Confusion, cognitive communication difficulties

[Chronically Auds]

I have experienced varying degrees of confusion, loss of memory, and difficulty communicating over the years of FM and ME. It's always there, just some days were better than others. For the past 5 months I have been experiencing a rapid progression of these symptoms. So much that I don't feel like myself anymore. I can't hold conversation, retain thoughts or communicate clearly. I feel like I am always confused. Anyone else experience this?

 

[Mimicry]

Yes. It’s horrible. It feels like I can’t really connect with people since my thoughts are blurry, I don’t remember what I was saying and communicating with people altogether feels too strenuous, not to mention the emotional flattening and anhedonia that prevents feeling any real connection with anyone no matter how ”close” we are. There’s always this invisible brainfoggy barrier between you and other people. Makes you feel super lonely.

 

[Chronically Auds]

I am so sorry that you struggle with this as well @Mimicry It is more than frustrating. Please keep hoping with me that we will find a cause and cure 🙏

I question if this is just severe ME? 🤬 If this is it, I am speechless.

Or does it have anything to do with craniocervical instability? 🤕 I am trying my Aspen collar again 🤞 I hope this relieves most of my symptoms.

Or is this a reaction from the new meds I am taking for Migraines? 🤯 Im ever so slowly decreasing the amount of meds 🤞 this is the cause!

thank you so much for sharing your experience with me. Sending you much 💕 and virtual 🤗, Auds

 

[Mimicry]

Let’s keep hoping!

I don’t know if I have craniocervical instability, but AFAIK brain fog is one of the core symptoms in ME/CFS. Most of us have it, but meds and other conditions can sure as hell make it worse. I’m slowly weaning off of an antidepressant that I’ve been on for 9 years and I’m wondering if it has made my cognitive problems worse. At least it helped with depression, but now that my psychiatrist and I are trying to find out if I actually have bipolar disorder I must wean off the AD since it can make the mania episodes worse.

What migraine meds are you taking @Auds? How long have you been taking them? If you just started them, I would advise that you give them a chance since the side effects may wear off. Are they helping with the migraines?

 

[Chronically Auds]

@Mimicry A month ago I went to the ER and was treated for migraines with a cocktail containing Tramadol/acet among others and I has a relatively mild ADR that was managed with Benedryl. I asked my GP if I could try taking at home since my "migraines" that I've had for 3 years are constant pressure headaches with neck pain (thus I suspect instability) - I be been taking as prescribed and my mental capacity had declined greatly since.

I am also taking Sertraline (Zoloft) for depression (been sick for 15 years get to a person!) My pharmacy is concerned about seratonin syndrome (which I exhibited signs while in ER) and suggested I consider adjusting these two meds to find a happy place. I didn't find it!!!

I have a phone apt with GP on Monday and hopefully she can help me settle things out.

I researched more re how to fit my Aspen cranioervical collar this morning and decided to give it another try. After 9 hours wearing it now, I am clear headed, no fog, no confusion and MUCH less head and neck pain. ,😁

It might be the changes in meds or the collar, I really don't know, but I am so glad to be feeling better at the moment!

Yaaahoooo! 🙏 Auds

 

[Mimicry]

@Chronically Auds it’s great that the collar worked! I’m really happy for you! How have you been feeling today?

I’m on sertraline, too. I used to take 100 mg/day for many years but now I’m on 25 mg after slowly weaning off it for a year or so. I’ve tried duloxetine and bupropion as well but they weren’t as effective as sertraline for me. I seem to be doing fine for now *knocking wood* even though previously my condition has gotten much worse when I tried to lower the dose and I had to go back to 100 mg.

I have noticed that my mood gets worse when I’m upright, either sitting up or standing. It seems to be due to orthostatic intolerance although now I wonder if it’s actually CCI and if I should try some sort of collar, too. It’s definitely a possibility that I have suffered a neck injury at some point in my life since I used to do horseback riding, snowboarding and martial arts before I got this ill and hit my head many, many times!

 

[Mimicry]

Also I have neck pain, too. This weird pressure in the back of my head when I’ve overexerted. I usually have a feverish feeling along with it. I thought it was the brain inflammation since so many pwME describe similar headache but could be CCI as well, I guess.

 

[Rufous McKinney]

Also I have neck pain, too. This weird pressure in the back of my head when I’ve overexerted. I usually have a feverish feeling along with it. I thought it was the brain inflammation since so many pwME describe similar headache but could be CCI as well, I guess.

I wish more research attention was paid to the cognitive issues. We sure spend a load on Alzheimer's research while what we face feels: IGNORED.

Its NOT the same in my humble opinion.....

Short term memory is poor....I just try not to- get all distressed about it as that helps nothing.

Thinking- requires more energy and- energy disappears abruptly. More focus- more intense pondering- leads to abrupt- cessation of thinking any further.

I no longer have the energy to write or read- more than a few sentences.

 

[Chronically Auds]

@Chronically Auds it’s great that the collar worked! I’m really happy for you! How have you been feeling today?

I’m on sertraline, too. I used to take 100 mg/day for many years but now I’m on 25 mg after slowly weaning off it for a year or so. I’ve tried duloxetine and bupropion as well but they weren’t as effective as sertraline for me. I seem to be doing fine for now *knocking wood* even though previously my condition has gotten much worse when I tried to lower the dose and I had to go back to 100 mg.

I have noticed that my mood gets worse when I’m upright, either sitting up or standing. It seems to be due to orthostatic intolerance although now I wonder if it’s actually CCI and if I should try some sort of collar, too. It’s definitely a possibility that I have suffered a neck injury at some point in my life since I used to do horseback riding, snowboarding and martial arts before I got this ill and hit my head many, many times!

It is definitely worth researching. I have found the stories, research and perseverance of @jeff_w and @JenB to be invaluable. I hope you find some answers and stay safe during this difficult time 🙏

 

[Chronically Auds]

I wish more research attention was paid to the cognitive issues. We sure spend a load on Alzheimer's research while what we face feels: IGNORED.

Its NOT the same in my humble opinion.....

Short term memory is poor....I just try not to- get all distressed about it as that helps nothing.

Thinking- requires more energy and- energy disappears abruptly. More focus- more intense pondering- leads to abrupt- cessation of thinking any further.

I no longer have the energy to write or read- more than a few sentences.

I am familiar with so much of what you describe. Yes, being gentle with ourselves is #1 sending much 💕 and virtual 🤗. Keep moving forward and never give up dear one!