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Kat

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About Kat

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    Advanced Member

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  • Gender
    Female
  • Location
    Kansas
  1. Hi Suthrngal, Please let us know how it goes with the Nori. That is a medication that I am thinking about trying at the end of the month after I have adjusted to another medication. Thanks, Kat
  2. Hi Janet, Orthostatic Tremor is a movement disorder. It started as a buzzing or vibration. I could have it in any position. Honestly, I think I noticed it more at night when I was still. Overtime it moved more into my legs and was more noticeable when standing. If I stood still very long I would feel very off balance. Then I started having tremor in other places. As things progressed I started having trouble being upright period. My blood pressure and heart rate would go very high and bring on a host of symptoms. Now they have said it is POTS and maybe another type of dysautonomia. I
  3. I have this also. I was diagnosed at Mayo as having Orthostatic Tremor. It started as buzzing and progressed. I am now wondering if it is part of POTS?
  4. Just thought I would mention that I also have myoclonus...which is a jerky tremor. Curious, KCmom if you live in KC. If so where does your son get his medical treatment? Kat
  5. This is really interesting to me. I have horrible brain fog and my vision gets funky. I also get an overall clumsiness. It is hard to know if that is a POTS thing or it has to do with the EEG. I am going to be starting Keppra so from what has been said here, maybe it will help some of my symptoms?
  6. To the people that have the abnormal EEGs or have seizure activity...are you on medication for them?
  7. Thanks Kim. I was reading my post and realized I wrote that my doctors had decided NOT to add POTS to my diagnosis instead of they have NOW decided to add POTS to my diagnosis. I will blame that on brain fog. I will keep keeping on and hopefully see some type of improvement. I don't think I remember what normal even feels like. I see someone standing for a few minutes just shooting the breeze and I find it amazing. I just want to be able to go to some of my kids events. Kat
  8. I see that there are several people that are taking Clonazepam. What symptoms does it help or what is the benefit for people taking it? Thanks Kat
  9. Thank you so much. It has been over 6 years now. There are some days when I am so overwhelmed I can hardly make sense of it and there are others where I think there has to be a way to dig out. I don't expect it to be perfect, but I don't want to lay in bed the rest of my life. I am also D3 and B1 and B12 deficient. I am starting mega doses of these. My doctor wants me to start on Keppra first and then add in the beta blocker. It does not help that I have a fear of medication....brought on by doctors throwing different meds at me when they had no idea what this craziness was. Can you te
  10. I don't know if it is the same thing but mine have just recently shown "seizure activity". I have not had a seizure either, but I don't know if this means one is coming and my doctor is saying that I need to take meds for it.
  11. Yes, I do have high heart rate upon standing. I think the diagnosis was complicated because some of the symptoms can be caused by the other conditions also. I find it all overwhelming and confusing....
  12. I posted a couple of months ago because my doctor had mentioned the possibility of POTS. My neurologist and cardiologist have not decided to add this to my diagnosis of Orthostatic Tremor (myoclonus) and now after a EEG, seizures. The POTS makes the most sense to me because after being upright for only a few minutes, I get tremors, a heavy head, blurry vision, brain fog and I become just clumsy in general. I have been confused about what symptoms go with which condition but I am now thinking that POTS could be to blame for the worst ones. I am starting on a vitamin regime and just would l
  13. I guess I am not alone in the balance issue. Once I am standing for a few minutes anything can happen. My balance goes, I get nystagmus, my vision is blurry, tremor, and a funky head. Kinda makes it hard to get much accomplished.
  14. Are issues with balance common to POTS patients? Thanks.
  15. Thanks. I kinda wondered if going on a medication like that would effect results of testing a new doctor would want to do. I think I will hold off until I see someone new. I will start my search!
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