Long QT Syndrome worry - seizures for 17 years.

[helpplease20]

Hi all. Really long post, I apologize. I'm 20 years old and since I was 3 years old I've had faints/mainly seizures. The first time it happened at 3 I had a temperature. Since then I've had a seizure at least every year, apart from once when I went around 2 years without one.

Since 3 I've had seizures randomly. However have also had one whilst running (twice) one was a seizure one was a faint, when I was on a trampoline, when on a bouncy castle, whilst sat on a bus, whilst sat eating a meal. I also had a seizure once when I was extremely scared and once when I was extremely upset but now they do occur randomly most of the time - I haven't had a seizure for a particular reason in a long time.

Most recently my last seizure was 3 months ago at 4am when I woke up with a leg cramp (wasn't particularly painful or anything, it may have just been coincidence) I got up and walked about then had one.

I have around 5 seconds before I seizure that I know I'm going to have one - then I have a fuzzy feeling in my head and collapse.

My dad passes out vary rarely with pain he cannot tolerate. My auntie used to have seizures/pass out but she grew out of it, whilst my other aunt rarely passes out but has been known to.

I've had:

Several ecgs - probably 20+

A holter monitor

An echo

A tilt table test

Two MRI brain scans

EEG

All tests were clear - nothing has been found to cause my seizures.

Until recently nothing was found on the tests, they've now seen sinus tachycardia and second degree type 1 heart block on my 4 day holter monitor.

So, after looking online and by chance finding Long QT and worryingly sounding similar to my situation, I'm worried I could have it.

The only test I haven't had is a stress test. I was recently in hospital overnight hooked up to an ecg monitor overnight and my heart rate went to 177 and I could feel my heart pounding - it was really random I woke in the middle of the night then my heart began to race, the senior doctor looked at the ECG during this time and said all that was noted was Sinus Tachycardia and mentioned the ECG to be normal. She also didn't mention Long QT Syndrome - I literally randomly found this condition online and it petrified me because blackouts can be caused when scared etc. (although this doesn't happen too often for me, but still, they have happened when scared and after exercise.)

Anyway, I mentioned not having the stress test to my GP and he said I don't really need it as it would be the same result as when my heart rate was going 177, does this sound correct?

Does anybody have any advice? Does anybody think it sounds like I have it?

To explain the hospital situation - I was falling asleep and woke up breathless like I'd stopped breathing for a second, so i woke up like in a shock (this happens often) it's like just as I'm dropping off I'll wake myself up in a worry and gasp a little. I think it just panicked me in hospital more so than usual so my heart kept on racing. At home when it happens it stops after a few seconds and I just go back to sleep.

I'm currently petrified I'm going to have a sudden cardiac arrest!! I feel like I'm a time bomb waiting to go off.

My cardiologist has never mentioned this condition to me.

Thank you, for any advice at all.

X

[Bulver]

Good morning, I have little experience of the symptoms you have, except that the sleep problem does sound similar to Obstructive Sleep Apnoea (OSA). I have Brugada syndrome, which caused sudden passing-out episodes , erratic heart beat, with bradycardia, and also OSA, and they are not a good combination. A simple sleep test will determine whether you have OSA. Sorry can't be of more assistance, hope things improve for you

[helpplease20 in reply to Bulver]

Hi, thank you so much for your reply. Ah that's interesting about Brugada syndrome, as a temperature can trigger mine. However with me also having seizures when scared (rarely admittedly) I'm leaning more towards Long QT Syndrome. I'm 20 and have had them for 17 years so I've had 30 seizures, maybe more.

I don't see my cardiologist until the 23rd but I'm a wreck since learning about these syndromes, LQTS just sounds too similar to my situation. However my ECGs have never indicated this, as far as I'm aware, so hopefully that makes me a low risk for SCA? But then again I'm really not sure..

Thanks x

[Mazza23]

I was admitted to hospital with pulmonary odeama and heart failure 18 months ago I was given amiodarone to settle my heart rate then I was cardio verted it was then found I had lqts and allergic to all drugs on the

Lqts list you can find this on a site called credible meds there are a lot of them including cold flu tabs anti inflammatory so you have to be very careful also avoid sudden loud noises

[helpplease20 in reply to Mazza23]

Hi, I saw my cardiologist yesterday and she said I didn't have it because I've had so many ECGs and it's never been picked up. Thank you anyway

[Mazza23 in reply to helpplease20]

Mine has never shown up on ECG since my first episode because unless it is actually happening at the time ECG (I have had a lot too )won't pick it up so the first time it was caught I was in hospital hooked up to the monitors

