Undiagnosed, Do You Think This Could Be Pots?

[lauralulu]

Hi all,

I've suffered with fatigue and plenty of other problems ever since I was ill in 2001 with a virus- I've always felt like I never fully recovered. Have had loads of tests and never got to bottom of it, ended up changing Drs because he started treating me like a hypochondriac, saying "Laura, you're healthy!" as if it's all in my head.

A friend on another forum recently saw my symptoms and told me about POTS. At first I discounted it because I've never had any problem with standing up, but then when I read through it and saw all the other symptoms, I thought perhaps she could be right, so I bought myself a blood pressure and heart rate checker, just to give me confidence to go to the Drs with some evidence if needs be. Now, my heart rates weren't as high as what many POTSies get, but I still think they may be higher than 'normal'.

The symptoms I've experienced are:

ALWYAYS thirsty, and if I can't get a drink for half an hour- or even worse an hour, I feel as if I'm dehydrated. (Been tested umpteen [very many] times for diabetes thanks to this one!)

Seen a uro who diagnosed with me 'overactive bladder' because I pee about 20 times a day, I can't comfortably hold much more than 100mls as my bladder spasms as if it is full, urging me to empty it!

Menstrual problems- I get dreadful PMS, I feel weak, dizzy, my chest feels tighter and my heart feels like it's pounding more. I get anxious around my periods. I also have a strange cycle (about 40 days!) and in the past had such severe pains not during, but leading up to it, that I actually underwent a laparoscopy because I thought I had endometriosis!

I used to vomit and get flu-like symptoms the week before a particularly heavy period, and the pain was like nothing in the world, the closest I can describe it is that it was like having gastroenteritis from my pubic bone right up to under my breat bone. (Going on the pill incidentally cleared this up, thank GOD! Although I am not currently on it because I get migraines and the progesterone only one doesn't suit me at all).

Migraines- often 'silent' (i.e. just the aura)

I get AWFUL tension headaches and when I do I feel like I could have meningitis because I can't stand lights and my neck is soooo painful. I get such trouble with neck tension and tension headaches that I HAVE TO have a massage every 6 weeks, if I don't, I'm ill with it!

I also have:

Low tolerance of stress- I seem to tire more easily, get more 'worked up'.

Much less fit- even after trying to get fitter again

Migraine auras and strange fuzzy vision at times when very tired. (Like looking at a snowy TV for a few moments when getting up). Or I'll see dazzling little lights that 'dance' for a few seconds in a kaleidoscope like pattern.

Vision has on rare occasion gone yellow when I've stood up, accompanied with a dizzy feeling, close to fainting.

Have a number of times felt faint when I've stood up and had to 'hold on' to something to steady myself until feeling passes.

Gastro-intestinal problems (bloating, reflux, wind, finding certain things hard to digest, IBS type symtoms come and go).

Headaches- often on left side. Have always suffered frequent headaches.

Muscle aches and joint pains- particularly backache and neckache and aching elbow joints.

Knee problems when walking further than normal, particularly downstairs or hills.

Dizziness- usually worse in morning- recently (this year) head often feels 'swimmy' when I'm just sitting.

Have had 'head rush' symptoms, sometimes coming on when sitting down! It's like my brain is a turbo charged helium balloon trying to rush out! Very weird.

Occasional knife like pains on left hand side of body starting at pelvis/ovary sort of area and going up to breast.

Anxious at times for no apparent reason, often related to menstrual cycle. (Feeling 'jittery'- like I can't relax).

Very forgetful, bad short term memory.

Insomnia at times despite being very tired. Or sometimes I feel like I've slept like a log but wake still feeling exhausted.

Occasional feeling of breathlessness, like something is pressing on my chest, constricting breathing.

Often whilst laying in the bath, a strange sensation of breath being 'pushed out' of body- a strange spasm in chest and/or solar plexus region, forcing breath out in what feels an unnatural way.

Strange feelings when very tired in legs (often happens during plane journeys)- the feeling is like the feeling you get when you need to stretch, which makes me feel the need to move my legs to relieve the feeling, but it doesn't really relieve it.

Recently (this year) I have had the same feeling in upper body, which makes me fidget in bed.

Now, I know no one here is my Dr and so you can't you know, medically advise me etc but I have seen my Dr and I am having some blood tests and an ECG next week, but I was wondering, based on my symptoms (and the heart rate checks I'm about to post) do you think it's worth asking my Dr (or cardiologist as I may be referred to one depending on my blood test results, though I'm not expecting them to show anything as I've had loads!) about POTS? I don't want to seem like I'm some hypochondriac symptom surfer but I've suffered with this 'mystery ailment' for so long and if there's even a chance it could be POTS, I want to be tested properly! Not sent packing with a clean bill of health just because they can't FIND anything!

