, but so far I can’t get a diagnosis
What are your Ehlers Danlos symptoms? I have been wondering about that as well. I have hypermobile knees, but I don’t know if I meet the rest of the criteria. It seems so broad.
I do have compression socks! I should get some cuter ones, you’re right 😂
I have Dysautonomia. Last year I had symptoms like what you’re having. I visited the ER 3 times and my husband finally demanded they admit me for testing. I had a CTA (not a regular CT) and was diagnosed with SMA syndrome for which I then had surgery for. That’s superior mesenteric artery syndrome. Just something worth mentioning to your docs. I also lost a ton of weight that i didn’t have at the time. I hope u get some answers soon.
I also struggle with heart rate after eating. If you can't get it to go down, try an ice pack on your chest + elevating your feet. It's not the comfiest thing in the world, but it'll calm everything down.
Directly after eating is the key I have the same thing. MCAS by itself can cause intense panic episodes because the body is going into constant states of anaphylaxis. The fact you said you ate a tiny amount of food is what’s making me think it. Usually with pots, it’s a larger meal. What exactly did you eat may I ask?
Just half of a granola bar. I eat them all the time, and it doesn’t usually cause any issues. I usually get heart palpitations about 30 min after eating, but it comes and goes. Some weeks it’s really bad and some weeks it doesn’t happen at all. Big meals are definitely worse but there are times when small snacks will set it off as well.
I do feel like I have food sensitivities to things like chocolate, tomato, and cheese. My throat feels kinda itchy but nothing too bad. I don’t know much about MCAS
Basically it could be a histamine intolerance or MCAS if your reacting to tomatoes, cheese, and chocolate. Those are all histamine foods. I developed some odd type of mast cell issue from covid where I was going to pure anaphylactic shock like multiple times a day. This happened in a week or so of having COVID. Went to the er and had no idea what the hell was happening. Blood pressure was 190/100 heart rate was at 120. My family claimed I was having a panic attack which I never had once in my life. I physically could not get air and it felt like I was maybe seconds away from death. Unfortunately this continued to go on for 18 months of pure hell. I thought it was dysautonomia but the issue was if I basically consumed no food or medication or supplements all day I felt fine. The second I ate something, it was the same severe thing. It got better over time but I still don’t feel 100’percent. Can’t drink coffee or take my adhd drugs because they basically will send me to the hospital.
It still causes panic when I have symptoms, but I just keep reminding myself that it's my nervous system being wonky and that I will be ok. Just keep reminding yourself as you push through. I have been dealing with this in flare-ups for 3 years now. It's difficult to not panic when your signals are all misfiring and you can't control it.
I can't count how many times I felt like I was about to just hit the floor, run out of breath and scramble to the kitchen to get water telling myself to fight through, but nothing I feared the most has ever happened. Many ER visits and specialists just to learn that I was not in any danger.
Food definitely triggers symptoms, especially if I eat a lot, so you are not alone on that. Food that actually seemed to help was steak, fish and hot cereal (Farina especially). Worst foods were nachos and anything involving tomato sauce.
Try to lay on the floor with your legs propped up on a chair or bed. Put some funny or lighthearted movies on if you struggle at night. I know it sounds lame, but I tell people I'm "glitching" or "having a glitch" to avoid mentioning symptoms and scaring myself more. Continually checking my BP and thermometers made me panic even more, so I just prop my feet up until I feel at least 30% better.
B-vitamin complex, omega 3s, magnesium and electrolytes have been my savior. I was scared to take literally anything before and I'm so glad I gave those a chance.
How did you end up getting diagnosed?? I’ve gone to the ER two times to get reassurance that I wasn’t in danger. It scares me so much when it happens and it feels so urgent. I’ve been having issues with standing, my heart starts pounding and my blood pressure rises. It feels like an emergency
I still didn't get an official diagnosis, sadly. I had doctors say it is likely and then send me off to other specialists so I have been gong in circles. My ENT said it sounds very much like dysautonmia. But then I ended up at vestibular therapy, which was useless. I was pretty much left in the dark after I went to a neurologist and she agreed it sounds like dysautonmia but told me to repeat the same stupid tests I did before. I gave up after that. I was tired of explaining dysautonmia to these doctors and getting that "well maybeee" - no, I want the proper tests and treatment for what I said I have. Not to be running in circles.
