So Had A Follow Up Apptment With Nurse, After Event Monitor.

[joshrandall]

Basically, was told my event monitor showed, 14 normal 3 recordings of ectopic beats out of 17.

So I proceeded to ask about considering pots, and I showed him, the picture I posted on here of my blood pooling hands and the responses by people who confirmed it's a symptom, I even showed him that while I was sitting there in the office my heart rate was 140 to which he said there is a specialist centre in sheffield and that he works along side there and a blackout centre here, but that the criteria for pots is vast and you need to meet alot more criteria.

His response was there are lots more symptoms you need to have to be diagnosed with pots, and we can't do it here, and as you are not having blackouts, I'd suggest drinking more water, and exercising. I tried to explain that when walking for 12 minutes my hr went to 200 on the stress test, and was told this is good as I reached my max heartrate without passing out, but I tried to explain that this was not good for me, because I was doing interval training not long ago, and it maxed out 140 so Im going to get tired doing exercise really easy to which he said its deconditioning.

He said do you feel like you are ever going to faint, and I said well I feel really dizzy at times, and lightheaded, but I always am able to sit down.

He conceded that tiredness with exercise easy ties in with pots, but basically, he cant make the diagnosis, and that from what we've seen there's not enough evidence to diagnose pots, and there is nothing wrong with your heart and the dr wants to leave it there and Im thinking what more evidence do you need.

Again my hr does jump 30 beats from sitting to standing, but tends to drop down to 105 maybe 100 from 110, if i get up straight away fom laying and sitting a very short period it will jump 20 bpm but jumps 30 if ive been layin down a while 30 beats but the sort of drops to 107-110 fairly quick however if ive eat or drank or just at random times, it will stay that level and if i walk around it will stay that hr, and sometimes it will go up, it tends to do alot of different things sometimes it will stay 110 or even 120, if im sat upright and doing things, like playing cards or moving and grabbing things sat down, previous to these symptoms starting my resting heart rate was 85. I said If i stand up it will go up, he again was like mine does if I jump up, basically it didnt matter to him if it jumped 30 beats he said that wasnt enough criteria, i thought that was like the main criteria, i had a nhs pot sheet with me alsy listing symptoms and showed him them and he basically said, we cant go through them with you because we dont specialise in it here.

It goes up to about 130-145 with slight exertion (walking up stairs, putting shoes on) walking and sitting upright hovers around 110.

Then my hr went to 105 and he said, that my hr had now gone down because I was nervous which is **** because it goes to like 110 - 120 sat down the day before, and I said, well, 105 is still pretty high for sitting down to which he said it isnt, it really isnt and that he works in this game and its not high, again I said how can you expect me not to be uncomfortable with these high heart rates, on the way here walking it was 140 (bare in mind im not overweight, and this isnt comfortable so its not like im genetically tailored for high hr) I said well it could be a mild case and he said even if it was pots, there is no treatment, so I asked about midodrine, he said because you're not blacking out they wouldnt give you that, and then I mentioned beta blockers and he said we wouldnt give you them at your age and you need to meet lots of criteria, and that if it persists go back to your gp, and I said the gp wasnt interested, and he said well he wont send you to a specialist clinic that costs lots of money.

So I asked if I would be ok exercising and stuff and he said yes, and that im fit and healthy, but again. I mean I dont think I have a significant case, like an extreme case, but I still think it's pots, he even said that people have it and there hr jumps 30 beats from standing and they still dont diagnose there needs to be more symptoms, when I explained my other dysautonomia symptoms he never said anything. Also with eating I explained it goes up to 140 after big meals to which he said drink more water.

He also asked if id been drinking booze alot and I was like no I havent had a drink since this started. Just felt like he wanted to see if it was everything but pots, and then in the end when there was a good chunk of evidence was basically like, we cant do anything even if it is.

The nurse also said, why would you want to label yourself with pots syndrome.

So, I mean do I need specialist help? Im kind of confused where I stand, was he wrong? is this a clear case of pots, I forgot to ask for a ttt, but he made me feel like a bit of an idiot, told me i was obsessing over it.

I guess none of that matters now, because it looks like this is where it ends for any sort of help with whats going on, which is uncomfortable id say, at least.

