90% Of The Time Dealing With Disconnection Feelings

[lissy]

Most of the time I feel just out of it if I really pay attention, most of the time I try to stay busy because it sends me into panicky feeling is this pretty common with anyone?

Lissy

[erik]

If you mean a "spacey" sort of disconnection feeling, kind of half-there half-conscious half-real... then count me in. I'm not certain of the cause... I have a few angles on it for my case. Is that the sort of thing you mean?

[Tachy Phlegming]

There is a very important (philosophical) question I have regarding the topic in this thread.

When I feel this way, I say that I don't feel like myself. After seeing what people write on this board, I have started to wonder whether other people feel like me. So that would first entail that other people also don't feel like themselves. Now, the very deep question is of course, when we don't feel like ourselves, who feels like whom? So for example, when I don't feel like myself, do I actually feel the way Erik feels when he does feel like himself?

And what I really want to know of course, is who is feeling like me when I don't feel like myself. (So if it's someone on this forum, please tell me!)

On a more serious note, in my case, when I have this sensation, I always have phlegm stuck in my chest (and I don't feel that I have the phlegm so knowing that this was what caused the sensation took me forever). However, when I can cough up that (usually only one) plug of phlegm, the sensation goes away within minutes. If I had a lot of exposure to whatever made me sick, it would probably be harder to get rid of the problem (but at my worst, I had no idea that coughing up this phlegm would help so I don't know if I could get rid of the problem if I were really at my sickest).

And of course, I wouldn't know certainly if what gets me to cough is also what gets rid of the feeling or whether it is the phlegm itself which is what prevents me from feeling like myself (but it feels like the latter because I have to cough before the feeling goes away).

[Maxine]

I think my Wellbutrin makes me feel that way sometimes. Sometimes it's hard for my to cry, like my emotions are somehow blunted.

Maxine :0)

[ramakentesh]

In most cases its a simple matter of there being reduced blood flow or velocity to the brain as a result of gravity and your body either over constricting the arteries to your brain, your veins pooling inappropriately or your autonomic nervous system not regulating blood flow in your brain properly.

The main other illness where sympathetic overactivity is a problem is hyperthyroidism - patients experienced altered 'mentation' that is caused purely by sympathetic overactivity and results in 'excitability', 'confused and racing thoughts' and symptoms quite similar to some of my POTS symptoms.

WHen I felt this way I had a doctor to a carotid artery ultra sound and I had a 44% reduction in carotid blood flow.

There is an answer!! If its reduced blood flow you can do something fairly simple to rapidly improve it. Eat some licorice candy with maybe 3-5% actual licorice extract. For me it makes the WORLD of difference. It gives you a minor increase in blood pressure and seems to allow you retain a little more liquid than normal. I usually eat it, feel very little, then get thirsty, drink a lot and then feel much clearer and sharper.

Ive tried stimulants for this problem but they dont really help in my case because part of the problem and cause is that I am perpetually overstimulated while dizzy at the same time.

[potsgirl]

Maxine,

I take Paxil, and I have a hard time with emotions and feeling disconnected, too. I have a really difficult time crying, and sometimes, I need a good cry!

[lissy]

Sorry my post was so short lastnight I wasn't feeling well enough to get into detail. When I 1st started having these symptoms and actually went to a psychiatrist and explained how I felt he DX me with generalized anxiety disorder and dissociation disorder and of coarse depression. I told the doc its like looking at my hands I know they are my hands but they don't really seem like I'm real its like my life is a movie like a not reality feeling...I don't have a personality disorder I'm not schizophrenic or anything like that its such a weird feeling . If anyone has used marijuana its it feels similar to being high all the time along with all the physical symptoms . It is a scary feeling when I focus on it and I try not to. Like I'm losing my mind. I guess sometimes you can get so caught up into looking into your illness it can make you lose your mind , I don't know maybe something else is wrong I just wanted to know if someone else felt this way its hard to explain it to someone that is healthy and I really don't want to talk much about it because it sounds so crazy, and I know I'm not insane.

Lissy

Ram I will try the licorice candy hope it helps even if a\little

Also I'm not speaking of I don't feel myself as in ( my healthy self) Even if I was just sick I'd feel myself this is a different feeling .

