New symptom, please help!

Sarah94

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My cognition is bad right now, hope this makes sense

So usually I am the "wired" type.

On Friday, when I woke up at beginning of day, it was like a switch had been flipped. I no longer felt wired. HOWEVER my cognition overall felt much poorer than usual. Inability to read more than a sentence at a time for example. Inability to concentrate.
On Saturday, was the same, but worse. Towards the end of Saturday my cognition improved a bit and I also became a bit more wired.

On Sunday (today), when I woke up, it was like the switch had been flipped back - tendency towards feeling wires again, but also my cognitive abilities back to something a bit more normal.
Then, after 7 hours awake, the switch suddenly flipped back! My wiredness mostly disappeared, but also so did most of my cognitive ability. Can't think or read. Cannot at all process people speaking to me.

It feels like, metaphorically, my brain has gone floppy!

Any idea what could be causing this?

I haven't started any new supplements or medications recently, or changed my diet recently.

Usually, PEM or a crash would make me feel more wired and with a lower cognitive ability. It has NEVER EVER made me feel like this before.

It's weird and scary and horrible.

One thing I wondered is because last night I fell asleep before taking my usual dose of melatonin. I wondered if that could be why I felt better this morning - melatonin lowers cortisol, maybe it was low cortisol causing this weird feeling? But I've been taking melatonin every night for months with no problem. And that wouldn't explain why the weird feeling very suddenly came back halfway through today!

Or could it be related to neurotransmitters / other brain chemicals somehow?

Help, anyone?

To clarify, I am not really looking for suggestions of new supplements to try, at least not in this thread, as I find that quite overwhelming. I am really asking if anyone has any idea what may be going on to make this thing happen which is new and very different for me. If I understand what it is then I am more likely to be able to treat it effectively.

Edit: oh, the other possibly relevant thing is that in the last few days, I have been feeling like my stomach is being slow to empty (unusual for me). This feeling started on Thursday I think. It was particularly bad this morning (Sunday morning). Interestingly, the time when I felt like my digestion was starting to move today, was also around the same time as when the switch in my brain flipped to this weird cognitive feeling. Could be a coincidence. I don't know if it could be something to do with energy being redirected from the brain to the digestive system. But then, I'm used to *that* happening on a daily basis - usually digesting food makes me more wired and tired. Not all weird and spaced out.

Edit: to add some more description of what it feels like. It is different to the feeling when taking something that promotes GABA (which I do occasionally). Taking something that promotes GABA feels to me like the wiredness is being covered over with a nice soft cushion. And it also makes you sleepy. This is NOT what this feels like at all. Instead, this feels like somebody has cast a "vanishing spell" upon my wiredness and also upon my cognitive abilities. It feels WORSE than being wired.

Edit: by the way, my heart rate isn't any different to normal.
 
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Alvin2

The good news is patients don't die the bad news..
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I had tried acetyl carnitine, it helps but i had to keep raising the dose, i'm at 3750mg/day now :(
Its expensive.
I find methylfolate (folic acid is the synthetic form and may be harmful long term so i take methyl folate) helps the headaches that got worse in the past few years.
Another member had found DHA to help, i found it did something but not much.

Recently i have been trialing flax oil for the ALA and selenium. Seems to be doing something. I added vitamin E last week, not sure if its helping futher or the flax oil is continuing to improve things on its own.
 

Shoshana

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@Sarah94
I don't know what is happening for you.... I am sorry it is so confusing, though.
I would try to gather info for yourself, by taking detailed notice of what is going on, when you "flip" over, or just before a shift, or just before or when, your cognition goes down.

Such as, but just possibles amongst many others:
Were you everdoing, just before it happens? Were you doing certain movements or types of mental focuses? Were you in an environment that something might have been in the air you were breathing? Such as dust or fumes or mold?

Also, digestive issues DO seem to effect us, overall, to a great degree, so they might be related to what you are experienceing.

Just ideas, for you to consider....i dont know, of course.

Perhaps take a break from the melatonin, or try other experiments, to see what effects you have?


Hello to @Alvin2
It is nice to see you again, here!
 

Wishful

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I wonder if it has to do with the 'abruptly switching states' of temporary remission, without the benefits of being in a full non-ME state. Something in our ME can switch states abruptly.

