trappedat20

@ Katybug that makes sense. I bet I won't feel better until my primary condition is identified. I don't even know about the primary cause of my dysautonomia anymore. I feel like I'm grasping at straws. My doctor thought it was Mytonic Muscular Dystrophy at one point, my husband thinks it's mitochondiral disease because I felt a little better taking creatine and now I'm constantly craving creatine powder, and we really thought it was a chiari malformation because I had all of the symptoms and it even explained my neck being all screwed up and feeling like my brainstem was compressed and stuff but the catscan and MRI of my brain only said no. So now I don't really know. The list of possibilities is so extensive and I'm not even sure where to start.

@Katybug You are always so helpful whenever I ask a question on this forum. Thankyou. That makes me feel a lot better because I felt like my standing/sitting bp became fine but I still felt just as crappy and I didn't know why. I'm glad to know that there isn't a direct correlation and it's not unusual for that to happen. Do you think that could also be the cause of my passing out? I always assumed my passing out was related to the blood pressure because my blood pressure use to give off crazy readings but I don't get those crazy readings anymore. I'm not sure if my blood pressure still does crazy stuff during things like going down the stairs and stuff but a lot of the times when I feel like I'm going to pass out my heart does beat faster.

My neurologist ordered me to get both tests done when I went yesterday for my first appointment with him. He did it for 2 reasons: he wanted to make sure I didn't have an arrhythmia (I don't but docs like to rule out obvious stuff), and I told him how my seizures happen because my heart speeds up wayyyyy too much from normal activity. Now it's at the point where I roll over in bed and my heart starts to race, but now the stairs are causing me to have seizures because my heart feels like it's going 200+bpm out of nowhere. I'm starting to get very worried that I'm going to have a seizure at the gym too because I'm getting close to the point where I have a seizure as far as feeling sick an my heartrate goes. He said that when your heart beats that fast it's not really pumping blood or oxygen or something like that. I sound stupid so if someone remembers how this goes please explain it to me. I had horrible brain fog when I went and so my husband was the one explaining what he said to me.I always turn blue when I have seizures and I stop breathing and he said that could be related to my heart beating so fast. He was also talking about wanting to put me on a beta blocker but we are waiting until my next appointment (May 2nd) and for me to get both tests done. Do you think these tests will actually tell me anything or that they are just useless tests to rule out it being a heart problem? Will it show my heartrate acting abnormally to normal situations like going up/down the stairs? So, I thought I would mention this. My blood pressure/heart rate use to act crazy with sitting to standing and stuff. Ever since the chiropractor my blood pressure and heart rate seem pretty normal when I'm sitting or going from standing to sitting. There's not a big change like before. This is weird to me because the chiropractor didn't help my dysautonomia but why did it make my blood pressure/heart rate normal? Granted when I do certain activities my body still responds very abnormally. Even though the simple act of standing doesn't make my blood pressure/ hr act crazy have me go up/down the stairs or to exercise or even roll over or stretch my heart rate likes to go crazy. I haven't really taken my blood pressure lately so I don't know if it still goes crazy during these activities but I would assume it does. Can anyone explain this? How did the chiropractor not help me like they said they would but it somehow made my standing/sitting blood pressure normalize? Do I even have a dysautonomia subtype? How many people don't. Feels like POTS and Dysautonomia is used interchangeably I feel like I never fit a subtype. Before my body use to act similarly to POTS but my blood pressure/hr didn't act consistently when I would stand. Sometimes it would make my blood pressure skyrocket, sometimes it would make it plummet. Now my blood pressure/hr is normal. I know for Inappropriate Sinus Tachycardia your resting heart rate has to be over 100 but my resting heart rate is fine but my heartrate acts very abnormal to normal situations. It likes to skyrocket at the tinest things. Does anyone have any insight into this? Sorry I post so many questions on here. I feel like I take doctors opinions with a grain of salt nowerdays and you guys are the smartest people I know when it comes to this stuff.

I know that one of the metabolic screenings they do for this is liver enzymes and ammonia. When I was in the hospital one of my liver enzymes was 408 and the other was 836 which was off the charts as they are suppose to be 30-40. Everything else came back fine though and they did extensive testing for liver damage and they couldn't find anything. We still have no idea why my liver enzymes were so insanely high as I don't drink or take any medicines that would do this. Could this be related in anyway? I was reading up about it here http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934633 Thank you for your help.

