trappedat20

Omg lol and then I can say I ate the brownie for my health and feel no guilt. Perfect idea lol.

I now have a photo of it at 81. It was 79 but it took a few minutes to get a camera so it already started to raise. I showed him a picture at 86 before though. Do you think if I have a few photos showing it drops low with the knowledge that I also have seizures that that will be enough to get on oxygen or do I need to have something go wrong in his office on a test? I'm so scared that the pulmonary function test will be fine (it prob will) and then I won't get the oxygen that I really need

Oh sounds good. Thank you. I hope they have a stair master. That would be amazing lol.

Haha I like your last line. I'm glad at least in this community it's normal How do you deal with it? I'm trying to figure out how I'm going to keep cool this summer on outings and I don't want to throw myself in the other direction and start shivering.

@IceLizard Would the cardiologist do that? That sounds like the perfect test for me. @Raisin haha I wish I could pull that kind of stuff off. My seizures are so rare now (every few weeks is considered rare to me) that I'd have to do something like that for weeks before it even caught one. I don't even have a video camera either. Good ideas though. I know. He's been like that since the beginning. He's like that if I'm having a nightmare or something too. It's crazy. He always knows when something is wrong.

My body's ability to regulate temperature is such a joke. I ate a small ice cream in a normal time frame and then shivered violently with my teeth chattering under 2 blankets for the next hour. Like how does that even happen? You hear of people becoming cold after eating ice cream if they eat it too fast or something but they don't sit there shivering violently with their teeth chattering under 2 blankets for the next hour. Does this type of stuff happen to anyone else? I was hoping that things like ice cream would help me cool down this summer since I have such problems with heat in the summer, but apparently it looks like it will just throw me at the other extreme.

@Becia what I want more than anything is for someone to take me up some stairs already. Everything else may or may not make me sick depending on how sick I am that day but either way it's usually not enough to merrit notice. If someone would just take me up stairs with monitors they would see though. I unfortunately can't ever get as far as to do that but I really wish I could because then they'd really see how bad things get. I'm hoping the cardiologist can do some kind of stress test like that though hopefully. @Dadofpotsson Yes, I remember us conversing a lot about this before and you telling me about anoxic seizures and making me feel a lot more normal because until it happened I didn't even know you could have seizures from lack of oxygen. They said that my holter monitor didn't show any arrhythmia's but I also slept most of the day and didn't do anything that made me sick either. His sound very similar to mine every time you describe it. I don't think my blood pressure drops though. My blood pressure use to be crazy but stabilized around January and is now okay. Yeah mine is normally climbing stairs or fast movements but I have gotten them one time just laying down doing nothing which was really strange for me. @Degenesis My problem isn't really just standing up though. It's one thing to stand up, it's another to unhook myself from iv's and stuff and walk over to the stairs and somehow grab equipment for myself to monitor it all. It's not as simple as standing up and walking around a room for me. I really, really want someone to take me on the stairs already. Nobody will. I'm hoping I can convince the cardiologist to do a stress test that involves stairs or something. @Raisin We have been trying to do something like that. The neurologist keeps telling us to but every time it happens it's a surprise because my o2 levels always drop low and I always feel really sick doing activities, it's just whether or not it turns into a seizure. I don't know whether or not the lack of oxygen will turn into a seizure until I come out of the seizure and ask my husband if I had one because I spend the whole time my o2 is really low praying I don't have a seizure and making sure I am in a safe place and trying to bring my o2 up but sometimes my 02 is too low for too long and the seizure is inevitable. Sometimes it is in the middle of the night too and it's completely dark and my husband is asleep and I'm coming upstairs from going to the bathroom. That is what happened Sunday. I'm lucky that my husband who sleeps through everything somehow instinctively wakes up when I'm going to have a seizure. The most we can normally do though is make sure I'm in a safe place in enough time. I would really like to witness my seizures for myself. Especially for those times where negative tests make me question if I really am just a nutcase so I can look back at it and say no, something really is wrong.