[HopeSprings]

Yes this is ME every single day. It is my worst symptom. What you are describing is called depersonalization. There are times when I am feeling particularly "POTSY" where it feels like I cannot feel my body... not literally numb, but just sort of not all there. I will shake my hands out or rub my legs to try and feel again. It IS hard to describe. I also have derealization, which makes my surroundings look/feel kind of surreal and dreamy. I think Ram is right and it has something to do with blood flow to the brain. Most of the time if I lay down it helps -- assuming because blood is going to the brain? I also have an inner ear disorder, which I am still working with a Dr. to try and uncover exactly what is wrong there, which can also make you feel weird in the head. Have any ear problems that you know of? I am starting to wonder if there is an overlap between vestibular and autonomic causes for all these symptoms, including the POTS ones.

[Maisie87]

lissy,

I'm so glad you posted this! I was just trying to explain last night to my brother that I feel like I'm watching my life from a bird's eye view. It is scary for me too. I don't really know why it happens- perhaps it's a side effect of lexapro- perhaps it's because I'm isolated 8 hours out of the day by myself (solitary confinement!!) until my mom gets home from work.. I don't know. Just know you aren't alone.

It's daily for me too

feel better

Maisie

[lissy]

Thanks all for responds.

Naomi-----were you DX with those disorders and if so were they before POTS DX? If so what did they say to do about it?

Maisie-----I am also isolated pretty much all day besides with my children ages 3 and 2 but I don't have much conversation with adults I think it makes me feel worse.

I am so glad in a way I'm not alone it is the most embarrassing symptom I have and I don't talk about it often but when I went to Clev.Clinic I told the doc I felt disoriented and detached from surroundings and she wasn't shocked or anything so I guess its normal, I'll find out more when I go back next month.

I have noticed its does get worse if I go outside in the brightness or if I'm standing very long or tooo tired but its there all the time.

Lissy

[lissy]

lissy,

I'm so glad you posted this! I was just trying to explain last night to my brother that I feel like I'm watching my life from a bird's eye view. It is scary for me too. I don't really know why it happens- perhaps it's a side effect of lexapro- perhaps it's because I'm isolated 8 hours out of the day by myself (solitary confinement!!) until my mom gets home from work.. I don't know. Just know you aren't alone.

It's daily for me too

feel better

Maisie

When I was DX with those conditions I was on Lexapro also and it made me less physically limited at that time I didn't know I had POTS but It made me not care about anything and I was kinda SILLY everything was Hilarius to me, I felt so good emotionally I went up to max dose and then it didn't work any more so I went off of it.

[pat57]

I have felt like that too, I'm sure now its was low bp. My disclaimer is - that doesn't mean its what is causeing it for you.

good luck!

[erik]

Now, the very deep question is of course, when we don't feel like ourselves, who feels like whom? So for example, when I don't feel like myself, do I actually feel the way Erik feels when he does feel like himself?

.........

And of course, I wouldn't know certainly if what gets me to cough is also what gets rid of the feeling or whether it is the phlegm itself which is what prevents me from feeling like myself (but it feels like the latter because I have to cough before the feeling goes away).

Tachy, if you are the one who feels like me when I am not myself, then I think I must offer my sincerest apology to you... This sort of transcengenderdentalism could result in any assortment of miscreant feelings... or perhaps erratic impulse shopping behavior. You have not, by chance, been mysteriously downloading 80's tunes such as "I Ran" by A Flock of Seagulls or "Alone Again" by Dokken... or perhaps caught yourself at the checkout line about to purchase the latest Maxim and/or motorcycle magazine??? If so, please forgive me.

The Tach-ster's technique and the resultant causal quandary reminds me of a great work by famous American author Marko Tween. It was titled "Huckaloogie Finn"... the favorite of many boys and more than a few ladies too (I carry a handkerchief due to this and my tendency to sometimes choose my words unwisely). Anywho, the protagonist's ongoing effort to resolve his "identity crises" (a term coincidentally coined by Erik Erikson) was illuminated allegorically via his struggle to determine if his profound "fulfillment of self" came from his characteristic expectorate release itself or from the inner impulse and freedom to do it. It is indeed a classic... and a profound philosophical point unlikely to be resolved in our lifetimes.

