Worrying cognitive decline / impairment drug induced reversible?

[Belgiangirl]

Dear

I am female and 34 yo.

My CFSME symptoms which I have from the age of 15-16 (operation, tick byte, EBV, ...) go up and down with especially peaks of course after exertion like trying to work full time. Sth I can't handle for several months wo crashing.

Even typing in english is hard, while 10 years ago I spoke and wrote it fluently.

Bcs of endometriosis I took medication to calm my blatter, which prevented me from sleeping. I had to go up like 8-15 times a night to go to the bathroom. I got oxybutinine from my GP, followed by Toviaz and other meds which helped not completely but calmed it down.
Without noticing at first, it started to get more and more clear to me that I got backwards. I was extremely smart, everyone knew me like that, studies university with high grades and might do a phd - that doesn't tell much today but still it is an indication. I was a walking encyclopedy. The only thing that kept me alive during very harsh periods of fatigue and muscle weakness in which I was bedridden for months untill years (!!) was my never stopping brain. Always busy trying to solve worlds problems and difficult puzzles it gave me so much inspiration, hope, joy, just everything, ... It never stopped and I didn't want it to because it was my first source of joy! Sth that I had always with me and as said it kept going during bad periods.
In reasoning I was always steps before everyone. And I can give numerous other examples.

All the sudden I met with friends and in conversations I couldn't say a meaningful word. After a while I noticed that my interests changed: from science, technology and politics to baking and cooking or knitting. And in my brain it got silent..
I mentioned this a couple times to my GP. We changed medications. But he said it wasn't possible and thought I had read the side effects and freaked out bcs of it so he eased my worries.

Then I met another GP by incidence who started in the office. He gave me other meds bcs he told me indeed this (anticholinergic) meds were known to have cognitive side effects but where only prescribed in elderly patients, in which the onset of dementia or cognitive decline could be expected. So there wasn't much to worry...
He switched me to another type of medication. Guess what? It helped my blatter relax more and gave less irritation so I could sleep better.

Afterswards we discovered a white matter lesion so I went to the neurologist: this seemed stable. So nothing to fear (for at least now) and while the neurologist was very thoughtful my cognitive symptoms were said to be due stress.

I threw the benzos out of my house fearing them to worsen the decline aslo, i only take the betmiga now for the blatter problems but the cognitive impairment did not stop and it didn't get better.
What should I do?
This is so so extremely painful as like I told it was my biggest source of joy and was al my identity. Ironically my other symptoms are relieved because of vitB12 and I guess coïncidence. But cognitively I am a mess... conversations are hard for me to follow when I was thinking everything at the same time and able to oversee, analyse and do everything. A lot of my friends are intellectuals - who noticed me because of my brain. I would normally write a book... help students with dissertations, analyse political situations and everything. Now nothing of that anymore.
It is like my brain is dead or non-functional anymore at least. There is just nothing happening under my skull except for breathing... Texts i have written myself before, contain words I haven't used and didn't even remember anymore, my vocalubary went from XXXL and impressing anyone to similar to a toddler and while I have a master degree I would be surprised that even if I got cured from MECFS I could ever function in this level...

Can someone help me please or has any ideas how to make this improve again?

I would be so grateful for any help! I would do anything to get my brains back ...


Notice while I have an EBV/immunology-decompromised / suspected to be lupus after all since many comorbidities and now positive for ANA type of CFSME I never ever had in this +15 years of disease cognitive symptoms.
I remember it only once when having a severe pneumonia. I never saw my brain always thinking as sth I wanted to stop. I enjoyed it greatly and it made me survive all my bed bound periods.
Apart from this I did have brainfog (sometimes so severe that i could be disoriented in my own room...), generaly periodically, but they would subside and my thinking would become very clear and sharp again...

 

[Wishful]

Apart from this I did have brainfog (sometimes so severe that i could be disoriented in my own room...), generaly periodically, but they would subside and my thinking would become very clear and sharp again...

Those temporary remissions are a very good sign. They mean that something is holding you in this abnormal state, rather than being the result of permanent degradation. It is therefore treatable. I don't know how to find a treatment that works, but at least it's not impossible.

I've had complete but temporary remissions from my ME symptoms: abrupt switches to full function, and then abruptly back to ME again. I don't know how to trigger them intentionally, but at least they showed me that a treatment or cure was possible. I think that if someone figured out the right chemical, I could take a single pill and be fully functional again within an hour. ME seems to switch states that rapidly. Unfortunately, no one yet knows what that chemical is. Researchers are working to figure it out.

