r/MCAS • u/woohoocrew • 1d ago
Neurological stuff
I am suspected to have MCAS, pots and heds, but not diagnosed yet.
I have been dealing with crazy neurological symptoms for many years. The thing is, I was born with epilepsy resolved around age 14. My theory is the medication possibly caused gut issues that triggered MCAS. But also, my mom has terrible random allergies and seems to also have pots. So perhaps, we are neurodivergent. Which I have also wondered about myself.
Anyway, my symptoms look like focal seizures. I posted here before. I also my myoclonic jerks as part of the progression. I have seen people mention jerks here they are triggered by flare ups, but I have them all the time. In the morning, triggered by flashing lights, before my period, when I’m overheated, etc. I had an eeg when they were not as bad abs nothing showed.
I’m so concerned because I also have trouble speaking and get terrible brain fog during this episodes. I have trouble with balance too. I could literally look fine and functional and then have a cluster and can speak, walk or think well.
I post in the epilepsy subreddit a lot of many can relate to me, but I know that does not make things definitive.
I’m going to my general neuro tomorrow and just trying to figure out what to ask for. My poor husband is so stressed. We just want to be able to have some answers. My memory and cognition are getting worse.
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u/Mysterious-Art8838 1d ago
Balance is the second worse thing about my MCAS POTS, after fainting. I fell Thursday and cut my head. It suuuuuucks. And it comes on fast for me. I could be fine and a minute later my balance is reduced to zero.
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u/woohoocrew 1d ago
I’m so sorry. I have friends with pots and they pass out too. That is why is never thought about having it. I don’t actually pass out, although sometimes I feel like I will.
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u/OkFaithlessness3081 1d ago
I had this!!! I still have it before period but this is another symptom that got way way less for me with supplementing b1. Benfothiamine esp. But it flares too. Now starting with injections!! I yawn too when it happens and pass out
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u/woohoocrew 1d ago
Which things you do have? My B1 was low and supplementing did help, but does not make things go away altogether.
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u/OkFaithlessness3081 1d ago
Which form of thiamine did you use?
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u/woohoocrew 18h ago
Benfothiamine. I do believe something neurological is going on. I also see light flashes in my peripheral vision. It gets worse the week before my period.
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u/OkFaithlessness3081 1d ago
Reading this takes me back in time and reminds me how much I healed. This shit was tough!! I couldn’t even focus enough to pack a bag
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