Okay, so I don't remember the exact day I started taking creatine but I was taking it in hopes it would help me with my muscle weakness problem. I think I started taking it Saturday or Sunday last week. My last seizure before today had been Monday. I had felt a little bit better while I was taking it and went 6 days without a seizure. I stopped taking it Friday because I ran out and than I had a seizure today. We think the creatine is helping me a little bit. I didn't take it for that long though so it's hard to really tell but It was a little easier to get up/down the stairs and I even had a pretty good day (for me) at the gym the other day, and I went 6 whole days without a seizure and when I did have a seizure I wasn't even taking it anymore. My norm is about 2-3 days. The weirdest thing is that I CRAVE CREATINE. It kinda reminds me of the people with Pica who crave sand and weird stuff, only I crave the creatine powder. Ever since the first time I took it I have been craving it all of the time. That's like saying you crave fish oil capsules or something. It's a little strange, but I really do crave it. Anyways, does this sound like something related to mitochondrial disease or what? I feel like I come here quite often with a possible cause of a primary condition, but I really just don't know. I feel like the creatine was helping my seizures though because while I was taking it I didn't experience any (it takes about 2-3 days of taking it for it to work and to get out of your system which coorelates with when my seizures occurred.) I really did only take it for a little less than a week though so it's hard to say, but doesn't the fact I was craving it say something? As far as looking at the symptoms of Mitochondrial Disease goes nothing specifically stands out to me because a lot of it is general symptoms that could be said for anything, but does this creatine thing say something? My husband says that creatine helping my symptoms would only be seen in mitochondrial disease. Is this true? Idk. Thoughts? Opinions? I don't really know anything about mitochondiral disease?

@dadofpotsson I keep my body temp down regardless because heat makes the dysautonomia worse. I normally like it around 67-70 because it's not too hot, not too cold. I informed my husband of this though to make sure I'm cool during the seizures to see if it helps prevent me from having multiple seizures. Thank you. What normally triggers your sons seizures? I'm not sure if you already mentioned it or not. I have horrible brain fog and memory lol.

@Gracefulprincess that sounds so scary. I'm glad you're alright. My doctors won't allow me to drive. They don't want me to drive or work (not that I can do either anyways feeling so sick) until I can get the passing out and seizures under control. I have both a couple times a week, and while most of the time it involves stairs or the gym, we just don't chance it. I also have horrible driving anxiety and I don't want to combine that with the dysautonomia. That's really crazy that you went so long without a seizure and than had one again.

Stairs are the devil to me. I hate stairs with the passion of a thousand fiery suns. Ever since getting diagnosed with dysautonomia I can't even name anything I hate more than stairs. They use to make me feel extremely sick after climbing the 10-12 steps it takes to get to my room, now that I'm having seizures I notice that all of my seizures are related to the stairs and I get them either after going up or down them. I hate them and with the exception of the stairs it takes to get to my room I avoid them at all costs. Exercise is good for potsies, but if stairs make you extremely sick than I would avoid them. If they don't make you more sick than other exercises than I don't see the harm and more power to you. I need to be extremely careful with stairs though because so far 100% of my seizures have been linked to the stairs and about 75% of my syncope episodes have been. If they are dangerous to you than def. avoid them when possible.

@Dadofpotsson it's interesting you say that because right before I have my seizure I feel like my heart rate has to be at least 200+beats per minute. My blood pressure is probably really low too because my face turns blue. That sounds very similar to my seizure, only I don't vomit. My husband says that I make noises like I'm trying to vomit but can't though and than I "awake" with a sore throat. Your son and I sound very similar though (with the seizures) so I will have to keep those medicines in mind. Thankyou.

@dadofpotsson dilantin is an antiarrthymic? does that mean it could help me if its due to heart rate issues?

