Can Pots Cause Brain Damage?

[SnowDrifter]

Been feeling pretty crappy the past couple days and I keep having this worry in the back of my mind that the POTS caused some sort of permanent brain damage.

I'm sure that's not the case, but I need some confirmation

[ramakentesh]

_{Ive had pots for a decade on and off - some good times, some total remissions - but back and forth. I dont think im exhibiting any symptoms of brain damage yet My only concern is that prolonged cerebral hypoperfusion could predispose to stroke and or perhaps vascular dementia later in life.}

[imre]

No, pretty sure it doesn't.

[sue1234]

I have a double whammy going for me. POTS, with hypoperfusion, and hypoglycemia, starving the brain cells. I can tell I cannot think "in depth" like I used to be able to. I am also having issues with short-term memory. I just keep thinking if my brain can just hold out until I get all this fixed!

[Guest mattgreen]

My memory is a huge concern and it is deteriorating. I will forget things immediately, many times mid-thought/mid-sentence. I find confusion and mental hyperactivity increasing also.

[sue1234]

Matt, I'm glad you brought up hyperactivity. I have been having issues with brain hyperactivity, too. My mind is non-stop now, and it's like the creativity part of it is now OCD.

[alijames]

HI

According to my neuro-opthamologist, years of hypoperfusion have damaged the vision center

of my brain, causing it not to receive info smoothly. I have developed a damaged sense of midline

and ocular-vestibular dysreflexia. Have to use prims glasses and can only see for short periods.

Memory is spotty. Emotional memory works, cues help.

Come on! How many times can you black out! Even 3 blows to the head causes some damage. When

the drs say it doesn't, it means they haven't found the site of damage or the mechanism of it.

If you ask a rehab specialist, they may see your problems entirely differently.

alice

[jangle]

I've had pots lightheadedness for 7 years and om in medical school. Some doctors will argue that pots patients actually don't have hypoperfusion. There have been a few studies showing pots patients with lightheadedness actually maintain perfusion. Where the symptoms of lightheadedness come from then is uncertain. One can speculate that damage is occurring, but the evidence just isn't there. There are people who've had pots for decades and they don't show signs of neurodegenerative disorder. Now of course when one considers complications or confounding factors such as hitting ones head from passing out, having severe untreated sleep apnea, or depression from chronic pain - all these things can influence cognitive function.

[Racer]

I've had pots lightheadedness for 7 years and om in medical school. Some doctors will argue that pots patients actually don't have hypoperfusion. There have been a few studies showing pots patients with lightheadedness actually maintain perfusion. Where the symptoms of lightheadedness come from then is uncertain. One can speculate that damage is occurring, but the evidence just isn't there. There are people who've had pots for decades and they don't show signs of neurodegenerative disorder. Now of course when one considers complications or confounding factors such as hitting ones head from passing out, having severe untreated sleep apnea, or depression from chronic pain - all these things can influence cognitive function.

I assume your talking about people who have pots with no blood pressure fluctuations? Since many people experience fluctuations in blood pressure along with tachycardia, the lines are obviously blurred. In these cases, one is not speculating if there is hypoperfusion? So these people dont have pots? By what standards?

Nothing personal, I just think it is dangerous to make a assertion based on a strict interpretation on something that is not so clear cut?

[Guest mattgreen]

Cognitive impairment in AAG:

Pathophysiological mechanisms that may underlie cognitive impairment in AAG include transient, intermittent, reduced cerebral perfusion due to orthostatic hypotension or chronic cerebral effects of repeated episodes of severe orthostatic hypotension. Central effects of the nicotinic acetylcholine receptor (AChR) antibody also may be responsible.

Full text (HTML)

[jangle]

I've had pots lightheadedness for 7 years and om in medical school. Some doctors will argue that pots patients actually don't have hypoperfusion. There have been a few studies showing pots patients with lightheadedness actually maintain perfusion. Where the symptoms of lightheadedness come from then is uncertain. One can speculate that damage is occurring, but the evidence just isn't there. There are people who've had pots for decades and they don't show signs of neurodegenerative disorder. Now of course when one considers complications or confounding factors such as hitting ones head from passing out, having severe untreated sleep apnea, or depression from chronic pain - all these things can influence cognitive function.

