Vasovagal syncope-psychological

[Evaenels]

Hello! My daughter of 15 is diagnosed with vasovagal syncope since march this year. She fainted almost twice a day, mainly at school or after football training. I took her of from school and she was allowed to do her exams at home. Than she started fainting nearly every day. She had all the necesary examinations, the tilt-test was negative. It seems something psychological. Two years ago she was bullied school. Now everything is coming out. She also hurts herselve. Every time she feels stress or anxiety, she faints. She had 3 emdr therapy sessions and is followed by a psychiatrist. It is very stressful. I hope this will end soon! Does anyone has the same experiences?

[Lynneporterjack]

Hi. Yes, my son who is nearly 16, has had a chronic pain condition since the age of 8. Two years ago, he started having "blackouts", which at first was thought to be a reaction to his pain meds, but the episodes increased after all meds were stopped. Tested for all sorts of scary illnesses, but was found to have vasovagal syncope, triggered by the medications. Not the whole story though. The episodes continued and worsened, and doctors used the term "functional", which was wrongly explained to me that he had control over the episodes, therefore faking symptoms. I knew he had no control over the episodes, so I did a lot of research, and found a dissociation condition, known by lots of different names, Functional Neurological Disorder, non epileptic seizures, non epileptic attack disorder is a few. His brain has developed a coping mechanism, basically restarts when in too much pain or anxiety. He has no control over them at all, but getting the school, educational authority and "professionals" to recognise it without a formal diagnosis was awful. My diagnosis was finally confirmed by his consultant 9 months ago, which helped enormously. If they have had a major stress in their lives, bullying, pain, abuse, trauma etc, it is a little like PTSD, triggered by the fight or flight reaction in the brain. It needs a EEG, with video telemetry done by a neurologist, who check brain waves during an episode to diagnose it. As it is the brain's response to stress, psychological therapy, CBT, EMDR, are the way to treat it, and has good results. There is also an excellent face book group called younger FND fighters, all going through similar situations, where they can feel less alone. If I can help in any way, please don't hesitate to contact me, however I am not a medical professional, just a mum! Just remember that you are not alone. Big hugs, Lynne. Xxx

[Evaenels in reply to Lynneporterjack]

Thanks Lynne! How is your son doing now. Did he have emdr or cbt already? We are on holiday now and everything is great. I just can not stop thinking about going home and having to face it all back again. Does your son get any specific drug for the vvs? I read about drugs angainst anxiety and i wonder if this isnt necessary together with the therapy. I also feel as if i have to give the answers to the doctors while they are the specialist! I wonder how we can make sure that she has an episode while she is with a neurologist? Thank you, finally i found someone who understands!

[Lynneporterjack in reply to Evaenels]

No problem! It can be terrifying, not only seeing your child go through this, but having to keep everything as normal as possible whilst coping with day to day life, and juggling hospital and CAMHS appointments too. I'd recommend keeping a note of when she has episodes, to try and figure out her triggers. This will show what area's that need to be looked at, and she may need help with. It's really hard, but the best thing to do is to try and not worry too much about the episodes, and keep her as active and sociable as possible, as with Jack, one of his triggers was education, so whenever he was at school, his attacks because worse, he then was classed as a health and safety concern, so was unable to attend. This lead on to more depression and anxiety, lack of social interactions, leading on to a spiral of fear of having an episode when out of the home. Worst case scenario, so I'm not trying to frighten you, just to give you a heads up on what happened to him.

With Vasovagal Syncope, no medications available, but a small increase in salt in the diet and making sure she stays hydrated is the best advice. It is also worth getting her vitamin D level checked, as with Jack, his increased time inside left his levels very low, which added to his depression.

He has had talking therapy, CBT and EMDR, all through CAMHS, but unfortunately he had multiple episodes during the appointments, if I could actually get him out of the house, so it didn't help. He has been on Fluoxitine, an anti depressant, for two years, and is currently an inpatient at hospital. The therapies at CAMHS, have excellent success rates, but are heartbreaking, as it stirs up lots of emotions, and pokes old wounds, which in turn, can make thing's worse initially, but keep strong. We used humour as much as possible, calling them "Jack splats" which helped normalise the situation a little! Easier said than done, I know, but I found it helped him if everything was calm, which took a while! It's scary, not helped by other's panicking and insisting on ambulances etc, but it can also lead on to further anxieties if this happens often enough, especially as A & E just class it either as faking, or a mental health problem, and send us home! I hope you have had better treatment!

