trappedat20

I'm actually only doing it twice a week now but it seems like it bothers me regardless. My doctor won't move me up and I wish I didn't have to wait until May 2nd. It's really hard to figure out if the problem during these episodes is that I'm not getting enough oxygen because of dysautonomia doing crazy things to my heart, or if I'm not using oxygen efficiently because of a problem with the mitochondria. This has become a big game of trying to figure out what's the dysautonomia and what's the primary condition. I noticed I have problems getting enough oxygen even without my heart being crazy though so I'm unsure. I def want to look into this mitochondria thing though. I'm debating staying with my dad for a week in Massachusetts and seeing a mito specialist there. There aren't any here. I want to feel really certain that's what it is though before I have my husband take off work for a few days and drive all the way there from Tennessee. I'm not sure if Bluecrossblueshield covers you in different states but it seems like other people here see specialists in different states.

Well I came extremely close to having a seizure at the gym today. I did one set and I felt like all of the oxygen had vanished from my body. My husband saw me turning blue and he came over to see me (that's normally the point of no return as far as the seizures go) but luckily I prayed the whole time and I wound up not having one but that's probably about the closest I've come to a seizure without having one. I was just praying over and over because I did not want to have a seizure there of all places. Normally I'm dumb and I test my luck but I knew better to have my husband help me to the car because the next set I would not be so lucky. I don't know what to do. For dysautonomia I'm supposed to stay conditioned but exercise is making me worse. I took a week off from working out because my husband is very iffy about me continuing and then I worked out yesterday and was a lot better during my workout because of it. Unfortunately I felt a lot worse today because of it and than after only 1 set almost had the seizure. Starting to think that exercise really is making me worse. I feel like this would be more closely related to Mitochondrial Disease than Dysautonomia since exercise is suppose to make positive improvements in dysautonomia patients. Really unsure what to do right now. My husband doesn't want me to workout anymore because of the possibility of mitochondrial disease but I don't want to stop and then have them say that I don't have it. I'm starting to think I really do have it though. I don't know what to do. I don't want to stop weightlifting and wind up with no muscle (it's not like I can progress though anyways. I keep getting weaker and weaker) but it's making me worse.

Oh wow that's interesting that it helped her. Yeah, I don't have a lot of money though. I do have a lot of time though because I'm so sick there's really nothing else I can do with my life After my recent trip to the gym I'm wondering if oxygen will even help me though. My husband thinks that when I have my seizures I wind up having way too much C02 in my body and I don't know how to lower that and have more oxygen instead.

I try to walk around the house since it's small and there are plenty of places to sit when I need to although for the most part I stay on my laptop all day because I'm too sick to do much although I go to the gym a few times a week (and it's extremely miserable and I get sick) to avoid deconditioning. I have just a basic wheelchair that cost about 100$ that we leave in the backseat although we rarely use it. I've only used my wheelchair a few times but it's great to have it when I need it. When in grocery stores we use the wheelchairs there and besides that and the Gym I rarely leave the house. I mainly use my wheelchair for places where I'd have to stand for more than 5-10 minutes which besides the grocery store we don't really go to places like that often, hence why we don't use my wheelchair often. If your parents won't buy you one now I suggest taking advantage of the wheelchairs in stores (lots of stores where there's lots of walking around have the motorized wheelchairs) so that at least that is easier.

Oh wow ty. I'll look into that.

Oh wow I looked that book up and it is super expensive. I doubt it's something you'll find in your local library too lol. Too bad. It looked interesting. Despite the price it still has amazing reviews though so it must be really good for people to pay 60$ for it and then give it 5 star reviews. @LMG did it help you with anything else? I unfortunately think a lot of it is probably related to mitochondrial disease in my case so like Chaos said it probably wouldn't work for me. I'm kinda bummed because I don't mind walking around with tubes in my nostrils if I feel better lol.

@JuneFlower that's a good point. My main concern is I'm wondering if they search for the primary cause of the dysautonomia or not. I can't seem to find that anywhere

@LMG that's really interesting that it helped you at first but that it didn't help you after that.

