List Your Abnormal Symptoms

[ramakentesh]

Just out of interest, I think most of us suffere a list of bizarre symptoms that go along with POTS but that arent - for a variety of reasons - mentioned in any of the literature.

What I mean here is that because the basic underlying problems of orthostatic intolerance in POTS are explanable, literature seems to concentrate on those aspects without really wanting to touch the side of things that are not explainable.

Therefore, it thought it might be helpful to address the full symptomatic presentation of POTS - explainable or otherwise.

Please list your symptoms if you dont mind:

Ill start it off:

-Periods where eyes are full of vitreous floaters

-visual snow (even lying down when i wake up in the morning)

-pooling in head region when i lean forward

-mornings where i wake feeling like I have the flu

-visual tracking and accommodation difficulties

-increased ocular pressure

-migraines with horrid auras

-beaus lines on fingernails (result of excessive vasoconstriction/raynauds)

-frequent sleep disturbances

-hypersensitivities to light and sound in evenings

-hangover feeling from reading or concentrating the night before

-overstimulation from brightly lit or crowded environments resulting in dizziness

-constant extreme thirst (first symptom)

-periods of persistant migraine aura

-eyelid lag for no apparent reason

Cheers.

The reason i mention these is because often but not always, these symptoms cause just as many problems for me as the obvious POTS ones like dizziness, body tremors etc.

[Nauthiz]

I have some similar oddities that you do i think

-I do get eye pain pressure

-Headaches, and more pressure when bending over forward sometimes, The pressure is often unilateral and effects my face and ear on the same side.

-Burning back pain, i think COULD be acid reflux MAYBE

-I am super easily startled and am sensitive to sounds and light sometimes

-I often feel worse morning and late night, i get straight "tight" feeling headaches, or a spaceness as if my blood left my head or something.

-Sometiems i feel frozen or something, i feel like im not there and im stiff feeling

-I also feel wierd pre-pain feelings, like im going to feel pain in my head or something but it doesnt quite get there.

-I have alot of diesgestive issues, i feel really bad after eating sometimes like i cant stay awake

-Sometimes a calf, or a forearm will feel stiff

- I feel the urge to pop my jaw or ears alot, strange but i dont know

- i have alot of strange anxiety too but it doesnt feel like anxiety it just hits me randomly.

- I also feel i cant breath alot or there is pressure on my body, usually this accompanied by alot of unexplained phlegm.

-With digestive issues i get bad spasms in my head like a feeling of a implosion. It seems related to digestion when im burning or something but im not positive, this is probably one of the weirdest.

Edited July 20, 2009 by flop
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[firewatcher]

-Periods where eyes are full of vitreous floaters

-pooling in head region when i lean forward

-mornings where i wake feeling like I have the flu

-visual tracking and accommodation difficulties

-increased ocular pressure

-migraines

-frequent sleep disturbances

-hypersensitivities to light and sound in evenings

-overstimulation from brightly lit or crowded environments resulting in dizziness

-constant extreme thirst (first symptom)

-constant excessive urination

-high hematocrit, RBC and hemoglobin

-high serum Creatinine

-low BUN

-low Lh, FsH, Estradiol and Testosterone

-cold intolerance

[futurehope]

In my opinion, there are other possibilities for the symptoms that people have. Sometimes, the other conditions do have treatment options. If we address the other issues, POTS may improve.

For example, I have thyroid issues because I had my thyroid removed and I need supplementation. When I'm tritrated properly, some of the unexplained issues decrease in intensity.

For that reason, I'd prefer not to list my symptoms because many of them, as far as I can tell, can be addressed by looking at them as separate from autonomic difficulties.

I'm glad you are doing this survey, but I hope many POTsy's realize having POTS does NOT preclude you from having something else that may be corrected or managed.

Frequently, on this forum, I see a variety of symptoms from posters, and just as frequently, the posters themselves, or their doctors attribute the symptoms to POTS. While, this is true in many case, I refrain from attributing everything to the same root cause until I've proven otherwise, because by doing so, I may be preventing myself from getting better.

For an example of this, there are several posters on here that have found they do have other underlying conditions, like MAST cell activation disorder, thyroid, potassium problems, sleep apnea.....which can be treated.

