trappedat20

That's a little upsetting that the neurologist wasn't too concerned about it. I haven't seen my neurologist since it started but I hope he doesn't just make me deal with it or anything. It's so hard to see what's linked to the dysautonomia and what's not.

@Allaboutpeace nah I stopped that a month ago. It was progressing before too but now the new symptoms that appear are things people can see so for some reason it seems like it's progressing faster now than it was a few months ago. Idk if that makes sense or not lol. I'm really glad I saw it because I sounded stupid trying to explain it to people before lol. Good thinking though.

@gjensen that is so great. I really hope everything works out for you. Good luck!

@looneymom that is interesting. I'll have to keep in mind to ask for that. I got really excited at the word urine test lol. Most of the tests I've had lately are the unpleasant ones lol

@dkd I'm really not sure how to know if it's neuromuscular or not. It def. feels that way because of how everything feels but who even knows. Today it feels like everything is numb and tingling. Normally I only experience this in my left foot and or left hand but today even my face is experiencing it which is odd to me. I'm trying to get a hold of my husband to see if he can call the neurologist. I'm going to go look up a pulmonary test and see what that is.

@IceLizard Hmm that's very interesting. I think that the next time this happens I will try the Valium again to see if it actually helped or if it just knocked me out, but I won't go to sleep this time. If it actually helped I'll have to ask my neurologist about librium. Ty

Update: Last night my twitches started at midnight and my husband gave me L-Dopa because we read somewhere about low dopamine levels and twitches but it didn't help. Around 1:30 am we got really fed up and my husband gave me a valium. I don't know if it stopped the twitches or just knocked me out but I don't care lol. I was already soooo tired from staying up all night the night before with these twitches and I really needed my sleep last night. I wasn't about to stay up all night again with them. When they started my husband and I tried a few things to see how I responded. I tried walking on it and that only helped while I was walking. The second I sat down again it started. So, that wasn't very useful considering I can't stand up for long anyways. I could still feel some electrical buildup but not as much as when I was sitting and it didn't twitch when I was walking. Granted, considering the moment I sat down it started again this is not helpful at all. I tried flexing my foot and leg and that helped a little while I was doing it, but it was less effective than the walking which already wasn't effective. We tried to have my husband massage that area and that was def. the wrong thing to do. Apparently my leg doesn't like to be touched when it's like that or else it will just twitch uncontrollably without even the 20-30 second breaks I normally get. The electrical activity feeling is much worse when it's being touched too. This is the best way I know how to explain them. It feels like there is a lot of electrical activity that builds up for about 10 seconds and than it "releases" by twitching/kicking. 20-30 seconds later it starts up again. Then it likes to repeatedly do this for hours. It had nothing to do with resting either. The first night I got them I was laying down trying to go to sleep, but last night I was still up and on my computer when it started. It has happened the past 2 nights so I can't really form a pattern but it started at 1am the first night and midnight the second night so maybe it just likes that time lol.

@Katybug Oh, okay. I'm sorry. I feel stupid now lol. I have no idea what kind of specialist to see atm so when I saw that I wanted to look it up to see if it would help me.

@IceLizard thanks for the suggestion but we're really poor atm too. I will keep that in mind thought if we try another specialist and it doesn't work out. I guess if I can't find a specialist who knows what they are talking about we'll have to find the money someway. Hopefully the next specialist I see has some kind of idea what they are talking about though. Hopefully.

@Alison No, my electrolytes and thyroid and everything were checked just a few weeks ago when I was in the hospital and everything came out perfect. My diet hasn't changed either.

@looneymom It's so funny you say this. Check my update: at the top of this reply. We read something about low dopamine on a few of that one youtubers comments. I have ADHD-Combined type so we thought it made sense and tried L-Dopa last night but it didn't help. You said it took 3 weeks though? Maybe I should continue it for a few weeks and see if anything changes? As far as the GABA deficiency goes my husband had me take a valium last night and I'm not sure if it stopped the twitches or just knocked me out (I was already tired to begin with from not sleeping the night before so who knows lol.) to the point I wasn't even aware if I was having them lol. I'm turning 21 next month and I got shingles twice when I was 12 and when I was 16. I had strep when I was 18. Besides that I've only had common colds though. The dysautonomia started about a year ago and I didn't have anything around the time I got sick. I really hope everything works out for your son. That sounds awful. Good luck on everything.

I don't want to sound stupid but what's a mre specialist lol? I've looked up pots specialists and specialists for dysautonomia in my area but since I live 20 minutes from Vanderbilt they all work there. My neurologist is working on getting me in there but from what I read it takes like a year and with how fast things are progressing I can't wait a year for answers. I'm not sure what kind of specialist I should seek at this point that will help me find the underlying cause of my dysautonomia so if you have any ideas please let me know. I would love to find a doctor who knows a lot about dysautonomia and the difference causes so we could search for my cause.

