nmorgen

Morgen:

What is "utricle" damage? This is one I haven't heard of. Is it part of the ear or eye? What do you mean by your good eye?

Thanks.

The utricle is the small organ in your inner ear that basically tells your body how to balance itself. They found that my eye on the same side (my right) doesn't track. It doesn't follow motion like it is suppose to. When I watch tv or anything similar I turn my head and watch from my left eye. This is completely subconscious. I don't even realize I'm doing it. The utricle damage causes me to feel like I'm on a boat. I subconsciously rock all of the time; sitting or standing. It makes me a little self conscious, because I know i probably look crazy constantly rocking back and forth, but I can't stop myself.

They happened to be studying this at mayo in Jacksonville b/c a lot of military were experiencing this after concussive blows from ieds.

..........with me? we can share food ideas, what we eat, exercise and LOSS?

Serious committment. I GOTTA!

Sure, I want to lose a little weight.

My body seems to adjust to activity. I went from having to sit in the shower to walking 2-3 miles. Even when I feel bad I push myself and eventually I do feel better.

As far as the panic/fear it took me months to feel safe enough to actually do anything. I carried my blood pressure cuff everywhere. We moved to a foreign country and it has taken me several months to adjust to being alone. My mother was always there before and after diagnosis. I had to keep telling myself it's just POTS your not dying. If you need something at first to help you relax then definitely use it. I think it's the horrors we experience before diagnosis, especially the ER visits when we think we are dying that cause this fear. I no longer carry my blood pressure cuff everywhere. You'll eventually be able to tell when you are having a problem and need medication. I always carry my clonidine and water.

I wish you the best of luck. The fear is definitely the hardest to beat for me. I still haven't made it to the point where I can do a lot on my own. I wait till my DH is around just in case. Eventually I hope to move past this, as nothing really bad has happened when I push myself.

I have these or something similar. I call them tremors, but they couldn't catch them in a sleep study. I usually get them in my legs, but I also get them in my chest, which is very bothersome. They are very fast muscle spasms. When they are in my chest it feels like my heart is racing, but my pulse is usually normal. The muscles in my chest are racing, lol. I usually take magnesium and it seems to help. When they were really bad I took norflex and they completely stopped. They do come back, but the norflex worked. It's a muscle relaxer used for Parkinsons. I no longer take the norflex as I woke up 1 morning and felt like I was jumping out of my skin. Give the magnesium a try. It does seem to calm them down. I wish I could try other things, but I am scared of medication and supplements now.

Yes this is my worst symptom, but I don't know if I have the same kind of dizziness other POTS people talk about. Mine is a constant fog in my head-- like I am slightly drunk all the time and when I am at my worst almost feel delirious. There is a constant pressure in my head and ears, feels like I can't see, even though my vision tests fine, my eyes don't feel right. It's very hard for me to read. Things don't look "blurry" but more hazy. I feel off balance when standing - sometimes like I am swaying. I have cognitive problems -- at times severe (well, feels that way even though people say I seem fine). I also having dizziness when going from bending to standing, but this is a different feeling. Laying down helps sometimes. It's just the worst feeling in the world and if I could get rid of this one symptom, I could deal with the rest.

I have gone the ENT (neuro-otology) route and was diagnosed with "borderline" Meniere's by one Dr, Hydrops by another. I do wonder if there is a vestibular connection with POTS. I think there is an article or two that makes this link. I posted a poll a while back and A LOT of people responded that they have ear problems. The irony with ear diagnoses however-- the treatment for those ear disorders is to eliminate salt (as much as possible), even take diuretics. The main treatment for POTS? Load up on salt and fluid. I give up.

Do others feel like I described or is it more a true spinning type of dizzy? I am not sure if my type of dizzy is from the POTS or the inner ear problems.

I have this same type of dizziness. Like I'm in a fog or smoky room and the pressure. I constantly pop my ear and that seems to help a lot. I have had a few times with the spinning but it was only while laying down. I have noticed lately that I have started to get motion sickness, which really *****. I had the hot/cold ear test done at Mayo in Jacksonville. They told me that I have utricle damage. There isn't anything I can do about it, just get used to it. I do watch things through my "one good eye". The eye with utricle damage doesn't track. I think it was the utricle damage that caught my POTS. I can feel when I have a blood pressure change. They say I have the hyper POTS and my blood pressure rises and my pulse pressure narrows. Before I had my tilt table my cardiologist thought something was wrong with my blood pressure machine b/c my pulse pressure narrows so much that I would be in congestive heart failure. This is what makes me feel really bad.

