• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Aspirin

Oliver3

Senior Member
Messages
846
@Oliver3 - I just took 2 aspirin (325 mg each). I woke up crashed today, and unfortunately only remembered this thread a little while ago, but better late than never! And after I took the aspirin, I looked up the thread and saw that you took about 1/4 of what I just did! I'm not worried about it, just am curious to see if it will help. I wish I had remembered aspirin this morning!

I'm wondering if we all experience PEM the same way - for me it's exhaustion and aches, it feels like lactic acid but it always settles in the posterior part of my body - my back, backs of my legs, it used to hit the backs of my arms, so it's easily distinguishable for me from regular muscle aches if one over does something, though it's been so long since I had muscle aches from using my muscles!

ETA: What I'm wondering is if aspirin would have any effect on what I presume is lactic acid which has accumulated due to anaerobic metabolism, which I'm theorizing is at the root of my achiness and exhaustion - it's not even really exhaustion, it's a lack of energy - I think there's a difference.
Did it help in the end Mary
 

Woof!

Senior Member
Messages
523
I have genetic and infection-driven hypercoagulation, and have been looking for a good answer. I cannot take aspirin because all forms have corn derivatives and I'm allergic to corn...I'd be interested if anyone has any info on better alternatives.
@Learner1 - I can't take most forms of aspirin (most forms of medication in tablet or capsule form, actually) due to strong starch and grain sensitivites, but I can take over-the-counter BC Powders with no issues. The active ingredients are simply aspirin and caffeine and they come in two aspirin strengths. The inactive ingredients are docusate Na+, fumaric acid, lactose monohydrate, K+Cl- and Na+ benzoate. No starches or corn derivatives! They're easy to swallow with water (to wash down their otherwise-bitter taste), and like all aspirin types, are best taken with food.

I find they're good for many headaches, pre-migraines (if I catch them early enough) and aches & pains not related to fibromyalgia (for me, FM pain is only treatable with dry needling). When I take them, I know sleeping isn't going to be an option for awhile, due to the caffeine, but when I need them, I'm too painful to sleep things off, anyway.

I hope this helps!
 

Oliver3

Senior Member
Messages
846
@Oliver3 , unfortunately, not that I could tell! But I would like to try it again the next time I crash and hopefully take the aspirin in the very beginning and see if it does anything.
Yes, they're does seem to be a window of effectiveness.
I had to go for a blood test the other week. Usually the nurse really struggles to get blood. This time it just ran great! Something is stopping totall perfusion.
I also took aspirin last night before bed( with smthg to eat) and I woke up actually refreshed.
That hasn't happened in like decades!!!
It's no cure but its deffo a tool I can drop on when things are bad or I just wanna cut down the chest pains , or adrenaline feeling and the pressure in my neck. Deffo helps with dysautonomia. But I need to be careful. I don't wanna use them and it can really irritate my stomach so I always eat a fair beat and wrap the aspirin inside a bolus of food.
I don't wanna make it sound like a cure or anything but it has a better effect than diaezepam does for calming me, which is crazy!
I'm still sick but at least there's some wiggle room.
Only hope other members get some help. Be careful of all the dangers of aspirin obviously. Just right now, for me, it deffo seems like a lesser danger
 

ChookityPop

Senior Member
Messages
583
@Learner1

I haven't personally had any significant side effects from Nattokinase, Bromelain or Lumbronkinase supplments. The only thing I can attribute to them, which is based on the way you take Nattokinase/Lumbronkinase 2 hours after food and 1 hour before, is that after that hour I feel nauseous and need to eat something so they do upset my digestion somehow. Bromelain I don't don't notice its x3 a day with food. They have worked as advertised, my blood is clotting less readily and noticeably more flowing than it was before. Blood pressure has dropped a little.

There are other recommendations in the paper linked from the HELP Apherisis thread if you want to look through what else is recommended pre that procedure since it talks about attempts to break down clots using drugs.
Which dose of bromelain, nattokinase and Lumbrokinase do you take?
 

BrightCandle

Senior Member
Messages
1,147
Which dose of bromelain, nattokinase and Lumbrokinase do you take?

I took what was on the packet, so 3x Bromelain a day and 1 x of either Lumbrokinase or Nattokinase when I switched over. This took about 2 months to get me into not clotting safely territory and I taper off over the past week and ended yesterday.