Or is this just like a borderline case?, I know if I jogged my hr would get to 180-200, which is obv uncomfortable. Im ok with it not being pots, i dont want it to be , i know if it isnt its borderline, but its the fact that the guy sort of conceded it was like pots but said it wasnt and im just wondering wether it constitutes as pots, or wether you know the symptoms need to be much worse for it to be pots and that im making a slight abnormality, more than what it is?

again my dysautonomia symptoms are sort of vertigo flashes that are weird but over quick and not hurrendoes just a rockin feelin lying flat, and a flush into my right foot, sometimes it hard for me to burp as well, my chest gets congested and muscles spasms as well as id say slight weakness.

[statesof]

First off not all doctors are created equally, and many doctors who aren't specialists in this area or who haven't run into many cases of POTS aren't typically as knowledgable about the disorder so it would be good to find a specialist if you can.

I believe the criteria is a +35 increase in hr from sitting/ lying to standing. Have you had a tilt table test done? My hr doesn't always have the +35 jump, but it has shown both times on the tilt table which is a pretty controlled setting. Also not everyone with dysautonomia/ POTS has the same symptoms; I have never passed out and my hr and bp don't have massive swings compared to some people but most of the time my vitals don't really correlate with my symptoms or how I am feeling, though I can usually tell when my hr is running high.

[joshrandall]

I dont think theres anyway that i can get a tilt table test done, they have pretty much finished with me, on how much further they want to take it, and there are no other avenues. He was not going to give me one anyway he pretty much said that, they cant diagnose and id need to go to sheffield and its not a significant enough case.

i emailed a specialist who told me to ask my gp for a referral who wont refer me (money), so unless they take the time to write to the gp and explain things, i doubt id be able to get one, which this doctor wouldnt as I asked her she basically said to go on potsuk website. I mean even if you done a tilt table test and your hr jumps what 25 instead of 35, its still borderline pots?, what can a specialist really do for me? if im not passing out and can function to a certain level but cant do certain things without being really uncomfortable, do i really need a specialist anyway?

[Faye]

POTS is a bit new for me, and I have been doing a lot of reading about pots symptoms and posts here. I was just recently diagnosed with POTS officially, I am sure compared to others, my case is mild, but enough to make it challenging to do the day to day taks, I know my body, and walking up a flight of steps HR would go to 150-170, standing was 125-145, that felt awful, and forget exercise ( I use to do 5 miles a day, not fit but far from out of shape), I went thru 3 cardiologist before I found someone who believed in TTT, and medication.....I am not sure about your insurance or policy, however what I did was call around to local cardiologist that were covered under my insurance till I found an office who heard of POTS and that Dr did have a few POTS patients he works with. No matter what kind of insurance, you have a right to multiple oppions, if your GP won't refer you, maybe find another one that will....just a thought.

I have found being a care taker of my spouse that you have to fight your way thru the health care and insurance company to get the care you deserved. Frustrating as all get out, but well worth it. The folks here encouraged me to keep looking for a Dr who could help, and I am so glad I didn't give up.

Best of luck and wishes.

[Debbie Rose]

My first cardiologist and Electrophysiology Cardiologist were not as familiar with the dysautonomia's but another cardiologist I went to knew I needed to see his EP Cardiologist because with his check of my HR and BP-lying,sitting and standing with time intervals were way off-HR up with continued drop in BP. I saw the EP Cardiologist and he told me about the fact that the Syncopy Clinic had just started to train for Autonomic Disorders too. And thru them I had my tilt table test. I was found to have a dysautonomia "cousin" to POTS . I never passed out but got dizzy/lightheaded enough to make me sit down before I did....why don't they get that? Some of us can sit before we fall. I also suspect I have other issues but it has taken me 6 months of aggressive pushing to find the right answer. Odd to because during a stressful time 4 years ago I had these symptoms and no one had any answers-went to cardiologist then and all the tests were basically normal...so don't give up, as "Stateof" said-some docs aren't seeing enough patients with our symptoms to learn more about it...so keep on looking

Debbie

[joshrandall]

thanks for the replies, what im interested in though, is how much different a specialist can make? i mean what could they actually do for me?

[Debbie Rose]

A specialist in dysautonomia, or syncope, or electrophysology can evaluate the in depth areas that require results-like BP's sitting,lying and standing - a PCP would not know to do this. The Tilt table test will tell you which autonomic dysfunction you have and some places do "sweat tests" and muscle biopies which helps to rule in or out the neuropathies that also sometime show up. And once a deinitive diagnosis is obtained then treatment can be more focused too.

