Psychogenic Dysautonomia

[Becca_7706]

I was wondering what others knew of this disorder. Having seen someone for three times at the psychiatric clinic for therapy I've been told I'm too stressy and emotional to have the physical form - despite prof Mathias saying otherwise and requesting various tests/treatments from results that came to light after I left clinic (e.g. EEG problems).

I do not deny I am stressed out and very upset right now - for reasons I will not go into here but do not understand how not being bought up in a particular way and having had health problems all my life changes my diagnosis. I was wondering if anyone could shed any light? The psychiatric clinic say it makes no difference - psychogenic just means no organic problem. However, since this has been put on my notes the EEG problems have not been investigated, pain clinic referral has been stopped (as EDS/RSD has been labelled as psychogenic) and now my benefits are under question not to mention being bullied by work to do more hours because the psychiatric clinic say I'm letting myself become disabled by my health.

I'm not questioning their diagnosis - I don't have the strength to do that. I just don't understand how someone who has my symptoms and difficulties but had a happy childhood has a diagnosis of physical illness and treatments where as I am refused on this basis. Has that happened to anyone else here?

Becca

[Mrs. Burschman]

That is really crappy.

I don't even know what to suggest you do. Could you discuss it with Mathias or someone on his staff?

Doctors are WAAAAAY to quick to decide it's a psychiatric issue, if you ask me. Just because they don't understand it doesn't mean it doesn't exist!

We're here for you.

Amy

[MomtoGiuliana]

I'm so sorry for everything you are going through. It is definitely not unusal for emotional upset to make autonomic dysfunction worse--so the two can have a connection for sure. I think you DO have to question this, especially if an expert in the field has already diagnosed a physical disorder. How do these doctors providing the psychogenic diagnosis plan to treat your condition?

[morgan617]

I think there are more people here on this board that have been through this crap than haven't.

I don't know what to tell you though. I am on disability, in a wheel chair, have a pace maker, have had tests that prove my muscles paralyze, and I am still considered all psychogenic by many doctors. Unless they can prove unequivically you don't have physical ailments, they can't say it's all unequivically psychogenic.

However, no one ever needs to prove a psych diagnosis, like they do a physical one. They throw it out there like pebbles and it sticks like super glue. It's no secret that stress exacerbates our symptoms and makes them worse, or that that there is a mind body connection....but stating an absolute is very wrong, when it can't be proved and they offer no help.

Der, of course you are stressed and anxious by this, but which came first? It sounds like you are in the UK and I have absolutely no idea how they work over there, but maybe Dr. Mathias can discuss this with the jerks that are making your life even more miserable? Or, at least your work place. I guess I'd start there. So sorry you are going through this sweetie...HoHoHo...yea right. morgan

[pat57]

I was not aware that an EEG was useful in diagnosing Dysautonomia.

What were the "EEG problems"?

[persephone]

Hi Becca, have sent you a message :-) Don't accept the unacceptable

[Dawg Tired]

Yep, more of us have been through it than you would believe.

Been there, done that, wrote a book.....

[Becca_7706]

I have had such an awful day today coming here and reading your responses have reduced me to tears because I feel so understood by you.

Pat, the EEG showed epileptiform and some lobe issues. The EEG had to be stopped really early cos I felt unwell, my face spasmed (which happens just before a nasty syncope which are triggered by strobing usually) and the technician stopped the test saying everything was fine. However, prof kindly sent me a copy of his report and it says that these things showed up when it was formally analysed after I left clinic and said it needed further investigation by an epilepsiologist - okay that

definitely isn't spelt right a person who specialises in epilepsy. Problem is that my LHB won't fund me seeing anyone cos they say it is just syncope and not worth it.

Morgan, they plan to treat my psychogenic condition with betablockers, antidepressants and psychotherapy. The psychotherapy will not begin until I admit it is not physical and am willing to make the changes necessary e.g. stop fainting and letting my illnesses control what I am able to do and accept responsibility for it happening. Which I have tried already but they say I didn't put in enough effort in doing so and that's why I'm still ill. They are saying it is all caused by family problems when younger and not learning to cope properly. I've got to admit I've similar thoughts on the psychiatric diagnosis thing. I've asked them to show me how this is possible and why people who have my symptoms get treatments (I've only been allowed two) if they didn't have family problems but have got nowhere. I've got to admit they are stressing me even more with their comments

I know stress makes the problems worse and there are other things going on making things worse too, which I don't want to disclose here, but at least some of the issues could be sorted out if they would drop this 'official' diagnosis. I've got to admit to being nervous about approaching professor Mathias but perhaps I should if only to find out if he will see me again when his instructions have been ignored.

