Anyone Have A Stress Test Done? Wanting To Know Your Experience

[trappedat20]

So it turns out all of my specialists do know how badly I need oxygen and they want me to have it, but in order for my insurance to cover it my oxygen has to go down to 88 and stay that way for at least 5 minutes in a clinical setting. Since 95% of the time that I run low on oxygen or have a seizure it's while doing physical activity they are having me do a stress echo with 02 sats. I am so excited and scared at the same time. This is one of the few tests I'm having done where I actually think we'll find something out, which is why I'm also nervous in case we don't find anything out. I was originally supposed to have it in the hospital because I'm a seizure risk but apparently their machine is broken so I will have it at my cardiologists.

What should I expect? My main worry is that they won't stress me enough. I need to be stressed out enough that I reach those oxygen requirements and I'm so scared that I won't because I really need it. I'm scared they will be so scared I will have a seizure that they won't push me that hard. Will I be allowed to jog or run or is it just walking? If they hear me breathing heavily or see my heart rate s too high will they make me stop? I don't want to stop until I'm ready to stop.They are doing it on a treadmill. I wish it was stairs since that's a known seizure causer but If I'm stressed enough on a treadmill I'll still get sick. What will happen if I have a seizure and need to lie down? Will I still be hooked up. This sounds horrible but part of me wants to push myself to the seizure point because I will be hooked up to so much stuff that we will know exactly what is happening to my body and to what extent during my seizure and how much damage it could be causing. Is it hooked up to the equipment or is it hooked up to me? I just want to know if I have a seizure and lie down will it still catch everything that is going on. Please give me some advice on this. What was your stress test like? Do they let you get pushed hard and if I layed down will it still catch what is going on?

Thanks guys.

[lewis]

the test is designed to stress you, it will. the tread mill inclines the longer you go and goes faster. I was a runner so I lasted 15 minutes with a hr of 195. you are hooked up the entire time. when I laid down they ultra sounded my heart. I was able to run. if you have a siezure on the tread mill you will probably hurt your self. for me I wouldn't care as long as they could find an answer.

[trappedat20]

That's how I feel. I don't want to have a seizure on the actual treadmill though. I would like to push myself to that point then tell them I need to stop and lie on the floor and seize. I was hoping they would be able to do some kind of test on me while I'm seizing though.

[Katybug]

The leads will still be hooked up to you while you are on the treadmill and for a few minutes after. As lewis stated, they will be able to increase the speed and incline of the treadmill to match what you need to get to your target heart rate.

[trappedat20]

That's good. I'm glad to know that if I get sick and have to get off that I'll still be hooked up so if I have a seizure or come close it will catch everything. I doubt they will let me have a seizure though. If it gets too close to a seizure they will probably make me get off. I looked up a video on youtube and a girl wound up going pretty fast so it looks like they do let you go fast. I hope they don't make me get off because of symptoms though. I wanna stay on until the I might possibly have a seizure and I need to get off point.

[dkd]

For me, they calculated my target heart rate, 175, and let me go until I hit that HR, which didn't take very long--just a few minutes of walking. I was at 135 when they hooked me up. But they will let you run if it takes that to get your HR up.

[lewis]

Also mine was asking the whole time how I was feeling and if I wanted to keep going. I could have said I am done at anytime and laid down on the bed next to the treadmill.

[trappedat20]

There's a bed next to the treadmill? That sounds so much nicer than laying on the floor when I'm done lol.

So they make you stop when you hit your target heart rate? This worries me because I want to all out push myself with the hopes my oxygen will drop and I'll have a seizure or get close to one. This is because I really need oxygen because this happens all of the time at home with the stairs, but insurance won't cover it unless my oxygen is 88 for 5 minutes.

[dkd]

Maybe they won't stop yours? Guess you'll just have to wait and see what happens. Do you know what your heart rate does when your oxygen drops? I'm not sure you can correlate it anyway???

Hope you get some answers soon!

[trappedat20]

My heart rate goes really high after the oxygen drops most of the time. When it's really bad and I'm having double seizures and stuff my heart rate is barely there though.