Recommendations for treatments for ME are difficult, because we vary so much. What works for one person doesn't work for another, and makes some people even worse. Also, some treatments help for a short time and then stop working. Apigenin seemed to reduce my brainfog slightly, just enough that I continued taking it, but it stopped working after a few months. I don't think anyone else mentioned apigenin working for them. Iodine, or T2 (3-5 diiodothyronine) works for me, one dose every 21 days, but it doesn't seem to work for anyone else. Other people have treatments that work for them, but which don't work for me.

While I don't have any definite suggestions for which treatments you should try, I hope that knowing that returning to full brain function is at least possible will make the waiting for a treatment easier.

 

[valentinelynx]

If anticholinergics worsened your cognitive function, you might possibly find some benefit by increasing your brain's acetylcholine levels. A supplement called Huperzine-A which is a cholinesterase inhibitor that crosses the blood-brain barrier is useful for this. Other cholinesterase inhibitors such as galantamine (available as a prescription drug but also as an herbal supplement) or Aricept (donepezil) which is a prescription drug only, are used for treating cognitive decline in mild Alzheimer's. Wishing you the best of luck, and healing.

 

[62milestogojoe]

Hi
I understand what you are saying. It's a distressing situation.

I’ve used nootropics successfully for 6 years and my ME related cognitive function has improved hugely. I have found Noopept (GVS-111) particularly effective.

 

[Belgiangirl]

Oh thank you very much for your advice!!

I am getting so scared ... To be honest I don't know anymore what causes it. These periods of being very sharp unfortunately are me speaking from when I was around 20-26. I have been sharp afterwards.
But last years the cognitive decline is not deniable anymore.
I reallly start noticing it since the use of anticholinergic medications indeed. First all kinds of pills for hyperactive blatter / peeing all the time at night.
I did tell the doctor shortly afterwards I felt I had more difficulty than usual with finding my words, especially in my mind and not really in real world conversations, making it difficult for me to think.. because we think with words...
On top of that it feels like all the knowledge I built up during my studies and afterwards are inaccessible for me and I live in like a bubble, very far from this. The information should still be there somewhere. (It even is in alzheimers). I just can't retrieve it ...
For very difficult words okay since not using another language means also using it, I can imagine that it also might be because the "use it or lose it" principle and so being worsened by the fact that I got less intellectual input, read less, am not part of academical or political conversations anymore like I used to be. Also don't follow the news anymore which makes big gap in my knowledge...

But because my interest shifted towards "stay-home tasks" I seemed to have lost track about how fast I was losing everything....

Now it got even more scary:
- keep a conversation going is difficult. I used to forget what I was saying all my life. But now I have it like half of the time I am trying to make a point!! I just don't know it anymore and am not able to find it anymore!!
- I am losing also the line of the conversation ...
- I was busy regulating my business affairs: wanting to tell someone how greatly i am insured: forgot the name of the company I am insured with!!! Unable to retrieve the name of the insurance! And also unable to tell which government organisation I registered myself too!!
This is very shocking to me because this is still another part of information that is lost namely personal information which uses another part of memory then were facts and general knowledge are stored!!

I have no idea what is my fb password anymore... it is in my laptop but would I lose this laptop for any reason: it is gone.

I told this to my GP - still I don't think he realises how bad the situation got. He gave me ginkgo biloba.
I know take this for over a week and can't say I noticed much of improvement...
I also take seleno-methionine: not much of improvement either...
Brainfog also keeps teasing me. I am living in a new city and haven't been to the city centre for some months because I was somewhere else: going back to it it doesn't make much sense to me... I found a shoe store and wanted to go back there: never found it ...
If this decline is continuing I can't even live alone anymore, let alone have a proper conversation.

Less than 2 years ago I was writing master or phd dissertations for other people and getting well paid for it! Today upon reading them I am shocked because I cant imagine that I wrote this down... I am not able to do so today.

I am so scared!!
I blame it indeed to the anticholinergics: apparently I was using many meds that all contained them without anyone ever warning me and for 3/4th of a year I went to the doc telling them sth was wrong. They never told me it was bcs of the pills!
Now I am taking mirabegron (betmiga) for these very same problems. A new medicine that is said not to have the memory problems that come with the anticholinegics it is a selective B3 adrenoreceptoragonist - whatever this may mean... (when reading in this forum and what other CVS/ME patients did write and how much time they seem to devote into analysing all medical scientific information and scrutinising all details I thought you were all to obsessed with this, but now I realise: you do this because you still can. I don't, because I can't ... anymore while I used to be able to haver very high scores on IQ tests global reasoning and especially verbal reasoning... now nothing is left of it.

