You think ME is bad - try having a "Psychogenic movement disorder"!

[Chrisb]

Perhaps they didn't want to know the soldiers about the effects of chemical warfare as this could have lead to a decline of morale and willingness to fight.

Another simple explanation is that no one understood the effects of chemical injury on the brain well and no one could give a clear answer. Then as always, the shrinks took over and claimed they fully understood the illness and were able to treat it. If it didn't work they blamed the victim not the therapy.

I fear that I am taking this thread back some way, as it has moved on whilst I have been otherwise engaged. However it might be of interest to some to tie up this loose end.

"Both gas experts, Colonel Elliot and Colonel Soltau, referred to the fact that gas is a very potent cause of functional disturbances of the nervous system, and especially were they to arise as a result of the arsine group of arsenic compounds.

Arsine in a concentration of one in ten to fifteen million has a profound mental and moral effect in addition to its slight physical effects. The physical effects are rapid and very transient, and arsenic as the Germans used it, caused few fatalities. From the point of view of knocking out men temporarily, and setting up a chain of nervous symptoms, it was the best gas they could possibly have used.

It reduces the vitality in one in forty million concentration, so that many emotional cases may arise as a result of the infinitesimal dose."

This quotation is taken from The Report of the War Office Committee of Enquiry into Shell Shock" of 1922, page 108. It is curious that this was known but has never received much publicity. It seems to have been forgotten by all except Chipmunk1.

Why this is relevant to the current thread is that the authorities seem to have been quite happy for diagnoses of "emotional" shell shock, or neurasthenia, to be made despite their own experts being fully aware of possible aetiology consistent with reported and observed physical symptoms.

The experts views on the concentrations might indicate Allied research on the subject. These opinions seem very odd when compared to the general lack of information as to usage of these gases, in comparison with the better known ones. There may have been a mutual interest in not proclaiming this information too loudly.

Fortunately this Report was not a complete waste of time and valuable lessons could be learned by future researchers:

"Unfortunately we have been unable to obtain any reliable statistics covering cases of shell shock. It would have been desirable to record the number of cases of the disorder under the general term "shell shock," and to supply tables giving figures of the varieties of disorder classified under that head. The Committee have failed to obtain this information. Much statistical matter was unavoidably lost during the progress of the war, and other material of a statistical kind, buried in the archives of the War Office and other Departments, is at present inaccessible. The Committee were advised ...that it could not, in fact, be obtained without a prohibitive amount of labour and expense......" Page 7

I think they forgot to add that much had been force fed to regimental mascots.

 

[Woolie]

@Jeckylberry, just thought of an article you might particularly appreciate, but maybe others out there too. Its a really intelligent thoughtful piece written by a woman who about her experiences being diagnosed with a psychogenic neurological disorder.

http://www.madinamerica.com/2015/04/turning-patients-numbers/

 

[Jeckylberry]

Wow!!!! Bridget is singing my song! I so relate to everything she is talking about! That quiet friendly, gentle prying of your own voice that knows they are wrong. Thanks for this, @Woolie it is very helpful and pertinent to my life story.

 

[jimells]

I have frequent collapses and seizure like episodes. I am known at the local hospital as having FND. Last hospital visit I was very weak and run down.

Again they didn't examine me much, just checked my slow walking-through-water action for a few meters, heard my resulting slurred speech. He nodded in absolute assurance. It's functional. Noted then ignored my tachycardia.

I'm guessing that physicians don't bother to check for orthostatic intolerance before waving their Psychogenic! magic wand over patients who can't stay vertical. It's easy to diagnose and doesn't take expensive medical toys to observe the Postural Tachychardia Syndrome (POTS) form of OI:

1. take the patient's pulse supine
2. the patient stands - take their pulse again; at 1, 5, 10 minutes is pretty standard
3. if heart rate increase is 30 or more, and blood pressure doesn't decrease much or all, it's probably POTS

When my POTS is really bad, I get weak, I can barely talk, my legs feel rubbery, and my right forearm sometimes develops a tremor. I get what looks to me to be a "hyperadrenergic state": feeling hot while hands and feet are cold and clammy and discolored, tachycardia, high blood pressure, shaking similar to shivering from cold, etc.

But via the "mind magic" of watching a liter of saline flow into my arm intravenously, my voice gets stronger and I feel a little better for a few days. And still the diagnosis remains, "primarily psychological".