So last night around 1 am my right leg started jerking/kicking every 20-30 seconds uncontrollably. This lasted until 7 AM! Only then was I able to fall asleep.for about an hour before my hubbys alarm went of for work. I never fell back asleep unfortunately. I started crying though because I was SO tired and it would just not quit and I couldn't fall asleep with it doing that. I kicked my husband several times until we eventually moved far enough away from each other so it wouldn't kick him. I looked it up and it's called myoclonus. To make sure that was what I was experiencing I looked it up on youtube and I came across this video

I'm not sure if this symptom is here to say but every new symptom I get likes to stick around. I really hope it doesn't come back but I have a very good feeling it will. I remember thinking this about my seizures and now I get a few a week. Once a symptom appears for me it doesn't disappear. From what I know this isn't part of dysautonomia. Could this be a hint towards my primary condition? I know I've had a lot of neuromuscular problems lately but I kinda brushed it off as part of dysautonomia and now I'm wondering if that were a mistake. I experience numbness and tingling in my left side of my body more often lately, my muscles are getting weaker and weaker and I've been doing everything right for weightlifting but my strength is going down and down. My husband is SUPER into body building too and has been saying that something is seriously wrong. I need his help to take my sports bra off or any kind of tight shirt. I get muscle spasms in my legs occasionally, but not often. My doctor thought he noticed myotonia in my hands a couple months ago but we never really looked into it but thought it was worth a mention. I tend to have problems with grasping things but nothing that is overly noticeable. None of this stuff is enough to appear when they do those little neurological tests where you press your feet against their hands and grasp their hands and stuff because it's not that bad, it's more that it's getting progressively worse. Probably leaving something out but you get the picture.

Thoughts? Ideas? I feel like I've been chasing this primary cause but its really hard because dysautonomia has a laundry list of symptoms so a lot of things can just be brushed off as part of the dysautonomia. Does it sound like my primary condition could be neuromuscular or something? Another weird thing is I have a VERY strong craving for creatine powder. I crave it like 30 times a day although I don't allow myself to have it but once a day and none at the moment while we're looking stuff up. It creates this good feeling while I'm eating it that I can't explain and makes me feel a little better after only a few days of taking it. This lead my husband to believe it could be mitochondrial disease. I don't know where my new symptom fits with that though and I don't know what other conditions that are seen with both myonclonus and dysautonomia. Any help would be appreciated. Thankyou

EDIT: Well, looks like the symptom is definitely here to stay. It started up again at midnight tonight. This seems to be around the time it likes to start up. I wasn't in bed/relaxing or anything either it just seems like it likes to start up between 12-1 regardless of what I'm doing.

Okay, I guess I have a new symptom. I've been trying to sleep for the past 30 minutes but can't because I keep having a few myoclonus jerks per minute in my right leg. I'm not exactly sure if that is what it is because it's 1:45am and I'm tired but that's what keeps popping up. My right leg keeps involuntarily jerking/kicking a couple times per minute and this has been going on for the past 30 minutes and I really want to sleep but it won't stop. Ugh. As far as I know this doesn't seem to be a part of dysautonomia. Does anyone experience this or know what this could be hinting towards as a primary condition?

@Sue1234 I'm trying really hard to figure out the cause of my dysautonomia and because dysautonomia has such a laundry list of symptoms that fit with most of the causes it's really hard to tell. So far I've been trying to piece together things by looking at symptoms that don't belong to dysautonomia. So far these seem to be

1. Neck pressure/pain towards base of skull. This started or got really bad and noticeable around the time that my dysautonomia symptoms started. I also have a lot of problems with my neck like a degenerative disc, my neck is starting to curve the wrong way, arthritis in my neck, and I had two fractures that healed. This is why I was so quick to believe all of the claims the chiropractor was making which turned out to not be true. Then I felt so certain it was a chiari malformation based off all of the symptoms and it felt like the puzzle pieces fit but an MRI of just my brain (not the neck or spine) and a catscan said that I don't. The doctor at the hospital told me that I don't have a chiari malformation because the catscan would have picked it up because it's picked up Chiari malformations in people who didn't even have symptoms. People on here have told me not to rule it out until I have an upright MRI though because that's what the golden standard is for diagnosing a chiari malformation. Either way whatever being wrong being related to my neck and the back of my skull area have been the most suspicious thing ever since I found out I had dysautonomia. I do know that whenever I feel a greater pressure in that area I'm normally a lot more sick. I need to look into other things related to this area of the body and things similar though. It could be just that I have a really screwed up neck and I have dysautonomia, or they could be related, but I don't really have anything else to go on anyways.

