joshrandall

Wow I am so upset, and frustrated once again after my initial appointment, the nurse then has sent the letter through th e post which im guessing is a copy of the report that reads. I have reviewed Josh in the clinic. As you are aware this gentlemen had palpitations which during his event recorder tracings showed that three of the events were due to an isolated ectopic beat. Josh came to us today obviously with an agenda (again, painting this negatively) relating to a possible diagnosis of POTS syndrome. He has obviously been doing some internet searching in line with the symptoms he has been having. Some of his symptoms are related to an awareness of a more forceful faster heartrate an awareness of different sensations in his body including muscle aches and weakness. he has also noted that his hr increases substantially from a sitting to standing position and that he generally feels quite tired and lethargic at times. (This is all good then he goes on to say how nothing physiologically wrong) Then states I have explained that having a diagnosis of POTS syndrome is a very difficult process and one which requires a number of different tests. I have also explained to him that most of the symptoms he has do not meet the criteria for POTS syndrome at all. I explained importance of exercise and fluids etc. Obviously Josh does have his own feelings on the symptoms the he has and this a very individual thing. I hope by todays consultation he feels reassured that from a medical standpoint we do not feel he meets any of the criteria relating to POTS syndrome but this is certainly something we would not dismiss due to the complexities of the problem and the difficulty in achieving a diagnosis. Goes on to say do not plan to see me in next 6 months and that to take it up with you (gp) if problems in future. Erm what? dont all the symptoms specifically match pots syndrome that im having? like sitting to standing fast hr, the blood pooling im seriously confused again this guy said that, you need to be having black outs which again pots uk is quoted as saying only 30% have black outs. Incredible hes contradicted himself in this letter, now it gets down to whether a gp wants to justify turning me away via this or, actually realize that it contradicts itself. Does this read like a letter to justify not doing tests? I have previous history on my repeats of negative paintings of my suspicions of pots, like from a former gp "thinks he has neurological condition". Sigh.

hey yes i have emailed stars and recieved no reply as of yet. hoping to hear back, yes it is all about money i have a pretty ignorant gp so i need to change him for sure!

thanks for your reply im in the uk and i see the one doc is treating autonomic failure? are these all private docs?

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.

hey yeh i had an event monitor, and echo and all was fine, but had a couple of episodes of this sort of pain, that didnt catch on monitor, my cardiologist then released me as they dont specialise in pots and didnt want to go to the trouble of reffering me. i do get muscle spasms, and when taking pulse i have felt on a number of occasions a vain spasm

im guesisng this is a spasm? kind of scary gosh, i feel so depressed of not having any support and these worries, i was having panic attacks about my heart and now i actually have issues, and its not panic, but real concern and fear now.

So im worried about a pain I feel not in my chest specifically my heart, it is a sort of bruising tender pain thats comes on for a second, like a ive had before but I havent had in a while only since I done ten push ups the other day first time id really exercised. Just kind of worried its kind of consistant its not ache i feel it happen brief a fair amount of times a day. It just worries me that its my heart not coping with the stress, and i have no one to talk to about this as doctors wont listen so forgive me for posting.

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.

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?

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?

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.

So today experiencing this symptom of tingling and numbness in two fingertips as wel as being really tired, and i guess im just looking for some reassurance its not a stroke? ive had this before, but not since first onset of symptoms.

