Kat

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

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 had thought all tremor issues were due to the OT but as I read about dysautonomia there are a lot of people with tremors. They are both orthostatic conditions so it seems to me they have to be related.

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?

I definitely know that I have something neurological going on. I just wish I understood it better. I think I was thinking that if they got the HR and BP under control then the other things would go away or improve. I am not sure why I thought that way. I still have symptoms being upright...but my HR and BP are much better. You are right it is necessary to do your own research. I have learned so much here!

Thanks Jackie...I am going to look into that. My neuro optho was also stumped but he did say it was a result of a neuro problem. Really?

Do you have dry eye by any chance? My vision is no long crisp. Patterns move and sometimes I see something like heatwaves. I did try some visual therapy but did not notice change. I also now wear reading glasses. I went to a neurologist opthomologist at one point and I am thinking I will go back and see if he comes up with anything else. Sometimes it feels like my eye muscles are tired.

I also have the swaying. Would love to know the cause.

Badhbt, Can I ask what kind of vision issues you get? I feel like every time I go to the doctor, I am adding another symptom. Crazy. After reading a couple of posts on this tread I want to figure out the cause so there is some hope of improving.

Looneymom, I absolutely think the tremor is because of POTS. It is when I am standing or in certain positions. I did see that tremor is sometimes listed as a symptom of POTS and sometimes not. It is not because of medication as I was on none when it started. I was getting tremor when standing and overtime POTS reared its ugly head. I was going to tell you in the earlier post that when I started the beta blocker it did help the tremor in my hands. I don't think it is helping as much but I know it did in the beginning. It was enough that even if it had not helped my HR and BP, I would have been pleased. It has made me more tired then usual but at this point it still has more benefit then not.

Dave and Foggy, that makes total sense to me. It is treating a symptom but not so much the cause...therefore the heart rate is down but you still have the underlying issue going on. Do either of you have any ideas on tests to request being done? When I was i the hospital they did check my nori levels but I am pretty sure it was done wrong. They woke me up...drew blood and then had me stand for 2 minutes and did another draw.

Looneymom, actually that is a good idea. I will try doing that. I just have to feel like I am doing something. I feel like I am on a slide downhill. I also have tremor so the exercise aggravates that. I know that the beta blocker gets a lot of negative reactions...but it has helped my BP and HR. I hope things turn around for your son. This is so hard to deal with as an adult. I can't imagine being a kiddo.

I had all of my vitamin levels checked last time I was in the hospital and they were all up but still on the low side. That is the first time in two years so overall I thought things were going to be looking up. I called and asked the doctor about it and he said that all does not make sense with dysautonomia. I am not asking to got for a jog around the block. I want to make dinner for my family without feeling like I am going to pass out. I feel exactly like I did before the Metoprolol minus the high blood pressure standing and the crazy high heart rate. I am grateful for that....but still. Have to wonder if they or I am missing something.

I finally have my blood pressure and heart rate under control with Metoporlol. Why is it that after being upright for a minute I still feel horrible. Shaking, weird vision, dizzy, clumsy, speech not as clear? I tried Midodrine also and there was no change. I don't get it. Was I just expecting too much?

Has anyone been to Dr Thai in Nebraska?

Thanks!!

Do you know what blood test that is? I just feel like I got the OT diagnosis first but really it is caused by the POTS. I am making a list of things to consider for my neurology appointment Monday.

I had been diagnosed with Orthostatic tremor a couple of years ago at Mayo. Just recently with POTS. When standing my tremor is significant. I cant help but wonder if it is POTS causing the tremor and not Orthostatic tremor. It would sure be nice to have have one issue instead of the two.

I am very interested in this topic. Has anyone read about POT? Primary Orthostatic Tremor? Some of the symptoms are very similar to POTS. I would be interested in anyone's thoughts about this possibly overlapping.

Mine was around 140 when standing also and high blood pressure upon standing. I have been on a beta blocker for 2 weeks now and it has brought both down. I was hoping that it would help with other symptoms. I have not seen that but definitely helped the BP and high heart rate.

Hi. I am not sure if I am posting this in the right place. I am looking for a dr that has some experience with dysautonomia in the Kansas City area. Does anyone have any recommendations? I would travel further...if needed but I really am not up for it at this point. Thanks!

Thanks. I am thinking it might be a pots thing since it is an upright thing. Maybe after I get a few more days behind me it will be better!

I just started Metoprolol and also Vimat during a hospital stay that started with very high blood pressure that for some reason was not relieved by laying down. I know it takes awhile to get used to medications but I am really struggling. I have been having a weird symptom and wondered if anyone else experienced it. When I am upright very long, in addition to my regular symptoms, I am getting a pulling sensation. It kinda feels like my throat to my chest is pulling down. I don't know if it is related or not but when I am eating I am suddenly full and it is like my mouth and throat just can't swallow another bite. Any thoughts?

Kat

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

Wow. Peregrine that is impressive. I had to reread it twice to get make sure I had it right. I am really impressed.

I hate bananas...me too. If it is any consolation, I have kids and a house to run. There are days where I would give just about anything to be able to move back to my parents house. Even being independent, I don't feel independent, if that makes sense.

It takes forever to get a task done because I have to keep laying down in middle of it.

Hi,

I am just curious what a typical day is like for people? How much time do you spend laying down? How you manage to take care of kids or things around the house.

Thanks,

Kat

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?

To the people that have the abnormal EEGs or have seizure activity...are you on medication for them?