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Migraine as main PEM symptom- and treatments?

Messages
12
Hi friends!! Does anyone else experience migraine as one of their main PEM symptoms? And if so, have you found anything that helps? I've seen some posts on PEM-busters on this forum, but I'm wondering if anyone who also gets PEM migraines has found anything that helps get at them. Thank you!
 

hapl808

Senior Member
Messages
2,052
I do - usually 1-2 days after cognitive or physical exertion. My progression is normally acid reflux first, then headache or migraine.

Not much helps unfortunately, although I've tried a lot of stuff. Obviously main thing is not to overexert, although 'over' is such a movie target and sometimes can just be a long phone call for me (relatively severe).

Things that help a bit. I don't like NSAIDs, but if it's getting bad I'll take some ibuprofen with a strong tea or coffee for the caffeine. Other things that help in small ways - magnesium glycinate or threonate, boswellia, curcumin (never seems to help but the research always sounds promising), NAC, butterbur with feverfew, passion flower, rhodiola, chinese skullcap.

I would say those are probably the ones that seem most helpful, but really I haven't been very successful. If I overdo it, acid reflux and worse than usual headaches are coming (I always have some level of headache brain fog), and often will turn into a migraine (for me adds visual problems, nausea, etc).
 

GreenEdge

Senior Member
Messages
563
Location
Brisbane, Australia
If I get a headache or chest pain, I find Niacin (flush type) that dilates blood vessels works great and is the safest option. Niacin 100mg with at least half a glass of water on an empty stomach. If I've just eaten, I will take 200mg and the effect will be stronger but delayed.

Use of Niacin depletes methyl groups, so to replenish I take TMG (Tri-Methyl-Glycine) which donates 3 methyl groups and a 1 Glycine per molecule.
 
Messages
184
I do get the awful heartburn. Is that the same as chest pain? One thing that sometimes help is a teaspoon of amino acid L-glutamine. An old trick for GI upset. Well documented. As Hap mentioned, magnesium can also play a part in the heartburn. I have the best luck with plain old magnesium oxide. I do not take enough of it to have any problem with it becoming laxative in effect.

GreenEdge I am also a fan of real niacin. You are aware of the gout like problems it can cause? The gout like side effects of real niacin are very real. Something like 10% of people that try real niacin end up having to quit, while others have to lower the amount to the range you report using. Are you using nicotinic acid or some exotic form?
 

hapl808

Senior Member
Messages
2,052
Glutamine unfortunately seems to make symptoms worse for me. Sounds so promising for leaky gut, but I wonder if it could disrupt the balance needed to avoid glutamate toxicity.

Niacin seems okay for me, but doesn't help with the headaches or migraines much. There's a small benefit if I can manage to take it before the headache starts, but even then it's minimal. I've also tried the non-flush type, and that doesn't seem to do much. I've tried combining it with methyl donors like TMG or SAMe and so forth. Small energy benefits, but doesn't affect the acid reflux and migraines.

Heartburn can manifest as chest pain, coughing (that's one of my big ones), sour stomach, and so forth. Depends on the type of heartburn as well (LES, etc). It's very frustrating. Things that seem the best (for me) at mitigating it to some degree: slippery elm, fenugreek, marshmallow, dairy (seems like a no-no, but surprisingly I do better when eating dairy as opposed to cutting it out), not going to sleep with an empty stomach (another surprising and counter-intuitive one for me), melatonin, antacids for temporary relief (only helps for a bit and doesn't affect the proceeding headache), etc. Just got some aloe vera to trial again - wasn't helpful in the past, but it's been a few years since I tried it last.
 

hapl808

Senior Member
Messages
2,052
Huge amounts of L-glutamine might not cause glutamate toxicity, either. The two really are not related, despite similar sounding names.

I believe that all this stuff is poorly understood, so what we're experiencing in the first place is 'highly unlikely' to begin with. Most neurologists will tell you all of this is nonsense, but when I take glutamine I feel worse. Not sure why.

MSG sensitivity itself is believed by many to not be a real thing, yet for those of us who experience it, it feels very real. There have been a few times I didn't realize I was consuming MSG and ended up in bed for weeks. Clearly something is wrong with our systems, but I don't know what. My guess is the BBB and other aspects of our systems are badly compromised, therefore 'normal' reactions don't apply to us.

I mention glutamate toxicity in this relation as some of the symptoms always seem to resonate with what I personally experience. No idea if that's what's happening. But I have major cognitive issues, extreme motor problems (inability to walk, muscle stiffness and weakness, tremors, etc), and so forth.

Glutamine and glutamate are not related, but the interaction in the brain is incredibly complex and poorly understood. I believe glutamine can be converted to glutamate by glutiminase as part of glutaminolysis. I don't pretend to understand all the interactions, but I believe there needs to be a balance to avoid excitotoxicity. In a healthy brain, that's not an issue, but even things like the Gulf War Diet seem to attempt to address imbalances in glutamate (free glutamate in that case).