Thanks for the understanding I really appreciate it!

Becca

[dsdmom]

Becca,

I have to ask - who is the "they" you are referring to? Why do "they" have all of this power?0

[Becca_7706]

Becca,

I have to ask - who is the "they" you are referring to? Why do "they" have all of this power?0

Sorry. Bad habit I have calling people they. GP or psychiatric clinic (psychiatrist/CPN) as all others have discharged me including my physiotherapist.

The GP/Psychaitric clinic are the people contacted regarding my condition and its impact on my life. They (psychiatric clinic) say it has no impact on my life because it isn't happening as much as I say or impacting as much as I say. Because of this I can't get the help I need from social services (help with heating due to being disabled as at the moment I have none) or help at work without evidence of needing it. I guess that is the power thing. The GP was okay first couple of visits but at last visit said I needed to psychotherapy to find out why I don't want to cope and be happy and well, which has put a bit of a dampner on things. Also they did refer me to pain clinic but when pain clinic refused referral pending further tests they accepted it and I'm stuck again as the orthopod I was under is refusing to see me as she also says it is all psychogenic only.

Does that explain it?

[pat57]

Becca, my advise to you is see the epliespy Dr.

Will that be approved? Is there an appeal procedure?

FYI

Atonic seizures (also called drop seizures, drop attacks, or akinetic seizures), are a minor type of seizure. They consist of a brief lapse in muscle tone that are caused by temporary alterations in brain function. The seizures are brief - usually less than fifteen seconds.

That could certainly look like syncope.

[persephone]

Becca I would call PRof's secretary and tell her you need PRof to write to these people and explain POTS is a physical condition, especially given the EDS which we know is a root cause for dysautonomia.

0207 837 3611 for the switchboard at the NAtional.

I;d strongly suggest also getting in touch with PRof Grahame and Alan Hakim at UCLH and telling them what has happened- tell them what you hae told us.

Between them, those 3 sshould be able to help you feel a bit more empowered and validated.

[ajw4790]

Hi all!

First off, this sounds awful! I can't believe what they put people through!

I am only left scratching my head to how they end up with that conclusion- is that their way of saying they just don't know?

Is the psychogenic dysautonomia a real thing? I have never heard of it! What is it?

I am sorry. It really stinks, the only thing I can think of is to try to find a different dr. that may listen!

Hope it gets better!

[deucykub]

Hi, Becca:

Wow. I am so sorry that you are going through all this. You absolutely have the right to question this diagnosis. I've never heard of "psychogenic dysautonomia," and if it is not a medically verified illness (a.k.a. is it real?), then your doctor has a lot of nerve to not only hand out this diagnosis but to add discredit to dysautonomia diagnosees who are already struggling as it is to get well.

This is the first time I've ever been grateful that the U.S. doesn't have socialized medicine. At least if we get a screwy doctor or insurance refuses to pay, we can choose to go into debt and see the doctor of our choice to get better. I'm in total agreement with Persephone, please do get in touch with the doctor (Prof. Mathias?) who originally diagnosed you and rationally lay before him what has happened and ask for his help.

I completely understand what it is like to have someone/thing hold so much power over your life. You must be so frustrated. My workplace had a choice 18 months ago to either help me or not. They chose "not." So the last 18 months of my life has been fighting my employer (a U.S. agency) to get back to work. Their choice has resulted in my losing a year's equivalent salary, and I am (although I hate to say this, because I am a fighter) nearly powerless over their refusal to allow me to work. It is beyond all belief to sit by and watch someone else take control of your life. I am so, so very sorry that you are going through this with your healthcare system, doctors, and employer!!! I can't begin to imagine having to battle all three fronts.

