Anyone Else Have Quirky Symptoms Or Traits?

[ajw4790]

Hi,

I have been wondering how many of us have quirky things about us that 1.) Either we never knew anything different than our quirkiness and later found out that not everyone is like that, and dysautonomia is to blame. 2.) Have known you have quirky traits, but have no real explanation. (drs. could never explain it ) But, that these traits could be related to medical conditions.

Not all the symptoms that we, as people with dysautonomia, have are listed on an info sheet for dysautonomia. Many drs. may not even fully acknowledge these symptoms, but because so many others with the same diagnosis have similiar symptoms it is often hard to ignore them.

I thought it would be interesting to discuss any of these quirky symptoms that either you have learned are related to dysautonomia or have wondered if anyone else has the same symptoms/reactions....

For example: This is probably most applicable to those who have had dysautonomia symptoms the majority of their life...

I have been curious if anyone else has always had a problem with the motor function of the muscles in their face???

I have never been very good at all at smiling, sticking tongue out, doing things with my eyes, etc... on command. It seems like both the proprioception of where my face is in space is off, along with the signal between my brain and face seems slow, and like it needs help. When I was younger I could not do some of these things without a mirror (needed visual feedback). It is like the coordination of movements did not come easy to me. I also had serious difficulty swallowing pills. I was probably at least 16 y/o before I could get the movements coordinated enough, AND not set off my overly active gag reflex.

I also tend to be uncoordinated and clumsy, especially with orchestrated movements. (i.e. I don't mimic dances, hand gestures, tasks at work or school very well).

Does anyone else have a similiar experience???

Anyone else have a quirky trait you have lived with, "just" to find out it was due to dysautonomia???

[ana_22]

i always thought the lights were dimming in and out meant therre was a problem with the electricity in the house or the wiring.

until i realised i was the only one seeing the dimming in and out.

[MelissaCrystal]

I'm the same exact way, facial muscles and coordination! I have no clue if it's related but I have so many issues that I wouldn't be surprised.

[delphicdragon]

I was definitely using coping mechanisms for my dyautonomia before I knew that I had it. For instance, I always sat with my feet up - got yelled at numerous times for doing this at the dinner table- but I instinctively knew that feet up (usually on the crossbars of the table) meant less blood pooling).

Also always sat cross-legged on a chair.

If I had to wait in line, I would instinctively squat down to look at stuff on the bottom shelf or to "tie" a shoe. Never knew why (until my diagnosis) but I just did it. I was coping without even realizing it.

Also, always ate small meals every 90 mins. I apparently I've done this ever since I was born.

I still can not swallow pills unless they are teensy and can't mimic a darn thing.

Strange eh?

Sara

[sue1234]

I started with my POTS almost 4 years ago. The thing that definitely came along with it are(beyond the usual s/s): intolerance to light(never wore sunglasses my whole life, now can't see outside without them), extreme heat intolerance, and one of the strangest things--I get real nervous when I have to get into a conversation with people, EVEN MY PARENTS! I used to be in community organizations, blah, blah, and had the usual "stage fright" if I had to speak in front of groups of people, but now, I pretty much don't go out to visit people, even family. When I have to talk for a few minutes, my body clinches, my heartrate goes up, and feel soooo lightheaded. This is not what I was like for 45 years, so it really confuses me.

[bjt22]

Definite coordination problems. Problems with both gross and fine motor skills. Noticed this a lot with my own kids, too. Only thing that finally clicked for me was just a month or so ago, I was watching my son open a can of soda. He appeared to be having difficulty...the kind of difficulty that I often have doing such things requiring fine motor skills. When I watched closely, I saw that his long skinny fingers, so much like mine, were so hypermobile that they were bending backwards everytime he applied pressure to the tab, therefore he couldn't get good leverage. It was a "light bulb" moment...he's in 10th grade now, but he's had serious problems with writing his entire life. I now have a better understanding of his plight as well as my own.

Ofcourse, I'm the person who grew up believing that everyone had "spells" on a regular basis. I had "gray outs" my entire life. Can't ever remember not having them. Always had them at least a few times a week, and often a few times a day. Again, thought everyone did this. I've always been quite heat intolerant, and I now understand this. Never could lay out and tan with the other girls. My parents realized this about me, too...and from the time I was a small child, I had a window air conditioning unit in my bedroom.

I also had what most considered my bizarre showering ritual in the morning. I had to be at school by 8:15, so I would get up in the morning at around 5:00, take my shower, and lay down on the bathroom floor for about an hour or more before getting up and completing my preparations for the day. I would even bring my pillow and a blanket into the bathroom with me so I could do this. Now I know why, but then...everyone just thought this was a weird quirk that I had.