The statin I took was also simvastatin, I only took one though but it was enough to do irreparable damage. sorry to resurrect this thread but again, this is something i have experienced from taking one statin as hard as that may be to believe and it looks like im not alone. So my conclusions are not unfounded. Im 24, and its just very hard to wrap my head around, that after having panic attacks, and hearing a horror story about a friend with high cholesterol and worrying I may have high cholesterol as I was experiencing chest pain which I now believe to be muscle pain from the gymn, like he was, and panic attacks from that chest pain a statin was suggested to me by an older relative who's medication it was, not knowing much I thought what harm could it really do and it would put my mind at ease. My relative obviously had no idea of the risk of side effects with these drugs, which is frustrating as surely he should be informed by doctors, but no, the medical profession just pumps drugs into us all, without giving two ***** about the damage they can cause. Now Im left with a chronic illness. After taking the statin I then had cramp in my fingers literally an hour or so after, which progressed to huge muscle spasms and pain, then breathlessness just while talking and heart racing and vertigo like rocking on my bed, huge paranoia, forgetfulness, wet feeling on chest and angina as well as night sweats couldnt even add up numbers in my head for a few days as I lost the thought and even slight hallucinations. By the way Im lucky I took the one as there are cases and these symptoms of mitochondrial damage match other cases of mitochondrial damage from statins but the impact is far worse, global amnesia, als, neuropathy, cardiomyopathy, rhabdomylosis and kidney damage (my blood tests showed increase in white t cell count and kidney functioning very hard, doctor had to acknowledge the statin may have affected me, didnt believe the symptoms) there is also a great link between the rise in heart failure and statins and dementia and statins, please look this up on the internet if you doubt me lots of doctors outline the science behind it and condemn the drug as it stops the coq10 pathway and others in the liver, which we need to function same can be said for cholesterol, the latter of my symptoms dissipated the others have slightly improved but were horrendous at first or perhaps I have become tolerant of these symptoms, but they have not gone away 4 months down the line. Now I have pots like symptoms slight exercise such as going upstairs hr is about 140-150, uncomfortable palpitations and pvcs that I never experienced even when I had panic attacks, certain food or overeating induces the same and a bounding pulse with huge pause in chest ectopic beats, which thud and are very noticeable not like, slight ones people normally get they dont notice, as heart is racing I literally feel the thud and it makes me dizzy and feel sick. Hr jumps 30 beats and eventually drops from supine, blood pooling in hands as seen from pic I showed the other day, short term memory isnt great, I forget my train of thought more now, light headedness and brain fog all things I never had before in my life before this statin. Now I have to somehow convince medical professions, that these are not panic attacks even though I have a history of them. Just very hard to fathom that what is supposed to help people causes damage like this, and hard not to resent my relative slightly for such a misguided inclination, especially when he knew he got cramps on a night from the statin and absolutely detest the medical profession for not informing people thoroughly of just how serious these pills are, I mean where do these doctors get there license from. Bit of a self pitying post but, im 24, I have mental health issues and now I have this, aswell as the battle to have it acknowledged, and as you can imagine Im just now not having too many panic attacks over the heart stuff, as now I have actual symptoms at first I was even more terrified. What I dont understand is how you get took into hospital for abnormal t wave and racing heart beat, 200 bpm on 12 minute stress test, feeling sick like you are going to pass out after, of 12minutes walking after previously being in a gymn doing high intensity interval training, and all of a sudden I cant walk for 12 minutes, and then the conclusion is sinus tachycardia. Sorry to have rambled on kady about myself, and I hope you know that you are not alone if you see this post. Have you managed to get a diagnosis of dysautonomia?

thanks for the replies all. Good to know I have further evidence pointing towards dysautonomia that my family or doctors dont really believe. I noticed when I was in hospital they put me on a stress test, for 12 minutes, walking and walking fast towards the end 200 bpm, was my heart rate by the end of it, apparently thats fine lol. After I finished It, I had the same feeling burning in arms, hands red raw tingling had to sit down dizzy and sickly and then ike a delayed on set of sweating after.

hey katie, yeh it *****, i am hoping to get a diagnosis but being labelled with the anxiety sign atm, I knew that my hands was something like that because ive never had it before i started getting these symptoms, sad that doctors cant recognize these things. I dont know if im a borderline case or what have you but if i over eat or go upstairs or something my heart tends to skip beats and i feel abit dizzy, not alot i dont pass out, i dont think but it induces panic. So but obviously i am showing signs of dysautonomia, my hr will get to 140 for a good 20 minutes if i over eat and that does make me dizzy boat rocking sensation, walking around it is usually over 100 slightly 105-110, but if i stand still it usually jumps from around 70 -100 then drops back down a few minutes after to around 80-90. I am somehow going to try to convince a cardiologist to give me a tilt test but i wonder if it is going to be an accurate measuring scope for my autonomic as that aspect of the symptoms doesn't seem to be too prevalent its the skipped beats that scare me and the thin pulse, but mainly the skipped beats, i mean if i take my pulse i literally feel the gap, and i think that cant be good maybe now is the time its going to completely stop or go into vt or pvt or something.

