joshrandall

So, Im trying some oil pulling for my teeth made me a little nauseous, kinda get worried about stuff like this.

Like a bad reaction or something, but its not that bad, i just get paranoid, anyone know if coconut oil can harm you? barring being allergic which im not as far as i know, ive had it in meals and stuff, btu when i do this oil pulling its like a fair amount may have used a little too much, it seems to make nauseous a little.

Also I read the deliciously ella book, in which she says eating vegan/unprocessed food, turned her life around, can anyone attest to this, and its kinda hard for me to do that coz i dont go out much now, and my mom wont buy the stuff its too much effort for her.

I know pots by its self and dysautonomia isnt life threatening, but, what about if its caused by an allergic reaction to a particularly powerful med, that didnt resolve itself?

So I get chest pain alot but now and then quite rare, my heart feels tender, and I also get burning and stinging plays and sometimes just a sort of bloating feeling in the heart, its weird, but Ive never blacked out and the tender thing is usually brief, but Im guessing its to do with the dysautonomia and spasm, but it could be constrictions and causing coronary artery spasm, or angina, its at rest.

Kind of worried because, I had a full work up and this stuff wasnt really present, I mean they missed one getting the ecg on it, and the doctors discharged me and think everything is fine, I dont have an ongoing doctor and they refuse to diagnose me with pots, I am saving now for a private doctor, which I should have done previous but depression etc, I wasted a fair amount of money i could have used, and some even said even if i got the diagnosis it would be no different but given this i think it would.

Is it something to worry about, there is no way I can get anyone to take this seriously until its like, an event that happens, they think im a hyperchondriac with panic attacks.

Thanks guys in advance.

My cardio tests at the time were normal and they dismissed all my concerns previously but Im not sure if these symptoms were present in their entirety, they dont even think I have POTS, the nurse told me that some doctors dont even think its a real thing lol. So Ive had to wait and try and save up for private treatment. Hopefully that will get to the bottom of it and nothing happens in the mean time.

So I get this like wet feeling on my chest, that sometimes stings aswell, it seems to be near my heart, sometimes its like there is cold water dripping on my chest aswell, I had an echo etc before, with this somewhat symptom present previously, I think its got a little bit worse, as it never used to sting, Ive had docs listen to the heart etc. It doesnt seem to affect the pulse, its just really uncomfortable. Wondering if its may be nerve pain, i also get like a clench that isnt hurt its just uncomfortable as if the top of my chest near my heart or underneath is being slightly clenched real slight and makes me aware as if its contracting a little doesnt hurt just tenses a little and then goes, wondering what it is, it kind of worries me cause its around my heart quite central, it tends to come and go and doesnt really hurt just a little bit uncomfortable, and sometimes its hard to describe but its like a feels hot in my chest like its on fire a little burning sort of like ripples aswell a little bit like something is dripping, but not very painful just makes u conscious of it, central aswell, but I had ecg with the wet feeling being not too long ago in the waiting room and they were ok. Sometimes it tends to sting a little then I feel drips go under my arm and it starts wearing off a little. Weird?

I get it when waking up, laying down about to go to sleep, hard to explain. Basically I can feel blood rushing, as if, when you sat on your hands and then the blood is coming back to them, you can feel the blood moving right? I have this where my body feels like its slightly buzzing, feels like my blood traveling very strange.

I just moved a chest of draw with empty draws up stairs, as my uncle asked me, and my mother offfered to do, thing is my family laugh they think its a joke - so i said ill try anyway after i move them i feel sick dizzy, heart is skipping long beats and going very fast, rush to head, and feel lack of blood in my arms, and I just get terrified that my hearts going to give out or im going to die, I panic.

sorry to ressurect this topic, but emmas inbox is faulty so, had to post here

hi emma im based in middlesbrough and ive been thinking of going private, as i cant seem to get anywhere on the nhs, my pots/dysautonomia, can be pretty bad at times, but its not, a massively significant case but does make everyday tasks difficult, such as carrying things etc, im lookin for an impartial doctor that isnt going to judge me on past reports, and also knows enough to know that while my case may be minor compared to some it is effecting me enough for there to be an issue, is dr purcell like this and will he listen to my concerns and not stigmatize me, as ive suffered with anxiety and mental health previously. also how much is one initial consultation? thanks josh.

Thanks for the replies, honestly i just feel, I mean, it's a bit surreal, I just erm, I guess I'm not the strong silent type. People really don't understand this condition and that hurts, they just see you and think you are fine. I guess I just as well feel that my family have sort of let me down, they just don't really care. This is hard, really hard. Thanks for the support and encouragement guys.

