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trappedat20

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Everything posted by trappedat20

  1. I'm trying to ease into Wahls protocol this week on top of the paleo (minus eating organically because we really can't afford it atm) by eating 3 cups of colorful fruits, 3 cups of greens, and 3 cups of sulfur rich vegetables (I'm using cauliflower because you can mold it into what you like and mashed cauliflower tastes delicious.) I'm not going to start the organ meat 1x a week or seaweed 1x a week for a while. This diet is going to be hard enough for me without forcing myself to stomach things I don't like. This week I'm doing 3 cups for the fruits and 2 cups of the greens and sulfur rich vegetables because I tried 3 cups at the beginning of last week and I think that's part of why I failed last week. 3 cups of lettuce is hard to stomach if you're not normally a salad person. I'm going to work up to 3 cups. Like people said oils and butters are a good way to add calories too. I'm using coconut oil because I heard good things about the MCTS in them helping with problems with the mitochondria so I figured i'd give it a shot. It adds an interesting flavor to things too. You should try cauliflower recipes its a great way to get your sulfur rich vegetables in and there's a lot of alternatives to things you're not aloud to normally have on Paleo or Wahls protocol. Cauliflower takes the taste of whatever you put in it or cook with it. It's like the tofu of vegetables lol.
  2. I'm starting the Paleo diet Monday so I love hearing this. I was inspired by Wahls Protocol by Terry Wahls after I saw her Minding My Mitochondria video. If you're worried about weightloss eat more almonds. 1/4 a cup contains 180 calories and they are Paleo/Wahls protocol approved. I was suppose to start this Monday but I realized I was going to have to ease into it because all of my favorite foods are foods that aren't allowed. So glad to hear you're getting results. I think it's a mixture of the fact that grains and dairy are inflammatory and that you're eating lots of wonderful fruits and veggies now that have helpful nutrients that feed your mitochondria. Good luck. Hopefully in several weeks I will have something nice to add about my diet (if I can stick to it long enough.)
  3. I just started the Paleo diet this week although this week is my experimentation week. I'm going to eat Paleo all day and then eat one of the no no foods at night to see which ones make me sick. So far processed food is a no go and too much sugar is a no go. I'm trying grains, starchy tubers (potatoes), legumes, dairy, and a gluten free grain in hopes that maybe if a grain is gluten free I can eat it. I'm trying to see which foods make me sick in case theres any chance I don't have to give them all up. Next week I'm going to start the Paleo/ Wahls Protocol perfectly. There's a video on youtube called Minding My Mitochondria about a woman who cured her MS with a version of Paleo called Wahls protocol. I heard fantastic stories about others experiencing success with it too. I think whether or not it helps you all depends on if you have a gluten sensitivity and what your primary condition is. You can always have a cheat meal a week too or every once in a while to make it easier for you. You might decide that you feel much better without the cheat meals and that the feeling after a cheat meal isn't worth it. It all depends. Good luck.
  4. Being tested for Mitochondrial Disease is also a genetic test that can be done.
  5. Thanks guys. Yeah I will bring this up to my neurologist because he thought the seizures were from my heart rate going too fast making me have a lack of oxygen but I'll show him that the lack of oxygen comes first. Hopefully they can just give me supplemental oxygen or something and I will feel lots better. Hopefully.
  6. So I went up a few stairs and my heart went to 179 and my oxygen dropped from 97 to 91. Hmm don't even understand this anymore. So I have noticed a drop several times when I feel out of breath. One time I felt like I might have a seizure and the oxygen was 84, but it wasn't so bad that I actually thought was going to. So I suspect it's probably around 80 when I do have seizures. Usually the drop in oxygen is from 99 or 98 to between 88-91 from just normal breathlessness, although for near seizures it drops more. Not too bad of a drop but it's not suppose to go below 92 right? Normal is suppose to be between 95-100. I'm trying to figure out if I would benefit from asking my doctor about oxygen therapy. Generally it seems to be in the normal range, but it does drop below that when I feel sick and sometimes even when I don't so I'm not sure if I should ask about oxygen therapy or if I'm thinking too much.