[Kizzie54 in reply to helpplease20]

Not sure if my reply was sent but basically my resting ECGs were normal but Chloes were reported as "at the upper limit of normal". My exercise test and 24 hour tape were abnormal. I too was told I did not have Long Qt but it turned out that in fact I did have an arryhthmia just notLong QT- I now have an ICD as does my mum and my son. I don't reply to you to frighten you nor disrepect the docs but ironically I have worked in cardiology for 17 years. Resources are limited due to funds in the UKbut you are symptomatic so should be investigated further. At the very least have an exercise test. Take care x

[helpplease20 in reply to Kizzie54]

Thank you so much. I've recently had a 28 day tape and the results were normal. Do you think this rules out LQTS a bit more? I actually have a doctors appointment in a few minutes to get a referral to a heart centre. SADS UK got the info for me, I just hope my GP refers Me I'm so scared I don't even want to be on my own in the house anymore x x

[Kizzie54 in reply to helpplease20]

Try not to worry too much - I really don't want to cause you any further anxiety - The SADs group is excellent- they will advise you and offer support - they have trained counsellers. Dr Sanjay Gupta is the Consultant who is closely involved with SADs. You have nothing to lose by seeking their advice even without any sort of referral they will help you to look at the options available to you. quite often these arryhthmias can be difficult to indentify and genetic testing can become involved but what you need to clarify is any relevant family history. Do you have any relatives with similar symptoms or a history of sudden cardiac death- Long QT is only possibility - there are many others - The SADs site does discuss other sorts- try to avoid believing everything you read but ensure you are fully investigated, cardiac and if necessary another neurological opinion . Leeds Hospital have quite an extensive cardiac unit. At the end of the day you know your own body better than anyone and you have every right to pursue this further. Stay positive - try to avoid the situations that may exacerbate your symptoms but live life to within your safe capabilities. If you need more help just message me- also keep a diary of when you are sumptomatic... Take care xx

[helpplease20 in reply to Kizzie54]

Hi again. In regards to family history, my dad has passed out very rarely, as have my aunts, one aunt used to have seizures but grew out of them. My dad is now 47 and my aunts early 50s - they're all fine. Do you think I have long qt? I've had over 30 seizures and probably over 30 resting ecgs, and around four holter monitors over the years and nothing has been found. Also. I was in hospital and my heart rate suddenly went to 177, would this be the equivalent to a stress ECG test? As a stress ECG is to make my heart rate? I basically mean, wouldn't long qt have shown when my heart was going like that? If that makes sense. Thank you x x x

[Kizzie54]

I had the exact symptoms as you. I was treated for many years for epilepsy and tragically after a SCA in myself and sudden cardiac death of my daughter age 21- I was tested for a condition called CPVT and was found to be positive- I had had every test you could think off but until my daughter died it was never taken seriously. Don't give in, don't accept everything you are told - push for further investigation- Sorry, I don't want to worry you more but pursue things further. Kind regards x

[helpplease20 in reply to Kizzie54]

Hi. God I'm so sorry. Was your resting ECG normal? Did your daughter suffer from blackouts/seizures? Again I'm so sorry and thank you for replying x

[Kizzie54 in reply to helpplease20]

Please don't be sorry- my resting ECGs were normal but my 24 hour tape and exercise test were not - Chloe had so called seizures during anxiety, stress, pain and sports, but again this was diagnosed as epilepsy. She did had a resting ECG which was reported as " at the upper limit of normal". I too had exactly the same over the years- I now have an ICD, as well as my mum and my son-.

I replied to you with honesty , not to frighten you. My ICD has gone off and correlates to arrhythmia ( abnormal heart rhythm) then VF. No disrespect to the consultants but don't just accept what you are told push for further tests- iIronically I work in a cardiology department and have for 17 years - if I can be of further help please dong hesitate to ask me- Take Care.

[Kizzie54]

