Who Has More Brain Trouble Than Body Trouble?

[green]

Hello,

I am wondering whether it is unusual for someone with autonomic dysfunction to have more difficulty with cognition than with movement.

I have been diagnosed with neurocardiagenic syncope. I have some of the more typical symptoms: I have trouble standing still for more than a few minutes, trouble walking around when the temperature is over 80, I feel dizzy after going up a flight of stairs. However, it seems like I have a *light* case - I workout regularly and go on long runs a couple times a week, and I've never passed out.

My chief complaint is with brain fog. I have trouble remembering things for short periods of time, I have trouble following directions, and I have poor concentration skills. I often seem to get OI symptoms while trying hard to focus - while reading, for example, I often become overwhelmingly tired and feel weak in the arms, but, just as often I recover 15-20 minutes after I stop trying to read and go do something else.

I am looking to hear from other people with autonomic problems who have had, or are having, a similar experience. I would like to know about the history of your disorder, and whether anything has helped your brain fog. My neurologist doesn't seem to know anything whatsoever about dysautonomia and I've found journal articles to be vague.

I have tried stimulant medications, strattera provigil, and guanfacine. Provigil helps me the most, because the other sitmulants cause anxiety. Guanfacine also helps a great deal, but it exacerbates the OI.

[Ernie]

HI,

My worst symptoms are physical but I noticed that when I started to take salt my cognitive symptoms improved a lot.

[momofsara]

Yes, Sara has many of the problems you note. She has great difficulty in following instructions, and reading has become too much for her, she becomes overwhelmed with trying to retain what she has read. She suffers from "brain fog" almost all the time. Her cognitive skills are very decreased. Hope you continue to have as much normalcy to your life as it seems you have now. Best wishes and welcome to the forum. Susan

[jbrian00]

Just wondering, are you on any meds right now?

[delphicdragon]

Used to be very sharp, to the point where I didn't have to study for most subjects at school. That changed when the POTS hit. Senior year of college (about 2 years ago) I found I could no longer study. It didn't matter how long I looked at the material or what technique I used, the information would NOT implant itself in my brain. It felt like my ability to learn disappeared.

I'm in graduate school now, and I specifically do NOT take classes that call for tests. I can integrate new information just fine into papers and discussions as long as I have my detailed notes in front of me. The stress of the exam triggers the POTS and makes any hope of recall vanish.

I used to be able to focus on three or more tasks at once, (e-mail, TV in background, spreadsheet, novel, etc) and I loved the freedom flicking from task to task gave my mind. It's too much of a hassle now and everything blurs together. The only difference is the POTS.

I would say though that my main problem is my body as I feel really limited in my abilities just because I don't have the energy to do simple things and my body crashes out quite fast when under any stress. I'm sure if I could get the physical symptoms under control I'd be much more concerned about the brain fog.

Sara

[pat57]

Like yourself, I have neurocardiogenic syncope. I also have orthostatic hypo tension. I have actually no problem with movement - except stairs when I am wearing compression stockings. To stand or sit still is the problem.

I have poor cognition. My first indicator of an NCS event is either heavy feeling in the legs or being dazed. I know beyond a doubt that BP fluctuations

effect my cognition. I can't know if its always the reason. I don't think it could be, because its so chronic.

[green]

Just wondering, are you on any meds right now?

Provigil, singulair, guanfacine and depakote.

Depakote can cause brain fog, but I am on a low dose, and I think the brain fog improved a bit with it.

[green]

Used to be very sharp, to the point where I didn't have to study for most subjects at school. That changed when the POTS hit. Senior year of college (about 2 years ago) I found I could no longer study. It didn't matter how long I looked at the material or what technique I used, the information would NOT implant itself in my brain. It felt like my ability to learn disappeared.

I'm in graduate school now, and I specifically do NOT take classes that call for tests. I can integrate new information just fine into papers and discussions as long as I have my detailed notes in front of me. The stress of the exam triggers the POTS and makes any hope of recall vanish.

