I Feel Like I'm Living In A Dream.

[bizbiz]

Since I have had POTS I feel like I live in a dream. Most of the time when I am at home I am fine, but then once I go out I start getting foggy and things become very unclear for me. I'm not sure of the best way to describe it, but it feels like I'm out doing things half asleep. I guess this is what everyone calls brain fog?

There are times when I can go out and be fine, have conversations and feel confident, social and back to 'normal' (I almost forget I have POTS), and yet other times I go out and have conversations with people and hope I dont say anything stupid because I feel like I dont really know what I am saying and am almost on auto-pilot.

I seem to be fine when talking to my husband at home, or in situations where I am comfortable (like if I go out for dinner with my friends, or have guests over at our place), but if I'm talking to a stranger I start to feel very 'dreamy', cant seem to get my words out, dont know whether I've actually said something or just thought it in my head, and almost start to stutter because I feel so nervous. I have never been like this before - I have always been very confident (embarressed to say I used to love being the centre of attention (show off!!)) but now it's gotten to the point where if a stranger makes a comment to me I just stare blankly because I dont know what to say and then I just want to run away.

Does this sound like POTS, or have I gotten so anxious and self conscious that I'm doing this to my self? Its getting very frustrating for me because apart from a headache and some mild tachycardia (that is pretty well controlled with BB's), this brain-fog / fatigue are my only symptoms.

[MelissaCrystal]

I'm pretty sure it's related to brain fog, or lack of bloodflow to the brain somehow, because I feel like this if I go out without eating breakfast. So my BP must be pretty low when I experience this... I also REALLY feel like this whenever I try to exercise. Afterwards I'm floaty and I feel kind of high, but not in a good way, it's sort of a dizziness like I'm not all there in my head.

[Csmith3]

I agree, sounds like POTS.

Perhaps there is another explanation of why you tend to have the problem when speaking to strangers. When you are at home with your family or have guests, you may feel better because you haven't been stood up so much. If you started to feel ill, you would probably just sit down. I find I tend to be spaced out and have difficulty communicating when I'm out and have been stood up too long (eg, shopping or running an errand when it's not convenient to take a rest). Perhaps that is when you remember bumping into strangers and finding it hard to concentrate? Because suddenly stopping to chat to someone in the street when you are already feeling ill will make matters worse by further encouraging blood pooling, which will increase your heart rate. We've all done it, but don't be too quick to extend the diagnosis to anxiety, because it is probably POTS.

[Guest tearose]

It sounds like POTS to me. It is frustrating I know.

I think our brain gets use to less oxygen and there are times we just can't get information out. It is brain fog. I bet if you stood there a few more minutes you would have felt the adrenaline dump. I think the brain fog is part of the early warning system that we need to sit down or go horizontal.

I too use to be a "leader, speaker, activist" and now I have trouble putting my thoughts together at times in a coherent sentence.

I am hoping a new supplement I am trying may help me. I will let you know if it does in about a month. I am using Inosine.

best regards,

tearose

[cvincent]

This definately sounds like POTS. I expirience this even when I'm at home or just talking to my sister on the phone. I sometimes find myself saying things that don't even make sense. I have trouble with word recall and sometimes slurr my words and stutter. It can be extremely frustrating because I feel like a moron when Im talking to people. Before I became sick I never had any of these problems.

Candace

[Katja]

I have this - it's very, very similar to what you describe. I feel that it is related to the ANS dysfunction (I don't have a specific diagnosis yet, testing on Friday), as it's often triggered by the same things that trigger my other symptoms (being upright too long, mostly, or too much exertion), and because the same things that help with the ANS symptoms help so significantly, and often immediately, with everything you described - compression stockings/abdominal binder, rapid water ingestion (this is a really big one), lying down for a while, squeezing my leg/abdominal muscles, medication (Florinef).

I've had this for so long, at this point, that most of the time, I'm no longer very self-conscious about it, and have found that making some kind of offhand/humorous matter-of-fact excuse (sorry I'm very foggy - I caught a virus/have health problems/didn't get enough sleep, clearly) usually helps - people are often quite understanding and accommodating, as long as they don't have to use their imagination as to what the h*** is going on . It's taken years for me to come to terms with this, and learn how to handle myself when this happens, though.