  7. We originally had health insurance with them but dropped it because the monthly payment was already high and it would have been a 9000$ deductible and it only covered 20% after that and there were a lot of things it didn't cover so there was no point. There wasn't anything better either because we can't afford more than 250 a month right now for health insurance. Yeah, I've had 2 doctors now tell me that it def seems like my mitochondria and to start treating it. I don't see the point in expensive and invasive tests that aren't even going to change the course of my treatment. I'd like to get more blood tests done and figure out some more deficiency's and stuff so I know more of what vitamins to add and I'd like to eventually get genetic testing done for the purpose of knowing if I will pass it on to my kids but besides that I don't see the point. I've gone down the list of all of the causes of dysautonomia and the only thing that makes sense is Mito. Literally everything makes sense for Mito. Even my elevated liver enzymes in the hospital that made no sense initially. How I felt growing up, what was going on around the time I got sick, my symptoms, what blood tests came back abnormal, what things help me feel better, what things make me feel worse, my family history ect. Everything leads to Mitochondrial Disease. It explains everything and is the only thing that even makes sense.
  8. So, for some reason it just told me it was 82 even though I felt fine and so I gave it to my brother in law and of course his read 99 (normal) than I put it back on and it was 77 but I felt fine and so I gave it back to him and it was 99 again and so I put it back on and it was 84 and than I went up the stairs and it was 91. I don't understand. I'm talking about the oxygen part btw. I didn't move it or anything or do anything wrong and when I give it to my brother in law he got normal readings but I feel like this can't be right because it makes no sense. I didn't even feel sick when it said that but when I did feel sick it stayed in the 90's. I don't understand this at all @IceLizard Yes, I think it will be interesting to see what it says when I turn blue. Yeah, def. seems like hypoxia. Although who even understands the exact mechanisms of my body any more lol.
  9. So, it's been mentioned a few times that I should get a pulse oximeter thing. It came in the mail today and I wore it around the house for a few minutes and then decided to go up a few stairs and felt sick so I went back down those steps (only 3) and layed down at the bottom of the stairs until I felt my oxygen come back. My brother in law came over and after about 1-2 minutes AFTER I layed down my heart started to slowly climb to 190. So the lack of oxygen def. does come before the heart rate increase. Granted, I wasn't very sick and this wasn't like when I have my seizures and I turn blue and I will do this again when that happens so I know for sure what happens to my body during the seizures, but I still though it was an interesting find. The display Sp02 barely dropped. It went from 98 to 96. Which means the lack of oxygen is related to the Mitochondrial Disease and although my body has the oxygen it's not using it properly, so I wouldn't benefit from oxygen therapy It would be extremely interesting to check this when my face is blue and I'm seizing and everything though but I have a feeling it will still stay above 90. EDIT: So, for some reason it just told me it was 82 even though I felt fine and so I gave it to my brother in law and of course his read 99 (normal) than I put it back on and it was 77 but I felt fine and so I gave it back to him and it was 99 again and so I put it back on and it was 84 and than I went up the stairs and it was 91. I don't understand I'm talking about the oxygen part btw. I didn't even feel sick when it said that but when I did feel sick it stayed in the 90's. I don't understand this at all EDIT 2: So I went up a few stairs and my heart went to 179 and my oxygen dropped from 97 to 91. Hmm don't even understand this anymore. EDIT 3: So I have noticed a drop several times when I feel out of breath. One time I felt like I might have a seizure and the oxygen was 84, but it wasn't so bad that I actually thought was going to. So I suspect it's probably around 80 when I do have seizures. Usually the drop in oxygen is from 99 or 98 to between 88-91 from just normal breathlessness, although for near seizures it drops more. Not too bad of a drop but it's not suppose to go below 92 right? Normal is suppose to be between 95-100. I'm trying to figure out if I would benefit from asking my doctor about oxygen therapy. Generally it seems to be in the normal range, but it does drop below that when I feel sick and sometimes even when I don't so I'm not sure if I should ask about oxygen therapy or if I'm thinking too much.
