Is "mild" Pots Possible?

[noodlemaster]

Hi all,

I'm Noodlemaster, from the UK. Thanks for the information posted on these forums.

I'm currently undiagnosed, but I wonder if I have POTS. I've been seeing doctors, but we haven't yet been able to find anything - most are putting it down to anxiety. Perhaps some of you could give me your opinion?

I've had the following symptoms and signs for 18 months, coming on gradually:

lightheadedness - a "drunk" feeling (I've walked out in front of cars in the road, and into people on the pavement)

mildly disturbed balance

difficulty concentrating (I was never too good at this! But now it's worse.)

very cold hands, feet, nose and lips (they go white, and the capillaries can take a long time to refill)

pins and needles in my hands and feet (if I cross my legs, the top leg will soon go numb - noticeably quicker than when I was younger)

a feeling of fullness in my stomach and throat when I eat

weakness, especially when noticeable when I'm carring bags, or using my hands above my head

occasional points of light moving across my vision

sensitivity to light and sound

mild nausea/motion sickness

the need to sleep for longer than normal

dizziness when I stand up (for a short time - see below)

sensitivity to alcohol and caffeine, it seems

an odd sensation when I exercise - it's not lack of fitness (i.e. out of breath or unconditioned muscles), because I know those feelings, it's like my limbs aren't receiving enough "power". It's really noticeable when I climb a flight of stairs. I now feel my heart sink when I know I have to climb stairs!

hearing my pulse in my head when I sit up straight

if I get hungry I NEED to eat!

dark circles under my eyes (I'm less convinced that this sign is related)

These symptoms are experienced every day. They seem to vary in intensity from hour-to-hour, instead of day to day, for instance. The most irritating symptom is the light-headed or drunk feeling - this is what stops me from working and socialising in the way that I'm used to.

I've had a series of blood tests, and an ECG, with no signs of a problem. I don't have any other problems with my health, that I know of, and I take no medication.

The main reason I suspect POTS is because I always have a considerably higher heart rate when I'm standing compared to lying down. Here are some of the numbers (supine numbers are first, standing numbers are second - both taken after a few minutes rest in the position):

60 - 100

47 - 75

50 - 80

47 - 80

46 - 82

63 - 93

My blood pressure doesn't decrease when I stand up.

I also seem to have a relatively low blood pressure. I've sat down in the morning and measured it over the last few months. Here are some typical numbers: 102/60, 98/57, 95/57, 100/54, 100/55, 110/54.

From what I've read, the changes in heart rate are consistent with POTS. I'm wary of trying to self-diagnose, but I can't see the harm if I keep an open mind. Besides, the doctors are baffled, it's taking ages to get it sorted, and I'm more interested in my health than they are.

Do you think that mild POTS is possible? I say mild, because after reading about some of the experiences of others on the forum, my symptoms seem relatively minor. I don't seem to have a particular problem with standing in a position for a long time. My lightheadedness increases when I first stand up, but then it seems to just stay at the same intensity as it was when I was sitting, if you see what I mean. But, this condition is a problem for me - I can't function in the same way that I used to. I'm sure most of you will know what I mean. I can't focus on what my friends are saying to me (I've had people ask me if I'm stoned!). I get exhausted climbing stairs. I have to sit down and try to warm up with a hot water bottle. If I don't sleep for nine hours, I have to catch up during the day.

To my mind, the only thing counting against the diagnosis are the fact that I don't seem to become overwhelmed with dizziness when I stay standing. Although I haven't tested this for very long. Do you think I should? I'm male, too, which makes it more unlikely. I'm 6 feet and 65kg, if that's helpful! I don't know of any viral illness that may have triggered this, although I had a girlfriend with glandular fever when I was younger, and I have been in areas with ticks (which could carry Lyme disease). It came on slowly. But it does seem to be gettting gradually worse. I don't like to complain - I'm not in pain, I'm not suffering. But it's impossible to fully describe this to my able-bodied friends and family - they see a reasonably healthy-looking young man, and despite their kindness and patience in listening to me, I know that there is a part of them which is saying: 'it can't be that bad can it? I get tired and weak, too.' I don't blame them - I wouldn't be able to properly understand it either if the situation was reversed. I'm just annoyed that my body worked fine for 23 years and has now started to go downhill - about 50 years prematurely! Rant over.

I have an appointment with a cardiologist at the end of this month. I'm going to ask for a tilt table test.

Please let me know if you have an opinion on any of this!

Thanks for reading,

N

[futurehope]

I'm no doctor but my opinion is:

Have you had other possibilities checked, things that could be causing your discomfort, such as blood work? I'm thinking specifically of iron deficiency or possibly other vitamin deficiencies? Have you had your thyroid levels checked? Have you been tested for Lyme?

I'm saying that you may or may not have POTS, but before you pin that label on yourself, you have to be sure to rule out other possibilities.

For people with POTS, there are indeed different levels of functioning which can change from hour to hour.