[BeforeTheMorning]

I've had a stress echo. Like people have said there is a bed right next to the treadmill, and while you are walking on the treadmill they keep asking how you are doing and you can stop at any time you really need to. I found it hard, they increased the speed and the incline of the machine about every three minutes. I didn't quite manage to get to my target heart rate, because I felt so awful I had to ask them to stop, and afterwards they couldn't get my HR down past about 140! Though they kept my sitting there for ages trying to wait for it to come down. So, yeah it is pretty stressful (well it was for me anyway!), of course I'm not hoping you'll get really sick, but I understand you're wanting it to happen while you are being monitored and hopefully you will really get some answers.

Best Wishes,

Lyla

[lewis]

There's a bed next to the treadmill? That sounds so much nicer than laying on the floor when I'm done lol.

So they make you stop when you hit your target heart rate? This worries me because I want to all out push myself with the hopes my oxygen will drop and I'll have a seizure or get close to one. This is because I really need oxygen because this happens all of the time at home with the stairs, but insurance won't cover it unless my oxygen is 88 for 5 minutes.

They told me my target to stop was 165, however I kept going til 195 cause I was feeling just fine. Just be vocal in the test and tell them you want to keep going or your feeling fine. You could say you are starting to notice symptoms but want to keep going.

[lewis]

Also curious if you have had a tilt table test?

[trappedat20]

@BeforeTheMorning Yeah, I know what you're saying. It sounds awful that I really want to get sick, but I get sick all of the time so I might as well get sick when it might actually lead to answers or treatment. At the least if I get sick enough at least insurance will cover oxygen, which is really what I'm aiming for is to get my o2 below 88 and to stay there for 5 minutes. I really, really need oxygen so that my seizures can stop and my o2 will stop dropping crazy low and my doctors agree but I can't get insurance to pick up the tab unless I meet their requirements. It sounds awful that I'm worried about not getting sick enough, but that's how it is. What you're saying makes me feel a little bit better. I'm really glad you guys say there is a bed. What I want to do is to push myself to the point where I'm so sick I may or may not have a seizure (I'll run really low on o2 and get sick but it's only if oxygen doesn't return in enough time that the seizures will happen so I normally don't know til it's too late that it will happen) and then lay on the bed while still hooked up so they can catch everything. I really, really hope this happens.

@Lewis I have not had a tilt table test. I'm scheduled to go to Vanderbilt in February though. Okay, that makes me feel a little better. I want to really push myself so I'm glad that I'll have that opportunity.

[lewis]

My stress test showed that everything was normal. I was far from normal though and it wasn't until the tilt table test that I got some answer on what is going on but not what is causing it. If your having siezures I would have gone for the tilt table first, that way you can seize and you wouldn't risk hurting yourself. The tilt table test was the most brutal test making me fell the worst I have ever felt and I have been through some real serious stuff. February is a long ways to wait. If this test doesn't show anything which it sounds like it should then a tilt table test should show something. I hope you get some answers, I hate not having answers and a way to treat it. Tired of just the bandaids for my broken down system.

[trappedat20]

@Lewis Ugh I know what you mean. They won't even give me band aids because they are too scared to put me on anything because they don't know how I'll react so they are just leaving me defenseless. I'm not too worried about hurting myself. I've never injured myself during a seizure. I don't jerk too much during my seizures. I turn blue, stiffen up, make snorting noises, twitch a little but not really jerks, and twice when I had double seizures I stopped breathing. As long as I lay down before the seizure happens I'll be good. I normally have about 2 minutes before the seizure happens where I feel like I'm going to die and my breathing is all messed up because I can't get oxygen and that is my clue to lay down. Sometimes a seizure will result from this feeling, and sometimes I'll recover and get oxygen again in enough time. I never know until I "wake up" if I seized or not. It's truly an awful feeling. I feel like I'm dying every time it happens but I would love to have it happen while I'm all hooked up in front of a doctor so they can actually help me. It is really dangerous to go so low on oxygen like that that you have seizures, especially with double seizures where I don't have time to recover that's when I feel like I come close to slipping into a coma or something else horrible. Unfortunately, for my insurance to cover oxygen my o2 has to be at 88 for 5 minutes which means I need to make myself as sick as I can for this test so that I can actually get the help I need. If it were stairs I would know without a doubt I would fail, but considering it's a treadmill I feel like I need to push myself harder.

[Katybug]

http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=8032195

Hi! This website isn't relevant to your stress test but I know you've been struggling with diagnosis and suspect mito disease. I found this website and thought it might be helpful to you.

[trappedat20]

Oh wow ty. That was nice of you.