Anyhow, I do not mean to discourage you from creating a list of additional symptoms. I just wanted you to be aware that before I list anything, I, personally, would want to make sure that other possibilities for the cause my symptoms have been ruled out before I attribute them to POTS. That's why I prefer not to respond to your inquiry. But, thanks for your interest in trying to help us all.

[potsgirl]

Futurehope,

You've summed up my feelings and frustrations perfectly. I worry that so many posters are too quick to assign everything to POTS that they don't get things checked out that they should. Sure, there are many things that

can be attributed to POTS, but we may also simply suffer from other maladies that may be completely unrelated and need to be treated on their own. I know my dizziness, fainting, loss of balance/coordination, brain fog,

migraines, intolerance to heat and cold, and poor sleeping are all usually POTS characteristics. BUT, if I have a change in my symptoms or something new, I get it checked out, just like I would if I didn't have POTS.

Best,

Jana

[bjt22]

I dunno. Sometimes I think "hmm....should get this-or-that checked out", but most the time? Unless is something really new and unusual, even for me, I'm content to let it go. I have so little energy and I just really don't care to spend what little I have chasing back of forth between doctors. I go to my routine appointments with my family doctor and with the autonomic specialist, and other than that, well, I'm not willing at this point.

Unusual symptoms?

A lot have been listed...especially the visual symptoms. Migraine/cluster headache. Aura with and without headache. Probable coronary artery spasms. Massive fluid retention leading to congestion everywhere, including my lungs. Borderline for diabetes, high cholesterol. Balance difficulties, tremendous muscle weakness and fatigue, extreme sensitivity to light and heat, occasional difficulty swallowing....

Hah. I'll probably think of more later.

[shannon]

Interesting. I get the eyelid lag thing a lot (I'm having it right now), and it does seem to correlate with other POTS symptoms, although I don't think I ever made the connection until now.

I also get the extreme thirst sometimes.

And the sensitivity to crowds/brightness is big for me. Just sitting in a crowded mall makes me feel sick even though I used to love shopping and crowds and I'm outgoing. I think this is a common symptom for POTS people.

Thanks for posting this. Interesting!

[Broken_Shell]

Hi,

I agree that many of our "other" symptoms are probably related to autonomic and generalized neurological dysfunction, but I do feel that doctors are too quick to blame all of our symptoms on this condition as well. At any rate, here is a list of some of my "atypical" symptoms:

- Strange sudden feelings of falling, tipping, gliding, etc. I have a lot of proprioreceptive disturbances.

- Pressure in my head and wooziness associated with GI activity: eating, BM, passing gas, even stomach growling

- Excessive "thirst" and urge to drink water, especially in the am

- Myofascial tightness and pain, especially in my head, face, and neck so bad that I can not bite or chew and have to puree my food

- "Auras" that occur without migraine

- Feelings of tightness and numbness over various parts of my head

- Extreme heat and sun intolerence; even if it's not hot, to have the sun directly on me causes bizzare symptoms and feelings

- Above even in relation to being within a few feet of a burner that is hot

- High serum creatinine and albumin

- Low BUN

- Multiple daily episodes of sporatic, non-fasting hypoglycemia unresponsive to dietary changes

- GI "flares" of nausea, excessive bowel movements, and increased autonomic symptoms: cold sweats, dizziness, chest symptoms

- Extreme sensitivity to medications and supplements

- Temporary secondary amennorhea and large increase in symptoms with resumption of hormonal fluctuations

- Daily feelings of being "floaty" or "spacey" as if there is not enough blood going to my head in the absence of BP fluctuations

That's all I can type for now.

~ Broken_Shell

[firewatcher]

In my opinion, there are other possibilities for the symptoms that people have. Sometimes, the other conditions do have treatment options. If we address the other issues, POTS may improve.

For example, I have thyroid issues because I had my thyroid removed and I need supplementation. When I'm tritrated properly, some of the unexplained issues decrease in intensity.

For that reason, I'd prefer not to list my symptoms because many of them, as far as I can tell, can be addressed by looking at them as separate from autonomic difficulties.

I'm glad you are doing this survey, but I hope many POTsy's realize having POTS does NOT preclude you from having something else that may be corrected or managed.