2. My doctor suspected Myotonic Muscular Dystrophy at one point after doing that finger test for myotonia. He never looked into it further and he's the same doctor who dropped me yesterday so I'm not going to look into this unless I get another symptom that points towards it. I don't have that characteristic hollow face look, I don't have cataracts, and I don't have insulin resistance which are some of the symptoms so I've never looked into it further.

3. I was taking creatine powder for 6 days and felt a little better and I started craving it really bad ever since then. I crave it like 20-30 times a day, no lie. It is a type of supplement that most people put in water and I just sit there and lick it and want more even after I've taken my dose. It's like pica for creatine powder or something lol. My husband has been suspicious of mitochondrial disease ever since.

4. The liver enzymes that showed up really high once, but were normal a few months ago when I was in the hospital.

My biological mother has MS so I probably look into autoimmune diseases.

Basically I have nothing much to go on. I have a gigantic list of symptoms but unfortunately most of them can be said for dysautonomia and so nothing really stands out except the four points I mentioned. Besides the neck pain/back pain getting MUCH worse around the time I got sick nothing stands out about the time I got sick. I wasn't in a toxic area, I didn't get sick with a virus or anything, I didn't have an injury or surgery or pregnancy or anything around that time. I really doubt the Myotonic thing and have only kept that on the list because it was brought up at one point and considering I don't have much to go on I shouldn't through out what I do have.

@Sue 1234 It's funny that you say that because about a month and a half ago I was reading about copper levels and it seemed relevant to me. It felt like I should really get them tested but somehow with everything else that's been going on that thought went out the window. Thank you for reminding me. I will put that on my list of things to do if I ever get a doctor who is patient and willing to look for my cause rather than just drop me.

@dkd No, no, not at all. Please, I want suggestions. I feel so lost on the whole situation. My doctors have given up on me and I'm getting progressively worse at a fast pace. That doesn't look good as far as my primary condition goes. Tbh I'm not really sure what they checked me for. I really wish I had these records because none of them have done anything to help me and I need to know what things to cross off my list of possibilities. I know they checked me for infections, hepatitis, vitamins, electrolytes and all of the basic obvious stuff. If it's not an obvious test than they probably didn't check me for it. I know they checked me pretty extensively as far as the liver goes though so if any of those would elevate my liver enzymes than they probably did. Nobody has really helped me try to find the cause of my dysautonomia though. I'm not sure who I should go to for that that will sit there and help me cross things off a list of causes of dysautonomia. I don't know what kind of specialist to see. All of my doctors dumped me and my neurologist is only interesting in finding out what's going on with my heart rate.

I just looked it up and apparently you are suppose to do a hair mineral analysis for heavy metal poisoning, so I haven't had that done if that's how you test for it. I looked up the symptoms but nothing really stood out. All of the symptoms I have are also dysautonomia symptoms. It's really hard to find the primary cause when you already have a laundry list of symptoms because you don't know what's what. As far as the virus thing I'm not really sure. From what I understand most people get sick with a virus and than develop dysautonomia very shortly after. The last time I got anything but a common cold was about 3 years ago when I got strep. I got sick with the dysautonomia about a year ago though so that doesn't really make much since. I will say that I got shingles when I was 12 and than again when I was 16 which doctors found very odd. Most people don't get them until they are old anyways, but I got it twice as a teenager. That was nowhere near when I got sick though either (almost 5 years ago.)

One of my liver enzymes was 405 (or 407 something like that) and the other was 836. Everything else was normal though. Like bilirubin was normal. They did an ultrasound of my liver and a bunch of tests on my liver and nothing showed up abnormal except those 2 numbers. I've been to the hospital 4 times in the past year though and that was the first time they ever said anything to me about my liver enzymes being high. They even said that to me. They said my liver enzymes were fine in the past. I'm not quite sure how they go from okay the past 3 times you went to the ER to 20 times what it's suppose to be to where you freak everyone in the hospital out. I would have to wash down like a bottle of tylenol with a bottle of vodka for a few days for it to change that quickly. I was in the hospital for three days and on the third day my number had dropped to 790 something and they let me go because it was slowly dropping. I haven't had my numbers checked again because I'm not sure if it's important or not. If it's normal again, or near normal than I still know nothing except why did it go so high to begin with. My husband had me taking a supplement to gain muscle but I was taking a low dose and it was only for 2 weeks (leading up to the hospital) but he said that it normally only elevates your liver enzymes slightly and that at most if I were taking a high dose for several weeks that it MIGHT go up to like 150-200 but he said he never heard of anyone's going that high, especially on such a low dose for such a short period of time. It means that either there was something else going on that elevated my liver enzymes or maybe my liver is just really weak? That's why I kinda want to get my enzymes checked again to know for sure if that was it. I'm VERY careful with my liver now though. I really never though I had a reason to worry because I don't do anything bad. I don't even drink a little. Here I was so worried about my nervous system and my liver enzymes are 836. Regardless my liver enzymes definitely should NOT have responded like that.

