At What Age Were You Diagnosed With Dysautonomia?

[summer]

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!

Yes, Dana, what you're saying does make sense, although I would not go as far as to say that ignoring other health issues makes the diagnosis of dysautonomia a misdiagnosis. As with any illness (ie. MS, parkinson's, diabetes), other medical conditions are well known to co-exist with dysautonomia, or may even contribute to it. Not treating these other issues, or contributing factors would by negligent on the part of a doctor. The diagnosis of dysautomonia should be a starting point, not the end of treatment.

Although, I think you're right that it can happen ....and dysautonomia patients can allow it to happen by deciding that every health issue is just another crazy dysautonomia symptom. I'm glad you posted your opinion on this. It's a very interesting point to consider.

Summer

[Nikki]

I was diagnosed with POTS in October of 2009, so I was 21.

When I was 12 years old, I passed out in school (only time I ever have too..so we didn't think anything of it since all the doctors said it could just be a one time thing) but I hit my head off the chalk board and a hard floor (it happened in the art room)..Ever since then I'd complain about seeing spots and dots, and being light headed but for the most part I could still do things I wanted to do. (I'd still go shopping, on long walks with my family..do crazy cardio workouts for about 40 minutes or so every night..things like that).

I'd say in October of 2008 is when I started getting worse..I'd have less and less good days and started having almost constant dizziness to the point where it was hard for me to go places, and even just get around the house at times. In October of 2009 I had one of the worst weeks ever with my dizziness, feeling sick..and getting chest pains (which I never had before). I went to the ER and my heart rate and blood pressure was all over the place..I would just sit up a tiny bit and the machine would start beeping like crazy.. I had a tilt table scheduled so they just sent me home and told me to rest. When I had the tilt table, they told me it was POTS and said that'd it'd take a long time to figure out something that helps, and it definitely has been.

I'm not sure when it started exactly. I thought it was when I hit my head, but my cardiologist thinks it happened from a virus around October of 2008..The only thing I can think of was that my fiance had pharyngitis (a bad case of it) and afterwards I did have a bad cough..but I don't know if it can be caused from something like that. I definitely had problems with dizziness, but it wasn't this bad until around then..So I'm starting to think it could've been from that.

[Janey]

I first developed symptoms at 15 when I started getting really ill after lunch at school. I can only tell now that it was low BP due to blood pooling after my lunch. I then started rowing seriously and competitively. I won a competition on the coldest day of the year and got stuck in a boat in my rowing slip in the freezing cold on the river for an hour after I'd won because no boats could get to me. After that I had various "malaises" (basically like POTS attacks) which seemed to go on for months. Doctors tested my blood count and did the blood test for glandular fever but couldn't find anything.

It went away for a while and then when I was 19 the malaises came back periodically while I was at university. I thought it was lactose intolerance so stopped drinking milk. It went away a little bit but my health gradually declined.

At age 22 I went to India with my current boyfriend and contracted an infection from a puppy on the beach and started experiencing serious heart and blood pressure fluctuations and severe stomach and intestinal problems. I got back from India and was told I had IBS. I suffered with this for 3 years, going back to the doctor but he just ignored me. I kept looking things up in the internet and finally typed "low blood pressure and nausea" into google and came across DINET. I find the relevant doctor (Prof Mathias in London,) wrote to him and he got me in to see him.

I got diagnosed last year with EDS III, POTS and Gastroparesis, and having a REASON, finally, for ten years of illness has really changed my life.

[lmt033167]

I first started fainting at around age 9, but didn't get a dx until age 42. I've been told over the years it was nothing, I had low blood sugar, low bp, low platelettes [sp] anaemia. I was dx'd with NCS, OI, moderate obstructive sleep apnea and malignant heart arrythmia's....the list goes on.

Jan 2009 I was walking with my family at night and had what felt like my heart stopping and I blacked out, happened another time that week, so I quit walking for a bit, then we started back - it didn't do it again so we kept walking. Before this happened I had walked & ran for most of my life off & on. Fainting, palpitations and CP were a thing I just learned to live with and was "nothing" since my drs didn't think anything of it.

In August 2009, I had a TTT and RF ablation (very frequent pvc's) that showed when I faint, my heart stop and my bp tanks. I have something wrong that makes me go into nonsustained and sustained polymorphic V-Tach - they still don't know why and I've had many tests to find out the cause. I had a pacemaker/icd implanted because I went into vfib during my EPS.

My BP is like a crazy rollercoaster ride daily - if I try to do something - my bp won't go up to reach the point it needs to be to compensate for exertion or activity and it will go up, then it will drop to nothing in a blink with no warning.

