mental health and vvs

[nickitate82]

hi guys does any 1 have mental health like dissacoiative disorder as well as vvs? my son has vvs but has also been diagnosed with anxiety and dissaciotive disorder hes only 11 its ruining our lives poor boy 😭

[Lynneporterjack]

Hiya. Yes, my 15 year old has vvs, but also dissociation. He has had a painful growth disorder since the age of 8, and after changing medication, started having multiple "blackouts" daily, which continued when all medication was stopped. This has continued for the last 2 years plus. He has had a tilt table test, which diagnosed vvs, but they also indicated that there was a functional element too. I found I could spot the differences, he gets a warning of vvs attacks, but dissociation can be instant. He also takes longer to recover from vvs. Anyway I can help, please ask. I found the entire process daunting and confusing, not helped by professionals not being aware that dissociation is something that they have no control over, and isn't faking for attention, but rather a physical response to situations. The way I understand it, he goes into overload, and his brain copes by shutting down, sort of reset button pushed by the brain. Once you get CAMHS behind you, it's not instant, but you should be able to have access to therapy, and possibly cbt and emdr. I would also recommend finding out if you have a CAMHS youth club nearby, as from my experience, the more you can keep things ticking over normally, school, friends socialization etc, the better, as with our situation, he was classed as a health and safety risk, so wasn't able to go to school, which lead to isolation issues and an increase in depression, spiraling downwards with increase in dissociation. I hope you are also okay, as it is stressful for you too. Xx

[nickitate82 in reply to Lynneporterjack]

thankyou we are struggling school want him in school but then moan when he goes unresponsive 😢 cant win its so hard x

[Lynneporterjack in reply to nickitate82]

It's horrible, I understand, especially when the school moans. I ended up having multiple meetings with the school, trying to explain the situation in various ways, and the only thing I found that helped, was giving them some printouts from websites, which I think I suggested to you before, and also explaining that it is a medical condition, in simplified terms, like epilepsy, which they can't control, except that he doesn't have the dodgy brain waves causing it. A vasovagal syncope diagnosis is good though, as it is a documented condition, so it's easier for them to understand and research it themselves, if they have any inclination to do so!! I pushed for a diagnosis of the dissociation, as the education authority really didn't get it until a consultant put a name to it. CAMHS don't like labels, so only say dissociation, but education authority need a diagnosis to be able to act accordingly. It has various names, non epileptic attack disorder, pseudo non epileptic seizures, or functional neurological disorders, all basically the same thing. I'd recommend stressing the vasovagal syncope diagnosis, even though it's not the whole picture, until CAMHS put a label on it. Best of luck xx

[nickitate82 in reply to Lynneporterjack]

cahms have put a name to it but school still causing problems cant win just been to docs as since his seizure monday nite hes had a bad head ache tht makes him dizzy and she said she cant find anything wrong and that hes a complicated case like that helps x

[Lynneporterjack]

No help at all then! Hopefully, the doctor checked his blood pressure, which I assume was in normal range, which is why they couldn't do anything. At least you had him checked out, to rule out anything else causing issues, so that's good. Have they checked his blood? My son was found to have low vitamin D, which can add to low mood for him, so I gave him vitamin supplements whilst CAMHS were doing their thing. It's cheap, and won't cause issues if his levels are okay, as the body just gets rid of excess. It helped my son to take a pill, even if its a vitamin supplements, as I told him that it could help. This helped his mood a little, as something was being done, even though it wasn't anything more useful. Worth a try maybe? Xx

[nickitate82 in reply to Lynneporterjack]

ye he was low in vit d i give him multi vitamins to help. well tday he has gone bk to school till 10:45 no fonecall yet so fingers crossed x

[nickitate82 in reply to Lynneporterjack]

and no didnt check blood pressure just put tht thing on his finger and looked in his eyes and took his temp x

[Lynneporterjack]

It may be worth getting his blood pressure checked, and ask for a blood test too. Medication that my son was on, increased his blood pressure, which caused more vvs attacks initially. Vvs calmed down when medication stopped, but was then replaced by dissociation blackouts. This was due, in our case, as he didn't have any pain relief, so his constant chronic pain got worse. Keep strong, chocolate helps me! Xx