In the same year I had an electrical shock in the bathroom from an appartment i did rent: problems with wires apparently... it went trough my chest and then (??). I did not faint and was able to go to the hospital my own, but was in extreme difficulties. When reading I saw some people noticing this can give cognitive problems.
Also the benzodiazepine use may have decreased everything even more?

I really hope someone or something can help me and has gone trough the same situation.

So unfortunately now I don't have periodes that are better anymore ... and I don't seem able to remember anything anymore for a longer time ... I am soooooooooo scared. This seems to be dementia with rapid cognitive decline.

 

[Belgiangirl]

Those temporary remissions are a very good sign. They mean that something is holding you in this abnormal state, rather than being the result of permanent degradation. It is therefore treatable. I don't know how to find a treatment that works, but at least it's not impossible.

I've had complete but temporary remissions from my ME symptoms: abrupt switches to full function, and then abruptly back to ME again. I don't know how to trigger them intentionally, but at least they showed me that a treatment or cure was possible. I think that if someone figured out the right chemical, I could take a single pill and be fully functional again within an hour. ME seems to switch states that rapidly. Unfortunately, no one yet knows what that chemical is. Researchers are working to figure it out.

Recommendations for treatments for ME are difficult, because we vary so much. What works for one person doesn't work for another, and makes some people even worse. Also, some treatments help for a short time and then stop working. Apigenin seemed to reduce my brainfog slightly, just enough that I continued taking it, but it stopped working after a few months. I don't think anyone else mentioned apigenin working for them. Iodine, or T2 (3-5 diiodothyronine) works for me, one dose every 21 days, but it doesn't seem to work for anyone else. Other people have treatments that work for them, but which don't work for me.

While I don't have any definite suggestions for which treatments you should try, I hope that knowing that returning to full brain function is at least possible will make the waiting for a treatment easier.

Thank you very much for your understanding and support.

As I mentioned unfortunately I didn't see my brain revive in the last almost 2 years, it only seem to go backwards. I must say I have had one period of 10 days that is to my knowledge the best describable as in full remission but it was short ... following upon a baxter I got and in terms of cognitive abilities I wanted to write that it was hard to judge because what i especially did was trying to clean up mess and making appointments that I postponed for months, years, ...
Though thinking of it more deeplly I realise, that most of the things I was doing I did very disorientated, clumsy, almost unaware, fallen apart, scattered...

So indeed it seems that since this vitamin baxter and injection my physical body did improve, but my brain did far from ... by that time I think I already stopped taking the anticholinergic pills.

 

[Wishful]

I think that many (most?) of us here have some level of cognitive problems: memory, logic, or just lacking the mental energy to try to do a cognitive task. Your problems seem quite extreme, and scary.

I reallly start noticing it since the use of anticholinergic medications indeed. First all kinds of pills for hyperactive blatter / peeing all the time at night.

That makes me think that it might not be all due to ME. I think brain-altering drugs are quite scary in their potential to cause problems. Taking 'all kinds of pills' is even scarier, since there may be interactions. Add in ME, which can change the effects of drugs in ways we don't understand. I suggest going off all the drugs, unless some are absolutely essential for staying alive. Work with a doctor on this, since some might need to be tapered off at a certain rate. I'd rather wear diapers or a catheter than mess up my brain with drugs. If going off the drugs doesn't improve your cognitive ability, then you can go back on one for bladder control, but the most important thing is to make sure that those drugs aren't causing any of your cognitive problems. If they did cause the problems, it may take time for the effects to wear off.

Some doctors are just a bit too quick to write prescriptions, which can be harmful, rather than trying to diagnose properly.

 

[Belgiangirl]

They are very scary... and they are indeed much more extreme than the "usual" CFS/ME problems I described.
I feel like a process has started and god only knows where this will ends. It seems that what I know realise about how omnipresent they are is the top of the iceberg... I don't want to be left with an IQ <100 or even less, it means even though i get better, I can never do my job again, nor having Ironically I still succeed to achieve good academical prestations, probably saying a lot about the level of education. Because I won't be able to produce anything now anymore...