Hang in there. Don't let "them" (i.e. all of the above) get you down. You have every right to feel upset and overwhelmed. It's natural to go through situational depression when facing so much stress and pressure. It's not in your head. We believe you and support you 100%.

Please keep us informed about what happens. You will be in my thoughts and prayers.

[pat57]

"A psychogenic reaction relates to symptoms unrelated to changes in heart rate or blood pressure."

http://www.cmaj.ca/cgi/content/full/164/3/372

Have you had a TTT?

also, I was wondering if you plan to follow up on the EEG issues.

[Becca_7706]

My news is that having spoken to a GP shortly before Christmas I discovered that the mental issues I've been having have been diagnosed as attention seeking and that I had been lied to regarding referrals. The pain clinic one has now gone through but will take about 18 months which is very depressing. The epilepsy referral cannot be done direct - they won't incur the cost (because it is so likely to be psychogenic only and a waste of time) so will also take a year at least

I have been having some quite severe mental health problems recently. My CPN (counsellor) has been supportive but things are continuing to get worse in that regard and he is now worried too. Right now I am more concerned for those problems than my physical ones because my ability to cope is nil right now. Everything is just getting too much for me. Which is why I've been avoiding logging in and reading posts, so for those who asked me to let them know things were okay, forgive me for worrying you, I just haven't been up to doing so.

Pat, yes I had TTT. Several times there was a vasodepressor response but I had no symptoms (but then I am symptomatic most of the time because of the EDS so that doesn't really mean anything). The only time it went really out was when the dr kept going on about blood being taken and getting me to pump my arm really really fast (which causes blackouts in me - the pumping not taking blood). I also have problems after eating too. I'd like to follow up the EEG thing but like I said above it'll be a long drawn out process.

I haven't contacted the Profs because I'm too scared of what they'll say.

Sorry this is a depressing post. Hope all are well!

[pat57]

http://www.recovery-inc.com/meetings/global.html#wales

Becca why don't you contact this person.

Its a GREAT program

IT WORKS

and its

FREE!

not to mention you can get support through friendships.

[sally]

Hello Becca,

Sorry to hear that you are getting such treatment. First, EDS is genetic not psychogenic and can cause problems with dysautonomia and other problems with fatigue and pain etc... If you have a diagnosis previously of EDS RSD and dysautonomia then don't let them shake your tree. Try to find someone else if possible in your situation that will help you cope with your illnesses and how to live better with them not mess with your head and make you doubt yourself and your body. It sounds like these people are purely on a power trip with the little bit of knowledge they may have on these disorders. Just because someone is in an authority position doesn't mean he isn't an idiot. And, if they are not helping with your self esteem and the coping process then they are NOT doing their job.

Unless you need these people for some type of paperwork to be filled out try your best to find someone else that understands you. There are a lot of books out that help people cope with chronic illnesses that you may get a lot more out of than being insulted by these people. Even if the book contains an illness that you don't have, the coping techniques are the same.

I know it's hard when your already down from illness to stay positive but don't let these people have power over your self being.

good luck and best wishes.

[darren]

Before I got sick I never really understood the "doctor's playing god" phrase. Now I understand. If they can't find a physical reason for what you are going through they will label it under mental health. There are two really interesting points to this first nearly all of the symptoms for dysautonmia will flag you for mental health simply because they are the same symptoms. Second your life is brought to a grinding halt and you can no longer do any of the things you enjoyed and you're having a hard time taking care of yourself it is depressing.

There is such a thing as being in a crappy situation that *****, its depressing. Nobody would not register enough symptoms to get flagged for mental health issues in your situation. If your in a situation like this and your smiling talking about what a grand day it is and how pretty the flowers outside that would suggest to me there is a problem.

To make it even worse I have no doubt that stress flairs up my POTS symptoms. Being in a stressful situation causes all sorts of chemical process to change inside your body. It isn't a mind thing its a chemical thing. You can't argue with it. And to top it all off when you feel terrible you don't even want to deal with the doctor. Just making a call for an appointment is too much.

I have been sent to a psychiatrist for a conversion disorder and diagnosed with POTS two days later. I think that Dr. still thinks I'm making it up. On top of that after having an 8 page study done that diagnoses me with POTS I had a neurologist tell me I didn't have it after 10 minutes without reading the study!