Glutamine could also be involved if my problem is inability to deal with ammonia levels, although other simple experiments that should have helped that didn't improve my condition.

But again - who knows. N=1 isn't science, just trying to improve my symptoms.
 

BrightCandle

Senior Member
Messages
1,147
...

But again - who knows. N=1 isn't science, just trying to improve my symptoms.
The quality of "science" done around the symptoms of ME/CFS is so bad that we can't remotely expect our lived experiences to make it into the medical record at this stage, medicine is still in complete crisis around every chronic condition and is gaslighting basically every patient about their own diseases.

Many people have issues with glutamate, I do with MSG. But there is basically no record of ME/CFS that isn't sanitised down, many times with no PEM included in the definition. None of that is the patients faults, medicine is just broken. Your N=1 is probably more accurate than any piece of science written so far.
 

hapl808

Senior Member
Messages
2,052
The quality of "science" done around the symptoms of ME/CFS is so bad that we can't remotely expect our lived experiences to make it into the medical record at this stage, medicine is still in complete crisis around every chronic condition and is gaslighting basically every patient about their own diseases.

Agree 100%. I know my chart bears little resemblance to my actual experiences, so even EHR analysis is useless which is such a wasted opportunity. Before AI can solve the problem, it has to solve the problem of entrenched gatekeeping and gaslighting, dismissal of all things that contradict the dogma and unwillingness to even collect data that questions it, etc.
 
Messages
184
Amino acid L-Glutamine has been my go to of choice for decades, and I have been using it successfully for GI problems probably related to EPI, which has only recently been diagnosed and treatment started. Since starting the EPI Rx treatment the GI symptoms have mostly gone away, but I am still getting irregularly timed (no rhyme or reason) heartburn. The l-glutamine still works for the heartburn. Sometime I have to keep taking it for a while until the heartburn goes away, and other times the first dose does the trick. I only use powder that dissolves in a small glass of water.

Interesting to note that MSG is yet another disgusting corn product. I am a bit sensitive to MSG, and can always tell if a restaurant that claims no MSG is actually using MSG. It gives me instant heartburn and later some GI distress, but nothing too dramatic.
 

hapl808

Senior Member
Messages
2,052
I get neither migraines nor PEM.

I might've missed before, but what health symptoms are you looking to resolve? I thought PEM was one of the hallmarks of ME/CFS, although I guess some criteria don't require it. (Not everyone here is in the ME/CFS group, but seems like the majority fall into that general disorder subset.)
 

lyran

Senior Member
Messages
192
LDN if it is caused by low endorphins, hydrogen water and ibuprofen may also help if it is not caused by it. Oregano oil may also help sometimes.
 

hapl808

Senior Member
Messages
2,052
I do not get disabling PEM. I don't think that way.

Not sure the value you see in posting on every thread that you don't get PEM because you don't think that way. That's called 'not having ME/CFS' or being extremely mild and pushing through.

I admit I didn't 'believe' in PEM when I was mild because I just constantly crashed and pushed through, ascribing each crash to whatever food or activity or illness. And 20 years ago PEM was less known or accepted by medicine. But I didn't find the need to join chronic illness forums so I could tell everyone their main symptoms were due to flawed thinking.

Would you agree if someone said they don't have GI problems because they 'don't think that way'? Seems like an easy solution.

You joined a board for ME/CFS where according to the CDC and others PEM is a hallmark diagnostic criterion. We're now seeing it in Long Covid as well. Yet you believe without any room for doubt that PEM is not real and the CDC and NIH and every academic institution is getting it wrong?

https://www.cdc.gov/me-cfs/healthca...-mecfs/treating-most-disruptive-symptoms.html
https://www.cdc.gov/me-cfs/healthca...~:text=Post-exertional malaise,or even weeks.
https://snyderlabs.stanford.edu/crashcourse/
https://medicine.yale.edu/news-arti...rly-understood-ailments-like-chronic-fatigue/
 

Azayliah

Senior Member
Messages
156
Location
USA
I am on a few preventative medications for migraine (Ajovy, lamotrigine). Aside from that and avoiding direct triggers, I mainly rely on habits to reduce migraines frequency, length, and severity. That kind of thing might help you, if you're not doing so already.

Neck & shoulder stretches. Some meditative stuff to relax facial and shoulder muscles, and reduce cumulative effects of stress. Taking in enough salt and water (at least 24 fluid ounces/day, but 36 is better). Moderating foods that are not direct triggers but lead to migraine if eaten over the course of several days (ex: nuts).

If all else fails, for me there's ibuprofen and Ubrelvy, which can take them away completely. Some people find that 1/2 cup of juice will clear them, and if that works for you then being very careful about meal timing and size, carbs, etc. is very important.