Alaska

When standing still my bpm increased as my blood pressure decreases. I will stand against the wall or just stand still. I think standing against the wall is more for safety if you actually faint, as they often will say to also put a pillow under and by you.

Went to the cardiologist last week for the first time. I have been diagnosed neurally mediated hypotension now for about 2 years. I have been given the protocol to help with my condition, such as tilting the head of my bead, exercise, more salt, good sleep, eating smaller portions, compression socks, medications, and AT HOME TILT TRAINING. SO, I have been doing all of those.... well that's what I was telling myself. When I went to the cardiologist this week he said, "so, how is the home tilt training going". I said, "well I've done some." I pride myself and say "I'm going to do everything possible to get better", yet I was there in the office telling the opposite to the Doctor. He pulled up an article study that showed after tilt training for 6 months daily that "50% of HOT subjects and 20% of control subjects were syncope-free at 6 months". Why haven't I been doing this then? Well, the study did recognize that having people do daily standing against the wall for up to 45 minutes was difficult and many people were not compliant. This lack of compliance made other studies on tilt training unreliable. It was a wake up call for me. I want so bad to get better, but I'm not doing what is requested for me. I'm willing to accept I'm not doing everything. SO, 3 days ago I started the tilt training at home. I just put on a show or a movie and just start standing at the wall with arms down. I am starting at 30 minutes and plan to build on that. BUT, I'm going for daily... no excuses. And I'm going to try for 6 months. It's hard because it takes up time AND who knows if it will really work. But research says it does! WHO WANTS TO JOIN ME? This is going to be difficult I think, and I would like support of others and I would like to support you guys also. I wonder if we can keep this link going for 6 months and post struggles and successes? This will be like a weight watchers thing.. but maybe we could give it a creative name like "tilt watchers". Here is the article and research: http://europace.oxfordjournals.org/content/12/2/240.full?sid=149c29a4-807f-45d5-bf60-e0b9c67555b5

I don't have a form, but a symptom list broken down to body parts. For example, like "brain", "eye's", "GI", "cognitive" , "heart" and so on. I then put what my most recent symptoms have been on the top. I list my current meds. I put what test has tested positive for (I don't list the ones with negative). Family medical history. I once had the form too wordy, as stated by the Doctor. He was right, as that would overwhelm anyone looking at it. So I changed it to have only short statements under the symptoms like "dizzy when sitting still". I update the symptoms and bring it to any new Doc I go to. It helps me keep things in order also.

I think getting better sleep helps some. Mine brain feels like I'm holding my breath and trying to process stuff. I notice my symptoms are much better when I don't have to think. But, when i'm engaged in conversation or something I get much worse. If I am sick or didn't get good sleep, things are way worse... like today. My cat wanted my attention at 1am last night.

Two years ago I woke up not breathing... this was before all the other symptoms. I always wondered what happened. I actually did have a sleep study, but I'm not too sure about the accuracy because with all the wires hooked up to me and the video camera on me, not to mention the stiff hospital bed, I didn't sleep well at all. It wasn't my "normal" sleep. But, he did diagnose me with sleep arousal disorder. I started clonazapam and that helped and I had one of the better weeks I have ever had. But, then I gained tolerance and had to go up in dose. Then I gained tolerance again to that higher dose. Finally, I thought this can't be the answer as I will just become addicted to the stuff and not be able to get off of it. I do notice I sleep better if I exercise during the day. Sleep seems to be such a big factor for a lot of us! Wonder if really that is why exercise works so well... maybe it's not so much the increasing heart size and blood volume, but that one sleeps better at night?? Just a thought. I wonder if I should ask the Doc for alternative sleep solutions to see if I improve.

