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What Type Of Pots/ Autonomic Dysfunction Do You Have And How Did It Manifest As Far As Symptoms?


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I hear a lot of people say that that they knew something was wrong long before they were ever diagnosed. I am wondering what everyone's signs were throughout the course of onset. Mine went chronologically: loss of sensitivity to temperature, fatigue, 2 lightheaded episodes without tachycardia, 2 sporadic tachycardia episodes in 1 year, increasing visual disturbances,"anxiety" type behaviors, resolution of lightheadedness, no tachycardic episodes and no anxiety for 1 year, low potassium, shortness of breath tachycardic episode, increasing fatigue, indigestion, blood pressure abnormalities, increased lightheadedness, fainting type feeling, daily attacks, diagnosis, medication, buzzing senations in feet, weakness. I would say total onset took 4 years. As far as I know I only have pots and do not yet know which kind.

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Hi, I am very new to this site (this is my first post). I have not been diagnosed with anything besides a positive table tilt test (AWFUL) mostly because the neurologist that I went to had no idea what to do with me and referred me to Frader and I am currently awaiting my appointment there. I have had issues my entire life and have never known at all what is wrong with me. I remember the first time I got my period at like 12 almost passing out. The world got very fuzzy, I got extremely hot and it just started blacking out. Since that day i have had too many to count episodes like that. I get extremely hot , sweating intensely, then the world almost like closes in on me. It happens when I am Hot, when I am tired, when I am standing, when I am emotional, when I am in crowded loud places even when I am sitting upright.. If I lay down it will get better dramatically. I have had these episides upward of 25 year now. I have times in my life when it is better and I don't have any issues but it always comes back. I have a million other issues going on at anytime and have always thought I was loosing my mind because nobody (doctors and test) could ever tell me what is wrong. Every single test from brain scans, EKG's, MRI's, Neurolgical testing all comes back with you are fine. Well I don't feel fine. I am constantly dizzy and my world is constantly moving, the fatigue is unbelievable, pain in my chest and neck that is constant, palpitations, nausea, irratable bowel problems, asthma, Everything.The list goes on and one. It seems like every day is a new symptom. Its so frustrating. so I just started researching on my own. I would search day and night just trying to find something and I just happened to stumble across a website that mentioned POTS and I knew... Finally! I am not alone and most of all I am not crazy. I have no idea if it is POTS or somewhere else in the Dysautonomia area. All I know is I am finally in the right area. I have never been to the point that I can't function long term and for that I am extremely thankful. I have felt like since my third child was born three years ago my symptoms have been getting much worse and the fatigue is so intense that I can seem to shake it or work through it like I have always done. I work full time and have a husband and three young children and its hard to deal with it all. I am excited to go to the doctor at Frader that specilizes in this area and have someone believe that I am not crazy. I truly enjoy this Forum and having validation that this is really a real thing :)

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1. lightheadedness and fatigue

2. severe pressure headaches

3. severe chronic pain

4. mottling of legs (turning colours)

5. severe shortness of breath, flushing, low blood pressure crashes, fainting

6. onset of tachycardia when sitting or standing until I was bedridden

started having symptoms over 4.5 years.....symptoms 4-6 were a quicker onset....basically within a year

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Well I had digestive issues from birth. But at six everything went downhill I would faint at least three times per week, hotflashes started I had them often along with RLS, floaters and was diagnosed ADD because i also couldn't concentrate, comprehend, or remember anything I had also developed respiratory issues at six and then when I started my period at 12 I developed a pituitary tumor. I continued to faint often until they put me on amitryptoline to shrink the tumor that with my add Meds I did well until I turnd 17 and had a miscarriage after a very tramautic event, after the rape and mc I started fainting again only now I had constant bradycardia and developed varicosities to my legs. I was faint free with being on meds until a yr later I fainted at work while trying to call for help my heart stopped and restarted and they said nothing after four days in hospital it took me two days to try to walk again. I fainted all the time while working after that but would resolve after a minute to two so I quit working and besides joint pain and the palps and shortness of breath and lightheadedness i did well until after my pregnancies and now here I am having all these problems at once the fainting, hotflashes,tachycardia, bradycardia, high bp, low bp chills, neuropathy in hands and feet my legs and feet turn a purplish color and my toes are blue a lot I have ibs issues as well as temp issues. I was diagnosed with NCS but haven't been tested for anythinhg else with dysautonomia. So looking back some of the signs started at birth and then progressed at 6, 12, 17, and 22. And now I am 24 and it is worst than before. Also my pregnancies are complicated usually ending in preterm labor and had three miscarriages which I believe is due to this. Sorry so long I have trouble putting things into words smaller.

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First of all, I am sorry to hear your awful story, heissovereign.

