Posts Tagged ‘amnesia’

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Do you want a support forum if you “cannot visualise”?

2010 September 10

(please read the FAQ page about what I mean: https://porillion.wordpress.com/visualisation-faqs/)

(This post is “sticky”, meaning it always appears at the top. Please scroll down for the latest post.)

I have not yet found an online forum for support for this problem, which I now feel given my complete lack of medical or other support I now need and so others may to. If you would like me to look into forming one then please comment on this post (you will have to give your e-mail address, but only I can see that). If enough people ask for it, then I will look into setting one up.

(Please state clearly that you are interested!)

Please note that although I ask you to leave your e-mail address when making your comment, it is not displayed and no-one but me can see it.

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Visualization, Forming Mental Images and Episodic Memory: Updates to Come.

2010 September 10

If you are unable to visualize or form mental images (including recall of past events), I hope you will be interested in the upcoming changes to this site:

  • I am considering setting up an online support forum. If you are interested, please read the following post and leave a comment there (not here, please about this): https://porillion.wordpress.com/2010/09/10/do-you-want-a-support-forum-if-you-cannot-visualise/
  • In the two years since I first wrote about my own experience with a loss of the ability to visualize and an inability to recall visual past events, many people have commented and I have now found quite a lot of new research into episodic memory, visualization, projection into the future, and so on. I am now in the process of putting that together to update this information. You will be able to start, as now, from the Visualization FAQs page, from which I will link to a new series of posts. The evidence is consistent with the set of problems that people have reported, and it may now be possible to begin suggesting medical and non-medical causes; though there does not yet appear to be any one such. It may also help anyone wishing to raise the problems with their family doctor or a specialist, as I will then be able to give links to that research.
  • I will create a dedicated post from which you can comment, if you wish, with your own experiences. This seems a better approach than the old one where people commented all over the place. More on that later.

Take care.

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The Memory Clinic: Outcome

2010 September 8

My partner and I went to the memory clinic yesterday. (If you’re unfamiliar with why, you can read this here: https://porillion.wordpress.com/2010/09/02/i-am-going-to-a-memory-clinic-next-week/)

Unfortunately, the results were pretty much what I had expected. Readers about visualisation and episodic memory problems may not know about the experience of others like myself who also have visual snow. Essentially, many co-sufferers have reported ignorance from medical practitioners – even being told that they are “imagining it”. I was fortunate to have found medical evidence to back up my concerns when I saw my GP and my pain consultant. This is why I have a diagnosis of “persistent aura” with my “complicated migraine”. But I had no such evidence to back up my concerns when I visited the clinic yesterday regarding my visualisation deficit and episodic memory recall problems; and the learning problems I have that appear to relate.

Before attending the clinic, my partner and I had been asked to complete a questionnaire and hand it to reception when we arrived, which we did. I then had a ten minute structured question and answer session, asking for things like: As many animals beginning with “p” that I could think of (timed); to write a sentence, any sentence; to identify pictures of items by name and by association with ideas like “nautical” (e.g., for an anchor) or “royal” (e.g., for a crown). The only one I struggled with was a made up name and address. This I was read, and had to repeat back, three times at the beginning, and then recall specific pieces of information from at the end. None of these tests were for visual recall either short-term or long-term.

I was then seen by a registrar, whose bedside manner was similar to House. From the offset, he was dismissive and, it seemed to my partner and I, negative towards our being there. He took a general medical history (which I recall from factual narrative, and note is not a test of detail or of visual recall), and then a general chat which was obviously testing factual recall of everday things like: What do you like to do to relax, or what films do you like? My partner is a staff nurse of fourteen years’ experience, and she said that I make extensive use of a notebook and a computer-organized list to cope with daily living. She also told him that she regularly shows me how to do new things (such as various things to do with cooking), and that I later not only forget what she has shown me, but that she has shown me. I said that I used to support Microsoft Office (before becoming too ill to work with migraine), but that I have had to abandon trying to learn the new version, because its interface is so different. And I said that we recently passed a ruined tower that interersted me, but that I genuinely thought (and still believe) I have not passed before – even though my partner tells me that we had and that I commented on it enthusiastically previously. Despite all of this, his conclusion was that for the most part I was simply choosing to ignore things that didn’t interest me, because I was “eccentric”, and that at my age (just past 40) I wouldn’t change. We were so gobsmacked that we left without pressing him further.

