Vasovagal syncope

• by NoonB
• 2013-12-04 10:12:47
• General Posting
• 1648 views
• 4 comments

Hi all

I have posted on this site before but wanted to share where I am now and ask some questions. Apologies in advance as this is a long post!!

Background

I will try and explain it as best I can and I think the easiest way for me to do this is to bullet point information in order to give you the background.

• I have had this for numerous years (at least 30).

• I was initially diagnosed as Epileptic and put on Carbamazepine for approx 6 years (which didn’t help me). I then went back to see my doctor who referred me to a neurologist at the Chesterfield Royal Hospital. He said I hadn’t got epilepsy, so I came of the tablets in Feb 2000.

• There are two main areas where I think I am going to black out/panic/get anxious and more often than not black out - travelling (coach, car, plane, train) and eating out, eg restaurant, in a group.

• I try to avoid these situations so the last time I blacked out (apart from the tilt table test) was on a train ride to Nottingham (July 2001). I have blacked out on other train journeys - Eastbourne, Manchester twice, on a coach journey, on a car journey, whilst I had flu and at restaurants. Short journeys are okay, eg, I get the bus to and from work each day which takes 10 minutes. The longer the journey the worse it is. A train ride to Sheffield/Meadowhall (from Chesterfield) would make me anxious. I can travel to Matlock/Bakewell/Chatsworth from Chesterfield on the bus/car and have some anxiety but not much - it is manageable.

• What happens? I get anxious leading up to the event (travelling, going out to a restaurant). While I am in the situation I am anxious, I ask myself if I am OK or if I am going to black out (lots of negative thoughts). Then, it may escalate and I may feel hot, sweaty, tightening of my chest, worried, dry mouth, breathing is ‘not right’. I can only describe it as climbing a stair case. On the bottom step I am anxious, then the next step the anxiety gets worse and other symptoms described above happen, then I may get pins and needles, sweat a lot and then pass out (it all happens very quick and seems to get quicker). I come round after a minute (dripping with sweat) or so and then as soon as I am vertical I start being sick, every 20 mins until it eventually stops and feel tired afterwards.

• When I do have to travel, or go out for a meal with a group the only thing that seems to work is diazepam (2 to 5mg). This calms me down and in the main stops me getting off the bottom step. I still get very anxious leading up to the situation.

• I had been under a Clinical Psychologist at the hospital in Chesterfield. He had not come across a ‘phobia’ (apart from the blood and needles phobia) where you black out. However I was then discharged due to the recent diagnosis of Vasovagal Syncope (see below).

• I do seem to better if on my own and have never passed out whilst travelling on my own. People around me/with me add to my anxiety/panic (not sure why). If I am with my partner, or a 121 with a close friend (in going out for a meal), where I am comfortable it is a lot better. I would choose an open, big, roomy, cool and not crowded restaurant. In a restaurant the hot food makes me hot and adds to the anxiety. I would choose a car as a method of travel - just me and the driver with the window open.

• It is stopping me socialising as much as I would like to and more importantly stopping me travelling both in work situations (which is proving difficult) and in my personal life. Of course I want to be able to do ‘normal’ activities again but appreciate I have Vasovagal Syncope.



Developments

I made an appointment, via my doctor, to see Dr Hadjivassilliou at the Chesterfield Royal Hospital who referred me for a tilt table test at the Sheffield Hallamshire on 12/09/2002.

Tilt table test on 12/09/2002 - during the test I felt fine during the 20 minutes relaxation – horizontal. When vertical I was okay for the first 20 minutes – then it came on suddenly, “not feeling good”, “going to have one” (took about 15 seconds). I felt my heart beating fast, not aware of any other feelings. I blacked out and was told that I had stopped breathing for 23 seconds. I started breathing again on my own. I was extremely sweaty, hot, and had an oxygen mask on. I was then sick about every 20 minutes until I had an injection to stop me being sick. The hospital monitored my BP, I had blood test (all okay apart from one where they had to do another test – ‘high enzyme’), had numerous ECG’s.

One doctor said that my body was doing a ‘reflex reaction’?? I stopped in hospital overnight and was under observation and had a couple more ECG’s ??

A consultant (cannot remember her name) explained to me that I may have to have a dual pacemaker fitted to stop me blacking out and one that only kicked in when it needed to. Obviously I didn’t realise that when I do blackout that I stop breathing having never being monitored when they happen and she said that my heart may not ‘kickstart’ itself. I do remember once – passing out when my daughter was born and I must have stopped breathing. They called for the crash team but by the time it arrived I must have started breathing again. The consultant said I would hear very quickly to arrange to see a Cardiologist. At this stage I still didn’t know what it was and what was causing it. I then got a letter from the Chesterfield Hospital (Mr Hadjivassilliou) saying that it had confirmed their thoughts that I had Vasovagal Synchope and they would refer me to Sheffield Northern General where I had the pacemaker fitted.

And Now

Since the pacemaker was fitted I have not blacked out BUT it should be noted that I do not travel far and when I do I take the diazepam. For the last five years I made a short trip to Sheffield (approx. 10 miles) each morning to get to work. I still get anxious at the thought of travel and eating out in restaurant, etc. But for the last few years felt in control of it and could carry on normal activities.

In the last few months I have taken a backward step and the anxiety became bad and I could not travel into work. I think it started when I suffered from a stomach complaint and felt very ill. Eventually I felt so bad I went to the doctors and I was put on fluoxetine for the anxiety which I have been on for 10 weeks and apart from it affecting my sleep, the anxiety symptoms have gone. I am not back in the Sheffield office yet (I am working from home) and have recently started counselling sessions (CBT) with Steps2Change. My counsellor is unsure how to treat me because of me having Vasovagal Syncope. She has found out more about it and I referred her to your website. She asked me the question ‘As you have a pacemaker will this stop you blacking out?’ I replied that the consultant at the time said that the purpose of the pacemaker was to get my heart beating again after I blacked out so was unsure whether it would prevent me from blacking out. She asked me to try and find out so she could determine the course of treatment.

So, my question is does having a pacemaker stop me blacking out? Logic says if my heart rate drops the pacemaker will kick in and stop me blacking out. Is it as simple as that? If you don’t know the answer should I go back to my doctor and ask to see a consultant for some advice?? Some of me thinks if someone could tell me that the pacemaker prevents me from blacking out (and I have not done so for around 10 years) then this would go some way to me getting anxious in situations where I have previously blacked out. I could then treat the anxiety. If someone can’t say for definite I may have to learn to work around Vasovagal Synchope with coping strategies.

I would very much appreciate any help and advice you can give me and if you need any additional information please ask.