  10. Oh gosh. I hope not. As much as I hate Mitochondrial Disease I hate finding out I have something but that it's caused by something else and it's like a long neverending chain of diagnoses I have to search for for the rest of my life. I don't think that's the problem in my case though.
  11. So, my husband called a Mito specialist in Atlanta and he basically said that with my symptoms, previous blood test results, and family history that he would treat it like Mitochondrial Disease regardless of what the tests say and he basically told me that I did have Mito. I knew I did anyways though. He charges 500$ for the appointment not to mention the money it would cost for the blood tests (we just cancelled our health insurance for a long list of reasons but basically it was stupid and wouldn't help us in emergency's anyways) and I don't really see the point in traveling to Atlanta and doing all of that if the treatment will be the same. I do want an official diagnosis for medical purposes though. Do you think I can get my regular doctor to diagnose me with Mito if I present all of the information to him? He's been pretty understanding in the past and I went up to him with all of my symptoms and told him I though I had dysautonomia my very first visit and he agreed. Do you think I'll be able to get a diagnosis without gene tests or a muscle biopsy? I also am unsure what to do as far as kids go. I'm turning 21 next month and I've never had kids but I've always wanted 4. I don't know if there's a gene test or something I can do to figure out if I will pass it down to my kids or not. I'm not sure if something like this http://www.courtagen.com/ will provide me with any answers as far as that goes. I'm not really sure what to expect from here on out. Seems like even if I went to a specialist unless I fit a subtype they wouldn't be able to help me out as far as that goes. There's so many bad things that can happen and I don't know how to know if they will or not. My husband has made me stop working out (it was making me so much worse) and we're slowly cutting back on everything to try to see which ones make the biggest difference and then we're going to slowly add in the Mito cocktail. I'm thinking of trying that heartrate thing I saw mentioned on this forum about having something that beeps once you hit a certain hr and you have to stop what your doing. I don't know. Please, anyone with any experience with it give me some advice. Also we're canceling my Vanderbilt trip in February. There's no point paying that outrageous bill and putting myself through those tests when it's more than just the dysautonomia now that's bugging me. I know what's causing the dysautonomia and it seems the mito symptoms are probably more disabling than the dysautonomia symptoms (granted I don't know what is the mito and what is the dysautonomia.) I guess my game plan is to take the Mito cocktail, slow my life down even more and stop myself from doing anything physically demanding, and rest a lot more. Also get some genetic tests to figure out what will happen as far as kids go. Anything else you guys think I should do? The mito forum is so empty and hasn't been active in a year so there is no point going there.