I used to be able to focus on three or more tasks at once, (e-mail, TV in background, spreadsheet, novel, etc) and I loved the freedom flicking from task to task gave my mind. It's too much of a hassle now and everything blurs together. The only difference is the POTS.

I would say though that my main problem is my body as I feel really limited in my abilities just because I don't have the energy to do simple things and my body crashes out quite fast when under any stress. I'm sure if I could get the physical symptoms under control I'd be much more concerned about the brain fog.

Sara

I want to go to graduate school myself.

What are you studying? Did you disclose your condition to your program?

[delphicdragon]

I want to go to graduate school myself.

What are you studying? Did you disclose your condition to your program?

I hope you find yourself able to go to grad school. It's an awesome experience! I am studying biomedical sciences with a concentration in Skeletal, Crainofacial and Oral Biology. I've been studying uCT technology as compared to Histology, but that will change soon when I start working on a third rotation which I'm thinking is going to be more cell-culture and mouse model based. (Yeah for glowing mice!)

My condition was disclosed when I started the program, even before that. I wrote about my condition in my entrance essay (just the Ehlers-Danlos, wasn't aware of the POTS then). I met with disability services before I started the program and have met with the coordinator multiple times to make sure that my needs are being met. Yes, this program is probably going to take me longer than it would someone without this condition, but I am hopeful that I will finish it in the end.

I have a friend with Ehlers-Danlos, who didn't disclose her condition and refuses to. It's much harder for her to get the days off she needs and she has collapsed in pain and been sent home often. I would rather my PI (boss) know that I'm sick and therefore help me work within my capabilities, not push me to the breaking point.

Good luck to you!

Sara

[momdi]

I can't locate it right now, but in Dr. David Goldstein's book, "Adrenaline and the Inner World", he talks about the increased stress on the autonomic nervous system (so, increased neurotransmitters)

whenever mental concentration or effort occurs.

[lorrie]

I think I feel more troubled by my body most of the time, but at times the brain fog gets the best of me too. Mostly on the days that my body is "behaving" pretty well is when the brain fog is most frustrating. I guess because I am not so overwhelmed with the possibility of falling face first on the floor.

Brain fog has hindered many areas of my life...work, family, friends, etc. I find myself in the middle of a sentence and unable to think of a word...this happens very often. I also forget to run errands that are important and have had electricity turned off because I forgot to pay the bill. I left a friend sitting at a restaurant waiting because I forgot we were meeting for lunch.

Things like this make me feel so stupid...I used to be so organized and on top of everything. It is just one more part of this disorder that leaves me frustrated.

I had a psychologist tell me I had adult ADHD and the early stages of dementia...these diagnosis's were made after a 20 minute discussion and NO testing! I never returned to him because he actually laughed when I began telling him my concerns about the forgetfulness. Not really a funny thing to me!!!

[bjt22]

Its a big problem. For me, much of it goes along with the general light headedness. Its one of the reasons I don't go out on my own very often...I've had more than a few very embarrassing incidents. I've forgotten how to use an ATM card, where things are located in a store, how to get out of the store, etc. Last year, I forgot how to vote on election day. As bad as this sounds, my cognitive and memory abilities are somewhat better since I've been on a diuretic and have better control of fluid levels. When I was carrying around at least 20 excess lbs of fluid, I wasn't even allowed in the kitchen as I'd sit there and let things burn. I'm ok now as long as I don't leave the kitchen...its still "out of sight, out of mind".

[Megan]

I do pass out sometimes, but I think I would describe brain fog as my worst symptom. I often burst into tears because of it...I just can't take it! My diagnosis is POTS. I take omega-3 fish oil supplements (just over the counter) twice a day and I find that they help with concentration. Also, I'm on prescription Cerefoliln (folic acid, essentially) for concentration. I'm on a whole host of other meds, but I notice a big difference with those two and brain fog. College would be awful without them. (Journalism major...lots of reading and writing!)

Meg