I have been waking up within the first 1-2 hours from sleeping in a state of fear or worry. When I wake up, I feel overwhelmed and my heart feels kinda funny. I wouldn't say my heart is racing. It takes a few minutes to calm down, then I am able to go right back to sleep. But, this can happen again the same night 1-3 times. Usually in the first few hours. Most nights it doesn't happen. I have my bed elevated about 12 inches at the head of the bed. Been doing this now for half a year, not sure if it helps. I should also note that I have a history of sleep walking my whole life (brother and Mother also). These are not my normal sleep walking because I am aware... well not completely at first as when I first wake up I'm out of it wondering why I'm so frightened. Is this what would be considered an addrenal surge? I wondered if I may also be having low blood pressure and because my bed is elevated, my body wakes me up to do something about it. I'm also sure that my history of sleep walking is part of this. I remember somebody posting that they had these surges every time they elevated the bed. Just wondering if this symptom could help the Doc figure out what's going on with me a little beter.

seems one big trigger is a few days with very poor sleep, like going on vacation with an overnight flight

I love that we can talk about it all on this forum. I did a 72 hr fecal fat test which showed abnormal fat levels in fecal sample, but just barely abnormal. So, the Doc wasn't all that worried.

Sorry to hear that man. Hope this is just a quick relapse? Did anything change for you or did you start doing something different? Of course who really knows, right. I always try to figure out "what did I do different" when I start feeling worse, and it can drive one crazy trying to think about what it COULD have been that you did different (like eating something new).

I hear your point and for all I know that's what I'm dealing with also... as I've never had this kind of anxiety. I will get nervous at times for no reason I can think, at moments that should cause no anxiety. But, let's say you have one of those uncontrollable moments of escalating anxiety or panic at a specific place like McDonalds for example. Those high anxiety moments are set into the brain. When you go to McDonalds again you are likely to have a vivid memory of what happened before and you will get that fight or flight response... even if at that moment everything biologically is functioning properly. So, no matter the cause of the anxiety, it is very important to recognize the power of past experiences. Like two months ago I thought I was going to faint when I got my haircut. Last week I was feeling better and got my haircut and I really had to do a lot of cognitive therapy and say in my mind "I'm ok" and "I'm fine." I did fairly well, still some issues.... but I guess that's what I'm trying to say. I am trying to learn how to deal with not being 100%. It's a new thing to get used to. At the store I felt the vertigo feeling, but tried to say in my mind "I'm just a little off, but I'm fine." If I start to think "I'm not fine", then I have learned I make my situation even worse than it already it and then I start to have thoughts like "I better get out of her" or "I can't do it" and my heart starts pounding harder and all of a sudden I really do feel like passing out. So, I feel I have an uncontrolled biological action made worse by my mental response to that biological state. I'm trying to be more at peace with my biological state if possible. Maybe that's the best way of saying it. I should say also that I am a big believer that it's not just in our minds. I actually feel a lot of anger when Docs say that. But, I have to be open to the idea that our minds still have a lot of control. I mean in this situation I'm in where it seems I have no control and the Doctors don't know what to do, I been looking for anything that empowers me to have some control.

I have to say after my tilt table test told me that all the symptoms of feeling poorly were really pre-fainting symptoms, I started having a high degree of anxiety. I started thinking a lot of "what if" questions. Like "what if I'm with my two kids in the store by myself and I faint". They are 2 and 4 yrs old. Or what if while driving. I would get the most anxious about being in places with limited escape, like the store. So, I noticed I became very avoidant. With the added anxiety of these places, I think I started conditioning myself to be nervous of those places and made my symptoms even worse when i went there It's that downward spiral. It really became like a panic disorder, even though I never had a classic panic attack. Also, I have never fainted except on the tilt table. The last few months I've been pushing myself hard to go to those places that scare me and to feel good or be at peace with not feeling well. Does that make sense? So, I may be dizzy but I'm trying to train myself that I'm ok, or at least that I'm not going to faint, because I never do. Instead of getting that hamburger at McDonald's in my car, I'm going in to eat. I've noticed how avoidant I have become. I know I will get better, but until then I'm trying to teach myself to be more at ease with not being at ease or not feeling well (like being dizzy). I know it's not all in our heads, but for me when I found out more of what was "wrong" with me, it messed me up mentally a little. I couldn't and can't stop thinking about it. And others can worsen the anxiety at times by asking repeatedly "are you doing ok", even though it is out of love. The bests times for me is when I'm not thinking about it. Maybe that's a good idea. Make a list of when you are not thinking about it and make sure to do those things often, as a way to cope and give yourself a break.

