Migraine can be responsible for distressing symptoms throughout the body. This is interesting!

[Wolfcub]

https://www.thewaltoncentre.nhs.uk/...oduction/Migraine - A Comprehensive Guide.pdf

....increased awareness of normal body sensation in migraine can for example mean that normal sensation is amplified to cause a feeling of tingling or soreness of the skin or even pain and tenderness in various parts of the body, including the chest, abdomen, pelvis, neck, joints or muscles.
There may be an increased awareness of normal feelings within the gut, the heart may seem to race or beat heavily or there may be feelings of dizziness (vertigo).

...Migraine starts in the brain but the way it affects the nerves in
the brain means it can lead to pain, stiffness, tenderness and aching in the neck....
....Similarly, the pain may be experienced in the face, sinuses or teeth. Some people with migraine may experience pain even outside of the head and next area, in their legs or chest or stomach.

....Autonomic symptoms are present in up to 60% of migraine patients while these symptoms may be quite mild, they may sometimes lead to confusion in diagnosis and management, leading to inappropriate and incorrect diagnosis in some patients....

Generalised autonomic disturbance:
Nausea or vomiting
Pallor
Passing a lot of urine
Diarrhoea
A fast heart rate or drop in blood pressure
Sweating or flushing

And a headache is not always present:

...Although headaches are often the most prominent feature of chronic migraine, some people experience relatively little or no discomfort.
As migraine is more often than not very treatable, it is always worth considering this diagnosis when patients have a long list of symptoms that may for example include fatigue, facial or sinus discomfort, dizziness, vertigo, blackouts, blocked ears, generalised body pains and tenderness, neck pain, tingling, numbness down one side of the face or body, irritable bowel symptoms, depression, irritability, poor memory or forgetfulness, poor sleep, twitching and/or night time restless legs symptoms.

 

[wabi-sabi]

Yes, Oliver Sacks has a good book on this topic.

 

[Wolfcub]

When I first became unwell in March 2018 I had nausea (mild-ish) a persistent unilateral "twinge" -over my right eye in the forehead area, tremor, sleep disturbances, weakness and exhaustion, heart palpitations, changes to my feelings (tearfulness), then for one week, ibs-like symptoms, which at that time went away and didn't come back.

It felt fluey like a virus.

However, prior to this I'd had a classic migraine "aura" (silver zig-zag light show) However, that had come 10 days before the other symptoms. My doctor didn't think it was migraine because of the 10 day delay. A neurologist diagnosed me with "likely migraine phenomena", but even he was unsure and admitted it. A CT scan revealed nothing abnormal.

Lately (last three/four months) I've been having ibs-like symptoms again which started suddenly and have not gone yet though I get days when it's not there. I thought that was a lingering thing from Covid.
I get bloated lower belly which goes overnight and returns gradually the next day. Sensitivity to some foods, particularly fruit and vegetables. Some irregularity with bowel movements which is most unlike my normal state.

Stool tests tell me I have no cancer, and no inflammation.

Then last week I got migraine aura three times (no headache, but an increased exhaustion after exertion.) Bloated lower belly again. And a splendid "aura" today, like bevelled crystal with rainbows in it!

This is beginning to make me wonder. Could my ME/CFS actually be a really atypical form of migraine?

 

[Rebeccare]

Could my ME/CFS actually be a really atypical form of migraine?

That's what my doctor thought when I first developed ME/CFS symptoms! He tried me on a few medications that didn't help (and some of the side-effects were unpleasant), so we jettisoned that theory for me. But based on what you say, it sounds like it could be possible for you! It might be worthwhile to talk with a neurologist. At the very least, they might be willing to consider it because of those spectacular auras. It's like your own personal light show!

 

[Wolfcub]

That's what my doctor thought when I first developed symptoms! He tried me on a few medications that didn't help (and some of the side-effects were unpleasant), so we jettisoned that theory for me.

It makes me wonder even more. Your doctor eliminated migraine as the main issue with your ME/CFS (although you may still also get migraines)
I am at the stage now where I don't know for sure if what I have wrong at base level is migraine, period.

The neurologist originally did think so, I think based on my description of that "aura" which happened 10 days before the other symptoms all came at once.

I remember I kept asking him why I felt all the other (non-migraine) symptoms, and wasn't actually getting a classic migraine headache. And why was I feeling such exhaustion, and why did it feel like a flu that wouldn't go away?
He never explained that for me.

 

[Mary]

@Wolfcub - that's a very interesting link and certainly an intriguing theory! I have no idea if it's valid or not, but I think it's certainly worth investigating. This might help explain why physically you seem able to do more than most of us with ME/CFS. It might be a good thing - there may be treatment to help you! Wow - almost unimaginable, right?

Do you know what the treatment would be if your symptoms turned out to be due to atypical migraine? My ex-husband would get ocular migraines (no headache but a lot of other symptoms) if he skipped breakfast and his blood sugar got too low.

 

[Wolfcub]

I felt terribly drained and exhausted today. I could hardly put one foot in front of the other, and I had logs to split. (thankfully with a mechanical log splitter!)
And I also had the very slight head twinges over my right eye. They honestly are so slight, no-one could even call them a bona fide headache, but they always come in with the bad exhaustion and a general awful low feeling.
I slept well, just woke "hungover".

Is it co-incidence that I got two migraine auras in 6 days? And yesterday a really beautiful one?

I haven't fully investigated the treatments. I never thought of doing that. I think Tryptans are mentioned, but I haven't remembered properly. In passing I seem to recall they can have side effects.....
BUT...there is a nerve stimulator which is completely non-invasive, and has some great benefits to those who do suffer proper "migraine" with headaches.
I don't know whether it would be worth trying that? It possibly might be worth experimenting. It stimulates the trigeminal nerve which leads to the brain stem.
It's mentioned on the above article.

