Sildenafil on its effects on Fatigue, Cerebral Blood Flow in ME/CFS

Springbok1988

Springbok1988

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I recently started on daily tadalafil 5 mg to see if it helps any of my symptoms. Today is only my fifth day on it but I have seen mild improvement in some of my symptoms. My brain fog seems slightly better. I also have this strong oppressive feeling in my head that has improved some. I don’t know how to describe the feeling other than that. My head just feels more “open” now and I feel like I can relax a bit more.

I’ve had two side effects so far: headaches and eye pain. I read that this normally goes away after the first week.

I am moderately-severe to severe and haven’t seen any improvement in fatigue or other symptoms.
 
Remi

Remi

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Springbok1988 said:
I recently started on daily tadalafil 5 mg to see if it helps any of my symptoms. Today is only my fifth day on it but I have seen mild improvement in some of my symptoms. My brain fog seems slightly better. I also have this strong oppressive feeling in my head that has improved some. I don’t know how to describe the feeling other than that. My head just feels more “open” now and I feel like I can relax a bit more.

I’ve had two side effects so far: headaches and eye pain. I read that this normally goes away after the first week.

I am moderately-severe to severe and haven’t seen any improvement in fatigue or other symptoms.
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How are you doing now? I have a sort of tension on my crown when I try to think. Severe brainfog, too.
 
Springbok1988

Springbok1988

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Remi said:
How are you doing now? I have a sort of tension on my crown when I try to think. Severe brainfog, too.
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It’s still helping, which is surprising because most things that have helped have stopped working after a week or two. My insomnia initially improved and I got several days without using a sleeping medication for the first time in my adult life but my sleep has gradually worsened back to where it was before I started on it.

My head still feels more open and I still am able to relax a bit more than before. I might try sildenafil at some point but, until then, I plan on staying on this medication.
 
cfs since 1998

cfs since 1998

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kushami said:
Some results were added to the clinical trials website, but there is no interpretation:
https://clinicaltrials.gov/study/NCT00598585?tab=results#results-overview

I think it shows a reduction in fatigue scores, but I’m not sure.

I can’t find anything published in terms of a journal article under the names that were listed for the trial, or searching more generally.
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I asked the researcher and he said they were not able to recruit enough participants to get published in a peer reviewed journal.
 
K

kushami

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@cfs since 1998 , thank you for adding that information. That must have been disappointing for the researchers.

I hope there will be some more studies along these lines.
 
K

kushami

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I’m about to start on tadalafil (as soon as my parcel arrives!). I have cerebral hypoperfusion caused by abnormal vasoconstriction, so I am hoping it will help me.

I have tried various other vasodilators, but not this class of PDE5 inhibitors yet.
 
sb4

sb4

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I have tried it recently.

My experience is that I got erections easier as expected and possibly felt a little calmer though it's hard to tell. Not too much else though. However I have only used it 3 times.
 
Springbok1988

Springbok1988

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Unfortunately, tadalafil doesn’t seem to be helping me anymore. I switched to sildenafil for two weeks but the side effects were too bad, even when splitting the pills. It made my vision turn blue and made me feel sick and disoriented.
 
W

Woodyrob

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Oliver3 said:
https://link.springer.com/article/10.1016/j.pharep.2019.01.005

Just googling Viagra and mitochondria brought up a massive amount of stuff that seems good. Cardio protective, neuro protective, oxidative stress inhibitor etc
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I’ve taken Viagra (Sildenafil) daily for about 7 years. Yet I’ve still deteriorated from ME/CFS.

However Sildenafil is good for brain fog though. Well slightly. And it’s good for peripheral blood flow. But if upright you’ll need to wear compression tights and even a wide compression belt around the stomach. As dilating the blood vessels drops blood pressure. And people can experience worse Orthostatic Intolerance from it, especially on higher doses. Dose adjust for that if not wearing compression garments.

Also Drink a lot of fluids (and electrolytes) to maintain blood pressure

I keep the dose low to avoid developing glaucoma. About 10 to 15 mg 2 to 3 times a day. (Avoid the doses that start turning normal light blue)

There’s been a lot of good research into stroke patients and Head trauma for reestablishing blood flow (used after the acute dangerous stage for those patients after swelling has reduced)

It’s used in premature babies to dilate the tiny blood capillaries in their lungs. I’ve read this would help Long Covid patients who also have lung damage.

Sildenafil hasn’t helped me with air hunger though as that’s our mitochondria not fully extracting or utilising the oxygen it’s been supplied. Although some cases I imagine it might work for a hunger.

Also bodybuilders use Sildenafil to retrain the same muscle groups the following day which they previously couldn’t. You can get Sildenafil a lot cheaper now. As men’s health clinics sell a generic in bulk. It worts out about NZD1.90 a 100mg tablet. So broken into 10mg or even 20mg pieces its really cheap these days.