My impression was that he thought I was computer- and filmed-obsessed, that I was uninterested in anything else (such as cooking), that because of this I would never focus on these tasks and never learn them; and most of all, that I was rigid in using my computer to guide my chores and so on because I liked it that way, and not because that was what I had to do to remember to do things (like bathe if I cannot do so on the day I’d normally wash; otherwise forgetting that I hadn’t done so).

This, to my mind, echoes the treatment, as I said, that sufferers of visual snow often get. So my suggestion to anyone thinking of trying this route themselves is the same as to those with visual snow: Go prepared. For this specific situation, expect there to be no communication that your problems are with visualisation, visual recall and detailed episodic memory. You’ll need to prepare well in advance if, like me, you are affected badly with thinking on your feet and projecting yourself into the future. Don’t expect to be tested for visual related items at all: I’m not sure how you can stress that you should be.

On the plus side, he did at least suggest some medical or medically-related factors that affect memory: Such as any former incidents of depression, and in my case my persistent aura and migraine attacks and even the Epilim that I take as a preventative. But I cannot confidently take his conclusion that there was no medical problem on faith, given our overall negative impression.

I have however, done a quick bit of online research from the usual reliable sources, and note that there have been some updates since I wrote in 2008. So I plan to update the FAQs and series on visualisation as soon as possible, and in light of the many comments you have made since then.

The whole episode makes the joke of the statement that my learning difficulties are an invisible problem.

Take care.

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Student Doctors & My Neurologist (2nd Correction)

2009 June 2

This last eight days has seen a lot of changes for me. Last Tuesday I had my last appointment with my neurologist. He has now done as much as he can to control the pain symptoms of my migraine. These come from damage to my neck. My prescription of the anti-epileptic drug Epilim (sodium valproate) has helped the pain migraines. But I still suffer a lot of debilitating non-pain migraine with aura. At least things are going in the right direction. Though I seem to again be in a cluster of attacks.

On a much more positive note, today I sat in with some student doctors. Some months ago my GP (family doctor) asked if I would do so. They asked me a lot of questions about the “complicated migraine” I suffer. This gave me an opportunity to also talk about the fact I am unable to visualise (see things in my “mind’s eye”). And that I have no visual episodic memory (memory for life events). I talk about this further in the Visualisation FAQs page, and the series linked to there. My hope is that this may bring it to the attention of neurology researchers.

If you have any combination of these symptoms, I would like to hear from you. You can either comment – there is a discussion at the end of “Cannot Visualise (Part Three)“. Or you can, if you prefer, e-mail me privately at nospamporillion@hotmail.co.uk – just remove the “nospam” part!

(I’ve corrected the e-mail address above.)

(Oops! I forgot to add the combination of symptoms. If you have any combination of these symptoms…):-

  • Migraine, and/or,
  • Persistent aura, and/or,
  • Visual snow, and/or,
  • Inability or poor ability to visualise, and/or,
  • Poor visual episodic memory.
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Cannot Visualise (Part Three) (Last Edited: 2010 Sep 25)

2008 December 6

Go back to Part 2

This is the final part of a three part series about migraine. You can use the links above or at the end of this page to go back. Or you can jump to any part from the Visualisation FAQs page link; where you can read my list of reported problems.

Please note: This series is now very out of date. I am in the process of updating them with new research that I have found. To learn more, please click this link: https://porillion.wordpress.com/2010/09/10/visualization-forming-mental-images-and-episodic-memory-updates-to-come/

I am also thinking about setting up an online support forum for people with no/low visualization. If you would be interested in this, please leave a comment to the post: https://porillion.wordpress.com/2010/09/10/do-you-want-a-support-forum-if-you-cannot-visualise/


In this final part of the series, I talk about my memory problems. There are two clear aspects about them. The first is that I can’t be sure how much relates to my inability to visualise. The second is that medical science doesn’t seem to recognise persistent episodic amnesia as a condition.

The only people I’ve met who say they have as bad an inability to visualise also say they have very poor episodic memory. So I suspect the two are related. This is why I have taken to calling the condition persistent visualisation deficit, or PVD.