  12. @IceLizard Ik the heart rate use to be super high when I would have trouble breathing and have the seizure. Seems like now my heart rate can be fine though and I'll still have trouble breathing and have a seizure. We actually just ordered one last night finally lol. It should be here Thursday. I can't wait to use it so that I know more about what's going on with my body during those times where I get sick. Yeah, they definitely need to be investigating. @masumeh I don't have seizures run in my family. They already confirmed mine weren't epilepsy and were due to lack of oxygen and likely related to the dysautonomia. I had 2 seizures between January 2013 and May 2013 when I first started getting sick but before I was full blown sick. Then starting the beginning of March 2014 I started getting 3-4 a week, every week. Then I started taking creatine and noticed that my seizures have decreased a lot and this was my first seizure in 2 to 2.5 weeks. I've actually been worried about going into a coma. With all of my problem with oxygen I've been hoping it doesn't progress to that. That's crazy that you can go into short coma's like that. I'm going to look more into that because I didn't know that could happen. Ugh I know that feeling before a seizure. It's awful! It's probably worse than the actual seizure because at least I don't remember the seizure. The after effects of the seizures are horrible too because you don't feel right for several hours afterwards. I've had a lot of problems with oxygen lately and normally the reason I get them is because something causes me to have problems getting enough oxygen and if it gets too bad I will have a seizure from it. I normally turn blue before my seizures. I hope things work out for you too. I don't have to proof my house because when I get that feeling I quickly lie down and I don't jerk too much so I don't injure myself. I stop breathing during my seizures so my main concern is that it will progress enough so that I don't start breathing again on my own. Good luck with your seizures. Hope you get the answers you are looking for. @looneymom It seems like nothing helps anymore. Before it use to help to go carefully up/down the stairs and take 4 breaks but now i'm having so much problems with oxygen outside of things that increase my heart rate too that even at rest I'm at risk of a seizure. I'm only on creatine atm because I don't want to screw up any tests that I might have done for mito. I don't want a muscle biopsy as I know between the anasthesia and the pain I will be soooo sick and so I'm hoping to be tested for it without having to do that. I will tell them I'm on creatine so not to pay too much attention to my creatine levels but if I'm taking a whole bunch of stuff then it might really mess with the tests. I don't know how far I'm willing to go to get tested though. If all they are going to do is tell me to take OTC supplements and to have a slow paced life then I don't want to travel the country and pay lots of money and have lots of tests done for that. So, I'm not sure how far I'm willing to go yet. I'm hoping they can pick something up with simple blood tests so I don't have to go way out of my way for testing. Thanks, I just hope that they actually do something when my appointment comes up. I'm gonna start taking control and tell them that I think I have mito and depending on what my 02 meter says possibly ask aboutsupplemental oxygen. I don't want to just continue to run tests on me that I know will come back negative though. They are wasting time and I'm getting worse.
  13. The holter monitor did not catch a seizure. I only had it for 24 hours and of course my body decided to behave on that day because it doesn't like to get caught in the act. I did get a little sick one time wearing it, but no seizure. That's what I think they are. Ikr. They need to be looking into this further but instead they are trying to pull apart the symptoms and figure them out individually. If they find out the cause of the dysautonomia, they will find out what's causing everything else but they aren't even looking into the dysautonomia. Seems like everyone knows I have it but nobody is doing anything about it. instead they want to do liver tests, and heart tests (lots of heart tests) and blood tests for common things. I want to scream at them that my heart is fine and I'd appreciate if they checked something else already. My husband and I have discussed getting an 02 meter and are thinking of getting one today, but I'm worried if it's mitochondrial disease and my body has the oxygen but it's not using it efficienctly then there will be nothing I can do.
  14. So, during the past week or two I've noticed that I've felt that not enough oxygen feeling and feeling sick without my heart rate increasing. It made me wonder if it was a coincidence that my heart rate was extremely high when I had the seizures/felt sick usually or if maybe my oxygen being so low was causing my heart to speed up. This was confirmed last night. I was lying in bed with my husband not doing anything physical at all (not even rolling over) and all of a sudden I felt like I didn't have enough oxygen for no reason. I was physically breathing fine but it was like there was no oxygen there and I felt extremely sick. Not even a minute later I had 2 seizures. After the seizures I still felt extremely sick and felt that normal lack of oxygen feeling I get and my husband felt my heart rate and if anything it was low. He said it felt like it was 60. My neurologist said my seizures were caused by my heart inappropriately beating extremely fast for no reason and my body not getting enough oxygen because of it. Last night showed that that's obviously not the case though. Every seizure I've had before my heart was beating extremely fast but it was obviously coincidental. Either way we knew the seizures were caused by a lack of oxygen. The difference is the seizures aren't necessarily caused by my heart being crazy, and more from my body. This makes me lean towards mitochondrial disease even more. Like I said my breathing is fine but it's like my body doesn't know how to use the oxygen. I have no idea how to even try to prevent them now if I can get them while lying down doing nothing. This is my first seizure in about 2 to 2.5 weeks and I've gotten in close situations where I'd normally have a seizure but I didn't so the creatine is obviously helping considering I was having seizures 3-4 times a week. My neurologist is probably going to try to push me off on a pulmonary doctor when I tell him this, because he was trying to push me off on a cardiologist before. I'm soooo tired of all of my doctors looking at all of the pieces individually instead of looking at the big picture. Come May 2nd for my appointment I'm sticking up for myself and saying I'm done with the bs tests and testing me for things I don't have, look further into the cause of the dysautonomia and you'll find why I'm sick. If not then I'll find someone else. This is obviously getting more serious and my doctors are wasting time checking me for things I don't have because they are looking at my symptoms individually. It's like they are trying to force me to be a medical horse when I'm obviously a medical zebra and they have no idea how to handle that. Def. need to get testing for mitochondrial disease as it's starting to look more and more like the root cause.