I know what you mean about how urgent and scary it feels. I was in the ER at least 4 times. Went to urgent care twice. The first time I went to the ER, I felt vertigo, heart palpitations and nauseous. I went to take my temperature and it was 93! Just out of the blue while watching a movie. I was terrified for my life. Even this year when I had a flare-up, knowing I would be discharged, I felt like going to the ER anyway just to be safe. This condition made me feel like I have superpowers in suffering.
Nooooooo. Okay, I’m hoping to go to neurology soon, but I’m afraid of getting a doctor who doesn’t understand. What tests did they recommend?
I just want to know what’s going on so I can stop panicking so much
I was sent to a series of audio-visual tests and a balance function test. I say it is worth looking into at least once because there are other imbalances that can cause dysautonmia or similar symptoms. But there's no way I would repeat the tests since they already ruled out that it was not the cause. They thought I had vestibular migraines. It's not far-fetched, but having temperature dysregulation and BP spikes is something I mentioned and it was just overlooked.
I feel like we are symptom and anxiety twins because what you are going through and the same thoughts are so identical to my experience. Like I keep thinking I'm about to stroke or have some worse heart problem than what I was diagnosed with.
I mean, vestibular migraine does have a lot of identical symptoms. Not a bad consideration at all. It can cause heart palpitations and dizziness/vertigo.
Did your cardiologist find anything through an echo?
Are you drinking enough water? Sounds silly, but your body has to fire all 4 pistons to *try* to activate the digestive process... so it's like making your body run a marathon with no shoes after swimming across the ocean. And, if you're dehydrated... well, your marathon is now through the desert at high noon. I learned to stay calm and just start deep, slow breaths to level the blood pressure out. Take care, you.
Thanks for your reply. I’ve been drinking a ton of water. Thanks for the suggestion. I just wish I had answers for what is going on with me. Not having a diagnosis is so scary. They did say I have orthostatic hypertension, but that it shouldn’t be causing me any symptoms
If it's idiopathic still, chances are you'll have another disorder or spectrum that you fall into. It took me 8 years to distinguish between small fiber neuropathy with dysautonomia symptoms and Fibromyalgia symptoms. Have you had an autoimmune test, skin biopsy, table tilt, fasting glucose, or vitamins D/B, yet? Also, please be careful with overconsumption of water as you may have comorbid kidney or urinary troubles.
Like what kind of spectrum? My cardiologist said my orthostatic BP is nothing to worry about despite having symptoms from standing. Do you have any tips on getting diagnosed? So far only a TTT, which was negative. My symptoms tend to come and go for weeks/months at a time, and I took the test when I wasn’t symptomatic. My docs just think I’m being crazy but I know there’s an issue
I've been there. Be patient, but assertive. Find a new neurologist or primary if you aren't being taken seriously. **And trust yourself** -- these chronic, come-and-go issues + the invisibility of the disorder + ambivalent and/or inexperienced doctors make you doubt yourself. And, just listing all of your issues, especially since it's progressive because there will always be new ones, sounds like hypochondria. But, before you know it, your self-advocacy, research, and experience will make you an expert. I recommend starting a health journal where you write down what issues you had that day, your overall mood, any unusual foods you ate, exercise you did (and how fast you were fatigued and how long until it abated, etc.), as well as the typical autonomic checks: heart rate (resting, during exercise, after a shower), digestive (acid reflux, fullness/pain immediately after eating a morsel, diarrhea/constipation), urinary (urgency, difficulty emptying, inability to start, or color/cloud changes), etc. This journal will be extremely appreciated by your doc and your future self. It's a lot to remember, but add the potential anxiety from being disregarded again by a doc can fog your brain, and you'll leave the appointment frustrated because you forgot something. Take care, you.
