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pamclark
@pamclark

Posts: 5
Joined: Jan 20, 2019

ABI, Cough Syncope and Seizures

Posted by @pamclark, Fri, Jan 25 11:37am

Michael had multi focal brain hemmorages in 2009. Over the past two years, his cough syncope has gotten a lot worse. One little cough and here is what happens :
He starts to cough, a short sound.
Goes beet red in a split second. I mean bright red, like a newborn.
Face wrinkles up as he looks like a drowning baby.
Shoulders hunch up tight.
May yell or kind of spray spittle.
Eyes roll up and to the right.
Tongue sticks out a bit.
Jaws clamp down.
Michael stops breathing and passes out.
(One time recently, for the first time, I saw his eyes track partly back leftward.)
The unconscious period used to last a second (in 2012 approximately) but now lasts for much longer, up to ten or more seconds.
Comes to utterly disoriented. Takes a while to come fully to consciousness. Feels tired.
Michael Has Fallen and had numerous bruises.
Now he lives on the couch, afraid to go out.
No one has been able to help us. I have only part of several events on video, because the first part happens quickly and I am trying to help Michael, who is passing out in extreme distress.
Please help.

REPLY

Welcome to Mayo Clinic Connect, @pamclark. Sounds like a very distressing situation with Michael.

I'd like to introduce you to @jakedduck1 @johnbishop @dawn_giacabazi @jenniferhunter, who may have some thoughts on his experiences.

Has he seen a neurologist in your search for help for him? More immediately, though, if he is passing out, have you considered taking him to the ER?

@pamclark
Hi Pam
Definitely a scary and stressful situation. Based on my experience I have a few questions. Has Michael been diagnosed with Chronic Obstructive Pulmonary Disease (COPD)? Can he predict or does he have any warning before coughing attacks? Has he had an EEG? Has he had a sleep study? Has he been evaluated in a seizure monitoring clinic?

Not sure if he has tried this technique but Exhaling before he coughs may help him but that is a technique usually my COPD patients use to prevent the syncope episode.

Curious
Dawn

Hi Pam @pamclark, I have no experience with cough syncope but do agree with suggestions from @lisalucier and @dawn_giacabazi. I'm not sure if it's an option for you but Mayo Clinic is very good at diagnosing difficult and rare conditions. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

https://www.mayoclinic.org/appointments

I did find some references which may be helpful understanding the condition.

NIH – Diagnosis and treatment of syncope
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861366/

RepiratoryMedicine – Cough Syncopy
https://www.resmedjournal.com/article/S0954-6111(13)00435-6/fulltext

I think recording the episodes and keeping a log until you get help is a good idea. I think this will help the doctors/specialists diagnose the cause and come up with a treatment. Hoping you find some answers soon.

John

@pamclark A few things stood out to me in your description on the cough syncope episode. In a cough, you are changing pressure in airways and blood circulation and the face turning read might indicate this too. Then the question is how does this increase in blood pressure affect the brain. With prior brain hemorrhages, these sites might be leaking blood through the vessels into the brain during the episode from an increase in blood pressure and actually causing a seizure. The hunching of the shoulders may be trying to expand the chest in panic breathing by using the neck muscles to pull the rib cage upward. I have asthma and I know that I unconsciously do that if I struggle to breathe. Syncope is a protective response to protect the brain if blood pressure gets to high. I had these episodes many times in my life from anxiety that raises my blood pressure, and only now in my adult life have I gotten control over this. Loss of oxygen to the brain causes a seizure like event that may not be an actual seizure. I passed out during painful nerve conduction tests with a neurologist and kicked my leg in what then called a myoclonic jerk. After that, I was sent for an MRI of the brain, and a sleep study.

The other questions you should ask would be if there is anything abnormal in the alignment of the head and neck that could impair circulation to the brain. There are some spine problems that can affect the circulation in vertebral artery and jugular veins. If there had been a prior injury to the neck, it may have left a physical problem that compromises the circulation a little bit all the time, but if provoked by a sudden change in blood pressure, it may have increased effects that could generate the syncope. A good physical therapist who rehabs spine surgery patients may be able to evaluate this, but only after they review current imaging on the spine and skull.

You also mentioned falling. Is this in relation to a syncope episode, or does this just happen? I'm not sure how old Michael is or if he has other physical traits that could lead to falls. I agree, you should come to Mayo and he should be evaluated. Have you had him evaluated for the reasons for his cough? I don't know if that is a reoccurring cough or just a random cough. There could be allergies or asthma involved.

Here are some links that may be of interest. They at least explain problems with similar symptoms and give you a basis to ask questions. I have thoracic outlet syndrome, and I am a spine surgery patient, and of course I have years of experience with syncope.

