Limited consciousness - unchanging cognitive symptoms

[Ansilde]

Hi everyone, hope you're doing well. I'm looking for a bit of advice about treatment re cognitive dysfunction.

I had a slow onset of ME, and cognitive symptoms were some of the earliest and worst. A couple of years after getting sick my ME became severe and, along with other cognitive symptoms (not recognising family, what objects were, etc), I started having periods of about a week where I'd suddenly feel far less conscious. It's like being on the very edge of passing out. Everything feels so, so far away, like my mind is about to shut down completely. That symptom would disappear as suddenly as it started, like it was just switched off one day, but it kept happening on and off and eventually stayed that way - for five or six years now.

I feel like I've deteriorated cognitively in other ways during that time. Taking in information (including sound, colours, etc) feels unbearable now. Trying to hold conversations is awful. Even while I'm lying resting with light and sounds blocked out, it's not just endless confusion, fractured thoughts and memory loss; it feels like my brain is ripping apart in a way I can't even describe. Like the limited consciousness, that feeling rarely changes, along with other new symptoms from the time my ME was severe. Tiny discomforts feel magnified hundreds of times in my mind, so I can never distract myself from them and my thoughts are even more confused. Higher pitched sounds are painful and more difficult for my brain to process, and techniques like meditation to improve my state of mind are completely ineffective now.

I had sleep problems for years before I got sick, but much more so since, and my insomnia has gradually worsened in the last few years along with the cognitive dysfunction.

Cognitively I can handle things (such as conversation) for far longer, but it's like my baseline has dropped dramatically from where I was even at my most severe. Rest doesn't seem to help me cognitively, and more often than not it doesn't seem to affect my other symptoms anymore either. I just feel like I'm dying, whether I'm overexerting myself or I've been resting several hours.

It used to feel like my brain had been damaged, but now it feels much more like it's actively being damaged, bizarre as that sounds. Cognitively I've lost so much it's like there are only shreds of my brain left at all. It feels close to complete emptiness.

I've been looking into private clinics for ME treatment, but with the newer cognitive symptoms that hardly change and seem unrelated to my energy levels, I'm not sure it'll have much effect on them. Even when I was far better physically, it felt like my cognitive symptoms (which were fewer and milder at the time) had destroyed so much of my life. A lot of treatments seem to focus on managing energy, which I'm predicting would only get me so far.

Even when I can talk for hours, everything is on autopilot and it doesn't feel like I'm voicing my own thoughts at all. It's like my brain is just reaching for anything it can find to keep going until I'm alone again. I can barely maintain the relationships I have, let alone make any new ones, and I'm not able to do any of the hobbies I used to. My cognitive symptoms feel completely disabling now. I feel like to improve them I need to focus on them separately, but I don't really know where to start.

I've seen two neurologists, one of whom I had a full physical assessment with. He arranged an MRI scan, and they said there were no signs that there was or had been any swelling in the brain. He recommended CBT and GET (from the NICE guidelines). I saw one recently about insomnia, but he insisted I should be seeing an ME clinic about that as well as any cognitive issues (which I can't currently do).

Do you think it's worth trying to find treatment specifically to improve cognition? And do you think it would be worth trying to access more testing privately to shed light on what's causing my symptoms?

If you have similar symptoms and/or tried anything that helped with severe cognitive symptoms, I'd love to hear from you too.

 

[Wishful]

And do you think it would be worth trying to access more testing privately to shed light on what's causing my symptoms?

The problem is that no one knows what is malfunctioning in ME. It may be a very subtle change in biochemistry or the number of micropores in cell membranes or some other abnormality that the doctors lack the tools to test for. I think the most likely outcome, after 'Can't find anything wrong' is 'There seems to be some minor abnormalities, but not in a pattern I'm familiar with, so I can't help you'. My opinion is no, more testing probably won't be useful.

Do you think it's worth trying to find treatment specifically to improve cognition?

I think it's very possible to find a treatment that improves your cognition ... by accident. A particular chemical in some exotic fruit or mushroom--or artificial foodstuff--might be just the right molecule to fix the problem. Trying to find a treatment that is theoretically supposed to improve cognition (in non-ME people) is, in my opinion again, unlikely to be any more successful than trying things at random.

As an example, this winter I became very sensitive to proline (very common amino acid); it increased my brainfog. However, I accidentally discovered that something in beef or lamb (seems to be in the fat) counteracts that. I'm still trying to figure out what it is, and I'm not even sure that it's continuing to work (maybe it depends on the particular animal).

I recommend trying whatever herbs and spices you have on hand; one of them might help. Also, try a diet devoid of anything that might be worsening your problem. I found cornstarch pancakes to be safe (it's just sugar molecules linked together) yet far more satiating than table sugar. If your cognition improves after a few days of that, you can try to figure out what in your normal diet is causing problems.

 

[bensmith]

Im very sorry and have the same issues, but am just starting so not as severe yet. But am heading there it feels. I try and rest but like you said it doesn’t seem to matter. agsin very sorry feiendZ

It’s strange you can talk for hours. I am sort of the same
If i am doing something its “better” maybe? Hard tomexplain. But always getting worse so maybe not dunno.

It’s like feel blurry.

