First Sign/Symptoms of POTS

[Jacquie802]

Hi, I am just wondering what everyones first few symptoms of POTS were before they got a diagnoses. My doctors believe that in July 2003 I came down with a viral infection and that is how I "got" POTS. However, before that even happened all throught high school I would sleep for hours and missed alot of school because everyone thought I was being lazy. Some still do to this day I think. I don't remember having heart problems then though, I just know my bp was low.

My symptoms starting in June 2003 (when Dr.'s think I got a viral infection that caused POTS ) were

Tachycardia/arrhythmia

Blood pressure problems

Tingling in extremities

Lightheadedness

Black Vision

It seems like I am suffering from more symptoms now though, such as the blurred vision, vertigo, and many more. Is this a cycle that occurs before a person gets better?? Or is this just the beginning of getting worse?

[PattiL]

Hi,

My daughter Chrissy also got POTS from a viral infection in 2001 after a bout of broncitis. Her symptoms were mainly weakness, fatigue, fainting and the general flu-like feelings. She got sick in Oct. and was dx'd through a ttt in Dec. The process was pretty quick for her I think b/c we live near Cleveland and there are a few Dr.'s available to us that specialize in POTS. The first Dr. put her on a beta-blocker which really didn't help, then Dr. Grubb took her off that and put her on florinef. That was a great turn around for her.

Chrissy also missed most of high school. This happened in her sophomore year, which she ended up being tutored (at home) and she basically never went back to high school. She spent her jr.and sr. years at the community college, they were great in accomadating her with afternoon classes and most anything else she needed.

Chrissy's symptoms come and go--she definitely goes into a POTS hole every time she gets a cold, sinus infection, etc. Her symptoms seem to change too--and I don't know if it's a sign of getting worse or better. Her nausea has either gotten better, or she's so used to it that it doesn't bother her as much.

That's all I know is that Dr. Grubb told us four years ago that she should outgrow POTS, b/c she did get it after a viral infection and he said by her early 20's he was hoping it would be gone. We're still waiting!!! We're going to see him next week, so I'm going to ask him about this.

Patti

[Dizzy Dame]

I randomly got sick, one day I was riding a horse and I almost passed out...three days later I was hospitalized and I've been POTSy ever since.

My symptoms have improved with proper diet, physical therapy and MAJOR lifestyle changes, I'm hoping I'll fully recover, but I'm not expecting anything magical to happen

main symptoms:

drop in bp of over 20mmhg when standing

increase in heartrate when standing (between 110-140)

dizziness, wooziness, nausea, syncope and near-syncope

[calypso]

My main symptom as I developed POTS was shortness of breath, and tachycardia, but I didn't realize I had the tachycardia until I was taking a shower one day. I felt my heart going pretty fast and thought it was odd. I checked my pulse and it was almost 150!

I had a very wide range of symptoms over the last two years. I have fewer symptoms now than I have ever had. I think that's because I am fairly stable, on meds and because I have distanced myself from giving birth to my daughter (my POTS came on postpartum). My hormones seem to be evening out somewhat.

Symptoms will wax and wane for many here. Wishing you good days ahead.

Amy

[Mrs. Glass]

When I first started getting symptoms I was walking twice a day. It was therapy for my back after a car wreck. Then one day I could not walk it I was so weak that I could barely make the block. My heart was beating funny. It would beat then vibrate. At night it would race so fast that I could not sleep. The fatigue got to the point that I could not walk by myself, and my b/p would drop so low that it could not be read. I ended up in the hospital 4 times for the same thing. And once in ICU because my b/p was so low. My docs thought that it was a blockage in my heart. After all of the testing it was not. Now I am still going through tests to find out what it is. All of my symptoms point to Shy-Drager. One doc said that it was a good posibility, and another one said he wasnt sure that he would have to research it some more. In the meantime I am still suffering, and no closer to a dx than when I started. It has been a long hard year.

beginning symptoms fatigue, heart beating wildly, low b/p, dizziness, weakness, fainting, and near fainting, headaches, vision problems, constipation, and I can not remember all of them. But the symptoms are getting worse with time. Now I can not walk without a cane as I am afraid that I will fall. Hope this helps you. Vanessa

Hi, I am just wondering what everyones first few symptoms of POTS were before they got a diagnoses. My doctors believe that in July 2003 I came down with a viral infection and that is how I "got" POTS. However, before that even happened all throught high school I would sleep for hours and missed alot of school because everyone thought I was being lazy. Some still do to this day I think. I don't remember having heart problems then though, I just know my bp was low.

