Staring

[Aquadiva]

My daughter stares a lot when her POTS is not doing well. She will just sit there and stare at nothing. She says she is aware of what is going on around her, but it is too hard to even concentrate on anything. Like she is too fatigued to even focus her eyes. Is this typical? I am thinking it is, but also worry that it could be some type of seizure activity, and wonder if I should mention it to her dr.

Thanks!

[erik]

Not sure how typical it is but I get this way from time to time. Have been almost "catatonic" at worst of times too. I don't know if it's seizure or just "dead tired" fatigue but I wonder about both myself. I've had other things suggestive of seizure/migraine aura too so I keep that in mind but have not been scoped out for such. Benzo's happen to tamp down on seizures so if a benzo like Klonopin is prescribed for POTS, it might happen to help even if there is seizure activity too. The "wearing off" period of a benzo (like a quicker up/down version like Xanax) can be a seizure zone so if things coincided with that it is a subtle clue.

Otherwise I guess real testing (even "provocative" seizure testing) is in order? Many things that make POTS worse and are involved in POTS also increase odds of seizure: dehydration, electrolyte imbalance, hypoglycemic response (reactive/relative hypoglycemia), oxygen deprivation (odd flow regulation), "excitable state" such as sympathetic overstim, sleep deprivation, etc. If not a direct link, there are ample indirect interactions to choose from too.

Despite all that, I think many folks would just say it's an extreme fatigue state... but hard to know. The obvious seizures go general and move muscles, next obvious involve memory loss and such, the most stealthy are just waves of intense emotion or odd "mental state" without any other likely clues. Those latter type are hard to distinguish from painless migraine, too, it seems.

[fc3schick87]

Not sure how typical it is but I get this way from time to time. Have been almost "catatonic" at worst of times too. I don't know if it's seizure or just "dead tired" fatigue but I wonder about both myself. I've had other things suggestive of seizure/migraine aura too so I keep that in mind but have not been scoped out for such. Benzo's happen to tamp down on seizures so if a benzo like Klonopin is prescribed for POTS, it might happen to help even if there is seizure activity too. The "wearing off" period of a benzo (like a quicker up/down version like Xanax) can be a seizure zone so if things coincided with that it is a subtle clue.

Otherwise I guess real testing (even "provocative" seizure testing) is in order? Many things that make POTS worse and are involved in POTS also increase odds of seizure: dehydration, electrolyte imbalance, hypoglycemic response (reactive/relative hypoglycemia), oxygen deprivation (odd flow regulation), "excitable state" such as sympathetic overstim, sleep deprivation, etc. If not a direct link, there are ample indirect interactions to choose from too.

Despite all that, I think many folks would just say it's an extreme fatigue state... but hard to know. The obvious seizures go general and move muscles, next obvious involve memory loss and such, the most stealthy are just waves of intense emotion or odd "mental state" without any other likely clues. Those latter type are hard to distinguish from painless migraine, too, it seems.

medications as stated above i have found to be "bleh" i didnt like them and i didnt take them for very long.

when i am not feeling well i zone out. when your body is doing so much at one time and you can feel things happening inside your body, or at least i do this, i zone out and focus on whats going on inside me not really noticing much outside of me. i also notice my eyes are unable to focus on things. and things tend to glow like i have poor vision. i can not comprehend things i see and i can not make choices or count money or even take phone calls while i am working and this happens. its a sort of confusion that comes and goes with blood pressure crashes. almost like some of the senses are dulled in order for the body to try to repair itself cuz it knows something is wrong.

i once thought i was having seizures and problems. the tests SUCKED. blinking lights, electrodes pasted onto my scalp, cat scans MRI , the feeling of being in that tube!!!! uhg! none of it showed anything because it wasnt happening all the time. even if it was happenign i dont think they could scan for it and capture the activity in my brain. or even they wouldnt know what to look for ....

hope this info helps you.

[TheLivingDead]

i have been like that. i stare off into the distance. its like i just go blank or go on standby. its wierd. once i had it really bad and ended up in the hospital. i felt like a 'vegitable'.

[Noreen]

I get like that too. I feel totally brainless and if I push at this time, I get overwhelming anxiety. I'm also unable to visually focus on written material. I've recently had an EEG which was normal.

