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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I finally fixed post-COVID fatigue

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19
I've been taking a few days break from time to time in order to avoid developing tolerance to Modafinil/Heptaminol. Unfortunately, post COVID 19 syndrome is still going strong without any sign of abating.

I know it's too early to tell if I will eventually get better. I thought I'd keep you updated nonetheless.
 
Messages
19
Here's an update:
Due to availability issue, I'm now on Armodafinil instead of Modafinil. It works just the same.

I still have significant post-COVID fatigue. It's not going anywhere. I need 200 mg of Armodafinil to offset the fatigue and brainfog.

It's been 3 months so far. It feels like the fatigue is actually getting worse as time goes by. I'm developing a psychological dependency particularly on Armodafinil. I don't think I can provide for my family if not for this medication.
 

Pyrrhus

Senior Member
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4,172
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U.S., Earth
It's been 3 months so far. It feels like the fatigue is actually getting worse as time goes by. I'm developing a psychological dependency particularly on Armodafinil. I don't think I can provide for my family if not for this medication.

That's horrible! Wishing you the best...

(By the way, if you want to update the title of this discussion thread, you can click on the down arrow at the top-right of the screen, and then select "Edit thread".)
 

YippeeKi YOW !!

Senior Member
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16,075
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Second star to the right ...
I'm developing a psychological dependency particularly on Armodafinil. I don't think I can provide for my family if not for this medication.
It takes whta it takes. That's a problem for another day, right now, ust keeping your head, and your family's, above water comes first.

It's awful that you're going thru this, but know that we're all here for you, for what it's worth., and we're all pulling for you.

God, what I wouldnt give for a magic wand at times like this ....
 
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19
Thanks guys!

My parents, who recovered from COVID as well, also report on-going fatigue that seems to be getting progressively worse.

That's horrible! Wishing you the best...

(By the way, if you want to update the title of this discussion thread, you can click on the down arrow at the top-right of the screen, and then select "Edit thread".)
Well, the post-COVID fatigue is still fixed as in I'm still having symptomatic relief. It's not cured though.
 

Rufous McKinney

Senior Member
Messages
13,489
That said, the comedown from this regimen is worse than usual since the fatigue/brainfog return quite sharply. I find myself bed-ridden right away after it's out of my body.

I tried a small scale experiment with a small dose of Modafinil (50 mgs) and I did not like the feeling. I actually cleaned the kitchen floor, without a care that activity would cause me to crash the next day. So thats not actually helpful.

In terms of "alertness"... its nice to feel more alert, naturally. So sometimes I feel a bit better, a bit more alert.

Modafinil alert was: head ache. Alot of the time, when you have many many symptoms and discomforts, the feeling of more alert isn't very helpful. I don't really want to be alert to- all this.

If these substances create a "come down"...well thats a form of crash. And there are risks that crashing can contribute to- worsening.

Therefore I don' t quite follow how those substances are helping.
 

YippeeKi YOW !!

Senior Member
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16,075
Location
Second star to the right ...
I ended up even worse after a periode of improvements from "using" Modafinil and Methylphenidate
I've been on Modafinil for probably about a decade now.

It hasn't made me any worse.

That said, it hasn't made me any 'better' either.
As the above quotes demonstrate, we're all different, so don't be too alarmed by negative posts.

Unfortunately, the only way you'll know for sure is by trialing it yourself, which is a stone bummer :grumpy::grumpy: ...
 

Abrin

Senior Member
Messages
329
As the above quotes demonstrate, we're all different, so don't be too alarmed by negative posts.

Unfortunately, the only way you'll know for sure is by trialing it yourself, which is a stone bummer :grumpy::grumpy: ...

When it comes to Modafinil it never ceases to amaze me how it can be helpful to some people with ME/CFS and horrid to some people with ME/CFS.

I do really well on Modafinil

My father does horrid on it.

You'd think our genetics would be similar enough that we'd respond the same way to the drug but nope!
 

YippeeKi YOW !!

Senior Member
Messages
16,075
Location
Second star to the right ...
You'd think our genetics would be similar enough that we'd respond the same way to the drug but nope!
The baffling nature of this irritating little miserable stink bug of an illness never ceases to flabbergast me ...


