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- Tue Nov 10, 2009 9:33 pm
Hi I am a 25yr old female. (highlighted any info that may need to go back to)
I have been having fainting attacks since september 07.
I first had a faint at work in sep 07 where paramedics were called and I was took to hospital as I was unconcious for around 15mins and later discharged that day. I then a following 7 faints within 2 months I was given an appointment with a neurologist who did an EEG which came back normal and then referred me to a cardiologist at my local hospital who did an ECG and TILT TABLE TEST which both came back normal.
In March 08 I was admitted into hospital for a week where I had two attacks which were witnessed by nurses on the ward (ECG's were done but were normal)
I also had an MRI which was apparently normal but has since gone missing from my file!
In the following few months whilst waiting further appointments my fainting increased to around 5 a week. Every time I went to the local hospital and got sent home, the reason being that I was already seeing specialists so did not need anything further.
My Partner and Mum took me to my local A and E department in July 08 as on this particular day every time i tried to move I passed out. The doctor I seen in A and E admitted me into hospital where I was monitored and had a second tilt table test where I had tachycardia and an AV Block for 8.4secs. I was wired up to an EEG aswell and that was normal although the doctor said I had rolling of the eyes and twitching of the fingers!
I was put on disopyramide which I tried for 3 months and it was making my condition worse.
After this result I was referred to The national neurology and nuerosurgery hospital in london and was eventually admitted there in February 09 where they carried out a number of autonomic tests. I went on the tilt table 3 times there each time having a faint quite quickly. This included a meal test where I fainted both times.
I was put on fleudrocortisone 5mg x twice daily. (I had no AV Blocks throughout these tests)
The specialists there advised my cardiologist at a different hospital I had vasovagal syncope.
Since then the cardiologists have increased me medicine plus put me onto midodrine at the highest dose and I have been on this for the last 6months with no improvement. And all the time my fainting episodes have got more frequent.
I faint on average around 1 a day sometimes this can be 5 times a day and then I won't have one for 3/4 days but I never go more than a week without a faint.
Alongside this since August 08 I have been having seizure like symptons with my condition i.e; jerking of the limbs, biting of the tongue, incontinence and absenses. These were diagnosed in London hospital as non- epileptic seizures. And they are classing them as seperate to my vasovagal attacks. (i'm not sure if this is correct as I mentioned earlier The doctor witnessed seizure like symptons with my second tilt table test.
As my condition has gone on I also now get very confused, since august 09 I am in a what I would call a drunk state most days. I feel drunk I slur my words and feel very dizzy on and off through out the day most days.
My blood pressure is on average 100/60
and when I have an episode has been recorded as low as 40/20.
I have come to the doctors lounge as today as each time I go to the specialists each of them tell me we will wait to see what the other says and I am so frustrated and upset it is unbelieveable. They just keep telling me to stay on this medication and do the lifestyle things like drink more water get out of bed slowly which I have been doing and which don't work at all as I can have faints whilst sitting also.
I have had to stop working (I am at risk of loosing my job)
I have to be with someone 24hrs a day( after faints I sometimes get confused and have worked out of my apartment in the middle of the night)
I am constantly hurting myself(Have lots of scars on my face from bumps and scrapes)
I now have to use a wheelchair regularly as I faint so often.
As I am now loosing bladder control regularly I have lost alot of confidence.
This condition has completely turned my life upside down. I need to know if there are further tests that need to be carried out or if I can try new medicine other than the 3 mentioned that I have tried above.
I will list below my symptons in brief and please ask questions if you need further information.