You mention she is sitting when this happens. Does it pass sooner if she lies down?

I'd mention it to the doctor at the next appointment.

[lieze]

When I went to the endocrinologist he noted a stare.

This makes me a bit nervous talking about it but he had me look at him.

It was something my eyes or the pupils of my eyes were doing as I fixed on an object.

I have had difficult too with focusing. With feeling comfortable with my vision.

I get a sensation when I'm driving that everything is coming at me and it overwhelms me.

I have been practicing using a focal point to deal with this. I imagine myself pulling myself closer with a rope to that object. As I get there I change to another focal point up ahead otherwise I have a tendency to go into panic mode. I have done this while walking too. Get overwhelmed with visual stimuli. If I focus on one thing I can usually walk towards it no problem. If I see everything before me I can start to feel a bit dizzy and like everything starts to swirl.

lieze

[2drummatt]

Hey all,

I too, stare/gaze into the distance sometimes. I relate to what you are saying...and sometimes its hard to break out of the trance. I get it when I am just sitting or resting, my body sort of goes into repair mode, and my mind goes still. What has helped me with this is keeping my blood sugar up (like frequent snacks) and also keeping the salt intake up. Those seem to help with the stupor-like fog.

[erickamcc0523]

I do this quite a bit. It's almost like I'm so tired when everything is getting ready to crash that I don't even have the energy to focus, either with my vision or my cognitive processes. It feels like the muscles around my eyes are extremely weak and can't physically contract them to focus. I'm dealing with this right now, as it's taken me almost 30 minutes to write those first 3 sentences. UGH... it's so frustrating!

[Aquadiva]

Thank you, you are all so helpful. It sounds like it is a normal POTS thing and that helps ease my mind. But, I will mention it to her dr. It is just kind of freaky for lack of a better word. It just goes to show how truly fatigued people witih POTS are. I just wish everyone could understand. I think I might start using that as an example of "how tired" she really is--that even focussing her eyes is very difficult.

But, she is very determined and we went for a nice 25 minute brisk walk this evening. She knows it is what she needs to do even though she feels so terrible. She realizes if she doesn't follow dr.'s orders, they can't help her get better. She has become the best nutrition label reader and really does well with the extra sodium and fluid intake. For that, I am thankful I have a compliant teen.

Another thing that we just joke about because otherwise we'd cry, is that she mixes up words. I know that is a normal POTS thing. For example, at dinner she said, "Pass the Hy-Vee". For those of you who aren't familiar with Hy-Vee, it is a grocery store. She meant to say the Heinz 57. Although it is very frustrating for her, her friends are very supportive and we try to keep a sense of humor about the whole thing. Like I said, it is either laugh or cry, and we choose to laugh.

[bizbiz]

YES! I dont do it anymore, but when I first got sick I would stare all the time. I was so tired and didnt have the energy to focus my eyes. Pretty much what Ericka said - you just dont have the energy to contract your eye muscles to focus on something, so it is just easier to stare.

I would be having conversations with people and stare, I would watch tv and stare - but like your daughter, I was still aware of everything that was going on around me or being said.

I was quite bad for about 3 or 4 months after getting sick, and then as my fatigue lessened so did the staring. It eventually went away. I've never had it again, even when I have been really tired.

I did wonder at one stage about seizures, but because I was aware of everything and able to hold conversations while doing it, I kind of ruled it out. I cant say if it is the same thing for your daughter, and I guess a new symptom is always worth mentioning to your doctor, but I know in my case I was just so overwhelmingly tired that I just didnt have the energy to even focus my eyes, and the fact that it got better as my fatigue and I did made me realise that it was a fatigue related issue.

[Brye]

Definitley have those moments. For me it's usually when I'm more tired than usual and it just feels like I can't focus very well!

Brye

[erik]

Bit of a "Thousand-yard stare" seems possible too... given that POTS used to be called "Soldier's Heart". This was the mode I was in when I had it my worst. As my life was destroyed slowly before me.

[kerrilyn]

I do that too. I remember first my mother and then later my husband often asking me, 'What are you staring at?' I didn't even realize I was staring, usually looking right past them for some reason or slightly up at the ceiling. Just me 'zoning out', but I was still aware of my surroundings. Huh, I never knew why I did that.