But the difference in your and your dad's responses to Modafinil might indicate that possibly some very small, hard-to-pin-down or even trace or name difference in some genetic code sequence might be to blame.

I agree .... you'd really think that you and your dad would react, if not the same, at least not antipodally differently to the same medication.

But then, I'm thinking of all the organ donors whose parents and siblings didn;t match well enough to donate a kidney, but a near stranger did.

Go know ....

Life's a frequently irritating enigma wrapped in a mystery surrounded by an enigma and locked in a steel safe buried somewhere under the Artic circle's oldest, deepest glacier....
 
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Messages
19
Personally, I find that Methylphenidate makes me very jittery and euphoric followed by a deep crash where I feel very depressed and anxious. If I combine caffeine with Methylphenidate, I feel even more miserable upon crashing.

Modafinil/Armodafinil use don't lead to any crash for me. They don't make me jittery nor euphoric and it's safe to combine them with caffeine without feeling jittery and nervous. They just offset the fatigue and brainfog "cleanly".
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Personally, I find that Methylphenidate makes me very jittery and euphoric followed by a deep crash where I feel very depressed and anxious. If I combine caffeine with Methylphenidate, I feel even more miserable upon crashing.

Modafinil/Armodafinil use don't lead to any crash for me. They don't make me jittery nor euphoric and it's safe to combine them with caffeine without feeling jittery and nervous. They just offset the fatigue and brainfog "cleanly".
This seems like a very dangerous discussion. It's useful to consider out of the ordinary treatments, but one must consider risks involved,, with extreme caution for those with risk of permanent damage or death.

Heptaminol raises blood pressure, causes tachycardia and can trigger atrial fibrillation, which can cause strokes. Your next choice causes Parkinson's. Modanifil can cause mitochondrial damage.

It might be useful to look into the mechanisms which might be leading to the fatigue and solve those problems. They are finding COVID survivors have immune dysregulation, reactivated other viruses, and autoimmunity of different types.

Given that science leaders are noting the overlap between a certain portion of long COVID patients and those with ME/CFS, it might be interesting to look further into the mechanisms being found in the metabolomics studies. It might be worth looking into resources depleted by your illness, oxidative stress, mitochondrial repair and trying things that nurture your body and help it regain more normal function. Maybe antioxidants, mitochondrial nutrients, B vitamins, minerals, amino acids, and phospholipids....

It also might be less risky for some of the people reading this.
 

Booble

Senior Member
Messages
1,465
I've had this fatigue for 2-3 months so far. It is not showing any sign of abating on its own.

For my Dec 2019 virus I had severe debilitating fatigue for 4 months and moderate fatigue for another couple of months and then 6 more months of still not being back to my norm. Basically about a year all together.
 

Abrin

Senior Member
Messages
329
Modanifil can cause mitochondrial damage.

Depending who you ask, it might also have antioxidative and neuroprotective effects.

The thing about Modanifil is that science just isn't sure at this point what it exact mechanism of action is.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You could honestly say that about almost every medication that is out there in the world when it comes to how people with ME/CFS will react to it. (*shrugs*)
True but some are definitely far more dangerous than others. Just ask the people who've been floxed after a couple days of an antibiotic prescribed blithely for a minor infection. Most patients don't think to check about the risks, some of which are permanent, from seemingly benign drugs that other patients rave about. I spoke up here, because these drugs were far from benign.
 
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19
Personally, for me, it's a simple matter. Without Modafinil/Armodafinil, I wouldn't be able to provide for my family. Taking it has become a necessity - as simple as that. Millions of people take it daily without a problem for years.

I couldn't care less for any miniscule damage it might cause.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Personally, for me, it's a simple matter. Without Modafinil/Armodafinil, I wouldn't be able to provide for my family. Taking it has become a necessity - as simple as that. Millions of people take it daily without a problem for years.

I couldn't care less for any miniscule damage it might cause.
You may, once it does. I highly encourage you to look into ways of rebuilding your body that might save you from long-term damage.

As someone who has lasting damage from three different pharmaceuticals, had an adrenal crisis provoked by a fourth, and almost was killed by a fifth one pretty fast, all taken as prescribed, for FDA approved indications, I learned the hard way it's worth it to look at the longer term, particularly when they are being taken off-label with little science to back up their use for a particular indication.
 
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