PEM headache might be caused by intracranial hypertension

[borko2100]

I was reading this paper (2021):

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-03143-3

And stumbled upon this interesting excerpt:

Hypoperfusion of skeletal muscle together with mitochondrial dysfunction leads to the excessive production of various endogenous vasodilators in skeletal muscles and to their spillover into the systemic circulation, from where they can reach every organ including the brain [43]. One of these mediators, bradykinin, is the most potent opener of the blood brain barrier (BBB) [1, 31] which may be of relevance for the neurological findings and symptoms. Opening of the BBB may explain moderate IH for which we have provided the evidence above. We could not find in the literature what the symptoms of isolated opening of the BBB would be but we assume it to be rather pathological. The algesic and hyperalgesic properties of the tissue mediators released from skeletal muscles may cause headache by directly acting on cerebrovascular nociceptors, by the release of CGRP and substance P and by edematous distension. Headache could also originate from myalgia of head and neck muscles and from IH

To put it in simple terms, the author thinks that when we exert our muscles certain substances are released to compensate for the lack of energy. These same substances are vasodilators i.e. they expand the blood vessels, including those in the head leading to increase in intracranial pressure.

Now this is very interesting to me, because the PEM headache I get feels exactly like that, i.e. a feeling of outward pressure.

There have been studies that show increased intracranial pressure in CFS sufferers, thus supporting their theory. Too bad there have not been any studies measuring intracranial pressure before and after an activity (eg. stress test on a bike). That's the kind of studies we need to fully confirm this theory.

In conclusion this seems quite an interesting lead. Granted, even if the hypothesis is confirmed, it still does not tell us what is causing the underlying energy dysfunction. But at the least it would give us some proof that there is something wrong, possibly a new tool doctors could use for diagnosis too.

 

[xebex]

Really interesting and relevant findings I think.

I definitely have issues with vasodilation and it does seem to be triggered by using my muscles - specifically the mid to upper back muscles.
Vasoconstrictors like ritalin have been helpful in the past but sadly side effects outweighed the benefits.

@Rufous McKinney heres some explanation of why ritalin may help with the back muscles.

 

[Shanti1]

@borko2100 I think this is an interesting line of inquiry. In his talk at the IACFS/ME conference Dr. Systrom mentioned CGRP as being a vasodilator of interest in for its role in facilitating the arterio-venous shunting proposed to be a pathogenic manifestation in Small Fiber Neuropathy, POTS, FM and ME/CFS.

CGRP inhibitors are the newest class of migraine meds. At first they were available only via injection, but there are oral options available now, but hard to get ahold of without a prescription. Systrom noted that some of his patients put on CGRP for migraines had an improvement in their other symptoms. Health rising has some additional info on CGRP and its therapeutic potential in FM. Will be interesting to keep an eye on this one.

It is interesting how our muscles maybe starved for oxygen at the microvascular level, yet our extremities get flooded with blood and we have pooling due to inappropriate vasodilation, CGRP, and shunting. Then I think the situation gets worse with the stagnant blood complicating oxygen delivery. At the same time, our poor brains are hypoperfused

 

[borko2100]

@borko2100 I think this is an interesting line of inquiry. In his talk at the IACFS/ME conference Dr. Systrom mentioned CGRP as being a vasodilator of interest in for its role in facilitating the arterio-venous shunting proposed to be a pathogenic manifestation in Small Fiber Neuropathy, POTS, FM and ME/CFS.

CGRP inhibitors are the newest class of migraine meds. At first they were available only via injection, but there are oral options available now, but hard to get ahold of without a prescription. Systrom note that some of his patients put on CGRP for migraines had an improvement in their other symptoms. Health rising has some additional info on CGRP and its therapeutic potential in FM. Will be interesting to keep an eye on this one.

It is interesting how our muscles maybe starved for oxygen at the microvascular level, yet our extremities get flooded with blood and we have pooling due to inappropriate vasodilation, CGRP, and shunting. Then I think the situation gets worse with the stagnant blood complicating oxygen delivery. At the same time, our poor brains are hyperperfused

Seems like a promising drug, if nothing else at least a relief from that headache would be great. I don't know how easy it would be getting a doc to prescribe it though. Especially outside of the US finding a CFS literate doc is very hard.

 

[BrightCandle]

An NHS headache clinic offered to try CGRP Inhibitors for my migraines about 5 years ago. Then the headache clinic ghosted me, then Neurology discharged me having not helped me at all against my will, then the headache clinic denied I was ever referred to them at all and that was that. Almost so close to trying something that might have worked.

 

[BrightCandle]

I did finally get onto the CGRP Inhibitaor (fremanezumab) and it does nothing at all after 3 months. There is a bit of buzz around these due to a recent paper (https://www.sciencedirect.com/science/article/abs/pii/S0306456523000104) but I didn't find it effected my headaches or anything else at all.