  15. Thankyou for all of the information! I'm glad to know they test for the specific type.
  16. Thank you. No I haven't had any kind of testing done as far as testing my oxygen goes. Haven't had any kind of stress test done either. When I am at doctors offices and in the hospital they put that little o2 meter/ hr thing on my finger but it's always when I don't feel sick so I don't think that means anything if I feel fine when they do it. I can physically breathe fine, but I feel that I'm not getting enough oxygen which makes me breathe heavy whenever I'm having a lot of trouble. Does that make sense? Normally it's activities like stairs, walking/standing too much, exercise that do it but lately (the past 3 nights) I feel like I'm having trouble regardless. I've caught my face start to turn blue a few times yesterday for no reason and I was worried I was gonna have to go to the ER (still hoping I don't) because I was having trouble without even doing physical activity. I know they won't do anything for me there though. They never do. I haven't worked out because last time I went to the gym a week ago I almost had a seizure after 1 set and I've been having so much trouble with oxygen from doing nothing that I know I'll have a bad experience at the gym again. I feel like there are only so many times I can be lucky at the gym before I actually have a seizure and I came extremely close last time and I really don't know how I didn't have one. I haven't had a seizure in 2 weeks because of the creatine. I've come close 2-3 times but it didn't happen even though under those circumstances it normally always happens so the creatine has to be helping because when I started the first time and noticed it helped I wanted to see if it was a coincidence and stopped and then had a seizure but then I started taking it again and it's been about 2 weeks since I've had one which considering the norm for me is 3-4 seizures a week that has to mean it's working.
  17. Thank you Chaos. Yes, please do if you can. My brain just wants to soak up all of the information it can on Mitochondrial Disease. It's starting to feel like I don't know how it can not be it. If it turns out I don't have it I might even give up on my search for the primary cause for a little while. Update: Been having a lot of trouble with my breathing lately. Seems like everything makes me have trouble breathing now. I don't even need to be doing physical activity. Also looks like the trouble breathing/getting oxygen comes before the increase in heart rate. I previously thought I was having trouble getting enough oxygen because my heart speeds up too much, but now I think my heart speeds up too much because I'm not getting enough oxygen. I've noticed I've had trouble breathing without feeling an increased heart rate, but not the other way around. My husband says at this point this is more than just dysautonomia and that it looks like my primary condition is starting to rear it's ugly head.
  18. Yep, my mom doesn't understand why I can't go to college online since I wouldn't be standing but it's because my brain fog is so bad I can't think. I've been wanting to work on my novel and read books and I can't because it's so bad. I found that when I was on the adderall it helped a lot with brain fog but they won't put me back on it because they are worried about my fast heart rates even though it makes me feel better.
