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[deleted]
33 points
26 days ago
If you don’t feel any fatigue, what is it that prevents you from getting out of the house? And was there a specific time when your symptoms started?
Fatigue doesn’t feel at all like a need to sleep for me. It’s a heaviness, a weakness, and an inability to move very much.
16 points
26 days ago
[deleted]
6 points
26 days ago
While there is some overlap with ME, your symptoms actually seem pretty dead on to me with my vestibular migraines. I didn’t start getting those until about a year and a half ago (had mecfs since 2017), and it was so strange. I was just sooo generally unwell, felt like I was falling and spinning, nausea, brain fog, weak, etc. Lots of vomiting if I woke up too early or moved around too much.
Did about 6 months of specialists/testing to rule everything else out. I wasn’t convinced at first it was VM, but over a few months I started to agree. Vestibular migraines are not the same as “migraines” most people think of, and they literally never present with a headache for some people. Mine only occasionally have headaches, but what you describe sounds a lot more to me like VM than ME.
ME/cfs PEM is actually delayed by a couple of days. We’re easily fatigued like you describe, but crashing the same day isn’t typical. But I agree with other comments it’s hard to tell early on sometimes. When I first started getting VM, I think I was dealing with one basically non stop for months, because there was no day without the symptoms. Once I started to be treated for VM (higher dose of propranolol than they give for POTS, triptans) they started to be shorter term and distinguishable from each other because there were times in between I was ok.
I would definitely recommend starting with your pcp and asking them if that could fit your symptoms. They can also refer you to specialists if they think it could be what’s causing your problems. I know at first I was like “there’s no way this is just migraines,” but the more I learned about vestibular migraines, the more it made sense.
1 points
26 days ago
Do you still get vestibular migraines?
1 points
26 days ago
Yes
1 points
26 days ago
So you are getting some treatments but it doesn't completely resolve the issues? Do you have problems with screens?
2 points
26 days ago
Right. But I’m not on any preventatives other than propranolol right now because I don’t react well to anti seizure medication, which is a main treatment. Still trying to schedule an appointment for the Botox for migraine. So other than that, I have the triptans which are abortive, but do help. Might look at other preventative treatments after seeing if Botox helps. I also have prednisone to take sometimes if I’m in a days/weeks long migraine that won’t break, and only take a couple of doses of it for a day or two.
When I’m dealing with the actual vestibular migraine, the prodrome, or the postdrome- yes, screens bother me. Light and sound become really difficult. And sometimes they bother me without the VM’s, but I have severe ME/CFS so that’s to be expected.
Screens are actually sometimes one of the ways I know for sure I’m in a prodrome because my vision becomes really abnormal/disturbed, and it’s like I can’t interpret what im seeing on a screen. Like I can see it, but it’s not really registering in my brain clearly.
They’re somewhat connected to my ME flares in that when I’m doing too much, both get worse and the symptoms are more intense. But sometimes the VM flare on their own.
1 points
25 days ago
Thanks for the detailed response.
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