has anyone completely lost their ability to feel

[PNR2008]

I don't know if this is relevant to this thread but I know it's related or at the opposite end of " not feeling". I feel such sadness that it holds me down and uses up my little reserve of energy.

When I think of all the attempts and failures that this ME experience has caused in my life. All the doctors, meds, exercise, non-exercise, the look on all the doubting faces, friends, family, medical profession, my government, it hits me like a ton of bricks. and just the realization keeps me in bed.

I used to be the advocate, the cheerleader and now I feel if I have to read one more freaking article about what may help or God help me - an abstract, I'll explode.

Yes I know any information is helpful, I know we have to talk and write and donate. I started with anger, now it's sadness and maybe I'll turn in to a flat person just because I can't make a difference in my life or anyone else's. I know good deeds are helpful and needed but when do we see a real change? Is there really a redemption coming?

I guess I'm just worn out. Maybe my brain is protecting me or I'm in shock. Maybe it's better to feel something horrible than to feel nothing. At this point I don't know anymore.

 

[ahmo]

I am truly sorry for how horrible this must be for you. Based on some of the comments I have 2 other possibilities. First I'm linking Dr. Theoharides vid re brain inflammation. His Neuroprotek has been developed to calm down overactive firing in the hypothalamus. But I think most of his references are to the other extreme, hyperactivity. So I don't know if it's relevant. It's been great for me.

The other is the possibility of low dose naltrexone. I'm not sure if it crosses BBB, but some of it's function is about inflammation, balancing the immune system. Again, I've had terrific results from LDN.

Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

Neuroprotek http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c

http://www.lowdosenaltrexone.org/index.htm

https://sites.google.com/site/dudleyslowdosenaltrexonesites/

 

[Aerose91]

@ahmo

Thank you for your suggestions. I was actually on LDN for the first year while all this was happening and it had no effect.

@adreno
the same time I was on LDN I was also on curcumin and Theanine. Again, none of them made any difference.

I dont know how to describe it, it just feels like my health issues are too deeply dug in to be influenced by one or two things. It's like a brick wall- no matter what I throw at this disease It just continues doing its own thing, unabated. However the slightest thing wrong- eat the wrong thing or God forbid I expend some energy- it will knock my brain down another level and that's where I will stay. My brain just doesn't recover at all. I know healing your brain and body are two different entities but this whole disease is on my brain and it just doesn't budge. It's awful.

 

[Hip]

Anhedonia and blunted affect (flattened emotions) are two conditions here that often come together, but are distinct:

In anhedonia, the experience of pleasure from daily activities, and the sense of reward on completing tasks, is weak or absent. People with anhedonia will feel no sense of pleasure in doing things they once found rewarding.

In blunted affect, it is life’s normal emotional responses to situations (love, sadness, compassion, guilt, anger, joy, surprise, etc) that are weak or absent.

So anhedonia is a lack of feeling a sense of pleasure and reward; and blunted affect is lack of emotions.

One treatment that is helpful for anhedonia is very low dose amisulpride.

 

[Aerose91]

Anhedonia and blunted affect (flattened emotions) are two conditions here that often come together, but are distinct:

In anhedonia, the experience of pleasure from daily activities, and the sense of reward on completing tasks, is weak or absent. People with anhedonia will feel no sense of pleasure in doing things they once found rewarding.

In blunted affect, it is life’s normal emotional responses to situations (love, sadness, compassion, guilt, anger, joy, surprise, etc) that are weak or absent.

So anhedonia is a lack of feeling a sense of pleasure and reward; and blunted affect is lack of emotions.

One treatment that is helpful for anhedonia is very low dose amisulpride.

I would say it's both but definitely more "blunted effect" I have desires to do and not do things regardless of if I'm able to or not, however being able to feel anything on a daily basis is much worse.

 

[Gingergrrl]

@Aerose91 I was wondering if your SPECT scan showed damage to the frontal lobe and also if you are able to accurately read what emotions other people are feeling? (I don't mean life-long but since your illness started.)

 

[Aerose91]

@Aerose91 I was wondering if your SPECT scan showed damage to the frontal lobe and also if you are able to accurately read what emotions other people are feeling? (I don't mean life-long but since your illness started.)

