I finally fixed post-COVID fatigue

[Abrin]

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.

While I completely understand and sympathize with your reasoning, I am not using Modafinil in an off-label way since I am using it to deal with daytime sleepiness (aka brain fog.)

I do have to admit I am completely confused to why you believe that Modafinil is dangerous? Is there some sort of research that I have missed? As @D.Rabbie pointed out it is a drug that people have been taking for decades now without any sort of issues.

 

[Learner1]

While I completely understand and sympathize with your reasoning, I am not using Modafinil in an off-label way since I am using it to deal with daytime sleepiness (aka brain fog.)

I do have to admit I am completely confused to why you believe that Modafinil is dangerous? Is there some sort of research that I have missed? As @D.Rabbie pointed out it is a drug that people have been taking for decades now without any sort of issues.

There's ample information.

 

[Abrin]

There's ample information.

I did a quick Google around after you mentioned it and I honestly didn't find much. That is why I asked if there was some sort of research that I had missed.

 

[pattismith]

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.

It just has helped my brain fog to be slightly easier to live with.

I wish I could tolerate it like you do. It makes my heart beat faster and worsen my adrenaline surges with more skip beats down the road....So I take it but not every day.

Alertness-enhancing effect of modafinil may affect the autonomic nervous system in the periphery [61,62].
Modafinil increases resting heart rate and blood pressure. Modafinil elicits plasma and urine norepinephrine and urine epinephrine (adrenaline).

Modafinil may induce sympathomedullary activation.

Usage of modafinil could be restricted to patients with heart disease because it causes excessive peripheral autonomic activation.

Practical Use and Risk of Modafinil, a Novel Waking Drug (nih.gov)

 

[YippeeKi YOW !!]

I do have to admit I am completely confused to why you believe that Modafinil is dangerous?

I'm probably not a good source because of my skepticism about the many over-uses and off-label uses for often extremely intrusive and potentially damaging psychoactive drugs, which are thrown around like party favors, usually y Drs who have no real depth of understanding of the actual mode of action of th drugs they'r prescribing, let alone the side effects they can produce, many even in short-term use.

Even researchers couch their pronouncements re Modafinil very carefully: they 'believe' that it works by increasing the immediate availability of neurotransmitters like catecholamines, monoamines, serotonin, adenosine, dopamine, and noradrenaline. That's a whole lotta neurotransmitter to be fiddling with, unless Modafinil is absolutely the drug of choice for what ails 'ya, and prescribed by someone truly educated in depth on how those systems work, as well as the potential penalties of fiddling with them too much and too long.

The basic above-the-line side effects of Modafinil are at best unpleasant, at very worst possibly life-threatening, but what we sometimes forget when evaluating side effects in a risk-reward analysis is that the side effect itself isnt a stand-alone. It's caused by some malfunction in some body or brain system, and it may be the body's way of sending the user an SOS .....

SIDE EFFECTS, ALTH I'M SURE YOU'VE ALREADY LOOKD INTO THIS...

• headache
• dizziness
• difficulty falling asleep or staying asleep
• drowsiness
• nausea
• diarrhea
• constipation
• gas
• heartburn
• loss of appetite
• unusual tastes
• dry mouth
• excessive thirst
• nosebleed
• flushing
• sweating
• tight muscles or difficulty moving
• back pain
• confusion
• uncontrollable shaking of a part of your body
• burning, tingling, or numbness of the skin
• difficulty seeing or eye pain

HERE ARE SOME OF THE REALLY SERIOUS SIDE EFFECTS THAT REQUIRE A MEDICAL CONSULTATION:

• rashes
• blisters
• peeling skin
• mouth sores
• hives
• itching, often severe
• hoarseness
• difficulty breathing or swallowing
• swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
• chest pain
• fast, pounding, or irregular heartbeat
• frenzied, abnormally excited mood
• hallucinating (seeing things or hearing voices that do not exist)
• anxiety
• depression
• thinking about killing or harming yourself

There are more side effects, but the above are the ones that the manufacturer couldnt avoid listing because of their prevalence or severity.

There's virtually no information on long-term effects of Modafinil because it's not in the interests of manufacturers to do the research, which would in essence make them pay the not inconsiderable costs of doing a really good, double-blind, long term analysis that might knock their drug off the Medical Top Ten List, or out of the running entirely.