I have Vasodepressor vagal syncope-a cousin to POTS...I tolerated only 23 minutes on the TTT before my BP bottomed out....I am on fludocortisone daily and try to drink over 3 liters of fluid a day and eat high salt diet.As instructed...and I wear compression knee highs all the time too.

Specialists take extra years in training in their area of focus and know both all the right tests and all the possible treatments for a given diagnosis

Hope this helps

Debbie

[joshrandall]

thanks, so does this sound like pots? is it a significant enough symptoms like i say i find exercise hard and get a few sorts of uncomfortable feelings, dizzy, lighthead, weakness, spasms, chest pain, today after doin pushups x10 hr went to 140 felt dizzy, yesterday my heart twinges, oh yeh and brain fog losss of train of thought and get hot sometimesw for no reason plus i noticed on strss test my sweat was delayed i seemed to sweat all at once and my muscles were burning and my arms went really red.

[Debbie Rose]

I am no expert on POTS but there are website accesses listed in the "Information" option at top of page

I have the NCS-Neurocardiogenic Syndrome/vasovagal syncope/Neuraly Mediated Syndrome (Syncope)-all used intermingley with each other so my symptoms are different. There is also a link in here somewhere for Vanderbilt Clinic and their description of POTS is very detailed

So feel free to explore-there is alot of information here

Also note that most of us have several conditions in addition to or concurrent with our primary dysautonomia and so some of your symptoms may be o a different "added" condition as well

Hope this helps

Debbie

[bigtrouble]

Why didn't they put on on beta-blockers. The first line of treatment is beta-blockers, most likely propanolol, metoprolol, atenolol. They can start you off on a "baby" dose, because ultimately, you have to feel comfortable.

I was feeling very uncomfortable when my symptoms started back in 2012, and my heart rate hovered at 95 while sitting and doing nothing. In 2013, 2014, 2015, there were periods of 1 or 2 months when I was ok, so it fooled me into thinking the nightmare was over.

[joshrandall]

mine was 105 in the nurses office doing nothing, and this is apparently not high at all according to him...they just were not interested in helping me, they had ticked there boxes of nothing arrhythmical being wrong or structurally and didnt want to spend any more time, i

m pretty sure he said there were 150 criteria you had to meet for pots (****) and he just tried to say it was some other reason why my heart rate was going up. i even had a 140 heart rate in the office on my watch and he told me it was because i was nervous as it did go down to 105. its just infuriating its like they do not care he said beta blockers were not good for young people, but again they didnt want to have to say i had anything because he was acting on behalf of a dr who wanted to discharge me. i emailed pots info uk, and stars, and a dr in newcastle, the former 2 did not reply the latter, said to ask my gp for a referral the gp is an idiot who told me he wont do it because the report of former doctors all say that it is sinus tachycardia and i think there is something wrong with me and he will take to court anyone dr who tries to write to inform them that i need referring, the newcastle dysautonomia doc who i asked to write without telling about the whole court thing as it is utter stupidity would not do so and just referred me to the pots uk website. it is just all about money to these people.

The nurse i had even said, that theres a woman with constant ectopics they couldnt induce so they couldnt do any more for her, then said, not saying that is your situation....why is it relevant then? you know its all about money.

it seems i have exhausted all options here in the uk, unless private health care which i cant afford, very very sad state of affairs this healthcare system is in, they dont listen i took clear evidence of blood pooling and was dismissed and told, you are lucky i have listened to you lots of people would have said not looking at that load of ****. i just cannot believe it. i really cant, its like....someone sticking there fingers in there ears, when theres clearly something wrong, very frustrating and it doesnt matter how many articles get printed on neglect and refusal of diagnosis, very depressing and upsetting and they seem to get off on it, ive noticed them smiling consistently when they flatly refuse requests or tell me to go to the gp if it continues then they smile when i say the gp wont refer me and they laugh saying he doesnt want to spend money which is exactly the same as what they are doing thats why pasing the buck.

im angry. frustrated and scared, and i just cant believe this is our healthcare system just ********* on power trips.

[statesof]

I think unfortunately POTS is not well known or understood in the general health community so it is often shrugged off an an anxiety disorder or something else. I was as Mayo Clinic because everytime I did any exercise I would be bed bound for a week feeling awful and the doctor said I only had minor POTS and my symptoms were just an anxiety disorder, and my being irritated with her inability to actually listen was just more proof of it. Went back to Mayo later did a TTT and saw an autonomic specialist and was diagnosed with POTS no problem. You really do have to find the right doctors who understand this illness, but it is much easier said than done.