So okay to be clear my doctor never ever told me, not even gave a hint or suggested, that these problems were to be expected. I took this medicine to sleep at night indeed bcs otherwise going to the toilet 10 times is the alternative.
Solution before this pills? Taking benzo's to stay asleep even though my blatter wanting to empty (which is related to endometriosis operation).
Also not sth the brain likes .... So I thought this actually would improve my condition dramatically!
It did: sleeping was no problem anymore! But indeed after months I discovered the problem...
I started switching to other pills together with my MD after months and me keeping complaining: it now seemed that all these "switches" were also pills containing anticholinerga!! Which apparently is devil for the reasoning and memory and brain in general!! (Despite that they are prescribe as if it are sweetbreads!!!!)
At the end, only now, i have a pill which seems to be a B3 adrenergoreceptor (mistakes possible) which is quiet new. I felt my situation did improve.
But now I feel - or maybe I just started to notice - that this is not quiet the truth...
I blamed it on bad sleep and lots of stress because I was staying with family temporaliy which was no peaceful situation. Being on my own, sleeping like a baby again without any sleep aids: it seems it doesn't go away... and i do have a strong feeling of brainfog too which i normally only had on my worst days...
On my worst CFS days (which now are suspected to be lupus because this showed up) i would get lost completely in my own room or own neigbourhood... i would also avoid all contact. Maybe now because my muscle weakness improved greatly
I think also the "use it or lose it theory", add with that that i used to do scientific reading and saving anything as if I was a machine while last years i have been laying down, feeling like dying more than be alive ... tough for me this wasn't a nightmare or hell as others described, because I got my joy from all the thinking and reasoning that was going on in my head ...

So I think all this effects made each other stronger but still .. i am closed off from all my cognitive abilities ...
I am going to order the huperzine A straight away because i think a counteracting thing is the best. So wish I had known this before, i would have taken it together (if i even would take the pills, it seems benzodiazepines were not harming my brain that much *?* and they are much wider used!!
Who can imagine that a doctor will prescribe sth with side effects like this?? But even the pharmacists told they never heart of a similar experience!

 

[Belgiangirl]

I ordered the huperzine A and also something i came across being called phosphadylserine. It apparently helps with phospholidids. Mine might be under attack because of auto immunitiy (SLE).

Did some looking up, unfortunately similar to the cumulative anticholinergica I took (and got inside due pesticide exposure because living close to fruit producing plants) some people also mention "dementia" (literally!!) as side effect of the new drug: mirabegron. This drug is an Beta 3 adrenoreceptor agnoist.
Ironically it is adviced just to counterwork the dementia problems with the anticholinergica. I remember doing some research being paranoia about it, reading it wouuld even repair cognitive function being damaged by the anticholinerga....

My question Does someone know also what would be a counteractive against the beta 3 adrenoreceptor agonist?

Thank you very much!!

 

[Wishful]

Who can imagine that a doctor will prescribe sth with side effects like this?? But even the pharmacists told they never heart of a similar experience!

I was surprised too, but it seems all too common for doctors to prescribe drugs that do have harmful side effects, without warning the patient of them. Apparently, doctors do not need to swear to "First, do no harm' which a lot of people seem to believe (I used to believe that was true). Furthermore, ME might change how some drugs work, so some side effects might be a surprise even to the people who ran the drug trials (on people without ME).

What I recommend is that whenever a doctor prescribes a drug for you, first do your own internet research to look for downsides from taking the drug. If you still think it's worth trying, pay attention to any changes that happen. You're the only one who can tell what the drug is doing to you. If it's providing some benefits, try adjusting your dosage and maybe the time of day you take it and whether you take it with a meal. That way you can find the optimum dosage for you. For all their medical school education, doctors really don't know what is the best drug or dosage for you.

My doctor prescribed LDN at the recommended dosage 4.5 mg. By experimenting, I got that down to 2.25 mg as the minimum necessary dosage. I reduced that further by finding that it worked just as well taken every 36 hrs instead of every 24 hrs. Other people here on PR need much lower doses. In another thread you said that you had a similar experience, finding that .5 mg of a drug was just as effective as the prescribed 2 mg. Take the doctor's prescribed dosage as just a guess of what will be optimum for you: a starting point for experimentation.

 

[Centime Tara]

@Belgiangirl I’m so sorry you’re going through this. I too have cognitive problems that are frightening to me. I’m a writer who’s unable to write or even read very well any more. My decline was steady and subtle, not sudden, but it’s obvious, though I can still partially fake it when I’m around people. I have no answers. I just wanted to let you know you have company.

 

[taniaaust1]

sorry to hear about your experiences. I was an intellectual too who had an IQ at only one point below the average that scientists have (or it may have been the same, I cant remember now anyway, it was around scientist level). I've found it extremely hard what having ME has done to my brain and are partly convinced at this point that maybe I have early onset Alzheimers starting to happen. My brain issues caused me to have to drop out of my studies and I'm now struggling with very basic things like just remembering to put my bin out each week and struggle even to do a shopping list by myself.