:/

I don't normally like to complain or voice how frustrating all of this is, but I felt this is the most appropriate place of any since I don't want to put it on my bf and family anymore.

I'm just having a very difficult time lately with all of the symptoms and fatigue that I'm experiencing, and the strain it's putting on the people I care about. I generally have a very high tolerance for pain and physical discomfort, but when it's like a million mosquitos biting you all the time verses one occasionally, it gets the point where you just start to go a little crazy. Individually and sporadically, the symptoms are tolerable, but together and constant, they start to get really frustrating.

I think it's especially frustrating because my parents are physicians, and they don't know what to say, and it's not fair for me to expect an answer for them. They have to be my parents, and not physicians, and it makes them feel helpless when they don't know what to tell me. So I end up feeling like I shouldn't talk to people about it and I feel a tremendous amount of guilt when I do need to get it out because other people can only take so much. The worst thing about all of this is that I don't "look" sick, so it's (understandably) difficult for people to get just HOW crappy I feel and how FREQUENTLY, and therefore I don't fault them at all for being tired.

Yesterday, I was light-headed and short of breath just sitting at my desk at work all day long. It felt like I was fighting to stay conscious. And the strangest thing was that my heart rate was unusually slow for me (60-65 bpm) and then overnight became very high (woke up with 110 bpm). Everything is just so all over the place and I'm really scared of it getting worse. I can't eat anything without feeling sick, and I'm exhausted all the time. My boyfriend jokes around with me about how much I sleep (all in good fun, of course) but what I thought before was me just needing more sleep than most people to function is actually my response to feeling like crap all the time.

Basically I just feel like I have no concrete answers and that everything is just getting progressively worse, and all I want is someone to tell me they know what's going on and to fix it. I have a GI appointment on Thurs. and I'm hoping to gosh he knows about dysautonomia.

I HATE THIS STUPID ILLNESS!!!

It's a horrible illness, Im sorry you are having these issue's. I guess I just try and think it could always be worse, that is hard when Im reminded of what other people have that I dont I guess thats where strengthening our mental resolve comes in.

I went round a friends house for a birthday tonight and I found myself really there the whole time just in agony psychologically about the situation, I feel emasculated, many of my friends were congregating in the kitchen and I just realized the limitation's in it all, nor can I really drink as it makes me get dizzy, they all were going out to a night club and I was the only one who chose not to go simply because, I may not get a seat and standing makes me lightheaded, any time I'd of been there, I'd of enjoyed it and got drunk. I'm overwhelmed by the issue, and the fact that no one understands, I really just dont know how to live with it, I have alot of other issues aswell very serious ones, which add to the issue.

So basically, Im writing this thread because, my family all keep saying there is nothing wrong with me or I have a minor hindrance and it's kind of getting me down. Im not sure my case of pots is severe enough to warrant treatment, ill give you some info, so I went for a walk the other day pretty slow, my heart rate was around 120 the whole time, when I got in it took a while to settle down, and I felt pretty bad kinda like I'd been on a jog, flushed, quite dizzy.

I suffer with anxiety and depression and the whole issue kinda scares me. The other day, my sister asked me to bring her bag up stairs my HR was 150 after going up the stairs and I felt pretty out of breath. I found it particularly telling my sister said her hr was 140 and she was pushing extremely hard in the gymn. I can often find myself struggling with piecing my conversation together when Im talking with someone. It's like I think of what Im going to say then forget it then remember it 10 seconds later.

I seem to be more tired, but not extremely tired, some days I get muscle aches, and spasms, and knots/without any exercise. My hr doesnt always jump 30 beats if I stay still it tends to drop a bit lower sometimes just 25 but it does sometimes, and will always go up 30 bpm if I start walking, If I eat a big meal my hr can jump to 140/150 laying down and be pounding with ectopics. I often feel a rocking vertigo like feeling when Im laying down, its very brief but somedays last longer and is nauseating, I also get lightheadedness and brainfog, but this is worse certain times throughout the day and certain days. I also do struggle to remember things, or even details of an event that just happened.

