Please help - doctor says heart 'normal', not PoTS

[Greyhound]

This is SO RIDICULOUS.

I'm literally using a WHEELCHAIR because my heart rate goes too high when I stand up and I feel so exhausted etc. I was literally in bed the two days after the TTT because I was so exhausted. I can sometimes barely lift my arms to arrange things on a TABLE without pain and exhaustion and lightheadedness (yet I can propel my wheelchair because my arms are below my chest (the wheelchair is a lightweight, rigid one)).

There's ONE criterion for PoTS (the 30BPM rise) and I CANNOT see how my racing heart during the test was not 30BPM+ more than when lying down - I could even tell them when it was 8 mins into the test, I was so familiar with the pattern of tachycardia from my own tests.

But apparently, the tachycardia, chest pain, etc. is normal. WHAT???

WHAT THE HECK am I supposed to do now? These symptoms are NOT NORMAL.

So angry and frustrated I can't cope.

Picture of letter attached.

[Greyhound]

'No diagnostic features of PoTS' - what 'diagnostic features'? There's ONE criterion!!!

[bombsh3ll]

From what I know, pelvic floor exercises are to tighten your vagina, they are not for POTS! This would be funny if it were not so sad and so typical of the NHS. 

I was dismissed after a tilt test as well as it showed sinus rhythm and no postural drop, but they had ignored the HR rise characteristic of POTS. 

I was later diagnosed by Professor Newton in Newcastle with a stand test. 

Irrespective of your test results, having severe orthostatic intolerance warrants treatment. Have you been able to try any yet?

[Greyhound]

Thanks so much for your reply. That's what I thought about the pelvic floor exercises. I was like what the heck?!

I've been waiting over seven months now and I'm desperate to get back to work. I'm so frustrated that I won't be able to talk to the doctor until Monday at the earliest. If they still insist it's not PoTS I'll be at my wit's end.

Re your last sentence, try what, sorry?

[bombsh3ll]

Any treatment, like fludrocortisone, midodrine etc?

[Greyhound]

Nope, they won't prescribe anything because as far as they're concerned nothing's wrong with me.

[bombsh3ll]

That's rubbish, there is something clearly wrong when we can't stand without syncope/presyncope. Many patients with pain cannot "prove" their symptoms either yet they receive painkillers. People with wheezing and shortness of breath who test negative for asthma on spirometry are diagnosed clinically and treated symptomatically with inhalers. 

I haven't been able to access any NHS treatment so far either, but being a GP myself I've been able to source all the first line things myself and unfortunately none have worked. 

Licorice root capsules helped massively for a while though, and can be bought online without a prescription. 

Do keep fighting for treatment. You may have more luck with a neurology or autonomic/syncope clinic. 

 

[Greyhound]

The thing is, although I do get lightheaded, especially if I do anything with my arms at or above chest height, my worst symptom is the fatigue, yet I don't think it's CFS because I can do a lot more sitting down than I can standing and in fact my fatigue seems more linked to standing than activity level. So I was completely wiped out after the TTT, yet I can go for a wheel in the park for an hour and not be too bad (although I do get some fatigue from exercise - it's just not half as bad as the fatigue from simply standing).

I'm thinking that the consultant just thought 'she didn't faint, therefore no PoTS' but surely the HR was clearly not right?

[yogini]

Can you ask your doctor for a readout of your HR and BP during the test?  That data should be available and it's your right as a patient to know and it might help you better understand the doctor's report.  

[corina]

I agree with Yogini, you could ask for the data to get more info  re hr and bp.  You could work from there! 

[Greyhound]

I'm going to try but can't speak to anyone until Monday at the earliest. And then trying to get hold of someone who's allowed to discuss the results with you...I just don't see that happening. I'm convinced they're going to either fob me off or tell me I need to wait months more for another appointment just to discuss the results (I waited 7 months for the TTT and it's taken another half a month just to receive the results letter).

[corina]

You could just ask them to send you the data via e-mail/snail mail. They may ask you to pay for it but it may be worth it!