So you are not alone. I've found that many drugs as a side effect have major bad affects on my brain, one drug left me unable to even pour water into a cup as I kept missing the cup. The only thing which I have found helps my brain some is molybdenum (an essential trace mineral) when I found out I was very low in that (I found that out by hair testing)

 

[Belgiangirl]

@Belgiangirl I’m so sorry you’re going through this. I too have cognitive problems that are frightening to me. I’m a writer who’s unable to write or even read very well any more. My decline was steady and subtle, not sudden, but it’s obvious, though I can still partially fake it when I’m around people. I have no answers. I just wanted to let you know you have company.

Interesting... I was also writing (but more scientific literature and sometimes journalistic articles - content writing or copywriting). Kind of rolled into it, because
Must say I always have been a kind of "confused genius" and more chaotic and unstructured type, making it possible that I would miss appointments or arrive somewhere at wrong hours etc ... but I could make still sense out of my own mess and would be two steps ahead minimum with reasoning, understanding and everything. Now I feel like I am into a waze and don't know what pieces I still know and don't, i am scared of going out and meeting with people or phoning because I don't know what to tell...

As said, the fact that I didn't use all my skills for over years because being bedbound, wouldn't help. Do you lose more or quicker if you are highly intelligent or on top of your game maybe? Or are you quicker aware of it? I don't know, but it is just too much...

I am really scared since I am only 33.... suppose i can stop this by taking the right drugs (as mentioned above): how long may I maybe stop whatever process i have kicked in motion?


Factors in my environment, which was ever changing lately: extremely high pollution of motorway (gasoline, petrol fumes, lead??), tar ... (because they are cleaning the environment), dioxines, mercury probably as anyone, insecticides and pesticides (in high doses). Living together for almost 2 years with a person that suffers from mental deterioration so making sure everything I say or explain sounds very very simple (which was a disaster for me) and avoid to talk most of the time because it will only confuse the person. That person unfortunately also gives me an extreme amount of stress (she is also not recognised as a person with limitation and not receiving proper care) and lives in her own world while insulting me all the time and being negative etc. So she knows how to cook your blood and tries to force you and manipulate you all the time, it is like a child of 5 years old complaining all day into your ears... ...
Unfortunately I lived in a house with humidity problems (mold?) and am not always in the possibility to cook while i know use of preservatives etc in food do harm me...

But I think it went kind of more gradual that I seemed to lose certain abilities, but the anticholinergic drugs made it all the sudden very profound because i was literally searching for all my words...

Last years I also changed my breakfast to more oats and cow milk, because it is always stated to be so healthy. Just having finished that and wakening quiet "clear" I realise after the consumption of it I feel like i am in my mist again like even raving and feel like dull ++++ ...

I also feel that when I realise something is gone I should think, think and think... and not look it up. Just think and try to retrieve it ... (also instead of panicking). (Problem is what do you do in conversations while you obviously don't get that kind of time :-S) hopefully my brain will get more used to the retrieving and get more contact with the parts of my brain were everything is saved, so this path will be paved and get more easily / automatically used ...
So i still have some hope, because indeed when I "look hard" things come back.

 

[Belgiangirl]

sorry to hear about your experiences. I was an intellectual too who had an IQ at only one point below the average that scientists have (or it may have been the same, I cant remember now anyway, it was around scientist level). I've found it extremely hard what having ME has done to my brain and are partly convinced at this point that maybe I have early onset Alzheimers starting to happen. My brain issues caused me to have to drop out of my studies and I'm now struggling with very basic things like just remembering to put my bin out each week and struggle even to do a shopping list by myself.

So you are not alone. I've found that many drugs as a side effect have major bad affects on my brain, one drug left me unable to even pour water into a cup as I kept missing the cup. The only thing which I have found helps my brain some is molybdenum (an essential trace mineral) when I found out I was very low in that (I found that out by hair testing)

Wow it seems we all have shocking stories. i was afraid of this...
Must add though that I had indeed CFS ME for years (since I was 15-16) but all of a sudden, long after I stopped my scrutinisation of health problems, it turns out that I have lupus. Probably also already from whatever age.
Though I think the symptoms might be very similar and esp the extreme fatigue is.

