Autonomic Nervous System Dysfunction

[kellygrn]

AD Wallet card

There is a pocket card since a lot of ER's don't know what it is. Here is the location. It is common in folks with spinal cord injury's.

http://www.christopherreeve.org/site...6IlL2KpO9JwKfF

KK

[marti]

I've suspected I could have Dysautonomia but never pursued the issue. Can you have it without actually passing out?? I have h/r fluctuations, dizzies and a feeling of nearly passing out. My toes will tingle when all this happens. Now my legs feel really weak.

I have to keep reminding myself that I have other things, like Graves Disease and a back full of bulging discs. Now I have osteoporosis to add to the mix.

So, what exactly is the criteria for testing?

[mjan]

Just curious if any of you have these "episodes" as I call them, like an exacerbation of MS? IN other words, they come and go away for awhile. I have them less frequently now that I am on a beta blocker..but..when my MS acts up, it seems to as well.

Curious to know IF it is indeed related to MS..

Let me know what you think.

Jan

[mjan]

I've suspected I could have Dysautonomia but never pursued the issue. Can you have it without actually passing out?? I have h/r fluctuations, dizzies and a feeling of nearly passing out. My toes will tingle when all this happens. Now my legs feel really weak.

I have to keep reminding myself that I have other things, like Graves Disease and a back full of bulging discs. Now I have osteoporosis to add to the mix.

So, what exactly is the criteria for testing?

One of the ways to test if the Tilt Table Test. The "poor mans" TTT is to take your BP sitting, then again standing. For most with dysautonomia, or POTS, (postural orthostatic tachycardia) your BP will suddenly drop (or rise) a good 30 pts. If I got this right. You can feel like you may faint or actually do. I never faint, but feel like I am losing consciousness. I can always tell, as my BP rises suddenly BUT its feeling my HR increase 30 pts approx that gets my attention. I cannot remain seated. I have to lay down.

Again, I had an astute primary doc who knew to send me to a neuro who was a specialists for Autonomic disorders. Many cardiologists will refer you for a POTS or TTT exam, but autonomic tesing is done in a specialized lab where TTT is only part of a day long exam. I also do not sweat very much so I react to heat with such symptoms.

Jan

[Tawanda]

By far, these are the creepiest M.S. symptoms out there and are rarely discussed on this board. Mobility/Shmobility. A cane or a wheelchair/scooter might suck, but they won't kill you. These brain lesions are the kind that people with M.S. die from. It seems like none of us really want to think or talk about them, but thankfully, this kind of M.S. outcome is fairly rare.

[rdmc]

By far, these are the creepiest M.S. symptoms out there and are rarely discussed on this board. Mobility/Shmobility. A cane or a wheelchair/scooter might suck, but they won't kill you. These brain lesions are the kind that people with M.S. die from. It seems like none of us really want to think or talk about them, but thankfully, this kind of M.S. outcome is fairly rare.

Hey Tawanda,

Yep you're right, they could kill us, but it is a rare occurrence. I have a rather large one in my medulla, it takes up a good bit of "real estate" in a relatively small area and evidently is the cause of some of my weird symptoms.

But truth is, I could get killed in an auto accident, or a tornado (well hurricane in my neck of the woods.) We really have no control as to the time of our death.

The hardest part, for me, is to just learn to relax in the situation when stuff starts going bonkers with the bp or heart rate. My body is screaming "Time to panic" ("Danger, danger, Will Robinson"...guess I'm dating myself with that one), but the brain has to say, "No, don't panic, follow the protocol, take the pills, see what happens. You've had this before and it resolved, let's see where it's going."

Truth is, with most of MSers, brainstem lesions. or not, there are many times our body is screaming at us that we need to seek medical advice immediately or be in the ER, but we "muddle" through and manage to learn to deal with the symptom "du jour." In fact, 2 posters on this forum, Mark Lavelle, and Sequoia, had strokes, and thought they were just MS symptoms.