[Guest ANCY]

So sorry to hear of your situation and their dismissing your symptoms. I hope that once you get a hold of your raw TTT data you can find a Dr who will take you seriously. I also started using a wheelchair because of syncope/pre-syncope symptoms. Years later I am now also dealing with weakness and deconditioning from using the chair. Deconditioning is a big problem and certainly doesn't help POTS or Dysautonomias. Just want to encourage you to do as much moving/exercising as you can so you don't have to contend with extra problems of deconditioning as I have. I hope you are able to find someone soon who will take you seriously!

[Greyhound]

Thanks for your message. I have no idea whether they can give the raw data. I hope they can. I try to move as much as I can without fatiguing myself too much. It's why I got a lightweight rigid manual chair. When I was using my mobility scooter more, I found that not moving enough would make me tired so my manual chair helps me balance activity and sitting down. If I stand or walk places, I just can't function.

[yogini]

Try not to think negative thoughts. You don't know til you try.  Legally they are probably required to give you your health info.  Also, the process of getting better from POTS and dealing with doctors unfortunately takes some time.  Keep pressing forward, however long it takes. 

[Greyhound]

Thanks x

[Greyhound]

Hello all again. They've sent me the data from the TTT. Here it is. 109 is NOT my normal resting heart rate - it's normally between 65 and 85. I'm so angry this wasn't done properly. I think I've lost my job now because I can't wait another 8 months for another test. I'm so angry and upset.

[RecipeForDisaster]

I can't help much, but I may have had two TTTs that weren't "done properly" although I think the staff did their best on this last one. My baseline BP and HR were way up when we started because I was in so much pain and afraid about the biopsies they were doing. I don't have my results but I suspect "normal". It's very hard to get yourself to be totally yourself during these tests. I don't know how the heck they expect us to do it.

 

Isn't it frustrating that they can't sort of see us in our daily lives? If they showed up at my house now, they would see my real vital signs. I have quite the ability to go up when I'm in pain or scared (luckily or unluckily that isn't often.. I probably wouldn't be presyncopal if I were in pain or scared all the time!!). 

[Greyhound]

Yeah, they kept me talking and moving almost right up until I was tilted. How is that supposed to give an accurate reading? I know what you mean - I wish they could see how I struggle  I have to use a wheelchair otherwise I get so fatigued I need to stay in bed. How can this be normal? I don't think it's CFS though because I can go out for hours - even round the park - if I'm sitting down (I can still overdo it but I won't be half as fatigued as from simply standing).

[Greyhound]

An example of when I feel really bad:

This evening I had been standing doing washing up (either I stand and feel bad or use my arms above chest level and feel bad so it's easier just to stand), putting away clothes, etc. and was feeling gradually worse as usual but then felt suddenly very bad as I often do - pounding chest, dizzy, nauseous, faint, heavy, etc.

Normally I'd rush to sit or lie down but I grabbed the HR monitor. It gave a reading of 100/81, 138bpm. I then lay down and it gave a reading of 120/71, 64bpm.

That's over TWICE the heart rate, just doing light household chores. That's surely not normal?

[RecipeForDisaster]

Hardly any of my doctors seem too interested when I show them this kind of data, or on the 30 day monitor, hitting 168bpm from slowly walking... I have heard it explained as lack of fitness, which I know I do not have  just because -they- would not be keeping fit in my situation doesn't mean I don't fight to do so anyway, risk of fainting or not. I wish they could spend just one hour in our bodies.... it would make SUCH a point.

[Greyhound]

Yeah  

[Greyhound]

I'm naturally a really active person and have had to give so much up over the years. I'd love to go back to doing taekwondo, hillwalking, cycling, etc. Couldnt even ride my motorbike much when I had it because just walking to and from the bike in heavy gear and carrying the chain lock made me feel dizzy, sick, exhausted, etc.

[RecipeForDisaster]

I still kayak, ride horses, hike, etc. but I feel awful during and after, and sometimes end up lying on a trail somewhere for hours. Even stirring batter is too much for me... but I don't want to lose my fitness and I do enjoy being active.

[bombsh3ll]

I think what has skewed this test is your high baseline HR which was 109 supine. I suspect this is not reflective of your normal, and if you had been left to lie quietly for at least 10 minutes as per the guidelines, you would have started off lower, hence a jump of 30+ would have been more likely. 

Even if your results are just borderline, you clearly have very symptomatic and disabling orthostatic intolerance which is deserving of treatment. I would argue strongly for a trial of flucrocortisone and/or midodrine.