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TXPOTS

Waves Of Euphoric Feeling

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I have this very bizarre symptom that comes and goes since acquiring POTS. I have yet to find another person with this symptom, or a physician who can explain this. I have these very brief waves (seconds) of what I would characterize as euphoric feeling or feeling of extreme well being. They come sporadically, out of the blue, but it feels as though for a moment, I have blood properly flowing to my brain. The euphoric feeling is accompanied by a tingling in my sinuses. My head feels full, but lighter at the same time. This is not like an endorphin, running high, and I do not have sinus issues or do recreational drugs or alcohol. It literally feels like a switch goes off for a brief moment and restores my body back to normal functionality. I have been ill with POTS since May 2008 with the worst symptoms starting in March in 2009. In June 2009, I awoke with this euphoric feeling, and I felt wonderful for 2 weeks, until I started feeling awful again. Since that time, I only have this symptoms in waves and certainly not every day. This is a shot in the dark, but has anyone else experienced this?

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Well, I have a somewhat similar overall experience but it stops short of euphoria for me. Like you, these are very brief windows where the body/mind feel "almost normal"! It is like there are 20 revolving spheres, each with a small window in them, and every so often they all align like an Indiana Jones contraption (which of course then self destructs like in the movies :). Unfortunately, I also get intense waves of horrible feeling... "moments of horror/doom" which are perhaps anxiety style symptoms (which POTS can cross over with physiologically & psychologically). These negative experiences are more rare now that I manage my POTS (hydration, salt, fludro, etc.). The positive experiences have remained rare though.

Relative to how lousy one can feel for such extended periods of time the brief breaks are almost like a euphoria, but for me, it is more like a short "relaxed" or peaceful state. I now figure it is a little view of what most other folks experience as a decent part of their "norm". Of course average folks have their troubles and don't feel great all the time either... but I figure they way more balanced on average.

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well that can be a sympton of epilepsy, not 2 weeks long tho, and at the risk of sounding looney tunes, also a moment of awakening.

There are books about spontanious awakenings.

I did actually have one ,but I am a buddhist , and I am very fortunate to have access to a great teacher.,

Mine lasted maybe 5 mintues. Whatever it is-was, I hope it returns to you!

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Erik,

I believe you are right. These are more "waves" of normalcy. This is how I used to feel pre-POTS, but now I consider feeling normal euphoric. I got a chuckle out of your Indiana Jones analogy, but this is certainly a great way to describe these moments when I feel well or even that 2 week period. Like you, I also have absolutely horrid moments with nightmarish adrenaline surges. I hate the panic and doom feeling. Now that I have reconditioned my body, I believe my POTS underlying mechanism must be neurologic or neurohormonal in nature since I am capable of feeling well, even if it is for a fleeting moment.

Pat57,

I would be worried about epilepsy, but I had that one episode that lasted 2 weeks. I certainly feel more relaxed when I get these waves. I have heard that Buddhist meditation can increase parasympathetic tone. We all could practice relaxation and stress relief.

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Yeah. Since the most intense experiences are so brief (for me) I got rather suspicious of some sort of Simple Partial Seizure (as from TLE... temporal lobe epilepsy or similar). The "simple partial" variant is basically invisible and experienced on the inside, sometimes hitting the "limbic system" which means it can be a "wave of intense emotion" usually of a negative nature, but can also be others. It happens to be similar to "aura" too... either aura around seizure or around migraine.

The challenge is that these things don't even always show up on EEG, so I haven't been aggressive in seeking diagnostics. If I did one I'd go with a "provocative" style test because I personally managed to trigger one of these on demand (by setting up a couple conditions that increase a person's seizure vulnerability).

The other thing it is loosely similar to is "mood lability" which is associated with various psychological conditions as well as dysautonomia (the latter makes good sense to me because the body/mind's basic underlying regulation are prone to going out of "spec"). As far as what to do about this, I don't know. For meds, the modern anti-epileptic meds (just coincidentally) happen to also find use as anti-migraine and mood-stabilizers... so the multiple experiential similarities seem to converge in the neurology somewhat. I haven't heard much about these things (carbamazapine, valproic acid, etc.) being used directly for autonomic dysfunction though... except indirectly when folks have bad migraines to try to prevent (which is statistically associated with dysautonomia). I guess Klonopin (which isn't same as those others, but is anti-seizure) is the closest that seems directly prescribed for dysautonomia... though I think typically in a much lower dose than epilepsy or mood disorders.

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I used to get a symptom a kin to a suddent sort of eurphoric experience - not so much a wave of normalness as pre-POTS I was a pretty umemotional guy - but more a sort of laughy wellbeing feeling. It would last maybe 10 seconds or so. Sometimes i got at the point of the day when I would suddenly improve. I got this a lot from licorice for years. Unfortunately now I no longer get this sort of giddy euphoria.

