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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

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@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. 

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I have slurred speech and trouble finding my words that comes and goes. Actually how I finally ended up with a POTS diagnosis after years of unexplained symptoms was started when I went to the ER with signs of having had a stroke.  The first time I went to the ER for this I was diagnosed with psuedo seizures.

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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? 

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@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 ). 

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5 hours ago, POTSie78 said:

I have slurred speech and trouble finding my words that comes and goes. Actually how I finally ended up with a POTS diagnosis after years of unexplained symptoms was started when I went to the ER with signs of having had a stroke.  The first time I went to the ER for this I was diagnosed with psuedo seizures.

Thats what they diagnosed me with pseudosiezures. They got this wrong in my opinion. Do you still get seizures?

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I find the slurred speech is when I've worn myself out being on my feet too long and it definitely feels like i haven't got enough blood going to my brain. Im always off balance (I have got probs with my ears mind) 

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@Aghast - I don't get slurred speech as much, but I do have trouble forming words sometimes. I also have a lot of problems with word recall and with thinking. And fatigue only makes it worse. If I could find something to help then I would tell you, but I haven't found anything so far.

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1 hour ago, Nin said:

Thats what they diagnosed me with pseudosiezures. They got this wrong in my opinion. Do you still get seizures?

I don't have pseudo seizures, I have autonomic seizures - also called hypoxic seizures. They are caused by cerebral hypoxia from excessive vasoconstriction, as shown on longterm EEG with telemetry. And no - I RARELY ever have them anymore, thanks to IV fluids!!!!! 

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5 hours ago, Nin said:

Thats what they diagnosed me with pseudosiezures. They got this wrong in my opinion. Do you still get seizures?

I mostly just have the slurred speech and completely forgetting what I'm in the middle of doing or saying.  I figured out to elevate my legs to keep from fainting. This happens often and is definitely worse when I'm tired or stressed. The latest thing I have noticed is my face turns bright red, I start sweating profusely, I'm short of breath and get super hot if I try to be on my feet at all.   This will go on for hours.  I feel like I'm getting weaker as the days go by.  I am hoping this is just a flare.

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4 hours ago, Pistol said:

I don't have pseudo seizures, I have autonomic seizures - also called hypoxic seizures. They are caused by cerebral hypoxia from excessive vasoconstriction, as shown on longterm EEG with telemetry. And no - I RARELY ever have them anymore, thanks to IV fluids!!!!! 

Being newly diagnosed with POTS the more I learn the more I question my diagnosis of pseudo  seizures.   6 years ago I collapsed and when I came to I could barely speak and when I did I stuttered.   I couldn't get on my feet so I had to crawl to my phone to get help.  I went to the er and they checked me for a stroke and then admitted for a few days and gave me anti seizure meds.   They then transferred me to another hospital who did a video eeg for a few hours.  They couldn't find anything so they gave me that diagnosis. 

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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.

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C

9 hours ago, Pistol said:

I don't have pseudo seizures, I have autonomic seizures - also called hypoxic seizures. They are caused by cerebral hypoxia from excessive vasoconstriction, as shown on longterm EEG with telemetry. And no - I RARELY ever have them anymore, thanks to IV fluids!!!!! 

Can relate :)

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6 hours ago, POTSie78 said:

 6 years ago I collapsed and when I came to I could barely speak and when I did I stuttered.   I couldn't get on my feet so I had to crawl to my phone to get help. 

@POTSie78 - yup, I have been in your shoes many times before! In my case I have both high and low BP. When my blood vessels dilate suddenly I pass out, and when I come to I am drunk-like - slurred speech, am in a fog, sluggish. When my vessels constrict suddenly I will have chest pain, a "blank" feeling and then I have seizures. They last anywhere from 15 seconds to a minute. Afterwards I am groggy and sleepy but the BP is usually down. For me it seems that both - syncope and seizures - act somewhat as a reset and I am better for a little while. The crawling is also something that I experience - but normally just BEFORE the episodes. 

It is pretty clear that you are unstable in your symptoms and need to be better controlled on meds. I always benefitted greatly from a few bags of IV fluids over a day - not infused quickly but rather over several hours. The added volume seems to create enough steady pressure within the vessels to counteract the ANS from responding inappropriately. I used to literrally CRAWL into the hospital after seizures or syncope, unable to talk right or think straight or walk ... and after a few hours I was talking, laughing, on the phone, walking to the bathroom - and the next day I would leave the hospital skipping and hopping. It is truly a miracle when you see it! Unfortunately I ended up in the hospital every 6-8 weeks, so my doctors agreed to a port and now I get infusions at home, at least once a week but more if needed. I have had NO seizures or faints this year at all, and last year only twice, due to triggers ( Prednisone and illness ). 