My symptoms starting in June 2003 (when Dr.'s think I got a viral infection that caused POTS ) were

Tachycardia/arrhythmia

Blood pressure problems

Tingling in extremities

Lightheadedness

Black Vision

It seems like I am suffering from more symptoms now though, such as the blurred vision, vertigo, and many more. Is this a cycle that occurs before a person gets better?? Or is this just the beginning of getting worse?

[Dawg Tired]

Extreme fatigue. Spring 2002 I had a viral infection and I have been extremely fatigued since!

[HoldOnToHope]

My daughter was 15, in the middle of her 2nd cross country season, and in great health when she became ill. It appeared she had something like mono. She spent most of her time on the couch due to fatigue, general weakness and nausea and started missing lots and lots of school. She could no longer run. She battled nausea every day all day. She was miserable. She was diagnosed with POTS [TTT] and started on treatment. A year and a half later, she is much, much better, with fewer "crashes", thanks in part to better coping skills, good medicine and I believe [eternal optimistist] she is slowly outgrowing it. She takes florinef [helps with blood volume], midodrine [constricts the veins and helps get blood back to upper body & brain], zoloft [for anxiety & general well being], birth control pills [hormones help her feel much, much better] and melatonin [helps her get the sleep she needs]. She also drinks and drinks and drinks. She drinks a LARGE [blue - ] Gatorade every single day. This combination has made a world of difference. Symptoms wax and wane. A symptom like nausea will be gone for awhile and then reappear. Fatigue will come and go. Blood pressure and heart rate issues are probably there most of the time....but controlled. She'll have good days and bad days. Good weeks and bad weeks. It's the nature of the beast. She was probably at her worst last summer when multiple symptoms were all doing their thing at the same time, but she's now a part-time student, working hard to stay on a graduation track and some days, she is symptom free. When she "crashes", I remind her that "this too will pass" and to rest and let her batteries recharge. I hope this helps you. You are not alone.

[Ernie]

HI,

My first symptoms when I was 7 years old was fainting.

[shannon]

Hi,

My first major sign was a near-faint (totally blacked out, couldn't hear anything) at the age of 13. For much of high-school, I was chronically fatigued and weak and experienced episodes of high HR and low BP. There were many symptoms that accompanied this. Some of them include:

--Chest pain

--Migraines

--loss of sweating

--lightheaded, dizzy, palpitations

--excercise intolerance

--heat intolerance

--poor concentration at times

--funny feeling in legs (and sometimes arms) ... like they are really heavy or something.

--noise and light sensitivity

--flushing

--big pupils

--tingling, cold

It is difficult for me to remember what my very first symptoms were because I wasn't diagnosed until the aged of 17 --- quite awhile after my symptoms began.

Also, I think that POTS can be cyclical in nature---I don't know if that is what you are experiencing.

[Aprilmarie52]

my first symptoms were in December 2000. They were:

chills (hot-cold-hot-cold)

loss of appetite

insomnia

tachycardia

Mine is hereditary, but it did start after an allergic reaction to an antibiotic

[Sue]

Hi

My first episode was during my pregnancy in 1987. My husband and I were at a lamaze class and I started feeling dizzy, off balance, sweating, heart racing, nauseus. Our instructor thought I was going into labor but she was wrong. Kelly was born four weeks later. Symptoms still going strong!!!

(((Hugs)))

Sue

[dizzygirl]

hi..

i was born with tachycardia.. really i was!!..my mom says that my heart has beaten very fast since I was born...

i can really remebr though being about 4 yrs old.. and being at childrens hospital in Buffalo NY.. and I kept telling the doctor that my "heart hurt".. only at 4 yrs old.. I didnt know that it was tachycardia and chest pain.. around through out childhood.. I had alot of concentration problems...shortness of breath.. and constipation..well cycles of constipation and vomitting and diarrhea..

I can remeber my mom making me drink prune juice.. YUCK.. and then for nausea and stuff my father would give me Milk of mag.. also YUCKY!

so through childhood I had

~tachycardia

~SOB

~concentration difficulties

~constipation

~diarrhea (GI issues)

~ severe fatigue then and now

I wasnt able to run around and ripe and run like other kids my age either.. my chest would feel like ti was on fire.. and my heart would beat so fast.. it made me feel sick.. that and my legs always felt "weird"

and once I hit like 11-12 yrs old.. EEWW! HOLY POTSY !!everything under the sun.. I missed so much school...in combo with pots ( we ddint know it was pots though) myparent always thought I had the flu... and I would run pretty high fevers.. and the chills sucked big time.. and I'd often have lung /bronchila infections as well..

