Newbie looking for advice...

[Sarahlou1992]

Hi All, I stumbled across this site after searching the internet tirelessly for some answers, apologies in advance for the long boring post.

I am a 26 year old female who suffers from faints/blackouts/seizures. I have always been a frequent fainter from being young however when I was 21 I began to feel unwell at home. Presuming I was going to faint I sat down with my head between my knees. I then thought I was going to be sick so my mother in law who was with me at the time went to get a bowl. By the time she came back in the room I appeared to be having a seizure (unconscious, stiff and jerking movements) so she called 999. It took me a few minutes to come around, at which point I desperately needed the toilet. I was also very confused and tired. The ambulance arrived eventually, did an ECG and checked my blood pressure - both normal, but took me to A&E to be safe. All tests were inconclusive and I was quickly discharged. Fast forward to last August: I was at the theatre with my mother in law watching a show. 10 mins from the end I began to feel unwell, the next thing I know everyone is fussing around me, I didn't know where I was or what had happened. I had had another seizure, this time I had also vomited and wet myself. My mother in law took me straight home and I went to bed feeling exhausted. In the 3 months that followed I continued to have 'episodes' a couple of times a week but less severe. I would feel sick, dizzy, have hot flushes and shake uncontrollably. I saw my GP who ran various tests - all normal before referring me to neurology. The neurologist told me it was probably syncope and not to worry but he would send me to cardiology to be sure. I have been under cardiology for approx. 9 months now and have had various ECG, ultrasounds etc all normal. The cardiologist has now booked me to have an ILR fitted as a last resort but I am terrified. I was wondering if anyone has experienced anything similar to me and if you actually have a diagnosis?

[Charleneadmin]

Good afternoon Sarah,

Thank you for your post, I do hope I am able to help.

I am sorry to hear about your fainting, blackouts, and horrible symptoms that you have been living with, this is understandably very worrying for you.

It is fantastic news that your cardiologist has booked you in to have an ILR fitted, as this will lead to a definitive diagnosis. I know it is all very worrying, but please try not to worry.

You might consider reading some of our resources on our website, which you can find here: heartrhythmalliance.org/sta...

Please do contact us if you need any help at all, by calling 01789 867 502, or emailing [e-mail]

Best Wishes,

Charlene

Support Assistant, Patient Services

[drumsnotdead]

I'm 25 now and my doctor doesn't want to do any further investigations now he's read my notes from childhood about my RAS diagnosis and has suggested I learn meditation. I feel a bit frustrated so I get what you mean. I don't want to tell my job I have RAS because everything online talks about it pertaining only to children, but when my GP won't move forward on this in any way I'm not sure what else to do. I have never learned to drive and I was hoping to do so soon if I move further out of the city, but I'm scared I won't be able to. I know this doesn't help you, I just wanted you to know you're not alone!

[Giulia26]

Hey Sarah,

Just saw your post. i have had a similar experience and am currently going through the process to get answers through several medical tests. It's such a stressful process and wondered if you had any answers to yours at all? I'm still waiting for a diagnosis

[Sarahlou1992 in reply to Giulia26]

Hi Giulia,

Sorry I don't have any better news but I'm afraid I never got any answers. I was fitted with an ILR for just over 12 months but nothing was ever found and I have since had it removed and been discharged from the hospital. However, I had a baby 6 months ago and found that since then my symptoms have stopped. Sorry I couldn't be more help, I hope you get some answers soon!

[Herewegoagain2]

Hi,I’ve had intermittent fainting/blackouts for the last 8/9 years. First time was a big shock as I had no memory for 3 days, MRI, lumbar puncture didn’t come up with a diagnosis, then 5 years later another one which was a mild one so epilepsy was mooted and I lost my driving license for a year and I thought all was ok, then 4 years later, this year I had another where I landed up on the floor after falling/rolling off the sofa 3 feet away. I desperately needed the loo too and I was on my own until my husband came home. I eventually went to hospital and had usual tests again, I do have tachycardia : SVT. Been to St. Barts but all came back ok, but a few months ago had sleep deprivation test to see if it was epilepsy but it was negative however, I haven t been able to drive again since April this year. Now a week ago I was fitted with an ICM .. Insertable/implantable cardiac monitor. That was a shock. I didn’t realise it would be a big thing, I thought It would be like the dentists chair, full blown op theatre. I passed out again whilst the Cannula was inserted as the nurse couldn’t do it properly and since have nerve pain in my arm. My blood pressure dropped immediately so I was put on a drip. The op only took about 15 mins under local, about the size of 3 matchsticks and the scar is about 1/2 inch long but In an inconvenient place, and sometimes it feels like indigestion, but I am assured it will get better. I had to go back to A & E this week for another ECG check which was ok but I think the increase in palpitations is mostly anxiety. Having a monitor all the time and being connected to the hospital through the device seems to be life changing. I don't want to become paranoid because of this always recording my symptoms. I am 66 years old and would expect things to go wrong at my age so I can imagine how frightening it can be for you as a young person. Your symptoms sound so similar to mine . I would say try not to overthink it and worry, ask as many questions as you can. When time goes by I think I am ok and when it happens again that’s when it upsets me, I can’t believe it happened again. That’s when you know things aren’t right, so all the tests and care you are getting are the best thing you can get to put your mind at rest. All the best xx