Hi,

I was diagnosed with POTS this morning during a tilt table test. I was doing some research, as I had never heard of it before, and came across this site.

I was wondering if anyone out there with this diagnoses experiences chest pain and hand cyanosis.

My symptoms include dizziness, near syncope, migraine headaches, cyanosis of hands (feet and lips at times), nausea, chest pain, blurred vision. I have been feeling this way for a month and no one could figure out what was wrong; I was starting to think that I was crazy. I saw a cardiologist 2 weeks ago and had a bubble echocardiogram last week which showed a PFO with right to left shunting. They repeated the bubble echo today during the tilt table test and did not see any shunting although the tech said he could not get a good view of the heart as I was flat on the table.

I was started on fludrocortisone and told to increase my salt and fluid intake.

I am not convinced that this is the correct diagnosis as I feel awful no matter what position I'm in. My blood pressure remained stable during the test but my pulse went from 80 to 128 and stayed there for the duration of the test.

Any feedback would be appreciated.

Tish

Hi Tish

Welcome!! You will find that the people on this forum are VERY knowledgeable and VERY supportive. We all understand the strange symptoms and how debillitating they can be. You are fortunate though that you were diagnosed so quickly!!!

Your symptoms definitely sound like POTS to me (in my humble opinion). What is strange is that you can feel this way 24 hours a day, not just when standing. I'm not sure exactly though...

I would recommend searching on the internet for 'postural orthostatic tachycardia syndrome' (POTS ) There are many articles with good information on it, including symptoms and some treatments.

I am still not diagnosed but am working through the doctors so they can confirm what I believe (and my tilt table test confirms) that I have POTS. Its been almost 2 months for me of severe symptoms, including chest pain. In fact, there is a post on the main discussion forum all about chest pain because many people have it.

I believe that there is also a common symptom of cold legs/feet and hands. While my feet don't turn blue..they are definitely 'frozen' alot of the day.

Keep reading up on everything you can. And if you feel like sharing, share your dr and general location because people are always looking for good doctors who are knowledgeable of POTS.

I found a confusing statement in my previous post.

What is strange is that you can feel this way 24 hours a day, not just when standing. I'm not sure exactly though...

I meant to say I'm not sure exactly WHY though... It is something that everyone here experiences if feeling their symptoms in varying degrees for varying lengths of time. So to feel it 24 hours a day is not uncommon. Just annoying

Your symptoms sound like POTS. I had lots of cyanosis during my initial acute onset of symptoms. I could see my legs turning blue when I stood up to go to the bathroom...sitting there too...blue.

The thing with the autonomic nervous system is it takes time for the meds to work and calm things down. Usually there will be periods of improvement....different meds can be tried until you and your doc find what works best for you.

It may sound cliche' but listen to your body. Do not push yourself if you are having symptoms...rest and take care of yourself. My magic three things are cool, dark and quiet.

Keep posting. Keep asking questions.

Folks here understand.

Welcome to the forum.

I am another one that is still working towards diagnosis, but have found this to be a great place to learn. I think that you will find it mentioned repeatedly in POTS information that there is a standard for diagnosing POTS if heart rate increases 30 beats per minute or more during tilt, which is a criteria you clearly met. However, you will also find that this is the tip of the iceberg as far as the signs/symptoms that can be experienced as part of this syndrome.

Thank you all for your input; it's really nice to be able to talk to people who can relate.

FYI, I live in CT but do not have a specialist in this area. My cardiologist is very nice and admitted he knows nothing about it (except the research paper he referred to when explaining it to me); an APRN made the diagnosis (she conducted the TTT). If anyone knows of a specialist in CT, NY, NJ, or MA, I would welcome any recommendations as I have not been successful in finding one. There is one at Yale but he is a pediatrician.

The reason I believed positioning placed a part in this is that I am a nurse and by definition orthostatic usually refers to body position (usually vertical). I have been reading since I was diagnosed and have come to believe that this is the right diagnosis.

Does anyone suffer from headaches? Nothing I take seems to work. My face feels tingly at times; I keep thinking I'm having a stroke. That plus the constant chest pain is very unsettling.

Also, do you drive? I am afraid that I will pass out so I have not driven in 4 weeks. I have 2 young children and this is taking a toll on my family. My poor husband has been great but it is starting to take a toll on him. I forgot to mention that I had a lumbar fusion last April; it took 4 months for me to recover. I was fine until February when I started with pain and numbness in my right arm and leg. I think that's when all of this started. Sigh...
I am 37 but feel about 107 right now. I just want to feel good again.

WantMeBack, did you have the TTT? I'm sorry it's taken them so long to make a diagnosis. Not knowing is always the worst part.

Thanks again for your support.

Hi Tish
I live south of Boston and see Dr. Peter Novak at UMASS Worcester. He's a neurologist there and does autonomic testing.

Thanks dsdmom. That is relatively close to me. I will try calling him.

Thank you Rosie!

How did they determine that sleep apnea was the problem? Were you having trouble sleeping? I was always able to fall asleep without any problems but lately, I have a hard time falling asleep because my heart is pounding in my chest, my head hurts, and it keeps me from sleeping. I also noticed that I wake up more frequently. Last night, I woke up screaming--gave my poor husband a terrible scare--because I felt like I was falling. I was literally looking for a place for my feet to land and couldn't. I screamed because my mind believed that I was falling when I was in bed. Weird!!

Keep in touch.

Hi Tish - i did get a tilt table done last month, but the dr who read it did not read it for anything other than NCS (neurocardiogenic syncope) which means my blood pressure did not drop and i did not faint...which I never said i thought that was the problem. my problem is POTS which is the heart rate increase and associated symptoms. my tilt table proved that.

i have only had this severely for 2 months - started with the heart pounding really really bad and lightheadedness and exhaustion. took a month to completely rule out the heart as the cause. now i am seeing an endocrinologist to rule out his stuff. i just got referred to a neurologist too because my right leg started doing a tingling, heavy, kind of numb thing.

as i meet with these dr's i have or will share what information i have to date on all my tests and my opinions. while my cardiologist was 'nice', she wasn't very knowledgeable of this stuff and i think she thought i was nuts (got that look alot). so i was intimidated to push things too hard.. but my new dr, the endocrinologist, is awesome so far after 1 appt. he totally listened and understood the impact this has on my life.

does your chest pounding happen more at night? mine does - when i'm trying to sleep. when it is super strong, it keeps me awake like it seems it does for you too.

Hi WantMEBack--I can relate to the heart pounding at night. That is exactly why I am awake despite feeling tired. It feels like it's going to beat right out of my chest. I'm not sure what's worse, my chest pain or the constant pounding in my head.

As far as the cardiologist not knowing, mine didn't either. I was fortunate that the APRN conducting the TTT is studying for her boards and is well aware of the condition. She mentioned POTS as soon as the table was upright and no one in the room responded. My guess is that no one knew what she was talking about. My cardiologist admitted to not knowing much about it but referred to some literature that the APRN gave him. That is why I am looking for a specialist. This condition is debilitating and I want to get back to my normal life.

I also have had tingling and numbness in my right arm and leg. I read somewhere that there could be denervation associated with this. I have seen my neurosurgeon and a neurologist recently but they were not focusing on my POTS symptoms, they had tunnel vision and focused only on the pain and tingling in arm and leg. That's the problem with such specialized medicine, you need an army of doctors to figure out what is wrong.

Let me know how it goes with the endocrinologist. I have been diagnosed with hypoglycemia (about 10 years ago) and now I'm beginning to wonder if it's not all tied in to POTS.

Hi Tish - Welcome to the forum - it's been an absolute blessing for me to talk with people who truly understand what I am going through. Having POTS is truly an ever changing journey with so many weird symptoms and the process of correct diagnosis and treatment can be very challenging. I live in Northern Delaware (right near the NJ border)which is a bit of a hike from CT but at least it's on the same coast. I have a wonderful EP cardiologist. His name is Dr. Henry Weiner. Just in case you can't find anyone closer....He was the one to diagnose my POTS/OI/IST and has been just wonderful with me and my case...

By the way, you mentioned your face getting tingly. That's a weird symptom I have had for many years when my blood pressure gets out of whack (low or high). Sometimes it's actually painful like a bunch of needle sticks. It will also happen sometimes before I start to pass out (again probably a blood pressure issue). I have also had tingling in my arm and leg after a pre-syncope episode....

Best of luck to you....

Thanks Rosie. I am desperate for answers and will talk to my doctors about the possibility of apnea. My headaches are unrelenting and making it difficult for me to function. I am so glad that you are feeling better.

Trebleclef, thanks for sharing the name of your doctor. My parents live in NJ so it wouldn't be too difficult for me to get there. I am trying to find someone locally just for convenience but I am not opposed to travelling if it means getting the best care. I can't believe I haven't found anyone at Yale. There seems to be a shortage of specialists in this area.

How long have you had OI/POTS? Did they use anything other than TTT to confirm your diagnosis? Is this ever going to go away? Do you work? I am working from home but have a hard time concentrating and it makes my headaches worse because I am on the computer a lot. Everyone at work is excited that I have a diagnosis because they think it means I'll be back soon. I just don't seem to be getting better. They have been very supportive but I don't know how long they will hold my job. I was out last year for 4 months for my lumbar fusion.

So many questions....Sorry!

Take care!
Tish

Welcome Tish,
Its a shame we all need to meet under these terms, but you will find so much help and so many here understand. I have been fighting my symtoms, since DX almost 7 years. It's no fun and can get to be very depressing at times. That's when you really need to talk to others. Ihave all the symptoms that you experience, in varied degrees and durations. Just when one thing leaves, something else pops up. What Fun!
I haven't driven by myself in so long. The only time I will is for very quick trips, only when I have no symptoms. I guess that isn't much. I don't feel safe behind the wheel, for others.
As far as the racing heart, I was put on Toprol XL, and that helped greatly. I can't do any types of corticosteroids. It makes everything worse, and I go into convulsive syncope. Maybe if you don't get results, you could try change of meds. It's all pretty much a guessing game as to what will work for you in the beginning.
Hang in there, were here for you. suzq

Hi Tish - I also work from home on a computer (was telecommuting prior to getting sick). My work has been very supportive so far and this is the first week in 2 months that I've worked all 5 days and nearly a full day each day. (I used to work 50 hour weeks before getting sick, now I'm down to about 15-20 hrs a week until this week).

I've had to adjust how I sit - I sit on a reclining couch with a wireless keyboard/mouse and my papers next to me and on makeshift desks (coffee table, etc) around me. I found that the reclining helps me last longer.

I don't have headaches often, but I get the brain fog. The more tired I am, the worse it is. So bad this Tuesday that I forgot what I was talking about mid-sentence. They know I'm sick, they know my opinion that this is POTS. But one person actually laughed when I had to ask had to ask what we had been talking about. Didnt mean to be hurtful but I was on the verge of tears because of frustration.

It is great you got a diagnosis - its a start because you can begin addressing your symptoms. But like everyone says, different things work differently for different people. Hopefully you can find the root cause of your headaches and treat the cause so you can function better.

Also, I found out this week that stress really aggravates my symptoms. I kind of knew that from work type stuff (they removed the most intense, stressful work from me within 2 weeks of me being sick) but I had some stress with my daughter and my heart went wacko and I started feeling really sick. The next day...a 'bad' day symptom wise. So, if you can avoid stress, try to...

My humble opinion - go to NJ and see that dr so you can get moving on treatments as soon as possible. Not to scare or worry you, but everyone seems to have varying degrees of normalcy but it doesn't seem that many people ever get their true lives back. (aka want ME back - I want my life back). I just want to be able to get up and do whatever I want to do whenever I want to do it..LOL.

My fingers are crossed for you!!