HopeSprings Posted June 30, 2011 Report Share Posted June 30, 2011 Just curious to see what other people's POTS experience is like. Wondering if we all feel kinda the same yuckiness or if different things bother different people. Here are my top 5 in order, with the worst being #1.1. Weird feeling in my head/feel off balance, drunk/cognitive problems2. Eyes feel out of focus3. Heart symptoms - tachycardia/sensation of heart beating hard4. Fatigue/Exhaustion5. Multiple Chemical Sensitivity Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 30, 2011 Report Share Posted June 30, 2011 For my son:1. Severe nausea, daily2. Fatigue/Exhaustion3. Tachycardia4. Headaches5. Tremors in hands (getting worse)And now he has a new problem the last couple of weeks,- charlie horses in his calves. Christy Quote Link to comment Share on other sites More sharing options...
misstraci Posted June 30, 2011 Report Share Posted June 30, 2011 Top 5 symptoms in order of worst with 1 being the worst.1. lightheadedness (feeling like i'm going to pass out)2. head weirdness/pressure3. brain fog ?4. trouble breathing5. heart palpitations Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted June 30, 2011 Report Share Posted June 30, 2011 1. Fatigue/ Exhaustion/ feels like I haven't slept at all even though I have2. Tachycardia3. Dry eyes; weird pulsing in eyes4. Pain and heavy feeling in back of head and neck5. Brain fog and feeling like things are never in focusLynne Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 30, 2011 Report Share Posted June 30, 2011 1. Fatigue2. Trouble concentrating/brain fog3. Achiness everywhere4. Burning pains particularly in my feet, hands, face, and mouth with a metallic taste in my mouth5. Nausea/GI pain Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted June 30, 2011 Report Share Posted June 30, 2011 Mine are as follows: 1. Chest Pain/Pressure, tachycardia 2. Shaking & Tremors 3. Dizziness/Loss of Balance & Fainting 4. Sleep Disturbance, either can't sleep or sleep forever 5. Recently Neck Pain has startedI used to have severe headaches all the time but the Beta Blockers have helped tremendously with that. Quote Link to comment Share on other sites More sharing options...
jbenz1772 Posted June 30, 2011 Report Share Posted June 30, 2011 1. Dizzy/near syncope2. burning pain in toes, feet shootin up legs3. Muscle twitching/cramping4. Headaches/Aura/concentration/mood swings5. fatige/ sleep problemstied for 5th= increased symptoms starting 4 days before period to include Lower GI problems. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted June 30, 2011 Report Share Posted June 30, 2011 For my daughter - 1) Dizziness and feeling faint like she could pass out at any time2) Extreme fatigue3) Pounding headache with pain up the back of the neck and head4) Fingers feel numb and tingly5) Nausea anytime she eats or drinks Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 30, 2011 Report Share Posted June 30, 2011 1. Head and neck pain, all day and all night2. Lightheadedness3. Nausea/vomiting4.jelly legs/heavy legs5. Pins and needles hands, feet, face, head Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 30, 2011 Report Share Posted June 30, 2011 1. Lack of energy (not fatigue, but lack of energy to begin with)2. Brain fog on good days, confusion on bad days3. Muscle weakness4. Blood pooling5. Sleep disorders Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 1, 2011 Report Share Posted July 1, 2011 1. Heat intolerance/heat flush2. Chest tightness when upright3. Full feeling in head, yet lightheaded4. Blurry vision/pressure in eyes5. Tachycardia when upright Quote Link to comment Share on other sites More sharing options...
yuliya Posted July 1, 2011 Report Share Posted July 1, 2011 1. Tachycardia2. dizziness3. fatigue4. headaches/nausea 5. leg pain Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 1, 2011 Report Share Posted July 1, 2011 1)Heat intolerance2)tachycardia3)anxiety, "crazy" wired feelings4)shakiness5)exercise intoleranceProbably should have put shortness of breath in there too. Doh! Quote Link to comment Share on other sites More sharing options...
stacdliw Posted July 1, 2011 Report Share Posted July 1, 2011 1. Debilitating Fatigue2. Tachycardia resulting in shortness of breath3. Brain Fog4. Nausea/GI Symptoms5. Frequent Migraines Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 1, 2011 Report Share Posted July 1, 2011 I am pretty much like naomi...1) Feeling drunk, unstable, lightheaded, dizzy2) Very bad vision issues (my eyes never focus right, I feel like I am consantly straining them to see, pressure, and everything looks "off" at all times.3) Fatigue4) Nausea5) Muscle weakness Quote Link to comment Share on other sites More sharing options...
