IDreamInColor Posted November 10, 2011 Report Share Posted November 10, 2011 I'm hoping all of you will participate in sharing your symptoms list. I am very curious on how many of the same symptoms we share, as well as the less common ones that are unique to us. Please list every symptom, even the small ones that you experience frequently. Here is my list in no particular order...__Muscles drawing up, muscles won't relax__Flushes that begin in upper back and run up thru head__Diarrhea__Constipation__Headaches/Migraines__Hand/Arm Tremors__Legs Jerking Uncontrollably__Loss of appetite__Dehydration__Heart Palpitations__Extreme Weakness/Fatigue__Weakness in arms and legs__Anxiety attacks__Depression__Tinnitus__Night Sweats__Pressure in Temples__Clammy Hands and Feet__Sensitive to being touched__Sensitive to smells__Minimal urine output__Increased urine output__Chest Pains__Shortness of Breath__Eye auras__Dizzyness/Vertigo__Head feels funny__Stabbing pains in ears__Hearing tiny bubbles popping in my right ear__Pressure in ears__Muffled hearing upon standing up__Always cold, hard time getting warm__Nausea__Eye Dizziness, this is where my eyes themselves feel dizzy__Pinky and outter hand going numb__Blurry Vision__Unstable Temperature__Intensified hearing, as if each noise "swells" hard to describe__Abdomen Pain__Inflammation in mouth, taste buds and gums__Muscle atrophy__Dilated Pupils__Hard Time Waking up from NapsI think that's all of them,lol...subject to change daily Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 10, 2011 Report Share Posted November 10, 2011 -heart races with standing, anxiety, exertion -constant tingling hands feet sometimes trunk and face -tinnitus -Also have mast cell/allergy issues:anaphylaxis, flushing, swelling tongue/airway, trouble breathing, hives, itching -temperature sensitivity esspecially heat -sound sensitive -tired -need lots of sleep -muscle twitches -low grade fever -night sweats -constipation -diarrhea -lip blisters -increasing number of allergies -dermatographism -facial flushing -palpitations -headache -bradycardic when lying down -low BP I also have adrenal insufficiency so I don't know what symptoms are what but those are them! Quote Link to comment Share on other sites More sharing options...
louloutinks Posted November 10, 2011 Report Share Posted November 10, 2011 Just typed the whole lot out and my pc turned off for an update!!Dizziness near/syncope (obviously!)Tachy esp on standingHigh and low BP swingsNarrow pulse pressuresPositional headaches that are excruciating (standing or sitting)Pins and needles in legs,feet and scalpConstant pins and needles in left hand and numbness of left footWeak arms and legsTinnitus - ringing, hissing, thumpingHyperacusis (painful hearing)Whooshing sound of pulse in back of head that drives me to insanity as it gets so loudMuffled hearing (intermittent hearing loss with headaches)Head pressureStiff neck and painEhlers danlos - lots of joints pains/subluxes and easy tiring of muscles etcPetechiaeBlood pooling in legsLivedo reticulrisFlushingRashes and hivesPoor temp regulationConstipationIBSUrinary urgencyUrinary excess esp at nightAdrenaline surges (like when you have to slam your car brakes on to narrowly miss a car!)VertigoSpacey feeling - disequilibrium? where my eyes play catch upNo sense of smell then hypersensitive and smell things that make me feel nauseousCognitive issues - word recall, memory etcRestless legs syndromeArm tremors. Hands tremor with movementNausea and vomitingGood thread idea IDIC..... Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted November 10, 2011 Report Share Posted November 10, 2011 Severe fatiguePulling feeling in my neck like my neck can't support my neckDry eyes and dry mouthTachycardiaChurning feeling in chestWeaknessPain in neck, back and sacroiliac areaNausea in amDizzinessLack of appetite all day until eveningFeel extremely wobbly in amPoor sleep- wake many times during the nightsometimes tight and and full feeling in chestAdrenaline surgesHead pressure in back of headTemperature disregulation Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 10, 2011 Report Share Posted November 10, 2011 Good idea for a thread, but I can't write that much! Too bad there isn't a way to put this into a poll... Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 10, 2011 Report Share Posted November 10, 2011 I just woke up, so this is going to take some serious thinking =)- syncope- BP swings- tachy (obviously!)- arm and leg jerks- twitching in muscles throughout the day- allergies galore- trouble keeping down food any time I eat- severe headaches- constant fatigue- occasional numbness in hands- random joint pains (that no one has any idea as to why)- stuttering whenever I am talking and then stand up- tinnitus (fluttering noises that other people can hear)- heat intolerance: anything above 70 makes me feel like I'm in a sauna- urinary fequency- trouble staying hydrated- blood pooling- diarrhea/constipation Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted November 10, 2011 Report Share Posted November 10, 2011 -Tachycardia upon standing-Dry eyes, skin, lips, etc…-Heat and cold intolerance-chest pain-trouble breathing during bad episodes-diarrhea & IBS-constipation-GERD-dilated pupils-exercise intolerance-hiatal hernia-flushing-fatigue-hypersensitivity to noise, smells, medications-gluten intolerance-high and low BP-dizziness Quote Link to comment Share on other sites More sharing options...
