15 years of misdiagnosis: My story.

[Midori]

After 15 years of issues in multiple systems of my body and so so many doctors I believe that I have POTS syndrome.   I will be going to an internist/ cardiologist this week to seek diagnosis and hopefully get an appointment with a specialist this year.

My progression:

-At 18 I developed IBS.  It was an odd form because it really was just the time it takes for me in the bathroom is very long (15-25 minutes).  I had a colonoscopy done etc and they did not find any abnormalities.  So life went on.

- In my early 20s I started to feel like what I thought was "stress" in circumstances that would never have stressed me normally. Felt like my system was overreacting.  I also started getting fatigue and brain fog.  I started to think I had social anxiety as when standing talking to people made it worse.  This was a surprise to me because I had been an actor when younger and never shy in social situations. But this kind of stress reaction in retrospect due to tachycardia had a cyclical affect.  I would feel stressed and then believe the stress was stemming from that social situation which then would make me even more stressed in those situations.  Like a vicious feedback loop.

- I was pregnant in my late-20s. After the birth of my child my symptoms got much worse.  I was also simultaneously VERY Vitamin D deficient (I was a 6) and was drinking 3 coffees a day for the fatigue. Little did I now the coffee and Vit D deficiency were putting all my symptoms into overdrive.  I couldn't think straight. My brain felt like it was white-washed. I had a hard time finding words.  I would shake.  I noticed if I was holding a cup my hand would randomly let go occasionally.  I also would have these "attacks" that would last for weeks at a time where i felt like my body was in CONSTANT fight or flight mode. I felt so ill.  My head felt so much pressure like it would explode and I cried because I actually felt like I might have a stroke or something it was that much constant pressure in my head. I was short of breath.  The only thing that brought relief: Lying horizontally.  Not yoga. Not meditation. Not tea. NOTHING. Except lying down.  I now understand that that horizontal position was probably the only thing returning my pulse to normal.

- I gave up coffee and got my vitamin D levels up to normal and it cut down on that very strong 24 hour fight or flight reaction but I can still get it around my period. Instead I just have a low ever present hum of a stressed feeling I know now is my tachycardia. 

When my Vitamin D has slipped I can feel it and blood tests have confirmed it.  I can feel the symptoms creep back as well as with coffee or any caffeine.  

- I tested positive in my early 20s for Lyme disease except for one band. whether this is the root cause I am not sure.  I did not pursue this when I felt better with Vitamin D and giving up caffeine. I also had Parvo Virus which can cross react with Lyme disease so did not feel confident in the diagnosis at the time.

-But years went by and slowly other symptoms have crept in.  I have neuropathy in my lower legs in the small nerve fibers as it only affects my sense of temperature.  I also get a phantom itch (neurologic itch) in the soles of my feet.  I've been to a dermatologist.  There is nothing there dermatologically.  I was told that my neuropathy and feet were caused by compression of nerves from toilet sitting, but now I'm not so convinced as I can see small nerves are affected with POTS.  It also seemed very odd to have this kind of issue in my late 20s when diagnosed.  Additionally I have muscle spasms at night in my calves and restless leg syndrome sometimes. I had multiple MRIs for this to make sure what the source was.

-in last 6 months I having trouble not feeling hot all the time when everyone is freezing. 

-I have pre-diabetes despite being very thin and small and more digestive issues creeping in.  I've become more lactose intolerant and am not processing protein as well as I should. I took a protein enzyme during meals that would typically bother my stomach and it eased my discomfort so I think I am now lacking in some enzymes.  

- Last year following an episode of shortness of breath for a whole week I had a focal seizure. I now wonder if the POTS had something to do with this.  The doctors could not figure out what caused it.  I had multiple MRIs to rule out stroke and all arteries etc were good.  They also gave me an MRI to rule out MS and I had no lesions.  

- Additionally, as per usual of POTS, I have unusual hormonal issues.  While my levels appear normal I have symptoms of PMDD withOUT the psychological involvement (no depression etc) although I do get fight or flight feeling around my period which I now understand is tachycardia.   I will have terrible PMS symptoms for WEEKS at a time before my period.  When I looked into PMDD, the hormone levels were NOT different in women with that, but the WAY the body USES the hormones is wrong. This I found intriguing.  The last three months I have taken MACA and this has taken away my PMS symptoms by 90% which is amazing.  Maca also works by not changing hormone levels and the way in which it does work is unknown.  The only symptom that seemed to creep back was tachycardia I believe.  Each month I had to up the dose to keep it down but that is obviously not sustainable.

 

Recently I took a B-vitamin Complex that gave me what appeared to be a niacin overdose.  As that level of niacin has never bothered me before I believe the vitamin company, like so many, did not regulate their levels properly.   I turned bright red for an hour or two and then had a feeling like my heart rate was going down rapidly (at the time I felt like something was shutting off and it felt like "death" was the only way I could describe it).  A seemingly horrible situation that landed me in the hospital was the impetus for my suspicion of POTS.  Without that experience i may never have known.  I was hospitalized and given an IV, this seemed to help after the multiple "attacks" that messed with my pulse.  I also had balance issues, weakness and lightheartedness that kept me in bed for days.  Looking back I understand why.  Niacin creates vasodialation, hence the flushing affect.  As I believe POTS is a dis-regulation of certain vascular constriction and dilation the vitamin simply made my system haywire more than normal.

After that, for fear something was very wrong though and wanting to understand what was going on, I bought a blood pressure cuff and a pulse thing that tracks afib or arrhythmia.  I started taking my pulse all over the house doing different things and what I found was that from lying down or crouching down to standing brought with a wild change in pulse. My husband tried it- barely a change at all.  My BP has always been even for 15 years: about 110/70 so I never suspected a thing. At doctor appointments i was always seated. 