lmt033167 Posted July 1, 2011 Report Share Posted July 1, 2011 1. Dizziness/Lightheadedness/Vertigo; sometimes even moving my eyes starts an episode2. Fatigue; no amount of sleep or rest alleviates it3. Nausea; non stop even with meds have tried PPI's OTC meds nothing helps; non stop nausea started after surgery in Aug 20094. Extreme Heart Rate fluctuations; low to high without provocation - Bradycardia then it will go into Tachycardia even sitting 5. Extreme BP fluctuations; low to high and then will bottom out without warning or provocation Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted July 1, 2011 Report Share Posted July 1, 2011 Great Thread and interesting to see what everybody's Top 5 are. Wish we could take it to some clinic for ALL of us and say here...fix us please Thanks for posting this Topic...keep the responses coming. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 1, 2011 Report Share Posted July 1, 2011 1. The severe exhaustion/weakness mixed with an indescribable 'sick as death' feeling 24/7.2. Severe/crippling nausea 24/7 also, some vomiting.3. The headaches.... 24/7 also.4. Brian fog/cognitive dysfunction to the max sometimes. (memory loss up to weeks at a time W/lots of confusion.5. Urination sometimes up to 30-40 times a day along with diarehea from 8 am till about 5 pm...... That really doesn't even 'touch' it..... tennille Quote Link to comment Share on other sites More sharing options...
rach73 Posted July 1, 2011 Report Share Posted July 1, 2011 My worst symptoms1. Feeling constantly like I am coming down with the flu. I can't actually remember anymore what it feels like not to be sick.2. Light headedness / vertigo so you can't even move your eyes without the room spinning.3. fatigue / exhaustion. You've slept 12 hours and you are still tired.4. cold hands, my finger nails turn blue and my hands throb with pain.5. Only feeling ok if I am lying down flat. Bit difficult to live your life that way.I have tonnes of other symptoms like pain but thats the EDS or being so short of breath you spend hours on an oxygen concentrator so you feel like you can breathe but thats probably undiagnosed maysthenia gravis. Rach Quote Link to comment Share on other sites More sharing options...
Brye Posted July 1, 2011 Report Share Posted July 1, 2011 1. fainting2. fatigue3. brain fog4. nausea5. hand tremorsBrye Quote Link to comment Share on other sites More sharing options...
bensman Posted July 2, 2011 Report Share Posted July 2, 2011 1. Exhaustion/Fatigue2. Cognitive Impairment3. Eye Disturbances4. GI Issues5. Depends on the Day: Weakness/Aches/Pains, Flushing/Itching, Dehydration, etc.It's so hard to pick 5....It really depends on the day. Quote Link to comment Share on other sites More sharing options...
abnel Posted July 2, 2011 Report Share Posted July 2, 2011 1. shortness of breath - sometimes related to weather changes, heat, humidity, exercise 2. mild to severe chest compression &/or sensation of heaviness in back, spine, legs, etc. 3. heat and humidity intolerance 4. exercise intolerance 5. tachycardia and intolerance to emotional stressorsPrior to taking Florinef in March 2011 my worst symptom was light-headedness and pre syncope, but Florinef has really helped with that. I also had severe chest compression 24/7 for the first 12 months but this started to ease up in the second half of last year. Quote Link to comment Share on other sites More sharing options...
lissy Posted July 2, 2011 Report Share Posted July 2, 2011 1.Fatigue2.Chest pains3.Dizziness (off balance while upright)4.Headaches with the auras, blurred vision, numbness5.Dealing with a different symptom every day I wake. Quote Link to comment Share on other sites More sharing options...
Connie Posted July 2, 2011 Report Share Posted July 2, 2011 My sons:1. Extreme fatigue2. Severe memory issues3. Itchy skin, flushing4. Migraines, daily headaches5. Sleeping issues Quote Link to comment Share on other sites More sharing options...
abetterjulie Posted July 2, 2011 Report Share Posted July 2, 2011 1. Neuro pain2. Exhaustion3. Inability to stand w/o heart rate increasing4. Loss of work5. Sleep problems Quote Link to comment Share on other sites More sharing options...
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