lieze Posted November 10, 2011 Report Share Posted November 10, 2011 Wow friends do you realize what we are all trying to cope with?Look at these lists-all I can say is it's no wonder we are so incredibly stressed out.While I was getting my IV iron today in the arm I had my IV I was having numbness, tingling, pain and it looked like my fingers were turning blue.Part of me wanted to ask if those sensations were normal but for one thing there wasn't a nurse close at the time, for another I thought wow they are just going to thnk I'm really odd. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 10, 2011 Report Share Posted November 10, 2011 My symptoms may not all be from Dysautonomia so keep that in mind too... I'm not exactly sure where Dysautonomia stops and other things start.My main symptoms are:Extreme FatigueLightheadednessLow BPSevere IBS - constipationSevere Acid Reflux or GERD depending on who you talk toLow Body TemperatureAlways feeling really cold (possibly the low temperature but idk)Tingly Limbs"Sleepy" Limbs (My limbs fall asleep really easily and stay asleep for long periods of time)Balance Problems (especially in the shower...I'm thinking the heat maybe?)Trouble BreathingAnxiety (I don't like people getting close to me when I'm having bad days, it gives me these little anxiety attacks)Brain FogAches in my muscles (especially in my neck)Depression and Isolation (I'd say these are my worst enemies some days...like today)Double VisionLack of MotivationSevere and multiple drug allergiesCold Urticaria (allergy to cold)flushingexercise intolerancegluten intolerancepossible dairy intolerance Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 12, 2011 Report Share Posted November 12, 2011 my goodness, I'm so sorry to everyone that you go through this on a daily basis. here is my list:lightheadednessdizzinesshead pressureheart palpitationsfast heartratelow blood pressurebrain fog/weirdness"off"/out of it feelingadrenaline surges Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 4, 2012 Report Share Posted April 4, 2012 Found this older post and I thought of bumping it up.Here's a more or less complete list of my symptoms:- tachycardia while laying down as well as standing- palpitations that last from seconds, to minutes, to hours- "wild" swings in BP and HR- narrow pulse pressure upon standing- low blood pressure mostly while standing- headaches- chest pain (from mild discomfort to excruciating, dull to sharp, lasting for seconds or hours/days)- aching neck and shoulders- aching muscles in my legs(while at rest) and sometimes in my arms- muscle weakness- occasional shakiness (mostly in my legs, particularly during an adrenaline surge)- occasional joint pains- pins and needles/itching/burning/crawling sensations all over my body (mainly in legs, hands, and scalp)- adrenaline surges- fatigue- anxiety/panic attacks (or so I've been told - I'd say they are adrenaline surges)- exercise intolerance (or should I say fear of exercising as I don't want to trigger an increase in bp or hr). Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 4, 2012 Report Share Posted April 4, 2012 Smart thread !Thank you alex74alex for bumping it up!You guys made it easy for me because I experianse most of your symptoms and plus!Here are my bonus ones! (I am not sure if they are all from POTS).1) Lack of test sensation in the mornings.2) Difficulty swallowing esp round pills.3) Lack of concentration to follow a meeting, reading a book, watching something...etc)4) Dry and sensitive skin.5) I don't remember my dreams, I only remember nightmares.6) Dropping things.7) Seeing flying tiny black objects in one eye.8) My muscles get pulled, joints get dislocated very easily.9) Medics can't find my veins easily.10) (This one is very unusual) occasional strange feeling that I have lived an insident with all it's details before. To be continued..... Quote Link to comment Share on other sites More sharing options...