One phrase one of the two people used sums up the condition as it can refer to any event not just parting from a loved one. Writing in a thread (which unfortunately I have lost the link to), he said that when he left someone he loved it was like they no longer existed. At first he found this very distressing. In some ways, there was a sense of loss. After all, if it was someone he cared about he couldn’t picture their face at all. After a while, he slowly came to adapt to the ‘loss’ and the emotion lessened. For him, this became another source of discomfort, because now he felt that somehow this meant he didn’t really care. Which, he said, is clearly not how he felt when he was with the loved one. You can substitute the particular event – leaving a loved one – with any change during a day.

I have described it to the few I’ve talked to about it like this. Imagine you have a collection of many photographic albums. In them you have all the pictures you have taken during your life to date. You have lots of fond memories, and some not so fond. You have important reminders, including things your friends and family have said in conversations. They are special albums, as touching a photo also repeats what was said in those conversations. Below each picture you have a few words like, “Paul and I in Spain in April 2000”.

Now, imagine someone has stolen all the talking photographs from your albums. You no longer have access to any of the vivid images from your past. Worse, you can no longer recall the conversations even from earlier in the week; never mind further back. All you have left are the short summaries. These are all that now hold the thread of your life together. So you know that you and Paul went to Spain in April 2000 (factual); but you can recall nothing without at least a lot of time and effort (episodic).

This is what it is like to live with PVD. Now imagine work and social environments. In a work environment, you can compensate by fixating on certain really vivid and unique features, say, like the clothes a customer wore when he visited. So if he visits again later, you may recall him. If your work has a visit log, then you can adapt and ‘cheat’ by working the conversation round to a way you can look up the visit. Carrying around and using a notebook is usually acceptable in work. In fact, with time and effort you can find any number of ways to adapt…

…except to social situations. Here you don’t have software to help you. And carrying around and using a notebook isn’t usually acceptable in social situations!! So now you find it very hard to adapt. You forget conversations. So you struggle to keep up with chit chat. By the time you recall, if you recall, what was said a day or more ago, the conversation has moved on. Worse, you forget important things – not just people’s names and faces, but that they said their brother was diagnosed with kidney failure.

To others, you may come across as forgetful (true) or worse, selfish and uncaring; socially awkward. In the end, this becomes isolating. And when you turn to medical science for help and answers, there is blank non-acceptance that there’s any problem.

At this time, I have no answer. Are we three the only people on the planet who cannot visualise and have persistent episodic amnesia? Are the two related as PVD? Is migraine in any way involved – one of the other two also has migraine; though this is a common condition. To date, I have no evidence that migraine plays a part, except that my migraine and PVD started sometime around the same point in my life.

  • Do you have persistent episodic amnesia? If so, do you have problems visualising too? Do you have migraine?
  • Or, if you have migraine or problems visualising, do you have what you see as normal episodic memory (memory and recall of life events, casual conversation and so on)?
  • Finally, are you a medical practitioner or researcher who has heard of something like PVD? Can you put a medical name to it?

If you can provide any answers, or if what I have written rings a bell with you and you have no answer, I’d like to hear from you.

Thank you for reading.

Go back to Part 2

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Welcome

2008 June 27

Thanks for visiting today.

I will be starting my new blog on Friday 1st August.

I will be writing on a number of topics. I hope you will feel able to contribute constructively with your own experiences or questions.

1. Inability or Limited Ability to Visualise (“Cannot visualise”, “unable to visualise”).

For many years now I have noticed that I can no longer bring forward detailed images in my mind’s eye. I can provide some descriptive details about things, but cannot actually picture the image clearly. For example, I can describe a ripe banana as a curved yellow fruit often with a polygonal shape in cross-section with a tough outer blotchy skin and soft interior, and the fruit tapering at either end.

The variation is ability to visualise seems only recently to have been acknowledged medically. So far I have found only one study, but this has found correlations between both functional magnetic resonance imaging (fMRI) and novel psychophysiological test and test subjects’ subjective appraisal of their ability to visualise.

I offer a forum to others who experience this or who wish to understand more about the phenomenon. I especially would like to hear from researchers or medical practitioners who know more about it.

