Brain fog --> Vascular dementia

[BuffRockChick]

I stumbled across "vascular dementia" today. It's alarming.  I wonder if, and suspect that, chronic mild cerebral hypoperfusion of POTS in those who have it for decades may cause vascular dementia.  Does anyone know if long term research or retroactive surveys have been done?  I would like to know whether or not POTS is positively correlated with vascular dementia.

[WinterSown]

 There is some available information. You must be evaluated. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117678/

I have short-term memory problems. I was evaluated at Cushings/Chiari Institute in Great Neck, NY. They found that I do not have dementia from deoxygenation due to any erratic blood flow or pressure problems, I've also had my brain scanned and xrayed a lot, it's been thorough. My neurologist has me on a neurotherapy program where everyday I need do something creative with my hands or learn something new--this is to help me build new pathways to learning and memory restoration. Fortunately, everything is getting in but I am having problems with recall--I'm initially looking in the wrong file draw. As an example, since I had to retire, everyday's routine and the same. If you ask me I don't know what day of the week it is and need to look at something electronic, like my phone or computer, to read the date and time. That's okay, she said that's fine and not to worry there. It's when I no longer know where to look up the date and time that I will need a lot more help. Her neurotherapy program is working, I do have more recall and can do a lot more advanced studies but I will never be able to go back to work. I own the company, it's not fair to my clients that I am so brainfried. I fired myself :-(

[BuffRockChick]

I hear you about learning something new everyday.

I have been really bad.  I was on psych meds (for bipolar disorder misdiagnosis) and my POTS was really, really bad then.  My memory was fried.  It got so bad I couldn't dial a phone at work because I'd forget the a single digit between looking at it on the paper and pressing it on the phone. One day I was driving, I knew where I was but I didn't know where I came from or where I was going, or even my name.  I complained to my psychiatrist and he helped me off meds.  That was 5 years ago.  It took a long time to heal after that.

I have to stay learning something or I don't feel well.  We have a farm so there's always new skills to learn and opportunities for new projects. I have had the puzzle of my oldest son's homeschooling, but he's going to public school this coming school year.  I try new recipes when I can - brain fog has been keeping me out of the kitchen.  I took some classes at a community college last year.  I'd love to earn a certificate.  I just can't do more than one semester at a time - both for health and budget.  This summer I'm taking piano lessons. ?

I believe neuroplasticity is real.  I used to be unable to know what day, month, or even year it was.  I started using "pattern planning" way back when I was on psych meds.  It's been some years, but I have a sense of rhythm of days and weeks and when I need to do various tasks.  I used flylady.net to establish some of those weekly patterns.

[BuffRockChick]

I enjoyed coursera.com's class "Learning How to Learn."  They incorporate learning strategies right into the class so it's surprisingly easy to retain.  I hope it is still a free resource.  It was amazing.

[WinterSown]

17 hours ago, BuffRockChick said:

I hear you about learning something new everyday.

I have been really bad.  I was on psych meds (for bipolar disorder misdiagnosis) and my POTS was really, really bad then.  My memory was fried.  It got so bad I couldn't dial a phone at work because I'd forget the a single digit between looking at it on the paper and pressing it on the phone. One day I was driving, I knew where I was but I didn't know where I came from or where I was going, or even my name.  I complained to my psychiatrist and he helped me off meds.  That was 5 years ago.  It took a long time to heal after that.

I have to stay learning something or I don't feel well.  We have a farm so there's always new skills to learn and opportunities for new projects. I have had the puzzle of my oldest son's homeschooling, but he's going to public school this coming school year.  I try new recipes when I can - brain fog has been keeping me out of the kitchen.  I took some classes at a community college last year.  I'd love to earn a certificate.  I just can't do more than one semester at a time - both for health and budget.  This summer I'm taking piano lessons. ?

I believe neuroplasticity is real.  I used to be unable to know what day, month, or even year it was.  I started using "pattern planning" way back when I was on psych meds.  It's been some years, but I have a sense of rhythm of days and weeks and when I need to do various tasks.  I used flylady.net to establish some of those weekly patterns.

You are my twin, I am not alone! I had the number thing and I was supposed to drive to the supermarket around the corner and then I was in Syosset across the county. A friend posted a recipe for baked parmesan potatoes that I can make with the food processor and bake in the oven in a casserole, I'm gonna try that tonight--I have to do fast recipes or my legs get wonky, if I'm gonna drop it's in my kitchen. New recipes are great for my head and Hubs doesn't mind it at all. I went to the thrift store on dollar-a-bag book day and got a bunch of retro cookbooks, some for the pressure cooker (got a hotpot) and some for the food processor. I love reading them--it's like cooking my Mom's recipes. I share a lot of extension articles with the Winter Sowers, I read them first so I get some daily learning--extension articles are short but loaded with information. Last year, before I completed Vestibular PT I drew line art for adult coloring, after that I lost the urge to draw--it helped with a lot, they're funny birds and it was a release for me. 

I am so glad you mentioned continuing community education. You can take a short and sweet one-night course or something that is a few weeks longer, and some with certificates. It doesn't matter if you are learning art or mechanics, discography, Italian cooking, ESL, or a business skills course--it's important that you are learning something new but you are also in an environment where you learn through osmosis. You learn things, related or not to the class, from the other students there too. Each community usually has schools or libraries that send out a list of courses, where they are available and with a free to $$ price range. County and town parks have classes and exercise programs. If you are a senior there's a break in the price practically everywhere for continuing ed.  Always, ALWAYS sign up for the exercise classes ASAP if you are doing jazzercise, yoga or zumba, etc. They sell out immediately as they are a bargain compared to a gym and no contract either. Win. 