My mother constantly tells me that because the doctors have told me there is nothing wrong, she does not think I should let it "rule my life". Or that it is really bad enough for it to stop me doing things or that basically it's no big deal its a minor hindrance, at times she even doubts there is anything wrong. My whole family do not believe there is anything wrong, nor doctors, as I have a history of mental illness. I have sat passionately speaking and refuting this to my mother and offered her countless bits of evidence, but she ends up agreeing and then I said you just agree for an easy life, there is no support whatsoever, and she nods. I am not the best person, I suffer with depression and I find it hard to do things, I dont have many friends, but this POTS has now made it even harder because it makes me anxious to go out or to do exercise. It seems because my life was already pretty bad and I was abit of a lost cause no one even cares I have this now, they seem to say, "well if its not one thing its another with you". or "your always not right though you" referring to my depression.

I have now complained to a section of a hospital, but Im slightly worried that if I end up being asked to do sit to stand, my HR wont make the jump 30 bpm it will if Im asked to lay for a couple of minutes but when i stay still a lot of time ive seen it drop down 5bpm, making the jump on 25 bpm not always some days it will hover at 117 and 120 others it doesnt sustain it staying still it drops about 5bpm, I have some pretty bad symptoms apart from that and I pretty much said that this nurse didnt investigate that and that I have signs of it Im also worried that maybe a tilt table test, it wouldnt make the jump and Id look like a fool for pushing this so vehemently, some days however my hr seems to hover at 110-115-120 just sat playing cards.

I guess what Im asking is, should I be fighting this hard for a diagnosis, I mean the other week I went to a concert and I felt quite lightheaded and your natural instinct is to want to sit down, I had to ask for a chair and I sat down all the way through. But I wonder could I have stood up and I was just anxious, about fainting, I know I felt lightheaded and it wasn't panic but what I mean is, is maybe I could have withstood the lightheadedness, but felt abit uncomfortable with the prospect of possibly fainting. Or would I become dizzier the longer I stood up, we are talking a good 2 hours here, so thats 2 hours id be expected to stand up feeling lightheaded. Does this warrant some help of some kind.

My family make me kinda feel like im making a mountain out of a molehill, and I know that I can do most things, but im quite uncomfortable doing them.

What do you guys think?

Thanks Josh....

It might be best at this point to follow your doctor's advice josh. You have gone in, she is aware of your situation and if it persists she is willing to see you again. Hope things will calm down soon!

Yeh going to try corina, but still can't help but worry, and this pain is really uncomfortable I have to admit.

So sorry to hear of your situation. Know that many people, including myself, had a hard time getting diagnosed. My situation: I was "falling" and had no energy. Underwent a cardiac stress test. They ignored the rise in pulse, and continuous drop in BP until it was 82/0 and they tried with 3 BP cuffs to get a blood pressure on me. Finally I took the worksheets to my sister's doctor who got a clue. Went to Cleveland Clinic who ran me through all the tests that showed the problem. This after 2 years of going to doctors trying to get help.

My suggestion: Get another doctor. On first visit, be upfront but do not provide any self-diagnosis. Relate how the symptoms are interfering with your life. Explain that you need help because you need to function.

I have just emailed the Patient and Liason Service with a detailed email, about the contradictions this nurse has made. And they have responded promptly with saying they will investigate and that they have asked the cardiology department to reply asap. So fingers crossed. Although im not holding my breath.

so went to doctor yesterday and she said you wouldnt feel leakage on your chest, so its not that and that my pulse and bp were normal (sat down of course). didnt listen to my heart said to come back if it persists. so i dont know what to think really.

Josh,

I felt similarly when I first got sick and the docs were being supremely unhelpful. I kept th8nking, "Great! While these guys are being arrogant know it alls, I'm dying and none of them care." There even came a point when I had to take a break completely from seeing docs. It lasted for about 6 months, then I was ready to re-approach the situation. (I'm not advocating not seeing a doc if you need one.) Just know that it's normal to have these feelings when you aren't getting answers.

I was much more stable emotionally once I started to get some answers because I didn't feel so out of control, and, I knew I wasn't dying. The fear of the unknown was terrible for me.

We are always here to lend you support when you need us.