@Chaos Oh wow thankyou. I love all of the info you give me on Mitochondrial Disease because it's so hard to find information on it. Hmm maybe I should really get my o2 checked then. If it appears normal then that's another thing that points to mitochondrial disease for me because there is obviously something wrong. I feel short of breath all of the time and the slightest activities make me feel like I can't breath and when it's really bad and I turn blue and stop breathing is normally when the seizures or passing out occurs. Would def. be interesting to find out. I appreciate all of your info on Mitochondrial Disease

@looneymom ty. I know, I feel so lucky that I live so close to it. It's funny that I moved here around the time I got sick. It's almost like I was suppose to move here. @JuneFlower I've felt very nervous about calling or emailing them because I feel like the they're so big and important or something. It sounds very silly when I write it down lol.

@momtogiuliana it said that the page was not found. I actually read that page but those are extremely expensive and I'm more interested in like a nasal cannula that I can wear most or all of the time for continued help. @gackedo no, we haven't had a chance because our stupid car had to get a tune up which took a good majority of our money right there. We do plan on getting it done though. @bigskyfam hmm it would be interesting to see if we feel better with continuous oxygen.

Has anyone tried it? I saw a potsie on tumblr who used it with success and I searched it on here although all of the threads on it are really old so I thought I'd start a new one. I feel like a lot of my symptoms are from low oxygen caused by other parts of my dysautonomia (like my heart racing way too fast) like the seizures and passing out are caused from low oxygen because of that and I know some of the symptoms when I feel short of breath have to be low oxygen. So does anyone know if using a continuous flow of oxygen through like a nasal cannula would be helpful? I'm not sure if I should bring it up to my doctor or not. I don't want to sound like an idiot or anything. My husband doesn't really see the benefit of it but it seems interesting to me so I would love to hear from more people who use nasal cannula's continuously or something and receive benefits from it.

@gjensen TY. It stinks it's so far away but I'm excited to finally have the referral. All but one of my doctors have dropped me so I'm excited to be around doctors who know what they are talking about.

Thank you Corina. Luckily last night I was pretty okay. I still got them but they weren't around bedtime so I was actually able to go to sleep and I felt relieved for the break.

I finally got my Vanderbilt referral. My appointment is February 5th 2015. It's really far away but from reading things on this site I knew I would have about a years wait. I have a few questions. 1.) It says my referring provider opted out on autonomic testing prior to my consultation and so the autonomic specialist wants to order testing for me after my consultation. I know that means I wont get to discuss the results face to face with them but is someone at least going to call or write me or something telling me my test result afterwards? 2.) It says date: 02/05/15. Time: 2:30pm. Long: 60 minutes. Dept: PHCLIN. Prv/Rsc: Robertson, DA*. Visit type: consultation. What does PHCLIN mean? Does that mean my doctor is Robertson and does anyone know if he's good? I assumed everyone at Vanderbilt is good but please tell me if you have any experience with him? 3.)There's a piece of paper that says the testing consists of the following : postural blood pressure and heart rate, deep breathing, and valsava. Please tell me that's not all that is going to be done? It says they will figure out what testing I need after my consultation so is this just a general piece of paper and if I need other tests they will have them done? I don't want to be seen as just a general patient. I'm waiting 10 months in the hope they look at my individual case and tell me what I need done. 4.) Perhaps my biggest question is will they try to find out my primary cause? I'm unsure of whether or not they do that or not. As of the moment I suspect Mitochondrial Disease but will they test for that or do they just do autonomic testing? This is a very big question I have. I'm unsure about holding off on getting any real answers for 10 months so I don't want to be disappointing thinking they will try to find my primary cause and not have them try. So if anyone has any information on that please let me know. I'm a little unsure what to expect really. I don't know how extensive their testing is. I don't know if they are going to do 3-4 autonomic testing procedures and be like you have dysautonomia, or if they will run extensive testing trying to find out my particular case of dysautonomia and check for common underlying conditions for dysautonomia. Please share your experience. Thankyou.

I'm not even sure what they are anymore. I don't think it's myoclonus anymore. They kind of remind of my husband of tics because sometimes when they happen it makes me shout out or my voice suddenly becomes a lot louder and stuff like that (like with tics) but at the same time sometimes they remind my husband of the seizures because my body will convulse and my hands clench up into fists like when I have the seizures only I'm not actually having a seizure and I'm aware the whole time. I have no idea what this even is. I'm wondering if they aren't two seperate things. It kept me up ALL last night and I was crying terribly. I was so uncomfortable I was actually repeating that I wish I wasn't alive anymore so I didn't have to deal with all of this and I was crying and begging my husband to somehow make it all go away. It was pitiful. Last night was really bad. It was worse than it had ever been. I kept convulsing for hours without my control and my body felt so uncomfortable and I couldn't make it go away. My husband gave me a valium and I fell asleep but apparently I was still convulsing and twitching in my sleep because he woke me up an hour later because I was keeping him up. I don't even have any idea what this is anymore and my neurologist can't move me up so I have to wait until May 2nd and I feel like I'm going to absolutely insane. I can't deal with this anymore. I get some lighter versions sometimes during the day but nighttime is **** and I now dread it and I need something to make it stop because all I do is cry all night and wish I wasn't me anymore now.