Good luck! Prayers heading your way. I hope it all works out for you.

They have an IV in my arm and I'm in a hospital gown and not allowed to even get up to pee without having someone help me.

I've tried before at the hospital and at testing and nobody ever lets me go upstairs or anything during testing. I have a cardiologist soon though so I'm hoping they'll do a stress test.

@Katybug I've only stopped breathing during seizures twice and it was the two times that I had back to back seizures. Those are the worst ones and the scariest ones because those are the ones I really worry about something bad happening because I go longer without oxygen then when I just have 1 seizure. Besides that I don't stop breathing and the seizures happen first. I always get that horrible lack of oxygen feel everytime I do things, but it doesn't always turn into seizures unless the drop in oxygen is for too long or is too much. Yes, my neurologist seems to know a lot about seizures. He seems a bit more focused on doing more eeg's though which I think is stupid since we already did an eeg and ruled out epilepsy and determined it's from lack of oxygen. Instead of doing anything himself though he just referred me to a pulmonologist. I'm not sure how much the pulmonologist knows about seizures but he seems to know a little bit about dysautonomia. He knows a lot less than he thinks he does though. He thinks dysautonomia is all about the blood pressure and when my blood pressure was okay acted like I didn't have it. My blood pressure use to be unstable but is now stable. My heart rate has crazy reactions to normal things though and I have all of the other symptoms of dysautonomia. He acted like because my blood pressure was okay I didn't have it. Yeah, I know everyone keeps saying that about the specialists. I guess it's just hard to keep doing it and not getting anywhere. You're right about not knowing if it will help. I just feel like we can't keep doing nothing. I feel like this is serious and nobody's looking into it too much or talking about treatment for the lack of oxygen. @Degenesis Yes, I have a neurologist. No, I don't have wheezing nor do I have any other signs of asthma or anything like that. The pulmonologist didn't think I had anything else either and just wrote down hypoxia and started testing. The first time I knew I had a seizure (I was having seizures before this time but never knew because nobody ever saw so I just knew I felt really sick and lost consciousness assuming I passed out) my husband took me to the ER and they did an MRI and a Catscan and stuff and an EEG but because of the way I have my seizures we knew they were from lack of oxygen and I got to keep the same neurologist when I left the hospital. Nope, I live in the USA. I'm on neurontin for nerve pain and twitching that is also supposively suppose to work for seizures and taking creatine has lessened my seizures from 3-4 times a week to every few weeks now. I'm still getting that drop in oxygen frequently throughout the day when I do things though which means I'm still at risk for seizures. Nobody is giving me anything for the drop in o2. We have not been able to check anything during the seizures. I feel so sick that I don't like to be touched or have things around me because I feel extremely claustrophobic due to the lack of oxygen. My husband normally waits near me for it to end but he knows better than to touch me or put things on me. No, I don't have any of the symptoms of that. I have what are called anoxic seizures. I feel the drop in oxygen where I feel extremely sick from lack of oxygen after doing something that is tasking to my body like going up the stairs (usually that is what it's from but not always) and then my husband says I turn blue, start snorting, go very still and start clutching my hand and I'll have smaller jerks. @IceLizard Luckily, they usually last a minute although two times I have had back to back seizures without even enough time for me to come back to consciousness and so those are the more dangerous times where I'm out for about 2 minutes. My husband knows CPR as does my brother in law and have been instructed to do CPR if I don't come back soon enough and to call someone. The thing is I've been to the hospital and they never do anything about it. It's so frustrating because I'm okay by the time I get there. I still feel really horrible but I'm back to consciousness, and all of my levels are back up to where they need to be. Yay it said " Arterial oxygen saturation is greater than 88% when you are resting but becomes less than or equal to 88% when you are exercising or sleeping." Mine is normal during for the most part but whenever I do anything tasking to my body like go up stairs or sometimes for no reason it likes to drop to the low 80's.