Our intelligence has been around the same level than I think, I had the same. Happily studies are not a problem for me and strange enough I still can get pretty high grades. But after that ... So there is still something left of it, it is just not automatic anymore and especially when reasoning needs to happen: my brain goes silent.... just silent... nothing happens. Also my thought "experiments" like just stopped... :-/ I don't wake up anymore having the greatest ideas in philosophy, politics, climatology, ... and i don't know what...
When it normally reasoned like a high speed train and i always had top scores on any test (making it possible for me to be hired for any job where even while doing it they were still astonished from my analytical / scientific skills. :-/


I am also thinking of convincing maybe my doctor of the testing of heavy metal poisoning (i have lived in an area which had this problem and that i live now very close to a high motorway won't help as far as I can smell ...).

What I do realise is that I always had to quit my job because the fatigue got into extreme exhaustion. During this phases things were very bad also brainwise: like finding your empty mug in the fridge and totally not aware what you have done or where you just put the keys or whatever if anyone asked... From this extreme periods, i did recover... also during my studies i had this extreme periods of disorientation and like no short term memory anymore...
Though these always went hand in hand with me being physically exhausted. I should kiss my both hands for it, but at the moment I am not bedridden or unable to move (though i feel very weak and faint).
This is quiet okay, to neurologically I can't say that ...

Wish you alll the best and keep us posted please!! (For me seleno-methionine used to help a great deal).

 

[Belgiangirl]

I was surprised too, but it seems all too common for doctors to prescribe drugs that do have harmful side effects, without warning the patient of them. Apparently, doctors do not need to swear to "First, do no harm' which a lot of people seem to believe (I used to believe that was true). Furthermore, ME might change how some drugs work, so some side effects might be a surprise even to the people who ran the drug trials (on people without ME).

What I recommend is that whenever a doctor prescribes a drug for you, first do your own internet research to look for downsides from taking the drug. If you still think it's worth trying, pay attention to any changes that happen. You're the only one who can tell what the drug is doing to you. If it's providing some benefits, try adjusting your dosage and maybe the time of day you take it and whether you take it with a meal. That way you can find the optimum dosage for you. For all their medical school education, doctors really don't know what is the best drug or dosage for you.

My doctor prescribed LDN at the recommended dosage 4.5 mg. By experimenting, I got that down to 2.25 mg as the minimum necessary dosage. I reduced that further by finding that it worked just as well taken every 36 hrs instead of every 24 hrs. Other people here on PR need much lower doses. In another thread you said that you had a similar experience, finding that .5 mg of a drug was just as effective as the prescribed 2 mg. Take the doctor's prescribed dosage as just a guess of what will be optimum for you: a starting point for experimentation.

I have never been this suspicious. Well in my hypochondriacilly times I was, but there comes a point when you are to exhausted and believe in people just doing their work...

Seems that this medicines I took were not prescribed often in young adults like me, but in elderley postmenopausal women that are prone to cognitive decline either way. This was the explanation I got at least...
Though as said I realise now that at the same moment (from different doctors) I got anticholinergic drugs - a word i did not know untill it was too late - and exposed to lots and lots of anticholinergic pesticides (by living between plants). Though I had cognitive decline before obviously (bcs of using or losing it i think and also because of just being physically exhausted, but this indeed "repaired" itself... but this is different and indeed it was sudden. I was quiet quick to pull the alarm bell but as said my MD didn't believe it was possible.
Even in the pharmacy they were completely shocked and never heart this before.

For the betmiga / mirabegron i did my research, in the pubmed and the like, it said that it would even countereffect the effects of anticholinergic drugs so improve cognition! That was for me an argument to take them. Now i just quit (but this betmiga I take halfs while I am supposed to take a complete one so imagine...) let's hope i won't need to go to toilet 10x a night bcs it is the only drug which worked for me and improved my qol greatly, and when i will need to go to toilet that much my cognition is also screwed. That always used to be the argument of the doctors: your lack of sleep (bcs peeing all night) will have impaired your cognition too.
And benzos - to make me sleep even though the toilet visits - didn't help either of course.

Sometimes you need to chose between pests or the colera. But for now i just don't know it anymore... Hope I find a doctor that can help me - and the courage to look for one!

 

[Belgiangirl]

@62milestogojoe Thank you!! This noopept seems to be very interesting! Do you maybe know where I can find the specific one you mention? I have been looking but don't seem to find a shop selling this type :-S (I am from Belgium / Europe).

Thank you very much!!

 

[Wishful]

Last years I also changed my breakfast to more oats and cow milk, because it is always stated to be so healthy.

