Memories don't feel real - is it just me?

[peggy-sue]

I often got wee bouts of "depersonalisation" even before I got ill.
I always thought they were just normal.
And another one where it feels really weird to think that I am me, absolutely and utterly alone inside this body, but that I'm observing it from outside.
Completely different to "fog", and completely different to the strange one when I was on amitriptyline where I felt as if my feet were miles away from my head... I couldn't believe how far away there were when I looked down at them - enough to make me topple over!

 

[adreno]

Feelings of dissociation are most likely tied to glutamate imbalance.

 

[jeffrez]

Those kinds of experiences are often tied to temporal lobe dysfunction. EEG neurofeedback could probably help readjust the brainwaves to function more optimally again.

 

[WillowJ]

about depersonalization/derealization: this is also a symptom of migraine (the aura kind) or seizure. these diseases are, among other things, likely related to vascular damage in the brain. which is also something postulated in ME/CFS.

 

[Tammy]

I definitely get that odd sense that life/things don't feel real.............I am going through the motions but in a very kind of detached way..............I hate that feeling.

adreno.............a glutamate imbalance........which way? What do you suggest?

 

[Antares in NYC]

Since having ME/CFS as well as the usual symptoms we talk about I also get a kind of thing where memories, even of yesterday or whatever don't seem quite real. Like I didn't live them, kind of like watching it on TV. I can tell you what happened, I've seen it, but I feel disconnected from it like it wasn't me, or something like that. Makes time pass by quickly too, the four years i have been ill has flown by i think in part because of this. Not sure I am explaining it that well. Does anyone else get this? I've assumed it's a symptom of the illness but thought I'd ask.

True, Snowathlete. Absolutely true in my case. Memories are extremely faint, disjointed, out of context, and often feel like old dreams, not real. As my ME/CFS progresses (for the last couple of years I have been worsening badly), old memories feel more and more like dreams, and at times it's difficult to tell if something really happened, or if I dreamed it. I'm terrified by this.

I have also noted something else about my memory and sense of time that I hope some folks here may relate. Please bare with me, it's a bit difficult to explain. Here we go:

MEMORY BEFORE I HAD CFS

• I had a clear sense of timing, a sense of "narrative", for lack of a better word.
• There was a clear sense of "now", of what happened earlier, what happened yesterday, what happened a year ago, what took place in my childhood, etc. Time had a scale, an order that made sense.
• The older the memory of an event, the fainter it felt. Nevertheless, there was a sense of structure, a sense of narrative in the progression of time. Older events felt fainter, recent events felt fresh and clearer.

MEMORY AFTER I DEVELOPED CFS

• The sense of "time narrative" disappeared.
• There's a distinction between "now" and the past... but all past events feel the same! All past events feel equally faint. Be it this morning's breakfast, or my college graduation, or my childhood friends, they all feel faint and diffused, like trying to recollect a dream.
• Broken sense of time narrative: I often can't tell when things happened in the past. Now it's all a jumble of scattered faint events with no rhyme or reason.

Also this sense of "broken narrative" applies to when I watch films or try to read books. Half way through a story I forget the beginning, or a crucial section, and have to start over and over again. It's torture. Films that I knew by heart feel alien and often unrecognizable. It truly sucks.

To me, personally, the cognitive devastation of CFS has been the most tragic thing of this ordeal. The brain-fog, memory, concentration, and sleep issues have wreaked havoc in my career prospects, and severely limited my hopes and dreams.

 

[Beyond]

I have this and sometimes it extends to the present as well. Depersonalization, derealization. It is simple to me, the worse your body/computer works the less you "feel alive". Less hormones, less nutrients, less neuros = less awareness. That is why kids are always laughing genuinely and jumping around enthusiastically while older people are way more sleepy and cranky (and suicidal according to statistics). Pure physiology. The same happens with animals. Literally we are more leaning towards the death reign (static, slow, forgetful...) than life (wow that is really very tough), so is natural that the "real" world and the memories of it look less real, as it happens when people are very old or dying.

Interestingly enough the word "lethal" comes from the the greek river of the Underworld "Lethe" in which the souls drink a water that erase or blocks their memories. The Greeks understood that memories are Life and losing them is the real death and not the withering of the flesh container. Undoubtely the cogntive are the worst symptoms of this IMO.

My memories of the "healthy years" are very odd, really like a movie or a story. They are also painfully scarce. We are very different that healthy boy and me. I think I am better intellectual and spiritually but he would probably win me in a race.

The years that I have been ill are clumped together in a stain of despair, the feeling of a strong will and a constant search. Days pass slowwww, weeks fast, months faster and looking back years have passed quickly.

