New and Very Scared

[baby_boy]

Hi everyone.

Firstly, Im 20 Male from the UK. I have had anxiety ever scince i could remember, i always thought there was something wrong with me. I developed a form of tachycardia about 2 and a half years ago, my heartrate would race for no reason ect. I went the doctors and they insisted i was fine and told me im more aware of my HR then most. I passed all the blood test and through a stetascope my HR was fine. 2 and a Half years on i still have tachycardia daily and other symptoms, of which are:

- Slow HR upon standing, sometimes i feel like im gonna pass out but never have

- Stomach Pains and Bad Wind

- Anxiety and severe panic attaks

- Dizzyness

- Pain in my lower back

- Tiredness

- Chest Pain

+ The Usual Anxiety related stuff and more that i forgot about.

When you get scared your HR should go fast, but mine goes slow then fast. When i stand up i feel like my HR goes : BUMBUM, BUMBUM, BUM..BUM, BUUM...,BUMBUM, BUMBUM, like its missing beats. I had an ECG and they said my left artrium was a bit muscular then should be but isnt harmful and many people live with it undetected.

These symtoms really scare me, ive got a feeling if i had a tilt table test i would fail it. Its really horrible and for a 20 year old having to live like this day in day out it isnt nice, i cant do what normal people do cos im scared to death.

Thanks in advanced for all your support and related storys.

[april abbott]

Welcome. I am new here too so I am in the learning process. I can tell you that this board had been VERY helpful because I am finally learning that other people are having the same scary symptoms that we are and yes, we are still going. I have had very similar symptoms. Most of us have. My heart rate generally stays really high now but in the beginning I had days where it would go really fast one minute and the next minute it would go really slow and hard and would skip or double up beats. I have woke up from a peaceful sleep many times with my heart rate racing like mad for no reason and that is scarey too. You didn't say what kind of doctor you have seen, what you have been diagnosed with, if anything, or if you are on meds.

For many of us it has taken many, many doctor visits, many years, and a huge amount of tests before being diagnosed. You have to find the right doctor before you can begin a good treatment. For me, like many others, it was a cardiologist that was the good one and he diagnosed me with a tilt table test.

The bottom line is that you need to see a doctor and, unfortunately, your doctor might have to do some other tests to rule out some other possibilites because your symptoms could mean a number of things, not just dysautonomia. But I can tell you that we are all familiar with getting back all the bloodwork, scans, holter results, EKG results and hearing "everything is normal" because those kinds of tests are not going to diagnose dysautonomia.

Good luck and find a doctor that is compassionate and that you can trust because that will make a big difference in the outcome. Take your symptoms seriously and get treatment a.s.a.p but try not to stay so anxious. I know it is hard because these symptoms are scarey but believe me, so many of us deal with it on a daily basis and we have all learned at one time or another that we can live with it.

[Poohbear]

Welcome to the site! I hope you are able to find some answers here.

Unfortunately, it can be a battle finding the right Dr's to work with and getting all the appropriate testing. Further complicating things is the fact that the symptoms you list are also symptoms of anxiety/panic disorder. Many of us do have these symptoms as well. Sometimes it's hard for Dr's to figure out if anxiety is responsible for your symptoms or if the anxiety is secondary to something else causing those symptoms. It can make some difference trying to get this distinguished because it would change the approach of medications tried first.

Do you have any idea what your heart rate actually is during these episodes you describe?

Have you tried any medications at all? If so, what was the effect?

[calypso]

You need to have a tilt table test to be diagnosed with POTS. A slow then fast heart rate upon standing? Hmmm ... don't know if that qualifies. How fast does your heart go? Does it increase 30 or more beats per minute?

I also have anxiety -- pre-existing to my POTS. I do know that now that I've had both, they are not similar in how they make me feel. I feel actually sick with POTS, but with anxiety I felt anxious, sometimes dizzy and fatigued a lot. So yes, anxiety can make you feel what you're feeling. Are you being treated with psychotherapy and/or medication? It's important not to let anxiety run your life and to get appropriate therapy.

Amy

[morgan617]

Welcome Baby Boy, if it's any comfort I've had symptoms similar to yours since before your age and I'm fifty. The point is, this isn't going to kill you. Hopefully that will relieve a little of the anxiety, since a lot of the younger people really believe it's going to kill them.

I have a touch of anxiety, but do not have panic or anxiety attacks, maybe because I was a nurse for so long, or something, I don't know. Panic attacks can be treated with therapy, biofeed back methods and or drugs, or a combination of these.

However as stated above, Is it the chicken or the egg. Which sets off which. Every single person on this board has symptoms similar to or just like yours. Since you are in the UK, I know it's harder to get into specialists, from what I've read. But Persephone and others are there and may be able to guide you in that direction. A good cardiologist that has some understanding of dysautonomia can help you. What every one here has said is true, lots of tests, lots of "you're normals" or "You're crazys" So you will need to develop a thick skin and just keep pressing them. In the mean time, You need to believe that none of this will kill you. It may make you feel like it at times, but the surges you are getting can only last a certain amount of time before your body has to rest. That's why panic attacks generally don't last a long time, even though it feels like forever.

When I first realized I was getting rushes and didn't know what the heck was going on, I just went with them until I figured out what was going to happen next. First I get a sinking feeling, then I feel sick, then I get arrythmias, then my bp goes way up, then I feel awful, then I get really flushed, then I start feeling better. So I got to where I knew what was going to happen and about how long and would tell myself, okay I'm in this part of it, now comes the next part, then it's halfway gone, and now it's going to settle down etc, so I was keeping myself busy with what was going on, knowing it was going to let up and talking myself through them. Then I didn't really think about getting anxious, it was more a matter of fact thing. OKay this is what my body is going to do now and it will all be over in this amount of time.

The arrythmias are a bit different, but the same process. You can have them for awhile, if they make you light headed, then sit or lie down. If you can, but realize, they are not life threatening and they will let up. Every one has arrythmias, we're just more sensitive to them than most people.

I hope this helps a little. Welcome, I think you will find this site helpful. You might read some of the people's stories and see your life right in there. The important thing is getting yourself a doctor familiar with this disease. Good luck, morgan

[Sunfish]

Hello & welcome -

Others have already posted a lot of what I would say, but I just wanted to say hello & to tell you to hang in there the best you can. I KNOW - as do many on the site - how tough it is not be "normal" (whatever that is). I'm 25 & was diagnosed at 17, with some problems before that. You'll find lots of stories that you may be able to relate to, at least in part, throughout the site. And while it's important to get things checked out & diagnosed as much as possible, you can take comfort in the fact that lots of symptoms that are very scary are not actually dangerous in a life-threatening way. Obviously that doesn't mean they "feel" any better, but it's still good to know at times.

Regarding your slow heart rate, I had that problem when initially diagnosed & still do at times (my heart rate dropping upon standing)...there is a lot of grey area at times between different diagnoses but a lower heart rate can sometimes be part of Neurocardiogenic Syncope, even if you don't actually get to the point of passing out. Like others have said, though, there are other things that look like dysautonomia (and vis versa), so do what you can to get checked out by a doc as thoroughly as possible....and don't be scared by tests they run; they always have to test for lots of "extra" stuff to rule things out.

hang in there,

:-)melissa

[Ernie]

Hi,

Welcome to the forum. You can go to prof Mathias or Prof Kenny for testing. They are the best in UK.

Ernie

[hayley]

hi, im also from the uk.which part are you from.I just wondered have you seen any specialists for your symptoms.

take care.

h x