Hey so, I was pretty high up at the football match tonight, and I had one beer at half time going back up the stairs, I felt slight dizziness and heart pausing and thudding, had to take my pulse and it felt thin, then at times felt like it completely stopped so I crapped myself and wanted to leave, bit overwhelming people shouting and standing up from sitting down I couldnt watch match anyway. Anyway safe to say very embarrassing and I am hopefully ok now Im home, but saddened by this episode. I also want to post this picture as I never had this before till after I get symptoms and its not after ive been sat on my hand or anything I just seem to get this in general, i was told by a doctor this is adrenalin which I dont believe, and another just completely overlooked it, i think it has something to do with circulation or blood volume. http://tinypic.com/r/dvk3sj/9

Great! thanks a lot I will certainly do this, then they at least have to take me seriously, thanks for the response. The only thing ive noticed though is that my pulse jumps high from sitting to standing but it doesnt always stay high sometimes it just comes back down within the minute bare in mind this is only like, laying for 15 minutes, so I dont know. I need to do it for half an hour. Im very exercise intolerant just went up and down stairs and my hr got to 160.

thanks for the replies, yes I have this at certain times, usually after eating big meals. I know its happening coz I feel dizzy and light headed usually I wonder, what is the best way to convince a cardiologist of dysautonomia? I know alot dont want to listen when your labelled with anxiety so I thought perhaps Id take a pulse watch and show him that when i sit down to when i stand up my hr goes up abit?

Does anyone else have this. Very hard deep pulse, I was told I had some leakage in valve, but that everyone has some leakage. Its not necessarily really fast, it just beats really hard. Just abit worried about aortical regurgitation and hypertrophy, but was told my echo was fine because I also get a wet feeling on my chest, but wouldnt this show up on x ray mind you I dont get the wet feeling everyday. Literally feel your heart bouncing in your chest and on your wrist. Hard not to worry when its to do with your heart. I have an appointment Jan 8th with cardio doc.

So Im wondering my symptoms seem to have slightly improved but I have noticed that at times my hr when standing will increase to 110, someetimes 100, sometimes it is only a 20bpm increase, going up stairs it gets to 120, lifting heavy objects for a few seconds is 120, then drops back down, Id assume running it goes up again, and it hovers at 100 for a while when walking. When eating certain foods, it did rise to 140, but this doesnt seem to happen as much now as I dont eat big portions. Would this all still be POTS, or would it be borderline, I must say it is very uncomfortable when I get out of bed, and forget that my heart will start thumping.

i have been to 2 doctors already ive just made a complaint against these doctors.

the problem i face is, i sufferd with mental health issues and have used drug in the past, when i went to a and e i just wanted them to take me seriously so i told them id used cocaine, i spoke to a dysautonomia doctor, that someone mentioned on here who is kind of close to me, but my doctor read the hospital report which said my hr was down to sinus tachycardia caused from drugs and binge drinking when on 2 seperate occasions they acknowledged my hr was high for no apparent reason none of this was put in the hospital report, just standing on the treadmill the nurses saw my hr was 110, before i was even walking, it had jumped from 90 to 110 and they went to ask a doctor wether they should go through the test, again none of this in the report and i suggested them twice to that it could be neurological, and they dismissed it, told them of my dizziness and then my hr was up to 200 bpm just on a 12 minute walkin test yet they said i passed the test. I went to my gp who literally said, that even if i had a syndrome the best thing for it is was work - how am i supposed to work, he wouldnt refer me, based on the hospital report and he said if someone suggests it ill take them to court....

I had an event monitor handed in 3 weeks ago, im supposed to see the doctor in clinic, cardiologist. Been told no urgency, dont think he has any clue about POTS. I showed clear signs of it in hospital. My family dont think there is anything wrong with me, all the while my quality of life *****. I mean it could be worse, but vertigo, heart racing, dizziness, bounding pulse after eating, all give me more anxiety, and I no longer feel like a normal person. If someone would just say oh there is something wrong with you, i know id feel better somewhat. this just *****, and i dont know what doctor to turn to, i dont think they honestly know anything about the condition in this area.

well no im not going to try and convince anyone one statin done this, considering how much the medical industry loves that drug. i would just like to add some more symptoms, sometimes when i eat ive found my arms going cold and feeling like i cant breath very strange. as i say i think i will wear a pulse watch to my doctors apptment and show them that my pulse is going up when standing, because again they tried to say anxiety. i know on my event monitor i caught my pulse speeding up and dropping very abruptly, surely that has to count for something?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2849981/