  19. @IceLizard I think it's less about being able to finish school for me and more about being able to do the job I went to school for when I get out. I'm sure once I get my symptoms under control I would be able to go back to college, but I feel like I would struggle with doing the job when I get out. Does that make sense? There's really no jobs that even interest me anymore. All of the jobs I like happen to be on your feet jobs. Haha I guess I am super strange for sitting there and licking it lol. I hope it does something for you. I noticed it made it a lot easier for me to go up/down the stairs without having a seizure. I can obviously still have seizures from other things like pushing myself too hard in the gym but luckily that hasn't happened yet. The stairs use to be my biggest trigger for seizures and it made it so that I didn't have to pause 4 times to get up/down the stairs in order to not have a seizure. If I'm an idiot and push myself too hard with workouts and stuff I will probably still have a seizure (i've come close for this very reason but it hasn't happened yet fortunately) but I'm not getting seizures from basic things like making the bed and going up or down the stairs. It's part of the mito cocktail so it would be interesting if it helps you. Thankyou. I'm hoping you are able to add more people and make it a business like you want but don't push yourself too hard. Good luck.
  20. @IceLizard I got sick in college too. I only was able to do one semester in college and then took a semester off because I decided to move back with my mom last minute in college and during that semester off was when I got the job and I got the few symptoms that made me think something wasn't right, but I was too scared to say anything cause I was at my moms and she would have told me it was in my head. The beginning of summer I moved to Tennessee to live with my then fiance, now husband, and I went downhill pretty fast. I was practically on bed rest all summer and they didn't know what was wrong with me. I had planned on going back to school Spring semester (during this current semester) but come fall I never registered because I just got sicker and sicker. I can't imagine what would have happened to me had I stayed with my mother though because she would have forced me to keep my job and to stay in college and would have told me it was all in my head. I'm so glad I'm with someone who understands me so well and understands the illness and is my number one supporter. I know how you feel about wanting to start something up but at the same time being scared of taking on too much. I have yet to be in a period of remission and I don't think I ever will be. It seems like mine is just going to progressively get worse, but if I ever did have a period of remission I would be terrified of going back to school and trying to get a real job knowing that I could get sick again or get too sick again and not be able to do it and then I would have wasted my time and money. I've finally accepted that I'm never going to be able to go back to college or get a real job. My hope is that we can get my symptoms under control enough so that I can be a stay at home mom/home maker (oh and actually be able to have kids lol) and since I'm a writer that my symptoms are under control enough that my brain fog isn't so awful I can't even write. I want to start up a blog/site about chronic illness and trying to cope with it but my brain fog and fatigue have been so awful that it's not working out so well. Def. wait until you are ready so you don't push yourself further into the illness. There are online tutoring things where you can tutor people online for when you feel better if that would be something you're able to do? Just giving a suggestion. I'm not sure you're exact situation but sometimes brain fog and fatigue are enough to make even sitting down tasks feel impossible for me. Yeah for the most part the treatment seems to be the mito cocktail. I hear about certain drugs being used occasionally but it seems like for the most part it's the mito cocktail and a slower paced lifestyle. It's one of the causes of dysautonomia that is listed on websites so I think you could look into it and if you think you have it get tested for it. Mitochondrial disease never really shouted out to me until I took the creatine for muscle weakness and I was like oh wow this is helping me with the seizures and if you look up on the mito website about different types it lists creatine deficiency along with mitochondrial disease and a symptom of that is seizures. Creatine is also part of the mito cocktail and there is no reason it should help me with seizures unless I have a problem with my mitochondria. In normal people all it should do is help you in the gym. After my first taste I also noticed I had an extreme craving for creatine that is less now that I've been taking it consistently. That is extremely odd considering that creatine is like a sandy texture with no taste and most people mix it in water but I sit there and lick it out of the cap (I know embarrassing.) The creatine thing is what sent out a red flag to me that I need to look into mitochondrial disease. For the most part everything else seems like it could be, it could not be. Mitochondrial Disease has such a large list of problems it can cause so when you have something like dysautonomia it's really hard to tell if you have mitochondrial disease or not. I think the saying is when 3 or more systems are being effected look at mitochondrial disease. This is a quote I got from the DINET website regarding exercise "Some patients will experience an exacerbation of symptoms after exercise that may last for a day or more, especially if they suffer from mitochondrial disease. These patients should check with a physician before starting any exercise program." I've definitely noticed that I'm worse after I workout and even for the next few days which seems a little less like just being from dysautonomia to me. There are a few things that make me feel like it could be mito but like I said the biggest wake up call for me is the creatine because that's just not normal. Why would something that is part of the mito cocktail help me with my seizures and the stairs when in normal people it should only help with increasing strength/muscle in the gym? Maybe you could look further into it. http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934629 I don't think I would necessarily just test for it unless you look into it and really think you have it. It's hard to find a specialist that understands Mito (even harder than dysautonomia) and the testing is extensive and includes things like a muscle biopsy and I heard even then it can come back negative. It sounds like it could be mito though so I would def. look into it more. That website has a lot of information about symptoms and the mito cocktail and stuff. Maybe you can even try parts of the mito cocktail and see if it helps. Good luck!
