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summer

At What Age Were You Diagnosed With Dysautonomia?

age of onset and diagnosis  

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I wasn't diagnosed until last year, but I had already been having significant symptoms for four years when I finally got diagnosed. Not totally debilitating, but enough to seriously interfere with work and school. I recently got a copy of my medical records, and for years I was going to the doctor once a month or more; in each entry, my doctor writes: "complains of excessive thirst, complains of orthostatic intolerance, complains of racing heart" but even though I kept coming back with the same complaints, they just ran an ECG once and told me nothing was wrong. I couldn't believe my doctor had actually written the words "orthostatic intolerance" and didn't make the connection that I had CHRONIC orthostatic intolerance!!! It was only when I got to a point where I was struggling to be able to work part-time (I had long ago given up on full-time work) that my doc finally started to take all my "complaints" seriously and sent me to a cardiologist who did a TTT. The crazy thing is, this woman is actually a GOOD doctor, generally speaking -- I have been really happy with the care she's provided for all my other medical concerns, and now that I'm diagnosed with POTS she's been great. I think it's still just a relatively rare and un-talked-about disorder, and she just never made the connection for all those symptoms.

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Guest brianala

I'm pretty sure I have had this my whole life, or at least since early adolescence.

I was just diagnosed with NCS, IST, and MVP within the last six months. I'm 28.

I said "yes" to being misdiagnosed not because I've had other diagnoses that were wrong, but because every time I've gone to the doctor with something related to this I've been told that I am fine, it's all in my head, I'm just stressed out, etc.

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Hi Summer,

I was diagnosed at age 69, but I'd felt very poorly for a number of years before that. I'm still seeking what I hope to be a definite answer to my failing health when I see a 4th N in June. This N is a Movement Disorder specialist.

Mary P

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Hi Everyone,

Thanks for responding to the poll. I find it really interesting how young most of us were when we first experienced symptoms. Now I'm wondering if others experienced symptoms when they were young, had improvement for a number of years (like a decade or two) and then had symptoms return years later.

Mary P - I've sent you a message. Hope everything goes well in June.

Brianala - Yes, I'm sure being "stressed out" has been a common misdiagnosis for most of us! Glad you eventually got some real answers.

Jump - Wow! She actually wrote "orthostatic intolerance" and then did not persue it? I think even our "good" doctors get into a rut of diagnosing the same things over and over - like the 25 most common things - and after a while they just don't consider things that they don't usually see. Glad she finally referred you.

It is a relatively un-talked-about disorder. Does anyone know if med student learn about it at all in school?

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Oh I forgot one thing on this topic that I wanted to say: I've had SOME symptoms of dysautonomia since childhood, but I didn't have symptoms that interfered with my daily life until about four or five years ago when I was 22. As a child, I ALWAYS had polyuria and my parents used to get annoyed at how frequently I had to urinate -- but they also realized (from accompanying me in public bathrooms -- this has been happening since I was very small) that no matter how often I went I always had to pee a LOT in terms of volume. Then as a young adolescent (13 or 14) I started really having noticeable polydypsia, and started feeling "really sick" every single morning. My family just said I wasn't a morning person, which was an understatement!

I also remember when I was 14 I went to the doctor for a physical, and they found that my heart rate was only 40 -- which is very bradycardic for someone under the age of 21. They all panicked and my doctor called another doctor in and they talked about what this could mean for a few mintues -- meanwhile I got up and walked around because they wanted to see if I was dizzy or off-balance -- then they took my pulse again and it was a normal 80. Sometimes I wonder if this incident was really an early POTS symptom.

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I was six the first time I had symptoms. I never could tolerate the heat and often complained of dizziness. I started fainting at 14. I recently read my medical records. My mom would take me to the doctor. The doctor would tell her that I was fainting from ear infections, anxiety, or some other crazy reason. They would always do an ekg and nothing ever showed up at the time. I kept fainting every so often. Then, when I was 24, I started having life-altering symptoms of fatigue, racing heart, migraines, dizzy when standing up, etc. I was told it was anxiety, I was a wife, mom, and college student. It was just stress. I decided to switch doctors after I gave blood at a blood drive and spent 3 hours going in and out of consciousness. Someone had to come drive me home. The next day, I met a doctor willing to listen to me. He sent me for an ep study and a tilt table. I had an ablation for AVNRT and was diagnosed with NCS and OI. I finally felt validated, and my mom did too. She always knew something was wrong. I still go to the same doctor, and I will always be thankful to him that he took my symptoms seriously.