Its all a numbers game to them (the docs) that is how they train. The chances of you having a rare physical condition are far less than having a mental condition that makes you think you have a physical condition. Just by playing the numbers they can get it with 80% accuracy or more. On top of that they don't even understand how to diagnose you in the first place so if they try they will miss the mark.

I know your tired, out of fight. There is nothing that can be said to make you feel better because you feel terrible and its physical not mental. It takes us a little longer to get the wind back in our sails after being knocked down but you will get up. I can only say this because I actually feel good today so thought I would get it out.

The EEG, it was actually a heart harness I wore for 24 hours is what actually flagged the doc that there was a problem. It was only after literally months that I got her to send me out for a tilt table test. The thing about POTS is it changes hourly. Its like trying to get your computer fixed for a problem that only happens sometimes and you can't replicate the conditions.

[ehl5]

Ugh, I hate doctors. Best of luck to you in fighting this!

[persephone]

Becca- I strngly urge you to get on the phone either to Prof Mathias or to Prof Grahame at UCLH. If things are as bad as you say, what do you have to lose?

so many folks with dysautonomia have been in your position.

Perhaps knowing of this misdiagnosis is making your frame of mind and mental state worse.

At least speak to someone who is an autonomic specialist; I'm sure i remember you telling me that your current doctors don't know about it.

don't let these ignorant medics make you a victim; get some power and control back!

[Becca_7706]

Hi Persephone,

I am considering it. There are things that are happening that I have glossed over though to do with my mental health which I'm a bit worried about telling them. Have you contacted either of them yourself (can't remember if you said you had)?

Becca

Becca- I strngly urge you to get on the phone either to Prof Mathias or to Prof Grahame at UCLH. If things are as bad as you say, what do you have to lose?

so many folks with dysautonomia have been in your position.

Perhaps knowing of this misdiagnosis is making your frame of mind and mental state worse.

At least speak to someone who is an autonomic specialist; I'm sure i remember you telling me that your current doctors don't know about it.

don't let these ignorant medics make you a victim; get some power and control back!

[morgan617]

It's sad that you have to "gloss over things" because if you are truthful, you won't get help for the real physical stuff. I am not in the UK, but have been pigeon holed in quite the same manner here where I live. One psych diagnosis and it's all over.....anything physical magically disappears...isn't it great how that works? If only some one would tell my body it works that way....

I wrote a letter to my primary telling him I have been more abused by doctors in my life than any other abuse I have suffered, whether physical, sexual, or mental....how pathetic is that. morgan

[Becca_7706]

Morgan,

It isn't pathetic. It is sad and I say that because it is exactly how I am feeling right now. I saw a counsellor last week who told me I should start seeing how stressful and upsetting it is for my doctors seeing someone like me!! He did conceed when I explained that in fact it was anything but upsetting for them - they can walk away and forget about it - we cannot.

Becca

I wrote a letter to my primary telling him I have been more abused by doctors in my life than any other abuse I have suffered, whether physical, sexual, or mental....how pathetic is that. morgan

[persephone]

Yes, Becca, I've contacted them both in the past when symptoms got worse.

You have nothing to lose.

MAthias knows what to look for.

You need a tilt test under the right conditions. I had 3 false-negatives because they weren't done properly. When I finally found someone who was very precise- a quiet, dark room, very warm and relaxing- my body's anxiety reflexes went away, meaning that my readings were realistic rather than superficially high and therefore normal bp.

what we actually saw was worse than we all expected- my bp flatlined completely, and I went blue and convulsed on one side. There was no arguing after that - but it took TWELVE YEARS to get the right test and the right result.

You need to relax- try something holistic like acupuncture, where the focus isn't on diagnosis or categorisation but in fact relief of suffering. Once you feel calmer and more in control, you will be able to face NHS challenges.

How often are you fainting? Are you about to do any reading to distract yourself? Anything on medieval welsh, perhaps? What about looking up some postgrad courses, like we mentioned? Or writing a blog? SOMETHING is better than nothing- don't let this eat into your brain power- you are a very bright young woman.

LEt us know how you are