@IceLizard most of the time I have a seizure involves the stairs. That is because my stairs are my biggest trigger though. My heart rate goes sky high and I have trouble catching my breath and feel like I'm dying. I'm not actually dying but my heart rate goes so high that I feel like it and it's an awful feeling. This has been part of the dysautonomia and it normally goes away in a few minutes. Now it's worse than usual though and causes me to have a seizure. I have to rest and take it easy for the several hours following one too. I feel very worn out and like I can't think properly after one. @looneymom I'm pretty sure it's the reflexic anoxic seizures that have been discussed on here. Luckily my seizures aren't these huge things that take a few minutes and my husband says they last about a minute. By the time he'd get his phone the seizure would be over. I would be really interesting in watching it though because I really want to see what's happening to my body during it. @gackedo They said I don't have epilepsy. They want to run a longer eeg on me to make sure but they said they're pretty sure it's just part of the dysautonomia. I didn't know you can do those at home though. That would be really interesting. I will have to mention that to my neurologist. Thank you. @SarahA33 No, I never had seizures growing up. I had my first seizure January 8th 2013 (I wrote it down lol) although I didn't realize until now that it was a seizure. It was the very first symptom of dysautonomia I experienced before I got full blown sick in June 2013. I haven't really had seizures in between that time though, and yet, I've had 4 seizures in the past 7 days. My dysautonomia is getting a lot worse though and my heart rate is acting up a lot more now so that even turning over in bed makes it speed up too much. I haven't had my blood pressure/hr checked during these episodes but I imagine my heart rate to easily be at least over 200 beats, easily. I'm so sorry about your seizures. Those sound awful. I don't remember my seizures either and the several hours after them are normally blurry. I'm pretty sure I have reflexic anoxic seizures. http://www.patient.co.uk/doctor/Reflexic-Anoxic-Seizures.htm this is the site I was looking at. I'm not really an expert on any of this though. Sorry. I didn't even start researching seizures until a few days ago. Those seizures on that website sounded almost exactly like my seizures though. From what I know though a normal EEG is part of the diagnosis of reflexic anoxic seizures, but I could be wrong. Good luck. I wish you the best. Those sound awful and I really hope they can figure something out for you.

Had another seizure today. 4 in one week. That's crazy. It seems to be at a rate of every other day now. I don't understand why I'm getting them all of the time now:( I went from not having them to getting them every other day. The only thing I can think of for my type of seizure is a pacemaker and I read that makes other dysautonomia stuff worse because than your heart rate and blood pressure can't counteract each other

@IceLizard I just made a neurologist appointment for March 26th earlier today because I had my fourth seizure this week. Hopefully, he can help clear up this weakness thing too.

@Bsmith85 I'm glad you are getting some progress from it and it's improving your health. Yeah unfortunately feeling a billion times worse than the people around you for the same activity is just part of the dysautonomia. @Susan3 my testosterone is fine. If anything it's higher than normal. I use to build muscle so easily before the dysautonomia. My husband use to tell me I had awesome genetics. Unfortunately, now I'm not only not making any progress I'm going down on my lifts almost every week. I'm getting weaker outside the gym too. My husband has to take my bras off for me and I have this fear that in a year I won't even be able to dress myself. I'm getting weaker than I use to be though. At first I was still able to make progress in the gym, than I started plateuing, and now I put in the same amount of effort (A LOT) and keep going down on my lifts every week and getting weaker and weaker.

Is a neurosurgeon found at a neurologists office or do you have to look somewhere special for them?

Thankyou I honestly have no idea what kind of specialists to see at this point. I'm suppose to see a neurologist because the doctor at the hospital wanted me to follow up and my GP's been wanting me to see one for forever, I don't know what kind of doctor I should see about my neck though