Because of the creatine my seizures are less frequent but today I had two. They are very scary and I always feel really sick after them. Nobody seems to be taking this serious though and I'm very angry about this. My next pulmonologist appointment is June 16th and I'm so scared that I'll pass his pulmonary function test and then he won't give me oxygen. I passed the stupid 6 minute slow pace because it's just a 6 minute slow pace. I told them to take me up some stairs but they refused. They don't take notice unless your oxygen goes under 88 also and mines not going to do that from a little pace back and forth in a hallway. When I look up hypoxia it says severe symptoms include: seizures, not breathing, coma, and brain death. I have it so bad that I have seizures and have stopped breathing. Especially with the way my body likes to progress that means the other 2 could very well happen. I feel like I'm dying when it happens and turn blue and get extremely sick and start seizing. I also sometimes stop breathing. I'm not sure how it works but doesn't that mean that I could also go into a coma or something like that? My oxygen frequently drops from a normal 98/99 to 82-84 when I feel sick but I've caught it as low as 77 before. I've never caught it when I'm seizing but can you imagine how low those numbers must be? I feel like this is a serious situation and nobody is taking it serious enough. I'm sooo scared that that pulmonary function test will be okay. I'll probably start crying if it is. I don't know how much longer I can go without supplemental oxygen. My husband is coming with me to explain to the pulmonolgist my seizures. Is there any way that even if my tests come back normal we can convince them to prescribe me oxygen? Please help me figure out what to say. Also, will a nasal canulla help even if my baseline oxygen is a normal 98/99 but I have frequent low drops whenever I do activities or will an oxygen mask help better? I think I would really like a nasal canulla because I would love it if I never had the oxygen drop in the first place but I feel like it wouldn't work in my situation. I just really don't know what to do. The doctors are running all of these stupid tests and bouncing me between specialists but meanwhile I'm still really sick and nobody's dealing with it when I think it could very well turn into a serious situation. Am I being dramatic? I just really feel like not getting enough oxygen that you turn blue and have seizures could very easily turn into something bad. How do I know that I'm not slowly damaging my body with this either? Please give me advice on how I can talk to my pulmonologist to get supplemental oxygen. I really need it. Thankyou.

Ohh good ideas. I will have to get a spray bottle and a hand held fan. Thanks

My last post got me thinking that we should make a really long post filled with tips for staying cool in different situations this summer. I don't know about you but the heat is already killing me. IN THE CAR - If you have one of those automatic car starters you are so lucky and I'm so jealous of you. For the rest of us, turn the air conditioning on 5 minutes before you get in the car. It's worth it. Being in a hot car in the summer is the worst. - Those things that block the windows and keep the car from getting too hot. IN GENERAL - Drink lots of fluids. - A cooling vest - Popsicle's (okay I just think they're tasty and want an excuse to eat Popsicle's) - Dress appropriately for the weather. - A hat with a visor or an umbrella attached to your wheel chair for days outside might keep some of the sun away That's all of the tips I can think of off the top of my head, but add your tips and let's not let the heat keep us down this summer.

Loving the ideas guys! Thank you. I'm thinking of putting an umbrella on my wheelchair to keep the sun out of my face but figured that would be obnoxious. I'll still probably do it though lol. I actually have some of those wrist bands! I will give it a try thank you. I like the idea of putting some wet paper towels or cloths on too that way I can keep re-wetting it to make sure it stays cool. I love the cooling vest idea too and just looked it up and found one for 27$ There's also a cooling beanie. I'm really excited now guys. I don't care how dorky I look. It seems like I'm actually going to enjoy it this time. The state fair is in September too and if this works out I can try the state fair again

I did and the only ones are the ones at Vanderbilt since I live right outside of Nashville. So everyone here who is a specialist works at Vanderbilt. I have an appointment at Vanderbilt February 5th but I'm going to have to get rid of it because my insurance is different then the one they accepted and I'd have to pay out of pocket

I'll add that to my list then thanks.