But as far as SUDMUS...sudden death from MS (that seems to be the new word for it when it's being studied...truth is, sudden death as opposed to slow downhill slide just doesn't seem so bad. As I've said before, I cope by asking to know the worst thing that might happen, and then work my way back from there.

So it seems that the worst that can happen is dying from the autonomic function issue, but after watching people with advanced MS (those Annette Funicello videos being a good example)...I don't know it sudden death from MS is the worst thing.

And truth is, it doesn't do any good to even think about it because we can't change it anyway. A loose paraphrase of a verse in Mathhew 6...Don't worry about tomorrow because you've got plenty to deal with today.

So in a blast from the past...my Eccl. 3 reminder: https://www.youtube.com/watch?v=HcQpyrihdSw

[kellygrn]

Not sure you understand what autonomic dysreflexia is. This is from Wikepedia. It is deadly shortly after it starts unless someone knows what it is & how to treat it

Autonomic dysreflexia (AD), also known as autonomic hyperreflexia, is a potentially life threatening condition which can be considered a medical emergency requiring immediate attention. AD occurs most often in spinal cord-injured individuals with spinal lesions above the T6 spinal cord level; although, it has been known to occur in patients with a lesion as low as T10.

Acute AD is a reaction of the autonomic (involuntary) nervous system to overstimulation. It is characterised by severe paroxysmal hypertension (episodic high blood pressure) associated with throbbing headaches, profuse sweating, nasal stuffiness, flushing of the skin above the level of the lesion, bradycardia, apprehension and anxiety, which is sometimes accompanied by cognitive impairment. The sympathetic discharge that occurs is usually in association with spinal cord injury (SCI) or disease (e.g. multiple sclerosis).

AD is believed to be triggered by afferent stimuli (nerve signals that send messages back to the spinal cord and brain) which originate below the level of the spinal cord lesion. It is believed that these afferent stimuli trigger and maintain an increase in blood pressure via a sympathetically mediated vasoconstriction in muscle, skin and splanchnic (gut) vascular beds.

KK

[22cyclist]

Thanks KK. Most of us that have it know all to well what it is. Our doctors have diagnosed us. It is more than what is on Wiki. There are different types as you see here in the people that have it. We are each treated by cardiologists.

BTW the brainstem is a part of the spinal cord and is a very sensitive part of autonomic damage. It is the center for cardiac and respiratory function. Most of our lesions are in the brainstem a much scarier place to have a lesion than the lower cord.

Take care
Lisa
Moderation Team

[mjan]

Not sure you understand what autonomic dysreflexia is. This is from Wikepedia. It is deadly shortly after it starts unless someone knows what it is & how to treat it

Autonomic dysreflexia (AD), also known as autonomic hyperreflexia, is a potentially life threatening condition which can be considered a medical emergency requiring immediate attention. AD occurs most often in spinal cord-injured individuals with spinal lesions above the T6 spinal cord level; although, it has been known to occur in patients with a lesion as low as T10.

Acute AD is a reaction of the autonomic (involuntary) nervous system to overstimulation. It is characterised by severe paroxysmal hypertension (episodic high blood pressure) associated with throbbing headaches, profuse sweating, nasal stuffiness, flushing of the skin above the level of the lesion, bradycardia, apprehension and anxiety, which is sometimes accompanied by cognitive impairment. The sympathetic discharge that occurs is usually in association with spinal cord injury (SCI) or disease (e.g. multiple sclerosis).

AD is believed to be triggered by afferent stimuli (nerve signals that send messages back to the spinal cord and brain) which originate below the level of the spinal cord lesion. It is believed that these afferent stimuli trigger and maintain an increase in blood pressure via a sympathetically mediated vasoconstriction in muscle, skin and splanchnic (gut) vascular beds.

KK

I can appreciate you looking this up, but this does not pertain to Dysautonomia. Most with Dysautonomia have sudden low BP when standing usually.