 

[Soundthealarm21]

I live in a state of constant derealization. It gets worse the more tired I am. It's an incredibly frightening thing to have to convince yourself you're not dreaming. My thoughts are that it comes, for me, mostly from sleep deprivation. I sleep plenty of hours, but cannot the remember the last time I woke up feeling refreshed. The only times I've felt that same mental clarity from childhood was when I took adderall from a friend just a couple times, but there is no way i'd ever take that long term.

 

[Bob]

I live in a state of constant derealization. It gets worse the more tired I am. It's an incredibly frightening thing to have to convince yourself you're not dreaming. My thoughts are that it comes, for me, mostly from sleep deprivation. I sleep plenty of hours, but cannot the remember the last time I woke up feeling refreshed. The only times I've felt that same mental clarity from childhood was when I took adderall from a friend just a couple times, but there is no way i'd ever take that long term.

Luckily I only experience this sort of phenomenon occasionally, when most tired or most ill. You've probably tried everything to help yourself already, but if you haven't tried it already, try giving yourself total mental rest for a few days, or longer. I occasionally have to do this, when I've done too much mental activity. I can watch TV, without taxing my brain, so I can spend time watching TV to rest, but I know that others need a quiet darkened room to totally rest their brains.

 

[Aerose91]

I am so badly dissociated that I can no longer see that there's even any reality out there past this haze. This hit me immediately at the onset of my ME and has gotten progressively worse as I overexert. It's mostly a distance from the now, however my past is insanely dim as well. Anything I did a few hours ago feels like a distant memory from childhood if I can even remember it. I have zero recollection of any time further back than 1 day. After a day goes by ill never be able to call the previous day up again.

My dissociation extends FAR beyond that tho. I have lost all FEELING of my presence and existence. I can't feel time at all (I don't mean a poor conception of time passage, I mean as in time feels like a concept that doesn't exist). I can't even feel my own existence. I can't meditate because there's nothing to ground to- no reality or real life at all. I'm just floating in this oblivion.

It continues to get worse from there. Apathy and anhedonia don't even begin to cover how little I feel. I'm just too disconnected from the moment to be bothered by anything. I literally TRY to feel anxious or depressed just to feel something and nothing happens- there's so much emptiness in my brain I can't even conjure that up. Reflecting on my life prior to this feels like I'm looking at a concept. My brain can not feel or tell what real life is supposed to feel like- it's too big of a concept for me. All I know is that there's another plane of existence out there and I'm not on it.

It gets even worse than that. Have you ever watched a movie where someone gets poisoned and they show their first person perspective? Everything is extremely bright and hazy and distorted and they are obviously dissociated- that's how I see the world but with the MASSIVE feelings of depersonalization on top of it.

I wish I could even cry about how bad this is but I can't conjure up a tear if I put all my effort into it. My brain just can't understand the concept of even crying because I'm sick. These things are the baseline of my disease, they never fluctuate, never relent and never get better. They only get much, much worse if I overexert and then the effects so far have been permenant.

To be honest it is even much worse than what I have described here but I honestly don't have the brain power to put it into words. Not to discount anyone else's suffering but I have never seen anyone describe dissociation from this disease even close to as bad as I have it. I can't absorb any of the stimulus from life; all the wonderful good and bad experiences, the smell of fresh air, the excitement of a new job or seeing your friends, the heartache of a break up etc.. I experience none of these. I can't even feel the difference in sensation between being inside and outside. All of this after only 8 months of this illness so far but with it getting so bad by this point and no signs of relent I have to wonder if I will ever feel reality again.

 

[Beyond]

All I know is that there's another plane of existence out there and I'm not on it.

Yeah at least we know that, since we experienced the prior "blissful" state; before the Fall into the abyss. I am deeply and constantly aware that others that seemingly habitate the same space than me indeed live in Heaven compared with me. And that is good because I know is a state I can recover, to some extent.

 

[Aerose91]

Beyond-

Do you suffer from the dissociation too?

Antares- is your brain still in this state? May I ask how long you've been like this? Any improvement? For me it's been 8 months downhill since the onset

 

[Antares in NYC]

Antares- is your brain still in this state? May I ask how long you've been like this? Any improvement? For me it's been 8 months downhill since the onset

Hi Aerose91,

I'm very sorry to say that I have been in this state for 15 years now. Fifteen friggin' long years of not being myself, but a shadow of who I once was. Keep in mind that for those fifteen years I was undiagnosed and untreated. I was lucky enough to end up in the hands of a NY immunologist specialized in ME/CFS, almost by chance. My tests indeed show consistency with all ME/CFS markers, but wasted 14 years with clueless doctors that led me nowhere, and probably made me even worse.