Sharing Mayo Clinic recently told my story, https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

(This one describes changes in circulation issues)
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://sharing.mayoclinic.org/2019/01/21/looking-to-crack-the-code-on-cavernous-malformations/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Here is an abstract about Bow Hunter's Syndrome I found by searching on MayoClinic.org which explains how the blood supply is altered when the a patient turns their head and it has to do with artery compression due to spinal misalignment of the blood supply to the brain. If your vertebrae get stuck in a turned position, it can cause problems. It talks about vertigo, vision problems and tinnitus (ringing ears). That 's the link, and I pasted the text of the abstract below.

https://www.ncbi.nlm.nih.gov/pubmed/28062802?dopt=Abstract

@lisalucier

Welcome to Mayo Clinic Connect, @pamclark. Sounds like a very distressing situation with Michael.

I'd like to introduce you to @jakedduck1 @johnbishop @dawn_giacabazi @jenniferhunter, who may have some thoughts on his experiences.

Has he seen a neurologist in your search for help for him? More immediately, though, if he is passing out, have you considered taking him to the ER?

Jump to this post

Hello, Everyone.
We moved to a new province after his neurologist erroneously cleared him. The deficits were unknown at first. He was only diagnosed with brain damage when he finally admitted that he could not read anymore, six whole years after the incident. I have been trying to find a new neurologist here for him, but am having trouble negotiating the health care system.
I have taken him to the ER, after his last thunderclap migraine in 2017. They sent him home without doing the necessary tests. I have zero faith in that hospital.
I have been attempting to get the fits and syncope on video, and no one is listening until I do.
He has been seen by a respirologist and now a gastroenterologist. They are trying to see if silent reflux is affecting him, even though he doesn't have apparent heartburn. The cardiologist is next up at bat. I am going to go to the brain injury section of the hospital and raise hell because I can't get a neurologist to get a second opinion. The neurologist he has seen here, I swear to God, is badly in need of retirement. I have had a full neurology exam myself and the octogenarian seems utterly lost when Michael passes that "touch your nose" test and doesn't suggest any help no matter how seriously we describe the syncopal episodes.

@dawn_giacabazi

@pamclark
Hi Pam
Definitely a scary and stressful situation. Based on my experience I have a few questions. Has Michael been diagnosed with Chronic Obstructive Pulmonary Disease (COPD)? Can he predict or does he have any warning before coughing attacks? Has he had an EEG? Has he had a sleep study? Has he been evaluated in a seizure monitoring clinic?

Not sure if he has tried this technique but Exhaling before he coughs may help him but that is a technique usually my COPD patients use to prevent the syncope episode.

Curious
Dawn

Jump to this post

Hi Dawn. I never heard of a seizure monitoring clinic, and had no luck getting a seizure specialist yet.
Michael has been told that he has some sleep apnea, but he has not used a CPAP. No COPD.
The episodes are extremely sudden and often happen if he takes a sip of water and starts to cough, or takes too deep a breath. But the respirologist said that it's not respiratory. Color me baffled.
Michael does sometimes snore, and he wakes 2-3 times a night.

@johnbishop

Hi Pam @pamclark, I have no experience with cough syncope but do agree with suggestions from @lisalucier and @dawn_giacabazi. I'm not sure if it's an option for you but Mayo Clinic is very good at diagnosing difficult and rare conditions. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

https://www.mayoclinic.org/appointments

I did find some references which may be helpful understanding the condition.

NIH – Diagnosis and treatment of syncope
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861366/

RepiratoryMedicine – Cough Syncopy
https://www.resmedjournal.com/article/S0954-6111(13)00435-6/fulltext

I think recording the episodes and keeping a log until you get help is a good idea. I think this will help the doctors/specialists diagnose the cause and come up with a treatment. Hoping you find some answers soon.

John

Jump to this post

Thank you for the resources. I am trying to capture the full episodes on video. They are so sudden, I am almost never in the room.

@jenniferhunter

@pamclark A few things stood out to me in your description on the cough syncope episode. In a cough, you are changing pressure in airways and blood circulation and the face turning read might indicate this too. Then the question is how does this increase in blood pressure affect the brain. With prior brain hemorrhages, these sites might be leaking blood through the vessels into the brain during the episode from an increase in blood pressure and actually causing a seizure. The hunching of the shoulders may be trying to expand the chest in panic breathing by using the neck muscles to pull the rib cage upward. I have asthma and I know that I unconsciously do that if I struggle to breathe. Syncope is a protective response to protect the brain if blood pressure gets to high. I had these episodes many times in my life from anxiety that raises my blood pressure, and only now in my adult life have I gotten control over this. Loss of oxygen to the brain causes a seizure like event that may not be an actual seizure. I passed out during painful nerve conduction tests with a neurologist and kicked my leg in what then called a myoclonic jerk. After that, I was sent for an MRI of the brain, and a sleep study.

