Hidden

Hi Giulia26, I don't really have advice, but just want to say you're not alone. My 21yo daughter has fainted numerous times over last 7-8 years and has had all sorts of tests like you, including for epilepsy. The only diagnosis she has received is neurocardiogenic syncope/vasovagel syncope, because she always has pre-syncope and never faints lying/sitting down. One trigger is definitely anxiety which results in a faint with jerky movements and, on occasion, lack of bladder control. One doctor touched on non epileptic seizures but never diagnosed these. As time has passed my daughter's faints have reduced, so I keep my fingers crossed that eventually they will stop. For her, the management of anxiety is crucial. Good luck with everything!

Giulia26 in reply to Hidden

Dear Clare

Thank you soo much for taking the time to reply, it really is comforting to know other people have had similar experiences.

I’ll keep my fingers crossed for your daughter too.

Giulia x

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Mbun in reply to Hidden

My daughter suffers from ras and huge aniexty issues. It's a struggle daily. We only just been diagnosed with ras but shes had them since birth. Shes always been a clingy baby shes 5 now and still the same but our main aim Is to reduce the aniexty at school at the minute

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UKE-7002

Hi Giulia26, I have an implanted loop recorder following 3 separate blackouts. I’ve had several tests; ECG, MRI (for epilepsy, normal), thyroid, many blood tests, ultrasound heart scan. My GP has prescribed beta-blockers, Ramipril and Sertraline (for anxiety) but the only issue has been potentially linked to high blood pressure and irregular heartbeat. It’s the first time I’ve responded to comments here but I have been feeling quite isolated, which I think has exacerbated the anxiety. I’ve spoken to several paramedics and doctors and at the moment, the best advice they could give me is to lie down as soon as I sense a blackout is oncoming and raise my legs. I’ve got support from my employer and my symptoms usually subside after 20 minutes. It’s not good to know there’s someone else that experiences faints but I believe that there are experiences that we can share and hopefully, the more knowledge that is out there, the better the chance of getting a diagnosis. Good luck!

Giulia26 in reply to UKE-7002

Hi UKE-7002,

Thank you very much for taking the time to respond to my post. Honestly, it makes such as difference. Because just like you, the thought of feeling alone in this makes me really anxious. Just knowing that there's people out there with similar experiences helps me alot. I appreciate the helpful advice, and I also wish you the best of luck with your blackouts.

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DragonsRreal

I faint about once a year, and have convulsions every single time. I have not lost bladder control. I'm sure that would be very frightening. I'm seeing my doctor soon to discuss the fact that I am now fainting while lying down and that scares me a lot. There's no way to prevent it if you're already lying down!

Giulia26 in reply to DragonsRreal

Hey,

Thank you for taking the time to reply. It is scary! And I can imagine your faints are too. I hope you get some answers and reassurance from your doctor soon x

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Lynneporterjack

Hi. I'm so sorry to hear you are going through this. My son has daily "blackouts " and like you, has had lots of tests, all normal. We have recently got a diagnosis of Functional Neurological Disorder, Non Epileptic Attack Disorder. He previously had a psychological diagnosis, dissociation and was regularly accused of faking his symptoms, making the situation a lot worse. FND is a Neurological problem which is a wiring problem in the brain but is very difficult to detect, and also not widely understood by non specialists. As there is no organic problem, nothing much shows up on tests. Have a look at FND Hope UK or Facebook groups and even if it isn't FND, the huge number of people suffering with this little understood condition can at least sympathise with your situation. We have had a lot of support, which makes coping a lot easier. Sending you hugs. Xxx

Giulia26 in reply to Lynneporterjack

Dear Lynneporterjack

Thank you soo much for taking the time to reply to my post. I actually had never looked into FND but now I have, I definitely see a lot of similar symptoms and the support pages are really reassuring. Honestly, I really appreciate all the advice, it really helps to cope and feel a lot less isolated. I wish you and your son the best. Hugs xxx

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Staveley

When I was in my teens I fainted three times but nothing diagnosed. Over the years I used to get the odd dizzy spell but never fainted. However just before my 60th birthday I went down big style.,and had a convulsion. All tests nothing diagnosed. Have had a few dizzy spells this year and gone back for more tests. Definitely lose blood pressure between sitting and standing and dehydration is a common factor as well. So you are not the only one, I thought that for years. Get on with your life as best you can just look for exit points if you go anywhere new, seats or lying down. It plays on the mind I know but try and think of other thinks and reduce the stress level. Don’t let it beat you.

Giulia26 in reply to Staveley

Dear Staveley

Thank you ever soo much for the helpful tips and advice. It truly means a lot and makes me feel a lot more reassured.

I wish you all the best, and will take on those strengthening tips x

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