I'd wake up in the AM and feel horrible.. and sleep all day long.. and by the mid afternoon I'd start feeling better.. then again in the evening I'd start to crash again..

SO now days.. I have more sysmptoms then I care to think of.. I do have moments though were i feel OK.. and can get some basic things done.. for me pots has gotten much more sever and intense...

I got diagnosed finally..in Novemebr of 2002 after a positive TTT... I believe that there are some genetic factors going on in reagrds to pots w/in my family.. as i see dysautonomia in my mom for sure.. woithout a doubt.. and also in my father.. as well as multiple mememeber of the women in my moms side of the family..so I lived a good 20 yrs with pots before anybody figured it out!!

Edited December 14, 2005 by dizzygirl

[morgan617]

I've had problems my whole life, but around 2001, realized I couldn't do anything without getting really tachy and sob....

[Guest Belinda]

Well I am newly diagnosed:

My first symptoms were tachycardia-had ablation in 2001 no idea what caused it- then no problems for like 3 yrs.

Then last year I developed two weeks of not being able to sleep then tachycardia hit again.

Got chest pain, s.o.b.,esophageal spasms,kep getting this sqeezing feeling in the back of my neck,

past out twice,bp highs and lows, vision problems hit after being on prednisone for a month then weened off, got a cold and then bam couldn't walk across the room for two weeks..and here I am. oh yeah I have gastroparesis and can't poop.

Edited December 14, 2005 by Belinda

[hockeykid]

When I got sick my main symptoms were:

~fatigue

~hot flashes

~nausea

~light sensitivity

I have had symptoms for all my life(but continuesly got worse after a virus and then a year later I got sick again with another virus that put me into full blown POTS) After getting sick the first time(I didn't realize that anything was wrong because everything was coming on SO slowly and thought it was the normal part of growing into a teenager) my main symptoms were:

~nausea

~blacking out(it's a wonder that I never fainted because I didn't know that I should sit down so I never did )

~abdominal pain

~fatigue(nothing anywhere NEAR like it is now)

I think there may have been some more but I don't remember them.

I definately have more symptoms now than I did then but am slowly getting better. Hope this helps!

[ramakentesh]

looking back i can see some minor symptoms for some time, but they werent any concern until after a cold in 2003 I was doing some heavy fitness training and nearly fainted. After this I started getting attacks of adrenalin surges and started feeling dizzy all the time - within a week i was walking around like a zombie feeling like i was on another planet every time i stood and nearly passing out all the time.

It gradually improved so far that I was almost better until my recent return from overseas and Im in a major pot-hole - probably the worst ive been so far.

its important to note that the current theory on the cause of POTS in the majority of patients in Australia - if not the world if these figures translate - is that exposure to a chemical or more probably a viral infection methylates the NET gene promoter basically turning the gene off - causing POTS.

[r_innes]

I began with hot flashes and generalized hyperhidrosis. Within a year, I had tachycardia, tremoulousness, blackouts and fatigue.

The funniest thing about my symptoms is that they seem to flux over time...sometimes a little better, occasionally a little worse, and it nevers seems as though the same one is in the spotlight. Right now, for example, the dizziness is worse and my hyperhidrosis is mainly confined to my underarms, but overall I feel MUCH worse. Hopefully that will change soon, as my symptoms always do.

Anyone else experience continual change of severity of symptoms and of symptoms themselves?

[HoldOnToHope]

Wish I could tell you where I heard this, but I can't remember....anyway, I heard that those people whose symptoms vary all the time are more likely to recover than those folks who have the same symptoms all the time. Has anyone else heard or read this?

[yogini]

My first signs were dizziness, weight loss and extreme fatigue.

My family tells me I looked really skinny and tired over Xmas 2003. I got a virus in Jan 2004, after which I threw up blood (which turned out not to be serious. I remember being very tired after the virus. I went to the gym after work on a Tuesday in mid Feb and started feeling really dizzy and had to stop my workout. Looking back, those were my very first POTS symptoms.

The dizziness didn't go away and on Wednesday I went to my doctor he said I was probably dehydrated and that I should drink more fluids. At the time I thought he was blowing me off, but he wasn't so wrong. That Thursday I went to work and started feeling really dizzy on the subway. I made it to my office and then all of a sudden I couldn't stand up. I wound up lying on the floor and having convulsions. That was my first POTS attack. Two years later, I am still petrified of taking the subway!

[Jacquie802]

Yeah, the subway would def. cause my vertigo and dizziness to occur. Sometimes I can't even stand up let alone drive when I am feeling horrible.