I think the underfed brain angle is sound... particularly if addressing it brings relief. I've not had scientific carotid ultrasound measure... but if one makes examination of much of my life one is likely to conclude that perhaps "that boy's brain ain't gettin' 'nuf oxeegen". There are other more minute things that could be at play... anything from electrolyte imbalances, reactive hypoglycemia (said to be more common in POTS), neurotransmitter adjustments as response to physiological aspects of the condition (or tied to it's cause or presentation)... to the interplay between chronic situationally inappropriate stimulation of a "fight of flight" response and the related memory & behavioral responses in the brain (confusing imprints of threat & other emotions).

To withstand the onslaught of inappropriate sensations, one kind of has to detach from oneself. Derealization/depersonalization can relate to "trauma processing" as well, which can be an aspect of the illness (and it's debilitation), can relate to circumstances of its cause, or might allude to an existing sensitivity exacerbated by these things (such as if one has earlier trauma & dissociation/protective response history). I agree, isolation tends to feed it too. Actual isolation... as well as virtual isolation since few others are likely to relate well to the condition (even if they are sympathetic).

Ironically, for me my strongest moments of relief from the detached feelings are when I am on the verge of passing out from low BP and I get a "bell ringing sensation like in a cartoon", and during one of my few panic or "moment of doom" sensations. Unfortunately one is intensely unpleasant and frightening, while the other is far far worse.

At the end of it all... one might just become an adrenaline junkie of sorts, due to frequent inappropriate catecholamine & related responses. Then by contrast, other experiences are unfulfilling at that low level.

It would be nice to have some acknowledgment of this symptom in official POTS descriptions. I think it is quite common and understandable to be timid with aspects that interact with the psychological realm, and having "official" recognition could at least be comforting if not informative for diagnosis.

[Guest tearose]

Well dear family, another "healthy observation" could be that when in this state one is actually very meditative and is letting go of self and ego and allowing for "other". Healing can come from this state as long as it is not Oxygen deprivation but rather moving out of self.

It is not recommended to do things like drive or operate heavy machinery in this state but there are some gurus and buddhas who spent entire lifetimes trying to achieve this disconnected state!!!

Just another viewpoint...

tearose

[Tachy Phlegming]

As I experience this odd sensation, the phenomenon in fact would appear to transcend gender and only require that we be on the same wavelength -- (as accords with the very precise definition of "transcengenderdentalism"). As such, I wouldn't end up with exactly those masculine parts of anyone's essence even if it were a man. And my behavior isn't really affected except that I complain about the sensation.

-----

When I have kept most symptoms at bay for a long time, I nonetheless inevitably get the feeling 2-3 hours before it rains (whether I know the weather forecast or not) -- and a certain number of hours in advance of the monthly event. With my recent new treatments, I have just stepped up dosages without thinking about it and have had the pleasure of not feeling this way before these two types of events for the first time in many years.

[avidita]

My otoneurologist gave me a written test about such symptoms yesterday. She explained that those are very common with vestibular disorders, but also with anxiety. I know I have anxiety in addition to my medical issues (it's only natural when your body refuses to work properly) and no particular vestibular disorder so my sensations are caused by it. Yours might be, too. I do have POTS, but I think a lot of my symptoms are also caused and/or made worse by my anxiety. Sometimes it's hard to differentiate, but one shouldn't just file everything that goes wrong under POTS. Anxiety is very common in dysautonomia patients and addressing it is important and beneficial. I would look into that if I were you, because the questionnaire was a real eye opener for me b/c it described a lot of my disconnected/in a dream feeling perfectly.

Hope that helps,

M.

[HopeSprings]

I still maintain that these sensations come from either an inner ear (vestibular) problem or lack of blood flow to the brain (oxygen issue) from the POTS. I wouldn't attribute them to anything metaphysical, spiritual or psychological. I cannot speak for anyone else, but for ME these are physical symptoms that unfortunately are categorized as a psychological problem. Before I had POTS I got the same feelings after getting off an airplane -- it would last about an hour after landing and then go away. Now I am stuck with them to varying degrees 24/7. DP/DR are known side effects (and or withdrawal symptoms) of SSRI's, as well as benzodiazepines. It could well be side effects for those of you on those types of medications.