The level of my brain fog has varied through the years, though. It went like this:

• First year of the ME/CFS onset: awful. Absolutely awful. Basically close to how you described depersonalization, plus all the horrible physical symptoms, and the crushing fatigue. My cognitive functioning was close to 50%.
• Then I entered that remission state that most ME/CFS patients report. For a good 8 years the symptoms lifted a little bit, and went through life with a cognitive functioning of about 70%, some days better than others, but often around that level.
• In 2007 I noticed I started to slip, and then in 2009 things started to spiral down again. The brain fog increased, and I have experienced a lot of scary secondary issues, as a result of my terrifyingly low immune levels. Since 2011, things have definitely taken a darker tone, and these days I function at a 60% of cognitive abilities, with some very, very bad relapses here and there, and still working full time. Not sure how long I'll be able to do it, though.

The thing that keeps me hopeful, Aerose91, is that in the last 15 years I experienced three distinct episodes when my ME/CFS symptoms almost completely lifted away. I posted about those episodes in this thread:

http://forums.phoenixrising.me/inde...almost-completely-vanished.25292/#post-387461

Because of those three little oases of clarity in this 15 year ocean of despair, I keep the hope that not all is lost. There's a way back. Deep inside this messed up body I'm still there, the essence of my own self, the guy I used to be.

Not all is lost.

 

[alex3619]

Here are some of my own observations on these issues.

We often lose our sense of time. Memories are tied into the sense of time, so I think this might impact how we remember.

I think we might have issues with laying down memories, but also recall.

Memory has layers. Usually I recall ideas fine. Words less fine. Memories about things, as in facts, are OK but not great. So I can recall that I went to someone's 40th birthday party, but not details.

Details, including visuals, smells, sounds etc., are part of what is called episodic memory. In this respect I have said before than many long term patients appear to have partial progressive episodic amnesia. We forget stuff, and we forget more and more over time.

My life is like a checklist. Check, I started uni in 1978, 1989 and 2000. Check, I moved to this part of my state in 1978. Specific memories of events ... generally no. So I might recall that I saw a movie at the cinema in 2006, and the name of that movie, but not most details surrounding it. Just flashes. Everything is like that: vague memories, a few limited one second flashes, and the facts of the event.

So I rely on reconstructing memory from what facts i recall, and those little flashes. I use reason more than recall.

We have greatly reduced brain perfusion. We have altered chemistry that can affect laying down memories and recall. We have issues with concentration - brain fog dulls events, makes them less memorable perhaps. Further there are complications in that many of us have comorbid conditions that might have an effect.

If all you recall is the facts, how connected are you going to feel to them.

If you don't have these issues that is very very good. However I have seen this more and more in patients who have been sick over three years, and a high percentage who have been sick over ten years.

Does anyone have experiences that connect to this or are different from this?

 

[Grigor]

I have this too..

Problem for me is i'm so dissociated that living on this planet is too much. Like I see us as animals.
Or aliens.
The whole concept of humanity is too much for me. Beside the extreme ME. The DR makes it really worse.
I'm mostly housebound. But when I do get out of the house it does help a bit. But it's way too intense.
There should be something that helps?

 

[Hip]

There should be something that helps?

For depersonalization, one study found that the drug naloxone is effective:

Effect of naloxone therapy on depersonalization: a pilot study

"In three of 14 patients, depersonalization symptoms disappeared entirely and seven patients showed a marked improvement. The therapeutic effect of naloxone provides evidence for the role of the endogenous opioid system in the pathogenesis of depersonalization."

Naltrexone treats depersonalization:

An open trial of naltrexone in the treatment of depersonalization disorder

"In this prospective open treatment trial, 14 subjects were recruited and treated with naltrexone for 6 weeks to a maximum dose of 100 mg/d (first 7 subjects) or 10 weeks to a maximum dose of 250 mg/d (next 7 subjects). Mean naltrexone dose was 120 mg/d. There was an average 30% reduction of symptoms with treatment, as measured by 3 validated dissociation scales. Three patients were very much improved, and 1 patient was much improved with naltrexone treatment. "

It seems that dysregulation of endogenous opioid (endorphin) systems are suspected of causing depersonalization.

This makes me wonder whether other supplements and drugs might help depersonalization:

D-phenylalanine raises endorphin levels
Germanium sesquioxide boosts endorphins

 

[Grigor]

Are you using any of it yourself ?? Or you don't have any DP??

I tried Naltrexone for a while but started a bit too hardcore with 1,5 . Maybe I should give it a try again.

 

[Hip]

Just for reference, here are some descriptions of the symptoms of derealization and depersonalization:

Derealization (sometimes abbreviated as DR) is an alteration in the perception or experience of the external world so that it seems unreal. Other symptoms include feeling as though one's environment is lacking in spontaneity, emotional coloring and depth. Source: here.