 

[Jeckylberry]

Wow @jimells now you are describing my symptoms! I have never had my tachycardia tested or even mentioned apart from that single time and a nurse noted it down after I had a seizure - or "pseudo seizure" or "dissociative attack". I know,..it's so simple to test for it, too. Incidentally, after @Sidereal suggested POTS, I started doing that test. I'm having lots of educational fun with my Omron bp monitor. Of course this means that I'm becoming obsessed with symptoms so getting all functionally overlaid. Resting pulse is between 70 and 80. After 10 minutes it goes up to 115-125. When I get up to make a cuppa it goes up to 116, and after doing the laundry it's 136. Do you think I'm panicking, hysterical or is this more of a dissociative attack?

@jimells are you being wry or have you also been diagnosed with a psychogenic illness?

 

[Woolie]

I'm becoming obsessed with symptoms so getting all functionally overlaid

As we were discussing on another thread, the psychobabblers don't just claim as their own those patients without a confirmed organic disease, but also people with an organic diagnosis with symptoms that cannot be fully predicted by their disease markers (e.g, fatigue in lupus). And voila - functional overlay! A whole new category that will keep the babblers in business no matter what is found.

As @SOC so nicely put it, these guys will steal anything that isn't nailed down.

On a more serious note, I'm interested in your seizures, @Jeckylberry. It sounds like you think they may have something to do with cardiovascular factors, can you elaborate? I've always just assumed they were some sort of electrophysiological event as is the case for epileptic seizures. Maybe I'm wrong. Or maybe there are different mechanisms in different individuals.

 

[Jeckylberry]

Oh, I don't know what they are to be honest @Woolie . No one has been interested. I probably shouldn't call them seizures. I don't know enough about POTS or dysautonomia yet. To anyone that has witnessed them they are like epileptic, partial seizures. Everyone I have pressed for details says they are not like a psychotic turn - and some of the people I know have some experience. They report I am calm and get wobbly after exertion. My face visibly puffs up and my eyes go blank. They only last from a few seconds to 20 s. I get apnoea, slurring, blurred vision, facial droop on right side, ptosis on right side repetitive, distracted movements, clammy palms, puffy face, super dizzy and tics in the back - spasmodic, like hiccoughs, then going into the seizure I space out, can't communicate, just go into automatic, quite still but just laboured breathing due to apnoea, and staring, then come out like clearing from fog. Afterwards my pulse is tachy. It's different from the complete utter exhaustion that we all know and love. They've only started happening in the last four months but of course the neuro says it's dissociative attacks. I had an abnormal EEG but he blew that off as nothing. I didn't get to see it. Sorry to talk about this in the thread but I wanted to answer properly.

 

[Woolie]

That sounds horrible, @Jeckylberry. It must really affect where you go, what you do.

I think talking about it here is still on theme, as long as you're okay with it. Suggesting these seizures are psychogenic is just lazy thinking. What sort of psychological mechanism could manifest itself in right-sided facial droop? That's a very neurological feature. You'd need to at least have an proper well-thought out theory, and so far that one's going nowhere.

Some people say they are aware during the episode, and even recall it afterwards. Do you? Also, I'm interested in what triggers it, you say exertion is a trigger, have you noticed any others? People with epilepsy report their seizures can be brought on by intense stimulation (e.g., noise, flashing lights), stress, fear, exhaustion, sleep deprivation.

Of course, only if you feel okay answering.

 

[Cheshire]

Suggesting these seizures are psychogenic is just lazy thinking. What sort of psychological mechanism could manifest itself in right-sided facial droop? That's a very neurological feature.

Yes, suggesting it's purely psychogenic makes no sense. How could the "mind" do that? Apart from those who are satisfied with "the power of the mind over the matter", that looks more like a supernatural explanation, everyone that tries to explain this psychogenic assumption involves the brain at some point. Then, even if you consider the trigger to be "psychological" (stress...), how is it different from "real" epilepsy that can also be triggered by stress? Both are generated by the brain and can be affected by stress. The only difference is we know (part) of the pathophysiology in one case, and it remains elusive in the other. The problem is those who developed these psychogenic theories are not willing to surrender. When something abnormal is found, they always put that on to stress.

Even though, as this recent study suggests, happiness or sadness has no influence over our health.http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01087-9/abstract


Intellectual laziness, lack of curiosity, lack of scientific rigor and feeling of superiority are probably the psychosocial factors that triggers such a way of thinking.

 

[Jeckylberry]

Thanks for that. I don't mind talking about it if there are those who are interested. I really appreciate the chance to say something. Yes it's debilitating and horrible. I am even more limited than I was before. The people at my mosaic club where I attend every week have stopped calling ambulances since I get no help at the hospital. Instead they just give me cold cloths and keep an eye on me. They are such angels. They are appalled at how I'm treated and can't understand how this could be continually fobbed off. They always say how obviously physical it looks. They say the same thing - you can't make the way I look just happen from the mind. One lady is a first responder volunteer for the ambo service and she is convinced there's nothing psychological. We would all agree with you, @Cheshire . They say the same thing about intellectual laziness, lack of proper attention to detail and spoilt, over privileged superiority. It's driving us all nuts!