Last September (a month before my official dysautonomia diagnosis but when I was still really sick) I went to the fair and it was ****. I felt like I was gonna die. I wore shorts and a tank but it was so hot and my body wasn't regulating temperature correctly and I felt soo sick. On top of that I was doing A LOT of walking around in the heat since I hadn't accepted using a wheelchair at this point. We went home a lot earlier than we planned and I only rode a few rides but the walk back to the car was so long and terrible I wanted to cry because I felt so sick. Going on the rides made me feel even worse although I think I would have been okay if I kept cool and was able to sit in a wheelchair right after. Things are a lot different now. I know what is going on. I have a wheelchair now so I can use a wheelchair to get around the carnival. I'm going to wear shorts and a tank too. Can you think of other things to keep me cool? Do those little fans that spray water really help? I will be drinking plenty of cold water also. Please give me all of the tips you can to survive the fair and to stay cool. Anything to help vertigo on rides? Again, that might not happen this year because I think that was all made way worse because of how hot I was (it was like 110 that day and I was not sweating and my face was a tomato and it was awful) and the amount of walking I had to do. I'm mainly interested in all of your ways to keep cool while in the hot sun at one of these events. If you have any other tips to survive the fair/carnival I would love to hear it though. Thanks guys. EDIT: Sorry guys it's June 23rd. My scatterbrained husband got the date wrong. I would still love to hear your suggestions for when it comes though so I have plenty of time to be super prepared. I'm trying to find a way to enjoy things I use to love but now need a lot of modifications for.

@Chaos I doubt it. They only like to do tests that make no sense I will ask about it thought whenever I go to the cardiologist @bellgirl doesn't seem too far out. Could it also cause extra neurological activity like twitching and stuff? It said one of the first signs is normally droopy eyelids though and my eyes aren't like that at all, would that rule me out? @looneymom Yes, I do some core muscle strengthening activities. I think that's the pulmonary function test that I'm getting on the 16th that I hope I fail so people take me seriously about the oxygen thing, and I'm hoping if I fail it means supplemental oxygen will help and then I will feel less dead lol. Yes, it makes complete sense. That probably has to do somewhat with why I'm not seizing much anymore. I've been taking loads of breaks. I use energy savers all of the time especially since I talked to the neurologist and a specialist in Atlanta about Mito. Whenever I feel out of breath I sit down immediately before my o2 drops too low. @TCP I know it's like if they send us to all of these tests they will feel better thinking that one of them will come back abnormal but they need to be stitching the pieces of the puzzle together.