My next experiment in this regard will be antiplatelet combined with anticoagulants based on the paper yesterday, so grape seed extract and probably Nattokinase for at least a month if my body will stand it.

If you start this please check your blood with a lancet regularly, the moment odd things start happening you need to stop, these do actually work.
 

Marylib

Senior Member
Messages
1,155
I wish there were a way to convince my stomach to tolerate aspirin better. It's such a valuable medication. Seems it suppresses the prostaglandin hormone that keeps the stomach lining happy, and which many of us with mast cell problems remember from the days when every menstrual cycle brought a torture of pain (before the days of NSAID's or non-steroidal antiinflammatories like ibuprofen. No one I knew had heard of mast cell disorder in those days.)

As to heparin, I guess I am okay with it since I put it into my central line when I de-access my port a cath. So far no clotting issues with my beloved port. My father and one sister at one time both had a problem with excessive bleeding and slow clotting, but I never noticed it in myself.
 
Messages
67
@Oliver3 - I just took 2 aspirin (325 mg each). I woke up crashed today.
Yesterday I had an aspirin/caffeine (500mg/50mg) combo for an incipient migraine, as my doc suggested.

I haven't taken an aspirin in 25 years since my pediatrician told me not to because of my easy bruising.

The thing is, yesterday it kind of worked ok and I had no problems. But today, I got up in the middle of the night because of the pain, and it has been like that for the whole day. Terrible pain and hyperalgesia. I feel like shit, but not my usual shitty day.

Does anybody else have problems like this with ASA? Cannot think of one reasonable explanation...
 

Violeta

Senior Member
Messages
2,895
I usually take aspirin in the form of alka seltzer. It's acidity is neutralized by the sodium bicarb, but the resulting form of aspirin works just as well, even better than aspirin for some things.
 

Woof!

Senior Member
Messages
523
Yesterday I had an aspirin/caffeine (500mg/50mg) combo for an incipient migraine, as my doc suggested.

The thing is, yesterday it kind of worked ok and I had no problems. But today, I got up in the middle of the night because of the pain, and it has been like that for the whole day. Terrible pain and hyperalgesia. I feel like shit, but not my usual shitty day. Does anybody else have problems like this with ASA? Cannot think of one reasonable explanation...
What you describe happening once isn't necessarily cause-and-effect (MHO). My middle-of-the-night migraines are triggered by several things, most often one or more of these things:
(1) neck position (my C2 goes out of whack easily)
(2) Sjogrens Syndrome (the migraines occur concurrently with extremely dry eyes, nose and sinuses)
(3) dietary and environmental sensitivities (range from apples to grains, common plant allergens, fragrance exposure and dust mites in particular blankets)

(2) and (3) above often come hand-in-hand.

BC Powders (aspirin & caffeine) get me out of the migraine if I take them quickly enough. Yes, if I take too many doses on an empty stomach, my stomach isn't happy for a while, but when that is the case, I try a dose or two of benedryl instead (which doesn't work near as well). And yes, once I take the powdered aspirin/caffeine product, I'm wide awake and unable to sleep for several hours (welcome to my life), but the intense pain of a migraine keeps me up anyway, so I don't have any other good choices.

It's on my to-do list to see if a local compounding pharmacy will compound aspirin without caffeine or binders...I keep forgetting to make the calls. That said, I'll look into Alka-Selzer products. @Violeta, does the product you use contain any grains or starches as a binder?

To try and address the real cause of my migraines, I use a D-Core pillow and artificial tear products, plus strictly avoid a long list of dietary and environmental triggers, so I don't have to reach for meds of any kind. Sad to say, I've had three mid-night migraines in the past 5 days, all due to fragrance exposure (a person visiting who used Gain detergent to wash their clothes - aargh!!!!!!!:aghhh::aghhh::aghhh:) outdoors, no less (it only takes being downwind of such a product for a few seconds to cause me issues for several days) :ill::ill::ill::eek:
 

Violeta

Senior Member
Messages
2,895
What you describe happening once isn't necessarily cause-and-effect (MHO). My middle-of-the-night migraines are triggered by several things, most often one or more of these things:
(1) neck position (my C2 goes out of whack easily)
(2) Sjogrens Syndrome (the migraines occur concurrently with extremely dry eyes, nose and sinuses)
(3) dietary and environmental sensitivities (range from apples to grains, common plant allergens, fragrance exposure and dust mites in particular blankets)

(2) and (3) above often come hand-in-hand.