@IceLizard thankyou. Yeah, it hasn't really helped much with most of my dysautonomia symptoms but the funny thing is it's def. helping me. I took it for 6 days and was fine and than ran out and got really sick again. I started taking it again and have been taking it for 1.5 almost 2 weeks with no seizures or passing out. That doesn't seem like a coincidence. Before taking creatine I would have to take 4 breaks to go up or down the stairs in order to avoid seizures and I still felt pretty crappy about it. Yesterday I was wearing my holter montitor and I really wanted it to catch something so that they could figure something out. I was able to even jog up or down the stairs though without getting sick. By nightime (when I'm usually my worst) nothing really crazy had happened with my heart all day and I was worried it would look like I'm faking it after explaining in the hospital how crazy my heart would go and breathing going up the stairs so I ran up the stairs then done and then up again so I felt sick enough and so I layed down but it actually passed in 2 minutes and I did not have a seizure or pass out. I'm sure if I ran up/down he stairs one or two more times I would have had a seizure or passed out but thats def. a lot more than I could normally do. Before I would have to take 4 breaks on the stairs in order to avoid them. It's helping me in the gym too because the last time two times I went to the gym I was actually able to improve a slight amount because I didn't get nearly as sick as I normally do. After the first time I had it I started craving it often in the day although now I don't crave it as often anymore. It's like it was pica but for creatine powder or something. I feel very weird telling people that but it's the truth. It's like a sandy texture with no real taste and most people mix it with water but I put it in a bottlecap and lick it. I know it's very very strange lol. My husband picks on me for it because who does that but I swear it's like my body's way of telling me I need it. That seems to be the extent that the creatine helped but those seizures were horrible and so even controlling that is enough to make me never want to let myself run out ever again. I'm thinking of taking other supplements from the mito cocktail and seeing if I can control more of my symptoms. Good luck. I really hope it helps you! It took a few days for me to feel it working but the fact I craved it after trying it once made me realize something was wrong and that I should keep taking it. It was a happy mistake I found it. I took it to help with my muscle weakness but it also helped me seizures and syncope episodes.

I'm not sure if I should try to take the mito cocktail now and see how it helps or if I should not take anything so that it doesn't effect any tests they might do. I don't want to stop taking creatine though as I don't want my seizures to come back. They are working on a referral to Vanderbilt for me but I know that's going to take about a year to get in even if they do something for this I don't want to wait a year. Yeah, I heard about that virus. Thanks good idea. I will call geneticists around here and maybe even look at a different part of Vanderbilt and see what they say.

@looneymom that is so interesting because my liver enzymes in the hospital were sky high. They should not have been that high from stuff I was taking unless my liver wasn't detoxing properly or handling things properly. It feels like anything I take overloads my liver. I don't drink or do drugs or smoke or anything either and my liver is perfectly fine. I am going to look into taking that supplement thankyou. What is the 23andme testing for? I've noticed several people on this forum mention it. I thought of using that a few years ago to try to search out my biological father but it was too expensive and it would have only worked if him or a family member had an account. Is there other things it works for too? From what I hear you can be tested for mito and have it come back negative and still have it. Tests only determine certain types of mitochondrial disease and they don't have a test for everytype or something like that. Oh wow L-Arginine makes creatine? That's very interesting because I did not need a test to know I was very low creatine.. I mean I crave creatine powder which is extremely strange and now that I have been taking it I have an easier time going up/down the stairs and my seizures and fainting magically disappeared. I'm sure if I really pushed myself I'd have seizures and pass out but normal daily activity doesn't cause them anymore. I can go up or down the stairs once and be fine. I'm sure if I sat there and went up/down the stairs over and over I'd have a seizure but before all it took was one time and bam seizure. I did find that very informative and helpful thankyou. My husband had me take citruline which converts to L-Arginine once several months ago before the gym and I felt a lot better that day and was able to workout better but I never took it again or payed much attention. Looks like I should go back to taking it.TY. @Chaos thankyou for all of your information. Yes,I'm definitely going to look into it. Do you think a regular geneticist would help? There's no mito specialists in my area and my husband and I can't travel to see someone at the moment. There's a few geneticists in my area and I'm wondering if they would know enough to at least order testing and stuff.