[Broken_Shell]

Hi NoodleMaster,

Welcome to the forum. I am sorry to hear what you are going through. I read through your post, and my answer to your question is a loud, resounding "YES". Unfortunately, many doctors and patients do not understand exactly how dysautonomia manifests... your symptoms sound exactly like dysautonomia. Many of us have symptoms similar to yours. I read your list, and many of your symptoms are exactly the same as mine... the light-headedness and drunk feeling I had for years at the onset of my dysautonomia. I told doctors for years that I felt like I was "floating" and like my head was not getting enough blood, and they looked at me like I was crazy. My symptoms also vary from hour to hour... more like minute to minute most days. You should certainely insist on a tilt table test when you see the new doctor. You may want to browse some of the old posts here to read more about some of your symptoms. Just remember that many POTS symptoms are related to blood flow distribution and inapporopriate autonomic signaling, so although the tilt table testing is helpful for diagnosis, it does not help much with treatment. I was diagnosed 7 years ago, and my symptoms have become more and more severe over time.

Welcome again... I hope that you will find a lot of support and guidance here. I look forward to seeing your posts.

~ Broken_Shell

[firewatcher]

Welcome to the forum Noodlemaster. Sorry that you are here, but glad that you found us!

Not all of us are disabled by POTS, I am still highly functional. I am tired all time and have had a constant headache for 4 years, but I can still work part time. I also have had people think I was drunk: if I stay on my feet long enough, I'll begin to slur my speech.

Heart rate alone is not enough to dx POTS, but a quickening of 30 bpm upon changing position is indicative of a problem, it could be POTS that is just now "getting worse" or diabetes, or many other undiagnosed endocrine disorders.

You can test yourself like I was tested and diagnosed at Vanderbilt University (you will find that many of the articles on POTS come from there.)

Lay down for 20 minutes with the BP cuff on your arm loosely, but ready to go. Wear a HR monitor if you have one or something that takes your pulse. Be within easy sight of a clock:

AFTER 20 minutes supine (flat down) take your BP and HR.

deflate the cuff, and now stand up slowly and stay standing, ready to sit back down on what you were just lying on if you have to. Don't fidget or move!

At one minute standing, take your HR and BP again.

At three minutes standing still, do it again.

At five minutes standing still, do it again.

At 10 minutes, still standing if you can go that long, take it again.

I checked mine this morning:

supine: BP 105/63 HR 51

1 min.: BP 121/77 HR 88

3 min.: BP 100/79 HR 94

If I had to continued to just stand there, my BP numbers would spike and fall, but my HR would continue to rise. I would begin to shake, my palms, feet and face would begin to sweat and my headache would spike. Somewhere between supine and 1 minute upright I tend to "grey-out" where I can't see or get tunnel vision, but I do not faint and it does go away. By 10 minutes upright I'll be slurring my speech and shaking badly. BUT....if I start to move around and stay moving, my HR and BP will normalize. If I try to climb stairs or jog, it is too much and my HR will quickly shoot up to 160-200. If I try to "push through it" and continue, I grey-out again, start losing other senses (about to faint) and will start dry heaving (unless I've eaten.)

I would suggest that in addition to a cardiologist, who may not even have heard of POTS, that you see an endocrinologist to rule out the other disorders that can cause dysautonomia or the same symptoms.

Maybe you are one of the "lucky" ones and it is a more treatable condition!

[potsgirl]

Hello~

You've gotten a couple of great answers so far, and I really can't think of much else to add, except welcome to the forum! I'm looking forward to your contributions, and I'm sure you'll find a lot of good support here, along with answers to other questions you may have.

Cheers,

Jana

[MightyMouse]

Lyme is an unlikely diagnosis for Noodlemaster, unless he's regularly traveling to Slovenia or Austria--other areas of Europe have very low to no incidence of Lyme.

Nina

[noodlemaster]

Thanks for the welcome and the advice from you all.

Futurehope - I absolutely agree about keeping an open mind about what it is that are causing the symptoms. I don't want to jump to conclusions. Blood tests for anaemia and thyroid function came back normal. I should bring up Lyme disease with my doctor.

Firewatcher - thanks for posting the test. I'll try this. I know that diabetes is unlikely to apply, since I've had a random and fasting glucose test that were normal. I'll bring up the suggestion of an endocrine issue with my doctor.

MightyMouse - I used to spend a lot of time walking in the Scottish Highlands. I was certainly bitten by a few ticks, but I never had swelling, or indeed any symptoms, and the last time I went was over a year ago. Thanks for the info.

I might as well mention two other symptoms that I forgot earlier: dry mouth and dry eyes. Oh, and I'm sure that I need to urinate a little more frequently than I used to - but not excessively.

I've been told that my liver and kidney function from blood testing is normal. I had a quick urine test which was also fine.

I'll let you know the outcome - if there is one!

Regards,

N

[Janey]

Dear Noodlemaster,

I am also from the UK and had a lot of problems getting diagnosed. Like in your case, I was more interested in my own health than any of the Doctors who saw me were, and they put my symptoms down to anxiety and IBS. How they managed to attribute heart symptoms to IBS, I have no idea, but basically, I believe the UK has a long way to go when it comes to learning about autonomic conditions. Because my Doctors cared so little about my treatment, I started to think that I was just making a fuss about nothing and that everyone experienced these things but just put up with them. Well that's not the case, so don't just pass those symptoms off as "mild" because they're not.