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Hi- I can remember having symptoms at about 4 yrs old.... (now that I've educated myself on pots) .. symptoms became increasingly worse at about 11-12 yrs old.. and then again when I was 19-20 and at the point they where disabling symptoms and i had to stop working and going to school....

i was diagnoses at 20.. confirmed dx's at 21... before my diagnosis of dysautonomia they (doctors) threw mostly mental health diagnosis my way.... b/c they couldnt figure things out... So i must be a nut case if the all great and power dr cant figure me out right?!?! :):D<_<<_<:wacko::ph34r::lol::lol:

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Sick suddenly at age 20. Diagnosed 4.5 years later, age 24.

I was misdiagnosed as hypoglycemic, anemic, psychologically disturbed (conversion disorder or panic attacks).

Most doctors simply did not seem to perceive the extent of disability and hardship the symptoms were causing. I saw more than 40 the first year of illness, when I was barely able to walk, couldn't speak coherently, and looked like a ghost. They didn't know the cause, and they didn't care.

I found my own diagnosis, then confirmed it with a POTS specialist I found here on DINET's physician list. He's really awesome, and he really cares about all his patients. You can tell the difference.

My impulse was to take the diagnosis and slap previous airhead doctors in the face with it. But I resisted the urge.

I'm semi-functional now. I've finished college (finally), started grad school, and am looking forward to working soon. As my POTS doctor said when he diagnosed me, it's just really sad that I was left untreated for those years. In a way, getting treatment was like coming back from the dead. Older and wiser. I suppose.

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I'm fairly certain I didn't have POTS symptoms when I was younger...I had a decent time in High School gym class, walked a lot (loved walking!) and had a lot of endurance, played kickball like crazy in grade school...worked part-time in High School and still had good grades...

So while I had occasional migraines and menstrual issues, that was about it. And some allergies that worsened as I got older and allergy-induced asthma. I got that mostly under control with Zyrtec and seasonal Nasacort.

I also used to work in marketing where I had to do long hours at Trade Shows occasionally and was a very busy job...and I held up ok. My EP doesn't think I could've handled the Trade Shows with POTS without a severe crash.

Maybe it started to creep up in my mid-20s? I just can't remember. I know things got really noticeable a couple months after I had the worst flu of my life. The day I came down with that flu (and that flu came on over a 2-hour period, I am not exaggerating. At nine I was fine, at ten a little woozy, at noon feeling horrible horrible horrible). On the way home from work with that flu I saw a guy get hit by a car and fly through the air and had to call 911. I sounded so bad and upset they just got my number and told me not to stay as they were on their way and I saw someone going to help him. Wouldn't want to leave someone alone like that.

So I was sick plus traumatized. I still worry that had something to do with setting off my POTS.

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I had fainting episodes in my teens but it was chalked up to low blood sugar. Two episodes happened when I was standing in place for a long period trying on prom dresses. Happened again in the same scenario trying on wedding dresses.

Had on and off vertigo episodes and lightheadedness with no real reason.

Tachycardia started in my late 20s after the birth of my second child and things went downhill from there. It took several years to get to the right Dr. (an EP cardio for me). I was just told I had inappropriate sinus tach but symptoms kept getting worse. POTS was diagnosed after the EP did a tilt test....other heart arrythmias developed a few years later.

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Full out fainted several times and got dizzy for all my life, but it was chalked up to being overheated (the faints always occurred in warm weather), ear infection, sinus infection, or being 'just klutzy' when I fell b/c I was actually light-headed.

Symptoms got worse when I was 18- told I had IBS, just wasn't taking care of myself, had problems adjusting to college life and was stressed, panic attacks, had "just a little virus" that, when I kept going back to student health b/c I couldn't regulate my temp and was tired all the time, was classifed as mono, and just generally had a weak immune system (which is true, but still...).

Then, in law school, it was discovered that I had a lot of ovarian cysts- so then I had PCOS and a range of unspecificed endocrinological disorders. Finally, at age 24, went to see a WONDERFUL specialist endo who ran a full battery of tests, BELIEVED my symptoms, and said yes, you had some ovarian issues, but that's relatively normal. You shouldn't be feeling like this, and I'm sending you to an autonomic disorders specialist because I think you have POTS. Lo and behold, he was right.

