I am concerned that I’ve always ate a high sodium diet, but now my food is coated with salt. I switched to sea salt hoping that will keep me on my feet. I’ve also increased other minerals and a lot of water. It’s helping to keep me from blacking out. Sometimes I have no warning other times it’s a tug in my head and I go into a tunnel before getting pulled to the floor. I have seconds to get to a safe place. The tilt table test confirmed POTS and Dysautonomia.
Former nurse here trying to advocate for myself. I had an aborted surgery due to crashing under anesthesia. Anesthesiologist said sounds like autonomic dysfunction after we talked about all my symptoms.Was sent to Neuro for eval after 2 decades plus of symptoms. Neuro sent me to cardio for eval and tilt table test. Cardio said he's never found TTT to be very good at Dx autonomic dysfunction and put me on Florinef. Neuro also wants all my MRI and CT scans from Ortho. I've had surgeries for B carpal tunnel, L cubital tunnel, C3-4-5 disc replacements (all with no problem with anesthesia). I am waiting on L3-4-5 fusion which was aborted. I also had a spontaneous tear of my R bicep. Scan revealed a complete SLAP tear of the rotator cuff. Neuro also wants MRI and CT scan with and without contrast of the brain. I've never had a car accident. This just all happened over the course of my nursing career, or so I thought. Opinion? Could it be something more? Do I really need that tilt table test? What should I do next? Continue meds to have my surgeries and be happy with that, or keep trying to find an answer? I can barely walk due to back pain and am spending most of my life on the couch. This is so very difficult when specialties are booking 5 months out! I'm incredibly depressed as you can imagine.
My dysautonomia symptoms came on after a bad virus. I didn't realize it so much at the time, but looking back years later, I see how insidious the onset was. I'm avoiding anesthesia until I have a better idea of what's going on. Getting answers has not been easy.
I feel you I am a nurse too and struggle everyday and in fear of losing my job. I’m labeled as crazy or unable to do my job and my clinical judgment is questioned. It is the worse feeling in the world.
I have IST since I was a child but it wasn't diagnosed until one year ago because in my country there's not enough information. I went to the hospital many times and they've always said that I had anxiety, that maybe it was bc I'm a woman so...they send me to home always. But I went with a cardiologist who always hear what I say and believed in me and with a lot of tests, finally my diagnose was IST. I wasn't a liar, all this time even resting I reached 130bpm, that was crazy. Now I'm on meds and somedays everything seems better but I still have dark days. I only passed out one time in 2019 but when I arrived to the hospital my BPM were okay, unfortunately my condition didn't appear all the time so that's why only with holter monitor they found what it was. Thank you for talk about these conditions it means a lot.
I have Neurocardiogenic Dysautonomia and have been in the hospital at UNC several times this year. I'm getting a pacemaker Tuesday for my bradycardia, but do have SVT as well. Clonodine patches help regulate my BP. The anxiety is nearly unbearable. I take benzodiazapines for when I have these adrenaline dumps. Insomnia is an issue and GI problems. It's a nightmare to live with.
@Subkubchik The pacemaker helped a lot. No more passing out. Still can't regulate my GI system and body temp. It could be 80 out and I'm freezing cold. I have a fib now and have had 2 strokes. I'm on 13 medications. It just doesn't seem to end, although some things are better.
This video is so educational! It makes me feel not crazy! I have to wait a year for autonomic testing, is there any functional neurology in Mass? Can you do a segment on autonomic dysfunction in relation to autoimmunity, ex. Hashimotos. And also can you do a segment how to keep a career with this? Or ways to ask for accommodations? Please help, been struggling for few years, been told it’s in my head, or I’m normal because my heart rate does not sustain 220-age, so 187 so I’m fine. Umm I’m not fine.
try being in the hills sticks of missouri few drs let alone specialists. Honestly im lucky this came on at 58-59 im almost 64 now & can qualify for medicare & with social security at 65 so just hanging on till then did get state coverage but it may not last till next year. I honestly dont think i can work Can't work standing over 4-5 hours every couple of days. When drive to see psychiatrist 75 miles I struggle to get home guess now i understand why severe pooling legs abdomen. Ive been a nurse floor nurse 35 years I cant take heat now the humidity gets so bad with high 80-90+ I couldnt stand to wear the support binder or legg stockings. Most of summer or would have to put them on at work & remove them before leaving. I really think Im disabled Just sqeezing to get thru till 2024. due to Loss of income i now drive 20+ year old car & truck & can't afford airconditioner running in house except for 95+° weather (old house) So much more research should go towards pots.