  21. @Chaos you are like my mitochondrial disease guru lol. I always get excited when you reply because I feel like I'm going to learn something new lol. Please don't stop talking to me about it because I feel like you give me so much clarity and I trust what you have to say. It's funny because around the time I got sick I was actually pushing myself really hard. I had my first seizure January 8th 2013 and then between then and June 2013 weird symptoms kept happening but I still didn't consider myself sick nor did I know I would be disabled and very sick by June. During that time I was exercising obsessively (dancing several hours a day) and I had my first job where I was on my feet for 5 hours a day without sitting down. I know I would have gotten sick regardless but I wonder if all of the stress I put on my body is what triggered me to get sick then. I never felt quite right as a teenager but it was never anything that made me think oh my gosh something is def. wrong with me. I was always tired and fatigued but I never really looked into it. It wasn't anything like the debilitating fatigue I have now. I just felt like no matter how much I slept I always felt tired and like I didn't want to do much physical activity. It was something I could push through at the time to get what needed to be done done, although now I can't even push through it because of how bad it is and the seizures and tachycardia that accompany me trying to push through. I had to push through the fatigue to study because I wanted to keep my straight A's, and push through the fatigue to go to do workouts (which use to be normal workouts) because I wanted to be fit. As a result after I did this I spent the weekends "catching up" by just staying on my laptop or watching tv because I didn't have the energy to do anything else. I always just figured it was normal because I had one of those mothers who tried to normalize everything and tell me that I wanted to be sick if I ever complained of anything. I was also dizzy sometimes out of the blue. I've never been able to run. I don't know why but for some reason every time I would try to run or jog my heart would get too fast and I felt like I couldn't get oxygen and I'd feel dizzy. Like a light version of what I get now only it would only happen with running or jogging. I sometimes wonder if the signs were always there that something wasn't quite right with me but since they were so vague I brushed them off until the point I was so disabled and sick I couldn't brush it off. Does mitochondrial disease sometimes work like this? I always talk about the onset of the dysautonomia starting in January 2013 but not getting full blown until June 2013 but I wonder if my body slowly started breaking down long before then? My biological mother has MS which she got around the same 20/21ish (my age now) and I read that MS can be a form of mitochondrial disease. She's now 36 and although her MS is progressed all she has is MS and Depression but I read somewhere that MS is sometimes a form of mitochondrial disease. My half brother is developmentally delayed. He's 10 years old and he's smaller than everyone in his class and a little bit slower but it's not something that is obvious. Most people don't even know that he's developmentally delayed. My great, great grandmother had Alzheimer's when she passed. My biological grandmother died about a year ago and she was in her fiftys and it was due to some kind of problem with her heart. I don't know anything about my biological father but I heard only the maternal side matters anyways. I'm trying to find out if there is some kind of genetic thing going on. It seems like with my grandmother that could be chocked up to her lifestyle (she was a heavy smoker) and with my great grandmother it could have been age but I wonder if the problems with my biological mom and half brother could indicate that there is some kind of mitochondrial disease that runs in the family. It's so hard to say because neither of them have had any other problems emerge besides what I've mentioned and I thought with mitochondrial disease that multiple organ systems are always effected. I had some problems as a baby/toddler but it's hard to figure out what is from being in neglectful homes and what is medical. When I was a toddler I was in the hospital for several weeks because I had trouble gaining weight and keeping things down. I had very bad speech problems and was in speech therapy until I was 8. I wasn't potty trained until I was 5, which is pretty old. I have