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I KNOW i had this as a child always had to lay down right after eating a meal. anemic all the time, fell for no reason at all, causing breaks, sprains and always had to sit down. Breathing problems when sick, thought I would die with not enough breath. when i got the flu i got it the worse always, fevers would hallucinate, bruise easily, never find my words and be comical by playing charades to get other to help me, had ectopic preg.almost died on table, lost large amount of blood. several surgeries show unusual fast heartbeat while under.(just found that note)

years later 3 babies large loss of fluids and weight loss, nausea can't stay hydrated while carrying babies. Have them 1,2,3 because they believe I may never have any since all the damage done. Large loss of blood from first born. I chose natural childbirth, and all the way to the end i'm bleeding everywhere. I think this is normal as I'm a kid. Then the Dr. has me have a spinal baby forceps delivered. I get the worst spinal headache ever! More vomiting and headache stays for days. Iwent home with the worse migraine, so bad that when i look at the picture of the nurse wheeling me out holding my baby out i cringe thinking about it.

Nursed 3 babies last one for long time. knew I had ADD, always bleed way too much each month with periods. Irritable bowel, bladder issues all seemed neuro. Noticed i would hurt my feet and not know it same with hands. Began to have weakness and headaches so bad i couldn't stop crying. MisDx. anxiety and depression. would zone out or space out, back then when you were depressed you were checked for thyriod. some how mine was missed. a scan was done with iodine and i needed thyroid meds. AFTER THAT I became allergic to iodine, almost every antibiotic. started having episodes of chest pain, kept thinking I had lupus high ana, i was frustrated as no one knew what was wrong with me. Soon I WAS the girl allergic to everything. thirsty all the time but lips always dry. hungry all the time, and would get shaky without food if with held too long.

i felt like i had ms or lupus asthma, then i got the flu or a virus sooooooo bad i ended up in th hospital for 6 days after being sick for 4 at home.

GOT DX DEC 07.

The rest of my story is on my about me page, right now my nerves are jumping in my arm and I need to put my cubital tunnel brace on.

sorry got to take care of me right now, can finish later.

i've been very blessed since that day.

i share and edit later as my pots is acting up as I type.

thanks for understanding,

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I wasn't diagnosed with it until I was 34, but I've had problems off and on my whole life. There were times when I was extremely clumsy and times when I could ride carnival rides non stop without getting dizzy ... honestly, I think I was born with a gluten intolerance and it just affected me differently thoughout my lifetime.

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I lived a very normal and healthy life until the age of 52. After a hurricane in nov 05 I was helping my daughter clean up her house and after that started having panic attacks after exercising. Consulted drs, all who said I was nuts and needed to be on meds. Took the meds and got very sick. Finally one dr told me to put on a heart monitor and just making a bowl of oatmeal in the morning was giving me a heart rate of 130, that got the dr attention. After several misdiagnoses I recieved my pots news in oct 06. Now three years later I am getting stronger very slowly and hope to beat this disorder one day at a time.

Maggie

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I wasn't diagnosed until I was 47 years old but I had my first real attack of ' POTS ' which included passing out , sweats, dizziness, vomitting and pain all over followed by the most awful chest pain that lasted for 2-3 days............on my 14th birthday .

I'd had a few simple things before this but this was my first full attack , which funnily enough ended me up in the woman's gyne ward as a suspected pregnancy :o:o:o:o the fact that I'd never been with a boy let alone had even kissed a boy at 14 didnt matter my mother and the doctors knew best ..............how red faced where they when they discovered I was still a sweet and innocent girl :)

So, in all I've been told I have had .M.E. Scleroderm . Excessively bad Flu. Post Tramatic Stress syndrome ......three times . Excessive stress and shock and the cop out of all time was .........I'm a Hypercondriate , which would have been fine IF I wasn't having angina and blood pressure problems whilst actually taking to a physiatrist , who thank heavens called for help as my heart had dropped its beats to under 30 and I was on the way to the big clouds in the sky :( She retracted her opinion after that episode and said she just didnt know either ...................ah , the medical profession has a lot to answer for as far as I'm concerned , including the way my ex-husband treated me because of her stupid remarks and the fact that once said HE ( now my ex ) believed her and used to leave me in pain and with terrible heart problems telling me to 'grow up and stop being such an attention seeker ' ..........................even on the day I had septicemia, pulmonary oedema , heart and kidney failure .All I can say is 'thank you to my old housekeeper for seeing beyond my ex's opinion of me and calling an ambulance , which saved my life '

So, yes having to wait over 33 years to be able to stand up and actually say I do have a condition and its not all in my head was very hard going , and the day I was given the diagnosis was the most memorable day of my life , which is a shame when you think of it ,after all who wants to be proved right when it comes to such an awful condition such as we all have .

But in all not giving up and having to fight to prove I was right made me the fighter I am today ..............................a crazy woman .