There's a very critical hidden factor in that belief: 'healthy for many people, but not all people'. It's not hard to find people that react badly to oats or cow milk. Likewise, lots of treatments (drugs, supplements, etc) are very helpful for some people, ineffective for some people, and harmful for some people. There may not be anything that is guaranteed to be healthy for everyone. As with anything you try, pay attention to whether it is helping or making you feel worse. If you try several new things at once, and find that you feel better or worse, try each thing separately to figure out which component is causing the effect.

let's hope i won't need to go to toilet 10x a night

I have to get up frequently to pee too, every two hours or so. That's not purely the result of ME, since it didn't occur in the early years. What I've noticed recently is that drinking extra water during the day and before going to bed actually reduces the number of times I have to get up. I'm guessing that there are sensors in my bladder that are reacting to the concentration of some water-soluble waste product, and dilution reduces that. You may have a completely different cause, but you might give drinking extra water a try, in case it does help. Maybe it would also flush out more of those harmful pharmaceuticals you've taken.

 

[splusholia]

Dear

I am female and 34 yo.

My CFSME symptoms which I have from the age of 15-16 (operation, tick byte, EBV, ...) go up and down with especially peaks of course after exertion like trying to work full time. Sth I can't handle for several months wo crashing.

Even typing in english is hard, while 10 years ago I spoke and wrote it fluently.

Bcs of endometriosis I took medication to calm my blatter, which prevented me from sleeping. I had to go up like 8-15 times a night to go to the bathroom. I got oxybutinine from my GP, followed by Toviaz and other meds which helped not completely but calmed it down.
Without noticing at first, it started to get more and more clear to me that I got backwards. I was extremely smart, everyone knew me like that, studies university with high grades and might do a phd - that doesn't tell much today but still it is an indication. I was a walking encyclopedy. The only thing that kept me alive during very harsh periods of fatigue and muscle weakness in which I was bedridden for months untill years (!!) was my never stopping brain. Always busy trying to solve worlds problems and difficult puzzles it gave me so much inspiration, hope, joy, just everything, ... It never stopped and I didn't want it to because it was my first source of joy! Sth that I had always with me and as said it kept going during bad periods.
In reasoning I was always steps before everyone. And I can give numerous other examples.

All the sudden I met with friends and in conversations I couldn't say a meaningful word. After a while I noticed that my interests changed: from science, technology and politics to baking and cooking or knitting. And in my brain it got silent..
I mentioned this a couple times to my GP. We changed medications. But he said it wasn't possible and thought I had read the side effects and freaked out bcs of it so he eased my worries.

Then I met another GP by incidence who started in the office. He gave me other meds bcs he told me indeed this (anticholinergic) meds were known to have cognitive side effects but where only prescribed in elderly patients, in which the onset of dementia or cognitive decline could be expected. So there wasn't much to worry...
He switched me to another type of medication. Guess what? It helped my blatter relax more and gave less irritation so I could sleep better.

Afterswards we discovered a white matter lesion so I went to the neurologist: this seemed stable. So nothing to fear (for at least now) and while the neurologist was very thoughtful my cognitive symptoms were said to be due stress.

I threw the benzos out of my house fearing them to worsen the decline aslo, i only take the betmiga now for the blatter problems but the cognitive impairment did not stop and it didn't get better.
What should I do?
This is so so extremely painful as like I told it was my biggest source of joy and was al my identity. Ironically my other symptoms are relieved because of vitB12 and I guess coïncidence. But cognitively I am a mess... conversations are hard for me to follow when I was thinking everything at the same time and able to oversee, analyse and do everything. A lot of my friends are intellectuals - who noticed me because of my brain. I would normally write a book... help students with dissertations, analyse political situations and everything. Now nothing of that anymore.
It is like my brain is dead or non-functional anymore at least. There is just nothing happening under my skull except for breathing... Texts i have written myself before, contain words I haven't used and didn't even remember anymore, my vocalubary went from XXXL and impressing anyone to similar to a toddler and while I have a master degree I would be surprised that even if I got cured from MECFS I could ever function in this level...

Can someone help me please or has any ideas how to make this improve again?

I would be so grateful for any help! I would do anything to get my brains back ...


Notice while I have an EBV/immunology-decompromised / suspected to be lupus after all since many comorbidities and now positive for ANA type of CFSME I never ever had in this +15 years of disease cognitive symptoms.
I remember it only once when having a severe pneumonia. I never saw my brain always thinking as sth I wanted to stop. I enjoyed it greatly and it made me survive all my bed bound periods.
Apart from this I did have brainfog (sometimes so severe that i could be disoriented in my own room...), generaly periodically, but they would subside and my thinking would become very clear and sharp again...