Hi @Gingergrrl

No, I don't seem to have trouble interpreting other people's emotions. It feels like my logic is in tact and I know how I'm supposed to act, there are just many things gone.

This is what the report on my SPECT says and I should note- this is a resting scan. I couldn't take the risk of a post exertional scan given the damage that has caused me so far:

This is a good quality baseline scan. The most significant finding is decreased activity in the orbito frontal cortex, temporal lobes, parietal cortex and dorsal pre frontal cortex. There also is decreased activity in the pre frontal pole and occipital lobe. In addition, scalloping is evident. These findings may indicate a history of brain injury.

1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest.

2: Decreased left and right temporal lobe tracer activity seen at rest.

3: Decreased parietal lobe tracer activity seen at rest.

4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right pre frontal cortex pole tracer activity seen at rest.

5: Decreased left and right occipital lobe activity

6: Mild scalloping seen at rest.

The only thing that I could think of that would cause appearance of a brain injury is that I got ME from encephalitis. The doctor who interpreted my test agreed. That's the only thing I can think of as to why this disease is centered in my brain and not my body- that maybe the cells where the initial infection were are the ones damaged the most.

 

[Daffodil]

i havent read this entire thread..just the title and first post, but wanted to say that the brain fog muted all my emotions too. i havent felt much for many yrs. when at my worst, there was crying and profound and intense agony...but it was different than a sadness; it was almost a matter of fact realization that i had to end my life. very weird.

i still have that almost total apathy. i am almost scared of what kind of flooding of emotions might come back if my brain clears...since i have some better days now, i do notice more emotion and interest in things.

i lost most of my sex drive years ago but now, it is TOTALLY gone..like sex is not even a "thing" at all!

 

[Sidereal]

Hi @Gingergrrl

No, I don't seem to have trouble interpreting other people's emotions. It feels like my logic is in tact and I know how I'm supposed to act, there are just many things gone.

This is what the report on my SPECT says and I should note- this is a resting scan. I couldn't take the risk of a post exertional scan given the damage that has caused me so far:

This is a good quality baseline scan. The most significant finding is decreased activity in the orbito frontal cortex, temporal lobes, parietal cortex and dorsal pre frontal cortex. There also is decreased activity in the pre frontal pole and occipital lobe. In addition, scalloping is evident. These findings may indicate a history of brain injury.

1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest.

2: Decreased left and right temporal lobe tracer activity seen at rest.

3: Decreased parietal lobe tracer activity seen at rest.

4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right pre frontal cortex pole tracer activity seen at rest.

5: Decreased left and right occipital lobe activity

6: Mild scalloping seen at rest.

The only thing that I could think of that would cause appearance of a brain injury is that I got ME from encephalitis. The doctor who interpreted my test agreed. That's the only thing I can think of as to why this disease is centered in my brain and not my body- that maybe the cells where the initial infection were are the ones damaged the most.

Do you know what caused your encephalitis?

 

[taniaaust1]

the same time I was on LDN I was also on curcumin and Theanine. Again, none of them made any difference.

I dont know how to describe it, it just feels like my health issues are too deeply dug in to be influenced by one or two things. It's like a brick wall- no matter what I throw at this disease It just continues doing its own thing, unabated. However the slightest thing wrong- eat the wrong thing or God forbid I expend some energy- it will knock my brain down another level and that's where I will stay. My brain just doesn't recover at all. I know healing your brain and body are two different entities but this whole disease is on my brain and it just doesn't budge. It's awful.

Sounds aweful . I hope you find something which helps. My main brain issues are more so bad memory issues.
........

@PNR2008 .. Sad reading your post, this whole thing does get to us after a while. Ive backed way off of my advocating too (except for myself).

 

[Forbin]

I think "affect" refers to the outward display of emotional responses. So, with "blunted affect," you could possibly be experiencing emotions, but you might only be giving limited outward signs that you were experiencing them.

This could be important, as you might look depressed yet not feel depressed.

I could see that happening in ME, as the "blunted affect' could well be nothing more than then distracted appearance of a patient trying to deal with the myriad burdens of the illness (in my case, 24/7 balance problems on top of everything else).

About a year after I got ME, I saw a dermatologist for the first time. Before the exam room door even closed behind him, he said, "You look depressed." I actually laughed out loud at that. He moved on.