Katie

Thanks for the response katie, I think I dont handle things very well, prior to all this I did suffer panic attacks. I've had this pain about 4 days now, and now intermittently Im getting this very sharp twinge, near my heart, or on my heart I also get a sort of ache pain in my back. As well as a knotty feeling there aswell. My family who I wanted to take me to accident and emergency today, all insist I am fine and not going to die, based on the work up I had 6 months ago. So I've held out another day, I haven't blacked out but it is a general feeling of constant discomfort also with the wetness, and then twinges had about 20 today I think. I feel like an idiot going to a&e. Tired of the lack of support from family based on what doctors say, If I go to my primary care doctor, gp here. They will as they have before say, something along the lines of " You've been checked out or something and maybe book an ecg"

Should I go to a&e with this or just go to my doctor?

thanks, I dont get it anywhere but right near my heart though and it comes with accompanying pain, I have never felt so scared and depressed in all my life its just like there is no help for me and Im waiting to die, Im so sick of trying to convince doctors. :'(

I need a new gp this one is terrible, im worried its pulmonary edema, or embolism, and I fear with my work up in september no ones going to take it seriously I mean my pulse is normal id guess an ecg, wouldnt show much now anyway I do feel it in my back aswell and I havent actually done anything for it to ache and the wet feeling isnt really explained, although Ive had the wet feeling for a while on and off, and I had it when I was in hospital an echo would have shown fluid right? and fluid doesnt wax and wane, I just dont know what this could be, I will go back to the doctor but I dont think he'll do anything I think he'll say "youve been checked out".

I am a real worrier, for these kinds of things, but Ive never seen anyone here talk about cold wet feelings on there chest with sharp stabbing burning chest pain.

My understanding is that it may or may not progress and that usually progression would have some cause, like EDS. I can't say for sure but I don't get the impression it is an issue that waxes and wanes so that they may not see the severity. I think it is the kind of thing that exists and may get worse over time but it's not on and off.

I can't remember if you are in the US or the UK. I know here in the US, it would be acceptable to call a doc for clarification even if they have discharged you. I don't know if it would be different in the UK because it is a socialized system.

For what it's worth, my doc said the same thing...that most people have some small amount of leakage that they never even know about because most never have a need for an echo. She told me that mine, because it is mild, would be considered an incidental finding. If I didn't need an echo to check my aortic root for enlargement due to my EDS diagnosis, she wouldn't order a yearly echo just for this level of regurgitation.

I have to say this is really worrying me im now getting a sharp twinge pain to go along with it very bad pain and i can feel it dripping and wet.

Josh,

I do have mild regurgitation from 2 of my valves that each have mild prolapse (which is common for EDS patients). I do not experience any symptoms related to this. My understanding is that there are "levels" or "grades" of severity of this leakage/regurgitation. Mine is very mild and my cardio has said it's nothing to be concerned about. Because I do have EDS, we do an echo annually to check everything out, especially my aortic root.

I think I would ask the doc to explain what the relative severity of your leakage is so you can have some peace of mind and have an understanding of whether this is an issue that needs to be monitored going forward.

hey thanks for reply kb, the impression i got was its nothing to be worried about everyone has some was what she said, they didnt put it in the report, can this progress or perhaps been caught at a time it isnt as bad im wondering? im not sure i can talk to the cardio still as they have dismissed me now?

Josh,

Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there!

I had an event monitor it showed ectopic beats, what Im kind of worried about is wether this is to do with the valve leakage, I had an echo done and they said I had slight leakage, this is just really weird wet feeling and its always near the heart, it also burns sometimes. :/

Im not actually under a cardiologist now they pretty much discharged me because everything was normal this was a few months ago now though and Im wondering if it is progressing, obviously a lot of pots symptoms overlap with leaky valve, and I cant get them to recognize that I have pots either :/

They pretty much discharged me so i have to go back to gp now.

If you still have questions and concerns you might think about a second opinion with another cardiologist. No fun I know! Hope you are having a better day.

it is really difficult to get that here, they have pretty much dismissed me now as fine, i did have an echo and was informally told i had slight leakage, but as i say what is this burning wet feeling always on the left side of chest? what could it be related to but that?

I think I may have posted this before but I had an echo and they said that I had some slight leakage but that everybody has leakage, but I find I get on the left side of chest a wet dripping feeling alot, and Im wondering if thats related, if so how reliable is the echo that the leakage isnt bad, or is it just based on that time, mind you, they also dont think I have pots and think 200bpm on a stress test is fine, I find I get all sorts of discomfort in my left side of chest in the heart area, but this wet feeling/cold is really weird.

I have a strong suspicion my pots is related to mitochondrial damage related to a side effect of a drug and Im wondering how differnt the treatment is or wether this will be acknowledge if i eventually get to a specialist?

Hi, I've noticed my short term memory is pretty bad, and Im wondering if there is anyway to improve it, I know it is to do with this, because I never had it before? It's kind of upsetting because gosh is there anything this **** disease doesnt effect? I play poker online for a living and where it doesnt massively affect it, it does to some degree, has anyone got any foods/supplements that they have found helped their brain fog.