I have myasthenia gravis and CRPS (80% of the identified regions) and a variety of other neurological problems. Primary issue at the moment is to deal with the unrelenting pain of CRPS that responds fairly well to analgesics such as Percocet, but the pain has not been put in check for almost a year. How do you treat diseases that are coming from and/9r impacting the peripheral and autonomic parts of the body. I am functioning at about 20-25% up time and have no life. How would you treat (I'm giving you just the very tip of the ice fury, but think autonomic dysregulation components, pain, weakness and fatigue, optic neuritis, swallowing and breathing issues, heart rate fluctuations typically from 47 to 85 to 157 where it remains for awhile, then drops back down after a few minutes and repeats, BP that is erratic at times, etc. as some of the most intrusive along with the intractable pain!
I was having near-syncope (going from sitting to standing) and it was dramatically improved with adderall. I was lucky my ADHD diagnosis came with a bonus of raising my BP to normal. Since then, I've seen adderall listed in the book, The Dysautonomia Project.
I was 30 yr add the med helps me get up & work but i then have muscle cramping every eve. So take fast acting b12 tablets Looks bad on labs with high b12 levels but b vitamin is water soluble so It doesn't accumulate to toxic levels like the fat soluble ones you pee alot of the excess out.
My syncope has nothing to do with standing or lying down. I originally thought it was caused by medication. It has progressed to the point where it can be triggered by eating. I get shaky, sweaty, nauseous, bp drops severely low 50s/30s, pale, and my arms feel extremely heavy. I make my way to the bathroom, either crawl or walk. Throw up, bm, then it starts to pass. Sometimes I am so tired, I sleep on the bathroom floor for 10-20 minutes. The whole episode lasts about a half hour. I have no idea what this would be called.
All of these problems are d/t physical damage to brainstem, cerebellum, and blood vessels in the upper cervical spine. Not so complicated. If 1 of these structures is damaged can cause 1 to all dysautomia of the body. Chiari,tethered cord, medullary syndromes. You don't have 10 different health issues you probably have 1. Fix your neck. If you are on the hypermobility spectrum then you are 5 times more likely to have cervical instability causing damage to cns and cranial nerves. What signals blood vessels to dilate or spasm...vagus nerve left side of neck at c1c2...bang...that also explains tachicardia. With proper scanning systems can see to diagnose. Supine scans are bull. Need upright and dynamic. That's it. Simple...syncope and pots mis signal to heart and blood vessels. Stop looking down at your phone that's a big help.
@@nektariosandmagdalena4985 Yes absolutely...all your unexplained and changing of symptoms are nerve related more than likely. Adrenaline dumps? Heart Palpitations, BP, got probably problem on left should/neck. Gut related issues right side neck/shoulder.
Can am functional neurologist diagnose dysautonomia or just work with you if dysautonomia has been ruled out? If there's no functional neurologist in your area, what other kind of doctor can you see to diagnose & treat/ rule out dysautonomia or other nuro issues? Neither my cardiologist nor neurologist say they can.
You mentioned hypovolomic, neuropathic and hyperadrenergic pots. Also mentioned vestibular and autoimmune. Do you know how we can test to tell which kind we have? I know the rx protocol is different for each kind. I just started on florinef and I don't get brain freeze belt around my head feeling anymore and significant improvement with shortness of breath, but I can't use my hands every night after eating and laying down to watch TV or movies now and it scares me.
I am concerned that I’ve always ate a high sodium diet, but now my food is coated with salt. I switched to sea salt hoping that will keep me on my feet. I’ve also increased other minerals and a lot of water. It’s helping to keep me from blacking out. Sometimes I have no warning other times it’s a tug in my head and I go into a tunnel before getting pulled to the floor. I have seconds to get to a safe place. The tilt table test confirmed POTS and Dysautonomia.
the incompetence expressed by so called "experts" is absolutely upsetting to witness and endure.
Former nurse here trying to advocate for myself. I had an aborted surgery due to crashing under anesthesia. Anesthesiologist said sounds like autonomic dysfunction after we talked about all my symptoms.Was sent to Neuro for eval after 2 decades plus of symptoms. Neuro sent me to cardio for eval and tilt table test. Cardio said he's never found TTT to be very good at Dx autonomic dysfunction and put me on Florinef. Neuro also wants all my MRI and CT scans from Ortho. I've had surgeries for B carpal tunnel, L cubital tunnel, C3-4-5 disc replacements (all with no problem with anesthesia). I am waiting on L3-4-5 fusion which was aborted. I also had a spontaneous tear of my R bicep. Scan revealed a complete SLAP tear of the rotator cuff. Neuro also wants MRI and CT scan with and without contrast of the brain. I've never had a car accident. This just all happened over the course of my nursing career, or so I thought. Opinion? Could it be something more? Do I really need that tilt table test? What should I do next? Continue meds to have my surgeries and be happy with that, or keep trying to find an answer? I can barely walk due to back pain and am spending most of my life on the couch. This is so very difficult when specialties are booking 5 months out! I'm incredibly depressed as you can imagine.
Sounds like Ehlers Danos Syndrome and dysautonomia. Good luck to you. I know how much this sucks with problems in so many different parts of the body.
My dysautonomia symptoms came on after a bad virus. I didn't realize it so much at the time, but looking back years later, I see how insidious the onset was. I'm avoiding anesthesia until I have a better idea of what's going on. Getting answers has not been easy.
I feel you I am a nurse too and struggle everyday and in fear of losing my job. I’m labeled as crazy or unable to do my job and my clinical judgment is questioned. It is the worse feeling in the world.
With the injuries and disc problems, I would get evaluated for Ehlers-Danlos Syndrome.
@@ReineDeLaSeine14 I was going today the same thing.
I have IST since I was a child but it wasn't diagnosed until one year ago because in my country there's not enough information. I went to the hospital many times and they've always said that I had anxiety, that maybe it was bc I'm a woman so...they send me to home always. But I went with a cardiologist who always hear what I say and believed in me and with a lot of tests, finally my diagnose was IST. I wasn't a liar, all this time even resting I reached 130bpm, that was crazy. Now I'm on meds and somedays everything seems better but I still have dark days.
I only passed out one time in 2019 but when I arrived to the hospital my BPM were okay, unfortunately my condition didn't appear all the time so that's why only with holter monitor they found what it was. Thank you for talk about these conditions it means a lot.
I have Neurocardiogenic Dysautonomia and have been in the hospital at UNC several times this year. I'm getting a pacemaker Tuesday for my bradycardia, but do have SVT as well. Clonodine patches help regulate my BP. The anxiety is nearly unbearable. I take benzodiazapines for when I have these adrenaline dumps. Insomnia is an issue and GI problems. It's a nightmare to live with.
I hope you doing better now😢
As a person with dysautonomia I can imagine how bad it can be sometimes.
@Subkubchik The pacemaker helped a lot. No more passing out. Still can't regulate my GI system and body temp. It could be 80 out and I'm freezing cold. I have a fib now and have had 2 strokes. I'm on 13 medications. It just doesn't seem to end, although some things are better.
This video is so educational! It makes me feel not crazy! I have to wait a year for autonomic testing, is there any functional neurology in Mass? Can you do a segment on autonomic dysfunction in relation to autoimmunity, ex. Hashimotos. And also can you do a segment how to keep a career with this? Or ways to ask for accommodations? Please help, been struggling for few years, been told it’s in my head, or I’m normal because my heart rate does not sustain 220-age, so 187 so I’m fine. Umm I’m not fine.
try being in the hills sticks of missouri few drs let alone specialists.
Honestly im lucky this came on at 58-59 im almost 64 now & can qualify for medicare & with social security at 65 so just hanging on till then did get state coverage but it may not last till next year.
I honestly dont think i can work
Can't work standing over 4-5 hours every couple of days. When drive to see psychiatrist 75 miles I struggle to get home guess now i understand why severe pooling legs abdomen.
Ive been a nurse floor nurse 35 years
I cant take heat now the humidity gets so bad with high 80-90+ I couldnt stand to wear the support binder or legg stockings. Most of summer or would have to put them on at work & remove them before leaving.
I really think Im disabled
Just sqeezing to get thru till 2024.
due to Loss of income i now drive 20+ year old car & truck & can't afford airconditioner running in house except for 95+° weather (old house)
So much more research should go towards pots.
Great discussion. Thank you.
Thank you.
I have myasthenia gravis and CRPS (80% of the identified regions) and a variety of other neurological problems. Primary issue at the moment is to deal with the unrelenting pain of CRPS that responds fairly well to analgesics such as Percocet, but the pain has not been put in check for almost a year. How do you treat diseases that are coming from and/9r impacting the peripheral and autonomic parts of the body. I am functioning at about 20-25% up time and have no life. How would you treat (I'm giving you just the very tip of the ice fury, but think autonomic dysregulation components, pain, weakness and fatigue, optic neuritis, swallowing and breathing issues, heart rate fluctuations typically from 47 to 85 to 157 where it remains for awhile, then drops back down after a few minutes and repeats, BP that is erratic at times, etc. as some of the most intrusive along with the intractable pain!
I was having near-syncope (going from sitting to standing) and it was dramatically improved with adderall. I was lucky my ADHD diagnosis came with a bonus of raising my BP to normal. Since then, I've seen adderall listed in the book, The Dysautonomia Project.
I was 30 yr add the med helps me get up & work but i then have muscle cramping every eve. So take fast acting b12 tablets
Looks bad on labs with high b12 levels but b vitamin is water soluble so
It doesn't accumulate to toxic levels like the fat soluble ones you pee alot of the excess out.
Wish I could watch your video however you're front of mini blinds which trigger a migraine along with other NOH triggers
My syncope has nothing to do with standing or lying down. I originally thought it was caused by medication. It has progressed to the point where it can be triggered by eating. I get shaky, sweaty, nauseous, bp drops severely low 50s/30s, pale, and my arms feel extremely heavy. I make my way to the bathroom, either crawl or walk. Throw up, bm, then it starts to pass. Sometimes I am so tired, I sleep on the bathroom floor for 10-20 minutes. The whole episode lasts about a half hour. I have no idea what this would be called.
Sounds like MCAS , I have that and it’s just as you described
@@kari8187 Have you been given a specific diagnosis
@@MelissaSue EDS POTS MCAS
All of these problems are d/t physical damage to brainstem, cerebellum, and blood vessels in the upper cervical spine. Not so complicated. If 1 of these structures is damaged can cause 1 to all dysautomia of the body. Chiari,tethered cord, medullary syndromes. You don't have 10 different health issues you probably have 1. Fix your neck. If you are on the hypermobility spectrum then you are 5 times more likely to have cervical instability causing damage to cns and cranial nerves. What signals blood vessels to dilate or spasm...vagus nerve left side of neck at c1c2...bang...that also explains tachicardia. With proper scanning systems can see to diagnose. Supine scans are bull. Need upright and dynamic. That's it.
Simple...syncope and pots mis signal to heart and blood vessels. Stop looking down at your phone that's a big help.
Smart
Would this also cause the adrenaline dumps and BP fluctuations highs and lows?
Hi 👋
@@nektariosandmagdalena4985
Yes absolutely...all your unexplained and changing of symptoms are nerve related more than likely.
Adrenaline dumps? Heart Palpitations, BP, got probably problem on left should/neck. Gut related issues right side neck/shoulder.
@@nektariosandmagdalena4985overstimulated vegus nerve
Can am functional neurologist diagnose dysautonomia or just work with you if dysautonomia has been ruled out? If there's no functional neurologist in your area, what other kind of doctor can you see to diagnose & treat/ rule out dysautonomia or other nuro issues? Neither my cardiologist nor neurologist say they can.
Yes, a functional neurologist can diagnose. Please contact us - we see many out-of-state patients.
You mentioned hypovolomic, neuropathic and hyperadrenergic pots. Also mentioned vestibular and autoimmune. Do you know how we can test to tell which kind we have? I know the rx protocol is different for each kind. I just started on florinef and I don't get brain freeze belt around my head feeling anymore and significant improvement with shortness of breath, but I can't use my hands every night after eating and laying down to watch TV or movies now and it scares me.
Syncope with heart stop?