I actually think I remember us talking about this on my old thread lol. The "Found My Cause of My Dysautonomia and It's Curable" one. Only it turned out to be total ** that it was going to make me better and everything. My neck is as straight as an arrow and I have a degenerative disc in my c4 and arthritis and I had 2 fractures that healed. They said my spinal cord was pressing on my brainstem but my doctors at the hospital laughed when I said that. I got some relief from chiropractor adjustments but it wasn't making me better like they told me it would. Good luck with that. I wish you the best I don't know who I should see for my neck now. I see that chiropractor adjustments are helpful, but so many chiropractors lie and try to make you think it can cure stuff that it can't and try to screw you out of money. I can't afford it either and insurance doesn't cover it. Do you think physical therapy will work or should I ask my doctor about surgery too? Maybe it would have worked down the line but it had been 3 months and besides the initial relief of neck pain, nerve pain, and the migraines/ and sensitivity to light/sound (which came back towards the end of my adjustments anyways) it really didn't help the dysautonomia. I feel kinda bummed and lied to because they made it out like it was def. the cause and in 3 months I'd see dramatic improvement and at the end of the 9 I would be all better. Hahahahaha nope. Thanks, me too. I guess the seizures are here to stay. Good luck with the neurosurgeon though. I hope everything works out for you. Edit: I'm trying to read that thread you posted but I'm so stupid for several hours after seizures that I don't even know what I'm reading lol. I'm going to have to try again tomorrow. Thanks for the link

@IceLizard I know what you mean. I really don't do cardio. I try for health reasons, but lately I'm so sick I can't do any kind of cardio at all. Before I was able to only do the bike at the gym, but now I can't do anything. Weightlifting was the one thing that didn't give me any problems but now weightlifting is making me sick too, and I'm getting progressively weaker. It's the catch 22 of dysautonomia. You need to workout to stay conditioned but that's easier said than done. I don't have Ehlers Danlos that I know of (I haven't been tested) because I never broke anything or dislocated anything or been super flexible or anything that would make me suspect it. I collapse too. Everyone at the gym must think I'm a freak by now. They go up to my husband and tell him he looks better everytime, I'm sure if anyone came up to me they'd tell me nobody would judge me if I gave up and went home. I swear people hate when I'm in their establishment because I'm just an accident waiting to happen. Hang around me for a few days and I'll either pass out or have a seizure in front of you. Now that these seizures are becoming a lot more frequent I'm becoming very worried about the gym because I don't want to have one in the gym of all places. It's not like fainting which I can stop from happening when I get the signs. Once I get the signs I'm going to have a seizure it's too late and my best bet is to lay down before I hit the floor.

Omg I had another one like 45 mins ago. This looks like it's going to be a frequent things. This time I walked down the stairs, went to the fridge and got a slice of pizza and than felt really sick like last time. I had to lay down and than everything felt incredibly weird and like chunks of time were missing again. Came back to consciousness and asked my husband if I had another seizure and he said yes. It was exactly like last time too. My brother in law saw it too this time. The craziest thing is that now that I've had a few I realize this isn't the first time this happened to me. The very first symptom I attributed to dysautonomia was a seizure. I didn't get full blown sick until about June last year. Although weird symptoms started up about January that year (a few months before.) January 8th (I recorded it down and that's the only reason I know) I had my very first weird symptom. My dogs were throwing up in the middle of the night and it startled me because I wanted to get them out the door as fast as I could and away from rugs because my mom made me clean it up in the middle of the night when they puked. Anyways, I guess my heartrate went from being sedentary (sleeping) to being startled and trying to get them out the door as fast as I could. My heart started beating extremely fast, I hit the floor and was unable to get up or move, and than some time passed and I came back to consciousness and had to lay on the couch because I could barely stand. It felt just like these past few times. The craziest thing is that was the first time something didn't feel right with my body. Than between than and June when I got fullblown sick I had trouble with feeling sick in the middle of the night and falling in the middle of the night and almost passing out in the middle of then night (when I'd awake to try to go to the bathroom) and than not sweating during workouts and getting extremely overheated a few times. So, only a few strange things until June when I got full blown sick and everything hit me at once, but the seizure was the first thing that felt wrong with my body and is when I talk about it I say the symptoms started the beginning of January but I didn't get completely sick until June. I always think of that night though. As that incredibly weird. I def. think it has to be that my heart speeds up extremely fast and stops or something like that like has been mentioned because an extremely fast heart rate all of a sudden has been attributed to every seizure.

