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POTTY Wars - UPDATED

Blog entry posted by Hell...Hath...No...Fury.., May 15, 2014.

I finally went to get tested for POTS. Its taken me three years to get there and like all hospital appointments, i'm now left nearly dead, deflated, insulted, angry and irritated: emphasised by my instant symptoms and compounded by the looming PEM monster truck heading my way.

I took results from home tests and videos showing my heart rate just in case my heart happened to behave itself on the tilt table.

Got taxi to hospital. Arrived at 12.40, was taken for tilt at 1.30pm. Lying for 10, tilt for 10. I couldn't see the screen, i knew the heart rate was going up but didn't feel like it was a huge leap (during home tests the max its ever reached at 10 mins is 133bpm, but by minute 20 it can be anything up to 240bpm) and i have video's showing it. It has sometimes climbed to 240 beats while just sitting in a chair at my desk.

I thought i may have got a break between the tilt and speaking to a doctor but i was wheeled straight in (took wheelchair with me thank god)

He said even though i meet all the clinical criteria for POTS and showed it on the tilt test they can't give a diagnosis to someone who lives a sedentary lifestyle; only to people who are active. So i was left wondering how other people with ME have been diagnosed with it?

I thought out of everything over the last 15 years, this would have been a clearcut diagnosis, straight and simple. The problem i thought i was going to have was a normal result on the tilt making me look a liar but instead my heart plays ball; but still no diagnosis.

At 3.30pm, after the tilt test and then 1 HOUR AND 45 MINS of answering questions and then some medical tests on arms and legs, he went out to consult another doctor... As soon as he left, I started winding down and crashing and could no longer sit up in the wheelchair.

After 15 mins, i managed to inch my wheelchair to the door and catch my mam's attention, she was worried sick about where i'd vanished to for hours. I then fully crashed and broke down crying, i couldn't hold it in, the exhaustion wouldn't let me. I slumped forward and a nurse passed by and helped to carry me onto the bed to lie down. She must have overheard me crying and said I'd made myself ill with breathing fast! (Because the tilt and two hour questioning played no part at all)

I'm now seriously ready to go home. All thats been recommended is drinking an extra litre of water and more salt (added to the usual 2 litres) and exercising!

The first doc then appears with a second doc. I dunno if its because i'm nearly a corpse now or because he has that 'vibe' (we all know the one) but i know its not gonna be anything good. The first doc was pleasant and 'listened' and this doc was the opposite. I felt like i'd just had 'good cop' now it was time for 'bad cop' interrogation.

I'm lying there, mascara streaked all over my face and i've now got tremors and shakes in my arms (from the tests and inching my wheelchair to the door to grab mam's attention 10 mins earlier)

First thing he says is 'thats unusual' and i tell him its normal when tired (hint hint). He then sits there staring at me like i'm an alien life form, and starts with the questions about the ME... I apologise and tell him i can't physically explain it all again. From years of being on phoenix i already know the conversation that will follow. I could even pretend i'm psychic and answer the questions before they've been asked but i'm dying and can't be bothered.

He then starts pushing our local ME clinic (which is CBT and GET) asking why I haven't been. Wish i was doing the tilt test then as my heart is now working overtime trying to give me enough brain energy to answer this 'correctly'

I explain that it only offers CBT and GET which hasn't been proven to help people with ME. I now realise he's a CBT 'pusher' and will jump to its defence at all costs with me in the opposite corner of the psych boxing ring. In 15 years i've been lucky to not once have to fight the 'psychological battle' with any doctor i've ever encountered and i've now been slapped with it when i'm now at my weakest so i have no intention of entertaining it longer than necessary.

He fires his points at me and i fire mine back. He then mentions the statistics of people with ME who have 'recovered' with CBT. I then slipped in the little questionaire, baseline percentage's they changed after the trials to make it look like more people had 'Improved' The first doctor looked interested in this so the CBT convo then came to an end.

He said a strange thing when i said that ignoring symptoms can cause relapses and he said something like 'Thats okay' and i told him its never okay to lose months of your life at a time.

I knew it was coming, i 'psychicly knew' so i answered one question before he said it, because if i heard him say the words..... Well i just couldn't hear him say the words.... I told him the high heart rate isn't caused by anxiety. He asked why i'm so opposed to the idea that it might be. I said because i know that it isn't. (Even though i'm trying to hide the fact that i'm currently very anxious because i don't like being interrogated while i'm crashing fast from a previous line of questioning)

He also said. 'Everyone's heart rate increases when they stand but they don't pay attention to it.' I said. 'Thats because their heart rate normalises and doesn't keep increasing up to 240bpm. I've brought video's demonstrating this if you want to see.'
He says, 'that won't be necessary as we saw an increase today.' (Yeah coz you wouldn't want to see anything proving just how un-normal it is)

He then said that i need to start exercising to treat the POTS. So i then explain the obvious for a second time today, that its a tricky situation in that exercising could help the POTS but makes the ME worse, while resting helps the ME but potentially makes the POTS worse.