I also get mysterious jaw pains, and toothaches which disappear, and I have had my teeth X-rayed, and no problems. I get neck pain which radiates to my chest. And sometimes crazy feelings in my legs. (hard to describe but extra creepy!)

I also put this out just in case there may be others out there who could find this useful

 

[Blue Jay]

I appreciate this, Wolfcub, especially as I'm going through a migrainous sort of few days at the moment after having a nice lull. I don't often get an aura but, like you, i have the weird jaw pains, teeth aching (putting it mildly) and bad neck pain. This present bout started with a fairly mile one-sided headache and a slight feeling of nausea and took a few days to develop into a more severe head pain and swimmy head.

Could be coincidence but I've had a worrying week or so concerning my husband's cancer treatment but that has resolved - at least for the time being. I'm taking things as easy as I can for a while.

I take Nortryptiline and Propranolol which has helped in that I get fewer migraines and I have half a Sumatriptan when I get an attack.

The first time I had a really bad migraine was at the beginning of going down with a virus that led to me being diagnosed with ME. I had indescribable pain everywhere at that time which was 23 years ago.

 

[Mary]

I don't know whether it would be worth trying that? It possibly might be worth experimenting. It stimulates the trigeminal nerve which leads to the brain stem.
It's mentioned on the above article.

I think anything and everything are worth trying (unless there are severe risks which must be weighed) when trying to regain our health! I have tried a million things, and have had good results with a couple of them, well worth the experimenting.

 

[Wolfcub]

Could be coincidence but I've had a worrying week or so concerning my husband's cancer treatment but that has resolved - at least for the time being. I'm taking things as easy as I can for a while.

I am so sorry @Blue Jay My kindest thoughts and wishes for you both

 

[Rufous McKinney]

I also get mysterious jaw pains, and toothaches which disappear, and I have had my teeth X-rayed,

At times, I get alot of jaw tension- and inflamatory cycles which inflame the pulp that supports my teeth. Then, there are "channels"..which inflame more- two teeth in particular, I get severe pain the nerves as if the tooth is going bad- but nothing is wrong with it. Also- tooth pain that just jumps around from tooth to tooth.

My opinion- the jaw stuff can have little or nothing to do with tooth grinding and stress they like to hang it on.

I found a CBD creme that proved very helpful in reducing the jaw tensions. It also-reduced pain in a particular nerve- that is not calming. I put it on near my nose and it reaches the nerve beneath and subsides some.

I have alot of daily cycling of swelling. Wonder what an immunologist would say?

 

[Abrin]

Yes, Oliver Sacks has a good book on this topic.

Which one of his books was that in?

I was trying to remember which one it could of been but of course, memory isn't working at all. Sighs.

 

[andyguitar]

I've posted on this website many times about the relationship between migraine and cfs. There is a good paper about it. Unfortunatly due to technical problems I can't get a link. But if you put this into google it should come up PMID: 21375763 There is a lot there! But if you go to the end of the paper (Discussion) the main points are covered. Like it says "We propose that mechanisms of migraine pathophysiology may contribute to other cfs symptoms in addition to headache. If so anti migraine treatments maybe beneficial for cfs related symptoms even in subjects who do not have migraine.

 

[andyguitar]

Which one of his books was that in?

I was trying to remember which one it could of been but of course, memory isn't working at all. Sighs.

It's called "Migraine" published in 1970.

 

[Abrin]

It's called "Migraine" published in 1970.

Thanks!

I don't actually think I've ever read that one. I'll have to see if my local library has it.

 

[Wolfcub]

I've posted on this website many times about the relationship between migraine and cfs. There is a good paper about it. Unfortunatly due to technical problems I can't get a link. But if you put this into google it should come up PMID: 21375763 There is a lot there! But if you go to the end of the paper (Discussion) the main points are covered. Like it says "We propose that mechanisms of migraine pathophysiology may contribute to other cfs symptoms in addition to headache. If so anti migraine treatments maybe beneficial for cfs related symptoms even in subjects who do not have migraine.

Thank you so much @andyguitar I missed your previous posts! I'll take a look there.

 

[andyguitar]

There's a new class of drugs to treat migraine. Calcitonin Gene Related Peptide Monoclonal Antibodies. They look promising.

 

[Wolfcub]

I still get PEM though. However it can behave in a weird way. and a bit irrationally sometimes. I worked hard physically last week, and wasn't too bad at the time, but have paid for it since. That's quite a delay. I didn't measure it precisely, and am inclined to lose track of time a bit (3-4 days ago can feel like more than a week to me.)
I am not good at tracking PEM. Because I have a tendency to keep going so long as I feel moderately okay (long standing habit) Too stoical.
But I do know I feel a bit worse the last 2 days for having done too much (a few days ago?)

There are such things as "silent migraines" (auras and visual disturbances without headaches/nausea.)

I remember having one when my husband was dying in 1999. I saw beautiful lights and silver shimmers all around the top of his bed. That had never happened before to me.
(At first I wondered if I was having a stroke, then......Okay this is woo-woo.....I wondered if it was the Spirit world surrounding him! Bless his Soul.)

Now I know that's a migraine aura. But I had no other symptoms to follow. I was strong then.

 

[Wolfcub]

There's a new class of drugs to treat migraine. Calcitonin Gene Related Peptide Monoclonal Antibodies. They look promising.

That's interesting. Thank you @andyguitar I will check that out.

 

[andyguitar]

But I do know I feel a bit worse the last 2 days for having done too much (a few days ago?)

There are many warning signs that a migraine is on its way. Some report feeling a bit hyper in the days before one comes on. So the "feeling worse" might be the arrival of the migraine. Get my drift?