Depending on what country you are from your doc might consider IV fluids for you, just to bring you out of the slump. I used to also get them as an Outpatient in an infusion center, 1-2 bags weekly during flares. My autonomic specialist gave me a standing order and I just went in for the fluids whenever I was bad. 

Also - since you are newly diagnosed you are most-likely not yet well controlled on medications. There is no ONE med that helps everyone - it is usually a combination of meds that helps. It took me years after diagnosis to find the right combination, and I had to try many that did not work. A TTT often clues us in as to what exactly happens during these episodes, and with that there are treatment possibilities. The docs need to determine if you vasodilate or vasoconstrict - that is a big clue as to what meds could help you. However - in my case I do both, and IV fluids help for both. 

I know it is frustrating and scary to go through this, and it is frustrating for both you and your doctor ( not to mention your family ) when medications don;t help. But have hope - as long as you keep trying new meds you will find what helps. Hang in there!!!!!

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1 hour ago, Pistol said:

@POTSie78 - yup, I have been in your shoes many times before! In my case I have both high and low BP. When my blood vessels dilate suddenly I pass out, and when I come to I am drunk-like - slurred speech, am in a fog, sluggish. When my vessels constrict suddenly I will have chest pain, a "blank" feeling and then I have seizures. They last anywhere from 15 seconds to a minute. Afterwards I am groggy and sleepy but the BP is usually down. For me it seems that both - syncope and seizures - act somewhat as a reset and I am better for a little while. The crawling is also something that I experience - but normally just BEFORE the episodes. 

It is pretty clear that you are unstable in your symptoms and need to be better controlled on meds. I always benefitted greatly from a few bags of IV fluids over a day - not infused quickly but rather over several hours. The added volume seems to create enough steady pressure within the vessels to counteract the ANS from responding inappropriately. I used to literrally CRAWL into the hospital after seizures or syncope, unable to talk right or think straight or walk ... and after a few hours I was talking, laughing, on the phone, walking to the bathroom - and the next day I would leave the hospital skipping and hopping. It is truly a miracle when you see it! Unfortunately I ended up in the hospital every 6-8 weeks, so my doctors agreed to a port and now I get infusions at home, at least once a week but more if needed. I have had NO seizures or faints this year at all, and last year only twice, due to triggers ( Prednisone and illness ). 

Depending on what country you are from your doc might consider IV fluids for you, just to bring you out of the slump. I used to also get them as an Outpatient in an infusion center, 1-2 bags weekly during flares. My autonomic specialist gave me a standing order and I just went in for the fluids whenever I was bad. 

Also - since you are newly diagnosed you are most-likely not yet well controlled on medications. There is no ONE med that helps everyone - it is usually a combination of meds that helps. It took me years after diagnosis to find the right combination, and I had to try many that did not work. A TTT often clues us in as to what exactly happens during these episodes, and with that there are treatment possibilities. The docs need to determine if you vasodilate or vasoconstrict - that is a big clue as to what meds could help you. However - in my case I do both, and IV fluids help for both. 

I know it is frustrating and scary to go through this, and it is frustrating for both you and your doctor ( not to mention your family ) when medications don;t help. But have hope - as long as you keep trying new meds you will find what helps. Hang in there!!!!!

Thank you for the encoragement. I'm in the US and I did have a TTT that showed POTS and probably hypovolemic. I've been on propranolol er and meds for migraines.  I also was told to drink Gatorade everyday but my sodium barely in the normal range. I've been switched to the non er propanolol  recently because my pulse and bp have not been controlled and now I have an implanted loop recorder for my arrhythmia and chest pain.  I also have not been tested for vasoconstriction/dilation nor have I been treated with IV fluids. I found a dysautonomia specialist at the Mayo clinic I will see in a couple weeks but the long wait to get in has been hard.  I've missed a lot of work and have exhausted my PTO and am on FMLA to try and protect my job while things are being figured out.

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@POTSie78 - that is what happened to me as well, I ended up using up all of my FMLA waiting for treatment. Hopefully this will not be the case for you 🥺! At least you can have hope that the Mayo doc will be able to help you! Best of luck!!!! Please keep us updated!

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