In June 2022 I got Covid which brought on a new batch of symptoms. This last December out of nowhere I started experiencing dizziness that would also come with headaches. I do sometimes have OI but haven't really experienced it much lately which makes me believe that the two are not related. The dizziness waxes and wanes in intensity as do the headaches but they are always there to some degree. I've had ME/CFS for 8 years and this completely new. I have not experienced any head trauma so I'm not sure what might be causing this. I'm going to see a neurologist in September but I'm curious if anyone has experienced this or have any ideas about the cause?
Dizziness and Headaches
- Thread starter ulysses27
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Judee
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I always used to think mine was just mild OI and maybe it was and now has just gotten worse but testing recently seems to point to full blown POTS for me. Have you pursued any POTS testing?
I had a 10 minute standing test (NASA standing test) in the doctor's office with the nurse there and later that week a 48-hr holter. I haven't talked to my doctor yet but I think the results on both point to POTS.
I talked a little more about the standing test in this thread: https://forums.phoenixrising.me/thr...-cfs-patients-video.52312/page-2#post-2437221 (I didn't know there was prep work to prepare ahead. I think that made my results clearer.)
Edit: Now back on beta blockers I can feel when my bp drops and it really does feel like the blood is draining out of my brain leading to a headache. They help me with the tachy but I'm not sure they are really helping with the rest of the POTS picture. I'm considering weaning off of them to see if I feel better even though I'll probably get the tachy back.
I had a 10 minute standing test (NASA standing test) in the doctor's office with the nurse there and later that week a 48-hr holter. I haven't talked to my doctor yet but I think the results on both point to POTS.
I talked a little more about the standing test in this thread: https://forums.phoenixrising.me/thr...-cfs-patients-video.52312/page-2#post-2437221 (I didn't know there was prep work to prepare ahead. I think that made my results clearer.)
Edit: Now back on beta blockers I can feel when my bp drops and it really does feel like the blood is draining out of my brain leading to a headache. They help me with the tachy but I'm not sure they are really helping with the rest of the POTS picture. I'm considering weaning off of them to see if I feel better even though I'll probably get the tachy back.
Mimicry
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In my case, covid triggered a chronic migraine in spring 2022 and it sometimes makes me terribly lightheaded (I can't even see properly). Could your issues be migraine as well?
Wayne
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Hi @ulysses27 -- I had Long-COVID for a little over a year, with my worst symptom being far worsened dizziness and vertigo. I started taking Methylene Blue this past February, and it seems to have cleared it up. -- Good luck finding something that works for you!
Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)
Judee
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I've had two episodes where I experience vertigo and both times I suspected my C1-C2 were out of alignment.
A couple of visits to the chiropractor cleared it up.
My ME is worse now so I haven't been able to get back to him in a long time.
I'm getting dizziness now but I just weaned off of beta blockers last week so that could be why. Still I wish I could get to the chiropractor to find out if being adjusted again would help.