I am conscious but not aware during the seizures. I remember them like a dream. Triggers, well it's worse if it's hot, noisy and definitely flashing lights. They will happen more easily. I hesitate to talk about stress for obvious reasons but I think stress is caused by any of the above. However, it does seem to be exertion related. I am more likely to have them when concentrating on something - that's exercising my eyes. It also happens if I am sticking out my tongue, or moving the muscles in my face. I will get very slurry and even get apnoea. I have much less expression than I once did because of this. Vocal exercises can trigger it too. They focus on my walk but I find that moving my face, including eyes, is more tiring than walking and more likely to bring a seizure.

Added later: metallic blood-like taste

 

[jimells]

Do you think I'm panicking, hysterical or is this more of a dissociative attack?

None of the above. If thinking the wrong thoughts could somehow bring on these episodes, as soon as the episode starts the "wrong thoughts" would obviously end - so shouldn't that immediately end the episode and restore consciousness?

are you being wry or have you also been diagnosed with a psychogenic illness?

I've been dealing mental illness (depression) and the psych industry since high school - more than 40 years ago. So I'm quite familiar with what "depression" feels like - and feeling faint on standing isn't it. Anybody who has been diagnosed with "CFS" (my official diagnosis, since almost no US physician even knows what "M.E." stands for) has been diagnosed with a "psychogenic illness", because that is how the medical industry views it.

If you can find a competent physician there are several non-invasive tests that could inform a proper diagnosis. One is a portable EEG - they wire you up to a portable recording device then send you home for 24 hours. A Holter monitor works on the same idea but monitors heart rate and cardiac arrhythmias. Patients with suspected POTS and fainting can be tested on a tilt table.

Here's another cause of fainting episodes: "Vasovagal Syncope"

A vagal episode or vasovagal response or vasovagal attack[1] is a malaise mediated by the vagus nerve. When it leads to fainting, also known as a "syncope", it is called a vasovagal syncope, which is the most common type of fainting.[2]

Episodes of vasovagal response are typically recurrent and usually occur when ... exposed to a specific trigger. Prior to losing consciousness, the individual frequently experiences early signs or symptoms such as
lightheadedness,
nausea,
the feeling of being extremely hot or cold (accompanied by sweating),
ringing in the ears (tinnitus),
an uncomfortable feeling in the heart,
fuzzy thoughts, confusion,
a slight inability to speak/form words (sometimes combined with mild stuttering),
weakness and visual disturbances such as lights seeming too bright,
fuzzy or tunnel vision, black cloud-like spots in vision,
and a feeling of nervousness can occur as well.

The symptoms last for a few seconds before the loss of consciousness (if it is lost), which typically happens when the person is sitting up or standing.

When sufferers pass out, they fall down .. and, when in this position, effective blood flow to the brain is immediately restored, allowing the person to regain consciousness. If the person does not fall into a fully flat, supine position, and the head remains elevated above the trunk, a state similar to a seizure may result from the blood's inability to return quickly to the brain, and the neurons in the body will fire off and generally cause muscles to twitch very slightly but mostly remain very tense. Fainting occurs with a loss of oxygen to the brain.[4]

Note that this is an autonomic nervous system dysfunction - no "mind magic" required. Since it is the most common form of fainting (according to Wiki), there is zero excuse for any physician to be ignorant of these problems.

I had one of these episodes just recently. It was triggered by drinking my daily dose of psyllium husk fiber (umm, yum) maybe a bit too fast. I felt it hit the bottom of my stomach with a thud and a slight pain, followed by a much sharper pain, and immediately after that I start fainting (vision going black, weakness, etc). Fortunately I quickly realized that I needed to lay down or I would fall down.

The episode passed in a few minutes, but I felt awful for the rest of the day, showing quite a few signs of hypovolemia and what Wikipedia calls "Class II" circulatory shock. But I never bothered to call a doctor or ambulance, since obviously I have some kind of "mind magic" illness.

 

[Woolie]

Thanks, @Jeckylberry. From what you say here, your seizures sound very neurological. One of the reasons I asked about triggers is that if your seizures were a cardiovascular event - like the vasovagal syncope @jimells was mentioning - then I think they might be less likely to be triggered by mental activities (e.g., stimulation, concentration). Heat, exhaustion and fear/panic would seem to be potential triggers for either type of event (they have direct cardiovascular effects too), so they're probably less effective at telling us what's going on.