From my perspective, it sounds like you have POTS, and if you are tall and thin, I would look at the possibility of you having Ehlers Danlos Hypermobility. There are a people a lot better qualified on here to answer your specific question though, so if they don't think POTS is the case, I'd listen to them.

When I finally got my diagnosis I went straight to the UK POTS specialist Professor Christopher Mathias. No other cardiologist or other doctor was good enough. He replies to emails (I can send you his email privately, if you like?) and I'm sure he can help and recommend what you do next.

Janey

[persephone]

Hi Noodlemaster,

I'm in the UK too- where are you? I live and work in Oxford. It certainly sounds like POTS to me. We know that severity can fluctuate quite a bit, so I dn't think the fact you aren't completely incapacitated should rule out the possibility of POTS.

I would suggest you try and get a referral to Professor Mathias now. I did this when I read up on POTS and realised I had it; he confirmed my diagnosis the very first time he met me.

There are loads of treatment options if you feel you need them. Do definitely seek out the tilt test. Something else to do is make sure they use very specific equipment for testing your blood pressure. Regular cuffs with go around your arm can only cope with a certain range of blood pressure readings. If you fall outside of them, the machine will simply keep trying to re-inflate, or it will just come up with an error reading. For years we thought that my bp wasn't dropping and that it was just my heart rate shifting, because that's what the ordinary machines seemed to be telling us.

At my last tilt test, however, a different type of monitor was used called a port-a-pres monitor. It looks a bit like one of those machines they use for testing your blood oxygen levels- a SATS monitor, because like that, it sits on the tip of your finger. However, it is not the same. It measures your blood pressure continuously, with every single beat of your pulse. It shows up on the screen like a continuous ECG, only for blood pressure instead. It even has a peak and trough to show systolic and diastolic readings. When I had this, we discovered my blood pressure was flatlining altogether- the systolic was disappearing to 0. But it was happening quite transiently- so transiently that a short episode could be over by the time a regular cuff had reinflated a few times. In any case, it showed stuff that had never, ever been picked up on before, and helped explain a lot more about the mechanisms in my body that were going on due to POTS.

I hope you get some answers and treatment soon. Meanwhile, lace your food with salt and take extra fluids to keep up blood volume- see if it makes a difference

Let us know how you get on

Persephone

[MightyMouse]

If you look up epidemiology info on Lyme, you will see that Lyme infection (not the same type as in the US) is mostly restricted to Slovenia and Austria... So, even with tick bites, they type of ticks that carry the infection don't appear to be present in the areas you've traveled.

Nina

[brownsea]

hi n

welcome to the forum, ive picked up some invaluable advice here.

your symptoms could well be p.o.t.s, you sure need to exclude other problems first. my symptoms snowballed over the last two years, they werent too bad at the beginning. the doctors couldnt find anything wrong after bloods, and a few referrals.

in the end i went privately this year. and they found out i had p.o.t.s im still having tests done at the moment.

i would certainly ask the cardiologist for a tilt table test, seeing that your pulse jumps 30 plus beats on standing. its worth asking, and not leaving this condition.

good luck, and ask more questions.

emma.x

[anna]

Hi

I'm from UK too, I have an ANS dysfunction of some sort, not diagnosed! But my 3 kids have a diagnosis of POTS.

I have a host of neurological symptoms, and have been tested for Lyme disease, a friends of Mine's son was diagnosed with Lyme's 2 years ago never been out of the UK, so it is here may be only in hot spots but many folk that I know have been tested for it so might want to get it checked just in case!

There are some Dr.'s out there in the UK that are beginning to understand ANS dysfunction stuff, hope your cardiologist is one of them!

Anna

[noodlemaster]

Thanks for the info and advice, folks.

Janey, if you could please send me Prof Mathias email address that would be useful, if you're sure he accepts emails from potential patients.

[Mrs. Burschman]

Hi Noodle. Welcome to the forum!

I self diagnosed before it was confirmed by a tilt table test. I'm not saying it's the best thing in the world to do, but it does happen.

It was a relief, too. I think most doctors just thought I was a nut job.

As long as I take Paxil, I'm highly functional. I walk 30 minutes to and from work each day, and I usually work out on our elliptical, too. I can stand for long periods (though I often do feel cruddy while doing it.) I'm not bragging -- I'm just pointing out that not everyone is severely disabled by POTS. Although I AM severely disabled if I don't take the Paxil!

I hope you get answers about your health problems. I think everything's worse when you don't know why you're having issues!

Amy

[persephone]

I think Lyme is possible in places like the New Forest and the Highlands. There were certainly ticks when I was in the North West in August - I was terrified of being bitten. I should say I've never been tested for Lyme because of the EDS. But I do wonder if there are a lot of people out there with Lyme AND EDS causing POTS

[yogini]

It's definitely possible to have mild POTS...and, though you can never be sure, your symptoms do sound similar to POTS. Probably a good thing to get tested.