It's difficult to be sure if you have Lobg Qt, If you don't then there certainiy appears to be something abnormal in your family - Has your dad had any tests? I have numerous family members with symptoms, some of which have been identified with abnormal heart rhythms, 2 who haave cardiac defibrillators fitted and sadly 2 other sudden cardiac deaths- it could be worth having some genetic testing - The difficulty with that is identifying a common gene within your family- I do wonder what sort of cardiologist you have seen- Have you seen an Electrophysiologist? - Broadly speaking and to simplify- ( an electrician)? they specialise in cardiac disturbunces, as opposed to an interventionalist who primarily looks at the arteries of the heart. ( a plumbet) . The Electrophyssiologist can perform investigations that stimulate your heart to induce abnormal rhythms. These are performed in a cardiac lab setting with all the relevant staff to deal with any sudden cardiac complications- these are known as EP studies./ VT studies, which can identify various rhythm disturbances- eg AVNRT, Wolff Parkinson White, possibly Beugada Syndrome, etc. You have a strong family history, which is exactly the same as our family- They too have repeatedly been diagnosed with epilepsy until Chloe died. I had numerous tests which didn't identify anything , but 10 years prior to Chloes death I had a sudden cardiac arrest, I had had a particularly stressful day and was very anxious. (A common trigger) and often during my period these collapses would occur. Luckily I was at work in a hospital setting which enabled me to have immediate defibrillation treatment, Again this was attributed to epilepsy. I had numerous investigations which were inconclusive- Sadly. It took Chloes death before things were fully investigated. She had collapsed numerous times playing sport, swimming, when she hurt herself. I was tested for Long QT etc. until finally the very first diagnosis that was mentioned to me transpired to be positive at genetic testing and was CPVT- Genetic testing is very expensive to NHS resources but as you are symptomatic with a family history this may be an avenue to be considered.. Don't give in, Provide them the whole family history and still pursue further testing- Resting ECG's, ambulatory ECG rhythm monitoring and such like only pick up the abnormal rhythm if it is present at that specific time, which isn't always the case- Another option could be to have a Reveal device implanted- This again is done in a cardiac lab setting. The device monitors your hearty constantly. Also If you feel symptomatic you can activate the device yourself. The device is downloaded and can show so many seconds before the symptoms and during. This is not a cardiac defibrillator. They can remain implanted for up to 18 months to 2 years before the battery life depletes. Have you been tried on any medications such as Flecainide, Bisoprlol or similar? - These can stabilise the rhythm of your heart. Don't be deterred from requesting and discussing these options. No you haven't looked at the Internet and thrown every thing at the specialists ( LOL)!!!! . It's your right to discuss treatment options- I sm by no means a doctor but believe my work and my experiences give me a pretty broad understanding of such conditions. Don't be dismissed, remain well informed,

research Consultants within your area and their areas of interest Remember I will try to help you wherever possible. In the meantime enjoy life but be safe, - Tell people about your health problems, so that they can seek help in an emergency and consider having a Medic alert bracelet. Take Care x

[helpplease20 in reply to Kizzie54]

Can I ask what tests your daughter Chloe had? Also did you have a holter monitor on for a few weeks? And did it show anything? I'm wanting to buy a defibrillator but they're so expensive x x

[Kizzie54 in reply to helpplease20]

Chloe was never tested further after I had a cardiac arrest because her ECG was deemed normal. I queried this so called "upper limit of normal" on her ECG but it was seen as nothing of concern and as I hadn't shown any serious abnormality it was again assumed to be epilepsy. I had a jHolter monitor on for 3 days which although did not show anything particularly significant to the specialist. It did show bigemany and lots of ventricular ectopics. However, my exercise test was abnormal. After Chloe died my parents were tested and my mums Holter monitor was grossly abnormal showing bidirectional block despite medications. She was tested genetically which was positive and had an ICD fitted immediately. Portable defibrillators are great in the right setting but they require someone to use the device on you. I personally prefer the ICD implanted ( if necessary).The onus should not be upon you to purchase an AED but to be investigated fully because you have symptoms that have not been fully investigated- I must go to work now but never give up. Catch you later and take care.xx

[helpplease20 in reply to Kizzie54]

Hi again. I'm so sorry. Did chloe ever wear a holter monitor? My anxiety is through the roof but I've had them 17 years so I'm just going to have to calm down as worrying won't do anything. Yeah id love an ICD but I think my cardiologist thinks I'm crackers - still annoyed they refused me a stress test. I'm waiting for my 28 day monitor results x x

[Kizzie54 in reply to helpplease20]

Right lets be sensible.- stop worrying too much, as that's of no benefit whatsoever- I am very concerned that I am adding to your anxiety- my intention is just to give you some guidance. Chloe never had a 24 hour tape - they dismissed her symptoms as epilepsy. Nothing was thoroughly investigated til after she died. I personally would write down the options you would like to consider and push for further invesrigations. I cannot believe they dismiss your concerns when you are symptomatic- you need to be very clear that you are not happy and remain concerned that they are missing something- I just need to pop to Tesco- lol - so will catch up later xxx

[helpplease20 in reply to Kizzie54]