Here's my heart rates- I've done this first thing every morning all week. The first value underneath each day is the laying down in bed btw. BP followed by HR.

Monday

93/53; 63

Standing 1 min: 123/80; 121

5 mins 114/77; 101

10 mins 106/73; 102

Tuesday

85/56; 79

Standing 1 min: 103/72; 114

5 mins 139/101; 103

10 mins 111/79; 100

Wednesday

(day after having had a migraine that started 11pm)

93/74; 79

Standing 1 min: 109/81; 132

5 mins 136/76; 109

10 mins 147/80; 99

Thursday

118/67; 69

Standing 3 mins: 95/62; 125

Friday

90/61; 73

Standing 1 minute: 96/78; 109

3 mins: 103/73; 94

5 mins: 114/70; 113

I'd appreciate any input as to whether you think it's worth requesting a tilt table test, depending of course what my blood results show.

Thanks,

Laura :-)

[MelissaCrystal]

I think you should specifically find a dysautonomia/pots doc to do a one-time diagnosis with treatment options. To me you seem to fit it all, but it's good to have the diagnosis and a doctor to call in case of emergency. Just make sure it's a POTS doc, or else you may get the run-around for years, even if you fit the criteria =) Dysautonomia docs say that even a negative TTT can still be POTS/Dysautonomia because it depends on how the doctor interprets the data, and a lot of them don't know enough about all the criteria to make a correct diagnosis (even if it may seem simple to us ;p). My bp dropped to 40/20 for a while during my TTT and my doctor at the time still didn't think I had it---but when I sent the results to Karen Friday at Stanford, she was apalled at that doc's opinion and said it's all too common for docs to not believe in autonomic problems and just point to anxiety or other things.

Anywho, I definitely think a TTT is worth it! I hope you find a great doc! Completely worth it =)

[lauralulu]

I think you should specifically find a dysautonomia/pots doc to do a one-time diagnosis with treatment options. To me you seem to fit it all, but it's good to have the diagnosis and a doctor to call in case of emergency. Just make sure it's a POTS doc, or else you may get the run-around for years, even if you fit the criteria =) Dysautonomia docs say that even a negative TTT can still be POTS/Dysautonomia because it depends on how the doctor interprets the data, and a lot of them don't know enough about all the criteria to make a correct diagnosis (even if it may seem simple to us ;p). My bp dropped to 40/20 for a while during my TTT and my doctor at the time still didn't think I had it---but when I sent the results to Karen Friday at Stanford, she was apalled at that doc's opinion and said it's all too common for docs to not believe in autonomic problems and just point to anxiety or other things.

Anywho, I definitely think a TTT is worth it! I hope you find a great doc! Completely worth it =)

Thanks for the advice and speedy reply! :-)

[ramakentesh]

Yeah those symptoms seem pretty similar to mine so its certainly worth going to see a POTS dysautonomia specialist. Silent migraines are a daily problem for me at times, visual snow as well.

My blood pressure doesnt drop - infact mine increases when I stand. Despite this I get dizzy and have fainted a few times.

[lauralulu]

Yeah those symptoms seem pretty similar to mine so its certainly worth going to see a POTS dysautonomia specialist. Silent migraines are a daily problem for me at times, visual snow as well.

My blood pressure doesnt drop - infact mine increases when I stand. Despite this I get dizzy and have fainted a few times.

Aww, I just noticed your post on constant dizziness and thought hmm, that's how I am feeling lately! I've never fainted though which is why when I first heard about this I thought- that can't be me- but then when I read further around it, I was shocked at how many of my 'mystery symptoms' it could explain.

I'm in the UK and have no idea how to go about getting referred to a specialist, but believe me I'm determined to find out!! I've been 'fobbed off' by Drs for YEARS andnow I feel like I may finally be 'on to' something, I am not taking it lying down!! (oh ho ho, pun intended lol).

[MelissaCrystal]

A huge number of people with POTS don't ever get to the point of fainting, I'm one of them that doesn't faint. I could definitely get to that point, but I usually know when I'm pre-syncope and sit/lay down before I actually get to the point of passing out!

[lauralulu]

I have another question, does the increased heart rate have to stay consistently above 100 when standing for it to be POTS? As mine isn't always... it's dropped to the 80s and 90s a few times and once even to the 60s! and even when it is above 100, the highest it's been when standing was 132 and from what I've read of POTS many people have much higher! I guess I'm just wondering HOW they diagnose it, is it based mostly on the +30bpm criteria and how long does one have to be at that increased level of heart rate? I don't want to be barking up the wrong tree... :/

I know you can never KNOW for sure if you have something until you get an official diagnosis but I want to be as sure as I can be before asking to see a specialist. That way I'll have the confidence to mention it and ask for the required tests.