The other questions you should ask would be if there is anything abnormal in the alignment of the head and neck that could impair circulation to the brain. There are some spine problems that can affect the circulation in vertebral artery and jugular veins. If there had been a prior injury to the neck, it may have left a physical problem that compromises the circulation a little bit all the time, but if provoked by a sudden change in blood pressure, it may have increased effects that could generate the syncope. A good physical therapist who rehabs spine surgery patients may be able to evaluate this, but only after they review current imaging on the spine and skull.

You also mentioned falling. Is this in relation to a syncope episode, or does this just happen? I'm not sure how old Michael is or if he has other physical traits that could lead to falls. I agree, you should come to Mayo and he should be evaluated. Have you had him evaluated for the reasons for his cough? I don't know if that is a reoccurring cough or just a random cough. There could be allergies or asthma involved.

Here are some links that may be of interest. They at least explain problems with similar symptoms and give you a basis to ask questions. I have thoracic outlet syndrome, and I am a spine surgery patient, and of course I have years of experience with syncope.

Sharing Mayo Clinic recently told my story, https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

(This one describes changes in circulation issues)
https://trainingandrehabilitation.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://sharing.mayoclinic.org/2019/01/21/looking-to-crack-the-code-on-cavernous-malformations/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Here is an abstract about Bow Hunter's Syndrome I found by searching on MayoClinic.org which explains how the blood supply is altered when the a patient turns their head and it has to do with artery compression due to spinal misalignment of the blood supply to the brain. If your vertebrae get stuck in a turned position, it can cause problems. It talks about vertigo, vision problems and tinnitus (ringing ears). That 's the link, and I pasted the text of the abstract below.

https://www.ncbi.nlm.nih.gov/pubmed/28062802?dopt=Abstract

Jump to this post

Omg. My heart just sank into my feet. I will show your message to the family doctor.
There was no neck or spinal injury.
However, Michael has acute neurogenic hypertension, and the turning red was not present for the first few years. The episodes are becoming more terrifying by far.

@pamclark

Omg. My heart just sank into my feet. I will show your message to the family doctor.
There was no neck or spinal injury.
However, Michael has acute neurogenic hypertension, and the turning red was not present for the first few years. The episodes are becoming more terrifying by far.

Jump to this post

@pamclark Hi Pam. I wanted you to know I'm thinking about you and I certainly don't want to cause stress. I am not a doctor, but I have a biology science background and I learned a lot by my own personal health experience, and by advocating medical conditions for my elderly parents, and I've read a lot of medical literature. I read everything I could about spine related issues when I was going through that a couple years ago for myself. I'm guessing you might live in Canada? I hope my comments have given you a path to advocate with the doctors. If you are unable to find the right specialists, you may want to call Mayo. Paying out of pocket is an option to be seen at Mayo. Mayo does prioritize according to the urgency of the case, and sometimes they accept charity cases. Mayo might be able to consult with your local doctors and assist in your care where you are. You have to ask and see what they say. It's a phone call that could change his life. I know that Mayo will review imaging for prospective patients without charge, and let you know if they think they can help. If you are accepted as a patient, you would have cost when you begin having appointments. There are also costs for travel and hotels, but there are also some churches who help with low cost housing in Rochester.

I came to Mayo after 5 surgeons misunderstood my spine problem. I sought help for 2 years, and I was just getting worse, and loosing the ability to hold my arms up. None of them would help me. I found medical literature with cases like mine, and I knew what the doctors missed, and even doctors I had seen would not help me confront a doctor who had missed the problem and was dismissive. That wasted 6 months and then he opted not to operate, and the only solution for my spinal cord compression was surgery. They were not listening to me because they didn't hear something they recognized, and they didn't ask the questions to think about it differently. That is what I hope to do by the questions I bring up, to ask the "how" and the "why" of explaining a medical condition to understand how the body works. Even though I was afraid of having surgery, I was also afraid of not having surgery and what my life would become.

Mayo is totally different and efficient in how they interact as a team with all the specialists, and they accomplished in 3 days what 5 surgeons could not in a few years. The missed communications, waiting for tests, and waiting over and over, tests sent to the wrong offices…and then they don't know what to make of the tests….. that didn't happen at Mayo. They are efficient and don't waste time. I wish I had come there first because the expert knowledge of the Mayo doctors was so much more than the local doctors who were scratching their heads and not willing to spend enough time to figure out the problem. I do hope you find the help Michael needs.

I saw your mention about the thunderclap migraine and here is a Mayo link about that, and it seems to fit with the other symptoms and is related to seizures. You had mentioned something an incident at the beginning of the problems. Are you able to share how this started?

https://www.mayoclinic.org/diseases-conditions/thunderclap-headaches/symptoms-causes/syc-20378361

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