@alicia I haven't but I've been meaning to. I didn't know that could cause muscle weakness like that. I will def. look into that though. Thankyou @katybug no the steroids didn't really do anything at all. I was still going down on my lifts while I was taking it and when I stopped I was still just as weak. They didn't do anything for me which my husband said is really strange because they make everyone's strength go up. I was progressively getting worse while I was taking them, and still getting worse at the same pace when I stopped. It's like I never took them to begin with. They just didn't do anything. Honestly I don't know why I haven't gotten my adrenals checked by now. I keep meaning too for multiple reasons but haven't done it yet. That's interesting about the lactic acid buildup and taking longer to recover what could I do about something like the lactic acid buildup? What's this cervical spine instability thing that you're talking about? Oh they had me do that stuff soooooo many times in the hospital. You'd have to already be really weak at that point for it to show, but it doesn't show where you were before than. I looked up the myositis thing and it's def. going to be on my list of possibilities. Honestly when you have dysautonomia you have such a laundry list of symptoms that it's so hard to figure out what else is going on with your body because you can have the symptoms of many things. Thank you though I'll keep that in mind for my doctor.

I actually have two questions but they are slightly related so I'll post them first here. First off, a few months ago we were debating the possibility of Myotonic Muscular Dystrophy which had me very upset. I never got tested for it so I don't know. I didn't mention it on here because not even a week later I went to the chiropractor and found my supposed cause. Which as we all know now was bs and I still don't know my primary cause. I saw a blog post from a popular dysautonomia blog that sounded similar to me. I looked it up and it sounded even more similar to me so I brought it up to my doctor. He did a finger test for myotonia and than told me it was a good possibility. At the same doctors appointment I asked for a handicapped parking permit (which being the idiot that I am never turned it in because I feel like it will make being sick official or something) and he wrote down the Myotonic Muscular Dystrophy thing because he said they won't ask questions. That was a few months ago and on my primary cause search I next jumped to the chiropractor (because that was good news), to chiari malformation (but than my catscan showed up fine), to idk. Back in November when I started going to the Gym I was making a little bit of progress every week. Than it got to the point that I wasn't making progress, and now I'm going down on lifts. The problem with that is I do everything perfectly. I have a husband who is majorly into body building who can vouge for that. He says there is not anything he can tell me to tweak because I'm doing everything perfectly, and he thinks there is def something wrong. I'm eating in a surplus, getting proper rest, going to the gym like I'm supposed to, eating enough protein, everything. It's like I'm doing everything perfectly and getting weaker and weaker. My question is if this is part of the dysautonomia or my mystery primary condition? Any other weightlifters on this board who do everything perfect and get weaker and weaker. The problem is that I was progressing, and than I stopped, and now I'm getting weaker and weaker (at the same time I'm getting really sick.) I'm getting weaker outside of the gym too though. I am having trouble taking my sports bra off after I'm done and this has nothing to do with working my arms and having them be tired because this happens after legs days too. My husband has to take my sports bras off because I'm too weak to. I have to tell you a secret in hopes you won't judge me too. A little while back I was taking a steroid to help combat this problem and I still kept going down on my lifts. This was a steroid that is female friendly and was originally made for muscular dystrophy so it wasn't really dangerous or anything. I stopped taking it because I kept going down even with it. It's something that people said made them be able to lift like crazy too. I'm not sure if this is because of the dysautonomia or if there really is some kind of muscular dystrophy type thing going on. The second question is slightly related. Can dysautonomia progress? I feel like I'm progressively getting sicker. I'm not even talking about good days/bad days stuff. I'm actually getting sicker. There is less and less stuff I am able to do and new symptoms popping up (like the seizures.) Is the fact my dysautonomia is progressing give me any hint about the primary condition or rule certain things out? In what cases does dysautonomia progress? I got full blown sick a year ago and lately (the past month) I'm progressively getting worse and worse with no good days and no symptoms appearing.

@Freaked oh wow I most def think that is what happened then. Normally when I go up the stairs I feel really sick like that, but this time I got more sick than normal and than I had the seizure. It really sounds like this is what happened. Thanks guys. Out of curiosity now that I've had my first seizure what's the chances of this happening again? I've progressively gotten worse and I'm more sick lately so I feel like if i'm not careful it will happen again.