If I was going on the symptoms alone I would be confident because there are so many symptoms I have that POTS would explain, but I'm afraid it could be something else I don't know of, and that I might look stupid asking to see a specialist and then discovering I was making the wrong assumptions!!

[Janey]

Hi Laura,

This isn't an immediate reply to your last question, but I just wondered, are you based in the UK? A few other POTS patients and I had a really hard time getting diagnosed in the UK and were dismissed countless times as hyperchondriacs. I have the email addresses of some POTS specialist Professors in the UK who you could discuss your symptoms with over email. They are aware that it is sometimes pointless going through some GPs because they don't naturally diagnose dysautonomia as it is so rare.

Janey

[lauralulu]

Hi Laura,

This isn't an immediate reply to your last question, but I just wondered, are you based in the UK? A few other POTS patients and I had a really hard time getting diagnosed in the UK and were dismissed countless times as hyperchondriacs. I have the email addresses of some POTS specialist Professors in the UK who you could discuss your symptoms with over email. They are aware that it is sometimes pointless going through some GPs because they don't naturally diagnose dysautonomia as it is so rare.

Janey

WOW Janey, thank you! Yes, I'm in the UK and have already had issues with my last GP dismissing me with that label due to me menstrual irregularities and pain it's actually made me afraid of Drs and tests because I think they're all going to label me or tell me it's all in my head just because THEY haven't found what is wrong!!

Discussion of symptoms over email, wow, would they really do that?!! That's amazing! It'd be ideal really, I've been so worried about the whole issue of having a diagnosis missed because it's difficult or rare. Thanks again, I'd really appreciate the emails! :-)

[flop]

Hi Laura,

Welcome to the forum. Your symptoms certainly match those of a lot of the members on here. The biggest clue though has to be the BP & HR readings you posted. Your HR is certainly increasing by 30/min on several occasions from lying to standing. For a POTS diagnosis on TTT your HR only has to do the +30 for a short time, usually within the first 10 minutes of the upright stage. Your HR doesn't have to stay high for a diagnosis.

I'm in the UK too.

Flop

[futurehope]

I haven't read all the posts, but I wanted to chime in that in some cases, such as anemia, POTS can be a symptom, not the primary disease. Years before I was sick enough to pursue a diagnosis, I had "temporary" POTS symptoms because I was peri-menopausal and anemic. The POTS symptoms abated back then when the other conditions improved.

My opinion is that all possible causes of POTS symptoms should be pursued first , before just assuming POTS as a stand-alone illness.

[lauralulu]

I haven't read all the posts, but I wanted to chime in that in some cases, such as anemia, POTS can be a symptom, not the primary disease. Years before I was sick enough to pursue a diagnosis, I had "temporary" POTS symptoms because I was peri-menopausal and anemic. The POTS symptoms abated back then when the other conditions improved.

My opinion is that all possible causes of POTS symptoms should be pursued first , before just assuming POTS as a stand-alone illness.

Oh, agreed! I'm thankfully having full blood work up done at my GPs surgery next week, to test for anemia and thyroid problems. I'm wondering about POTS because, whenever I've been ill, I've had blood work done as a first resort and it so far it has always come back A-okay (apart from last year when I had a "type of glandular fever infection" and hepatitis). The only problem with that has been they've tended to just send me home with a clean bill of health and a bit of a sceptical frown, as if I'm worrying about nothing, when I know that ever since 2001, I just haven't felt like the person I used to be!

Thanks for the reply about the TT Flop! I was wondering about that. If everything comes back fine with my bloodwork this time, I might just muster up my courage ask for one because it would be good to know one way or another.

[MelissaCrystal]

I haven't read all the posts, but I wanted to chime in that in some cases, such as anemia, POTS can be a symptom, not the primary disease. Years before I was sick enough to pursue a diagnosis, I had "temporary" POTS symptoms because I was peri-menopausal and anemic. The POTS symptoms abated back then when the other conditions improved.

My opinion is that all possible causes of POTS symptoms should be pursued first , before just assuming POTS as a stand-alone illness.

I'm pretty sure most of the time POTS is a symptom of something---but there are so many causes, known and unknown, that most doctors search for a cause -after- diagnosing them with POTS.

My POTS is caused by Dysautonomia caused by a connective tissue disorder for example, and we followed the clues from the symptoms and diagnosis' down to the underlying cause.

So yeah, I don't think -anyone- should just stop at POTS, at least initially, because the underlying cause could be simple to fix (like anemia). But of course, if you spend too much money or time searching, then it's your decision to just treat the POTS alone and manage the symptoms.