QT syndrome

[angel343]

hi everyone im new to this. i am just turned 60 i suffered a heart attack 5years ago have three stents. i have been diagnosed recently with QT syndrome was wondering if anyone else has this condition or know anything about it. its nice to be able to not feel so alone this lockdown has been very isolating havent been out properly yet due to being sheilding. hope you are all ok.

[MichaelJH Heart Star]

Hello and welcome to the forum! I know only a little about it and think it is worth you reading the BHF write up:

bhf.org.uk/informationsuppo...

If you then need further information it is probably worth ringing the BHF nurses next week.

The forum is a little quiet today but someone with the condition may be along later or tomorrow.

Whilst we are isolating it's worth looking for virtual events. I have attended two one man concerts, two virtual classic car shows (Classics for Carers) and the Hertfordshire County Show!

[angel343 in reply to MichaelJH]

thankyou for your responce michael. take care

[bee2]

Hi angel343 I have acquired Long QT syndrome. I have to watch all medications and continually check with doctors and then pharmacist that meds are ok for me to take. I also have other heart conditions so never sure what is causing what. I have been going out for shopping and excercise through lockdown so more normal for me .

[angel343 in reply to bee2]

hi bee2 thankyou for your reply im glad youve been able to get out. i had a angiagram last week and monitors on for three days. i like yourself have heart condition also, had heart attack 5 years ag and three stents so on many meds its only over the last year my health has deteriorated and i dont know if it is the QT . Should hopefully hear something soon take care.

[sturon]

Hi. Welcome to the forum.

My hubby has long QT Syndrome so we know a little about the does and don'ts. The condition is caused by the exchange of electrolytes within the heart, this essentially slows the resting phase of the heart. You can find lots on Google, but as others will say you are better to chat to your GP or a cardiac nurse, this can be done on the phone.

One thing you must do is always check any medication you are taking as some can prolong the QT interval further. Your GP should always check before prescribing. You can find a list of drugs on Google to avoid. Some are very common drugs like certain antibiotics.

My hubby has an implanted defibrillator now, which has never gone off, but there as a precaution.

You don't say how you were diagnosed with this but if you haven't seen a cardiologist check with your GP if you should be seen.

Always here to chat and hope this is of some help. You are never alone when you are on this forum.

[angel343 in reply to sturon]

thankyou so much sturon. i got diagnosed last year last week i had a angiagram and monitors on for three days so im waiting for results. a pacemaker has been mentioned or a difibrilator so im keeping my fingers crossed for something to help. i caught coronavirus in march and it has left me in total exhaustion, also my dog died within a couple of days in my arms and i thought she had got it also but couldnt do anything about it my son had to take her to the vets to be cremated. So dont know if why im feely so out of sorts is due to QT has seem to be having weird heart beats. we are all going through stressful times at the moment and this can have a effect on your health. im so glad i found this forum it is a very good site wish id joined earlier. Take care and thankyou for your advice.

[sturon in reply to angel343]

You are having a bad time of things. Like you, we both had the symptoms of the virus in March after a rescue flight for our holidays. We were not tested as we were not in hospital. We have both only just about recovered after all this time. We have asked our GP if we can have the antibody test as we are both due our annual review. They are still considering our request.

Your dog having passed away at this time also adds to the stress levels.

You should talk to your GP about a cardiology appointment and if offered an ICD / S-ICD or pacemaker go for it. It will give you peace of mind. They will only offer you it if they think you need it. My Husband did need it, after suffering two cardiac arrests. Since then we have got on with life as normal. Well until March of this year !!! Nothing is normal now.

Good luck and keep us informed of your progress.

[angel343 in reply to sturon]

thankyou for your reply sturon, when i had my angiogram last week the doctor told me he had also had the virus im march and went for antibody test so he could give plasma, however he said he didnt have enough antibodies he told me that because i had it in march it maybe not show any antibodies due to the time relapse, i have been wanting to get one but not sure now. It is a very stressful time for so many and lockdown has effected lots of people my heart goes out to anyone who is on their own going through this. Hopefully things will get better for everyone. At least there are forums like this where we can support one another, Take care thanks for your input.