@BeforeTheMorning It's mainly frustrating because I don't see the point in any of it. I don't see the point in getting any more tests done, except maybe the genetic test for Mitochondrial Disease. They already told me that's what they think is going on (after I brought it up) now after a simple blood test he isn't sure but he also admitted he doesn't know much about it. I'm just so tired of tests that are so pointless and then getting yelled at for not being able to make it to a million different tests and appointments in a short period of time. I don't feel good and my husband works a lot to be able to support us and yet they expect me to be able to go to so many tests. @bellgirl I thought Rheumatologists were for joints and arthritis and stuff? I know they're being cautious it's just frustrating because I know that the tests are pointless. They make me feel like a liar when the tests come back negative too. I'm really lucky I've had obvious things happen so that nobody can try to tell me it's in my head anymore. @Chaos I actually showed him a picture of my low o2 sats and he's like "you don't have to do that. I believe you" but he made me feel like a liar about the dysautonomia based off checking my blood pressure laying/sitting/standing. I really don't understand why my blood pressure use to be crazy around the time I got it and now it's normal after I started working out and visiting the chiropractor. The rest of my autonomic nervous system doesn't work though. My heart likes to go crazy, my respiration isn't right, I have problems with temperature, my blood rushes to my feet, I have all of the symptoms. It made me so mad to have him make me feel like a liar based off my blood pressure. I guess it's because I feel like I always have to prove I'm sick though because nothing is in your face obvious or something people can understand. I actually have not had a seizure in a long time I only had 2 which were back to back in the last 6 weeks, and it was about 3 1/2 weeks ago too. The creatine is still helping. I started taking about 1/3 of the Mito cocktail around the time I started taking Neurontin and I haven't really had twitching lately either, not sure which one of those helped. Hopefully they both stay gone lol. Yeah, they told me to video tape the seizures and twitching but they really haven't been happening lately (luckily.) Unfortunately, I'm still struggling with oxygen though and having to be very careful to avoid my o2 sats getting too low. My neurologist believes me about what's going on. It's the pulmonologist who is making me feel like I'm lying about the dysautonomia. I always feel like that whenever I tell someone I have dysautonomia and they check my blood pressure. @dkd I do have a referral to Vanderbilt but I'm going to have to eventually cancel it. I got the referral based off an insurance I was going to have but cancelled so If I did go I'd have to pay out of pocket and that would be ridiculous. I don't really see them helping me that much anyways at this point. Every time they see I have a referral to Vanderbilt they are like that's good so I'm scared everyone will be mad if I cancel it because it was so hard to get it. I don't know what they expect though, I can't make the money fairy come visit me lol. Good idea. I'll keep that in mind whenever I go to ask to see one of them. Hoping at least since I'm being forced to go to a cardiologist that they'll do a stress test. Nobody will take me up stairs for any of my tests. That's the biggest trigger for me so if they want to see me get sick they should take me up stairs. I can't even imagine how some of you guys feel. I've been doing this stuff for a year and I feel like I'm going crazy. I can't imagine doing it more (although I will be doing it for years probably.) I wish you luck in finding out what is going on. @looneymom Now that the seizures or twitches haven't really been showing up too much lately I think my most annoying symptom is the lack of oxygen. I can't do anything without feeling like I'm not getting enough oxygen and having to gasp for breath and feel sick. I bet the dizzyness is related to it also. I think that's my biggest problem as far as not being able to be physically active is that I feel like I can't get enough oxygen whenever I do things and have to sit down. The lack of oxygen makes my heart rate go crazy too, but the 02 drops come about a minute or two before my hr starts climbing so I think if the oxygen gets addressed it will make my heart rate more stable. The fatigue is awful too but I haven't tried to even worry about that yet with all of the other ugly symptoms. I'm seeing a pulmonologist now but he refused to use the 02 meter on stairs instead of a 6 minute slow walk. I still have to do a pulmonary function test so I'm hoping that comes back abnormal and he can give me oxygen or something to make me feel better. I've eliminated a lot of processed foods and have been trying to get lots of fruits and veggies in my diet. Exercise is odd. I'm not sure if it's helping or harming. At first it helped, but then it seemed like it was making me worse, but when I stopped I didn't feel much better so I keep doing weightlifting 2x a week and cardio whenever I can (cardio is really hard for me to do.)

That is so true. They like to blame the person with the condition when they don't know how to treat it or understand it that well. I should try not to take it personally. When they try to make me feel like a liar it's just them showing their incompetence on the subject matter.

