Well I'm a 27 year old female, and after an event in work had a two year journey of being told I have anxiety to get to this point.
Firstly I don't mean to scare anyone who has been told they have anxiety as for the vast majority is true, so try not worry :)
Last year I had tests at a cardiologist I had a heart echo ; normal, blood tests :normal except my cholesterol was up but this was due to the amount of milk I was drinking as a nurse said it can be calming :) I had a halter heart rate was high normal and nothing spotted.
I was prescribed ssri's which made me feel horrendous, I had a 'rare reaction which resulted in me thinking I was imagining these symptoms and my heart wasn't skipping beating funny etc...... I volunteered to go into a psychiatric ward for a week to have a ssri change plus I though it was all in my head I didn't understand and felt no one believed me. (please don't think I'm batty :) I am sane it was a reaction to the ssri:))
3 ssri's laterand I still felt awful bp would drop heart rate felt either pounding or slow but I plodded on went back to university and so on
Fast forward to last month, my dad told me that his sons from a previous marriage had children who had an event at school and the doctor decided to test her for long qt which she has. I live in the UK and they have a fab genetics center in liverpool so they tested my dad and he is positive for lqt version 1he didn't want to tell me this was going on as it may kick off my 'anxiety' well I had another ecg and my qt was 498 but my rhythm was fine.
I went back to the cardiologist who tested my qt ; which was long but my recovery qt was good. He said he found these pvc's I was feeling (which I was happy with as I though I was imaging them :)) but I only had 5 in 48hours.
He has put meon a beta blocker and I have an opportunity for this Thursday fit a loop recorder.
Ok so my questions are
1 has anyone got lqt who is on beta blockers, do they help you?
2 my heart rate is really slow since taking the tablets as low as 40's when I first wake up and 54 in the day I don't feel ligheaded with this at all just more tired and I suppose I would feel it was that low if I didn't check it
3 has anyone had a loop fitted? Was the opportunity painful
4 is lqt1 manageable for a normal life length?
5 any advise on good habits together into with this condition
If you read this thank you :) I'm trying to remain positive
I was worked up for LQTS this year and have learned a lot about it and will try and answer your questions.
1) I know many folks who have LQTS and BB are the first line of defense for type 1- statistics show BB reduce the risk of having an event by more than 50%. Some BB have also been shown to reduce the QTc interval.
2) many people experience side effects from BB and sometimes these improve over time while in other cases the individual has trouble tolerating them. There are several different BB that can be used for LQTS, if an adjustment in medication is needed.
3) can't answer this one.
4) ABSOLUTELY!!!! The risk of a SAD is very unlikely once the condition has been diagnosed and person treated.
5) find an EP in your area who has experience treating LQTS. Contact the SADS foundation in your area for a referral. Do not take medications on the "list", eat lots of potassium in your diet. Get a medic alert bracelet. If you are on Facebook, search LQTS and you will find several closed groups that you can join where you will learn a LOT about this condition.
Finally, a few questions for you. Have you had a stress test, and have you had a genetic test for LQTS? The stress test will determine if exercise might potentially trigger an event for you and the genetic test will determine if you actually have LQTS. It's possible you have/had acquired LQTS due to taking SSRIs which elongates the QTc interval.
- acquired LQTS is very different from congenital LQTS and it shouldn't be assumed that you have cLQTS based on an abnormal EKG and positive genetic test in your dad (I dont the specifics in your case but wanted to throw this out there in "case" an assumption was made)
I haven't has a stress test done it seems mine is triggered by emotions although I can't go swimming or go running on my own. Although not really my adult life but all through my teens I was extremely sporty I did sports studies was in all the after school teams and was in a dance group in the evening I never seemed tohave problems.
They took me off ssri's about 6-8 months before all this so unfortunately it isn't acquired as I have no other medication. The fact I reacted as I did indicated on it lengthened my qt longer.
Yes I have had my bloods done at the genetics place, they have been fantastic, they have been honest and said with my background and symptoms they would be extremely surprised so much so that if my result comes back negative for version 1 they will test me for the rest so we're hoping out of them all its version 1
My dad, his sons (triplets) their kids my dad's brothers and sisters (5) all have the gene bar one, the children and myself so far are symptomatic.
I never thought to get a bracelet great idea! I mean I feel lucky in a way that I'm able to find out I have it before a major event happened and have a chance of reducing my chances but I'm glad (although is at riskstill) that most of my family and my dad are at an age were this has a high chance of ever being a problem for them :)
Really thank you for the reply its helps alot :) take care
Many of the worlds experts are now saying that it is appropriate to lift many of the "exercise restrictions" of those with LQTS PROVIDED they are receiving appropriate treatment ((BB and/or ICD) and an AED is at hand. This is one of the reasons why it is so important to find a real expert in the area as many doctors are not up-to-date on current recommendations and tend to make life-altering treatment plans. A stress test is important to find out what your QTc does during exercise and in the recovery phase- there are many people with LQTS1 whose QTc shortens during exercise (so exercise is not a trigger).
Some folks with LQTS, especially LQTS1, have a QTc interval that fails to shorten during a stress test/recovery period and the QTc may even get longer under these circumstances. Measuring QT at high heart rates is very difficult and the formulas used to correct QT (convert into QTc) tend to not be very accurate at high heart rates.
An EKG will "sometimes" show certain characteristics in a individual with LQTS. QTc interval and notching of t-waves can be suggestive of LQTS BUT some individuals with LQTS have completely normal EKGs.
I got my results back today (had my blood taken 4 weeks ago) and I do have the genetic lqt1. Mine did show on my ecg the measure your q - t interval which are two points on your ecg mine was 498 can't remember what my recovery qt was but it's not a deciding factor as it's different for all that's why I had a genetics test its just a spelling mistakes in my email :)
Yeah I think I will ask for a stress test going to leave it a Lil while as I'm getting married in 4 weeks so ill do it after I'm not planning on much exercise in the next few weeks.
They also said that if I want children then they can test your egg and only developed one without lqts its all done in the lab and not what I wanted but if it means that it stops with me and goes no further I feel it's kinda my responsibility to do it in a way sounds stupid I know :)
I hope I get my head round this soon feel like a ticking time bomb but I suppose feeling sorry for myself won't help....... Need to give my head a wobble :) I just keep on reminding myself that my genes may be dodgy but without them I wouldn't be here in the first place....... I'm sure it will sink in soon lol so how do u all keep positive?
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