[Racer]

Pharmacological stress test might be a option? They do all the work and you just try to relax. I am to much risk for a regular stress test. I had a EP drug challenge, similar in that they just hooked me up to the ekg and pumped the med into me that did all the work. I just had to relax and stay calm. My test was done in the ep/cath lab and I was hooked up to the defibrillator just in case, but I dont think they do that for a regular pharm. stress test? Anyway, let them know (like a broken record) you feel you have a likely chance of falling, having a seizure, etc.

[trappedat20]

@Racer Yeah, they are already aware that I'm a seizure risk which is partly why I'm worried they won't let me push myself. I'm hoping to have a seizure (although I doubt I will because that's my luck when it comes to tests) so they know what's going on with my body during one. I would like to be safe for one though

[Racer]

No, I meant to keep telling them, like when you show up for the test let them know again. I would keep asking something like "are you sure you will catch me when I fall" or make comments like "the last thing I want is a head injury". The last thing you want is a head injury, so I dont think you want to have a seizure in a uncontrolled setting. Plus, it will probably not mean much diagnostically without the seizure being caught on a eeg. A eeg and stress test are totally different tests. To test for the seizure, the eeg tech could possibly have you do deep breathing, hyperventilation/valsovagal maneuver, etc. They had me hyperventilate for over a minute, long enough that my arms went numb and I felt faint. You could also ask about a ambulatory eeg, they send you home with the eeg for a few days. I also had sleep deprived eeg off seizure meds in the hospital, another common eeg.

I guess I am not understanding why you are wanting to try to diagnose a seizure problem with a cardiac test

I would ask the doctor about the pharm. stress test if you need it done for the breathing issue. I would let the seizure stuff to the neurologists. That brings up my next question, why is your cardiologist diagnosing a respiratory problem with a cardiac test, do you see a specialist for your breathing?

[trappedat20]

@racer I have an ambulatory eeg on right now actually lol. I'm getting it off an hour. They already ruled out epilepsy in the hospital though and said they were seizures from lack of oxygen, but my neurologist did the 3 day eeg anyways just to double check and because I have myoclonus. The reason I'm seeing a cardiologist is because my pulmonologist referred me to one with the hopes of having me get a stress test done with o2 sats. My oxygen drops during physical activity which is why the stress test is neccesary. I'm not really sure if you understand. Since my seizures aren't epileptic and are hyoxic seizures no seizure med is going to help and no eeg is going to catch it, because it's not due to there being too much brain activity, but due to there being too little oxygen in the brain. If you look up lack of oxygen you'll notice that one of the serious symptoms is seizures along with brain death, coma, and breathing stopping. This is why I need to have them catch me during a seizure so it will show up on the test and I can get the oxygen I need because my insurance won't cover oxygen until I meet their rules. The lack of oxygen is bad on it's own but sometimes it gets so bad that it will turn into a seizure and that's why I'm hoping they can catch it. If they catch me during a seizure they should also see my oxygen and everything all messed up and be able to help.

[looneymom]

Your test is this week, Right? I wish you the best and hope they catch it all on video.

[trappedat20]

@looneymom thankyou. My test is tomorrow at 1:45. Super nervous. I stopped taking the creatine temporarily for the test that was helping me so I've been very,very sick the last 2 days. That's actually a good thing though because that means hopefully I'll be this sick tomorrow and it will catch it all. Apparently the creatine wasn't just helping my oxygen but it was helping my heart rate too. I just stood up today and my oxygen dropped to 90 and my heart rate went to 170. I was like "good body. just make sure you remember to pull this crap tomorrow" lol. I've been having a very hard time doing anything and have been practically bed ridden so hopefully my oxygen and heart rate pull this tomorrow and I'll have a seizure and then they'll have to help me. I've come close to seizing a lot the past 2 days from simple stuff so if I'm this sick tomorrow I should seize. Let's hope. Can't wait til the test is over so I can take the creatine again and go take a nice long nap. This is the last test that I'm scheduled. I've been doing so many tests the past 3 weeks that I've had 4-5 appointments over the last few weeks. This is the last one that is scheduled (although they might give me more later although I don't even know what's left that they can test me for) so I can't wait to relax and try to rest after this test. I also have to get bloodwork tomorrow. Then I'm going to get subway to treat myself and take a nice long nap.

[BeforeTheMorning]

I'll be thinking of you tomorrow, hope it goes okay.