2. Poor Visual Memory Recall (With Poor Episodic Memory).

I think, though ironically cannot be certain, that before I first encountered the visualisation problem described above, I had near-photographic memory. Since then my memory also deteriorated. I can best describe the situation now as like having a photo album in which someone else wrote vague descriptions on my life events such as “I think that was so-and-so”, or “I think I was in such-and-such place”, or “This would be about 1994”, and then removed all the photographs. As such when asked to rely on episodic memory recall this can be unreliable. Linguistically descriptive recollection can take me so far. In work environments I compensate by taking organised notes (and making use of any supplied software). In social environments it makes small-talk difficult, since I cannot so easily organise the things others have said and the time to recall past events by other routes often means the conversation has moved on. It also makes finding questions to ask others about themselves difficult. As a result, I find many friendships don’t last.

The memory problem also does not appear to be described at all in medical literature. This may explain why I have had no luck in getting any kind of response at all from doctors on this. I do know of two other people who say they have this problem, both of which also report inability to visualise.

I note that the memory must exist in order for the description to be possible, and because I have vivid dreams. But places visited or lived in after the problem first started are substituted by others that have some contextual similarity. For example, the university I recently worked at may appear as my high school from before the start of this condition.

I offer a forum to others who experience this or who wish to understand more about the phenomenon. I especially would like to hear from researchers or medical practitioners who know more about it.

3. Migraine.

I am currently unable to work because of migraine attacks (usually with aura) between 1 and 2 per week, with significant variation. The memory problem above, and lack of medical recognition, also means that it is difficult to help my consultant diagnostically when he asks such questions as “Do your migraine attacks favour the left or right side of your head?”

The problem is complicated because I also have 10% mobility in my neck and shoulder muscles that itself causes chronic (and possibly acute) head pain. At present I am unclear whether this is related to an underlying migraine cause, or is a distinct condition. I have noted one classical migraine attack after which my neck movement freed up for a short while, though. Chronic pain is that which persists over a long period, acute is usually much shorter (though acute migraine pain can last up to 72 hours in rare occurrences).

Migraine aura mean neurological phenomena usually of a subjective nature that the sufferer can observe but is not observable to another (with certain exceptions, such as vomiting). Common acute examples include:

  • Nausea,
  • Pins and needles followed by numbness,
  • Scintillating scotoma – a visual effect characterised by flickering bright light.

Other aura that seem to be chronic include:

  • “Visual snow” – an appearance like dancing fireflies but in bright light such as when looking at blue sky (not entirely sure if this is the right name),
  • Palinopsia – a variation of the normal “afterimages” seen to persist after looking at a bright light,
  • “Spontaneous afterimages” in which such afterimages appear without stimulus,
  • “Pinpoint flashes” – brief, tiny and infrequent flashes of light in a dark environment,
  • “Twitches” – twitching of individual muscle fibres or nerves.

These are examples of chronic aura that I have. The first two are described medically and associated with a variant of migraine called “persistent aura without infarction”, in which the sufferer basically has a prolonged aura state. This is poorly understood at present. The latter three are examples I gave other sufferers in a forum, which some agreed they also have. I have been unable to find specific medical descriptions for these.

I offer a forum to others who experience this or who wish to understand more about the phenomenon.

4. Dynamical Systems.

These relate to a certain class of systems across many scientific disciplines (such as physics, chemistry, biology and so on), that display self-organising behaviour. Strictly, though, the mathematical description relates to the mathematical description of systems’ behaviour in its ambient space. This relates to an area of mathematics and interrelated disciplines called complexity theory.

One theory of migraine causation suggests that scintillating scotoma are the sufferer’s observed result of a cortical spreading depression. This is an example of a self-propagating wave of cellular depolarisation in the structure in the brain concerned with memory, attention, awareness and so on called the cortex.

I believe much of the work in this field may have application in sociology and psychology also, and be translatable into a new approach to philosophy. I would like to have taken up research on this and had a place at Warwick University in England, a leading university in psychological research. But health problems and employment instability have meant I could not afford to take up the place. But I have maintained an amateur interest.

5. Buddhism.

I am also a practising Buddhist, though not member of a geographical sangha at present because of health constraints.

6. Creative Writing and Writing Novels and Screenplays.

In the past I have enjoyed writing short stories, within the limitations imposed by my problems with visualisation and memory. With the availability of the Internet and sites such as Flickr, I can now search for and find information and images to describe that overcome the handicap.

I am working on a theory of the story, and am working on a screenplay and on a novel. I swap between the two whenever I get stuck on one of them! I will share the ups and downs of this process.

I look forward to meeting you.