Interesting, I also always go into preterm labor - wonder if there is a connection - we can start a separate thread for that one :)

I had sudden onset, although I have always not tolerated exercise (or pregnancy) well, and I have had digestive issues for the 6 years or so.

One fine day I started experiencing all of the following:

  • I started feeling dizzy several times a day
  • One near faint after standing
  • exercise intolerance and near fainting after walking for a few minutes
  • freezing cold no matter what I did
  • tense, jittery, tight chest feeling
  • pulse increase of 30 after standing

My onset seems more sudden than those of you who posted before me, but like I said, I have always been the "weak" type.

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=====CHILDHOOD=====

-As a child (6 yrs or so it started) I noticed I yawned a lot. Especially in stores or in other places with a lot of movement/stimuli. It wasn't the type of yawning from boredom either, it would be like 4-5 yawns every 2 minutes

-I noticed I had abnormal resilience to cold temperatures, I didn't seem to be bothered by cold.

-I always had profuse sweating in response to exercising. Despite not ever being fat, even mild exertion would leave me drenched.

-I developed anxiety disorders early on as a child

-I began noticing transient lightheadedness when I would stand up from a lying down position.

Teenage years

-I began noticing the lightheadedness more when standing up, also I felt like my heart was racing

-I seemed to be insensitive to pain, I could tolerate large amounts of physical pain without being affected very much.

-All the other symptoms from childhood continued

-I began developing daily tension type headaches ~15 yrs old

-Raynaud's phenomenon first noticed around ~15 yrs old but probably had most of my life

~17 years old I began having vasovagal attacks and chronic lightheadedness

-Morning vomiting - Couldn't eat anything in the mornings due to vomiting.

=======

Now here I am 23 years old. Wahoo!

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I know naomi, i kinda am hoping my pots has another cause, but the buzzing leads me to believe neuropathy.I started getting symptoms after i fell 40 ft from a chairlift ans was knocked unconscious.I am seeing dr. goodman on the 13th of this month and am planning on talking to him about it.

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Abby, thank you I realize how bad it sounds after writing it, I have coped well with it all due to the strength I have in Christ, I used to think I was the only one with these issues as I had never met anyone with them. But being here I see that its actually common lol I don't feel so crazy anymore.

Jangle- wow you are only 23! So you have been dealing with it about as long as I have. You also mentioned something about morning vomiting I didn't mention that because people think I'm bulimic when I tell the doc that but ever since about 13 I have dealt with it so I skip breakfast so all I do is heave. So strange I had no idea that was connected I just hate it. my toddler thinks its hilarious though.

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Lemons- I have that buzzing feeling too.. I didn't know it was relevant. I have it in my legs, feet, hands and I have trouble holding things I drop everything in my hands they did a nerve conduction test to see if I had carpal tunnel and ever since, I have that feeling in my face it will numb in certain areas and tingle. Kind of like the pins and needles in my hands and feet but the buzzing in my legs feel like a cell phone vibrating. I'm so glad we can share these things here and not be looked on as crazy. After I get my insurance I'm going to bring this up to my neurologist.

Naomi how do they test for small fiber neuropathy? This is all interesting lol my life kinda makes sense now.

Strange question but can these problems with the nerves be caused from excessive use of pressure points I can't explain on An open forum but I'm talking everyday sometimes multiple times mostly one right below my ear, also now if this place is accidently touched my face will freeze like I'm paralyzed for about 20 sec. I have never mentioned to docs because not something good to bring up to people. But it just got me thinking about it.

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Buzzing sensations???? ROFLOL I never connected those sensations to dysautonomia!!!

I had my cell phone in my back pocket one day when I encountered a family member they were very annoyed I never answered my phone. I looked and had several missed calls, but the tingling sensation is something I am used to and didn't realize it was my phone vibrating. They laughed when I said I seriously thought it was just my hiney with it's normal tingles and pain and not my phone.

Now I have to have it on sound and vibrate because every tingle makes me check my phone. I am sure people think I am crazy when I look at my phone, laugh and put it back in my pocket!

Most of the time i just carry the phone because I seem to be loosing my hearing and I can't tell a call vibration from a tingle. :)

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ha ha people hardly ever call my phone any more because i dont hear it or feel it going off most of the time.. doesnt matter what pocket i put it in!

I have always gotten hot or cold easily

heart stearted racing in 2005 accompanied by passing out- broke a vaccume that way ha ha

that went on for a few years a few dizzy episodes

complex migraines started in 2008

ice pick type head aches in 2009 that went in to trigeminal neuralgia

luekemia in 2009

2009 cronic sinusitus

2010 pernatious anemia

2011 ncs

2011 vite d diffiancy

2011 raynauds phenominon diagnosed but have always had super cold hands and feet

life long history of ibs and food allergies

2011 pots diagnosed at mayo in minn** passed out with a patient last day of work in march

2011extreme muscle weaknessand fatuige

2011 failure to thrive---i am beating that one!