I found that CAMHS were reluctant to name the condition, as they dislike labels, however school and educational authority need the diagnosis in writing. Don't worry about if she has an episode during the EEG, they can always repeat the test, and if nothing else, rule out epilepsy. With a list of identified triggers, they may diagnose it without the test. Jack had his 2 months after the attacks started, but it was only when I got a copy, researched the results, and realised that the answer was missed that thing's improved. I hope I am not scaring you, not my intention! Jack had around 300 documented episodes daily, so was an extreme case, thankfully now much improved, however he will not get those 2 years back, so I'm keen to help others not have to go through what we went through. I hope I haven't scared you off! It has excellent recovery rates, but it takes time. Unfortunately, no medications available for the episodes, but if needed, antidepressants can help minimise anxieties, which in turn helps. I am also on "happy pills" to cope, so don't be afraid to speak to your GP for you too. It's a lot to cope with. Hope that has helped! Xxxx

[Evaenels in reply to Lynneporterjack]

Thanks! Just hope thate everything could go back to normal.i stopped working in april to be with eva. I indeed have the reaction of keeping her home safely. I know that that is the wrong thing to do. But every time she has a periode she is really down and starts scrething her arms and legs. She feels useless than. Her selfasr

[Lynneporterjack in reply to Evaenels]

Bless your heart, don't beat yourself up, it's the natural reaction to keep our kids safe, which is what we are here for! I also gave up work to look after him, which in turn made thing's tight financially, so again, make sure that you are looking after yourself. You have to be strong, physically and emotionally, so a FND carers Facebook group may benefit you too. Having a space to vent frustrations, worries, and sometimes have a connection to someone else who understands how hard it can be can help get through the day. My major concern was him hurting himself through a blackout. The hospital advice was to keep him under constant supervision (the same hospital that missed the EEG report!) So for months, I was in his face, wouldn't let him walk up and down stairs alone, (he had to sit on the steps and come down a step at a time) I brought a wheelchair too as he had attacks when I summoned up the mental energy to go out somewhere with him, and he would collapse, triggering others to call ambulances which didn't help. We do what we have to do to keep on keeping on! If it helps, touch wood, he has never broken a bone throughout all the collapses. This however, also made "professionals" more convinced he was faking !!

Something that helped him, was getting some gerbils! Giving him something else to concentrate on, and look after all for himself shifted his thinking away from how crappy his life was, so helped with his depression also, and we often had quick trips out to pet shops for supplies, which he was keen to do, which meant less blackouts whilst out!

We are now at the stage of him yesterday, being accepted by a mainstream senior school, to start in September! He has been held back a year, due to all he has missed, but all good! Finally moving forward, rather than existing day to day. I'm worried that he won't be able to cope, but if he can, great, and if he can't, at least he has tried, and we will move on to plan G !! The new school didn't believe my advice about what to do if he had an episode, so the hospital supplied the same info to them, and they now accept that as long as he doesn't hurt himself on the way down, he will be okay without an ambulance! He also has had episodes lasting 3 hours, involving him falling to the floor, coming in and out of consciousness continuously, twitching etc, so as long as no one tries to move him, he will come out of it eventually. I have vowed to have a tattoo of "it'll be fine" on my bum when he is discharged from hospital, as it's been my catch phrase throughout this! Heh heh! It WILL improve for you and your daughter, but it takes adjustments to daily life. Keep strong, and know you are not alone, I'm here, happy to bore you silly, if nothing else! Xxx

[Hidden]

Lynne and Eva, I've found this thread so informative. My dd has had various health issues over the years and in short she was put on Prozac to help with depression caused by bullying and the health issues. Prozac triggered fainting 4x a day so was replaced by sertraline. Fainting reduced but over the last 4 years (she's now 20) she continued to faint every 4-6 weeks, sometimes more sometimes less. She was diagnosed with vvs/NCS (as well as other autonomic dysfunction) and put on midodrine. This seemed to help with the morning faints (getting out of bed), However ever time she got angry/upset/emotional she would continue to faint, sometimes lasting up to half an hour, eyes shut, frequent jerking motions. Nothing seemed to prevent this (salt, high water intake, meds etc). I fully believed this was different to vvs/NCS but nobody (cardiologists, syncope specialist) seemed to agree with me so we just battled on.