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Yes, TXPOTS, very much so, count me in on this one, sorry about reviving an old thread, but this really strikes a chord. Indeed I've found various physical maneuvers or tricks for fleeting visits to normalcy, because also in my case, as ramkentesh mentions, that's just what this sense of utter relief is, this sensation of euphoria (which only usually comes about when symptoms are lighter).

But maybe I should stand up, emerge from the ranks of lurkers and introduce myself before I go on to my tricks? Standing up is not such a big risk in my case, I don't have POTS, but something a bit similar to that perhaps.

For a couple of years, I've been suffering from brain fog. I've also noticed that the more brain fog, the less aerobic work I'm able to do. But I've never been sure whether this "exercise intolerance" was not just in my head simply because I feel lousy. And yes, I get better with hydration but in the end that's hard to control beyond a natural limit. The simple IV drop is a blessing until your body decides to get rid of the excess volume.

As some others have written about, I too found out that exercise actually didn't make me worse. I just got to take care of hydration well before starting (I OD on OJ). I choose exercises that lessen the symptoms (bench press, leg presses and so on). But when the disorder is really bad I feel I hibernate. I fall asleep during the day because of the brain fog, my heart rate is low, like 25 below normal, but other than that I haven't noticed much amiss. I got curious about pots some time ago and measured a difference of 30 between standing and lying. So I had the tilt table test and the result was also an increase of 30.

But that's normal and good according to the cardiologists. I didn't pursue POTS further. So I felt I shouldn't be writing here at all :unsure: But for what's it's worth here's my take on my own problem, just in the very unlikely event it has anything to do with anybody's POTS problem.

I fancy the sinus connection. This is where my feeling of "euphoria" is, too and that's by absence of pain. I've taken this observation a little further because I always had mild pressure pain in my forehead since this ordeal started. More so, the brain fog and the pressure feeling go together. The more pressure, the more fog. So I went the headache route in my treatment. I've always insisted that at times the condition may go and off several times a day, or rather especially a night. But that was before it became chronic.

As for tricks to achieve sudden lessening of symptoms, there are several in my case.

There's increasing intracranial pressure really, really dramatically. I do so by touching the bottom of the municipal pool, the deep end (when it's filled with water obviously). That eliminates the pressure pain completely, utterly and 100%. Pressure comes back as I get back to the surface. This diving maneuver creates three or four meters of H20 pressure in the brain working against the air in the sinuses below. The bones in this region are very thin and on the brain side they surround the ethmoidal nerves, but I'm getting ahead of myself. In any case this isn't a practical way to deal with the pain.

Another trick I use is that I just lean the neck back, tighten lower and upper back muscles, and breathe at the same time, but that's not practical either. And, that usually doesn't give total relief.

What gives total relief on land for my "sinus" pain is to compress my mid-face. One way I do that is by using a wooden plank vertically. One end goes on the floor, the other end I place under my upper teeth. Then I force my head down on the board, probably with some twenty pounds of force. No, it doesn't hurt, at least to begin with, we're built to withstand this kind of pressure for a short time. This is not a very practical solution either. My brain fog improves dramatically for the few minutes I can stand this.

Back to the nerves. I don't want to sound overly nerdy, but here's what I found. Compression of the trigeminal nerve is known to cause autonomic symptoms, specifically via a vagal reflex to the heart. This phenomenon is called the oculocardiac reflex or more generally the trigeminocardiac reflex. The trigeminal nerve also sends fibers to major vessels of the brain in order to participate in bloodflow regulation. People with facial pain have been shown to have altered blood flow in the fronto-temporal region of the brain. And then there's all the stuff they don't know about :( In any case, this satisfies me as an explanation of my symptoms. And that my misery comes from the trigeminal nerve is something I'm pretty sure about. I've had a variety of nerve blocks done, some give the "euphoria" feeling (pain relief, feeling of return to normalcy, more or less), some don't depending on which branch the lidocaine or something-caine goes to.

So my case is neurological. Or rather, I believe it is not. It's much simpler than that. Why? Because I can momentarily revert to normality (try to explain that to most doctors and see rolling eyes :rolleyes:). All systems are working as they should. The problem is exactly what that little sinus pressure tells me: something is under pressure in the sinus region, just like any other pressure pain in the rest of the body tells me that something is under pressure there. Why must the head be different when the pressure happens to act up there?

More to the point perhaps, my multiple year long pain bouts have been preceded by septum surgery or wisdom teeth removal several months before. I think that some subtle changes have slowly emerged from these traumas, explaining why the pain and brain fog developed intermittently over months before I became disabled. And, I bet that it's unknown whether such surgeries do cause bone remodeling that would move things a millimeter or two, propagating forces and changes across the deep face, plenty enough to compress a nerve somewhere for the unlucky few. So that's my current thinking, it's all just reflexes to a very localized little problem (my neurologist has helped me greatly in coming to this understanding, but some of this is free thinking of course).