It’s no game changer for me, but slightly improves my brain fog.

Another thing it does is help reduce the thump of the heart so less aggressive heart beats. I read a study on that and its findings matched my experience.

I’d recommend it still but take low doses as I’ve tried higher doses but that made no difference.

Good luck to all
 
W

Woodyrob

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Springbok1988 said:
Unfortunately, tadalafil doesn’t seem to be helping me anymore. I switched to sildenafil for two weeks but the side effects were too bad, even when splitting the pills. It made my vision turn blue and made me feel sick and disoriented.
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Blue vision is a sign the dose it still too high. You could try even less again to see if that stops. I have between 10mg to 15mg. But even at 5mg it can gently open capillaries to increase blood flow.
So maybe try a fraction of what you were taking
 
K

kushami

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I had two good days from tadalafil followed by a not-so-good day of side effects – feeling a bit faint and sick and legs aching.

I should have started with a lower dose but I was a bit confused as to whether the tablets could be split. I finally concluded that they can be. I will report back about the lower dose.

With my brain fog and poor executive function, I continue to make the mistake of starting things too high. I think I will put a sign in the kitchen saying “Halve the dose”.

I got my 20mg dose suggestion from a study in which it was used for Raynaud’s phenomenon.
 
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hapl808

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kushami said:
I got my 20mg dose suggestion from a study in which it was used for Raynaud’s phenomenon.
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That sounds very high for tadalafil. I've experimented in recent years with taking 2.5mg or so and gotten some small benefits, but never taken it regularly. I should revisit it.

Took it a few times when my illness was in the more mild/moderate stages (for sexual activity - had ED problems immediately after my initial infection / vaccine issues). But I never took more than 5mg and it lasted for a couple days. I think 20mg would not have done good things for me.
 
K

kushami

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@hapl808 , yes, I think 2.5mg would be a good place to start.

I don’t always make the best decisions these days!

I think I can cut my 20mg pills into four pieces. When they arrived and weren’t scored I had a wobble about whether they could be cut or not, especially as they are labelled “film coated”. However, the film seems to be for palatability rather than extended release or similar.

Do you cut yours or did you get 2.5mg ones?
 
W

Woodyrob

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kushami said:
I had two good days from tadalafil followed by a not-so-good day of side effects – feeling a bit faint and sick and legs aching.

I should have started with a lower dose but I was a bit confused as to whether the tablets could be split. I finally concluded that they can be. I will report back about the lower dose.

With my brain fog and poor executive function, I continue to make the mistake of starting things too high. I think I will put a sign in the kitchen saying “Halve the dose”.

I got my 20mg dose suggestion from a study in which it was used for Raynaud’s phenomenon.
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Yeah I think because Sildenafil works drops blood pressure then a dose that high will worsen Orthostatic Intolerance.
I take a lower dose around 10mg to 15 mg. But I wear compression tights and a compression belt, plus I hydrate with water and electrolytes.

The compression garments and hydration alone get me a good 2 hours more upright sitting time.

The sildenafil helps slightly clear the fog. I don’t know if it’s placebo or not. But I mainly take it because I’ve seen several studies showing it gives better brain blood flow to head trauma and stroke recovery patients. I figured that we ME/CFS patients need better flow too.

But the opposite will happen when standing for us with Orthostatic Intolerance, so the compression garments and hydration are important. (Lying down the higher dose doesn’t matter so much)

Note: that higher doses are linked to glaucoma. So avoid high doses that cause vision to see white light as a blue hue.

Another study I read shows the heart thump is softened on Sildenafil. I think anything that reduces that heavy heart thump a lot of us feel, is a good too. As I bet that’s wasting energy. That thump appears to be caused by a poorly regulated autonomic nervous system.

Another study I read showed that men who regularly took Sildenafil for several years had lower incidence of dementia.

I also take a tiny 10mg dose of propranolol as recommended by the Bateman Horne Center for Orthostatic Intolerance

Good luck with trying a reduced dose, I hope it brings some benefits.
 
H

hapl808

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Woodyrob said:
The sildenafil helps slightly clear the fog. I don’t know if it’s placebo or not. But I mainly take it because I’ve seen several studies showing it gives better brain blood flow to head trauma and stroke recovery patients. I figured that we ME/CFS patients need better flow too.

But the opposite will happen when standing for us with Orthostatic Intolerance, so the compression garments and hydration are important. (Lying down the higher dose doesn’t matter so much)
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I wonder if sildenafil or tadalafil is better for me. When I'm slightly crashing / PEM, my blood pressure tends to creep up. I'm feeling a bit rougher than usual today, and it's 125/87 HR92. The HR is normal for me, but I've noticed that when my diastolic gets over 80, that likely means I"m in a bit of a crash. My 'normal' non-crash BP is more like 110/80.
 
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