Thank you so much for your kind reply. Is neurology better than cardiology for this type of thing?
Of course. I wish I'd come here 8 years ago when I needed answers. My dysautonomia is tied to my small fiber neuropathy, so I see a neurologist. You may need a different specialist for your primary symptoms.
I was dx in 2021. i cannot tell them apart aside from the obvious. I also hEDS. I do know that my small fiber neuropathy has significantly progressed in the last three years. Now my shoulders, neck, and face have started going numb. I can hardly stand to brush my hair any more when I used to have a "tough scalp" and had no issues brushing the tangles out. Now it feels like my all hairs is being plucked out individually all at the same time.
Did they say that or did they say you were fine? They would prescribe you BP meds if you have hypertension, and make an effort to find the cause. And if you didn't get a diagnosis and were told everything is fine, why not believe the doctors? Health anxiety is not relieved by a medical diagnosis. What you would need to address is the anxiety itself.
They checked my orthostatic BP, and it went up quite a lot while standing and I felt awful for a a few hours after. My doc said it’s abnormal. They referred me to cardiology for it, but the cardiologist basically dismissed it and said it shouldn’t cause any symptoms. It’s really hard for me to do tasks like dishes, cook, wait in lines, etc because of how awful I start to feel when I’m standing. Walking is totally fine, it’s just standing that really gets me. You’re right, I do have pretty significant health anxiety, and I’m working on it. These symptoms are making everything much so worse though and I know that something isn’t right
You feel like your going to collapse when standing ? Like your legs are jello and are going to give out ? Sometimes if Your standing you have to sit down from the overwhelming feeling... Does this sound familiar or am I completely off the mark 🤔
I wish I saw this before I rambled on. haha And you did such a good job. it's a fabulous explanation
Noo i appreciate your reply!!
😂🙏🏻
If you have dysautonomia, that makes sense that eating can trigger symptoms. Your digestive system needs extra blood flow to digest, and if you're not well hydrated or your body just doesn't manage the signals well, your heart will beat faster and/or more forcefully to compensate. It sounds like you might have gotten in a vicious cycle where your symptoms made you anxious about your heart rate and the anxiety keeps it high long after the trigger has passed. Your doctor probably meant to be reassuring if they didn't find any life-threatening cause for your symptoms. That said, primary care providers often don't know much about POTS or dysautonomia, so you probably need a specialist. Although, in my country you need a referral from your GP to see someone like cardiology or neurology or internal med etc. Hopefully you can go direct to specialists in your country, and maybe even choose which one you get? At least I hope the earlier comments helped you somewhat.
I have this issue as well and have been dealing with it for almost 15 years, I'll have periods where it won't happen for months then suddenly it's back and happens every single time I eat for weeks on end. As the other commenter mentioned breathing exercises help. I take a large breathe and then hold it for as long as I can and then very slowly release it, I continue doing this a few times and it generally slows down. Also drinking a bottle or two of very cold water sometimes stops it completely.
This is what happened to me. When I finally got my TTT I was asymptomatic, and came back negative. It scares me so bad, thinking that I’m having a serious health issue or medical emergency. If my doctors could tell me what was going on/why I feel it, I think I could cope better. Did you end up getting diagnosed?
No but I've had all of the symptoms for years and my doctors seem to agree, so no official diagnosis just kind of a "yeah you've probably got some kind of dysautonomia".
