scared I have long QT syndrome

[Eek]

every time I wake up during the night or in the morning, my chest feels funny for a minute or so, I'm scared it's long QT syndrome and I'm going to die in my sleep I have had cardiac fears for over a year on and off but this recent bout is driving me nuts. I have a doctor's appointment for monday if I survive that long about something else so I'm going to mention these weird feelings to him when I'm done.

[NoMoreLongQT]

Tell your doctor exactly what and when you are having these feelings in your chest. It is very important that your doctor take your symptom seriously and at least do an ECG on you. Also it is important that the doctor not just let the software on the ECG machine interpret the results, but the doctor needs to know how to hand measure things like QTc and other things that could indicate a problem with the electrical conduction system of the heart. I've been studying this for 15 years since losing my daughter to undiagnosed Congenital Long QT Syndrome, a totally treatable condition if diagnosed and treated properly. I'm also an R.N. by education. I try to help people who are experiencing issues with their hearts, as I don't want what happened to me to happen to anyone else. In the U.S. when you are diagnosed with something like Congenital Long QT Syndrome, you are then treated by a sub-specialty of cardiology called an electrophysiologist--or as it is abbreviated here in the U.S. an "EP". Let us know what you learn after your doctor's visit. I am not saying you have this heart condition in any way, but I have heard of people being diagnosed with "panic disorder" that actually have CLQTS. Good Luck with that!

[lo89]

I do not think that response is at all helpful to a health anxiety sufferer.
Eek, stay off google. I am sure your heart is fine but go to a doctors and get checked out if you are really worried. I'm sure it iw probably caused by panic, but better safe than sorry.

[Eek]

Thank you lo89 I'm hoping it's just anxiety, but I get it every time I wake up before even have time to worry it's very scary. It does feel a bit like an adrenalin rush, so I guess it could be caused by my being generally anxious, I just don't know, but I will mention it to my doctor. It's just really freaking me out at the moment, my anxiety is through the roof.

[cassy1989]

Maybe the response wasn't helpful to a health anxiety sufferer but its from a person who has lost their daughter and knows a lot about long qt by the sounds of it and it wasn't said in a malicious way, it was said to genuinely help. Just because we are health anxiety sufferers it doesn't mean we are actually immune to illness! So eek you should get it checked at the drs because they are the professionals not us! But I am pretty sure it is just anxiety just better to be safe. Xx

[lo89]

To me it seems as though the poster has googled 'long QT syndrime' and registered on multiple forums - the user name and fact they have only posted once imply this. Whilst they clearly have a good understanding about long QT syndrome, it is really not helpful for someone to, first of all mention that a family member has died of that to a HA sufferer, and secondly, to imply that it is commonly misdiagnosed. I, for one, have issues trusting doctors already, and although I do not worry about my heart at all, if this post was related to something which I worry about (say melanoma, as it is my main worry!) I would be petrified.
Registering on a panic forum where people are worrying about their health (come on, how many of us have actually had any of the real illnesses which we were worried about!) and then telling people that there is a good chance that they have the deadly illness which they are worrying about is unhelpful.
Your doctor will be able to reassure you if nothing is wrong. Go get it tested, but have it in your mind that it is rare and treatable.

[Eek]

Well I went to the doctor and he told me that the ECG I had a year ago would have picked it up if I had it. He's sure it's just anxiety but I'm not convinced, but he wouldn't give me another ECG. I'm getting blood work done for something else so when I get the results I might again ask for an ECG as it really doesn't feel like anxiety and I"m getting scared to go to sleep at night.

[Kez_miller]

Okay firstly, i totally agree that the post about the dying family member and misdiagnosis was really not helpful for a HA sufferer...that makes anyone more anxious...and for a registered R.N (apparently) to be saying this, is absolute stupidity...which in this case makes me wonder along with only the 1 post...anyway onto your good self Eek...the main symptom of long QT disorder is actually fainting....fainting when working out, or fainting when heightened emotions such as anger....also your DR is right, long QT syndrome is not something that just comes on over night and would with out a shadow of a doubt have been picked up on a ECG only 12 months ago...if their was ANY problem at all something would have shown and they would have investigated it further, for a DR to refuse running an ECG he must be 100000000% confident that there is nothing there except anxiety :)

hope u feel better soon, good luck.

[Eek]

Thank you Kieran, I just wish I could believe that it was anxiety :weep: I'm still really worried that these weird feelings are something wrong with my heart. Got to hate HA.