 

With this I finally had a physiological explanation for my "anxious" feeling in my chest, fatigue brain fog etc i've had for a decade and a half. Those feelings correspond to the numbers I see.  I would feel short of breath and like I was panicked for over a decade. I knew that sitting or lying down alleviated it but i didn't know why.  This oddity led me to research and here I am now.  Staring at a tapestry of symptoms POTS encompasses, each something I've had for 15 years.

After 15 years of fighting for my health and being my own advocate researching the WHY behind system failure after system failure the next fight I have ahead seems overwhelming but knowing the core of the issue now that possibly unites the symptoms is comforting.  I just started graduate school though, and the idea of also reading medical textbooks in my spare time on POTS (I have a great love of biology and science which helps) makes me feel a bit down.  I am a mix of feelings of relief and weariness.  

 

Anyway, thank you so much for reading.  I hope that this story finds someone else and helps, so their route to diagnosis isn't as long as mine has been.

[Pistol]

I am very sorry for all you have been through in all these years! I know how it feels to finally find an answer. Way before I ever even knew about POTS (or even had my worst symptoms) I always thought that one day there would be an explanation why I felt so bad doing what others did so naturally. When I became severely symptomatic I started to research my symptoms online and finally came across POTS - and I knew. It all made sense - all of my life I had it and just always compensated! Until my body said: NO MORE! --- Once I found a knowledgeable specialist it felt like the world makes sense again because he knew what I went through and had an explanation. -- I very much wish for you that you also will find that physician that shines a light on your hidden reality of dysautonomia! 

[bombsh3ll]

Hi Midori, I'm sorry you've been through so much and for so long. 

I think 15 years ago it would probably have been much harder to find relevant information online, and the gradual appearance of more and more symptoms over time probably also confounds the difficulty in identifying what may be going on.

I was the opposite - very sudden onset, researched symptoms and came up with POTS diagnosis myself within 3 days by matching symptom presentation, demographic (young female) and orthostatic pulse changes to the description of POTS. Technically diagnosis requires symptoms to be chronic for 6+ months, but time proved me right and after 3 years fighting for a formal diagnosis I got to see Professor Newton in Newcastle UK who diagnosed me based on symptoms and monitored stand test. 

I think it would be really helpful for you to seek out someone who specializes in autonomic disorders and present them with your history, own orthostatic readings and suspicion of POTS. I really recommend being direct about your concerns and the condition you want to either rule in or out, in order to get the best out of your appointment. 

I am in the UK and had to fight to be taken seriously, find a suitable specialist myself and pro-actively organize an out of area referral and funding. 

The good thing is that there are a number of treatment options if you are conclusively diagnosed with POTS or other autonomic disorder, which could really transform your life. 

As yet I haven't found anything either particularly effective or with sustained effectiveness, but I am still looking and having a formal diagnosis is very useful, as well as feeling validated that no you are not crazy and yes you do have a recognized physical disorder. 

Best of luck,

B x

 

 

 

[Midori]

5 hours ago, bombsh3ll said:

Hi Midori, I'm sorry you've been through so much and for so long. 

I think 15 years ago it would probably have been much harder to find relevant information online, and the gradual appearance of more and more symptoms over time probably also confounds the difficulty in identifying what may be going on.

I was the opposite - very sudden onset, researched symptoms and came up with POTS diagnosis myself within 3 days by matching symptom presentation, demographic (young female) and orthostatic pulse changes to the description of POTS. Technically diagnosis requires symptoms to be chronic for 6+ months, but time proved me right and after 3 years fighting for a formal diagnosis I got to see Professor Newton in Newcastle UK who diagnosed me based on symptoms and monitored stand test. 

I think it would be really helpful for you to seek out someone who specializes in autonomic disorders and present them with your history, own orthostatic readings and suspicion of POTS. I really recommend being direct about your concerns and the condition you want to either rule in or out, in order to get the best out of your appointment. 

I am in the UK and had to fight to be taken seriously, find a suitable specialist myself and pro-actively organize an out of area referral and funding. 

The good thing is that there are a number of treatment options if you are conclusively diagnosed with POTS or other autonomic disorder, which could really transform your life. 

As yet I haven't found anything either particularly effective or with sustained effectiveness, but I am still looking and having a formal diagnosis is very useful, as well as feeling validated that no you are not crazy and yes you do have a recognized physical disorder. 

Best of luck,

B x

 

 

 

Thank you so much for your reply. And yes I think your right. When it started there really wasn't any information on it really. Once I stumbled upon POTs a year or so ago but I thought it had to do with BP and dismissed it as mine was always good.  Little did I know it pulse and that mine was crazy! lol  And yes, it will be so SO nice to finally have validation.  

[Midori]

21 hours ago, Pistol said:

I am very sorry for all you have been through in all these years! I know how it feels to finally find an answer. Way before I ever even knew about POTS (or even had my worst symptoms) I always thought that one day there would be an explanation why I felt so bad doing what others did so naturally. When I became severely symptomatic I started to research my symptoms online and finally came across POTS - and I knew. It all made sense - all of my life I had it and just always compensated! Until my body said: NO MORE! --- Once I found a knowledgeable specialist it felt like the world makes sense again because he knew what I went through and had an explanation. -- I very much wish for you that you also will find that physician that shines a light on your hidden reality of dysautonomia! 

Thank you so much for your reply. And yes it was only when I too had those severe symptoms recently and came across POTS online did i know.  I'm hoping once I talk to a specialist I will understand what has transpired over the last decade and a half and it will make sense finally.