Back to the dizzines, I haven't noticed any lessoning of this symptom at all. Ear popping is the only thing that helps. If anyone has tried something that works I would be interested. This is by far my worst symptom. Tremors come in a close second.

Thanks so much for the info. I will definitely be looking at getting one of these loggers.

I used to have an Omron pulse monitor, but it was lost in our move. Are the polar pulse monitors the best?

Simmy, I was wondering which polar you have and what recorder did you hook it up to. I am definitely interested in doing the same thing. Especially when I am on my feet for long periods and while sleeping.

I take my clonidine strictly at night. The first two months starting it was really bad for me.

For the first month I could only sleep four hours after taking it and then I couldn't go back to sleep. I had to take naps during the day.

The second month I experienced the vivid dreams. I still get these periodically.

At this point I think my body has adjusted to my dose and I don't experience many side effects.

I was diagnosed with Hyperadrenergic POTS.

I wasn't given anything during my TTT. My blood pressure was signifigantly higher than yours and my pulse pressure narrows signifigantly to around 15. The narrow pulse pressure is what makes me feel horrible.

My blood pressure spikes and low pulse pressure is what made me go to a cardiologist in the first place. I told him that my highest bp after folding laundrey and feeling terrible was 175 over 157 with 160 pulse. He told me that the reading had to be faulty as I would be in congestive heart failure. After the tests he called me and told me that I was correct about my pulse pressure becoming so narrow.

I'm taking clonidine and it has helped. I still have problems, but my pulse pressure has gotten better and I don't feel like I'm having a heart attack everytime I get up to walk around the house.

Good luck.

I wonder if anyone can identify with what happens to me when my POTS is bad.

I actually had quite a good day yesterday, and even had enough energy to clean the bathroom! I did though feel quite full of adrenaline, which usually accompanies these "good days"

Then as soon as I tried to sleep I could feel my heart racing, and I was agitated and felt strong palpitations. In many ways I think these episodes I get mirror those felt by Austin on the superb DINET DVD, who said hers occured during the night. I didn't sleep much and as a result feel rather shattered today. I did notice earlier in the week some low BP and low pulse pressure readings especially on standing and some giant pulse rises- so guess it's a flare.

Can anyone else identify with these heart episodes at night?

Thank you

Sue

xx

Hi Sue,

Before my current weird low pulse problem this was quite common for me to have issues at night. Usually, when I had been busy or active during the day. That's why originally I didn't think I had POTS. My worst symptoms were at night. They diagnosed me with hyperadrenergic POTS, so I'm guessing the norepinephrine does build up and cause the weird symptoms at night. When this happens I take a little more clonidine and it calms down so I can sleep.

Thanks for both of your responses.

I had a UTI about a month ago other than allergies I don't think I have any other problems. Well, other than POTs yuckiness. My hr has really just dropped and I don't seem to be getting much jump in it when I stand and sometimes even after walking around, it just wants to stay in the 70s, but my bp is going through the roof. I'm afraid to take any more clonidine b/c I'm afraid I'll crash. I have had a weird bubble popping sensation in my chest. It feels like little air bubbles popping. My POTS only seems to kick in when I'm walking for a long time or on my feet for a long time. I'm beginning to wonder if I even have it, or if I might have something else going wrong. My muscle spasms/tremors have been really bad. I just feel horrible.

Hi,

I was wondering if anyone else has had a drastic drop in their pulse, but high blood pressure. The past 2 weeks I haven't been feeling very well. My pulse has dropped into the seventies while standing, but my blood pressure has been high and variable ranging from 150/105 to 119/88. I've been having headaches for the past 2 weeks, I'm sure they are caused by the blood pressure. My hands also turn bright red and swell.We moved from AL to Switerland and I am trying to find a cardiologist who knows about POTS and who speaks English. It's not going very well. I currently taking clonidine. I was diagnosed with hyperadrenergic pots 17 months ago at UAB. I'm just wondering if anyone else has experienced this, because it a little stressing especially as I don't have access to a physician. I would really appreciate help or just your thoughts on what is happening. Thanks