My neurologist referred me to a pulmonologist because the o2 meter has proven useful in showing that sometimes my oxygen does tank. First he had me walk around for 6 minutes slowly and the lowest my o2 ever dropped was 93. That shows nothing though because I said more intense things like stairs cause it to drop. Then he had me doing a laying/sitting/standing b/p check. He thought dysautonomia had to do mainly with your b/p. So he had me lay down for 5 minutes, then sit for 10 (although it was suppose to be 5 but the nurse came back late) and then stand for 5 and my b/p was about the same, but kinda low all 3 times they said. Then he came back and made me feel like I was lying about the dysautonomia and it really made me mad. They didn't even do the test correctly for one and dysautonomia is not all about b/p. I even said I don't have POTS. Ugh. I have to go back in 3 weeks and wear an 02 meter while I sleep (idk why I never said I had trouble breathing in my sleep) and to do a pulmonary function test which I hope shows me what I need to be shown. Idk if oxygen will even help me though. I have a normal baseline (98/99) but it likes to drop into the low 80's several times a day from activities and sometimes for no reason so it's not like a canulla would help that. Also, the results of my blood tests came back at the neurologists and my carnitine, pyruvate levels, and lactic acid levels came back normal. I asked him about mitochondrial disease and he tested that and now he's acting like he did what he was suppose to do and no further evaluation is needed. He even admitted he knows very little about Mitochondrial Disease although we talked about doing a genetic swab test in the past. Those levels would show normal in most types of mitochondrial disease though and doesn't really say anything. They are all sending me to so many specialists and doing all types of tests that will come back normal. My neurologist wanted me to go to the pulmonologist and now the pulmonologist wanted me to come back AND he wants me to go to a cardiologist. I'm sure the cardiologist will want to send me somewhere too if there's a specialist that I haven't been to yet that is. My neurologist wants me to get a 72 hour EEG even though we already concluded the seizures from lack of oxygen and not epileptic and he wants me to get a echocardiogram even though my holter monitor was okay. They are also referring me to a physical therapist which I'm happy about now that I'm not going to the chiropractor anymore. I'm so angry. They are all trying to look at my symptoms individually instead of as a whole and are sending me to multiple specialists to do all of these tests that are going to come back normal.I have a month to do everything they want me to do too and I don't feel well enough to run around and do all of this in a month. They yelled at me last time I came back and didn't have all of my testing done too. I can't drive. My husband and brother in law both work and they expect me to have them find a way around their schedules for all of these tests that I don't even want? They need to do something that would explain everything. The only thing that explains everything is Mitochondrial Disease and I still think that's it. The only thing that has helped me at all is the fact I'm taking about 1/3 of the Mito cocktail. I really want to just say screw you to the doctors and stop going. I'm wasting time, money, energy, and putting up with peoples crap when they aren't even looking at the right stuff. Every test that comes back normal scares me and makes me think they're going to say it's all in my head or something. Of course it all comes back normal too because they don't look at the big picture. I'm just really frustrated and don't know what to do anymore. They are making me doubt everything and wonder if I even have dysautonomia now because of the way he said that to me even though I know there's plenty of people with dysautonomia with b/p that doesn't go out of control. It use to go out of control but stopped around the time I started exercising and going to the chiropractor.

That's another reason I couldn't stick to it. I'm too sick to cook my own food and my husband is gone most of the time. That meant that pretty much my only option when he wasn't home was salad. After doing a little experiment I found out it was the CoQ10 that was making me feel a little better last week anyways though so I don't feel bad since the diet didn't even make me feel better. I do think I will benefit from eating lots of fruits and veggies though. Thinking about making smoothies so I can get even more in (and because the vegetables are a chore for me lol.)

Olive oil is good for you. It's the oils listed here that are bad for you http://authoritynutrition.com/are-vegetable-and-seed-oils-bad/ because of the high levels of omega 6's and how it keeps the body in a state of inflammation. Only the strictest Paleo follow the no white potato thing. The rest of them allow potatoes. I love potatoes lol. I guess I'm mainly going to do trial and error and see how I feel. If eating healthy foods and avoiding processed foods doesn't help I'll try cutting something out and see if it helps me feel better.

I decided to quit Paleo. It is way too strict and is making me feel deprived and crazy. I have a history of eating disorders and don't like how deprived it's making me feel. There isn't even any evidence in it helping Mitochondrial Disease. It helps autoimmune disorders and diseases revolving around inflammation. Considering Mitochondrial Disease is genetic I feel like I'm making myself crazy for no reason. I would like to keep eating mass amounts of fruits and veggies to feed my cells though because I know antioxidants are beneficial to Mitochondrial Disease. I also want to keep milk, processed foods, and vegetable oils (don't use anyways) out of my diet with the exception of cheat meals every now and then (this is doable.) I'm still going to try to get all of the fruits and veggies Wahls protocol suggests and meat, but eliminating dairy, grains, legumes, and potatoes was making me crazy. As far as everything else goes it's going to be trial and error. Everyone with Mito is different and functions better on different diets. I will have to figure out what works for me.