Shoshana's advice seems good: try to avoid the supplements and medications you regularly take, if you can, to make sure they aren't causing a problem. Even foods can be a problem. For example, if you have coffee every day, how can you know whether it's suddenly become a problem unless you stop having it for a few days?

Likewise, there could be environmental factors you weren't aware of. Different varieties of pollen or spores can pop up at any time, and mostly we aren't aware of them unless they cause a noticeable effect. Produce, even from the same store you always buy from, could carry a new strain of microbe that alters your microbiome. Maybe check for recent insect bites?
 
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@Sarah94
On Friday, when I woke up at beginning of day, it was like a switch had been flipped. I no longer felt wired. HOWEVER my cognition overall felt much poorer than usual. Inability to read more than a sentence at a time for example. Inability to concentrate.
Have you ever had this reaction, or one like it, before?
One thing I wondered is because last night I fell asleep before taking my usual dose of melatonin. I wondered if that could be why I felt better this morning
I don't think melatonin is necessarily at the bottom of this. How long have you been taking melatonin, I assume for sleep issues, and how were you generally speaking befor you startd taking it.


What dose level of melatonin?
Or could it be related to neurotransmitters / other brain chemicals somehow?
This is too general to answer specifically, but your symptoms do seem to be neural in nature, generally speaking. That's a huge area of subject matter.


Your primary neurotransmitters are GABA and Glutamate. GABA calms, Glutamate provides the goad for action on multiple levels and would possibly pertain to the 'wired' part of your issue.
It is different to the feeling when taking something that promotes GABA (which I do occasionally).
What specifically do you use to promote GABA?
Perhaps take a break from the melatonin, or try other experiments, to see what effects you have?
Shoshana's advice seems good: try to avoid the supplements and medications you regularly take
I agree with @Shoshana and @Wishful. Cut everything out for at least a few days, a week or more would be better, start adding back one at a time and take notes on your reactions.
 
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I would suggest keeping a spreadsheet to track fluctuations. Start with the meds & supplements and a few symptoms. Also resting heart rate and activity monitoring (aka "steps") is also great to track with a "fitness" monitor. Possibly sleep times if you have irregular sleep. That way you can try and spot patterns to try and figure out why the change. Otherwise you are trying to figure out something with no data to look over.

e.g. You could use google sheets which is free and accessible from any device with a web browser.
 

Sarah94

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@Sarah94

Have you ever had this reaction, or one like it, before?


No.

I don't think melatonin is necessarily at the bottom of this. How long have you been taking melatonin, I assume for sleep issues, and how were you generally speaking befor you startd taking it.

What dose level of melatonin?


600 mcg per night. Been taking it for a few months. No, I don't think that melatonin is the cause of this new issue. But if I've suddenly developed low cortisol for some reason, then melatonin could make it worse.

This is too general to answer specifically, but your symptoms do seem to be neural in nature, generally speaking. That's a huge area of subject matter.

Your primary neurotransmitters are GABA and Glutamate. GABA calms, Glutamate provides the goad for action on multiple levels and would possibly pertain to the 'wired' part of your issue.

What specifically do you use to promote GABA?
I occasionally take zopiclone. Usually use it on one or two nights a week. Small dose.
 
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@Sarah94
I occasionally take zopiclone. Usually use it on one or two nights a week. Small dose.
Saying that you use zopiclone to ‘promote’ GABA is like saying that you use Valium to ‘promote’ GABA. Zopiclone doesn’t promote GABA. It’s a GABA agonist, in the same way that Valium, diazepam, and any other benzo is, even if it’s called a Z drug. It’s a benzodiazepine, with some barbiturate-type properties.

Zopiclone is a fairly powerful hypnotic that will downregulate your GABA receptors, even with small doses 2x a week. What dose of zopiclone, I’m assuming probably 2.0, 3.75 or 7.5 mgs?

Some side effects of zopiclone seem to match the issues you mentioned in your first post:
  • “My cognition is bad right now"
  • "Cannot at all process people speaking to me."
  • "Inability to read more than a sentence at a time for example."
  • "Inability to concentrate."
  • "I have been feeling like my stomach is being slow to empty (unusual for me)."