I go for 2-3 teaspoons a day of iodized salt. I think there is something about using iodized that helps me more, maybe helps the thyroid functioning. I also make sure to eat bananas during the day.

POTS is enough all by itself . I guess it depends what symptoms you suffer from.

So when you got your thyroid levels checked were they "normal"? How are you treating the hypothyroidism?

I have the horizontal grooves on both of my thumbs, but I have a history of picking at the cuticles of my thumbs... don't even think about it, like a nervous habit. So, I don't know if caused by damage to the cuticles (likely) or something more. Wish Docs could put this stuff together better, like this subject and the swallowing issue that was on another post.

If you are salt loading, do you REALLY measure. The reason I say this is because I was trying to get at least 6000mg and thought I was doing this. But, this week I started my mornings off by putting 6000mg of salt in a small plastic container and would use this to measure how much I was getting. I realized after doing this that I had 2000mg left in the containing at the end of the day and know that I didn't get that 2000mg from my other food I ate. So, I thought it was worth bringing this up that it is worth measuring it out to make sure. On another note, I have noticed the best way to have this salt (like 1/2 teaspoon) is to take a big bite of my natural peanut butter and then with the peanut butter still in my mouth take the spoon of salt and eat it together. It's still salty, but it hides it better at least for me. Better than taking salt with water. Have not done the pills yet. Just thought I would share that.

I have this. Food seems to get stuck when I first start eating. It has happened for the last 10 years, well before my other symptoms started. Back then they stated that I had a slight hiatal hernia that was causing it. So, when the food gets stuck, I usually get the hiccups for about 15-30 seconds and then I feel the food or water clear to my stomach and all is good. After that I usually have no more issues eating. I've just kind of gotten used to it. Interesting because the same thing happens with my Mother and I remember it happening to her as a kid. I always wondered the connection with my current symptoms and food getting stuck.

This happens to me when my skin is dry, which happens all the time... because I have dry skin. So, when I start working out my scalp will itch and skin, but then it gets better in a few minutes. It helps to not itch.

I've done both and not sure if it makes me feel any better. Not sure, but it may even be making me feel worse.

Are you salt loading and increasing you fluid intake?

I've only done the one and the person was asking me questions the entire time. In real life situations it seems I get more pre-fainting episodes when I have to process mentally, like conversations.

I have thought a lot about how standing or not standing is related to my current symptoms. When my symptoms started I was doing more sitting than ever, with my new job and then even more sitting with injuring my knee and having surgery on it. Then we had children and I found that I was not getting out as much. I think it's probably multiple things, but sitting most of my day was probably one of the contributing factors. I even thought about that Wiggles actor and thought about his life and how he likely went show to show with lots of sitting on planes and buses. I would be curious if he had to sit a lot between shows?? Regardless, training again to be more vertical I think is part of the answer. So, my bed is tilted. At work, when I'm sitting I try not to cross my legs if I can help it and try not to put my hands above my head. I'm trying to do tilt training two times a day at 10 minutes each time. When watching TV, I try to watch part of it standing instead of sitting. I think the more I can work my heart to return the blood to the heart, the more my body will adjust naturally. That is my hope.

How are you sitting down. I am actually worse sitting down. But, I like the idea. It's your wedding, you can sit if you want to.

This is why I frequent this site. I seem to get more help and information from you guys than all the doctors I have been to.... and at no cost! Thanks for this great list and hard work on it!

Mine was done at the hospital. I passed out at something like 50/30 and passed out under 10 minutes which they thought was very fast. Felt great waking up, but later realized that was probably the iv helping. This test was the first time and only time I have passed out and let me and all the doctors know what was really going on. I heard from one doc that some don't need you to go all the way to passing out to diagnose you. Wish I had that doc as I was basically begging them to stop for Five minutes.