trappedat20

@dkd thank you for validating me. When I go to the cardiologist I'll have to bring up the electrophysiologist thing. They said my holter monitor was okay too and that i just showed tachycardia which was something I already knew. I'm so glad nobody has tried to tell me I'm out of shape. I would go off and ask for a new doctor right then and there. When you can't even stand up without your heart rate shooting through the roof and your oxygen sinking it's really hard to exercise as much as a normal person and I wish they were more supportive of that fact.

@Krissy21 I did do the 6 minute walk test but it was while I was having a really good day and they walked me really slow back and forth a small hallway. The lowest my o2 dropped was 92 because it was a good day and it was slow paced. Wow so their oxygen didn't have to stay under 88 for a qualified amount of time they just had to go under. I went to 82 so I really wish that was how it was with me. Maybe my doctors can talk to my insurance companies though.

@Raisin Nobody has given me oxygen to try but I myself am curious if it would help. My cardiologist is the 30th which I'm okay with because I have been having so many appointments lately. My neurologist is this Thursday although he doesn't have my test results.

Thank you for your kind words

Another thing my husband mentioned is that oxygen would be pointless unless they get my heart rate under control. 204 beats per minute isn't even pumping blood. That is just from brisk walking so I imagine I'm probably 250ish going up the stairs. It's very insane to listen to my heart beat after going up the stairs. My husband thinks that the tachycardia might even be causing the oxygen drops but I don't even know. Sometimes my o2 drops first and then my heart beat goes up afterwards like 2 minutes later and sometimes it's the opposite. Maybe they could fix them at the same time? Either way they really need to do something about the tachycardia or else there is no point getting oxygen because I'm going to continue getting really sick.

I'm not crazy right? This seems abnormal to other people to right? The people doing the test certainly thought it was abnormal but I'm scared I'll go to the cardiologist and have him be like nope that seems pretty normal to me.

@sue1234 Oh I really hope you're right. Although I didn't get the results I want or get pushed enough to have a seizure it really did show the dysautonomia activity that my heart rate was being so ridiculous and so was my oxygen. I'm hoping this is enough for them to at least see how my body acts to just normal walking, not even strenuous activity. I never got to make it to the strenuous parts.

@gjensen I agree. Because my lack of oxygen is related to dysautonomia related stuff it's not as clear coat as it being under 88 for 5 minutes because it's not like my lungs or something. I will definitely be asking my doctors about appeals or if there is anything they can do to increase my oxygen and decrease my heart rate. Hopefully this gives them some kind of clue on what they need to be doing.

I agree with both of you. I really wish I had something in the meantime while they were figuring everything out though. Especially with how long they take to do everything and figure stuff out I don't want to be left completely defenseless to low oxygen and seizures while they figure everything out. It's dangerous. I do agree that it is just a temp fix though and they need to figure out what's going on.

Wow I didn't know about the appeal process's. I will definitely ask my cardiologist about that. They have at least documented it going down to 82 the only problem is it doesn't stay there if they make me stop whatever I was doing to make me sick for the required 5 minutes. I also have pictures of it at lower numbers and they know I have seizures. I will see if my cardiologist can do that.

First off I was suppose to have a stress echo but insurance wouldn't cover that so I had to do a stress test and an echo separately in order for them to cover it.

I lasted 3 minutes. They didn't even get to ramp me up. She was told to only have it go to 60% my max heart rate but I was already there before I started the test because as soon as I stood up my heart was 130. The women really tried to make me go as long as she could but after 3 minutes my heart rate was 204 (110% my max heart rate) and my oxygen was 82 and she had to make me get off. This was just from slow walking. I layed down and after a minute my oxygen started to climb up again. Therefore, I didn't meet my insurances requirement of having my oxygen be under 88 for 5 minutes in order for them to pay for oxygen in a clinical setting. The lady thought it was ridiculous that my insurance was doing that (as do my doctors) and said that she has never seen anyone like me in the 12 years she's done that.

I don't know what to do. I won't be able to meet their requirement in a clinical setting because the doctors freak out with reason. They don't like people getting that sick or having peoples numbers look like that. I thought of asking my pulmonologist if I use one of those o2 meters they use for sleep apnea but use it during the day so It's able to show what I go through in a day since I can't do it in a clinical setting because they freak out. I don't even wanna do that though. I'm tired of making myself sick. Something needs to be done. My husband is even looking at the price of supplemental oxygen and seeing if it's anywhere affordable (let me know if you know any affordable places for it.) I also had a seizure this morning from lack of oxygen. Nothing new there.

What do you think of my results? I won't see the cardiologist until the 30th.