[shadesofgrey49]

I was definitely using coping mechanisms for my dyautonomia before I knew that I had it. For instance, I always sat with my feet up - got yelled at numerous times for doing this at the dinner table- but I instinctively knew that feet up (usually on the crossbars of the table) meant less blood pooling).

Also always sat cross-legged on a chair.

If I had to wait in line, I would instinctively squat down to look at stuff on the bottom shelf or to "tie" a shoe. Never knew why (until my diagnosis) but I just did it. I was coping without even realizing it.

For years, I've sat at the dinner table with my knees up against the table, or cross legged. I much prefer eating on a couch. I've never felt comfortable at a table unless it's some sort of climate controlled environment, and even then, I need to lie down soon after the meal is finished.

Ditto to waiting in line. I was the kid who sat down in the middle of a store, and my mom would yell at me for sitting on the dirty floor.

Ofcourse, I'm the person who grew up believing that everyone had "spells" on a regular basis. I had "gray outs" my entire life. Can't ever remember not having them. Always had them at least a few times a week, and often a few times a day. Again, thought everyone did this. I've always been quite heat intolerant, and I now understand this. Never could lay out and tan with the other girls. My parents realized this about me, too...and from the time I was a small child, I had a window air conditioning unit in my bedroom.

I also had what most considered my bizarre showering ritual in the morning. I had to be at school by 8:15, so I would get up in the morning at around 5:00, take my shower, and lay down on the bathroom floor for about an hour or more before getting up and completing my preparations for the day. I would even bring my pillow and a blanket into the bathroom with me so I could do this. Now I know why, but then...everyone just thought this was a weird quirk that I had.

I also thought "gray outs" were normal. And I've had similar shower rituals the past few years. I often sit down for a long period of time in the shower, or lie down in the bathtub until I can stand again. Then sometimes I'll lie down in the bedroom in a towel.

[erik]

I considered it quirky that for years I was adamant about sleeping in my lazee-boy... not knowing why but knowing firmly that I felt "magically" somewhat better doing so. Beyond that, I suffered a weird anxiety sleeping in my bed. I wondered if I had one of those psychological things where you "need" to have the TV on or something (my lazee-boy was in front of the TV as many are).

Turns out in POTS sleeping with head elevated is recommended as it can help with some things. Within the POTS world I think I have a quirky case in that I get more frequent "sudden momentary panic/agony" rushes when sleeping flat. I figure my heart rate or BP might be dropping too low (I do have measured bradycardia) and my body issues a panic order to counter it (like can happen with apnea... or perhaps I have a bit of central apnea thrown in). I think the elevated head is typically supposed to help in a rather indirect way (blood volume or something)... but for me it seems to have more immediate benefit.

[erik]

Oh yeah... like others mention, I also had grey-outs and chronic lightheadedness for so many years (since a kid). I wondered how everyone else just did their thing and never seemed bothered by this stuff... I figured I was a wimp in this regard or something. I didn't realize other people DON'T have to deal with this stuff all the time.

Another bizarre thing is my difficulty reading. I don't know if it's POTS, head injury, psychosomatic or whatever. I have to pause frequently to rest (mental fatigue), I get overwhelming emotional feelings, eventually my eyes will begin to jitter, and generally I have a weird phobia about reading though I try every now and then over the years to see if I am magically cured. Just completed my first book in 20 years (since dropping from college)... reading a book was a personally traumatic experience (internally, not like a real life trauma or anything) but I did it. I can absorb things in other ways, just not traditional reading. I don't know how much is attributable to POTS, like blood flow problem, how much was from head injury, how much might be some learning disability predating POTS (I had difficulty & headaches from reading as a child, but was put in a speedreading course as a response for some reason). I wouldn't be surprised if some of it has to do directly with POTS issues... especially because I managed to make it through that book by keeping the A/C blasting, overhydrating, etc.

[mkoven]

I've recently learned that many of my weird neuro symptoms are from brainstem compression-- a combo of chiari, cranial-cervical instability, and tethered cord. Amy, you have eds , right? Apparently this is a relatively frequent combo. My intermittent facial numbness, weakness, tongue numbness, dysphagia are from this. Those are all functions controlled by cranial nerves, that can get stretched/squeezed.

[Mrs. Burschman]

I've always been very sensitive to perfume. I can't wear it. It gives me an instantaneous headache, even on someone else.

Amy