 

[Hip]

I would say it's both but definitely more "blunted effect" I have desires to do and not do things regardless of if I'm able to or not, however being able to feel anything on a daily basis is much worse.

I had both anhedonia and blunted affect to a severe degree for many years, though thankfully they have eased off in the last few years.

In terms of hellish misery, anhedonia is far worse that blunted affect. With severe anhedonia, you get intense suicidal ideation all the time, because once your mental life becomes entirely devoid of any sense of reward or pleasure from your actions and activities, it seems that your mind just decides for you that death is the best option.

Blunted affect is not very nice, but it is not of the same order of hellish torture as anhedonia. With blunted affect, you can carry on with things, but you become a sort of dehumanized, because you cannot properly respond to emotional circumstances that mentally healthy people are affected by. For example, if you watch a romantic or melodramatic film on TV, much of the behavior and motivations of the characters in the movie seems a bit alien, because their behavior and motivations are emotion-based, and with blunted affect you cannot properly tune into this all-important human dimension of emotion.

Note that technically, blunted affect means a reduced emotional response, and flat affect is even more severe: it means no emotional response whatsoever.

I think "affect" refers to the outward display of emotional responses. So, with "blunted affect," you could possibly be experiencing emotions, but you might only be giving limited outward signs that you were experiencing them.

There seem to be slightly different definitions for "affect": in some places it is defined as the expression of emotion, but I have also seen it defined as the experience of emotion. In reality, the two go together: if something triggers an emotional response so that you experience emotion, you nearly always will tend to express this emotion too (unless perhaps you are a well-trained poker player).




Through trial and error, I found that the following supplements were able to increase my emotional response:

Treatments for Blunted Affect (Weak Emotional Response):

Myrrh essential oil 12 drops, diluted in 30 ml of baby oil and rubbed onto the skin (where it is absorbed)
Terminalia arjuna herb 7 grams — induces emotions around 5 hours after taking it
He shou wu (Polygonum multiflorum) 10:1 extract 400 mg
Royal jelly 1500 mg
Carnosine 1000 mg
Glutamine 2 heaped teaspoons of power (1 heaped tsp = 6 grams)

The above supplements are listed in order of effectiveness.

I found myrrh essential oil was particularly effective in treating blunted affect. In herbalist circles, myrrh is known to support the emotions. Though it is a bit inconvenient to have to rub this on the skin (although it does smell very nice). Terminalia arjuna in Indian herbalism is also known for its emotional effects.



I sometimes use a cocktail of the above supplements if I want to watch a tear-jerking film with strong emotional content, such as a romantic movie, for example. I find these supplements have a huge effect: rather than sitting in front of the TV and watching the film with cold and clinical indifference as I would normally do, once I have taken these supplements, I find I am easily able to cry in response at any tear-jerking moments in the film. You need to take these supplements around 3 hours before watching a film, as they take a while to kick in (and Terminalia arjuna takes slightly longer to kick in, I find, around 5 hours or so).

Although the emotional effects of these supplements will wear off after around 5 or 6 hours, it is very nice to be able to sit through a film, and for once to be able to feel strong emotion and to get wet eyes. This is very cathartic. Even if you just do this once per month, it has a great unblocking effect on the mind, I find. And it rehumanizes you, albeit for a short while.

 

[Hip]

I should point out that my anhedonia and blunted affect symptoms were triggered by the viral infection I caught (this virus is described on my website here). What's more, this virus caused mild anhedonia and blunted affect in many friends and family members who caught the same virus as me. Though it was only me that also developed full ME/CFS from the virus, in addition to the anhedonia and blunted affect.

 

[Tunguska]

I had all the things, right now enough anhedonia to have almost no interest in posting, but it's kind of secondary. I have some kind of air pocket in my frontal cortex, well that's how it feels. I can never describe these. The worst is having no response to anything.

 

[Hip]

I had all the things, right now enough anhedonia to have almost no interest in posting,

@Tunguska, it may be that you have lack of motivation, rather than anhedonia.

It can be difficult to distinguish the two, but basically lack of motivation means you do not tend to spontaneously initiate into tasks and purposeful activity; whereas anhedonia means that you don’t get the feeling of reward or satisfaction on completion of a task or activity.