@Freaked interesting on the 3% thing. I was wondering what the actual numbers were. Thank you. That sounds kind of similar to what I went through. I really wish I knew what my heart rate and blood pressure were doing at the time. Can the heart stop after beating really fast and erratic (probably not regular due to the way I felt). Like could going up the stairs and having it beat so fast and make me feel so sick make it than stop? Ugh Idk. The whole thing is so confusing. I don't even remember the actual seizure and between seizures I felt like I was dying so I have no idea what my heart rate/bp was doing. If I did this would have been much easier to figure out. Def part of the dysautonomia though considering it was my normal trigger. @Dadofpotson omg that sounds so similar to what I experienced. My husband said I kept making noises like I was trying to throwup but couldn't and than I "awoke" with a sore throat. I'm sure it was that my blood pressure was very low and my heart rate was very high. That seems to make the most sense because I felt like my heart was going to beat through my chest when I came upstairs but at the same time I felt like I was going to pass out or something. I honestly felt like I was going to have a stroke. I was told my eyes rolled back. I didn't wet myself after it but It's hard to say if that was because It wasn't going to happen anyways or because I went downstairs to pee before I went to bed, and than I went upstairs to go to bed and started having seizures. @Elena11 thankyou. It looks like the wait list for Vanderbilt is extremely long though but I guess I'm lucky in the sense I live right outside of Nashville and don't have to make a trip out of it or anything. They told me the eeg didn't show epilespy and we never really suspected it anyways. Granted, I already had the dysautonomia diagnosis and I'm sure if I didn't they would have tried to say it was epilespy. I hope you don't get any more either.

@corina I wish. I just looked that up and woah is that expensive. My husband and I are drowning right now between medical bills and me not having a job to help. I've been taking 4 breaks on my way up the stairs and it still makes me a little sick, but at least if I really pace myself I don't have a seizure or anything. Thankyou though. I will keep that in mind if my husband and I ever get out of this financial mess.

@ Katybug they wouldn't do that but I'm being referred to the Vanderbilt Autonomic Dysfunction Center (which is only 20 minutes from my house so i'm an idiot for not going sooner) so hopefully they will do that. I don't know much about their procedures but I hear amazing things about that place. Hopefully they evaluate you during your triggers. I'm really not sure if it's that my blood pressure bottoms out or goes extremely high when I climb up the stairs anymore. Most of the symptoms suggest it going up, but my face turning blue like that suggests the opposite. Maybe it's not a simple blood pressure/ heart rate problem and there's not enough oxygen or something. I definitely want it evaluated what is going on with my body when these certain triggers make me sick though. The shower is obvious, but the stairs isn't as obvious and feels dangerous at this point. I'm getting discharged in a few hours when the doctor comes around and gets everything together so they are kinda done with me which I'm glad about because they don't really understand dysautonomia anyways. Glad to be going to Vanderbilt eventually though. They should sort everything out. @Dadsofpotsson that's interesting. My husband says I didn't pass out though. The hospital kept asking me if I fainted too. I did lose consciousness though as I don't remember any of it. That's not the first time I've read about that today though so I think I'm going to look more into it. Thank you. @IceLizard it's honestly so confusing. Trying to figure out what's going on with our bodies when it's so inconsistent and just does whatever it wants. The funny thing is I never pass out in front of people, so I don't know what happens when I pass out. I don't think I have seizures though as this was a new feeling. I didn't pass out but I did lose consciousness during the seizure. Ugh I know that feeling. Going up the stairs at nightime I feel like I'm going to die, but I come myself down by telling myself that it passes in a few minutes and nothing bad happens. Now that I've had a seizure I have no idea how I'm going to tackle the stairs that lead up to my bedroom at home. I'm really worried because I can't calm myself down by telling myself nothing bad will happen now because I don't know that now. Last time something bad did happen so who knows. I HATE that the stairs lead up to our bedroom and I have to take them, but I think now I'm going to take a lot more frequent breaks to make sure I don't get that sick feeling to begin with. Even if it takes me 10 minutes to climb stairs at nightime it's better than spending three days in the hospital because I started having seizures. Ohh I really like that idea of a pulse oximeter because I use the heartrate on the machines at the gym to keep from getting sick. I learned at 150 I start to have symptoms, but by 170 I start to feel really sick and so I learned to manipulate it to try to get it down when it goes to 150 so that it doesn't get to 170, maybe if I get one of those it can tell me when to slow down and when it's okay to walk faster.Great idea. TY.