Ami xxxxxxx

P.S sorry I haven't been about a lot but I keep having HUGE pots attacks and had to have my Doc out yesterday to inject me as I couldnt stop being sick and had blood pressure of 200 + /100+ ................ouch !!!!!!!! such a sore bum now :P:(:lol:

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I put no for misdiagnosed, but I went with no real diagnosis for a long time while they bounced me from specialist to specialist and ran test after test. I wonder how many people went UNdiagnosed for an extended period of time like I did, not exactly misdiagnosed, but in limbo nonetheless. (Actually, they technically "misdiagnosed" me as just vasovagal syncope before they caught on to the POTS, but I count that as a near-miss and not a true misdiagnosis.)

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I was initially diagnosed with dehydration due to the orthostatic hypotension. I was sent home from the ER after a bunch of saline and encouraged to drink more water since it was during the summer. After I started having full fledge fainting spells and the orthostatic symptoms during the winter the doctors started to suspect that something else was wrong. My mom did research on the internet and found information about dysautonomia and we flew out to Rochester, MN to go to Mayo and that is where I got my diagnosis.

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I was finally diagnosed with POTS at 18 (I'm 21 now) after a couple of years of passing out, etc, but I'm fairly certain I've been having symptoms since I was about 10. (One of the biggest things my mom points out-very dilated pupils. small, but a sign nonetheless). Before my diagnosis, I was diagnosed with vocal cord dysfunction and went to breathing therapy, diagnosed with various personality disorders, because obviously if they couldn't find anything wrong, I must be nuts. I had an endoscopy, went on an extremely low carb diet (which I hated), had a laporoscopy to look for endometriosis, went on various anti-psychotic medications (which made things worse) and there may be other things that I simply can't remember. I went from specialist to specialist and saw so many doctors I could probably not even name each of their specialties, much less their names. I got the anxiety diagnosis many times, as well. I do have an anxiety disorder, which made it difficult to tell people that I knew there was something else wrong. So like basically everyone else, I went through a lot before I got the right diagnosis.

Meg

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Hello everyone!

I was diagnosed Thursday of last week! (I'm 19) I've had various mild to moderate daily symptoms and what I had dubbed shower episodes since I was about 11. Over the past year and a half the bone crushing fatigue and other potsy symptoms had begun to take over my life (along with the normal chronic debilitating sicknesses, of course.)

Relentless researching began again once summer hit and I became house/often bed-bound. Never actually thought we'd hit on a a diagnosis... bought a home blood pressure machine to test another theory (NMH/ hypotension spells/ect) backed by my internist. After a couple days I read something about POTs on a NMH page. I was like "WOW! That sounds just like me!" Within the hour I started numerous poor man tilt tests and began hunting through these DINET forums. Pushed the internist for a referral to a cardio based on my POTs theory. The cardio didn't believe in "heart rate issues" so my mom and I e-mailed a doc listed off this website out of desperation and was accepted based on symptoms without a referral. Numerous tests packed into just a couple weeks and a positive tilt table finally landed me with POTs! Whew, validation feels so great after so much fighting! I just wanted to go back to all those docs and yell I'm not crazy or a hypochondriac! :)

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Hello everyone!

I was diagnosed Thursday of last week! (I'm 19) I've had various mild to moderate daily symptoms and what I had dubbed shower episodes since I was about 11. Over the past year and a half the bone crushing fatigue and other potsy symptoms had begun to take over my life (along with the normal chronic debilitating sicknesses, of course.)

Relentless researching began again once summer hit and I became house/often bed-bound. Never actually thought we'd hit on a a diagnosis... bought a home blood pressure machine to test another theory (NMH/ hypotension spells/ect) backed by my internist. After a couple days I read something about POTs on a NMH page. I was like "WOW! That sounds just like me!" Within the hour I started numerous poor man tilt tests and began hunting through these DINET forums. Pushed the internist for a referral to a cardio based on my POTs theory. The cardio didn't believe in "heart rate issues" so my mom and I e-mailed a doc listed off this website out of desperation and was accepted based on symptoms without a referral. Numerous tests packed into just a couple weeks and a positive tilt table finally landed me with POTs! Whew, validation feels so great after so much fighting! I just wanted to go back to all those docs and yell I'm not crazy or a hypochondriac! :)

Welcome Reef Diver,

Congrats to you for being your own adovacate and finding out what may be wrong with you at such an early age. For me the focus was Lupus and still is as another dx., but you are so right that, "validation feels so great after so much fighting!" I believe there are brochures here you can get to send to docs. That are about "Would you believe this persons has Dysautonomia?" If they don't I dreamed it and we need them. I've been meaning to get some to send to the former neuro docs that I left in the past or er staff that treated me rudely. For me my Pots is a full time job, taking little pieces of energy here and there. I wish we had one to educate the er or new docs when you as often I'm just too tired to talk and explain when I'm ill.