My BP/ HR during a Dysautonomic attack, goes up rapidly then falls, so this AD information does not pertain. Giving me those fast acting BP meds to lower BP would further jeapordize my condition.

It is true many ER personnel do not know what this is, but one very smart MD did and knew that giving me a fast acting BP med could cause my BP to drop too low too fast.

Jan

[rdmc]

Not sure you understand what autonomic dysreflexia is. This is from Wikepedia. It is deadly shortly after it starts unless someone knows what it is & how to treat it

Autonomic dysreflexia (AD), also known as autonomic hyperreflexia, is a potentially life threatening condition which can be considered a medical emergency requiring immediate attention. AD occurs most often in spinal cord-injured individuals with spinal lesions above the T6 spinal cord level; although, it has been known to occur in patients with a lesion as low as T10.

Acute AD is a reaction of the autonomic (involuntary) nervous system to overstimulation. It is characterised by severe paroxysmal hypertension (episodic high blood pressure) associated with throbbing headaches, profuse sweating, nasal stuffiness, flushing of the skin above the level of the lesion, bradycardia, apprehension and anxiety, which is sometimes accompanied by cognitive impairment. The sympathetic discharge that occurs is usually in association with spinal cord injury (SCI) or disease (e.g. multiple sclerosis).

AD is believed to be triggered by afferent stimuli (nerve signals that send messages back to the spinal cord and brain) which originate below the level of the spinal cord lesion. It is believed that these afferent stimuli trigger and maintain an increase in blood pressure via a sympathetically mediated vasoconstriction in muscle, skin and splanchnic (gut) vascular beds.

KK

Hey Kelly,

Years ago dysreflexia used to be thought to be confined to SCI patients...but it does happen in MS patients, so that info is always good to put out there for MS patients to see in case they start to exhibit those symptoms. Since it is caused by a lesion about T6, that does cover a wide swath of MS patients.

My episodes were at first thought to be caused by a pheochromocytoma. I had high catecholamines so they thought pheo. The unusually high BP spikes, flushing, headache, stuffiness are symptoms of a pheo (which is a benign tumor on the adrenal glands.) So went to the nephrologist BP specialist, and had all the tests, MRI, etc. and no pheo was found.

So if it wasn't a pheo, the conclusion was it must be dysreflexia...almost same symptoms as pheo. I started on clonidine, with instructions how to use it when the symptoms start...pop the clonidine, look for the trigger, and try to correct it, if it doesn't resolved pop more clonidine, and if still no effect, head for ER...but I never could identify a trigger and usually, but not always, it causes a slowed heart rate, but mine was always racing. Then when the SVT was caught on a EKG during an "episode"...and I did all the cardiologist tests...the cardiac electrophysiologist was the one who said he believed it was all just autonomic dysfunction problems.

But I do treat the BP spikes identically how you would treat dysreflexia....clonidine is my friend.

My new neurologists says he hates to see everything blamed on MS...but in my case, I don't have any other credible evidence that the problems are caused by anything other than MS.

[Tawanda]

[QUOTE=rdmc;1418336]Hey Tawanda,

Yep you're right, they could kill us, but it is a rare occurrence. I have a rather large one in my medulla, it takes up a good bit of "real estate" in a relatively small area and evidently is the cause of some of my weird symptoms.

But truth is, I could get killed in an auto accident, or a tornado (well hurricane in my neck of the woods.) We really have no control as to the time of our death.

The hardest part, for me, is to just learn to relax in the situation when stuff starts going bonkers with the bp or heart rate. My body is screaming "Time to panic" ("Danger, danger, Will Robinson"...guess I'm dating myself with that one), but the brain has to say, "No, don't panic, follow the protocol, take the pills, see what happens. You've had this before and it resolved, let's see where it's going."

Truth is, with most of MSers, brainstem lesions. or not, there are many times our body is screaming at us that we need to seek medical advice immediately or be in the ER, but we "muddle" through and manage to learn to deal with the symptom "du jour." In fact, 2 posters on this forum, Mark Lavelle, and Sequoia, had strokes, and thought they were just MS symptoms.

