More than 30 Faints per Day (Had Covid)

[Steveno]

Hey guys this is a story about my dad who had Covid back in 2021. He's been having faint episodes for more than a year after coming out of covid. As of now he has over 30 episodes a day of fainting and this has change all of ours lives. We have been to so many doctors and everyone just seems to pass it over to the next. We did the table test and it came out good, we did heart exams and they all came out good as well, it seems like is neurological. Any tips, any help would be highly appreciated, it seems so hard to find an actual doctor that can help him get better from this.  

[Pistol]

@Steveno welcome to the forum, and I am so sorry your Dad and you have to go through this! 

Syncope ( Fainting ) can have many causes, dysautonomia being one of them. Often dysautonomia is triggered by a viral illness and can cause fainting. However, even if it is dysautonomia it can have different mechanisms and causes. Dysautonomia syncope can come from a sudden drop in BP upon standing, an increase in HR upon standing or even a decrease in circulation to the brain. If you tap on the Information Resources tab on the top of the main page you will find a directory of articles and informational sites, click on NCS to find more info about dysautonomia and Syncope, and also under the POTS tab there will be some mention of fainting. 

Another possible cause could be an irregular heart beat which does not have to be related to dysautonomia. Have they done a holter monitor on your DAD ( a device that is worn for several weeks that records the heart beat and alerts the patient and the doctor if there is an arrhythmic event )? A good cardiologist should do this anytime there is syncope. 

I had fainting and seizures from dysautonomia and it took several years for the doctors to pin point the cause. It was found to be related to dysautonomia after I had an event while hospitalized on an Epilepsy monitoring unit. They hooked me up for days to both an EEG recording device and a heart monitor, and a faint proved the cause to be dysautonomia. 

I am not sure where you live but I would try to find a syncope clinic. If you live in the US you could start by contacting your State University hospital or any major hospital near you. You can ask his PCP or cardiologist to be referred to a syncope specialist, or even check with his insurance. You can also click on the Physician tab at the top of the main page and see if there is a doctor listed near you, this is a list of doctors world wide that see dysautonomia patients. 

I hope they will come to the bottom of your Dad's problem soon, and please make sure he is safe! Syncope itself is not harmful, but the injuries we sustain from the falls can be! Please keep us informed on your Dad's progress!  

 

 

[MattyT]

Steveno, Wow! That's an amazing story and I can imagine it does have a very dramatic impact on your lives. Some thoughts and ideas that came to my mind as I read this:

• First, I wonder if they did a Holter monitoring on your dad? I agree with Pistol's suggestion that most cardiologists will use it. Also, I know from personal experience, that Holters can be fairly short for only a few days. Alternatively, they can be fairly long duration and stuck on your chest for up to a month or longer.
• If the first one was "normal" and they can't explain the fainting episodes, it seems very reasonable to ask that it be done again for a long time interval. I know from personal experience that my first Holter was "normal". My second Holter lasted for a month and was not even close to normal. It explained a lot of what was going on and eventually was critical to my care by an electrophysiologist. 
• You could seek additional insight from a cardiologist who specializes in electrophysiology. 
• It also seems reasonable to ask for a second opinion of another cardiologist or a neuroendocrinologist.
• Tilt table tests (TTT) can be very helpful sometimes. However, they will not always reveal the underlying issue and may not be necessary to make a diagnosis. My neuroendocrinologist said that we don't need to do one to make a diagnosis in my case.
• If cardiologists and neuroendocrinologists don't find anything, a good neurologist might help. I agree with your thoughts on that.
• This takes time and lots of patience. Because of COVID, there are many people who need help from these specialists. With that in mind, you can set up appointments with multiple specialists and ask to be put on their waiting list in case of cancellations. Then cancel the appointments that you don't need. I sometimes get appointments on short notice with busy specialists because I asked to be put on the cancellation list.
• This is a huge challenge for your family. Hang in there.

[Sarah Tee]

I recently watched a documentary in which someone was assessed for having multiple fainting episodes per day. He was admitted to hospital for a couple of days and monitored closely so the doctors could see what was happening when he fainted as he was hooked up to various monitors. It was a bit like a sleep lab in that he was monitored on video by a nurse so that immedicately when he had an episode they could come in and check his responses as well as having the monitor recordings.

I hope you can find someone to help. It can be a very long journey.

This is a UK organistaion that helps people with all kinds of fainting:

https://heartrhythmalliance.org/stars/uk/

It publishes a lot of good information. I would suggest reading through the site and watching some of the lectures and patient talks (free but you need to register). I think anyone can join whether they live in the UK or not. You and your family may have an “aha” moment in which you recognise a disorder being described as matching your dad’s experience.

For example, you could have a look through this list of conditions:

https://heartrhythmalliance.org/aa/uk/conditions

(Not that I’m suggesting self-diagnosis, but sometimes you need to come up with ideas for what to push for, rule out, etc.)

[Steveno]

Hey guys! thank you so much! My father was hosptilized this week because of pain in his lungs (Covid related) and doctors were worried about his depression.  He feels hopeless since everytime we go to a doctor they all seem to just pass it on to someone else or say that his test came out fine. Its crazy how at this point we are waiting for a diagnose and not for a doctor to tell us his fine. From my understanding, all heart test have come out fine, and when he faints his blood pressure does not fluctuate nor his vitals. Also he can get it laying down, sleeping, standing, walking. This does not happen on rapid movements, it may trigger it sometimes but many times he can literally be sitting in his computer and he passes out. His gotten hurt multiple times which worries us, because showering can also be a difficult task for him to do alone. I would love to find a doctor that can just help him and no have us going to a million doctors. 

Brief Info about my dad 

50 Years old 

We live in Long Island New York

Had covid and was in ICU, we almost lost him at one point during the outbreak

Tilt Table Test came out fine, ECG came out good

 

[MikeO]

Sorry to hear your Father continues to struggle with the syncope. When i was trying to get to the bottom of to the reason why i would pass out was my Team did a carotid artery massage as some folks are sensitive to pressure put on it. We also put in a ILR for long term heart monitoring looking for arrhythmias and heart block.

I hope you do find some answers.   

[Steveno]

My question to all is, can the syncope go away? i mean just yesterday he had 35 Faints

[Pistol]

7 hours ago, Steveno said:

My question to all is, can the syncope go away? i mean just yesterday he had 35 Faints

That completely depends on WHY he faints, and it sounds like they have not yet found the reason. 

[Birdlady]

Have they ruled out seizures? My goodness I hope the doctors figure this out soon. Fainting that many times in a day is completely life altering. I'm so sorry.