Aghast

10 hours ago, Pistol said:

@Aghast - I used to wonder the same thing. For me the hypoxia got so bad that I took seizures, so I was concerned about permanent damage. But the neurologist I was referred to ( and confirmed autonomic seizures ) said that it does not cause permanent damage. The seizures are caused by COMPLETE loss of circulation and don;t last long enought to cause permanent damage, and during the times of slurred speech etc the brain still receives enough oxygen ( although obviously less than optimal ). 

Thank you, this helps me feel a bit better about the whole situation.

8 hours ago, Pistol said:

@Aghast the symptoms you describe are actually very common POTS symptoms. They are all part of brain fog, which is caused by not enough blood reaching the brain. This can in some people lead to syncope, but does not have to. There are many posts dealing with brain fog on this forum, you might find a search helpful. 

I used to get these symptoms often, but now thankfully much less ( I am controlled on my medications, including weekly IV fluids ). I would not be able to find the right words, slurr them or replace them with wrong words ( this can get quite funny!!! ). What has been helpful for brain fog for me is SSRI ( I take Lexapro ) and Ritalin, but also Beta blocker and Calcium Channel blocker. The latter may not be for everyone since it is a vasodilator. Depending on the type of POTS you have the lack of circulation can be caused by dilation OR constriction of the blood vessels, so the medications can be very different. 

As long as you are not medically controlled for the symptoms and adequate circulation is not restored the only thing that helped me is rest. Unfortunately this symptoms has landed some of us in bed - and bed rest makes EVERYTHING worse. POTS is not ONLY about tachycardia when standing!! Talk to your doctor about this being a symptom of POTS. Once the brain circulation is restored with medications the symptoms usually disappears - or only returns with flares. Here is one post about this from our forum search, but there are many more: 

Slurring Words a Precursor POTS flareups? - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

Also - loss of balance, as you mention, is also a symptoms of POTS, with or without dizziness. It ican be caused by cerebral circulation changes as well. 

Thank you for all of this information. Although the idea of a lack of circulation to my brain is pretty concerning lol. Is this something that could damage the brain or is it just a functional issue? 

Does anyone else have problems with things like speech production, balance, and various mental processes? I know that brain fog is a huge part of pots but this seems to be something else and I haven’t seen a lot of people talking about symptoms like this. I almost constantly have slightly to moderately slurred speech. It feels like my tongue is just too heavy or slow or something. I also have issues saying words in the right order and replacing certain sounds like s and th. I’m also constantly in a “daze” and it feels like I’m one step away from reality, kinda like being drunk but without the fun parts lol. I got an MRI done about 6-7 months ago after the speech issues started but it came back normal. If anyone has any advice or can relate I’d appreciate your time. Thanks

1 hour ago, ramakentesh said:

These were catagories designed by Stewart and Medow to subtype based on cutaneous blood flow.

The low flow subtype were almost exclusively female, generally had low body mass index, low blood volume and resting vasoconstriction but felt profoundly worse when given IV Vitamin C to improve flow-mediated dilation. These were asdociated with excessive angiotensin II in serum which more recently appears tied in some to autoantibodies agonising Angiotensin ii receptor type 1 (AT1-r) - MAS aabs suppress renin aldosterone which is believed to partially explain the volume deficits.

High flow have excessive blood flow and microvascular filtration in hands and feet which were warm to touch.

Normal flow was the most common and pooled exclusively in the stomach venous circulation.

The resulys suggest that all three forms had pooling in one region.

 

Well I definitely get pooling in my feet, hands and legs but my feet and hands are freezing cold, not warm. They were hot to the touch when this started which kinda leads me to believe that I have the high flow subtype and my body is trying to compensate by shooting off a bunch of adrenaline thereby causing a lot of peripheral vasoconstriction. Does this sound plausible? Also, are there differing prognosis’s for the different flow types or are they pretty much the same in that regard? Thanks

This question is mostly geared towards the high flow/ low flow classification. I’m trying to figure out what kind medicine would be the most beneficial. This all started about a year and a half ago and the first symptom I remember experiencing was extremely cold fingers reminiscent of raynaulds syndrome, then the blood pooling started and my legs and feet were constantly bright red and hot to the touch when I was standing/sitting. However over time this has changed and now when the pooling occurs my legs, hands etc take on a more purplish hue and are normally cold. My feet are almost always freezing cold now even when I’m laying down, to the point that it’s painful. They also often have a mottled appearance. I haven’t taken any medication for this yet so I can’t say how any of that would affect me but I have had a few iv saline infusions that seemed to help a bit for about 3 hours lol. I’d say the most bothering symptom I have is brain fog to the point where it’s hard to talk and I often slur my words and what not. I am a 22 year old male of that matters. If anyone has any insight I’d appreciate your input. Thank you 😊