But as far as SUDMUS...sudden death from MS (that seems to be the new word for it when it's being studied...truth is, sudden death as opposed to slow downhill slide just doesn't seem so bad. As I've said before, I cope by asking to know the worst thing that might happen, and then work my way back from there.

So it seems that the worst that can happen is dying from the autonomic function issue, but after watching people with advanced MS (those Annette Funicello videos being a good example)...I don't know it sudden death from MS is the worst thing.

And truth is, it doesn't do any good to even think about it because we can't change it anyway. A loose paraphrase of a verse in Mathhew 6...Don't worry about tomorrow because you've got plenty to deal with today.

So in a blast from the past...my Eccl. 3 reminder:

As usual, I totally agree with you! Annette F. was a big eye opener for many of us. I do try to take it one day at a time, and if that isn't doable, one hour at a time!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Jules A]

But as far as SUDMUS...sudden death from MS (that seems to be the new word for it when it's being studied...truth is, sudden death as opposed to slow downhill slide just doesn't seem so bad. As I've said before, I cope by asking to know the worst thing that might happen, and then work my way back from there.

So it seems that the worst that can happen is dying from the autonomic function issue, but after watching people with advanced MS (those Annette Funicello videos being a good example)...I don't know it sudden death from MS is the worst thing.
]

I am going to pray for SUDMUS. It sure beats the alternative that I have seen far too many times.

[laurasari]

It's funny I was actually diagnosed with dysautonomia years before I was diagnosed with ms. My cardio couldn't control it. My bp would drop drastically and my heart rate would rise high. He eventually sent me as. A lab rat to vanderbuilt university. In Nashville tenn. it was great all the doctors were doing research. They diagnosed me with orthostatic hypotension and postural orthostatic tachycardia syndrome they found meds for me. Atenolol and Florine's combo. Prior to this I would b nauseous dizzy and have visual changes until I sat down. When I was diagnosed my cardio said it was from my ms that he couldn't control it and my Neuro said he never heard of that.
Good luck

[KatW]

My neuro seems very reluctant to diagnose this. My BP and HR have been up and down with meds and temperature. More like an over reaction of the autonomic nervous system. I saw a cardiologist recently and she could not find any cardiac problems. MY BP is usually high but drops very low with hot temperatures. So, I take BP meds in the winter and drop them in the summer.

I'm glad this subject is being discussed. I've found that if I approach my neurologist with new symptoms it helps if I know others have had similar symptoms. Good luck, everyone!

[mjan]

My neuro seems very reluctant to diagnose this. My BP and HR have been up and down with meds and temperature. More like an over reaction of the autonomic nervous system. I saw a cardiologist recently and she could not find any cardiac problems. MY BP is usually high but drops very low with hot temperatures. So, I take BP meds in the winter and drop them in the summer.

I'm glad this subject is being discussed. I've found that if I approach my neurologist with new symptoms it helps if I know others have had similar symptoms. Good luck, everyone!

I have found out that many doctors are not as informed about Dysautonomia, or not in the ERs I have had to go to anyway.

When I had to get IV Steriods, my general neuro at that time, was astute enough to know he had to admit me inpatient to monitor my BP/HR every 15 mins 24/7 while on steriods.

I did have a bad attack on the 2nd day of 5 day Solumedrol. The RN who answered my call button had no info on me. It wasn't her fault, as she was coming from another part of the floor, to help out. But I had respiratory distress issues that prevented me from talking. She kept saying I was only have a little panic attack!! Gave me o2 to calm me down.. and then I could explain what was going on. Geez louize. It ended with my bladder going nuts, and my legs quit working..resulting in weeks/months of walking difficulty. I could not even pivot to get on the stupid commode!! LOL

Look up Dysautonomia and see if that is any help.
There is a web site/forum: DINET.org

Good luck all!
Jan