Here’s a thumbnail profile of the side effects of zopiclone
  • agitation (more common for seniors)
  • cognitive impairment
  • appetite changes
  • bitter taste in mouth
  • constipation
  • heartburn
  • indigestion
  • stomach upset
  • decreased muscle tone
  • difficulty speaking
  • dizziness
  • dry mouth
  • feeling of heaviness of arms and legs
  • impaired vision
  • tingling, burning, or prickly sensation

My guess is that you’re experiencing classic symptoms of tolerance withdrawal. Your body has adjusted to your current dose and now needs more just to stop the withdrawal symptoms. But do keep in mind that I'm not a medical professional, just a concerned PR member.


DO NOT, UNDER ANY CONDITIONS, STOP THE ZOPICLONE COLD TURKEY. If you decide that all this rings a bell and want to try stopping the zopiclone, be cautious. Hit the Google Machine for some research on tapering these drugs. This has to be tapered slowly. Don’t think that because you only use it 2x a week in low doses that you can’t possibly be addicted, or more accurately, habituated, to this drug.

Tapering will be difficult. You’ll get absolutely NO help from the prescribing Dr on this. To admit that anything they’ve prescribed has caused problems is anathema to Drs. It also can look like a looming complaint that could affect their license.

They’ll tell you that “No one else has reported these problems” ….. “It’s all in your head” ….. “We just need to adjust your dose a little”. This means increasing it, which will temporarily stop the withdrawal, but will lead to further upward adjustments down the road, ad infinitum, and the ultimate withdrawal of your prescription and prescribing Dr.

"Long-term use of sedative-hypnotics for insomnia is discouraged for reasons that include concerns about such potential adverse drug effects as cognitive impairment (anterograde amnesia), daytime sedation, motor incoordination, and increased risk of motor vehicle accidents and falls." And this is just what the drug company and prescribing Drs are willing to admit to in print.
 
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May I ask you why do you counteradvise stopping cold turkey?

As you can see I also started a thread about cognitive decline.

Concerning benzodiazepine use, i am not font of it but my history is (because of huge stress problems, not at all concerning CFS at itself though discrimination because of it during my studies, problems so bad they kept me aroused and awake at night...

- years and years of use stop and start again, or sometimes taking it only one day a week (like from sunday on monday). Approximately 5 years. First zolpidem (stilnoct) until I noticed that I became suicidal ideating not immediately after stopping, but a few days after. Only I did notice that much and much too late (happily no harm has been done but I mean I shouldn't have felt so bad and what is more I thought it was a reality for me that everything was bad instead of seeing it as a side-effect of drugs! If I wasn't this strong it was possible that I killed myself because i had all the drugs for it needed. So this was a huuuuge risk and doctors never warned me about it!!)
- when realising this I switched to lormetezepam, which became my sleep aid during distressing times also for years I am afraid...
- Then I started to use it proactive: before I had to do something and knew i had a a hard day which i wasn't able to go trough by myself because of lack kof energy and sleepiness... so i took it only on random occasions, of course sometimes you have a week with a lot of appointments booked and you take it some longer.
- I always stopped as quickly as i started: cold turkey

I must admit that unfortunately earlier this year i had a very bad period because the very bad history i have (discrimination during studies) seemed to rehearse itself while i was just trying to get everything on order and doing my best to spent all my time awake working:
I started to use my benzo's again and wanted to forget everything and fall asleep immediately because I just couldn't cope nor handle the stress --> of course I had to elevate the dose, while 0.5 mg was enough( actually which i do blame my physician is that they prescribed me 2 mgs per pill as if it was the most logic ever though i am a very thin woman and not a man of 80kgs which I guess they don't give 4 mg pills ...). In the beginning i didn't mind and took the whole pill. Untill i realised 1mg must be enough and afterwards i noticed even 0.5mg did the trick for me..... SO i was waaaaaaaaaaaaaaaaaay overdosing myself with this crap ... and then i asked my doctor for 1mg pills,which they told me were to calm down and not to sleep - but for me it was enough...
But in this period of course overwhelmed by emotions i just did want to knock myself out immediately after touching my matress.I succeeded in it.. but you can imaging dosing was not quiet healthy anymore...
I did so for several weeks (happily when i take a pill the day afterwards ii still feel them and i can sleep on that same pill the night ater...).
Untill a meeting was arranged and the problem discussd and a solution was offered. By that time i was experiencing heavily problems because of the high dose: not getting awake enough by day, feeling drugged, nauseas, not hungry anymore, having equity problems, emotional beyond believe (making a conversation during this meeting gotting extremely out of hand and any emails sent more harming instead of helpful...), ...
and then i decided a hated this pills. I literally felt sick and tired of them.
Despite I just bought another dose (you can imagine i had to buy another dose already when my previous one was still filled 1/4 because i won't have enough for the night...