T

[GardenGal]

Dear BuffRockChick :-). Love your name. Your concerns resonate with a lot of my closet fears, and I'd be very interested in any research you find. Though I've heard of reliable research documenting cerebral hypoperfusion, I have not found reliable studies outlining progressive cognitive decline secondary to it. That being said, it makes sense to me. As we know that other forms of restricted cerebral oxygenation (as in an extended code situation) or hypo perfusion (as with stroke) obviously cause cognitive impairment... why would hypo perfusion over time as with dysautonomia not cause the same outcome? Though the mechanism of poor blood flow (pooling in lower extremities causing cerebral hypertension, cranial vascular spasm, etc) are different, why wouldn't it be the same result? Anyway. I don't mean to be dower. On the same front, I will say that I lived for a long time with an incredible amount of brain fog and confusion that has now had significant improvement, for which I am extremely greatful! I probably have not said anything new to you here... just appreciate not being alone in my concern over this and value any input/resources you gather. 

Best of luck to you, Katie

[toomanyproblems]

I know this is an old thread but I wanted to comment. I've been diagnosed with mild cognitive impairment. I'm 67 and have had POTS for at least 14 years. I suspect that this is vascular dementia caused by POTS. I'm looking into having it diagnosed properly so it can be treated/managed properly. It's a fairly rare form of dementia but it totally makes sense in a POTS patient. I'm currently on Namenda. 

[MikeO]

Often wondered about this. dementia is still not understood. rumour is it is caused by lewd body lesions. so that is a concern of mine since i was diagnosed with neurogenic hypotension. question is will i convert to something other than what i am dealing with. 

[p8d]

@toomanyproblemsI am sorry to hear about your diagnosis. It makes intuitive sense to me that the two are related. I hope that the med helps and that you can get treated properly. Wishing you all the best. Please let us know if you discover connections/treatments.

[toomanyproblems]

18 hours ago, p8d said:

@toomanyproblemsI am sorry to hear about your diagnosis. It makes intuitive sense to me that the two are related. I hope that the med helps and that you can get treated properly. Wishing you all the best. Please let us know if you discover connections/treatments.

Thank you. I'll report anything useful I find. One problem I'm having is not being able to understand what I'm reading after a few sentences. This has been pretty hard on me. I can't do much physically. Now I can't even read and study.

[p8d]

I know that you are a scientist and I am/was as well and not being able to read would be devastating. It will make advocating for treatments more difficult. I hope that you have a good team of Drs and a supportive family and friends. Sending virtual hugs.

[toomanyproblems]

On 8/3/2021 at 8:33 AM, p8d said:

I know that you are a scientist and I am/was as well and not being able to read would be devastating. It will make advocating for treatments more difficult. I hope that you have a good team of Drs and a supportive family and friends. Sending virtual hugs.

Thank you p8d. I know you understand how hard this is for me. I found out today that the neurologist who was very smart about my POTS has moved away so the proper testing to get a vascular dementia diagnosis, if that's what it is, seems out of reach right now. The lack of common medical knowledge about POTS is so frustrating.

Over the last few days I've had some bad experiences that are pretty obviously the result of my cognitive impairment diagnosis and being on Namenda. As in I was having a conversation that was abruptly terminated as soon as the other person reviewed my med list (pharmacist who actually called me about something) or my list of diagnoses (a nurse at an appointment who I was asking a question). My questions were reasonable but after they saw the cognitive impairment stuff, they just stopped engaging with me without even trying to be subtle. I can see their side, I guess, they don't know how far along I am, but it's going to be really hard for me for people to not even try to take me seriously or listen to me or answer my questions. I don't even know how to handle this new stuff. I've had so many medical problems over the years but this is a whole new challenge and it may be the worst one yet.   

[Teodor]

https://neurosciencenews.com/calf-muscles-dementia-19069/

[Teodor]

On 7/14/2017 at 5:56 AM, GardenGal said:

On the same front, I will say that I lived for a long time with an incredible amount of brain fog and confusion that has now had significant improvement, for which I am extremely greatful!

What are the medicatications or lifestyle changes that gave you the most improvement?

[toomanyproblems]

1 hour ago, Teodor said:

https://neurosciencenews.com/calf-muscles-dementia-19069/

Wow. Thanks for this. My reading comprehension is very poor these days but I got the gist of it. I'm gong to schedule time on my recumbent bike everyday after reading this. I'm willing to do anything to help.

The low diastolic pressure finding is very interesting. I mean, in my case, you can't have chronic dizziness and intermittent passing out from lack of blood flow to the brain when standing for years and not expect that it will eventually affect your brain. 

[MikeO]

19 minutes ago, toomanyproblems said:

https://neurosciencenews.com/calf-muscles-dementia-19069/

This is an interesting article. I can confirm that when my Diastolic pressure is low i will have an uptick in symptoms "dizziness, Brain Fog ect..." I know the clinic is targeting on keeping my bp elevated and specifically my Diastolic blood pressure. I do have PVD and some mild to moderate blockages in my legs. Hope this does not come back to bite me.