Wow, I can't believe Chloe didn't have a 24 hour tape, that's crazy!! I think I was given my first tape when I was maybe 14/15, I've had a few since then. I can't wait to know the results of the 28 day tape. I know it sounds crazy but I take great comfort from knowing there's an AED at the Asda literally 1 minute away from me (just up the road) is that crazy?! For now I'm making sure I'm always with somebody, just until I'm seen by a cardiologist to stay on the safe side x x x

[Kizzie54 in reply to helpplease20]

I honestly think the best piece of advise I could give you is to see a cardiologist that specialise s in rhythm disturbances I.e, Electriphysiologist xx b safe but don't let this take over your life. Just tell people you have this problem and what they need to do in an emergency xx

[helpplease20 in reply to Kizzie54]

Well For the past 17 years I just have seizures blackouts for 10 seconds then wake up, so they no longer class it as an emergency x x x

[Kizzie54 in reply to helpplease20]

But people don't lose consciousness for no reason at all ! Your brain doesn't just malfunction cos it feels like not does your heart ! If you have been having these episodes for so long then there has to be a duty of care to you to investugate this further. I would be so cross if they thought it was acceptable to expect you to live like this- the comment I made to one of our doctors was "would you allow this to happen to your child or you "? No they wouldn't- you are s young adult and are entitled to a good quality of life, basic human rights!!

[Kizzie54 in reply to Kizzie54]

Also take a look at the CRY website - Dr Gupta is actually involved with the cardiac screening program. There is lots of info on there xxx

[helpplease20 in reply to Kizzie54]

Thank you. I'm actually booked to get a cardiac risk screening on August 6th. Do you know what tests they'll carry out? It's at my local football stadium. It's free due to it being run by a foundation x x x

[Kizzie54 in reply to Kizzie54]

I am not entirely certain but I think they do a resting ECG and an echocardiogram. They will def b able to advise you further. Ask lots of questions and keep me informed xxxx

[helpplease20 in reply to Kizzie54]

They write to my doctor first I think, then confirm I have the app so because I've already had an echo and ECG I don't think they'll let me have the screening? I'm not so sure x x x

[Kizzie54 in reply to helpplease20]

I think they will take your concerns more seriously particularly as you don't really have an accurate diagnosis. Your symptoms are so similar to those we have experienced I feel sure something is being missed - even if u just go to speak to them - still go ... Take care and be safe xxx try to relax and enjoy the weekend xx its late but I am going to have a nice glass of wine ! Keep smiling xx

[helpplease20 in reply to Kizzie54]

I just don't see how they could miss something like LQTS when I've had multiple event monitors and resting ECGs, but a doctor has never mentioned these conditions to me ever - I was the one that brought the conditions up to them - so strange and so many questions. Thank you, you too! X x

[Kizzie54 in reply to helpplease20]

Have you considered having a private referral to an EP specialist? The consultation alone is around £150 . It might be worth it to speak to someone who will listen because you are paying them to. You would need a referral letter, Your GPcan do this for you. You would also need as much info as possible about the investigations you have had done so far. Your NHS notes can be requested for the consultation or your GP can supply results letter. Have a think about it xx

[helpplease20 in reply to Kizzie54]

I actually went to my doctor the other day and got a new referral to see a new cardiologist who is also an electrophysiologist SADS UK got me the the name of the doctor and liased with him first to see if he would see me, he agreed so now I'm just waiting for my letter to come through it may be a few months though. X x x

[Kizzie54 in reply to helpplease20]

That's brilliant - do you know who you will b seeing and where ? X

[helpplease20 in reply to Kizzie54]

Clifford Garratt

Professor of Cardiology

Manchester Heart Centre. My GP said it might be a few months yet. The cardiologist I'm seeing is also a heart rhythm specialist and an EP x x

[helpplease20 in reply to Kizzie54]

I'd love nothing more than to go private but I'm a student and just don't have the money x x

[Kizzie54 in reply to helpplease20]

Ok - this is another possible option for you .. Ask for a Choose and Book referral to a cardiologist ? Your local GP should b able to offer you a Choose and Book apt.. It's part of Patients Choice - check

If this available to you- U can b offered a choice of hospitals to visit xx

[Mazza23]

I was rused to hospital jan 2014 unable to breath heart racing they gave me amiodarone to slow my heart catheter to drain fluid ect then all weird things started to happen everyone went into a panick found out after I was predisposed to lqts and the amiodarone woke it up so now have to be very careful what I take you sound like the symptoms they described to me I must have had it all my life iam 72 and did not know very scary

[Kizzie54]

Hi, I was just reading through some old posts and wondered how you got on with your concerns ? How did things progress? Regards X