floating

Thanks guys. I guess I just get frustrated because my life is on hold and whilst I do have MH problems I hate that everything relating to heart stuff is blamed on that. 

47 minutes ago, bombsh3ll said:

My GP was and is equally unhelpful. Are you in the UK? I am actually a GP myself and only found out POTS existed the hard way when I developed it 3 and a half years ago. I don't think many GPs would know what it is, but there is no excuse for being unwilling to learn about it. If I had a patient with a disorder that I had not heard of, I would take the trouble to read up on it.  

I found NHS cardiologists in my area equally ignorant and arrogant. Initially my referral for a tilt test was denied - which I only found out about when I phoned after waiting months - because the cardiologist didn't think it was indicated. A previously healthy 34 year old woman who suddenly can't stand up and was passing out, wasn't considered worth investigating. Finally I got a tilt test after explaining to the technician on the phone that all I wanted was to have the chance to walk down the isle and get married standing up!

The cardiologists then still refused to see me as the tilt showed sinus rhythm and no postural drop. They clearly knew nothing about the diagnostic criteria of POTS. 

I have now found a private cardiologist to take on my care but it shouldn't be this way. 

I hope you get an interested and compassionate cardiologist, that is worth more than any amount of knowledge if they are willing to learn and work with you. If you are anywhere in England there is also an NHS autonomic specialist centre in London that your GP can refer you to. I am currently trying to get referred there but as I'm in Scotland the process is a lot harder due to funding. 

 

 

 

Yep! I have actually been referred to St. John and St. Elizabeth to Prof. Rodney Grahame because my EDS is getting hard to manage within rheumatology within the NHS (I basically keep getting passed around between hospitals/rheumies). Prof. Rodney Grahame did actually personally ring me up and said that when he's seen me if nothing has been done with regards to autonomic testing (and gastro/potential MCAS stuff) he would be more than willing to refer me on to the attached autonomic unit that is under the same hospital.  Currently though due to money issues (I'm unemployed on ESA and money is tight) my mum has said we should try harder to see what the NHS can offer me, at least until I have my PIP outcome. 

Really sorry to hear that it was so difficult for you to get the TTT though, I'm beginning to wonder if it'll be difficult for me too. I have an echo scheduled for the 20th and on the same day will be getting a 24hr holter monitor. No mention at all of a TTT, but perhaps my actual cardiology appointment on the 29th they will listen to my logic and also explain anything weird they've found for the other two investigations (outside of the abnormality that was already picked up on the ECG I had in A&E the other week). 

Normally my GP is willing to work with me, especially with regards to EDS stuff, but for some reason he was just different in that apointment. Perhaps he had a difficult day?

Has anyone else had this issue where when asking for a referral for POTS diagnostic testing the GP tests your blood pressure?? The two times I've asked for a referral to get tested for POTS they've taken my blood pressure and then say I can't have POTS. It's like they don't know what the T in POTS stands for and then when I try to explain they make me feel like an idiot. They then use my MH issues as a scapegoat. It's getting really annoying. But, hey, at least I have a cardiology referral I guess. Hopefully the cardiologist knows what POTS is.

On 11/20/2017 at 5:07 PM, MomtoGiuliana said:

Yes UK doctors are listed.  You could also post a topic asking for recommendations for doctors in the UK from forum members.

https://www.dinet.org/physicians/

BTW I also had very high hr like you describe on standing.  My TTT my hr went as high as 168.  Hope you can be seen and start trying appropriate treatments w a specialist soon.

Thank you! And I hope things are getting better for you now. What kind of thing helps you the most?

1 hour ago, yogini said:

You can of course keep good records, it won't hurt.  I just meant don't stress out or make yourself sick doing it.  We get a lot of posts in this forum from people asking about POTS.  Usually I think maybe the person could have POTS, but what you describe seems pretty spot on.   I think even an electrophysiologt would be concerned about an HR of 160 walking around - if you can't find a POTS specialist near you, that's who I would try to see.  If you have a doctor who diagnosed you with EDS, that could be another person to ask, since many people have both POTS and EDS.