He then jumped on that statement putting words in my mouth saying that i said that exercise is bad for you. I told him i said no such thing and that exercise causes ME symptoms and rest is the only way to recover from a relapse.

He then said that lying flat, crawling around the floor on hands and knees and getting help doing things isn't going to help anything... I also got the impression that he would take my wheelchair off me if he had the power as he asked if mine was bought. I told him i have an adapted one from the nhs and a bought one for outdoor use as i live upstairs.

I told him i got the wheelchair because i was sick of crawling around the floor like an animal and it took ten years of suffering to make that decision, and as a result, i can do a lot more because of having it.

I told him that during years 5-10 on and off i managed to get out for a one mile walk every other day after gradually building up over a long period of time. He said but even thats a sedentary lifestyle and i should have been doing more! I then told him that i eventually worked up to walking at a speed of up to 4 miles an hour during that mile and his eyes lit up, then said, that was way too much.

So i'm either too sedentary to be diagnosed with POTS or i'm doing too much to be diagnosed with POTS.

I said its impossible to keep something like that up long term as something always ends up causing a relapse and that more than just physical activity causes relapses and then you have to start all over again each time.

He wanted to know what caused my decline 5 years ago and i explained that moving out of parents house and living alone caused the decline, going out and carrying shopping, doing housework etc. he then wanted to know why i stopped exercising. I explained again... Because i was doing shopping and housework so there is no spare energy for exercise in-between recovering from daily living activities. I could actually feel his eyes rolling in his head at that comment.

All of this is happening while i'm shaking, crying in pain and dying on the bed, clearly needing to go home, yet he still kept me answering questions for a full hour. He finally decided to stop and said 'so lets get back to dealing with the POTS' I said, 'Yes please if thats okay''

By this point i'm now way too ill to discuss POTS or anything else. He recommends Beta Blockers low dose to lower the heart rate and I agree to try it even though i'd already stated to the first doc hours ago, that I was nervous lowering the heart rate without first addressing why the heart rate is high.

He tells me to come back in two weeks time. I told him I won't be recovered enough by that time to be able to travel back. I mention that i start to deteriorate after an hour of being out and that i've now been out for 4 hours and answering questions for 2 and a half hours. I didn't need to see him to feel the 'look'. He tells me to ring him instead if there's any problems with the Beta Blockers and arranges to see me in a couple of months instead. He also said he's pretty certain that the Beta Blockers will eradicate the fatigue. (Yeah just like exercising! because the fatigue doesn't 'really' exist the way i claim it does)

I was stupid, and not prepared enough. Anytime i go to hospital for something other than ME, i forget that what usually happens is the ME dominates the discussion instead of the point of the visit. The doctors would rather nit pick at something they know nothing about with the perverted fascination of a schoolyard bully.

They then gave me my prescription and expected me to go to collect it there and then from another part of the hospital.
Dying in front of their eyes appears to have zero effect on them. We ask how long it will take and they casually say 'half an hour or so'.
Mam then steps up and says it will have to wait and we're going home right now.

The second doctor re-appears and i quickly take the chance to apologise for being abrupt and explained that people with long term ME automatically go on the defensive through years of negative experience and thanked him.

I asked Mam if i came across as a lunatic, and she said I came across well, like i knew what i was talking about and stood my ground.

We finally left at 4.30pm. I was beyond dead. We then had half an hour to wait for the taxi (thank god i had the wheelchair) Once in the taxi, i went into 'even deader mode' as we were stuck in traffic. I lost the use of my arms and legs as I sat there and broke down crying, once again with pure exhaustion and i just couldn't control it this time. The taxi driver was probably well and truly freaked out but I really, really didn't give a shit.

Finally got home, then had to crawl up two flights of stairs on my hands and knees, now quietly crying in case the neighbours could hear the wailing, crawling 'thing' slowly, creeping past their doors that now resembles a legless Alice Cooper.

Flopped into bed to nurse my latest nhs war wounds.... It took a good few hours to shake off the feeling of not feeling safe in my own home. I felt like i'd been burgled but it was me who'd been burgled. I started to worry that all the work it took to get adaptive aids fitted in my home over the last couple of years to help me by social services could be taken away 'for my own good' with one strike of a pen from a doctor. After three years of trying to get there, i'm as always wishing I hadn't.

Update: They've just rang me to arrange for me to go back in to be measured up to have orthopedic stockings fitted. I hope they're not expecting that to happen anytime in the next few weeks!

I've never heard of stockings being used to treat anxiety before :-D


UPDATE: I finally saw Julia Newton last month and told her I was dreading coming back to hospital after my previous 'treatment' and explained what happened.