You don't need to worry about discussing stress here, we don't think there's anything the least bit "psychological" about your illness (except the effect it has on you!). But I understand your hesitation. Given what I've been through, if anyone even casually suggests that my illness could be exacerbated by mental stress, I tend to jump right down their throat!

Some people with your diagnosis (let's not say the word) report being aware during the seizure, but unable to respond or control it. Some can recall it afterwards (but not all). I think again this might suggest the event is not a vasovagal syncope, because people tend to black out completely during these. @jimells, did you black out during your event?

Its curious that you find moving your face so tiring, and that it can even bring on a seizure. If you feel like it, some time you could maybe tell us about your movement problems. I'd be interested to know when they started, whether there was any notable event (e.g., illness, injury) that occurred prior to their onset, what they feel like and any way they've changed since they first began.

Treatment: There is a type of CBT that's sometimes offered to people with epilepsy that might actually be of help to you. Its sort of the equivalent of pacing for ME. It teaches you to focus on your triggers (could be activities, or bodily states like thirst etc) and modify your behaviour so as to reduce them. You might decide to limit those activities only in certain contexts (e.g. in public), or you might try to avoid them altogether. Unfortunately, the trick in your case would be to find a therapist who could deliver this without going all psychodynamic on you. But you can still do a version of this yourself, by keeping a detailed log of each event, and anything you noted during the lead up. Its not a treatment, really, more of a management strategy. You may already be doing it anyway.

 

[Jeckylberry]

I sympathise, @jimells . Sorry to hear you are having such awful debilitating problems. I bet all your symptoms are put down to depression like that's supposed to make sense. it is 'mind magic" we are expected to believe and trust. It's ridiculous.

 

[Jeckylberry]

Ok, well, @Woolie , on 28 February, 2013 I was walking the ten minute walk to board the ferry to go to work one morning and I felt like I was immersed in water to the hip. Steps became effort full. I got to the ferry and was fine to catch the bus and get to work. On the walk back in the evening it happened again. This continued over the next two weeks with each day getting harder and the water walking would start sooner. Eventually I had to start getting a taxi just to get there. 10 minutes turned into 20 then to a complete standstill. After two weeks I started to lose my voice when I walked. Two weeks after that I started to stumble and fall when I moved around too much. I bought myself a motorised wheelchair so I didn't waste my energy getting to work. I'd get so exhausted from the briefest of effort. I started having hot flushes and puffy face, apnoea when I got tired and slurry speech, ptosis. It's been the same since 2013 until August this year when I started to have a metallic taste and these seizure like episodes.

I have a history of daytime excessive sleepiness, sleep apnoea and fatigue. My life had slowed down, work and study was part time, but I was ok, could still drive and do most things. Now I am very disabled.

 

[Woolie]

How awful, @Jeckylberry. You're very disabled, but without the community and social support that is normally offered in such cases. As far as I know, problems like these are uncommon in ME (but we're all very different, so always hard to say). You don't remember anything unusual happening in the period just before the first experience?

I suppose they've considered MS? Mild gait disturbance (milder than yours) seems to be a common feature in the early stages of MS as described in this paper. It has been suggested that gait problems may reflect delayed transmission through long loop movement pathways - which may explain why they're observed early, because timing is so crucial for these mechanisms to operate effectively. That does sound a little like your description of feeling like wading though water.

Many people with MS go through years of uncertainty before they get a definitive MS diagnosis - and often end up with a psychogenic diagnosis in the meantime. So just being tested the once does not preclude it (and before you get alarmed, it might not be MS, and even if it is, MS doesn't always mean the progressive kind you hear about, the most common form is relapsing-remitting MS, which does not necessarily progress, and can go into indefinite remission).

 

[Jeckylberry]

Thanks @Woolie , I really appreciate your interest and value your thoughts. I had an MRI back in 2013 which was clear so they ruled out MS. I've had no other imaging since. I don't know if there are any other tests. I wondered then and I still wonder if it is. I've thought of lots of dire things like pseudobulbar palsy and Parkinson's plus but I would be much worse now if it was those. My new doc is following the mitochondrial disease inquiry which is great. I'm seeing him again on Friday when I will show him my pulse readings. I know dysautonomic issues are a factor in Mito. My pulse doesn't seem to be crazy high like some people on here, though. Just scrapes the over 30bpm. I'm scared it's just going to get trashed as another functional overlay. Although if I'm scared my pulse might go higher,

Those tests mentioned in the MS trials, are they used on patients? Do they get people to get on treadmills or walk for ten minutes as diagnostic tests? I've not walked further than a few steps in a small surgery or a few meters down a corridor to be assessed.