bad ADHD my whole life too but I don't think that's related lol. I also had shingles twice when I was 12 and when I was 16 and I'm not sure if getting it so young and twice is an indicator that something was probably wrong. I'm sorry for all of the information. I'm just trying to connect the dots. I know what you mean about needing a personality change to do what she recommends. I've finally gotten to the point where I don't push myself too hard around the house. I only push myself every few weeks when things get too out of hand and I can't stand the mess anymore. I've accepted that I can't get a job or go to school right now. The thing I push myself the most with is doing the workouts because I keep thinking that for dysautonomia I can't allow myself to be deconditioned but I never though about what my primary condition might need. It's very obvious at this point though that exercise is making me worse. I also wonder if I should try to move downstairs to avoid the stairs for now on. The thing I'm worried about is that I'm going to give up everything and they are going to tell me that it wasn't mitochondrial disease after all and chastise me for not getting any physical activity. I'm also worried that I might not wind up having energy replenished and be able to slowly build up. Okay, yep I probably def. need a personality change to deal with this lol. My neurologist appointment is May 2nd and I'm going to ask him to run some tests for me and if he doesn't know how or what to do that I'm going to ask for a referral to a mito specialist (which will be out of state.) I'm not quite exactly sure what to ask for to have run and how accurate these tests will be. I heard that a lot of times you can have it and have tests still come back negative. I'm petrified of having a muscle biopsy and I know the anesthesia will make me extremely sick so I'm trying to avoid it if I can. Again, thanks so much Chaos. I love talking to you because you seem so knowledgeable on mitochondrial disease. Anatomy stuff I tend to look up and research until I understand but Mitochondrial Disease is just sooo confusing and I've always hated biology and had trouble understanding it.
  22. @neubala oh wow thankyou. That was very informative. That sounds nice to be able to work there. Welcome to the site btw Do you know if they search for the primary cause of the dysautonomia and do testing to see what caused it?
  23. I was always that go, go, go person who was super ambitious and would push myself way too hard and it's at the point I really need to take a step back and stop. My husband won't even allow me to push myself anymore. He's cleaning the house right now because the landlord is coming for the quarterly inspection Tuesday and he won't let me help because he knows I'm too sick and knows that I'd be risking hurting myself out of guilt. He seriously wants me to stop weightlifting too. I don't know why it's such a big issue for me because I'm not increasing on strength or mass because my body is being stupid so I'm practically going there and wasting my time and getting sick for no reason. It was one think when it was only the dysautonomia that was apparent and I would just get super dizzy and tired but now that I'm turning blue, having seizures, and stuff like that and it's possibly from mitochondrial disease I really need to take a step back and listen to my body. Not sure what to do about the exercise thing. I appreciate the link btw. It's obviously making me sicker afterwards which should be a sign I should stop but I don't want to just do nothing, but I'm not quite sure what I can do. Weightlifting use to not make me sick when first started in November to help with the dysautonomia but now it makes me very sick. I guess I'll just have to try different things and see what doesn't make me feel like someone stole all of the oxygen from my body.
  24. What happens if you overtax your body and your have mitochondrial disease? Can it kill me or will it just make me feel sick? I'm trying to figure out if it will really be that dangerous when I try to push through. No, we keep meaning to get one and still haven't. I really need one though. Maybe it can help me avoid these episodes sometimes if I know it's getting too bad.
  25. Oh wow thankyou. I never even thought of that. I guess what i'll do is on May 2nd ask my neurologist if he can test me for mitochondrial disease and if he doesn't know enough about it I'll ask him for a referral then. Good idea. ty
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