Wow, maybe I should try something like that. Normally when someone suggests stress or anxiety I'm ready to rip their heads off but even if I don't feel anxious it doesn't mean my body might not be stressed from being so sick all of the time. Stress and anxiety does feel relative to the "nervous system." Lol it seemed punny when I said it in my head but when I wrote it down it felt lame lol. I think I might try to relax more. It can't really harm me.

@Chaos Oh wow 20% of people with CFS have problems with their mitochondria. That's very interesting because I thought that even though I had dysautonomia it would be so rare that it wouldn't be worth looking into. A lot of CFS overlaps with Dysautonomia too and I tend to have all of the stuff for CFS but since I have dysautonomia I don't really pay any attention to it. Even before I had dysautonomia I've always had a lot of problems with being fatigued. I never felt well rested and was always exhausted. Even as a young adolescent when I should have had loads of energy I spent most of my time in my room reading and stuff because I never had the energy to go out and do physical stuff.My fatigue is wayyyy worse now but I always just assumed it was normal back then. Do you have any idea who I can see. I live right around Nashville, TN. I can't really seem to find any mito specialists who might take me on around here. I think I'd like to have this looked into further because why else would creatine help me with that if it wasn't mitochondrial disease causing it? It just doesn't make sense. If it just helped my muscle weakness that would make sense because it helps everyone with muscle production but creatine deficiency is part of mitochondrial disease and it's part of the cocktail of vitamins they want you to take. The fact I'm not having seizures because of it is really strange and the fact I crave it.

Okay I have been taking creatine for about a week and half and have not had ANY seizures or fainting episodes. My usual rate of seizures and fainting episodes is 3-4 times a week and I don't see how that's a coincidence. I also crave creatine slightly less now that I am taking it regularly although I still crave it. Again, how strange is that? I still feel just as sick for everything else, but I have a little bit of an easier time going up/down the stairs, my muscle weakness isn't as bad as usual although it's still pretty pathetic, and no seizures or fainting. I am really wondering if this is pointing to a mitochondrial disease. I know it's rare which is why I feel strange trying to figure out if I have it at this point. Since the creatine is helping my husband and I are thinking of taking some more of the vitamins they use to treat it and see if I get even more results. I'm hesitant to to bring this up to a doctor unless I feel almost certain I have it. Thoughts?

@Alison is it a good book? what does it talk about? None of the doctors are helping me either and idk what to do right now. @TCP i'm kinda disappointed how common it is among this community now. I kinda thought maybe this was a hint towards my primary condition but it looks like even though it's not written down as a symptom a lot of people here have it. I guess what your saying makes sense. I can always try something like that as I should be doing something to calm my mind and keep stress away anyways.

Yesterday mine started up in the day time too. So now it seems to occur more frequently and in spurts throughout the day rather than all at once. I don't think it's related to anxiety since I don't have any anxiety. Alison, my husband actually thinks it's actually tics so it's funny you say that. I also don't think it's related to restless leg syndrome as this has started up in the day time too now. Sorry if my responses haven't been as detailed as they normally are. I'm at a point where I almost feel like giving up on searching for the primary cause. Doctors don't seem to even be looking and I'm tired of trying to find it myself when there are endless possiblities. I just wish they would stop being so scared to prescribe me stuff and at least try to deal with my symptoms. I don't know how everyone whose had this for years deals. I've been sick for 1 year and I feel like I'm going absolutely insane and I can't take it anymore.

For some reason mine look like I'm faking it I tried to record them last night and it looks like I could be doing it myself so I don't want to show the doctor. I'm obviously not though because I hate them so much. They've left me in tears almost every night since they started. I can't be as close to my husband anymore because I've kicked him several times and now we have to keep our distance when they start Mine don't really look like the girls in that video anymore. Mine are a lot more abrupt and harsh. It looks more like I'm slamming my leg down in a weird twitch like motion. It doesn't appear as rhythmic as it did the first 2 nights either. Now I'll sometimes have them for a certain amount of time straight and than I'll have a break and than it starts up again. For some reason twice it made me blurt stuff out too. Only twice though but it made me say ow one time even though I wasn't in pain and it made me just make a noise one time.