Kat

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

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

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 tell what medication has helped you the most? I will keep re-reading your post. It does give me hope. Kat

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.

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....

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 like to figure out the best way to live with this. Right now, I get up and do a little something around the house and then lay back down. It is like that all day. Most of my time is spent in bed. Any advice about sleep, eating...anything would be appreciated. My other question would be, if a lot of people with POTS have other conditions also? Thanks for your help. Kat

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.

Are issues with balance common to POTS patients? Thanks.

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!

Thank you for your responses. I was so confused because it seems everything I had seen referred to a BP drop when standing and I knew I was the opposite. I have traveled to different neurologist that specialize in movement disorders because I thought that was all it was. (not that that was not enough) They all said there was more going on then just the orthostatic myoclonus/tremor. I did go to Mayo but the concentration was on the tremor. I keep seeing things that I am experiencing on this forum. I am spending the majority of my time laying down. I am really thinking this may be my core problem. I am wondering if it is smart to go ahead and try the beta blocker in the meantime while I am looking for a specialist or just to hold out? The medications I have tried have not been helpful. Again thank you. After all these years, this may really be it.

Hi, This is my first post and I am thinking that this may be a forum that will be helpful to me. I have been sick for over 6 years now. I have been to over 10 neurologist and finally got a diagnosis of Orthostatic Myoclonus. Basically, if I stand very long my legs get very shaky and I have to lay down. As time has gone on the tremor has spread. Now I have problems being upright, period. If I am upright very long, even sitting, I get a heavy head, dizzy, clumsy, tremulous and my eyesight gets blurry. When I am laying down, life is good. Sometimes I feel like I will pass out. My neuro sent me to the cardiologist. The cardiologist says that when I stand my heart rate increases by at least 30 beats and I have high blood pressure. He mentioned that this could be a problem with the autonomic nervous system. He suggested a beta blocker but wanted me to have a couple of tests done and to follow up with my neuro. I have done the tests, spoke with my neuro about what exactly is an autonomic problem. I can't say he had much to tell me. Through some research I came across this page. I am confused. Can you have an autonomic condition with you BP rising upon standing instead of falling? Can your heart rate rise instead of fall? Do these symptoms sound familiar to anyone? I am wondering if the tremor could all be part of this problem as I was in good health before all this craziness began. I don't know if any of this makes sense. I would love to hear any ones thoughts. Kat