 

[jimells]

I think again this might suggest the event is not a vasovagal syncope, because people tend to black out completely during these. @jimells, did you black out during your event?

No - I managed to get to the couch in time, although I believe it was a close call. I routinely get transient "grey-outs" when I stand up, but this was not transient - it steadily got worse until I lay down.

I bet all your symptoms are put down to depression like that's supposed to make sense.

Yes, exactly. Since i was adamant that I would not take any more antidepressants (I've tried more than I can shake a stick at) I am now a "non-compliant patient" and my punishment is that the doctor doesn't want to see me again for six months. It doesn't matter that some days I can barely get to the toilet - if I receive treatment and homecare that would just reinforce my "false illness beliefs" and perpetuate the illness.

My pulse doesn't seem to be crazy high like some people on here, though. Just scrapes the over 30bpm.

My illness was like that for a number of years, and an increase of 30 was enough for my previous physician to diagnose POTS, refer me to a tilt table test (which was "unremarkable"), and prescribe Florinef. It is only in the past few months that my heart rate (unmedicated) started going from 60 supine to 120 standing in about ten minutes.

I have found that it is very hard for the doctors to make reliable bp and heart rate observations in the clinic. By the time I travel to their office and wait (sitting up, of course) in the exam room for 45 minutes, my pulse and bp are already sky-high and the hyperadrenergic symptoms (cold, clammy, mottled hands and feet, etc) are well underway so that makes it impossible to get an accurate reading of the supine to standing bpm increase.

 

[Woolie]

I had an MRI back in 2013 which was clear so they ruled out MS. I've had no other imaging since. I don't know if there are any other tests.

I don't know the specifics, but there's a test they do which involves a lumbar puncture, where they look for a particular marker suggesting abnormal immune activity. A small portion of people with MS don't show these, but most do. The brain MRI looks for lesions in the white matter. I think there's also a test which looks at evoked potentials (electrophysiological responses to events), these are very good at revealing the time course of neural processing, so can show if there is unusual slowness in responding. There's also a "two points in time" rule, which means you're supposed to have had two significant episodes at two different points in time before the diagnosis is made. So as you can imagine, there may therefore be quite a delay in diagnosis for some people.

My new doc is following the mitochondrial disease inquiry which is great. I'm seeing him again on Friday when I will show him my pulse readings. I know dysautonomic issues are a factor in Mito. My pulse doesn't seem to be crazy high like some people on here, though. Just scrapes the over 30bpm. I'm scared it's just going to get trashed as another functional overlay

This sounds like a promising avenue. I hope it comes to something. I understand your worry about "functional overlay", hope your symptoms don't get written off like that.

Those tests mentioned in the MS trials, are they used on patients?

I think its just a short walk, but this research takes all sort of recordings which aren't part of the standard diagnostic workup.

Good luck with Friday!

 

[Jeckylberry]

I am now a "non-compliant patient" and my punishment is that the doctor doesn't want to see me again for six months. It doesn't matter that some days I can barely get to the toilet - if I receive treatment and homecare that would just reinforce my "false illness beliefs" and perpetuate the illness.

This is appalling. It's just unacceptable. How can they treat people like this? This is the result of the psychogenic fallacy and thinking that you have to starve it out of the patient. It hurts more when I hear about it happening to someone else. Is there any light on the horizon for you? It ridiculous that they expect ideal testing conditions in the surgery. Of course it's going to be skewed. They should factor that in. There should be ways to test it accurately. Since you have been diagnosed with POTS how come you aren't getting looked after according to your needs? Surely this is separate from the depression stuff. Can you see another doc?.

 

[Cheshire]

A bit off topic, but at the same time relevant to this discussion
My Doctors Said My Crippling Menstrual Pain Was “Fine”
Ever since I was 11 years old, I’ve experienced crippling, life-altering pain with my period. It took me 13 years to finally get a doctor to take me seriously.
http://www.xojane.com/healthy/endometriosis-diagnosis

Looking back on my whole experience, it still baffles me that no one trusted me to know my own body. From lying paralyzed in the nurse’s office in high school to blacking out after a pelvic exam at age 24, never once did a doctor seem to believe me when I said I needed help.

Why is that? Why are we so hesitant to believe that women can and should be stewards of their own bodies? That they know when something’s wrong or what their bodies need? That they should have the autonomy to speak for their bodies and to make decisions that impact them?