Something showed up in my exercise treadmill about my QRS segments being off and my echo showed I had several different things wrong with my heart - I developed cardiomyopathy from my pvc's, I had mild MVP & TR, LVH. I've had sob, body aches & pains and joint achiness nausea, fatigue for as long as I can remember, heat intolerance - no sweating and cognitive dyfuction started last year.

I started having neuropathy in my left leg & foot last year around the same time that they told me may have been due to the amount of pvc's I had and the loss of blood flow/oxygen. It continued to worsen so I went to a neruologist who confirmed neruopathy; who also suspected an AI. It spread to my hips, both legs, left hand/arm (have burned myself from cooking) right eye started twitching and tremors, now in left eye also. The pain in my legs & hips go from tingling sensations to excruciating pains daily, twitching and numbness in my legs sometimes makes me trip or fall; my feet sometimes swell 3 or 4 times their normal size and makes it difficult to stand or walk.

I'm still waiting to go back to my neurologist in June for more testing & see what else she thinks is wrong. The more I think about it, the more I wish I had gone to Mayo last year as suggested by my cardio instead of going to different doctors around here, I may have had more answers by now.

[hensor]

I have had symptoms that I now reckon to be PoTS for as long as I can remember. Always having to stand up slowly and hating the heat - I used to say it made my brain shut down, and later, once internet existed that "my normally broadband brain goes dial-up". But it wasn't disabling until a few years ago. It is hard to say exactly when symptoms started cranking up because I also have EDS which was only diagnosed in about 2007, after years of problems which I honestly thought were 'normal'.

Anyway, I then collapsed at work in Jan 07 and they were pretty certain I'd had a stroke (shadow on CT scan) but decided it was psycological when the MRI came back clear. They did mention a tilt table test - but dismissed it cos I wasn't old enough for it to show any issues (I was 24) So I after several hospitalisations etc I was sent firmly down the psych route on the basis that I wasn't depressed! It took over 9 months to stop being effectively bed-ridden.

Fortunately I then saw an EDS/HMS specialist who thought I was sane, refered me to autonomic testing at Queen Square, London, and hey presto! PoTS diagnosed in late 2007.

I think part of the problem was that I have never fainted, and was so used to 'just carrying on' that I didn't know what I should be telling the Drs. I had convinced myself I didn't get palpitations despite my heart rate reaching 160 just by standing up. My main symptoms look like I am drunk. Very drunk.

Midodrine, propranolol, salt and compression stockings later and I am now able to function (ish)

I think I was lucky in that it was only just over a year from becoming very disabled that I got diagnosed. thanks to the hypermobility clinic at UCH and Prof Mathius and team at NHNN.

[heissovereign]

I had mild symptoms at birth, like breathing and digestion issues. Then at six I started with the fainting. And it has been progressing since. Docs told my family nothing was wrong. I was finally diagnosed last year at 23 with ncs and sinus tachycardia, and I also have mild regurgitation in 3 of my valves. Just last week was diagnosed with IST with sinus bradycardia, and PAC's. And poor functional status. As a teen they told me it was just anxiety.

[tachyfor50years]

I was only 5 years old when I 1st passed out; I was diagnosed at age 50 after I showed an article to my cardiologist from Mayo clinic.

All those years, I have never lived a symptom free life, even one day.

[JeWareGT]

I used to pass out as a baby whenever I was startled, but I outgrew that until I was 16 which is when my symptoms really developed. Finally got my dysautonomia dx at 26, after 10 years of going to lots of different specialists who all told me it was anxiety, etc.

[k&ajsmom]

Diagnosed at age 6 with ncs secondary to autonaumic dysfunction then again at age 31 with POTS dysautonomia.

[looneymom]

My son caught a virus over Christmas vacation when he was 10 years old. He kept going down hill for several months. He was checked for mono and other viruses. Symptoms kept getting worse until he eventually could not walk on Labor Day 2011. He was diagnosed by a cardiologist in October 2011 and MAYO confirmed diagnosis in December 2011.

[dpeeps]

My symptoms started around puberty. This sounds strange, but many of them... I never realized that they were not "normal". Major, major flare last year at age 47. I thought I was dying I was so sick and was in the ER a couple of times. It wasn't until the Cardiologist started asking me all these crazy questions where my answers were mostly "yes", that I realized that what I had been experiencing (in mild form) all my life was not normal and could be explained by dysautonomia. I had never even heard of POTS when he told that I probably had it (confirmed by TTT a week later).