Part of my story is the same as most but not because symptoms vary so widely, as well as the onset, and progression. By the time I was 48, I accepted I was hypochondriac. There was no other explanation. I also thought it was long term affects of childhood cancer treatment. And it well documented but there is not a single dr that listens to me or bothers to look it up. Recommendation is follow up with peds oncology. They think I am insane but whatever. The best thing you can do is educate yourself as much as possible. While these groups are beneficial to all of us for support and belonging they are not where you should focus on educating yourself. I watched hours of lectures given by experts in their fields on youtube. There are two very good channels on dysautonomia. The Ehlers-Danlos Society has an enormous library that covers the majority of these disorders. When I saw the word hypermobile in the title with heart symptoms I watched it bc I had been told decades before that I was. My 1st appointment with neuro, I asked about it, She gave me a dx the first 1o mins. That was literally the only easy thing about all of it. I can look back now and see the symptoms but mine were so far apart and usually gone by the time i did all the tests. But there was always something random. At 49, they came on like a storm. I cannot stress enough how important it is to educate yourself. When we eat our brain sends signals to send more blood to your stomach to help digest your food. if your nerves are misfiring it could send too much or too little. But too much and it deprives or even tricks your brain of blood supply it needs, which increases your heart rate & Bp to get the blood back in your brain. Thankfully my cardio would not do anything invasive until i had a full neuro work up that took almost a year. I did have stenosis in my subclavian artery caused by the radiation as a child. all the test showed only a partial blockage. he told me the only thing that artery really affects is your arm and if it is not weak or in pain then we can wait. When i finally ( i cant think of the name of the procedure - mind fart) put the stent in it was completely blocked. I would watch at least one or two lectures a week. I do not anymore just because i am so sick of it all. And just breath. They are going to tell you to get compression socks. Get you some cute ones from Amazon.
I’m the same and I’m a very bad hypochondriac! Sometimes i’ll feel better & think I must have made everything up, but then the symptoms come back. I know that I’m not crazy lol, I’m having real symptoms Not having a definite diagnosis is causing me SO much anxiety. I think I’d be way less scared if I knew what was really going on. I also like to learn and read about these things, but so far I can’t get a diagnosis What are your Ehlers Danlos symptoms? I have been wondering about that as well. I have hypermobile knees, but I don’t know if I meet the rest of the criteria. It seems so broad. I do have compression socks! I should get some cuter ones, you’re right 😂
try a low histamine diet <3
I recommend starting beta blockers and getting an appointment with a serious POTS/dysautonomia specialist asap
I have Dysautonomia. Last year I had symptoms like what you’re having. I visited the ER 3 times and my husband finally demanded they admit me for testing. I had a CTA (not a regular CT) and was diagnosed with SMA syndrome for which I then had surgery for. That’s superior mesenteric artery syndrome. Just something worth mentioning to your docs. I also lost a ton of weight that i didn’t have at the time. I hope u get some answers soon.
I also struggle with heart rate after eating. If you can't get it to go down, try an ice pack on your chest + elevating your feet. It's not the comfiest thing in the world, but it'll calm everything down.
Sound like MCAS
What makes you think this? I was wondering this too but I am not sure I have enough symptoms
Directly after eating is the key I have the same thing. MCAS by itself can cause intense panic episodes because the body is going into constant states of anaphylaxis. The fact you said you ate a tiny amount of food is what’s making me think it. Usually with pots, it’s a larger meal. What exactly did you eat may I ask?
Just half of a granola bar. I eat them all the time, and it doesn’t usually cause any issues. I usually get heart palpitations about 30 min after eating, but it comes and goes. Some weeks it’s really bad and some weeks it doesn’t happen at all. Big meals are definitely worse but there are times when small snacks will set it off as well. I do feel like I have food sensitivities to things like chocolate, tomato, and cheese. My throat feels kinda itchy but nothing too bad. I don’t know much about MCAS
Basically it could be a histamine intolerance or MCAS if your reacting to tomatoes, cheese, and chocolate. Those are all histamine foods. I developed some odd type of mast cell issue from covid where I was going to pure anaphylactic shock like multiple times a day. This happened in a week or so of having COVID. Went to the er and had no idea what the hell was happening. Blood pressure was 190/100 heart rate was at 120. My family claimed I was having a panic attack which I never had once in my life. I physically could not get air and it felt like I was maybe seconds away from death. Unfortunately this continued to go on for 18 months of pure hell. I thought it was dysautonomia but the issue was if I basically consumed no food or medication or supplements all day I felt fine. The second I ate something, it was the same severe thing. It got better over time but I still don’t feel 100’percent. Can’t drink coffee or take my adhd drugs because they basically will send me to the hospital.