I assume your talking about people who have pots with no blood pressure fluctuations? Since many people experience fluctuations in blood pressure along with tachycardia, the lines are obviously blurred. In these cases, one is not speculating if there is hypoperfusion? So these people dont have pots? By what standards?

Nothing personal, I just think it is dangerous to make a assertion based on a strict interpretation on something that is not so clear cut?

Typically the brain can maintain perfusion up to around 85 mmHg or less systolic pressure. Whether there is a shift towards higher blood pressure values before fall in cerebral profusion in POTS patients is uncertain.

The study I'm referring to is this one:

http://jap.physiology.org/content/99/3/828.full

Additionally I had correspondence with a Mayo autonomic researcher who also confirmed that perfusion is typically maintained in POTS. I'm sure that researcher is basing their opinion on more than just that one study (probably having seen and SPECT tested many POTS patients over the years) as they have actually published articles on POTS.

Yes, one typically talks of POTS in the absence of appreciable orthostatic hypotension. There can be no argument that with OH, cerebral perfusion can be compromised past a certain threshold.

[NaomiSpellman]

SnowDrifter I have also been thinking about this issue. What I learned recently: 1. Migraine sufferers have reduced brain cortex layer (thinner from birth and worsening with each migraine) and migraines with aura can be spotted in MRI as faint curved white streaks in your brain 2. Bipolars have reduced grey matter overall

3. Chronic viral infections cause memory loss/brain fog

4. Anti-depressants cause memory loss, as do many pharmaceuticals prescribed to neurologic patients

5. And as we know Dysautonomics have reduced oxygen in brain

I have the full quintuple whammy. It is a wonder I don't hear my brain rattling around loose in my cranium at this point. Certainly these reductions in functioning brain matter would have to cause reduced brain function. Sometimes I wonder if it wouldn't be better to just be permanently STOOPID all the time. It is hard to be intermittently STOOPID each day. Makes no sense to people. I have had a 5 week phase of brain fog now - the longest I have ever had. Used to be helped through acupuncture. No more.

Good luck.

[Angela]

yes. i think there is something to this. my sis has ms and her symptoms are not so severe as mine with pots. stress triggers her illness, and everyone knows that ms can kill you - in some studies linked with ccsvi. every major stresser she experiences makes her brain cog worse. sounds like pots without the vital issues, yeah? but, i know I am not up to speed now and I think the lack of oxygen is a permanent issue.

[jangle]

There's no argument that POTS diminishes cognitive ability. The question of brain damage is a much more complex issue and might necessarily be open ended. What we do know is that researchers who've followed POTS patients for decades have not noted a transition to MCI or Dementia that an illness that caused brain damage would tend to illicit. Additionally patients with POTS aren't shown to develop typical neurological signs of physical brain damage, and there's not been any real mention of brain MRI abnormalities - no shrinking or notable atrophy of the brain. Even in neurodegenerative illnesses that evade MRI, such as chronic traumatic encephalopathy - associated with tau deposition and neuronal death, one will typically see symptoms suggestive of neurodegeneration, which again has not really been noted in POTS patients.

One would tend to want to look at patients who recover from their POTS and see if they're cognitively normal to controls, and follow them up in the long term.

The message I've gotten from researchers about POTS and IST patients is that the prognosis is benign in the sense of bringing out further complications, but that they are functionally debilitated.

[Chaos]

Jangle- Must be a sign of my impaired cognitive abilities but I'm not following your logic. Why would you want to follow patients who recover from their POTS to compare them to controls to see if they are cognitively normal and follow them up long term? They aren't the ones I'm worried about. It's those of us who have these long term cases that AREN'T recovering despite meds, despite exercise, despite ..... We're the ones who maybe have more BP issues involved, who maybe don't "just" have POTS (if you define POTS as ONLY the 30 BPM increase in HR without BP drop and ignore all the other symptoms that so many of us have of fatigue, weakness, paraesthesia, cognitive decline, migraines, EDS, GI issues, etc etc etc)

Perhaps this is more an issue (yet again) of nomenclature and determining what the sub groups are. Maybe if you just have the HR thing, then you have a benign process? But how many really only have that without the other symptoms. Seems like Levine is able to find them for his studies so it must be a certain percentage. But that has never seemed like an accurate reflection of a lot of us in the POTS population.