[Pinktel]

Yes, the long QT would have been picked up because the corrected interval is a simple equation that the monitors carry out anyway depending on your current heart rate - it's not rocket science. If you are that worried, ask your GP if the readings from your ECG before are accessible, look on the printout and you should see a number for the QT and a number for the QTc. You can then ask the doctor what normal intervals are and compare yours to these. I guarantee you will be fine because the interval is either too long or not - if your doctor is saying the measurement was fine then you have to believe what you are being told.
I had this concern (for about 15 years!) and in the end I asked for the actual numbers - found out what normal measurements were - compared mine to this and realised I was totally within normal limits. At that point all doubt was removed and there was no way I could pretend to myself any more.
In addition to this, if you have never blacked out and there has been no sudden deaths in your family, the chances of it decrease further to REALLY REALLY tiny!
Once you have realised you have a structurally normal heart the next thing is to keep it that way and look after it! Exercise, good diet, no smoking/drinking etc. This really gives me a positive focus with my heart concerns.
Some CBT could be of real value to you, could you ask your GP about it?

[Eek]

Pinktel, I have therapy every couple of weeks with a psychologist it's not really helping. I get these weird feelings in my chest every time I wake up, night time or morning it's getting to the point I'm scared to go to sleep, how can this be anxiety? You'd think if it was anxiety it wouldn't happen every time. I'm terrified there's something electrical wrong with my heart that's causing this and that one morning it'll kill me.

[Pinktel]

Firstly perhaps you should change psychologist - it can take visiting a few before you click with one - don't think you have to stick with the first one you visit.
What are the feelings you get exactly?
I would expect anxiety to absolutely hit EVERY time - it is the most habitual emotion, your brain will train your body very nicely indeed to feel a certain set of symptoms in a certain specific situation - you wouldn't believe how good it is at doing that!!! This is EXACTLY how I would expect anxiety to work - this is why I feel sure it IS anxiety.

Now if there were some fibrillation or arrythmia I think you would feel very uncomfortable symptoms all day long, not just upon waking up.

If i remember correctly there is a long QT variation which happens upon waking - i think this may be what you have fixated upon? HOwever, if you had this it would still have already been picked up on in previous ecgs - and as I say, you could even request the readings to really put your mind at rest. Also, the symptoms would be syncope upon waking - not the symptoms you seem to be feeling. I think a little research under the guidance of your GP could do an awful lot to rid you of your very specific concern regarding long QT -because, as I say, you either have it or you don't - it is very definite to examine your readings and dismiss your fears immediately.

Hope this helps

[Eek]

Yes you're right I read that there is a Long QT variation that causes symptoms on waking. It's hard to describe the symptoms I'm getting. It's in my chest and I also feel a bit shaky if I sit up but it passes very quickly. It's a bit like an adrenalin surge and a bit like palpitations and my heart rate goes up. It just feels very weird and scary. There isn't a copy of my ECG as it was done at the ER I've never had one done by my doctor but they told me at the ER that everything was fine I just had sinus tachycardia.

I guess I'm just worried that something bad is happening to my heart as I sleep.

[Pinktel]

Sounds very similar to symptoms I have upon waking sometimes - and also many other people on this forum if you do a search on racing heart upon waking or something along those lines.
perhaps your GP would give you a 3 minute ecg to allay your very specific fear as you could instantly see your readings?

[Eek]

I spoke to my GP today and he reiterated that he thought it was anxiety and would not give me an ECG :weep: So I'm still left worried and scared to go to sleep because of these symptoms.

[NoMoreLongQT]

I am not trying to scare anyone, but I've been studying Congenital Long QT Syndrome for over 15 years. It is not easy to diagnose, and CANNOT be ruled out by one ECG alone. I think this would be worth looking into further. Two cardiologists missed my daughter's abnormal Holter monitor, and now unfortunately it is too late for her. Again, I'm not trying to scare anyone, but doctors in general seem to know very little about CLQTS. Do you have a history of tachycardia, fainting, an intolerance to exercise, being extra short of breath when exercising, have a "racing" heart with exercise, etc.??? Again, this is not an easy condition to diagnose, not even in the medical community. You may not have it, but from what you are describing it sounds like it needs to be looked into further. When you wake up is your mind racing to what you need to do that day, dreading it, etc? Just curious. Do you feel it is anxiety related, or do you have it before you even have a chance to think about what the day will bring, etc.???

[Eek]

I have a history of tachycardia but it's only with anxiety, my heartrate seems fine normally and even goes as low as 60 when resting. I don't have any history of fainting or intolerance to exercise or being short of breath when exercising and my heart rate goes up with exercise but I wouldn't say it raced. I also don't have any family history of sudden deaths. It's just really these morning feelings, I read that there is a morning form of Long QT and became worried that this could be what is causing my symptoms. It's probably my health anxiety talking when I think it could be a rare disease like this and these symptoms have only started recently. I'm 48 so I would imagine I would have had them before now if it was Long QT but if you've read this board you will see that we all tend to catastrophise our symptoms when we get them.

Thank you for taking the time to answer the post, I am still worried about these symptoms and what is causing them, but as my doctor has refused an ECG he said my symptoms are not a red flag for anything, there's not a lot more I can do but hope it's actually anxiety.