Creatine Helps? Mitochondrial Disease?

[IceLizard]

There are similarities between your history and mine. I was ambitious and I used to push myself very hard and then crash. I had good grades and graduated from a special gifted boarding school. But, something was not right, and had not been right since childhood when I would tire and become out of breath so much faster than the other kids during sports. Then in college it got to the point where I couldn't push myself any farther. I wound up in the hospital and was practically bedridden with dysautonomia for about a year. I have recovered somewhat from that, but it has not been the same. I have to be very careful not to trigger another tachycardic convulsive attack again. It's hard because I want to start a part-time job tutoring kids in math but, I am not sure how much I can actually handle. Sometimes it seems everything I try I end up falling on my face again and having to build myself back up. But I don't want to give up trying.

I don't know whether this is mitochondrial disease or what, but I tire so easily, both mentally and physically. I am being testing later this month to see if I have MCAS because I am having some signs of that (MCAS and mito symptoms overlap a lot I am finding). I probably need to be tested for mitochondrial disease as well. Even if I am tested for Mito, I am not sure what can be done about it. Isn't the treatment just supplements and vitamins right now? I mean it would be nice to know more about what is going on, but is traveling out of state for tests that may be inconclusive anyway really worth it?

[trappedat20]

@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!

[IceLizard]

I just want to let you know that I had to leave after my 1st semester of college, but I did make it back a year later and I have finished with a Bachelor's in mathematics. During the time I was out I was diagnosed with POTS, syncope, and Joint Hypermobility syndrome. When I returned to college I had a lot of trouble and sometimes I had to use a wheelchair. I had numerous episodes on campus and the campus police got to know me pretty well. Sometimes I had to do medical withdrawals of my classes and be part-time, so it took me 5 years to finish instead of 4. So, it is possible to get better and pace yourself well enough to get something done. At least in my case.

But this year I pushed myself too hard in graduate school because I had to in order to stay in the program and I wound up extremely sick and in the hospital quite a bit. I am talking cannot even sit up without a heart rate of 190 and passing out with convulsions sick. I am doing much better than that since leaving school, but like I said I have to be careful. I am about 5 classes away from a master's degree so when I am up to it again I will try to finish with that, even if it is one class at a time.

So, don't give up on school just yet. You might just get well enough to go back. I didn't think I would be able to when I was at my worst, but it did improve with lots of rest and a low-stress environment. Give yourself time to rest and recover (for me this meant an entire year).

I am trying the creatine and I find that I like its sandy texture when mixed loosely in water. I hope that is a sign that it will help me, but I haven't been on it long enough to tell yet.

P.S. Thanks for the suggestion of tutoring online. I did do this for 2 years before I went back to school. I was able to do it well, but I did not make much money and I prefer to help people in person. I currently have 2 regular students that I meet with in person for tutoring and it is going very well so far. I want to add more students and make it my own business, but I am afraid of pushing myself too far. We'll see. I hope you can start on your writing project when your brain fog lifts.

[trappedat20]

@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.

[Chaos]

Sorry I haven't had time to formulate a long response. Here are a couple links to some abstracts on Mito disease that you may be able to print off to give to your PCP. They are synopsis articles that the Mitochondrial Disease specialists have put together to help other physicians start the process of recognizing and diagnosing Mito disease.

http://www.sciencedirect.com/science/article/pii/S1567724913002158

http://www.sciencedirect.com/science/article/pii/S156772491300247X

They are only the abstracts as the articles are behind a pay wall. I might be able to get them later but will PM if you I can. Or send me a PM to remind me in a few days since my brain is the consistency of Swiss cheese as far as my memory goes.

[trappedat20]

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.

[Chaos]

I have the articles so I will PM them to you later. If anyone else wants them PM me and I can send them to you.

Have you had Pulmonary Function testing done to make sure you don't have a primary respiratory problem? Have you had Cardio- Pulmonary Stress Testing done? Sorry, can't remember if you said you've had these or not.

[trappedat20]

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.