Thank you.  I have no idea what my HR is walking around. Can't really walk a whole lot anymore and am looking into getting a wheelchair because of it. Struggle even walking around the house and can't go downstairs very easily (the walking issue is a POTS and EDS thing though so hoping if I get POTS under some kind of control then I can work on my EDS).  Kind of embarrassing as a 23 year old. Will look into getting an electrophysiologist referral. They specialise in the autonomic system right? I did find a list of POTS specialists in the UK on a UK based POTS site.  If the cardiologist that I get referred to first isn't helpful then I'll ask my GP to refer me to one of the POTS specialists listed here or on the other site.  The person who diagnosed me no longer works within the NHS, and my mum wants to try and not go down the private route for POTS testing due to how expensive it will be. Having said that, the private place I have a referral to for my EDS does have an attached autonomic unit (Hospital of St. John and St. Elizabeth) so if the NHS route fails I know I have the autonomic unit to fall back on. Just don't currently have the money to go private for everything at the moment and would much rather not be so much of a burden on my parents.

Thanks again!

No, I'm actually still trying to get a diagnosis for my suspected POTS, it's just proving a bit difficult due to it being underdiagnosed and misunderstood. My only current issue that has been diagnosed is Hypermobile Ehlers-Danlos Syndrome (and a slew of MH issues). I just read a lot and know quite a bit about potential issues found in EDS patients and also have a friend with Chiari (and the trifecta that is EDS, POTS and MCAS). I do plan on getting checked for Chiari soon though as I'm having a lot of symptoms that could be indicative of it, and after a phone consultation with a world reknowned EDS specialist based in the UK he says it would be worth getting a standing MRI done to rule out (or in) Chiari as a potential cause of some of my troubles - he is based in the private sector, so will be a while til I can see him and his team due to being unemployed because of being disabled by my health issues.  

Have you been recommended anything?

1 minute ago, odontoid said:

My doctor says that, while my brainstem is too far forward, he would not classify it as Chiari. Not quite sure of why, but happy to rule something out. I'm trying to schedule with a geneticist at Hopkins now, but their department is swamped and moves slowly. I'm now looking into other genetics departments that might be able to see me sooner.

Which elements sound familiar to you? I'm so sorry if you're going through the same thing, because it really sucks.

How odd. But, well, it's good it's not Chiari! Did he let you know of any treatment for the herniation?

Loose knees, back pain, lax ligaments, popping/snapping sounds (this could be indicative of subluxing joints - my doctor told me that's a lot of what my joint popping/cracking is about, especially if I feel things jolt back into place), etc. the herniation is also linked with things like EDS (I'm not a doctor though! But Chiari is common in EDS). Early onset POTS is also common in EDSers because of different etiologies (we don't have POTS because of viral infections or things like that).

I dunno, I could be wrong, but yeah, a lot sounded familiar to me. 

Chiari? That's what the herniation of the brain out of the bottom of the skull is. Have you ever been seen by a rheumatologist or geneticist for Ehlers-Danlos syndrome? A lot of what you've written here sounds familiar to me. 

On 11/18/2017 at 10:40 PM, yogini said:

I'm not a doctor, but with those very high rates and EDS I think there is a very good chance you have POTS.  I would not risk passing out and I don't think you even need to spend much time keeping a record.  I think you need to just find the right specialist - there is a doctors list on the main website. 

I guess I'm just worried about being fobbed off again. But thank you for your support! I'll take a look at the doctors list too. Do you know if there's doctors on there that practice in the UK?

12 hours ago, Nathalie said:

When I was diagnosed with POTS in the emergency room, my resting heart rate (laying down) was 55 bpm! Hard to believe considering it was about 130 on standing. I was fainting before it could get any higher, so who knows what a true tilt table test would have shown for max heart rate, but nonetheless, it's not important how high a person's heart rate goes...as long as it is over 30 bpm over resting or above 120 bpm. I personally think a poor man's tilt table test is just as reliable an indicator as using a true tilt table. There is nothing much different about the two, that I can tell. Does any one know differently?

I just bought a FitBit a few weeks ago to keep an easy eye on my heart rate. My heart rate has been (fortunately) boringly normal (woot woot!)....up until this morning. Glad to have the fit bit. Was an easy way to keep on eye on what my heart was doing without having to hold my fingers to my neck to feel a pulse as I stood still, or moved, around the house. This isn't to say I would endorse buying one...I feel it is perhaps a bit limited in what it can do. Whenever I felt a palpitation, it seemed to lose track of my heart rate for about 10 seconds.