[Potsie007]

Most of the time I feel just out of it if I really pay attention, most of the time I try to stay busy because it sends me into panicky feeling is this pretty common with anyone?

Lissy

I also get this sensation as if I am detached, yet it feels scary as if I am going to pass out. In the first 2-3 months of having POTS, I had this feeling, but I felt like I was dying...like I was actually leaving my body. It was horrifying. I've been doing better for the last 2 months, but when I get this disconnected/detached feeling, it seems to now happen when I've been lying down already (however, the head of my bed is elevated close to 45 degrees) and mostly in the evenings/night time...or sometimes while sitting down.

This thread indeed has brought comfort to me as well, because my family and doctors look at me as if I have 3 heads when I speak about it. Thank you all!

[erik]

I've got 3 things I can choose from as provoking this for me... couple bad things as a kid, a head injury & O.I. First item was marked by sudden & severe episodes and probably subsequent tendency (habituation). Second item led to months of pervasive "feeling like a ghost" which raised the prior memories (an associative memory of the "state of mind" itself, not a matching situation). OI is probably there exacerbating it periodically as well, and of course bringing lesser things like simple lightheadedness, dizzyness, et. al.

Anxiety has always been the clearest provoker for me, and is said to do so for most folks. If the experience itself brings you anxiety it can spiral... just like panic attack can be increased by worrying about it. As others have recommended, doing your best to not let it get to you is an important technique to master.

There isn't said to be an easy fix for this. Some mention of ProVigil helping some folks caught my eye a while back and in taking NuVigil recently, it did seem to give me a hint of relief in this regard. If you are one of the folks who are masking a pain, relief of this symptom can be a mixed blessing and might merit caution (some extra fortitude & tidying one's psychic scars somehow is probably wise). It seems some make claims that LDN (low dose naltrexone/naltrexalone) can help too. In general, I guess they say one goes after the source(s) to find relief, though.

If psychological categorization is an issue, one might press for something like the "from medical source" or "NOS" (not otherwise specified) categories in the DSM to avoid the personality disorder realm. I think there is a "dissociative disorder NOS" existing... not sure about a "medical source" other than drug intoxication and such... dissociative drugs like PCP, ketamine are the more reliable inducers as well as psychedelics & perhaps cannabis less often. I've not heard of inducing it through simple lack of oxygen in general... perhaps chronic cases?? It would get blurred with lightheadness and syncope... which make a dissociated feeling seem at home. It is when it's separate from those that it is freaky... harmless, but freaky.

I'll never personally be able to separate psychogenic, physiological & spiritual/philosophical components. I also find it hard to ignore the apparent similarity between the physiological aspects of POTS and those of stress & trauma... some of the low level body reactions seem to overlap and I find this informative. The body can be bizzare. For example, they say ADH (antidiuretic hormone/vasopressin) which tells kidneys to retain water, is also involved in memory formation of various sorts. Go figure. Still, defining a "state of consciousness" is inherently challenging and few embark on that (noetics being some, though I find them a bit sketchy for my own personal reasons .

[Tachy Phlegming]

Knowing you have dysautonomia, those of you who think this is something other than physical may very well need to have your heads examined -- with one caveat -- if you only have orthostatic symptoms, be sure not to lie on your therapist's couch because you might not have anything to talk about.

I am so inspired by a few pseudointellectual comments here that I am posting a link to a concept in physics which I am sure will advance your interdisciplinary understanding of this topic.

http://en.wikipedia.org/wiki/Quantum_entanglement

Enjoy!

[avidita]

Knowing you have dysautonomia, those of you who think this is something other than physical may very well need to have your heads examined -- with one caveat -- if you only have orthostatic symptoms, be sure not to lie on your therapist's couch because you might not have anything to talk about.

I am so inspired by a few pseudointellectual comments here that I am posting a link to a concept in physics which I am sure will advance your interdisciplinary understanding of this topic.

http://en.wikipedia.org/wiki/Quantum_entanglement

Enjoy!