[firewatcher]

I have this too, my boss and my husband say that I slur my words and it sounds like I am drunk (very embarrassing at Church )

I get all fuzzy headed and can't remember how to finish my sentences. Sometimes if I lie down it will get better. I hate the "feeling stupid" part of POTS! It's bad enough I can't do half what I want to, but to lose my mind hurts even worse!

Jennifer

[all4family]

I also have this experience. I had it very severe for the first 3 years I was sick (24 hr a day). I thought it was from the medication I was on. It did improve greatly after getting off the medicine, but I still get it.

Suzy

[bizbiz]

Thanks for the input guys. Its sad to say but I feel better knowing I'm not the only one 'going stupid'!

I just found it strange that it didnt happen to me all time...kind of like it would switch itself on and off whenever it felt like it, regardless of whether I had been up for too long or not. Oh well...

Tearose - keep us updated on the Inosine. It would be fantastic to find something that helps with the fog!

[summer]

Yes! I think you described it really well. It is sort of a "dreamy" feeling for me too. I can often feel it setting in as my day goes along. I usually feel clearer in the morning, then from about lunch time on the fog sets in - although, it is not always this predictable. For me, I would say, it's the most disabling part, and the reason I have not been able to work as an RN.

[ramakentesh]

This is one of the main and cardinal symptoms of POTS - if you stand too long you will reduce blood flow to the brain. If you enter over-stimulating environments you will also find that this symptom will occur. Whether its from blood pooling or from an excessive sympathetic nervous system response to standing (both are apparent in POTS) it results in the same feeling.

POTS patients tested have a reduction under orthostatic stress of between 44% and 60% of carotid artery blood flow. No wonder we feel so spaced out at times.

I find that sitting down helps. eating licorice can give you a sudden spike in BP that can help this as well. i also find that drinking a small amount of alcohol in overstimulating situations helps me keep my focus rather than spacing out from background noise at a social event. Shopping centres are the worst for this - I tend to feel dizzy quicker in those kinds of places and I think its just from the overstimulation. its commonly reported either way.

[cma]

Wow, this is exactly how I feel . This symptom of unreality is so much worse when I am in the supermarket or places with many ppl like restaurants that for a very long time I thought it was anxiety related, but I also have it at home. Some days it is very obvious some I barely notice it. I don't lose the thought that I was trying to express, but I feel so unreal like you said like in a dream, when I walk it almost seems that the legs are not mine and that they won't listen to me, but they do It is so hard to explain this to the doctors and one even told me that these are the first symptoms of MS, but after me mentioning that I had an MRI and it was ruled out done he only shruged. What is interesting that the feeling of unreality is one of the symptoms for anxiety also so maybe it is related with adrenalin rush.

cma

[HoudiniCat]

I experienced this too and it?s a different kind of feeling than the ?brain fog? feeling. Kinda feels like I?m going about my day a little drunk and spacey. Makes no difference if I?m standing or sitting, talking to strangers or talking to my Mom, HR and BP perfectly fine or way out of whack ? it just seems to happen throughout the day with no rhyme or reason. I thought it might be tied to anxiety and researched derealization/depersonalization but for me, I think this symptom is purely ANS malfunctioning and POTS related. Sorry you all are experiencing this too but I do feel better knowing I?m not the only one.

[valliali]

i could have written your post, word for word, myself. the brain fog is killing me. i too have had my heart issues more under control thanks to bbs, but i am, at all times, totally checked out of the world. i can't stand it anymore. i just found out today that my vit d is low, so i just got supplements and can only help that rejuventates me a bit. i used to be very energetic, talkative, center of attention type too, so this is a HUGE change and it's not a good one.

[momofsara]

I have this too, my boss and my husband say that I slur my words and it sounds like I am drunk (very embarrassing at Church )

I get all fuzzy headed and can't remember how to finish my sentences. Sometimes if I lie down it will get better. I hate the "feeling stupid" part of POTS! It's bad enough I can't do half what I want to, but to lose my mind hurts even worse!

Jennifer

Sara has this same problem with her speech. She also "loses her place" in the middle of a sentence, has trouble finding her words, etc. Yes it is very frustrating, and embarrassing for her. She will look at me sometimes and say," Mama, what is the word I'm looking for?"....... I guess it must be a common problem..

Susan