BC Powders (aspirin & caffeine) get me out of the migraine if I take them quickly enough. Yes, if I take too many doses on an empty stomach, my stomach isn't happy for a while, but when that is the case, I try a dose or two of benedryl instead (which doesn't work near as well). And yes, once I take the powdered aspirin/caffeine product, I'm wide awake and unable to sleep for several hours (welcome to my life), but the intense pain of a migraine keeps me up anyway, so I don't have any other good choices.

It's on my to-do list to see if a local compounding pharmacy will compound aspirin without caffeine or binders...I keep forgetting to make the calls. That said, I'll look into Alka-Selzer products. @Violeta, does the product you use contain any grains or starches as a binder?

To try and address the real cause of my migraines, I use a D-Core pillow and artificial tear products, plus strictly avoid a long list of dietary and environmental triggers, so I don't have to reach for meds of any kind. Sad to say, I've had three mid-night migraines in the past 5 days, all due to fragrance exposure (a person visiting who used Gain detergent to wash their clothes - aargh!!!!!!!:aghhh::aghhh::aghhh:) outdoors, no less (it only takes being downwind of such a product for a few seconds to cause me issues for several days) :ill::ill::ill::eek:


Chemical sensitivity is one of the first symptoms I had. So I found it interesting that Martin Pall says that multiple chemical sensitivity is one of the "diseases" that involved peroxynitrite.

Here's a link.

https://www.clinicaleducation.org/resources/reviews/how-can-we-cure-noonoo-cycle-diseases-a-review/
 

Violeta

Senior Member
Messages
2,895
Chemical sensitivity is one of the first symptoms I had. So I found it interesting that Martin Pall says that multiple chemical sensitivity is one of the "diseases" that involved peroxynitrite.

Here's a link.

https://www.clinicaleducation.org/resources/reviews/how-can-we-cure-noonoo-cycle-diseases-a-review/

I don't understand it yet, but found this:
Excessive nitric oxide

Nitric oxide is released from the cerebral vasculature, brain tissue and nerve endings. It may cause headache in migraine. It may damage brain cells leading to neurodegenerative diseases like Parkinson disease, Alzheimer disease, Huntington disease and amyotrophic lateral sclerosis.

This study by Pall is directly related to MCS. Maybe this will explain it.

https://pubmed.ncbi.nlm.nih.gov/12948884/
 
Messages
67
Was it the asprin that had the bad effect or the caffeine?

Can't know for sure. I have no problems with coffee but truth be told it was awake longer than usual, but kind of expected.
What you describe happening once isn't necessarily cause-and-effect (MHO). My middle-of-the-night migraines are triggered by several things, most often one or more of these things:

I've had the problem you described, migraines waking me up due to neck position, but they are much better and under control nowadays. I have monoclonal antibodies for my migraines and they work wonders. I'm down to 2 to 6 episodes per month (from almost 20).

I didn't explain the problem very well. The pain wasn't from a migraine, I took it because of one and it kind of worked, but the next day I had horrible body pain, especially in my arms and legs. The pain in my knees was terrible! I have been awake other times by pain, but this time was different and lasted the whole day.

I don't know if this is going to happen every time I have ASA. It was just one time, so not necessarily cause-and-effect, of course. I'll try again and report the results.
I really wanted to ask since it was so strange (feeling better and then worse the next day). I was just curious if someone experienced pain the day after an aspirin.
 

Oliver3

Senior Member
Messages
846
Can't know for sure. I have no problems with coffee but truth be told it was awake longer than usual, but kind of expected.


I've had the problem you described, migraines waking me up due to neck position, but they are much better and under control nowadays. I have monoclonal antibodies for my migraines and they work wonders. I'm down to 2 to 6 episodes per month (from almost 20).

I didn't explain the problem very well. The pain wasn't from a migraine, I took it because of one and it kind of worked, but the next day I had horrible body pain, especially in my arms and legs. The pain in my knees was terrible! I have been awake other times by pain, but this time was different and lasted the whole day.

I don't know if this is going to happen every time I have ASA. It was just one time, so not necessarily cause-and-effect, of course. I'll try again and report the results.
I really wanted to ask since it was so strange (feeling better and then worse the next day). I was just curious if someone experienced pain the day after an aspirin.
Sadly these things are all trial and error and we pay don't we? Sorry it roughed you up