However...for the first time in a year, (have kept pretty stable on florinef, with the odd tachycardia here and there), I woke up this morning feeling "off". I instinctively sort of knew it was because my heart rate was probably fast, and sure enough, I was about 90 bpm while just sitting still watching tv. Upon standing (still), I was at a steady 120-125 bpm for at least 5 minutes straight.  That's about 60 bpm over my typical resting (laying down) rate, so that's quite a change.

It really caught me off guard though...after a year of being so much better than the way I was a year ago when I was fainting every time I stood (aka- before florinef), I had thought those days may have been behind me . Lasted for an hour or two and then I got busy and stopped paying attention. Odd, but there we go -- I guess POTS can come and go, no matter how much time between episodes.

Wow, haha, yeah, mine often goes down really low but when it's just during the day and I'm on my laptop or whatever it's usually around 60-70 which I use as my resting for TTTs (as that's usually what it is when checking it), I always feel awful the lower it is though because my blood pressure is usually pretty low too. Do you have low BP? And I'm not sure regarding your question about the TTT compared to the poor man's, the true one kind of scares me. haha.

I also have a FitBit, I've had one for a few years now. They're useful bits of kit, but I also have a pulse oximeter as when my HR is too high my FitBit can't keep up.  So they're not perfect, but still good (I used to have a Charge HR and now I have the Blaze). 

Sorry to hear you're feeling rough again. Hopefully it's just a blip and things get better again!

So, did a PM's TTT and made a note of my HR at different intervals. Got the following results:

Supine for 10 minutes at rest:  80BPM (little high for me).

HR immediately on standing: 151BPM.

2 minutes of standing: 146BPM.

5 minutes of standing: 163BPM.

10 minutes of standing: 162BPM. 

The peak of my HR during the 10 minutes of standing was 174BPM.

Would it be worth keeping a recording of this to show the cardiologist when I see them? How regularly should I keep a record? I felt extremely symptomatic and almost passed out many times during the test. 

2 hours ago, MomtoGiuliana said:

Hi floating

The definition of POTS is a change in hr of 30 bpm or more from prone to standing.  So if your hr is going from 60-75 to over 130 just standing up I think that indicates you need further investigation with a specialist.  Some people w POTS do experience bradycardia.

https://www.dinet.org/content/information-resources/pots/how-is-pots-detected-r99/

Yes some people have worsened symptoms after eating.  That happened and happens to me.  I think the theory is that if your blood volume is already low and then you eat, blood pools around the stomach after eating and essentially you have even lower blood volume in the rest of your body.  I found that eating smaller meals (more frequently) helped.  Also more fluids helped me.

That's what I thought too, seems to be tough to get people to do these kinds of referrals here in the UK! Hopefully this referral to cardiology will be beneficial though and they'll be able to investigate what I think may be POTS. 

I have got hypovolemia, had no idea that could be affecting the POTS too. I do tend to eat smaller meals, but am unable to do so frequently - it makes me feel sick and sometimes makes me vomit. That's actually another thing that I need to look into the causes of.  I also struggle with fluid intake too, but have been working on this. 

Thanks for your reply! 

Hi, new here. I have been diagnosed with hypermobile EDS (well when I was diagnosed it was EDS-HT) for a few years and I still fit the new 2017 criteria. For quite some time now I've been having heart issues (among other things), but I keep getting fobbed off by doctors (although hopefully that'll change soon due to a dodgy ECG). Essentially, I think I have POTS (as well as this issue that the ECG picked up on).

When I do the Poor Man's TTT on myself my heart rate goes from usually around 60-75 laying down to above 130 - this happens every single time, and sometimes I even pass out. Like today, it went from 77 to 168 at the max during the duration of the Poor Man's TTT (stayed above 140 for the whole time basically).  Having said that, I noticed that after laying down when I completed the ten minutes it my heart rate went down to 55 and stayed there, is that normal? Pretty much any time I try this my heart rate decreases to below what it was before I tried the test out. It's like my body is over compensating for the exertion?

Also, my symptoms seem to get worse after I've eaten something. Is that common?