Thankfully, this last 5 months, age 20, my dd has formed some stable friendships, finished college (she missed 2 years age 16-18 ), passed exams, seems happier in herself (and gave up midodrine). She has had 5 months without fainting. I finally feel we are coming out the other side, but it has been a long haul and I'm sure there will be more ups and downs to come.

This thread has made me think that i was right all along and there was more to it than vvs, but hopefully I will not need to push for further diagnosis now. I wish you both the best of luck xx

[Lynneporterjack in reply to Hidden]

Thanks Clare, and I'm really happy that DD is doing well. It IS a long haul, not helped with the lack of knowledge about this condition, even supposed specialists in this field don't automatically know about it! I found it was classed as "mental health", so with a referral to psychological therapy, all medical treatment stopped, with seemingly no communication between both arms of treatment, so I became, and continue to be Mother from Hell! It is heart breaking that our kids have to go through this, and don't automatically get what they need to improve. I hope thing's continue to improve for you, and thank you for sharing. Best of luck to you too. Xxx

[Evaenels in reply to Lynneporterjack]

Hey Lynne and Clare. Nice that your daughter is getting better Clare! Hope Jack will have a good start of the school year! I was having some questions about the diagnose today. When Eva faints she falls straight on her back and only is gone for about 5-10 seconds. When it is from direct stress she doesnt get any warning signals. Sometimes, after the stress, she gets a headache or feels dizzy. She always goes on, instead of lying down, and than falls. She also falls after a stressful moment when she is really tired and does sports or gym at school. This seems different from the episodes Jack has. Thanks for the support! Taught about you a lot!👍

[Lynneporterjack in reply to Evaenels]

Jack's episodes can vary from split second blackouts, for example, if he is walking and has one, his knees go, but he can sometimes regain consciousness before he hits the floor, to save himself, to the worst, which involves him falling to the floor, coming in and out of consciousness for up to 3 hours, and everything in between ! If we are out, and he starts to feel anxious, getting him to wiggle his toes, or hold something often helps briefly, gives his brain something else to concentrate on, which helps. If Eva gets warnings, try it, to see if it helps. The toe wiggle helps, as no one else can see him do it, and the diversion tactic can sometimes help, and it gives him a little control, which also helps. Attacks can vary from person to person. Some have trance like episodes, sort of sleep walking, and others lose control over parts of their body, with no medical explanation, so a wide range of symptoms. I understand why she won't give in to her symptoms and rest, when she feels an attack, but it is her brain's response to certain situations telling her something isn't right, be it anxiety, stress or pain. Jack no longer has the Vasovagal Syncope episodes, which caused headaches and fatigue, and he often needed to sleep after a Vasovagal attack. It was due to the Vasovagal blackouts, that I believe his brain "learned" that whilst unconscious, the pain or stress of certain situations lessened, so it goes into fight, flight or blackout mode to protect itself. Again, I'm only a mum, not a medical professional, so this is just my way of understanding, and may not be 100% accurate. Have a look at the epilepsy website, which also includes non epileptic attack disorder info, also known as Functional Neurological Disorder, pseudo seizures, non epileptic seizures, but it also has different names for it too. Conversation Disorder or dissociation, functional disorder or dissociation disorder too, which doesn't help researching it either! Xxx

[Maz123456 in reply to Evaenels]

Hiya Eva, I was just reading this after googling and your post was like I’ve written it myself about my 15 year old daughter. Exactly what she experiences. I was wondering please if you found anything that helped? This started happening for my daughter after a minor day surgery.