Frequently, on this forum, I see a variety of symptoms from posters, and just as frequently, the posters themselves, or their doctors attribute the symptoms to POTS. While, this is true in many case, I refrain from attributing everything to the same root cause until I've proven otherwise, because by doing so, I may be preventing myself from getting better.

For an example of this, there are several posters on here that have found they do have other underlying conditions, like MAST cell activation disorder, thyroid, potassium problems, sleep apnea.....which can be treated.

Anyhow, I do not mean to discourage you from creating a list of additional symptoms. I just wanted you to be aware that before I list anything, I, personally, would want to make sure that other possibilities for the cause my symptoms have been ruled out before I attribute them to POTS. That's why I prefer not to respond to your inquiry. But, thanks for your interest in trying to help us all.

I agree that there are often other unrelated disorders that coexist with POTS and "shade" the symptoms and diagnosis. It was also my understanding that POTS is a collection of symptoms and not a "condition" by itself. As individuals, we will all react differently to just about everything and if we list every symptom that we have, the list will become so long as to include every person on the planet (not really but you get what I mean!) I think what most researchers are trying to do is find a core set of symptoms that all of us with POTS share (30 bpm increase on standing.) This does not exclude the other symptoms, or their relevance to the subclassifications of POTS (i.e. some of us are Orthostatically HYPER-tensive, not hypotensive.) I think what Ramakentesh is looking for are those "other symptoms" that would point toward further sub-groups and possibly a clearer understanding of the underlying mechanisms of our reactions or undiagnosed comorbid disorders.

[iheartcats]

-Visual floaters

-Flu-like feelings some mornings

-Weird dull, painful aches in my muscles...flares up some days, not others

-Temperature sensitivity

-Random fatigue

-Thirst...I sometimes worry I drink too much!

-Frequent urination

-Sleep disturbances

[ramakentesh]

yeah thanks for the clarification Firewatcher. That's exactly what Im trying to do.

Sure people have coexisting conditions - I do as well - an autoinflammatory disorder that effects my back but yes my point was that there are symptoms of POTS that are NEVER mentioned in published materials and I wanted to just get people to write down any old symptom to see if there were patterns. Obviouslyt the lines get blurred with comorbid thyroid issues.

That being said for me POTS was a pretty dramatic arrival - and it with it came 99% of my symptoms (i had migraines, thirst, tiredness and visual snow for a few years prior).

gees - how weird - I share most of those symptoms there Nauthiz, Firewatcher and Catlady - but I guess we all have pretty similar presentations.

[janiedelite]

My wierd symptoms:

-frostbite when I'm indoors, even in summer

-In between having freezing purple toes and feet, my feet and hands will get flushed and painful

- burning skin from head to toe

- burning mouth and throat

- flushing that gets worse when I talk and leaves my head and torso covered with red, itchy bumps

These are the main symptoms that leave my doctors scratching their heads and going "Huh?"

[morgan617]

I agree that sometimes once we get a diagnosis, no one looks at anything else. it took a looong time after my POTS dx to for them to realize it wasn't the only thing I had that made me feel or be seriously ill.

If you have anything new or that becomes much worse, you should never assume, it's just another symptom of POTS and get it checked out. Be as persisitent as you need to be. morgan

[Janey]

I agree that sometimes once we get a diagnosis, no one looks at anything else. it took a looong time after my POTS dx to for them to realize it wasn't the only thing I had that made me feel or be seriously ill.

If you have anything new or that becomes much worse, you should never assume, it's just another symptom of POTS and get it checked out. Be as persisitent as you need to be. morgan

It's interesting you say this because I feel like I haven't had a flu or stomach bug *since* getting POTS - because POTS feels like all of them! I must have had these infections though, but only noticed that my POTS/gastroparesis was particularly bad that day.

In terms of weird symptoms, I get:

- purple fingernails (something to do with poor circulation - duh!)

- feeling like my eyes are eggs with chicks straining to hatch out of them all the time

- that thing where your vision jumps to the side with every heartbeat (mainly on standing when the heart races) so it's like you're seeing two scenes of what's in front of you in quick succession.

- wake up with a bad taste in my mouth