Newbie - relieved to find STARS

[Miriam82]

Hi,

I'm so glad to find this website. I have fit-like symptoms just before I'm unwell (yet don't know I'm unwell yet, so have no warning signs) and when I have any medical procedure. I'm 31 and it started about 6 years ago.

I realise that others have far greater challenges than me but the more it happens, the more scared I'm getting. I live on my own which probably doesn't help. My GP has told me that I have vasovagal syncope (I was also referred to a neurologist) but offered no other solution. There was also nothing formal about the diagnosis; should I expect this? I don't get ill very often but I've already stopped driving and now kind of fear taking a bath and going swimming. Is this just what we should do? I do have low blood pressure so wondered if trying medication for that might help. I've also been trying to see if there's any link with the contraceptive pill as the reaction to medical procedures began shortly after I started on mycrogynon.

It's great to have come across this group anyhow; nice not to feel alone.

Thanks

PS sorry for the random photo -attached in error and can't work out how to remove!

[AmandaJane23]

Hi Miriam82,

I also have Vasovagal Syncope, it's best to go and see your GP and ask that you could see a Cardiologist not a Neurologist for a formal diagnosis because it's a heart condition ( Vasovagal Syncope is rare and I've not heard of a GP Diagnosing this) I've had a lot of tests done Eco gram, ECG,tilt table test and many many more and I am on mediation for very low BP I also have another heart condition too and I am on a open appointment to see my Cardiologist.

I know some people with Vasovagal Syncope who need a pacemaker fitted.

I've also been told what helps with low BP is have more salt and water drink 3L a day and cut down on tea and coffee.

As for Flu like symptoms there's no link to Vasovagal Syncope or a Pre- Syncope episode coming on, so it may be something else also.

I've had to stop driving because of blacking out, and as for having a bath I was told to get up slowly the same goes when getting out of bed and getting off a chair. As for going swimming I'll go with a friend.

I am on the pill too, the same one you are on and I've had no problem with taking it.

I think you'll find stars.org.uk very helpful they do a lot of info leaflets

Best Wishes

Amanda

[Miriam82]

Hi Amanda,

Thanks so much for your response; it's a great help.

I have an appointment on the 3rd and have the checklist to hand. As you say, I will ask for a referral. I'm also kind of relieved to know that you can just adjust your life like you say - go swimming with someone and things like that.

Many thanks,

Miriam

[Diazimuls in reply to Miriam82]

Hi Miriam,

I'm new here as my son who is 13, has just been diagnosed with cardio-neurogenic v v syncope.

I had kept a diary of symptoms and noticed what triggered these episodes.

One big trigger is illness, esp viral illness eg common cold, sore throat etc.

The issue I think is linked to his temperature. If it's raised even slightly, his blood vessels dilate, blood pressure goes down and bang... He passes out.

I used to give him paracetamol and send him to school but became so fed up of school phoning me a hour or so after he was in school to say he's unwell and passed out again.

I began to notice he would look pale and feel out of sorts. He would just say "mum I don't feel well.... I don't know why I just don't feel right".

I listened to this and kept him from school and it prevented him collapsing.

I would be criticised by his father (my ex husband) and my dad and my partner!

Hey said I was 'pandering to him' and 'babying him'.

I stood my ground despite this and as well as caring for him, ( making sure he ate little and often, drinking water, giving him vitamins and sleep) I started to notice a pattern of symptoms, and triggers, the time of year, frequency and the diary built a picture. It confirmed what I knew from my 'gut feeling' that he wasn't right and something was going on.

There is a link I hav found from researching this condition between viral illness/illness in general and v v syncope. Only you can find the pattern and tell your Dr what triggers your particular symptoms and by doing so, gain some degree of control over this condition.

Good luck

Di x x x x

[Miriam82 in reply to Diazimuls]

Hi Di,

Thanks so much for taking the time to reply. I was very interested to read about your son, as well as very sympathetic. I only pass out with sickness-type illness, which I get less regularly. However, I'm in a similar boat to you and your son because it's not always easy to tell if I'm actually ill or not. I get quite paranoid about it. I used to stay at home if I felt at all unwell. However, it got to a point when I realised (like many other on here - which far greater challenges than mine) that I don't want to limit myself and not live/enjoy my life to the full. So it's about finding a balance between being sensible and trying to still enjoy life. I hope you and your son find ways to cope which are realistic but leave you with some quality of life.

Miriam xxx