She also thought that I'd been given the POTS diagnosis, when I explained to her that they wouldn't give the diagnosis because of my sedate lifestyle, she said 'Well I can correct that right now and diagnose you myself!' She was so lovely, I felt like crying when I left. (Not in the same way as before lol)

She also told me the 4 litres of water they prescribed was way too much and not practical and what I was already doing was fine and that the previous 'doctor' doesn't have the power to prescribe CBT which was a huge relief.

I collected my support stockings while I was there, but I'm going to have to find some device for putting them on as it's literally impossible for me. I managed it once and nearly had a stroke! I couldn't get them off without help either and considering I live alone I'd end up being stuck in them lol.

I stopped taking my beta blockers a few weeks after they gave them to me as they caused multiple blackouts leading to hours stuck on the floor so I'm trying some calcium channel blockers instead.

I'm a bit nervous though as the letter to my doctor states I now have POTS but I have a horrible feeling that my GP will take that to mean 'instead of' ME. Which will cause problems down the line.

But, what a difference in appointments!!!! It's the only illness in the world where when someone professional speaks to us with complete respect we feel like crying with relief!!
brenda, PNR2008, alex3619 and 5 others like this.
  1. PNR2008
    I think you did extremely well answering your Drs. I had a similar experience after my tilt table 2 days ago. I was treated much better than you but the body pain and tremors after the test still haven't subsided. I'm a wreck, couldn't even load the dishwasher my head was such a mess. My Dr wants me to try Levine's Protocol have you heard it? He doesn't get it about the ME and POTS PEM. I have a list of things to do, most I'm already doing but I too couldn't go the next day for more appointments. All this feels like demands on me I can't take right now. I understand your frustration. I hope time will sort it out for us but that's wishful thinking.
  2. alex3619
    Lol, orthopedic stockings can help with POTS or any form of OI ... its a tacit admission on their part.

    I am sorry you went through that. Yet it was not just that you stood your ground, you might also have helped the next patient. Maybe one day the doctors will wake up.
  3. Valentijn
    Pretty stupid of them to dismiss it as an effect of inactivity, rather than a cause of it. The anxiety is always funny one too. How is it anxiety if I feel perfectly calm, aside from my racing heartbeat and the light-headedness caused by my narrow pulse pressure?

    Maybe you can take the clearly positive results to a doctor that isn't an asshole to get more appropriate treatment. You also might want to consider complaining to the hospital about the abusive and dismissive attitude.
  4. Valentijn
    It's horrible when this happens. I had it after my tilt table, during which my pulse pressure magically stayed at 50 the entire time. My normal is under 25 when standing up that long. The cardiologist referred me to a neurologist interested in issues like mine, who turned out to be a psychosomatic nutbag. He ended up printing out the PACE trial publication, and handing it to me, which resulted in me cheerily telling him why it was completely inapplicable. He insisted that the definition of the syndrome doesn't matter (which would mean that the treatment for a sprained ankle is the same as for cancer, etc?), and ignored my low norepinephrine lab results, insisting that the NRI couldn't help me, even though it had been a huge help for months.

    If they get pissed off in response to objective data, I think it means we win. So congrats!
  5. Hell...Hath...No...Fury..
    @tania i totally agree that had i met the arsehole doc prior to doing the tilt i would have told them to stuff it. But i only got polite friendly nurses doing the tilt.

    I also think i did really well with my answers considering what i was going through at the time. 'Bad cop' was sitting by the bed (in my wheelchair) doing the questions and all i wanted to do was head butt him!

    And about the laying flat causing POTS, they say thats exactly the reason why they can't diagnose it (because of deconditioning) so in effect going by their standards no-one with ME could have POTS, even though POTS is a symptom on the ICC criteria for ME lol
    Valentijn likes this.
  6. taniaaust1
    oh how utterly horrible for you and such bullshit said to you too

    "He said even though i meet all the clinical criteria for POTS and showed it on the tilt test they can't give a diagnosis to someone who lives a sedentary lifestyle; only to people who are active"

    That is crap. Too much laying can apparently cause POTS but they still will diagnose POTS in this case (and treat it with exercise etc).

    Your experience is much like what Im expecting if I go for tilt table test at local hospital .. just to have a hospital test saying I have POTS (I already have a diagnoses from poor mans testing but unfortunately some ignore this). Im refusing to allow them to test me there thou unless they are prepared to give me a drip immediately after to help stop crashing from the tilt table test.

    Im amazed at how good you were with answering the interragation... congrats at doing that so well esp under these circumstances.

    When I was about to get a POTS test done at hospital.. the doctor who would of done the test turned to me and said the test could turn out a false postive as if I was anxious it would get my heart rate up when I stood. To that I just agreed with him that test wasnt best done then.. as I didnt want to be tested and it showing up postive like it should.. only then to have my result dismissed by this doctor who obviously wasnt going to be good with anyone who has ME/CFS from the start.