FAINTING (sometimes a warning of blackness in front of my eyes and sometimes my sound goes muffled.sometimes I don't remember if there was a warning or not)
DIZZINESS (room starts to spin and I need to lay down asap)
INCONTINENCE (no warning but usually have an absence like attack where I just stop still in whatever I am doing and then wet myself)
Is there any thing else this could be which has not yet been tested?
| John Kenyon, CNA
- Sat Nov 28, 2009 10:35 pm
Hello -- First off, I don't think this is simple vasovagal syncope. It is happening far too often, apparently without any sort of trigger, and there are other, more remarkable features which appear to be getting overlooked. For instance, your lowest measured blood pressure (40/20) is virtually nil. Even if this was a false reading chances are that's because it was too low to support consciousness. EKGs have been done but apparently not studied closely, as I strongly suspect something more would show up. Even the fact there was some sort of block is significant, although these can be acquired and transient. Since your problem continues to get worse I don't think they actually are transient, but may be intermittent. This could be due to a neurological problem, and you could even be having seizures, but whether they are primary or secondary isn't at all clear (anoxic seizures -- due to lack of oxygen to the brain) often occur during very slowed heart rates or long pauses in beating due to blocks. On the other hand, some neurological disorders (certain sorts of dysautonomia such a neurocardiological syncope or disease of the sinus of Valsalva) can also cause this sort of thing. I wish I could see a copy of one of your "normal" EKGs, because there could be a clue hidden in there that's being missed.
I believe several things should be done. First, an event monitor should be carried for at least 30 days, during which these events can be caught and recorded so doctors know exactly what the heart's role is in this. Second, a thorough neurological workup is in order. You describe vertigo, which is not the same as the dizziness of presyncope, but is often symptomatic of some neurological problem.
It's impossible to say with any certainty at a distance, but I really don't think this is simply vasovagal syncope. That's too easy given the extent of your events. The possibility of a neurological basis needs to be ruled out, but so do other things like long QT syndrome (this needs a close look) and transient 3rd degree junctional block as well. Something here just does not add up.
I would aggressively pursue both an event recorder and a neurological consult. Sometimes one pushes the case one way or the other. I realize with the system you have to deal with it can be difficult to get quick and precise attention, but this is exactly what the practice of medicine is for: To make sick people well. I'd be adamant in my demands for an appropriate diagnosis and treatment. What you're having to endure is simply not acceptable, at least not with the overly simplified diagnosis you've been given.
Please follow up with us here as needed and keep us updated also as to your progress or anything new you may learn. Good luck to you with this.
- Mon Nov 30, 2009 7:18 am
Thank you so very much for your reply John and the information you have given me.
I real feel nobody is trying to help. Your the first person who seems concerned by my condition. Each appointment I have lasts around half an hour at the most and I can never express the extent of my condition and how it is stopping me living a normal life although I do tell them.
I want to bring to your attention that I have had an EEG on for about 6 days if I remember correctly and also an ECG for around 3days and I did have episodes whilst they were fitted. If I could get hold of my EEG and ECG results would you be happy to look at them for me if I could scan and email them to you?
I also forgot mention in my original post that with reference to the non epileptic seizures they advised my doctor to refer me for CBT Cognitive behavioral therapy, which I went to with an open mind but when I discussed my symptoms they were not sure as to how this was going to work for me . Also they said you can not control your feelings if you are unconcious and suggested that I should talk to doctors again to discuss this.
I had an outpatient appointment on the 17th of November in London neurology hospital where I seen the nurse from my doctors team who as I sat down I was asked how I am and then again when I said no better I was told about lifestyle changes again.
I then advised them that medication does not seem to be working and my faints are more frequent and I was told that I would need CBT she did not seem to realise that I had already been referred for this 6 months ago. I then advised her of the outcome of my CBT appointment and the nurse said that I would need to see there CBT team and go in as an outpatient. When I asked for them to explain more in detail why I would be having it she advised me that I have vasovagal Syncope but the CBT is for the seizure like symptons which they feel are psychological and although I don't make them happen my brain does in basic words. I was told by the nurse that out of the 4 tilt table tests I had done at London hospital only one was vasovagal and this is why they feel the rest is psychological. She said they know I faint and the nurses on the wards when I have been in hospital have witnessed this aswell as the tilt table test showing I did but lots of my faints are my brain without me trying to make it shutting off!!!