That's where my case stands. I should mention that I found one drug that's useful among some twenty-odd ones I've tried (that's pseudoephedrin). I didn't go on any hydration drugs because of concern about side-effects and also because I've found the effect of hydration to be rather short-lived in general.

Sorry about being a little long-winded, this all is inspired by that ticklish feeling in the sinuses when symptoms so dramatically reverse themselves for seconds or minutes or hours or days as some of you seem to know but for different reasons! I gather POTS is not very much associated with headache so my case for writing here is indeed a bit weak.

FB

Edited by corina
removed quoting

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hi foggybrain, just to let you know that i've edited your post and deleted the quoting. you can post by scrolling down and use the (dark blue colored) "Add reply" button on the right side. quoting takes up a lot of banwidth and makes reading more difficult. mentioning the name of the person you want to reply to (like you did!) is enough. no worries, we realize you're new, this is just to help you use the forum!

take care,

corina :)

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Foggybrain, glad you began posting. We love to hear theories and ideas here!

I did have two teeth pulled within a year or two of my POTS beginning. They were next to each other, side teeth used for chewing meat,etc. I feel my jaw/facial alignment has been off-balance for years. So, I have no idea if what you theorize is something for me to think about. Of course, I will NEVER be able to find a doctor to address that issue!

Do you know of any way for us to half-way check this out with our sinuses besides being in a pool?

Thinking of sinuses, does anyone here get a sort of "phantom" smell? If my nose is somewhat runny from eating spicy food, if I use my hand to rub my nose, then I smell flowers. It is nothing to do with my hands, because I don't use lotion or anything on my hands. I have had this going on for probably a year, but have never mentioned it to a doctor--I'm already weird enough.

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can totally relate to those episodes!!! when I get them I always think..so this is what I used to feel like all the time!! then the fog sets in again :(

Bren

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I also get these episodes, much like Erik's description. I have always ascribed them to brief periods of adequate cerebral perfusion. I also have this feeling like I want to shake everyone around me and ask them if this is what it feels like to be normal, why aren't they dancing in the street or something? However, I do realize we all have our own problems...

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I do have waves of euphoria but it is for only moments at a time. I sometimes have them before a migraine headache starts & also before or during a partial seizure. It is such a great feeling but I know something bad is about to happen. I also get phantom smells. I usually notice the phantom smell such as smoke when I wake during the night. It is so real I get up & check everything for fire & also wake DH to verify that there is not a fire.

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Thanks for following up, guys.

Sue1234: you ask whether something less drastic than seeking the depths of the pool would show something? Speaking for myself, just leaning the neck back helps me, especially if I at the same time tighten my back muscles.

Here's more detail. My combined "normalcy maneuver" could be something like: (1) slouch in chair, sliding behind forward (2) make spine concave by pushing belly up, (3) look at ceiling behind me and by tilting neck all the way back (4) relax other muscles and keep breathing and hold this position for say a minute. When I do this, the sick feeling in my head largely disappears (perhaps totally if symptoms were light to start with). I experience normalcy, kind of, for a minute! But the sick-in-head feeling returns quickly after I stop as if something is slowly tightening somewhere in my forehead.

Same thing happens when I do the compression of mid-face trick I mentioned in previous post.

Actually, what's going on for the leaning-head-back or leaning-head-forward situations, in terms of spinal sac volume changes, is shown very neatly around 30 min into

. That is of course the very video you found for us in thread on cervical stenosis! When you lean your head backwards the spinal sac is squeezed. Tightening the back muscles squeezes it even further. As a result the pressure in the brain increases because the fluid in the brain and surrounding the spinal are part of the same system.

As the video also shows nicely I think is that the volume of the spinal chord is increased when leaning forward. That would decrease the pressure surrounding the brain. And so although I used to believe that my pain gets worse in that situation because the brain moves forward and stretches something, I don't think that has anything to do with it. Rather I now believe that the lesser pressure affects the ethmoid sinus area in a bad way. But I'm again speaking about my own strange experience only, where the cervical stenosis is good, not bad.

You also ask about phantom smells. Perhaps you know this already, it's actually a legitimate symptom, at least it has a Greek sounding name: dysosmia.

To pat57: Yes indeed, it could be something that points to epilepsy. So I was tested for that while being hospitalized. But that was negative although my EEG did come out abnormal. As for migraines, I don't believe I've ever had one! This feeling of sudden well-being is not a prodrome in any case, just a mysterious short remission, as it were.

For those wondering: this speculation would be POTS related if some cases of POTS are caused by autonomic dysfunction thanks to cranial nerve compression or other cranial nerve issues. If anybody has any references to such connections, I'd love to see them.

FB

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