There are some similarities with my story. I also had a very high IQ. I have two first class degrees. I was a writer and was quick-witted, and known for being intelligent. I was taking an anticholinergic drug shortly before I became ill with severe ME.

Just before I became ill my brain went rapidly downhill. It felt deadened. I also noticed that I couldn’t laugh or find things funny. I couldn’t make conversation and it was hard for me to engage with my usual interests. Then when I became ill it went downhill even further. I lost the ability to form sentences and complete simple tasks because my executive function was so poor. I couldn’t read or write.

When I was strong enough to research (after about four years of near paralysis), I did the Braverman Personality Type Assessment and discovered I was acetylcholine dominant. I decided that I seemed to have symptoms of acetylcholine deficiency, and to see what would happen if I tried to increase this neurotransmitter.

I took: choline and inositol, phosphatidylcholine, and various supporting nutrients, including a multivitamin and fish oil.

Now, I’m not recovered... but, put it this way, I’m reading War and Peace and my brain is loving every minute of it. My brain gets very fatigued sometimes, but overall it seems to be improving. I really needed choline. I can provide more details if it helps, but just posting this quickly as it’s getting late and I need to rest!

 

[Belgiangirl]

I recognise a lot in your story. It seemed that my intelligence was weakening by the minute, but because my interests seems to change: baking, gardening, cleaning the house and stuff (of course not that we have the energy to make all our plans reality) I didn't notice the decline was so extreme.


Though I did notice especially during conversations and writing - something I did fluently and got paid for as someone else here since my verbal skills were impressive - that I couldn't find the words anymore or had difficulty construing a sentence. Normally my brain is always thinking, my fingers have difficulty following to type it - making me also type extremely fast, always without any mistake in spelling or grammar, but now: nothing happened anymore... Now even writing this post I am re-writing and editing it all the time, because I make mistake or don't even how to spell out the most easy words...

As mentioned before I told this to my GP many times, though they would ignore it and blame or my sleeping troubles or my fatigue...

I stopped all benzo use, all acetylcholines, and started taking ginseng thanks to that same GPs. I noticed some clear improvements, but of course the gap from were I have been was still huge. So I ordered huperzine A and phospatidylserine - which I had a very harsh time learning this words by heart and I don't even succeed in it today... - I took huperzine A in the morning and noticed a small headache. In the evening I took phosphatidylserine. I had a HUGE headache in the evening and night beyond belief...

Didn't go to the ER or sth bcs I went there in the same period to much bcs of lung problems (still having no clue what is their etiology right now) and what could I tell them?
Afterwards I noticed an extrééme decline .... don't dare to take the pills again without medical advice... only question is who to go to?


still having amazingly difficulties finding words, I feel it is almost as worse as on the most extreme moments.... it is very depressing. I can't remember "new" words (which I have known once), I can't retrieve them, I try to think but nothing is happening in my brain, why I always was philosophing, thinking about society problems, how to solve them, politics, economics, sociology, psychology, ... now I am like numb... not even aware of anything and not even following the news anymore - because I know i can't place it, nor process it anymore, and will forget it. So it feels like even when I look for verbal input (bcs I have lived with my mother for some time who is verbally very weak and probably is IQ-wise suffering from retardation - probably has always done so ) so I have to avoid using difficult, let alone academic, words.

But all the words I was juggling with, I was playing with numbers using statistics, I was looking up information and processed it immediately in a text, in 2 weeks I could write an academic dissertation for master students which they would get 16/20 for at least for almost any subject. Now I can't even use google appropriately anymore, I just can't find the words...

It is scary, worisome and shocking. I hope I will improve.


I am confirmed ANA positive, because all symptoms most probable candidate is lupus and on plaquenil now and montelukast for the lung problems, the thing is I am afraid... because even if I will find a doctor who wants to work out things, test my cognitive function and help me to find solutions, it is very probably that I will be sitting there, nothing wil happen in my head, and I will just ben completely numbed out and don't say anything useful, making it impossible to help me ... (or think I can't be helped anymore).

 

[Wishful]

Now even writing this post I am re-writing and editing it all the time, because I make mistake or don't even how to spell out the most easy words...

I'm grateful for that automatic red underlining of misspelled words too. I have forgotten the spelling of some words, simply through lack of use, but my fingers keep mixing up the letters for some words. I frequently see 'soemtign' with that red line beneath it. Likewise, I have to go back and correct all those instances of 'teh'. I'm not sure whether it's ME, age, or something else. Oh well, at least we don't have to dab white-out on our screens.