1. < Heart Rhythm Conditions

Breathless palpitation dizzy. Cant stand or sit.

Posted by rajoy1 @rajoy1, Oct 28, 2021

Hi i am 55yrs, male My bp drops by 15mm when i stand. HR goes up 20 to 30. Breathless dizzy. Been 1 year. No diagnosis by specialists.
Ecg, bloods, xray normal. Always weak tired. Worse now. Bedridden. Cant even sit. Stand Dizzy. Nausea. Weak. Cant breathe, block. Cant talk also. Pressure in chest, throat, ears, head. Ears ringing continuously. Few months ago scan stomach hiatal hernia. Take antacid helps abit. Now 2 problems. What are these symptoms? Pls advice what to do. Thanks

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

yellowdoggirl | @yellowdoggirl | Oct 29, 2021

Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively healthy heart. This went on for at least 5 years.
Recently my PCP wondered if it might be dysautonomia and so did my cardiologist. I had a tilt table test resulting in a provoked (nitroglycerine) "Type 3 Pure vasopressor response" meaning my BP dropped to where I was passing out with heart rate not increasing.
This is a kind of dysautonomia.
I am instructed to eat 3-5 grams of salt and drink at least 3 liters of fluids/ day. This keeps my formerly high BP up to a normal level.
There are many more possible symptoms, some of which I have.
I have an appointment with a neurologist at my state University medical center, the only dysautonomia doc in the state.
You could ask your doctor's about dysautonomia.
See a neurologist versed in this.
And look at this website:

https://www.dysautonomiainternational.org/page.php?ID=95

There's a list of doctors on there and a lot of information.

I read a book, "THE SOUND OF A SNAIL EATING" which is an account of a woman's passage through a year of dysautonomia. She couldn't sit up either.
Best of luck to you! Many people never heard of this. Find a specialist in it, others may not recognize it and call it "just anxiety"...

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 29, 2021

Hello @rajoy1, I would like to add my welcome to Connect along with @yellowdoggirl and others. In addition to the suggestions by @yellowdoggirl, you might also find the following discussion helpful.

Treatment options for Dysautonomia: https://connect.mayoclinic.org/discussion/in-2011-i-was-diagnosed-with-dysautonomia-it-is-not-pots-but/

Have you thought about seeking help or a second opinion at a major teaching hospital or health facility like the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

REPLY
1 reply
rajoy1 | @rajoy1 | Oct 29, 2021
In reply to @yellowdoggirl "Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively..." + (show)
@yellowdoggirl

Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively healthy heart. This went on for at least 5 years.
Recently my PCP wondered if it might be dysautonomia and so did my cardiologist. I had a tilt table test resulting in a provoked (nitroglycerine) "Type 3 Pure vasopressor response" meaning my BP dropped to where I was passing out with heart rate not increasing.
This is a kind of dysautonomia.
I am instructed to eat 3-5 grams of salt and drink at least 3 liters of fluids/ day. This keeps my formerly high BP up to a normal level.
There are many more possible symptoms, some of which I have.
I have an appointment with a neurologist at my state University medical center, the only dysautonomia doc in the state.
You could ask your doctor's about dysautonomia.
See a neurologist versed in this.
And look at this website:

https://www.dysautonomiainternational.org/page.php?ID=95

There's a list of doctors on there and a lot of information.

I read a book, "THE SOUND OF A SNAIL EATING" which is an account of a woman's passage through a year of dysautonomia. She couldn't sit up either.
Best of luck to you! Many people never heard of this. Find a specialist in it, others may not recognize it and call it "just anxiety"...

Jump to this post

Hi @yellowdoggirl, thank you so much for replying. Yes i was on salt tablets due to low blood volume. But now with gastro issues cant take them. Neuro and cardio cleared me 6 mths ago. Only gastro now. I feel this is dysautonomia related too. I am in Singapore. Hardly any discussions here about this. Wish US medical can help me. Dont think thats possible. Are you still sick or recovered? The girl in the book is she better? Any remedy that worked? Thanks again for being so kind. Take care and be safe.

REPLY
1 reply
rajoy1 | @rajoy1 | Oct 29, 2021
In reply to @johnbishop "Hello @rajoy1, I would like to add my welcome to Connect along with @yellowdoggirl and others...." + (show)
@johnbishop

Hello @rajoy1, I would like to add my welcome to Connect along with @yellowdoggirl and others. In addition to the suggestions by @yellowdoggirl, you might also find the following discussion helpful.

Treatment options for Dysautonomia: https://connect.mayoclinic.org/discussion/in-2011-i-was-diagnosed-with-dysautonomia-it-is-not-pots-but/

Have you thought about seeking help or a second opinion at a major teaching hospital or health facility like the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Jump to this post

Hello sir, thank you for replying. I am in Singapore. How can i get help from Mayo clinic?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 29, 2021
In reply to @rajoy1 "Hello sir, thank you for replying. I am in Singapore. How can i get help from..." + (show)
@rajoy1

Hello sir, thank you for replying. I am in Singapore. How can i get help from Mayo clinic?

Jump to this post

@rajoy1, Sorry, I did not realize you were not in the U.S. Mayo Clinic has affiliates around the world and I see from a 2015 news article that there is one in Singapore - Raffles Medical Group -- https://newsnetwork.mayoclinic.org/discussion/raffles-medical-group-becomes-first-member-from-asia-to-join-the-mayo-clinic-care-network/

I'm wondering if they may be able to help you?

REPLY
yellowdoggirl | @yellowdoggirl | Oct 29, 2021
In reply to @rajoy1 "Hi @yellowdoggirl, thank you so much for replying. Yes i was on salt tablets due to..." + (show)
@rajoy1

Hi @yellowdoggirl, thank you so much for replying. Yes i was on salt tablets due to low blood volume. But now with gastro issues cant take them. Neuro and cardio cleared me 6 mths ago. Only gastro now. I feel this is dysautonomia related too. I am in Singapore. Hardly any discussions here about this. Wish US medical can help me. Dont think thats possible. Are you still sick or recovered? The girl in the book is she better? Any remedy that worked? Thanks again for being so kind. Take care and be safe.

Jump to this post

Hi again @rajoy 1, I am just at the start of this path, but was never too badly off. The salt helps me a great deal. I think the person in that book did get better, but I can't remember how.
It sounds like your troubles are more difficult than mine. I do hope you find some solutions!

REPLY
joannemm34293 | @joannemm30809 | Oct 30, 2021
In reply to @yellowdoggirl "Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively..." + (show)
@yellowdoggirl

Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively healthy heart. This went on for at least 5 years.
Recently my PCP wondered if it might be dysautonomia and so did my cardiologist. I had a tilt table test resulting in a provoked (nitroglycerine) "Type 3 Pure vasopressor response" meaning my BP dropped to where I was passing out with heart rate not increasing.
This is a kind of dysautonomia.
I am instructed to eat 3-5 grams of salt and drink at least 3 liters of fluids/ day. This keeps my formerly high BP up to a normal level.
There are many more possible symptoms, some of which I have.
I have an appointment with a neurologist at my state University medical center, the only dysautonomia doc in the state.
You could ask your doctor's about dysautonomia.
See a neurologist versed in this.
And look at this website:

https://www.dysautonomiainternational.org/page.php?ID=95

There's a list of doctors on there and a lot of information.

I read a book, "THE SOUND OF A SNAIL EATING" which is an account of a woman's passage through a year of dysautonomia. She couldn't sit up either.
Best of luck to you! Many people never heard of this. Find a specialist in it, others may not recognize it and call it "just anxiety"...

Jump to this post

I have a wide range of debilitating symptoms that come and go out of the blue and are totally debilitating. One cardiologist said I have dysautonomia but a tilt table test came back negative so it's definitely not what's listed as POTS on a form of disordernomia. And the 15 categories of dysautonomia I do not really fit into those categories so if I have to sort of know me it's not POTS or the other 15 categories of this autonomy. The wide-ranging forms of debilitating symptoms is horrifying. From a racing hard to visual disturbances to pins and needles in my extremities to bowel urgencies to wrap it blood pressure and pulse rate changes, to heat intolerance, to exercise intolerance and these episodes will be brought on out of the blue and there's no trigger that I can see. Several neurologists though have disagreed with disorder nomia diagnosis and said they believe it's full-blown chronic anxiety and panic attacks. Over 2 years of dozens upon dozens upon dozens of tests from neurologists to endocrinologist to cardiologist and I'm still at square one with what is really wrong with me and why my heart and my breathing and my bowels and my pulse rate and my vision all go haywire.

REPLY
lmisch1985 | @lmisch1985 | Nov 2, 2021
In reply to @yellowdoggirl "Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively..." + (show)
@yellowdoggirl

Hi @ rajoy1, I had similar, but different symptoms resulting in MANY tests regarding my relatively healthy heart. This went on for at least 5 years.
Recently my PCP wondered if it might be dysautonomia and so did my cardiologist. I had a tilt table test resulting in a provoked (nitroglycerine) "Type 3 Pure vasopressor response" meaning my BP dropped to where I was passing out with heart rate not increasing.
This is a kind of dysautonomia.
I am instructed to eat 3-5 grams of salt and drink at least 3 liters of fluids/ day. This keeps my formerly high BP up to a normal level.
There are many more possible symptoms, some of which I have.
I have an appointment with a neurologist at my state University medical center, the only dysautonomia doc in the state.
You could ask your doctor's about dysautonomia.
See a neurologist versed in this.
And look at this website:

https://www.dysautonomiainternational.org/page.php?ID=95

There's a list of doctors on there and a lot of information.

I read a book, "THE SOUND OF A SNAIL EATING" which is an account of a woman's passage through a year of dysautonomia. She couldn't sit up either.
Best of luck to you! Many people never heard of this. Find a specialist in it, others may not recognize it and call it "just anxiety"...

Jump to this post

You have vasovagal syncope
Or neurocarogeneic syncope that what the tilt table tests
You for. Did they discuss pacemaker treatment? I think you meant to type low instead of high bp all of
The symptoms could
Be explained by that. Your cardiologist didn’t know that? It’s usually in children I was diagnosed when I was 15, started having episodes
When I was 13, Mayo Clinic diagnosed me. I am 36 now and still have it. My pacemaker control it. I’m not a doctor but that what the tilt. Table test is for

REPLY
Please sign in or register to post a reply.