I did already experience cognitive decline because of taking anticholinergic anti hyperactive blatter pills for which i was going to my md to complain unaware of the official side effects: he thought i read the leaflet and freaked out and eased my worries and told me these pills are generallly used only for elderly, experiencing memory loss and cognitive decline. That's why it is mentioned...
I kept expressing my worries ... but they were ignored. On top of that I also took antiacidantia pills and something against asthma: now seems to have contained all anticholinergic substances!! I already experienced difficulties finding worse or following a conversation... Tough after changing to microbegron i felt improvement was possible.
Though now I feel like cognitive decline worsened a lot (see other topic)....

Is this because I stopped completely cold turkey from a to be honest - huuuuge - dose of benzodiazepines? Or maybe bcs of the use itself? I am so scared not to get my memory and reasoning function back while i have always been looked at as higly intelligent...... it is extremely painful and i am scared where this will head as i am only 33....
 

gbells

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>Any idea what could be causing this?

It's a very common SEIDs symptom, commonly known as brain fog. Probably is a combination of decreased oxygen from lowered blood flow due to arterial inflammation from the underlying abortive viral infections plus energy drain from infected cells with broken mitochondria prolifering. High absorption, time release curcumin will help pause the inflammation but so far there are no available ways proven to permanently kill the viruses. Are you using the spoons technique for energy management? You should. Look into earthing to improve your sleep. Avoid stimulants (caffeine, etc). Eat very healthy and drink enough water. Best.
 

Sarah94

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>Any idea what could be causing this?

It's a very common SEIDs symptom, commonly known as brain fog. Probably is a combination of decreased oxygen from lowered blood flow due to arterial inflammation from the underlying abortive viral infections plus energy drain from infected cells with broken mitochondria prolifering. High absorption, time release curcumin will help pause the inflammation but so far there are no available ways proven to permanently kill the viruses. Are you using the spoons technique for energy management? You should. Look into earthing to improve your sleep. Avoid stimulants (caffeine, etc). Eat very healthy and drink enough water. Best.
What brands of curcumin do you recommend as being "high absorption"? I already take curcumin, but always keen to find a better version. Thanks.
 

gbells

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What brands of curcumin do you recommend as being "high absorption"? I already take curcumin, but always keen to find a better version. Thanks.
I looked this up for you. There are two available, InnovixLabs C3 and Longvida. The C3 has a duration of six hours while the long vida lasts 7.5 hours (half life). So it looks like its twice a day dosing.

I worked up the cost. C3 is $0.57/dose while longvida is $0.60/dose vs $1.64 per dose for longvida so C3 is the winner. Be careful dosing. Too much curcumin has increasing nausea as a side effect. Start low and work up until you notice mild nausea then lower it a little.

https://www.amazon.com/Absorption-C...+time+release&qid=1565811494&s=gateway&sr=8-1

https://pureprescriptions.com/scientific-study-reveals-the-best-curcumin-product/
 
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@Belgiangirl
DO NOT, UNDER ANY CONDITIONS, STOP THE ZOPICLONE COLD TURKEY. If you decide that all this rings a bell and want to try stopping the zopiclone, be cautious. Hit the Google Machine for some research on tapering these drugs. This has to be tapered slowly. Don’t think that because you only use it 2x a week in low doses that you can’t possibly be addicted, or more accurately, habituated, to this drug.
May I ask you why do you counteradvise stopping cold turkey?
Benzos are notoriously hard to withdraw from, even at relatively low doses, which yours were.


Benzos trigger the release of GABAa neurotransmitters, which in turn steadily down regulate syour GABAa receptors. Down regulation means that the GABA neurotransmitters and receptors decide that, since the benzo is doing their job for them, they're no longer needed, and gradually they disappear, leaving you completely at the mercy of you prescription med in order to stay calm and balanced.

