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Where do I start? I have been ill since having a total hysterectomy in 2008. I have in the past year been visiting the GP with loss of appetite, early satiety and weight loss. I felt like I was dying inside and that is how I explained how I felt to the doctor.
I was sent for numerous blood tests, x-rays, ct scan, endoscopy, colonoscopy and a short synacthen test which have all come back normal. The GP said that I was suffering from depression, anxiety and possibly anorexia.
In the last 3 months after losing over 2 stone in just over a year I was feeling so ill I called the GP out for a home visit. As I was a nurse up to 2009 I had checked my blood pressure thinking my reading would perhaps show postural hypotension and noticed that on standing my heart rate was 147 whilst standing. I rechecked this lying down and it dropped to 74bpm. So over and over again I checked it and recorded the readings.
The GP came and took my blood pressure using my own BP machine as she hadn’t bought hers and said she was going to send me for a brain ct scan. I told her about my observations to which she replied that they were not interested in my heart rate only my blood pressure which she had just taken and was normal.
I then read up on PoTS and visited the GP again to see another one, I asked her if she had ever heard of the condition which she said no…. so I asked her to read a quick leaflet from PoTS uk website which she did, she said but this is rare… in other words I couldn’t possibly have this….. I told her about checking the pulse lying sitting and standing over a ten minute period which she said she didn’t have time, so I asked her to feel my pulse whilst talking to her sitting, she said it was in the high 70’s, I then asked her to do a private referral to a cardiologist which she said she would. When I stood up I asked her to check my pulse again and she said it was well over 100….
even more events happened after this and still no one seems to believe….. what do we have to do to get a diagnosis fairly and treatment without feeling like we are a waste of time?
thanks for reading this very long post
heather uk
Oh, Heather, I know a lot of us can relate to your post! Even when doctors witness the heart rate change, they “want” to try to dismiss it, usually because they don’t understand it! If you can find a doctor (usually a cardiologist) who has a tilt table (and knows how to use it properly!), perhaps a tilt table test will solidify your diagnosis so that you can shake off the “anxiety diagnosis” and get the real help that you need? I had to fly across the country to get diagnosed, after facing similar experiences as you had. Some day, we won’t have to work so hard to get a proper diagnosis, but unfortunately, it takes a fair amount of “doctor shopping” to get to that point right now! Don’t give up, my friend! 😉
Thank you for your response. I have a tilt table test and a 72 hour holtor monitor booked for tomorrow morning at 9am. This is under a cardiologist but he is not a specialist in PoTS or autonomic dysfunctions so it will be just tests related to the heart.
I wonder if you could answer another query of mine please?
If someone has say…. Cold hands and feet, night sweats, heat intolerance, urgency in micturition, lack of co-ordination(clumsiness), etc of other symptoms, are these related just to pots or other autonomic dysfunctions?Would very much appreciate your reply
Thank you
Heather UK
Thank you for your response. I have a tilt table test and a 72 hour holtor monitor booked for tomorrow morning at 9am. This is under a cardiologist but he is not a specialist in PoTS or autonomic dysfunctions so it will be just tests related to the heart.
I wonder if you could answer another query of mine please?
If someone has say…. Cold hands and feet, night sweats, heat intolerance, urgency in micturition, lack of co-ordination(clumsiness), etc of other symptoms, are these related just to pots or other autonomic dysfunctions?Would very much appreciate your reply
Thank you
Heather UK
Tricky question because symptoms of autonomic dysfunction include POTS! Being “surgically precise”, ‘POTS’ means that your heart rate increases by 30 beats or more within 10 minutes of incline on a TTT (or 40 beats for a child). Some of these symptoms are NOT autonomic, but are often found in patients with dysautonomia… Clear as mud, right? Pleae let us know how your TTT goes! 😉
Thank you once again for your reply and I agree it is difficult to get to grips with understanding fully (lol as mud)…..
I can confirm that I had my TTT and it was dreadful, I would never have believed it could make you feel so ill or react so badly.
The length of time I should have been tilted to the 70 degree angle was 45 mins, I didn’t last much past ten minutes where I became very short of breath, sick and very hot, I felt that I would have passed out or even worse that my heart would stop, they confirmed that they had captured the event but did not say what the event was!
All I can confirm is that the lady monitoring the ECG was a senior echo cardiographer in the heart and lung centre, and she said that she expected me to pass out way before the time that I had begged to be lowered. Also she said that the cardiologist would be reviewing the results that same day or on Monday (today), and would contact me regarding the results, I informed her that I had an appointment in December with the cardiologist and wouldn’t I have to wait until then for the results, to which she said oh no…. he would look at the results and would be contacting me early this week…..
So I have to wait…..
Can I ask another very important question…. do people who have PoTS have abnormal events recorded on ECG’s during the TTT?
Kind regards
Heather UK
The length of time I should have been tilted to the 70 degree angle was 45 mins, I didn’t last much past ten minutes where I became very short of breath, sick and very hot, I felt that I would have passed out or even worse that my heart would stop, they confirmed that they had captured the event but did not say what the event was!
Can I ask another very important question…. do people who have PoTS have abnormal events recorded on ECG’s during the TTT?
Kind regards
Heather UKOh, Heather, this just kills me… The TTT really shouldn’t go beyond 10 minutes. By that time, everyone should know if your heart rate went up the requisite 10 bpm’s or not. We do not need to pass out (or have ‘events’ on the ECG) for the diagnosis of POTS. My heart rate was 164 at 10 minutes. It would have killed me to stay on it longer. Many of us “code” on a TTT — enough of us that Dr. McDonnell (heading up the EDS 10 year study on EDS/POTS) won’t even put us on a TTT any more! Yikes. It sounds like they got what they need, Hon, but REALLY?! OMG. Get lots of rest and we’ll look forward to your results! Big hug…
Hello again
I thought I would update you with whats happening here in the good old uk lol
The consultant cardiologist telephoned me this evening (something I was told they never do) by one of the good old British Rottweiler secretaries…… he told me I had vasovagal syncope and would fit me with an implantable loop recorder, would see me sooner than my planned appointment in December for treatment (don’t know how without knowing what is causing it), and didn’t even mention PoTS! Does this sound pretty standard?
thank you for your hugs… really need them, just had a really funny turn, felt hot, sick and shook uncontrollably, my alivecor ecg monitor was all over the place….. had a terrible pain in my left arm and the left side of my neck and left me with an awful taste in my mouth after it subsided… lasted over half an hour….
look forward to hearing from you and hope this message finds you well
kind regards
Heather UK
Wow, Heather, that doesn’t sound like the standard here! (What do you guys think?). I would think they’d be looking for the cause, first (but maybe a loop recorder isn’t as big of a deal as it sounds?)… Did they check for thrombosis of your venous sinuses? That is a common cause of vasovagal syncope and requires immediate treatment (blood thinners, antithrobotic agents, etc). Hmm… It’s a bit hard to tell what is going on, exactly, not being there and not being privy to all that is tested. Second opinion? Always, big hug, 😉
Thank you and that is what I thought, how can you treat something without knowing the cause! I had a ct scan of the head and the only sinuses that my own gp not my cardiologist said were showing some sort of abnormality was both sinus areas above the eyebrow, I think if there was a problem like you had the great sense and experience to think of it would not be in both the same in that area?
I think I need a definitely second opinion as I have had the signs and symptoms of PoTS for years.
Let’s hope a new day brings new hope…
Kind regards
Heather UK
sorry the frontal and maxillary sinuses.
I am not very good with my anatomy and physiology now.
Kind regards
Heather Uk
Heather I’m sorry to hear of your frustration with getting proper care. Just wanted to chime in here and say that I experience some of the same symptoms you describe. I do not have a diagnosis as yet. The symptoms of sweating and shaking are most intense and paired with pressure in my head… (no way i can do a treadmill test!). My medical investigations are looking at a cranial CSF leak. I have family history of connective tissue disorder and thoracic ascending aortic aneurysm (mother and one brother), among other presentations.
Thank you for reply Amina… its concerning so many people are being undiagnosed or misdiagnosed….
I have just had the report back from the tilt table test I had done on 8th November! It states absolutely nothing about the extreme tachycardia during the test, it only states that I had a drop in blood pressure whilst having symptoms and no drop in heart rate, that syncope is the possible cause of blackouts (I don’t have them) and so he wants to treat me with midodrine.
talk about listening skills! or reporting on test skills, this is absolutely outrageous…
Heather UK
I came across this POTS blog recently, where the writer (Claire) has analysed a fair amount of studies and drawn up her conclusions from those. I found it extremely interesting and informative and she has given ‘free-rein’ to copy it (or parts of it) to take to your doctor to educate them on CAUSES of POTS, various TYPES of POTS and how to recognise them medically, which TESTS would be best to conduct and what the RESULTS might be.
http://stoppotsvirginia.blogspot.co.uk/2012/04/what-is-causing-your-pots-and-why-it-is.html
It gave me hope that I can further improve my condition.
Regards
Barbara
(UK)
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