Easy for researchers to say "it's benign" and it "doesn't cause brain damage". They're not living with the day to day, real life, very obvious and frequently embarrassing results of it occurring! Thanks, but by the time they get their research figured out, I'm going to be a demented old woman.

[vemee]

I think the question can be extended to; can pots cause damage to other body systems. Or I guess the proper question is there a particular physical disease or condition that has the same symptoms as pots but is different from pots in that it can affect multiple systems? I blame my hypoglycemia on dysautonomia. Of course I have no evidence to base this on except that I have both conditions. I believe one of the board members asked one of the Dr. at Vanderbilt if they were doing research into a relationship between pots and hypoglycemia. If I remember right they just looked at him/her funny; so the answer is there is no research in that field.

I have had pots since my late teens (I am almost 60 now) and even though it was a hinderance and often caused embarasment due to brain fog, it was not a disability until I was in my late 40s and I developed autonomic neuropathy. After that started I could no longer work. So the disease either progressed or something else got added into the mix that made me worse. At the same time I also developed low thyroid.

Now in regards to the original post: even though my memory is not as good as it was, I do not think I have developed any brain damage because there are a few times when my brain functions normaly.

[jangle]

Chaos the reason for studying recovered pots patients is because it would be necessary to assess the question of damage to the brain. If you study pots patients while they're sick and find they have cognitive impairment one has to ask how much of that is due to just being sick or how much of that is due to damage. Studying recuperated individuals allows one to isolate the question on actual damage.

Yes the question of subgroups and oh is of particular interest.

[Chaos]

Jangle, yes I can see that the study you are suggesting would tell you amongst the subgroup of patients who recovered from POTS, if and how much brain damage might have occurred. In my opinion you would not be able to extrapolate much information from that to the greater POTS population however. I know people "do" recover from POTS, so it would be worth knowing for them. However, it also seems that once they are recovered they wouldn't be having symptoms, which would include no cognitive symptoms either. So would you really be getting much info? Might be interesting to see. They might just look like your controls....which would be really nice for them! ( As an aside, how do they determine a patient is recovered? Don't fit POTS criteria on a certain test date? Don't have symptoms for a year? 5 years? 10 years?)

Not studying patients while they are sick seems like avoiding the very issue that needs to be addressed. Especially amongst those patients who are NOT recovering and have ongoing and seemingly progressive complaints of cognitive dysfunction. But again..it comes down to finding subgroups. First we need to figure out WHO recovers and WHY? What in that sub group is working right? If they can figure that out and how to correct it, maybe we don't need studies worrying about long term brain damage. . One can always dream, right?

[Darlene]

i have 6 lesions in my brain, so i assume it can...

[Angela]

yeah my mri in 2011 showed nothing my mri in 2012 showed devious anomolie (sp) it's kinda like ccsvi in your head with the veins and all. they call it looking like medusa head ha ha.

[yogini]

For those of you that had something on an MRI or brain scan, are you sure the lesions caused POTS? Or did POTS cause the lesions?

When my symptoms are acting up, my memory, etc can go sometimes. These types of issues go away when my POTS flare goes away, so I don't consider them brain damage. I cannot speak for everyone, but think it's unlikely that the average POTS patient gets long-term or permanent brain damage from POTS.

[jangle]

For those of you that had something on an MRI or brain scan, are you sure the lesions caused POTS? Or did POTS cause the lesions?

When my symptoms are acting up, my memory, etc can go sometimes. These types of issues go away when my POTS flare goes away, so I don't consider them brain damage. I cannot speak for everyone, but think it's unlikely that the average POTS patient gets long-term or permanent brain damage from POTS.

I had a brain MRI in 2005 when this all started w and w/o contrast, that showed no lesions. I had a repeat MRI 6 years later w and w/o contrast that also showed no lesions. So take that for what it's worth.

[yogini]

I would be much more inclined to believe the lesions caused the POTS or that some other co-condition caused both the lesions or the POTS.

[joyagh]

a POTS DX is certainly not benign, depending on cause. If cardiac autonomic neuropathy is the cause, you can die from a sudden cardiac event.

I'm sure other causes are not benign either.