[angel343 in reply to sturon]

hi sturon just letting you know i got admitted into hospital on thursday by doctor. went to see her heart wasnt beating right. came out of hospital yesterday was told covid 19 effects the body and can take months to get better. im not sure whats going on but they have stopped my bisoporol and ramipril cause my blood pressure went to 55. dont understand whats happening. just got to get on with it . i hope you and your husband are doing ok. x

[sturon in reply to angel343]

This must be a really worrying time for you. One good thing is your doctor is taking your illness seriously and you got checked out at the hospital. They must be happy with how you are or you wouldn't be at home now.

We found at first when my husband had his two cardiac arrests we had to take each day at a time. He was in hospital for 3 weeks and in ICU at first. It took us months to get over the shock and now we live life to the full. Well we did until COVID struck.

Keep a positive mind set and look to the future is our way of life now - live for the moment.

You will get through this just rest and recover. Then talk to your doctor about future interventions like an ICD, or medication. Now you are at home book a telephone appointment with your GP to review what the hospital have said in your discharge letter. We found we had to take control of the situation rather than waiting for our GP.

Good luck and keep in touch.

[bee2]

Sorry to hear about your dog and I think it has more of an impact at this time. I read an article earlier today somewhere about covid affecting peoples hearts, I'm sure the study was sponsored by BHF too. Hopefully as you say you will hear back soon and get the answers and treatment you need x

[angel343 in reply to bee2]

thanks bee2 hopefully things will start to get better for all of us so many people have had to go through harrowing times. Its such a good thing there is this forum to support each other. Take care x

[Palpman]

LQTS is typically diagnosed from 500ms and it can surpass 800ms.

Normal is 450ms max.

Most antiarrhythmic, antidepressants and antihistamines can cause a slight increase in QTc. Mine typically goes to 470ms with antidepressants and need 12 lead EKG" s done on a regular basis to check QTc.

The EKG machine will print the QTc on the top part of the trace.

[angel343 in reply to Palpman]

that information is vey helpful i dont know much about it other than was informed i had it and asked if anyone in the family had it. Just waiting for results from monitor had it on for 3 days and had a echocariogram. had one before after the heart attack they mentioned a pacemaker but will wait and see. Just wondered if extreme fatigue is a symptom of it cause feel exhausted all the time. Hope you are doing ok do you have to take any meds for the QT. thankyou take care.

[Palpman in reply to angel343]

The first physical signs of LQTS is tachycardia and possibly fainting when the duration gets too long and interferes with repolarization.

I had to stop Sertraline to get the duration shorter than my 470ms and have not yet had it checked. I also have not heard of any medication to shorten LQT.

[angel343 in reply to Palpman]

thankyou for your information palpman. i have withdrawn from sertraline but the withdrawals are terrible feels very dizzy and like im going to faint. Doctors have rung this morning i have a telephone appointment tomorrow morning. Just want to feel normal i have no energy whatsoever. Im trying to stay positive but sometimes its hard, hope you are coping with your condition. Take care.

[Palpman in reply to angel343]

I took half tablet for a week and a quarter the following week. No problems at all. This was for the Sertraline but the anxiety tablets were bad. Took me 4 weeks of sweats and pacing the passage at home. I was on them for 30 odd years.

[angel343 in reply to Palpman]

that must have been hell of a four weeks for you. i did reduce to half then a quarter but since stopping three days ago the effects are awful. Hopefully it gets better. You did really well. thanks for your responce.

[Hidden]

Hi Angel, read your post about water retention l have been on Bumetanide, Furosemide,and now Torasemide, but nothing seems to shift the water in my feet, legs, thighs, and it is so depressing, have you had any success in getting rid of your water retention, if so do let me know and how, many thanks x

[angel343]

hi Lind111 i have ongoing problems with this however doctor told me when fluid builds up too much to double up on my frusemide now taking 2 x 40mg today. The water has now started gushing out so after rest i will go back to my 40mg tomorrow. it is very depressing i totally understand where your coming from. I have managed to have a small four day break which was great but knew the fluid was building up so today just resting and trying to get rid of all the fluid build up. The 2 tablets are working for me today but dont want this everyday. Last time this happened i was admitted into hospital and had a drip inserted to get rid of the fluid build up. This hopefully seems to be working. i hope things get better for you and you find a way of something working for you. good luck take care. Xx