[gjensen]

I am a minority in this crowd, being an old man.

I lived 40 years with excellent health. I literally never went to a doctor in my adult life. No check ups or anything. I rarely ever got sick. Went 8yrs without missing a day of work because of illness. I am not certain, but I may have never missed work because of illness until this.

Two years ago I did have a near syncope incident while I was driving. I do not know if it is related.

About 16 months ago, I began to know something was not right. I would get tired easier, and climbing stairs was harder than it ever had been. I knew something was not right, but I kept going.

Gradually my anxiety level began to build. I was running a challenging project, so I chalked it up as the job was getting to me and kept working.

Then about 11 months ago I began having trouble swallowing and it progressed until I was having trouble getting anything down. I finally went to the doctor and began chasing my tail. I was diagnosed with GERD and put on PPIs. I did not tolerate them well, and they made a mess of my digestion.

The whole time I was going down hill. I had more and more pre syncope spells, and the symptom list was growing and growing. I started getting the anxiety speeches etc. I did not know what was wrong, and no one else knew what was wrong.

I bought myself a HR monitor, and a BP monitor. I saw the problems myself, and started trying to figure it out. Then I run across Dysautonomia and POTs. I had never heard of them before. By this point, I was in pretty bad shape. Lost almost 20% of my body weight and I am a slim person. I was having trouble just getting to the doctors.

Finally, I brought some printed information to a doctor and he referred me to a cardiologist that put a HR monitor on me and he confirmed what I had told them. My HR had gotten to 180. Then came the TTT. I had an increase of 85 BPM and dropped 40/30, but they said it was negative. Guess because I did not faint. So I insisted on a referral. Then I went to Duke where it was recognized and diagnosed, but it was not clear how to approach it. They (he) gets it now, and is talking about an actual treatment plan. He had me try some things that did not work out real well.

Duke wanted to dig into causes and has done that. The testing has been extensive and a lot more is coming. Coming after me this doctor will be much more prepared to deal with POTS. He wants to know why. Duke's short coming is that they do not have a subspecialist and the autonomic lab. Otherwise they have been great.

Problem is that all of this is still progressing.

Like one poster said. POTS is just another step for me. There is more going on than POTS alone.

[JuneFlower]

My daughter was diagnosed when she was 12 with POTS but is has progressed quite a lot. She was 1st diagnosed with migraines and anxiety and then cyclic vomiting syndrome. She has missed 110 days of school so far. We are hoping these new blood pressure meds will help. She can't get out of bed without feeling faint or passing out.

June

[BSmith85]

27 (will turn 29 tomorrow) had been experiencing symptoms since 17. Pretty much a self diagnosis after years of tests, tests & procedures. Noticed the drastic BP changes with positional changes was a recurring theme, searched online until I found something that met nearly all my symptoms & scheduled an appointment with a specialist 2 1/2 hrs from home who confirmed my suspicions.

[rubytuesday]

I'm not sure if I was mis-diagnosed or if things progressed over time. Mine began maybe once/mo. with near syncope. The third episode was much worse and landed me in the hospital where I underwent a gambit of cardiac tests and an MRI/MRA of the brain and blood work to rule out other things. All but a B vitamin deficiency were normal. Then on to a tilt table test--never had syncope but was in pain and the room was cold (hard to re-create a warm relaxing environment under those circumstances) and a 24 hour event monitor that later became the 30 day event monitor (that I requested from the get-go to save healthcare dollars especially considering at the time my symptoms were erratic). The monitor was into its 2nd week when the cardiologist called telling me he found the problem--some tachycardic events (adding neurocardiogenic syncope) that he prescribed something for. Hot humid summer followed and my episodes only increased despite eating salt and modalities suggested and fluids, fluids and did I say, fluids? By the next spring, (1 year) my cardiologist told me he felt I had POTS (as did my PCP) and had my tilt table test repeated using same hospital but different cardiac physiatrist. Never fainted with that test either but that specialist told me my heart rate and blood pressure changes met all the criteria of POTS. He added flourinef (but forgot about potassium which went critically low) and I was again to eat/drink salt. Still no improvement and hot humid summer followed as condition didn't respond and meds were changed and adjusted. As spring rolled around (2 years) the cardiologist was so concerned that he referred me to a specialist 'with this sort of thing' (now my cardiologist still told me POTS but never discussed dysautonomia). About 7 months later and the condition to the point I thought by the end of another hot, humid summer that I was going to die before seeing any specialist, my cardiologist got me in to see him sooner. It was he, 33 months later who explained to me about my orthostatic hypotension and the autonomic nervous system failing me.