New Onset Aphasia and Stuttering!!

[MeganMN]

Hello gang.  So I had noticed since all this began that I occasionally have a 'word salad' problem and expressive aphasia (say fridge when I mean stove, etc) and now have begun stuttering.  This with the constant dizziness.  Have not noticed any sort of pattern.  Anyone else?

[Pistol]

@MeganMN - yes, I have this frequently when I overdo things. It is part of brain fog and is - so I have read - caused by decreased circulation to the brain. In my case that must be true - when I wake up after seizures from sudden vasoconstriction I cannot speak anything understandable - I cannot pronounce words or even find the ones I want to say. This lasts for about 30 minutes. Today I barely take seizures anymore ( thank god and IV fluids!!!! ) but I still get the wordfinding problems and slurred speech when I have been too active. Lying down and resting helps. --- Have you checked your HR and BP when you get like that? --- It also can be a sign of poor attention ( which is common in POTS ). I take Ritalin to help with fatigue and brain fog and it has been very effective for me. 

[bombsh3ll]

Hi Megan,

Yep same here! Sounds like the very familiar symptoms of cerebral hypoperfusion. 

Have you had a brain scan though just to make sure everything is structurally sound?

B xxx

[Clb75]

I get bad brain fog too...I have trouble finding words, either can’t think of it or will substitute another word that I didn’t mean to say. Or if I remember the word, it takes a minute before I can spit it out. Sometimes reading is hard.  I have a terrible short term memory too! I forget things in general and especially if I get interrupted in the middle of something. I’ve left clothes in the washing machine for three days, left appliances on in the kitchen etc. 

[p8d]

Yes, I get this too.  I also got it pre-pots with migraines.  I can’t find words, say the wrong thing, concentrate well.  I no longer can read difficult or long material because I cannot focus that long and/or forget what I read before.  I read series of books so I don’t have to deal with many new characters and read paper books so I can skip back and forth to re-read what I have forgotten.  It’s especially worse when I have overdone it.  I take guanfacine as an alpha blocker which is an ADHD drug and helps a bit and I take modafinil as needed for the fatigue.  

[MeganMN]

So are there any known chronic/long term health effects of Cerebral Hypoperfusion?  Obviously it causes distress, but any studies on long term outcomes?

[MeganMN]

2nd question.  If symptoms are caused by cerebral hypoperfusion but NOT pooling, are there any medications that can help that?

[Pistol]

@MeganMN - venous pooling IS a type of cerebral hypoperfusion - the blood goes "south" and not into the brain, because the blood vessels cannot establish the blood pressure needed to pump the blood back up to the brain. Vasoconstriction is another mechanism but has the same effect - not enough perfusion in the brain.  

No - My doc and I have considered long-term effects of the hypo-perfusion ( since my seizures would cause between 15 - 45 seconds of severe hypoperfusion. And no - there are no known long term effects. I was evaluated by a neuro-psychologist twice ( 3 hours each ) to determine if the seizures or the general hypo-perfusion as well as the concussions obtained during falls could have contributed to my ongoing issues with forgetfulness, ADD, brain fog, wordfinding difficulties and short-term memory loss. In my case there was no proof of any damage ( even after two brain MRI's ).  

[MeganMN]

@Pistol thanks for the info!  That is very helpful.  Wish there was something I could do, I feel stupid...Hard to be Critical Care Nurse and not be able to think or talk.....Nothing so far seems to be helping- meds, salt, water, etc.....It is discouraging.  Regardless of where things go with the Endocrine/Carcinoid workup, it is obvious that the POTS diagnosis sticks....and stinks....!!

[bombsh3ll]

29 minutes ago, MeganMN said:

@Pistol thanks for the info!  That is very helpful.  Wish there was something I could do, I feel stupid...Hard to be Critical Care Nurse and not be able to think or talk.....Nothing so far seems to be helping- meds, salt, water, etc.....It is discouraging.  Regardless of where things go with the Endocrine/Carcinoid workup, it is obvious that the POTS diagnosis sticks....and stinks....!!

That's so true! I do think that chronic cerebral hypoperfusion cannot do any good. Reduced blood flow to the brain has been implicated in the development of dementia, but no such studies have included or focused on dysautonomia patients, so I think that for us it is still very much an unknown. Given the condition was only formally classified in 1993 I think it will probably take longer before this becomes known, that is indeed if anyone is actually conducting any long term follow up of POTS patients. 

It may be that because we lie down at night, our brains have a sufficient period of adequate blood flow to refuel, nourish and detoxify, therefore negating some of the effects of daytime hypoxia. 

B xxx

[JimL]

I've had something similar, like a brain fart/stutter. Very disconcerting. I thought, am I having a stroke? 

[MeganMN]

@JimL I often have this thought. How would I even know the difference? I feel like this disorder is making me paranoid of every little thing my body does. Or doesn't do.

[JimL]

9 minutes ago, MeganMN said:

@JimL I often have this thought. How would I even know the difference? I feel like this disorder is making me paranoid of every little thing my body does. Or doesn't do.

It seems to happen if I stand up for a while.