When issues were raised about long term liver damage, Pharma stated coyly that there have not been reports of clinically apparent liver injury due to Modafinil. Which doesnt actually say that there hasnt been evidence, just that the manufacturers are blissfully ignorant of anything that they regard as significant testing/research in that area, beyond, possibly, anecdotal reports, which translates to '...patient complaints...'.
...
And most of us have learned how effective or motivating 'patient complaints' are to most Drs.

Like many other drugs, the manufacturer will wait til it kills a few or a few hundred people, at which point they'll consider doing the research then wait til the FDA forces them to.

If it works for you, that's really the primary bottom line, and as I've said before, the rest is just footnotes. But be alert, and keep a wary eye on what that relief may be costing you down the road....

EDIT .... misplaced comma and the usual typos .... courtesy of my mild-ish but irritating OCD ....

 

[Sophiedw]

Hello @D.Rabbie - sorry to hear you are struggling. I have to say I haven’t read through this entire thread but I’m on a really good Facebook group called ‘recovering from long Covid’ where the man has invented a protocol which supposedly stimulates autophagy to clear out viral remnants. There’s a list of supplements in a handy Amazon wish list and it is mainly geared towards stimulating autophagy on the weekend by eating olive oil or fasting. People having good results on there if you’d like to try it out.
Good luck

 

[Sophiedw]

Also possibly handy for CFS? It’s there’s a shared etiology there? If anybody wants to try the crux of the protocol is eating 2 table spoons of olive oil which supposedly stimulates autophagy of damaged and disease cells and cellular elements... easy to try but potentially be cautious with severe fatigue coz the symptoms get worse before better 🤷‍♀️

 

[Sophiedw]

https://m.facebook.com/groups/2559838777474649?group_view_referrer=search

 

[Hip]

Finally, I tried Heptaminol + Cinnarazine today and this is helping me so much with the fatigue.

Very interesting @D.Rabbie.

A patient in this thread (@GloriaDG) got amazing results from cinnarizine, which moved her from moderate ME/CFS to near remission. She developed an ME/CFS-like condition following dengue virus infection (a virus known to cause a fatiguing illness). She found the effect of cinnarizine kicked in within a few hours.



Are you still taking cinnarizine, and if so, what dose are you using? I believe cinnarizine is usually dosed two or three times a day.

Cinnarizine is an over-the-counter drug (at least in the UK).

 

[Abrin]

There's virtually no information on long-term effects of Modafinil because it's not in the interests of manufacturers to do the research, which would in essence make them pay the not inconsiderable costs of doing a really good, double-blind, long term analysis that might knock their drug off the Medical Top Ten List, or out of the running entirely.
a, beyond, possibly, anecdotal reports, which translates to '...patient complaints...'.

<snip>

Like many other drugs, the manufacturer will wait til it kills a few or a few hundred people, at which point they'll consider doing the research then wait til the FDA forces them to.

Sorry about the delay in responding to this, I only just saw it.

In regards to risk-management:

While it is true that there is virtually no information on the long-term effects of Modafinil it has been given to people with Narcolepsy on a daily basis as the main treatment for it since 2008.

Also the side effects listed are the same for the majority of anti-depressants on the market.

 

[max_yazhbin]

I got the coronavirus-19 a few months ago. I got post-COVID syndrome afterwards and it's been 2 months and the fatigue wasn't getting any better.

I tried Levothyroxine, caffeine, nicotine, l-carnitine l tartrate and ginkgo biloba without any improvements.

Finally, I tried Heptaminol + Cinnarazine today and this is helping me so much with the fatigue.

Heptaminol has a positive inotropic effect on the heart, so it makes the heart pump blood more potently/efficiently.

Cinnarazine has vasodilatory effect on the brain's blood vessels and I feel with Heptaminol it's helping mental fatigue quite a lot.

I hope this helps someone else out there!

if you haven't seen my coronavirus experience, feel free to take a look at: https://forums.phoenixrising.me/threads/gumweed-leaf-tea-helped-me-overcome-covid.83924/

 

[Wanja]

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.

Would you like to share what were the medications you took which you are damaged from now?

 

[Aidan Walsh]

Off Topic link: The Guardian online today in the UK put out work from London & Swedish Teams saying Fibromyalgia is an autoimmune condition & say as well they likely will find the same in CFS & long COVID patients.

They mention treatment would be by blood plasma exchanges, they also mention Fibromyalgia is not caused by the Brain as thought but by the immune system. The work in Sweden was also able to find the same in their

Swedish samples, The work Published came out of King's College Neuroscience London, UK