It's suspected that the reason creatine helps me so much is because I have Mitochondrial Disease because creatine is part of the Mito cocktail. Ty. My test is in 2 hours and I'm sooooo nervous. I had a seizure this morning at 5 am so I'm hoping my body can pull that crap during the test and get caught.

@spinner They already checked me for sleep apnea although I haven't gotten the results back yet. I sleep on my side. So the muscles could be too tired to function? Would that be why it happens when I'm doing physical activity?

@racer Thank you. I'm scheduled for Vanderbilt in February but I wish it wasn't so far away. My new insurance also doesn't cover it so I'm not quite sure what I'm going to do.

@BeforeTheMorning Thank you:)

@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.

@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.

@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

Yes, the seizures are from hypoxia. I had all of my tests at the pulmonologists come back normal and I really believe it is the dysautonomia causing the low oxygen. It makes since considering the autonomic nervous system controls respiration too. I know what you mean about the co-condition part. It's really hard when listening to someone trying to figure out if there symptom is from dysautonomia or the thing that caused the dysautonomia. It's all so confusing and individual. Too bad we all couldn't get a normal condition that people have heard of and know how to treat.

@Raisin yes, that is exactly what happens to me. When the feeling of not getting enough oxygen gets too intense and lasts for a few minutes I will turn blue and have a seizure. It's a very awful feeling and it's awful for my body. Mine doesn't seem to be caused by blood pooling although that happening does make me dizzy but the cause of all but 1 of my seizures (1 of them I was just laying in bed awake and all of a sudden couldn't get enough oxygen which makes no sense considering how most of my seizures are. That was also a double seizure.) were caused from the stairs because the stairs make it harder for me to get oxygen more than other activities I have to do. I get sick from other thing and lose oxygen, but nothing like the stairs. Everyone with dysautonomia knows the stairs are evil though lol.

@yogini no it's def. part of the dysautonomia. I don't go to the mountains or on planes or anywhere where there is less oxygen because I have so much trouble as it is.

@yogini My blood pressure is one of the few things that are pretty okay for me. It use to be really messed up but around the time I started working out and going to the chiropractor it became somewhat normal, not normal normal, but not dysautonomia level. If that makes sense. I heard of people using like adderall and stuff for dysautonomia in some cases and having it help, and like you said in some cases it makes it worse. Everyone's individual. No it is clearly helping my oxygen as well as everything else because it kept my oxygen from dipping into the low 80's.

@gjensen mines not really like the effect from benzo's on the respiratory system or anything like that. When I do physical activity it goes low. All but one of my seizures were after going up or down stairs. I hope you figure out what's going on though. I understand the frustrating with their being something wrong with your body and having to try to prove it.

@AllAboutPeace Wow. That's very interesting. Glad that your son is okay now. The funny thing is I have a high resting heart rate so that's part of the reason people are scared to give me stimulants but it makes me feel better and I can't explain it. I just know that when I have stimulants it makes all of my symptoms much better both physically and on tests (like how it keeps my oxygen in the 90's instead of going in the 70's and 80's.) Maybe if they figure out why stimulants work for me they can figure out more of what's going on

Sorry, I didn't know what to name the title. I figured out on my own why my oxygen is messed up and causing seizures, dysautonomia. That sounds really silly since I'm on this forum, but I kept thinking that something else was causing my oxygen to be messed up and I didn't know why. Then I remembered that my dysautonomia is a lot better when I take stimulants, and I realized that even my breathing is much better. I was doing better when they had me on adderall but they stopped me because they were too scared it would make me worse despite it making me feel better. I took a stimulant the other day and checked my oxygen in the gym and went on the machine that made me the sickest and the lowest my oxygen dropped was 93 and it didn't stay there and was averaging 95. That's incredible considering it likes to drop to the very low 80's when I do physical activity normally. I realized that my oxygen problem had to be dysautonomia related too.

Obviously respiration is a part of the autonomic nervous system but I don't hear too many people on here complain about having problems with it. Do you guys have problems with respiration? If that's the case will oxygen still help me if it is just dysautonomia?

Does anyone know the basis behind why stimulants work for people with dysautonoma? I don't have blood pressure problems and it works for most of my dysautonomia symptoms. I know it activates the sympathetic nervous system. Is that why?

Oh wow ty. That was nice of you.

Amazon is a good place to get cooling vests. I agree with what everyone has already stated here. I'm going to a carnival next weekend and am doing a lot of these things. I plan on riding the rides though and don't want to keep taking off a cooling vest so I am substituting that with a chilly towel and cooling headband and am hoping that will be enough.

@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.

@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.

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.

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.

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.

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.

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.