I mix up my words all the time. Sometimes speaking and sometimes when I type. It's frustrating but it's good to have to have a sense of humour about it.

[fc3schick87]

When I went to the endocrinologist he noted a stare.

This makes me a bit nervous talking about it but he had me look at him.

It was something my eyes or the pupils of my eyes were doing as I fixed on an object.

I have had difficult too with focusing. With feeling comfortable with my vision.

I get a sensation when I'm driving that everything is coming at me and it overwhelms me.

I have been practicing using a focal point to deal with this. I imagine myself pulling myself closer with a rope to that object. As I get there I change to another focal point up ahead otherwise I have a tendency to go into panic mode. I have done this while walking too. Get overwhelmed with visual stimuli. If I focus on one thing I can usually walk towards it no problem. If I see everything before me I can start to feel a bit dizzy and like everything starts to swirl.

lieze

my doctors also notice that my pupils do not contract as they should when light is shined into them. kind of an interesting thing to have looked at when you see a new dr, so they can actually see physical proof that your different from every one else. that your body isnt reacting as it should

[janiedelite]

I totally do this. When I'm not feeling well, any interaction hurts even moving my eyes. My husband refers to me during those times as "Goth Wife."

[Maxine]

It does sound like a lot of people here have this related to their POTS, but I often wonder if their POTS is secondary to another neurological disorder.

I had this happen when I was driving once. It was in the evening, and I probably had already pushed myself too far that day. It felt like tunnel vision, and I had a terrible time trying to get myself home. I was getting so overwhelmed by it, and I called my husband on the cell phone. He said my speech was slurring also. I never did find out what this could have been from, but I assume blood flow to my brain wasn't great, and this was the cause. Now that I know I have poor vascular tone from the EDS this makes sense.

Maxine :0)

[Simmy]

It certainly doesn't sound like a seizure to me, especially if she is responding appropriately. We all seem to stare into empty space from time to time. Sometimes I stare from sheer boredom, as there aren't many physical activities I can do anymore. At other times it's from pain, discomfort, or absolute exhaustion, but that's easily identifiable just by looking at my face - my wife can easily tell the difference between the two states.

The only 'state of stare' I'd caution you about is the gloom stare. I sometimes, especially when I'm alone, analyze my predicament too deeply and occasionally become depressed. Keep an eye out for that and encourage her when needed.

To answer your other question, incorrect word usage is absolutely normal with us. I very often struggle to find the word I'm trying to say, regardless of how simple it is or how often I use it. Brain fog.

[lieze]

I have always been a daydreamer, now I feel like I take it to a whole other level and almost have out of body experiences I go so deep into this state.

Often I don't catch myself until I start to come out of it and then I get a tremendous anxiety sometimes even jerk and lose my bearings for a moment as I come to.

lieze

[Noreen]

I ran across this and thought it pertinent.

Brain. 2009 Oct;132(Pt 10):2630-42. Epub 2009 Jul 8.

Symptoms and signs of syncope: a review of the link between physiology and clinical clues.

Wieling W, Thijs RD, van Dijk N, Wilde AA, Benditt DG, van Dijk JG.

Department of Internal Medicine, Academic Medical Centre/University of Amsterdam, Amsterdam, The Netherlands. w.wieling@amc.uva.nl

Detailed history taking is of paramount importance to establish a reliable diagnosis in patients with transient loss of consciousness. In this article the clinical symptoms and signs of the successive phases of a syncopal episode are reviewed. A failure of the systemic circulation to perfuse the brain sufficiently results in a stereotyped progression of neurological symptoms and signs culminating in loss of consciousness; when transient, this is syncope. Prior to loss of consciousness the affected individual tends to exhibit unclear thinking, followed by fixation of the eyes in the midline and a 'frozen' appearance. Narrowing of the field of vision with loss of colour vision ('greying' out) and finally a complete loss of vision (hence 'blacking' out) occurs. Hearing loss may occur following loss of vision. This process may take as little as approximately 7 s in cases of sudden complete circulatory arrest (e.g. abrupt asystole), but in other circumstances it may take longer depending on the rate and depth of cerebral hypoperfusion. Complete loss of consciousness occurs with the 'turning up' of the eyeballs. Profound cerebral hypoperfusion may be accompanied by myoclonic jerks.