You've only just begun and I wish you the very best with your health and health care.

Blessings and love~

BellaMia~

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I found the last question on the poll rather interesting. I know that I'm probably one of few on this forum that feel this way, but I don't really think getting the dysautonomia diagnosis is the answer at all. For me it only raises more questions. Why is my nervous system reacting in this way?

I feel that our problems are caused by something else that isn't being diagnosed properly in the first place. God only knows what that is and it's obviously different for each of us since we all need different treatments in order to feel better. For me I was first diagnosed with adrenal insufficiency and when florinef didn't help, that's when I got the POTS diagnosis. My first symptoms of POTS/AI were in my early teen years shortly after I hit puberty.

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I found the last question on the poll rather interesting. I know that I'm probably one of few on this forum that feel this way, but I don't really think getting the dysautonomia diagnosis is the answer at all. For me it only raises more questions. Why is my nervous system reacting in this way?

I feel that our problems are caused by something else that isn't being diagnosed properly in the first place. God only knows what that is and it's obviously different for each of us since we all need different treatments in order to feel better. For me I was first diagnosed with adrenal insufficiency and when florinef didn't help, that's when I got the POTS diagnosis. My first symptoms of POTS/AI were in my early teen years shortly after I hit puberty.

Hi Dana,

I posted this poll originally and was very interested in the results of that question. You are right that a diagnosis of dysautonomia does raise more questions, but for many of us who were dismissed by numerous doctors or diagnosed with ridiculous things like "sort of an unconscious anxiety" (yes, this is a "diagnosis" given to me by a Neurologist!! :ph34r: ), the diagnosis of dysautonomia finally validated all of the symptoms I had been experiencing for a very long time.

It was such a huge relief! ...to be taken seriously. Not that there is anything wrong with being diagnosed with anxiety ...if that is the correct diagnosis ....but many of us knew that this was not the problem. So although the diagnosis of dysautonomia is not the total answer, I feel like we are at least finally on the right track instead of having our symptoms minimized or ignored.

Summer

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Hi Dana,

I posted this poll originally and was very interested in the results of that question. You are right that a diagnosis of dysautonomia does raise more questions, but for many of us who were dismissed by numerous doctors or diagnosed with ridiculous things like "sort of an unconscious anxiety" (yes, this is a "diagnosis" given to me by a Neurologist!! :ph34r: ), the diagnosis of dysautonomia finally validated all of the symptoms I had been experiencing for a very long time.

It was such a huge relief! ...to be taken seriously. Not that there is anything wrong with being diagnosed with anxiety ...if that is the correct diagnosis ....but many of us knew that this was not the problem. So although the diagnosis of dysautonomia is not the total answer, I feel like we are at least finally on the right track instead of having our symptoms minimized or ignored.

Summer

I definitely understand where you are coming from. I think a lot of us go through what you've described because this illness impacts younger people and we are told that we are too young to be sick. I purposely avoided doctors for a very long time because of all that nonsense.

The problem I have with the dysautonomia label, like other catch-all illnesses (CFS, Fibromyalgia), they start to associate every single symptom we experience with that label rather than a symptom of another problem. Because of this lumping together of symptoms, I think that will further set us back with other UNdiagnosed conditions. We all might have dysautonomia, but maybe we are also nutritionally deficient, anemic, have sub-clinical hypothyroid and/or we have a rare genetic disorder. If the doctor simply puts the dysautonomia label on us and let us go on our way without testing for the above conditions, we essentially have been misdiagnosed. I hope what I am saying makes sense. There are a lot of causes for POTS-like symptoms that I think doctors should be checking for in every single person they dx with POTS or dysautonomia.

This is just some food for thought! :P

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interesting i think i have had symptoms most of my life looking back .. always been a struggle but coped pretty well, all of my symptoms were i thought normal, growing pains and all that, the only unusual thing that happened to me was everything used to go black when i stood up everytime, and i would hold on to somethign untill it righted itself, but i had this only in my very early teens, always felt rough, no vitality .. but the past three years symptoms have been very bad, constant tachy and nausea and all of the other stuff ... i was diagnosed last year after having severe symptoms for three....

i recently read a thread somewhere on this forum about Ansa test !.. i just google it and first the thing to come up was a DR Garry Murry talking about ans ... best to google it and hear what he says for yourself, (sorry i did not know how to paste the link) ... it seemed to tie in with having symptoms life long, an acumulation of symptoms ...

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