I actually competed in Physics Olympics in HS in Eastern Europe (read college level physics at the US level) and then took advanced Physics classes for fun in college in the US. So this is quite amusing

Since I am of the persuasion that dysautonomia is not a vaccine against anxiety and its physical manifestations, I want to take issue with having to have my head examined . The same way that all my relatives right now are wrong about having all my symptoms come from anxiety and pretty much ignoring my POTS diagnosis as "nothing to worry about" or "nothing that my possibly cause the symptoms I am experiencing", the opposite is also true. Dysautonomia does not make one immune from anxiety. I could be wrong. I will be interested to hear how exactly does POTS make anxiety absolutely impossible for me, then maybe I will have more arguing points against my family . I don't think Xanax and Atarax- like pills are supposed to make one functional all on their own in a bad POTS flareup the way the are doing for me. My pseudointellectiual comment referred to my particular situation btw and I am not saying it applies to other people, just food for thought.

Thnx.

[ramakentesh]

Anxiety is very common in dysautonomia patients and addressing it is important and beneficial.

The anxiety in POTS is completely mediated by the overactivity of the sympathetic nervous system. So councilling isnt going to make your sympathetic system any less over-reactive to orthostatic challenge.

When there is disregulation of the circulatory system and blood stops running to the brain as it should, the body uses plasma release of epinephrine and norepinephrine to attempt to reregulate it - it happens in hypotensive shock as well. problem is that the brain sometimes misinterprets this increase as a reason to be anxious or afraid.

In GAD and panic disorder there is increased levels and turnover of serotonin in the brain - quite different from what occurs when a POTS patient gets anxious.

I always get concerned when patients report what is often what their doctors have informed them about their anxiety being a separate issue to dysautonomia or POTS. the anxiety in this case (POTS) correlates with increased postural epinephrine release and sympathetic overactivity in the same it is mediated in hyperthyroidism - and no one claims they have related anxiety disorders.

There are other more minute things that could be at play... anything from electrolyte imbalances, reactive hypoglycemia (said to be more common in POTS), neurotransmitter adjustments as response to physiological aspects of the condition (or tied to it's cause or presentation)... to the interplay between chronic situationally inappropriate stimulation of a "fight of flight" response and the related memory & behavioral responses in the brain (confusing imprints of threat & other emotions).

I agree with the last point, but really reduced blood perfusion of the brain accounts for most of POTS symptoms quite nicely - ask the experts - MAYO, Vandy and NYMC all say it in various research papers. Reduced blood flow, reduced oxygen = dizziness, presyncope and all sorts of other abnormalities. it does not explain my visual snow however which is present 24/7 - which I assume is the result of excessive ion channel activity since I am also hypersensitive to light and migraine every chance my brain gets...

[ramakentesh]

double post - i blame the hand tremors...LOL

[avidita]

Anxiety is very common in dysautonomia patients and addressing it is important and beneficial.

The anxiety in POTS is completely mediated by the overactivity of the sympathetic nervous system. So councilling isnt going to make your sympathetic system any less over-reactive to orthostatic challenge.

Actually, here is an article that discusses the POTS/anxiety relationship very well.

http://circ.ahajournals.org/cgi/content/fu...2814#TBL1189801

Yes, the sympathetic nervous system causes PHYSICAL anxiety symptoms (increased heart rate, sweaty palms, etc. ), so POTS patients rank higher than the general population in anxiety tests that ask for physical symptoms. However, POTS patients rank lower than the general population on anxiety tests that evaluate MENTAL anxiety. I, for example, scored twice the mean for the general population in my anxiety score, so yeah, I'm pretty sure I have it Knowing that I have it, means that it may be causing some physical symptoms or at the very least worsening the ones I already have from POTS. Not that it's going to decrease my overactivity to orthostatic challenge, but when I'm calmer and/or on Xanax (for example) I still get the same HR spike when I do stuff, but I am FAR LESS symptomatic.

[ramakentesh]

The fact that you are far less symptomatic on XANAX would suggest that your anxiety is sympathetically mediated.