So for example, you could still have good motivation with anhedonia; but you just won't feel that nice sense of satisfaction when you've completed the job.

Lack of motivation is due to problems in the motivational circuitry of the brain; whereas anhedonia is due to problems in the reward system of the brain.



I had quite severe lack of motivation (as well as anhedonia) for several years. I was like you, in that I would just sit there and have plenty of things to do, but my brain would remain neutral, doing nothing, rather that engaging in any task. This was not due to brain fog or fatigue; I had enough energy and cognitive power to undertake tasks, but I just found that my brain seemed to refuse to initiate itself into the task.

If you have never experienced severe lack of motivation, it probably sounds really bizarre that your brain could just become largely incapable of starting and engaging in purposeful actively; but this is precisely what happens when you get a dysfunction of your brain's motivational circuitry.

But fortunately I did find some good treatments for my lack of motivation:

Low dose pramipexole, say ½ of a 0.18 mg tablet daily, seemed to work wonders for my low motivation symptoms. This drug has been used to treat low motivation in Parkinson's.

Vitamin B2 (riboflavin) 50 mg, taken two or three times daily, also seemed to significantly boost my motivation.

Within an hour of taking them, vitamin B2 or pramipexole will quickly change me from being apathetic to being focused and task oriented. So vitamin B2 and pramipexole are very useful tools for breaking through any motivational stagnation.

 

[Sherlock]

lack of motivation

IIRC, if you put knockout mice with no dopamine into a cage with a bowl of food, they will starve to death because they won't walk over to the bowl and eat.

 

[Aerose91]

Do you know what caused your encephalitis?

Unfortunately no. I didn't have a spinal tap until many months after the acute encephalitis was over and was already into the ME. During the acute encephalitis, despite me telling everyone something was seriously wrong and I needed to go to a hospital, they just thought I was being a hypochondriac and eventually thought in was turning into a schizophrenic, lol.

 

[Aerose91]

I should point out that my anhedonia and blunted affect symptoms were triggered by the viral infection I caught (this virus is described on my website here). What's more, this virus caused mild anhedonia and blunted affect in many friends and family members who caught the same virus as me. Though it was only me that also developed full ME/CFS from the virus, in addition to the anhedonia and blunted affect.

How did you find out which virus you had? And thanks for the herbal recommendations. I'm going to jump back on curcumin and just take a much higher dose and possibly add in some LDN again too. Also my doctor wants me to take a trial of doxycycline to see if it has any effect because we are speculating Lyme disease.

 

[Hip]

How did you find out which virus you had?

Dr John Chia very kindly read my website, and said that the viral symptoms I listed on it are very typical of enteroviruses. At the time of first writing my site I did not know that much about viruses, and so I listed all the ME/CFS-associated viruses as possible candidates for the virus I caught (enterovirus, EBV, HHV-6, CMV, parvovirus B19). However, Chia said only enterovirus is capable of causing the very specific symptoms I listed on my site.

 

[Aerose91]

I think "affect" refers to the outward display of emotional responses. So, with "blunted affect," you could possibly be experiencing emotions, but you might only be giving limited outward signs that you were experiencing them.

This could be important, as you might look depressed yet not feel depressed.

I could see that happening in ME, as the "blunted affect' could well be nothing more than then distracted appearance of a patient trying to deal with the myriad burdens of the illness (in my case, 24/7 balance problems on top of everything else).

About a year after I got ME, I saw a dermatologist for the first time. Before the exam room door even closed behind him, he said, "You look depressed." I actually laughed out loud at that. He moved on.

The way I describe it is just that my brain is "so far gone" With the massive dissociation, loss of feeling, psychosis, dementia, loss of feeling of time and placement theres just no other way to describe it.

However, I can completely hide it if I want. I can go out in public and be smiley and have conversations and no one would be able to tell anything is wrong at all- which I like. However inside it's just an act. But I don't feel depressed, don't feel happy, don't feel sad because I can't even feel what I'm missing. I have NO CLUE what "normal" is supposed to be in my brain, so I have no clue how far I am from it. I just know I'm not supposed to be like this. At first I could- I could feel how bad my brain was and could feel it slipping further away and it was terrifying. Now, it's honestly gone so far I can't feel how bad it is anymore so I don't have any fear or anxiety over it. Sounds twisted but I guess that's a good thing.