But if you stay on a med for any length of time, your body/mind adjusts to it, and you no longer get the same effect from the same dose, meaning that you'll have to increase your dose to overcome what's called tolerance withdrawal. And this need to increase the dosage will continue indefinitely.

When you discontinue it suddenly, you no longer have any way to balance your emotions, brain, or moods, having eliminated, for all practical purposes, your natural GABA/glutamate balance.

The brain goes into something like a nervous breakdown until the critical neurotransmitters can be built back up, which takes, like, forever. Well, not forever, but a looooong time.

If you taper of the benzo in question very very VERY slowly, it gives the brain a chance to catch up with what's happening. The best way to do this is to convert gradually to an equivalent dose of diazepam (Valium's generic and more affordable form), which has a very LONG half life, which helps to protect you from the consequences of sudden withdrawal and makes the interim doses able to be spaced more widely and is less punishing to your neuro system.

Zopiclone has a short half-life, about 5 hours. Half life expresses how long it takes for roughly 50% of a medication to leave your system. Diazepam has a half life of between 24 and 48 hours, depending on how fast your system metabolizes it and what other meds you might be taking that would slow that down or speed it up.
I did so for several weeks (happily when i take a pill the day afterwards ii still feel them and i can sleep on that same pill the night ater...).
You clearly have a fairly sensitive system. This would make withdrawal harder. I assume that the above is referring to Zopiclone, yes?


Tag me at @Yippie etc if you have any more questions or if I can help in any way. Withdrawal is hell.
 
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Thank you for your information! @YippeeKi YOW !!

The drug I was using was not zopiclone (zolpidem here or stilnoct here but I guess it is the same?). I left that because it made me strangely suicidal (in ideation) and emotional like hell the day after I stopped them, while my GP adviced taking 3 in a row and leave them.

So I started using lormetezepam, but always have been doing that intermettently. In the period described above with extreme stress, I was taking up to 5 mgs, it might be more ... to knock myself KO immediately.

As I have always done, I stopped them from one day to another and never touched them since. Also because the hangover and side effects were a bit too much of course after so high dosage. I have been using them intermettently for maybe over a decade. But don't wish to take them anymore since I sleep quiet fine but it was only when two conditions were combined: extremely high emotional stress because of unhappily life events and the need to get sth done the other day so that sleeping was necessary because you needed to function.
I have an almost full box here, but no cravings nothing, feel more like throwing them away than taking them and hope i won't be needing them in the coming decade at least..

So I used them proactively: to avoid fatigue or my body having not enough energy to get trough the day instead of reactively (to sleep). Taking lormetezepam meant for me the certainy to function the necessarry 8 - 10 hours a day...

But I have always been stopping abruptely and acutally never regret it.
Though recently I feel heavily cognitive decline (being not yet 34...) though this may also because of taking anticholinergics for overactive bladder.
 
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@Belgiangirl
Though recently I feel heavily cognitive decline (being not yet 34...) though this may also because of taking anticholinergics for overactive bladder.
Anticholinergics have definitely been connected to cognitive difficulties. Drs like to think that that's only in the elderly, but that defies all logic, not unusual for Drs trying to avoid addressing a problem or being held responsible for their prescription's side effects..

The good news is that it's almost certainly a temporary condition that will clear when you no longer have to take them, or experiment with taking a lower dose. The combo of anticholinergics and benzos will create additive problems, cognitive setbacks definitely being one of them

Everything I wrote above will also apply to lormetezepam, which is also a short-acting benzo hypnotic. Different systems will respond either more or less rapidly to the less than positive effects of benzos, especially when combined with anticholinergics, and combined with anticholinergics, and depending on the antichlinergic you're taking, the two may interact by way of the CYP2C19, I think, which is an enzyme in the liver (there are more than 50 of them, lumped under the term P450) that metabolizes different substances being removed from the body. There are inducers and inhibitors. Inducers cause more rapid metabolizing, inhibitors slow it down, causing a substance to be retained longer in the system, thereby increasing its effects.

Again, please let me know if I can clarify anything or answer any questions, at least those within my grasp.
 

leela

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Have you checked your ammonia levels? High ammonia can cause crazy changes in cognition.
I have that, and it's awful, so here are some hugs no matter what is causing it! :hug::hug::hug: