Our health care system is a little different with the NHS.However our problems are similar.not a lot is known about this syndrome and research is limited to specialist research hospitals.Like you as a patient General Medicine knows little or very little about the workings of this condition.A veriety of opinion is available on the web however my experience is that only specialist with experience of this condition should be approached.In the Uk The Institute of Neurology has been doing leading research for some years into a wide veriety of conditions of this nature.My recommendation would be to ask your doctor to approach them on a professional basis in order to share knowledge.You may also take a look at RCP site here on CBT
However opinions do differ however my experience is that a multi disaplinary approach is considered to be more effective as patients vairey.When treating or seeking medical help always Have some knowledge yourself of your condition,Only see doctors whom have and are treating similar conditions weekly.Try not to accept more drugs than necessary, CBT if you want to try it... is most effective if you find the right experienced practitioner (very few are known) and someone who you can build a relationship with.Agree a course or programme say 8-10 sessions (depending on severity) and measure before and afterwards the effects. In my experience twice a week is adequate.Don't be afraid to try something else at the end; but not before... if its not working for you.
Professional may approach the institute at http://www.ion.ucl.ac.uk/
I have suffered with seizures for 12 yrs. I have recently been told that all this time they have been pseudoseizures. I was told I have Conversion Disorder. Can you explain to me what that really is all about. I don' t know how to stop the seizures. If you have any info please let me know.
Okay that explains it. About the breathing. Mine is sqeezing also. and then when it lets up I take several breaths to catch up and then end up in a hyperventillation situation. Now that you mention it, I could have the trachea problem. It could explain some of my symptoms. I have also been having lock jaw also with mine. This is a more recent and new symptom. The thing with conversion is you never know what it is going to throw at you next. My tongue reminds me more of what a baby would do when they are spitting up. I have not had the paralysis in the tongue but thanks for the tip. I will keep that in mind. But I do have that spitting up reflex you would see in a baby.
Wow!!! I thought I had it bad but you have surely topped my symptoms. I feel really bad for you but I am glad your a fighter and are determined.
CBT Cognitive Behavial Therapy - You need someone with specific experience of conversion disorder (My doctor calls it an illness). You may need at least 9 sessions at the right part of the illness (too complicated to describe).
Breathing problems- Not sure what breathing problems you have but mine are manifested as seizure squeezing the jaw back restricting the trachea. Paralysis of the tongue has lead the tongue been sucked into the entrance of the throat causing an obstruction of both nose and throat. My advice from a senior nurse was to hang my head to the side or upside-down to re-establish a clear air pathway before I pass out.
What is a CBT specialist? I think you Ukians use different words or terminolgy than we do. :)
I also have chronic fatigue and fibromyalgia with my conversion disorder. I know what you mean about the seizures. There is no dignity with conversion. I have even come to know there is more dignity in a wheelchair than trying to walk like a spastic.
Everything you posted to my on July first, I can relate too.
I am having to go back to doctors because mine is taking turnfor worse. Seizures are so miserable and I hate the breathing problem I am now having when i start to seize. ITs' scarey. I just want it to stop. and the thing about this, is that you never know from one day to the next how it will manifest itself. aaarrggghhh..
I am now getting beyond trying to do the relaxtation. Nothing seems to help.
They say this is not a neurological disorder. Everything about this is neurological.
Anyways, hang in there. You seem to be a fighter. Your attitude is great. I feel as though my will to keep fighting is getting more difficult.
Sounds like you have really been through the ringer with this. Seems like a very extreme case. They say this can't kill you, I think that is garbage. I feel like I have one foot in the grave already. I want to talk to you some more about this but I just had surgery day before yesterday and not feeling too well at the moment but I do have some quesitons for you. so if you can give a day or two to get stronger. I definatly want to talk some more about this.
My heart really goes out to you. this disorder is aweful. I hate the seizures and the uncontrollable aspects of it. We truely are at its mercy.
Thanks for writing me and sharing your expereince with me. I have a big interest in this. Our medicine is behind the UK so it's good to talk to someone who is a little more up this.
Catch ya a little while later.
"All I remember is a floating sensation across the ward looking back at my body in the bed Yes this did not seem rashional to me so I forgot about it until I had me a few patients whom have had similar experiences.Examining some accient hindou texts which I had not see before had drawing very similar to my experiences.Two of my doctors were releived on my partial recovery and told me in confidence that they though I would not make it.I assume I had periods of unconciecness at which time the nursing staff had tride to resussitate me leaving yellow brues on my sternum.Oxford UK they have an onsite course for some weeks which they offer relaxation and other therapies.It has been so successful government now funds it.
I have been taught relaxation techniques, specialist CBT (you are lucky to find one there are only five in the UK who could treat me) Intensive support medically and socially.Treatment of physical symtoms occupational therapy and person management.I am now suffering from chonic fatique as I am a person who just see this as something I can shake off like every other illness I have had.The seizures are embrassising in public so I try to limit my day by breaking into three with a strict sleep between morning afternoon and evening.I find I am not concious of the triggers and beleive they appear as delayed reactions.The worst I have had is at a certain stage of its progression it will show feelings near to the surface wheen you can challenge them however during the early stages they maybe hidden so deep it is a waste of time even trying to cure them.I am also aware of the patients I have met that transition away from the home environment is very helpful in quiet isolation.This is not always possible where families are involved.A short while ago for my servre condition I would be placed in intensive care in a drug induced coma for six weeks in the hope the brain would recover.There is little evidence that this works at all and is likely to damage the overall health of the patient.Also I would suggest a diet of not caffiene,alchole,sugur or food colouring which have a stimulation effect.This gives the patient some control of what seems to be beyond your control.Sometime I have felt like a passenger.Last of all with partially sighted conditions like mine not having full emotional support will cause isolation and depression.
I am not sure what is going on with the Md's. Nobody seems to answer any questions anymore. Sounds like you have had quite tan experience.
"All I remember is a floating sensation across the ward looking back at my body in the bed "
I recently went unconscious with my conversion disorder for the first time. I lost a half a day. Very surreal not being able to member hours.
I was home alone and seizure so bad I tipped over in the recliner. I remember having the phone in my hand but that is all. I don't know who I was talking to or who called the EMT's. I don't remember having an IV shoved in my arm, put on a stretcher and taken by ambulance to the ER. I don't remember being in the ER. or walking to the truck or coming home.
Listen, I haven't had the blindness although my vision is blurred and I see multiple images of the same thing. I know this is scary and makes you really sick. I was diagnosed 5 years ago but think I have had it as a child or adolecent.
My seizures were so severe, it shoved my stomach up into my chest. Major life threatening surgery. They say you can't die from this but that is bull. There is a lot of potential for death or injury. They just don't tell you that.
Hang in there and don't give up the fight. IT sounds like your very positive and are a fighter. im glad of that.
There is more and more research being done in this area. Five years ago, you could hardly find anything on the INternet about this disorder. Now there are tons of pages. Please let me know if you have found any ground breaking news on this because I am in dire straits with this on top of breast cancer. so all in all I feel pretty sick and scared.
My question is difficult to ansawer. I am not comfortable been blind/semi blind as you can imagine but my eyes have not varied in six months.Eye consultants advise me they are 85% sure it is the conversion Sydrome but due to a mistagmus they cannot be sure of perminent damge.I have been told that in 15% of cases eye site does not return.What in your opinion is the likely length of time I should be accepting before this condition goes away?I have met patient that have this for some 9 years I am determined to get my life back but have an open medical outlook at the monment.
Developed serve covers ion syndrome after an unprovoked assault. Difficulties in finding diagnosis, specialist expertise and treatment. Visited world renowned Institute of Neurology The National Hospital in London UK.An made great improvements from paralysis to been able to walk again with a stick with unsteady gate. However since I have been cared for as a disabled person in the community I have made no more progress with less skilled doctors. Lack of support has meant the development of Chronic fatigue and threats of re-admission. Current status five months in specialist hospitals. Three months care in the community. Current status partially sighted, on epaleptive fits twice a day, internitent paralysis of limbs, restricted gate, voice, jaw impediments and chronic fatigue.
Yes I was diagnosed with Conversion Disorder in February 2008.Yes I had periods of unconscious according to my Neurologist and even given manual resustitation. All I remember is a floating sensation across the ward looking back at my body in the bed (very strange). Yes diagnosed with Bells Palsy on left side of face later to turn into the jaw locking up for 6 weeks and breathing difficulties. Although my legs were paralysed for three months or more I have great gate difficulties and facial spasm continually affecting my voice and eyesight continually. Yes there seems to be a link with cranial and physical activity to activate paralysis/fits.
I have a very strong will power and was determined to walk again. Also Dyslexic.
This case is currently been used for medical lecturers as a very rare and servre case.Much of it very well documented with film coverage.
I have a dilemma. Five years ago I was diagnosed with sever conversion disorder with psuedo seizures . My eeg was normal as well as all other tests as you know.
Lately, I my seizures are getting more frequent and breathing problems is now involved. constant pain in my head with strange visual disturbances. sometimes my seizures are associated with pain in my stomach.
Well, last week they did an other eeg and compared it to mine from five years ago. They called me and said that it had changed from the last one where I was diagnosed with conversion disorder. my neurologist is still going to be out of town for several more days. I am also a breast cancer patient who as far as we know is cancer free. I don't know what to think of the conversion diagnosis now. they said in my report that I scored 99.6%, which they said was greater than anything ever studied in any clinic. Now that the eeg has changed, I don't know what to think. please shed some light on this. thank you.
Conversion disorder is not considered a neurological disorder. Even though the symptoms are all neurological, it has it's origin in the psychology.
The trigger for a conversion episode is usually a period of stress and anxiety. The symptoms are very much true for the patient and he/she does not remember anything if the conversion involved unconsciousness.
Hence, there is no particular area of the brain that can be ascribed to conversion. There is research going on in this area. Some studies have come up with temporal lobe hypo perfusion theory. You might read this article.
Can you tell me if conversion disorder is all over in the brain given that it is a motor sensory or central nervous sytem. Does it all extend back to one specific location in the brain like the brain stem?
Correction: It took me 8 months to get diagnosed, not two years and 10 months to finally get help.
Dr. John Speed is a Conversion Disorder Specialist who did ground breaking work in this area. He is in the University of Utah, USA. (Physical Medicine Department). IF he cannot fix it, no one can in my opinion.
Sure sounds like conversion disorder to me. but I am not a physician. However, I was diagnosed with severe conversion disorder in 2003. In fact, on my medical report from the Doctor, it said that I tested 99.6%, which was greater than thing ever studied in clinics. Possibly indicating that I have the most severely documented case in the country. I can tell you things about this disorder that Doctors cannot tell you. I is capable of manifesting itself in very unusual ways. It is a viable medical problem. However, because stressors or trauma causes it, it was kicked into the Pychiatric department. Once you have weeded out organic abnormalities, and can still find no cause for the symptoms, it is wise to consider Conversion Disorder. It took me two years to get 8 months to get diagnosed. Hang in there. any questions just ask.
Your symptoms are mostly neurological. If all the tests are normal, one does think of Conversion disorder. Have you been diagnosed with conversion disorder ?
While we are trying to consider conversion disorder, I am thinking about the Bell's Palsy part of your symptoms. This is an unusual symptom. It is difficult to have unilateral paralysis of the face in conversion disorder.