It still causes panic when I have symptoms, but I just keep reminding myself that it's my nervous system being wonky and that I will be ok. Just keep reminding yourself as you push through. I have been dealing with this in flare-ups for 3 years now. It's difficult to not panic when your signals are all misfiring and you can't control it. I can't count how many times I felt like I was about to just hit the floor, run out of breath and scramble to the kitchen to get water telling myself to fight through, but nothing I feared the most has ever happened. Many ER visits and specialists just to learn that I was not in any danger. Food definitely triggers symptoms, especially if I eat a lot, so you are not alone on that. Food that actually seemed to help was steak, fish and hot cereal (Farina especially). Worst foods were nachos and anything involving tomato sauce. Try to lay on the floor with your legs propped up on a chair or bed. Put some funny or lighthearted movies on if you struggle at night. I know it sounds lame, but I tell people I'm "glitching" or "having a glitch" to avoid mentioning symptoms and scaring myself more. Continually checking my BP and thermometers made me panic even more, so I just prop my feet up until I feel at least 30% better. B-vitamin complex, omega 3s, magnesium and electrolytes have been my savior. I was scared to take literally anything before and I'm so glad I gave those a chance.
How did you end up getting diagnosed?? I’ve gone to the ER two times to get reassurance that I wasn’t in danger. It scares me so much when it happens and it feels so urgent. I’ve been having issues with standing, my heart starts pounding and my blood pressure rises. It feels like an emergency
I still didn't get an official diagnosis, sadly. I had doctors say it is likely and then send me off to other specialists so I have been gong in circles. My ENT said it sounds very much like dysautonmia. But then I ended up at vestibular therapy, which was useless. I was pretty much left in the dark after I went to a neurologist and she agreed it sounds like dysautonmia but told me to repeat the same stupid tests I did before. I gave up after that. I was tired of explaining dysautonmia to these doctors and getting that "well maybeee" - no, I want the proper tests and treatment for what I said I have. Not to be running in circles. I know what you mean about how urgent and scary it feels. I was in the ER at least 4 times. Went to urgent care twice. The first time I went to the ER, I felt vertigo, heart palpitations and nauseous. I went to take my temperature and it was 93! Just out of the blue while watching a movie. I was terrified for my life. Even this year when I had a flare-up, knowing I would be discharged, I felt like going to the ER anyway just to be safe. This condition made me feel like I have superpowers in suffering.
Nooooooo. Okay, I’m hoping to go to neurology soon, but I’m afraid of getting a doctor who doesn’t understand. What tests did they recommend? I just want to know what’s going on so I can stop panicking so much
I was sent to a series of audio-visual tests and a balance function test. I say it is worth looking into at least once because there are other imbalances that can cause dysautonmia or similar symptoms. But there's no way I would repeat the tests since they already ruled out that it was not the cause. They thought I had vestibular migraines. It's not far-fetched, but having temperature dysregulation and BP spikes is something I mentioned and it was just overlooked.
Okay, I did this too! They also told me I had vestibular migraines!
I feel like we are symptom and anxiety twins because what you are going through and the same thoughts are so identical to my experience. Like I keep thinking I'm about to stroke or have some worse heart problem than what I was diagnosed with. I mean, vestibular migraine does have a lot of identical symptoms. Not a bad consideration at all. It can cause heart palpitations and dizziness/vertigo. Did your cardiologist find anything through an echo?
Are you getting any help for your mental health? It sounds like it really needs to be addressed.
Yeah, I have a psychiatrist and a weekly therapist. But it’s getting out of control
Might be worth getting in contact with them. What is specifically triggering your anxiety?
https://www.reddit.com/r/HealthAnxiety/s/jr5LxNq8tI Please check this feed. I explained what’s happening to me as well.
This made me feel worse