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Angela

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Posts posted by Angela

  1. yeah, that lady, she is a patient and hasn't come up with anything "published" and don't have much positive to say about her except "Hugs" and "watch out for the snake oil drs" (paranoid/close minded/greedy?) even according to my neuro her overall theory didn't make sense and he is pretty open to checking things out. but yet ccsvi is something to look into as so many similar symptoms we have with peeps with ms etc. he was open to looking at that well, if this get's edited than i will come up with a sweeter explanation of why not on board with her.

  2. my pregnancy didn't cause my pots, i had mild indications for at least 8 years prior. i wouldn't trade my son for anything, getting pots if that was the case. i still work, but I have really bad days where i feel like I can't pull thru. my son wants a little sister he told me today, not sure i could handle that with work and all and don't want my illness 2 get worse let alone I am on clozenapam and you CANT get pregnant taking that, like most meds we all are on.

  3. yes. i think there is something to this. my sis has ms and her symptoms are not so severe as mine with pots. stress triggers her illness, and everyone knows that ms can kill you - in some studies linked with ccsvi. every major stresser she experiences makes her brain cog worse. sounds like pots without the vital issues, yeah? but, i know I am not up to speed now and I think the lack of oxygen is a permanent issue.

  4. dana, i had green and red but they weren't exactly streaks, trying to explain, more like someone took a marker and made a constellation of 2 or 3 connect the dots crooked but in a line, not a shape. the colors kept flashing from green to red. this was during the day. i was on the front porch reading one night (dark except for porch lite)and had flashes of different colors of light in my head, and felt a shaking sensation like my head was shaking so hard, i don't know if it really was. I tried to tell my bf right next to me but couldn't find the words, it only lasted maybe a minute i believe at best. he wasn't paying attention so didn't notice anything.

  5. hey dana, it wasn't my recent worst flare but I think I have what you describe in a sense, like a blob in your eye and it only affected one eye at a time too. I actually had to drive to work covering one eye so I could visualize things almost correctly, that's why they suspected a vein clot in my neck?. came back negative tho plus i have perfect vision.? that symptom went away when my flare subsided and second bad flare seems to be streaks of color or floaters, mostlytho. in the dark, occassional flashing lights thru both major flares

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