 

[Ansilde]

Im very sorry and have the same issues, but am just starting so not as severe yet. But am heading there it feels. I try and rest but like you said it doesn’t seem to matter. agsin very sorry feiendZ

It’s strange you can talk for hours. I am sort of the same
If i am doing something its “better” maybe? Hard tomexplain. But always getting worse so maybe not dunno.

It’s like feel blurry.

So sorry to hear you're experiencing similar problems. It is strange. Now I'm getting less able there's less of a difference, but in the past I'd feel a lot worse when I went to rest and didn't have anything distracting me from my symptoms.

I wish I had something more helpful to say, but for what it's worth I really hope things stop getting worse for you. Soon, hopefully.

 

[Ansilde]

The problem is that no one knows what is malfunctioning in ME. It may be a very subtle change in biochemistry or the number of micropores in cell membranes or some other abnormality that the doctors lack the tools to test for. I think the most likely outcome, after 'Can't find anything wrong' is 'There seems to be some minor abnormalities, but not in a pattern I'm familiar with, so I can't help you'. My opinion is no, more testing probably won't be useful.



I think it's very possible to find a treatment that improves your cognition ... by accident. A particular chemical in some exotic fruit or mushroom--or artificial foodstuff--might be just the right molecule to fix the problem. Trying to find a treatment that is theoretically supposed to improve cognition (in non-ME people) is, in my opinion again, unlikely to be any more successful than trying things at random.

As an example, this winter I became very sensitive to proline (very common amino acid); it increased my brainfog. However, I accidentally discovered that something in beef or lamb (seems to be in the fat) counteracts that. I'm still trying to figure out what it is, and I'm not even sure that it's continuing to work (maybe it depends on the particular animal).

I recommend trying whatever herbs and spices you have on hand; one of them might help. Also, try a diet devoid of anything that might be worsening your problem. I found cornstarch pancakes to be safe (it's just sugar molecules linked together) yet far more satiating than table sugar. If your cognition improves after a few days of that, you can try to figure out what in your normal diet is causing problems.

Thank you so much, I really appreciate you taking the time to share your thoughts. It's given me a lot to think about, and I'll try to follow your advice and see what I can learn from that.

 

[Zebra]

To

Do you think it's worth trying to find treatment specifically to improve cognition? And do you think it would be worth trying to access more testing privately to shed light on what's causin my symptoms?

Yes x 2!

I don't know what you may, or may not, have access to in the UK.

I'm in the U.S., and after persistently complaining about my cognitive deficits for at least a year, I was finally referred to a Neuro-Pyschologist for evaluation and testing. This consisted of a one hour appt followed by two days of neuro-psychological testing.

In my case, there was satisfaction in having my newfound cognitive impairment recognized and validated. Meaning, it was no longer just a symptom I was complaining about, but now objective medical evidence that was part of my medical record.

In some cases, the results of this testing can identify the areaa of the brain affected and lead to a more targeted work up and even diagnosis.

In my case, the neuro-psychologist felt my level of impairment was similar to an MS patient, and as I did not meet the diagnostic criteria for MS at that time, unfortunately my testing did not lead to any breakthroughs in diagnosis or treatment.

However, as stated above, having objective medical evidence of my newfound cognitive impairment has been helpful to me when presenting my case to myriad doctors.

Hope this is helpful to you!

 

[hapl808]

What was the testing and 'objective' evidence? I've been complaining of cognitive impairment for over a decade. It's worsened in recent years. I can follow a conversation, but it takes a huge effort that can be almost physically painful if I have to try to do it for too long. It also always leads to a PEM crash. What's involved in 'two days of neuro-psychological testing'? I can't imagine doing anything for two days other than lying in bed - the one hour doctor appointments usually take me a week or two to recover from.

I suppose some objective evidence especially if it pinpoints an area would be nice, but I've never heard of that before. Not an area I'm familiar with, though. Although again seems of limited use if it didn't lead to significant changes in diagnosis or more importantly treatment?

 

[Pyrrhus]

I'm in the U.S., and after persistently complaining about my cognitive deficits for at least a year, I was finally referred to a Neuro-Pyschologist for evaluation and testing. This consisted of a one hour appt followed by two days of neuro-psychological testing.

In my case, there was satisfaction in having my newfound cognitive impairment recognized and validated. Meaning, it was no longer just a symptom I was complaining about, but now objective medical evidence that was part of my medical record.

That's awesome that neuropsychological testing worked for you to document your cognitive dysfunction!

For a lot of people, neuropsychological testing can not find any cognitive problem, even when there is one. A lot of it may depend upon the psychologist who is performing the testing, and their subjective perceptions of your performance.

Then there is the problem that the results of neuropsychological testing should ideally be compared to results of testing in the same patient from before they became sick, in order to compare the testing results to the patient's baseline performance. (But, obviously, no one does neuropsychological testing when they're healthy!)

 

[Ansilde]

In my case, the neuro-psychologist felt my level of impairment was similar to an MS patient, and as I did not meet the diagnostic criteria for MS at that time, unfortunately my testing did not lead to any breakthroughs in diagnosis or treatment.

However, as stated above, having objective medical evidence of my newfound cognitive impairment has been helpful to me when presenting my case to myriad doctors.

Thanks, it's great to hear someone else's experience! I haven't come across the type of testing you've had before. It's too bad it didn't lead to any breakthroughs in treatment in your case, but I can appreciate how helpful the validation must be.