2011 myasthinus gravis sympotoms

32 now and hoping things stop going down hill sometime soon

working out as much as possible but still unable to make it thru more than a couple hours of being upright at a time

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1999 - aged 22 - dizzy at uni one day - changed glasses and resolved.

2000 - aged 23 - noticed I had 'visual snow' in my vision all day long - diagnosed with persistant migraine aura

2002 - aged 25 - started to develop intolerance to caffeine. Coffee made me feel 'achy and tired' rather than waking me up. Doc said not to worry.

2003 - aged 26 - October - while exercising got a sudden dizzy spell. tachycardia started later thatn night - bang arrives full blown POTS.

2003 - aged 26 - November - sudden onset of severe sciatic pain - scans revealed likely Ankylosing Spondylitis.

Only thing out of the ordinaty in my childhood was that Id always feel tired and 'spaced out' for days after I got a stomach bug and when I used to weigh in at sport I always weighed 10-12kgs less than my class mates despite having the same height and build. Doc could not explain it.

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Heis, it could be caused by pressure on a nerve. When I was in the hospital my neck was tilted weird and it created restless leg syndrome type pain. Small fiber neuropathy is diagnosed by a skin puncture. From what I can gather they basically give you a hole punch. Wedont, yes exactly like a phone vibrating. The buzzing is the nerve malfunctioning.

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I went 13 years with symptoms, starting with a virus; thought I had optic neuritis in left eye, but by the time I got to the neuro 2 months later, the pain in my eye was gone. I had nerve pain and heaviness on my right side, too, with pitted edema in my right ankle, and was put on medication for high blood pressure...(my grandfather died at 46 of a massive stroke)

2000 Binocular defect in left eye diagnosed after 18 months

2003 Surgery on defective Eustachian tube in right ear after another virus

2004 Coughed up 1/4 cup of frank blood..hemoptysis...no explanation...

2008 Tachycardia, pressure in chest, insomnia, fatigue, hot flashes, nerve problems, tingling, numbness, electric shock pains in groin

2009 Dizziness, head and neck pain/fullness, jaw pain, nausea and episodes of extreme Vertigo with projectile vomiting and bedridden for several days X 2

2010 Still dizzy/ GI and GU problems/ Abdomenal Pain, IBS and Bladder spasms

2011 Misjudging curbs/damaged my car 3 X!!!

2011 August/September...Diagnosed with Dysautonomia/Pure Autonomic Dysfunction/ SuperPOTS/Mitral Valve Prolapse/Sleep Apnea

2012 Relieved that God does answer prayer, and that there are lessons in the WAITING :)

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  • 3 weeks later...

Now that the diagnosis is in... I apparently have a combination of hyper-POTS and pooling POTS together (double the fun!) and NCS. Symptom-wise:

ever since early childhood - alternating diarrhea/constipation, constant low-grade nausea (tummyaches), phobia of needles (thanks, Dad... *sarcasm*)

first syncope episode with needles - age 15

age 25 (3/2011) - begin taking Cymbalta for fibro/joint hypermobility-related pain. Begin having episodes of spaciness, typically while walking (took me a while to realize that was the main time I was on my feet... duh). Also begin having overheating/sweating.

7/2011 - realize one morning while getting dressed that my heart rate was at 156. Stop taking the Cymbalta. No changes in symptomology.

8/2011-present - other symptoms (nausea, headaches, blurred vision, lightheadedness, failure to filter sensory input, more GI tract issues) develop.

2/2012 - diagnosed.

So in my case... basically say "some early GI stuff, plus needlephobia-triggered NCS, then sudden development of Cymbalta-triggered POTS" and it's about right.

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hello, i am very new here.

i have always been fatigued and needed lots of sleep and naps. several years ago before a shower, i fainted, but it wasn't a big deal. i started to notice that i could not tolerate drugs that i normally could, especially pain medicine after a few minor surgeries. after a horrible fainting episode, i had to bear it and take advil after getting my wisdom teeth out. i was a very, very busy person before this happened. my problems started as i was weaning off of an SSRI (zoloft). i went through the normal dizziness/electric zaps/withdrawal. i noticed that i could not tolerate caffeine or alcohol at that time. there were a few very terrifying episodes of fainting spells in the middle of the night that awoke me from my sleep. i went to see a cardio becs i was having heart palpitations, too. he gave me the tilt table and diagnosed me with "dysautonomic syndrome." told me to drink lots of fluid, eat salt and avoid alcohol, so i did that. about 3 months later, i went out and drank a few beers (about 3). nothing crazy. then i had the mother of all fainting spells, ended up hospitalized and haven't been the same since. that was 15 months ago. :(

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