The next day on the 18th I seen the doctor who originally sent me for CBT she had spoke to the nurse before my appointment and was sorry that my CBT did not work out locally but advised me that the next way forward is to have it done there as an inpatient.
I then Questioned my tilt table test results as I was not aware than only one faint was vasovagal she printed my letters for me which shown a report to my doctor with regards to my tests and after reading them it says that out of four, three of them were vasovagal and the other one says neither or. I am so frustrated could this really be a psychological condition or do they seem to be fobbing me off ? I would really like your views onthis.
The doctor I seen on this day said my case is very complex and then said it would be alot simpler if my tests did not show vasovagal syncope as we could then just concentrate on the CBT. But I don't understand why this would be simpler... for them? or me? I am in process of writing a complaint to the hospital I want to know why nobody is looking into this further.
I have an appointment with a new specialist on the 15th of December but I am worried that he will not look into my case himself with an open mind but will be influenced by my most recent letter from the doctor I seen on the 18th which says diagnosis 1. vasovagal syncope 2.non epileptic seizures 3. non vasovagal syncope.
And throughout the letter I feel she is concentrating on the whole psychological thing which is confusing as When I was put on my tablets in Feb they were concentrating on the vasovagal syncope. It seems now they are not working they have only CBT as an answer.
I live for my appointments but they are so disheartening
Please come back to me with your views.
| John Kenyon, CNA
- Sun Dec 06, 2009 11:11 pm
The plot thickens. First, the nurse who told you, verbally, only one of the four tilt table tests revealed a vasovagal response was very likely mistaken, since the written report is dictated by the doctor reviewing the results. Therefore it would seem you had 3 out of 4 tests positive for vasovagal syncope, a pretty convincing number.
The problem here really is complex, but only because it is difficult to sort out a differential diagnosis with 2 or 3 possible explanations competing (and possibly co-existing) in one patient. However, this much is clear: You do have vasovagal faints. This could be the cause of non-epileptic seizures in itself. You also could have psychogenic non-epileptic seizures (in which case CBT would be appropriate). In either case, what needs to be clarified is the mind-body connection and the fact that whether or not your brain initiates these seizures it is involved in their happening once they get started. While your brain may not have a lesion causing this, your brain is involved and psychogenic seizures are not imaginary nor are they caused solely by emotional disorder, because without the body being involved in a mind-body connection there could be no "playing field." For instance, if a person deliberately (or even unknowingly) hyperventilates, he or she may actually wind up fainting or having a seizure. This is something some people (usually the young and bored) try for "kicks." It doesn't matter the resulting faint of seizure is deliberately induced and there is no brain lesion involved; the resulting even is real, and the brain is involved during the event. No one should be telling you this is "all in your head" even if it's not being found literally in your head. Once it's a seizure it's a seizure. It may not be resolved by attacking it at the brain level because that's not where the trigger lies. Still, the brain becomes temporarily involved.
What your were told about not being able to control your thoughts while unconscious really made little sense and sounded like either a gross misunderstanding of the problem or perhaps a cop out. You don't need to control your thoughts while unconscious: The goal is to not become unconscious because of your thoughts. The person who said that doesn't have a fine enough grasp of the complexity and yet the simplicity of this phenomenon. Rather than write extensively here about it I will provide you with a link to a website that may help clarify some of these finer points for you. It also discusses EMDR (eye movement desensitization and reprocessing), a highly specialized therapy which includeds CBT as part of the discipline. Here is the link: http://www.epilepsy.com/articles/ar_1112967056
Hang in there. Hopefully the next appointment will bring you closer to a resolution. The vasovagal part of this still needs to be explored, but may well co-exist with psychogenic non-epileptic seizures. They both may be resolved via one path. I certainly hope this is soon clarified for you and this problem resolved or at least opened up for you a great deal. Please keep us updated as to your progress.
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