Depersonalization is an anomaly of self-awareness. It consists of a feeling of watching oneself act, while having no control over a situation. Subjects feel they have changed, and the world has become vague, dreamlike, less real, or lacking in significance. It can be a disturbing experience, since many feel that, indeed, they are living in a "dream". Chronic depersonalization refers to depersonalization disorder, which is classified by the DSM-IV as a dissociative disorder. Though degrees of depersonalization and derealization can happen to anyone who is subject to temporary anxiety/stress, chronic depersonalization is more related to individuals who have experienced a severe trauma or prolonged stress/anxiety. Source: here.

Depersonalization disorder (DPD) is a mental disorder in which the sufferer is affected by persistent or recurrent feelings of depersonalization and/or derealization. In the DSM-IV-TR this disorder is classified as a dissociative disorder; in the ICD-10 it is called depersonalization-derealization syndrome and classified as an independent neurotic disorder. Common descriptions of symptoms are: feeling disconnected from one's physicality; feeling as though one is not completely occupying the body; not feeling in control of one's speech or physical movements; feeling detached from one's own thoughts or emotions; a sense of automation, going through the motions of life but not experiencing it or participating in it; loss of conviction with one's identity; feeling a disconnection from one's body; inability to accept one's reflection as one's own; difficulty relating oneself to reality and the environment; feeling as though one is in a dream; and out-of-body experiences. Depersonalization is described as suffering from episodes of surreal experiences. Some of these experiences have been also reminiscent of panic attacks and paroxysmal anxiety. While many people experience brief moments of depersonalization, in others it may last much longer and can become a persistent problem. Source: here.

Derealisation

A feeling that you and/or your surroundings are not real
And/or experience your surroundings through a diffused light, fog or mist.

Depersonalisation
Feeling as if you are "outside of your body"/ 'detached from your body', as though you are either standing alongside, above or behind it

Other dissociative sensations

Sensitivity to light and sound
Tunnel vision
Feeling as if your body has expanded so that it feels larger than normal
Feeling as if your body has shrunk to minute proportions
Stationary objects may appear to move
Driving a car and suddenly realise you don't remember what has happened during all or part of the trip
Listening to someone talk and realise you did not hear part or all of what was said
Sometimes sit staring off into space, and not being aware of the passage of time

It is interesting to note, that although depersonalisation and derealisation symptoms are recognised as two of the most common spontaneous panic attack symptoms, the ability to dissociate is not mentioned in the main panic disorder literature. Nor is it mentioned that many people dissociate first and experience a panic attack in reaction to the dissociation.

There has been speculation amongst psychiatrists who work in the area of dissociation, that people with panic disorder do in fact dissociate first and then panic, but there has been no substantial research in this area. Which is disappointing. We have been researching this for over 10 years and we know from the feedback from clients and from emails that this is the cause of the panic for so many of people.

People who do dissociate have had this ability since childhood, although many people have forgotten they were able to do this as children. This ability can be activated once again as an adult as a result of a major stress and/or not eating or sleeping properly.

Source: here.

 

[Hip]

Are you using any of it yourself ?? Or you don't have any DP??

I tried Naltrexone for a while but started a bit too hardcore with 1,5 . Maybe I should give it a try again.

I don't have derealization and depersonalization myself, so I have not tried this.

As a young kid, though, I did frequently experience the following dissociative symptoms:

Feeling as if your body has expanded so that it feels larger than normal
Feeling as if your body has shrunk to minute proportions

So I have some idea of what dissociative symptoms are like.

Incidentally, this feeling of body size change that I experienced as a child is also called Alice In Wonderland syndrome, or micropsia and macropsia. Some people suspect Lewis Carroll had Alice In Wonderland syndrome, and that this provided the inspiration for his novels.

The most common cause of micropsia and macropsia is medial temporal lobe epilepsy (TLE). TLE is a much milder form of epilepsy, which many people may not realize they have.


Interestingly, depersonalization and derealization can occur in people with temporal lobe epilepsy Herpes family virus infections of the brain have been linked to temporal lobe epilepsy.

It could be that herpes family virus infection of the brain is causing your derealization symptoms. Have you ever tried some antivirals for herpes family viruses, as a possible treatment for your derealization?

 

[Grigor]

Ok yeah I had it as a kid when I was laying in bed and my mom would preach about something I was not supposed to do . She seemed kilometers away, interesting.

I tried Valganciclovir for 3 months but it had no effect. Sadly. I know in Stanford they use it way longer but my GP just gives it to me and then after she doesn't care anymore