Linj10 Posted April 5, 2012 Report Share Posted April 5, 2012 I have a b12 deficiency and MVP so some of these may overlap from that.-dizziness/room spinning- black out feeling when standing too fast-headaches from mild to feeling like my brain is pulsing.-shaky hands- leg and other muscle twitches- mood swings- sensitivity to bright light and loud sound- stuttering- memory and word loss- weight gain- tachycardia- severe chest pains- needle sensation in my feet- cold hands and feet- low BP- cold sensitivity - blurred vision Quote Link to comment Share on other sites More sharing options...
peregrine Posted April 14, 2012 Report Share Posted April 14, 2012 Let's see - trying to grab the ones that are POTS-specific. In approximate order of frequency, with severity (1-3).3 Spaciness while walking (failing to see cars, people, etc)3 Extreme fatigue3 Cognitive defects (words, brain fog, etc)2 Pooling/discomfort/numbness in left hand (not really POTS, more POTS etiology)3 Lightheaded while standing2 Pupils doing funny things, blurry vision3 Need at least 8 hours of sleep to function (can't push it any more, used to be able to)3 Overstimulation on visual/auditory stimuli (crowds)2 Hyperhidrosis (oversweating)3 Overheat easily1 Can only function in meetings if less than 45 minutes long1-2 Nausea1 Headaches1 Palpitations2 Shortness of breath1 PresyncopeOnly the cognitive defects and extreme fatigue predate the POTS developing (and are likely due to a combination of joint pain, bipolar, and psych meds).I think that's it? But I hear cognitive defects make it hard for me to remember them all :^) Quote Link to comment Share on other sites More sharing options...
CC101 Posted April 21, 2012 Report Share Posted April 21, 2012 I already know as soon as you POTsies read this post your head started spinning right away! lol Well what I did was went to the DINET symptoms list, copied, pasted, and tweaked accordingly. The symptoms in bold are my most worst symptoms or just symptoms I deal with most. Side-notes are applied as well. Big Hugs!Lightheadedness Generalized weaknessPalpitationsTremulousnessShortness of breath (occasionally)Chest discomfort and/or painDiagnosed with IBS-C (Chronic constipation) and I blame POTS.Bloating Nausea (occasionally but more often lately)Abdominal painEXTREME FatigueHeadache/migraine (chronic/daily)Dizziness Tachycardia Exercise intolerance (depends on the day)Clamminess (Had pallor very bad until I went on beta-blockers)AnxietyBlood pooling in limbsIntolerance to heatFeeling cold all overCognitive impairment (includes difficulties with concentration, brain fog, memory and/or word recall)Cold hands, feet, and noseChillsNumbness or tingling sensationsLow back painAching neck and shouldersNoise sensitivity (can have TV on very low and hear it clearly, complain of others having TV too loud all the time).DisequilibriumArrhythmias (irregular heart beats)Feeling full quicklyLoss of appetiteLoss of sex drive (sometimes)Muscle aches and/or joint painsSwollen nodules/lymph nodesPolydipsia (excessive thirst)Restless leg syndromeNight sweats (has gotten worse lately)And then my own additions:Unable to stand in one place for long without getting sick and bloated; have eventually almost fainted once because of this when I was fighting against my symptoms at a concert. Was at the front of the stage and started rushing and pushing to get out of the crowd, my vision became pitch white and I thought I wasn't going to make it until a medic seen me struggling. This has happened only once, because I most certainly learned from that experience. (VERY SCARY!)Blurred visionOh and I am sure there is more. And this my dears, is why explaining our condition is so hard and why it is understandably, extremely difficult for those around us to understand and relate to what we go through. It just does not seem fair, but life's not fair right? We're fighters and that's why God knew we could handle it. Big hugs to you all & I hope you are all doing well! Quote Link to comment Share on other sites More sharing options...
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