@Juneflower Haha nothing is weird at this point. My doctor could tell me I have some kind of zombie virus and I probably wouldn't even bat an eye at this point lol. No, they haven't. What kind of poisons are you talking about?

@Juneflower if your pulse goes extremely high than it's not pumping oxygenated blood efficiently and you're not really getting enough oxygen. If you're not getting enough oxygen you can pass out, or if it's bad enough have a seizure. It's related more to the fact you're not getting enough oxygen if your pulse is incredibly high. I'm not talking about like 150 or something. I'm talking about at least 200+bpm. At least. I don't know yet how high my pulse actually gets but when I've recorded it at 185ish it doesn't feel anywhere near as bad as when it's so fast I have the seizures so I imagine it must be incredibly fast. Only tests will tell though.

@ Chaos I really hope so. It makes you feel pretty hopeless when doctors give up on you, like you can't be fixed or something.

@ Gjensen it's sad that doctors are so scared of liabilities that they will literally just drop a patient. They should at least get them set up somewhere or order more testing or something. I understand not wanting to prescribe medication to a certain extent when serious stuff is happening and they aren't sure why, but it ***** that they just gave up on me when there are more tests left they could have done. I hope everything works out for you. Good luck.

It's funny I saw this post because I have been wondering the same thing. When I first got sick and was diagnosed with Dysautonomia my blood pressure and heart rate were all over the place. They were not consistent at all and didn't make any sense. Sometimes I would stand up or go down the stairs or something and my blood pressure would bottom out and my heart rate would soar. Other times I'd do the same thing and my blood pressure would be completely outrageous and through the roof. Around early December I started working out in the Gym and later that month I started going to chiropractor which I have now quit. My blood pressure has been reading fine ever since. Here's the thing though, my dysautonomia has actually progressed a lot. I feel a lot worse than I felt a few months ago. The only screwed up vital signs we've been able to catch is that my heart rate is insane and likes to be normal at rest, but when I do something it thinks it's perfectly acceptable to go to 200+bpm to the point I stop breathing and either have a seizure or pass out.

We're really looking at that right now but the thing is I know that if we normalize my heart rate it will probably stop the seizures and passing out, but I'm still going to feel just as crappy. So, I think it's related to a certain point. In terms of passing out, seizures ect. your vitals will usually read as something being off ( in my case it's my insane heartrate), but besides that you can feel like absolute crap and have your vitals read normal. I miss when my blood pressure was insane because I wasn't having seizures back than and people took me more seriously. I feel way worse now, only I look a little dumb when someone takes my vitals and my blood pressure is normal.

My husband and I seriously doubt this has anything to do with my lungs. It seems like all of this seems to be because of my heart rate acting like it's on crack and going to crazy extremes to the point It's pumping so hard that I'm not even getting any oxygen.

I've lost 2 doctors in 2 days. Yesterday my regular doctor told me he doesn't know what to do with me anymore and I need to see the neurologist from now on. Today my psychiatrist (who has been conversing with my doctor) told me that she doesn't want to see me anymore either. Apparently when I went to the hospital a few weeks ago it freaked all of my doctors out because everyone whose seen the records doesn't want to treat me anymore. Everyone's too scared to prescribe me anything too because they don't know how my body will react. I have seizures and pass out a few times a week, my liver enzymes were 836 for no apparent reason (they did all of the tests and I don't have hepatitis and my liver is fine but they don't know why it was so outrageous), and my heart rate was all over the place in the hospital. All of the obvious tests like an MRI of just my brain and a catscan came back fine though so the only thing they can think to do is to look into the heart rate stuff and see why it's doing that and making me have seizures and pass out. Everyone wants my neurologist to deal with me from now on. Depending on the results of my holter monitor my neurologist might send me to a cardiologist so depending on what the results say I will ask about the electrophysiologist because they look helpful.

My husband and brother in law are both trained in CPR and I normally try to yell to someone whenever I start to feel ill and like a seizure is going to come on so that someone can watch me and make sure I'm okay. I've gone over little signs with everyone in the house. Like If I call on the phone but don't say anything it means to come upstairs immediately because I'm getting sick. Or If I yell someones name in a panic but don't say anything aferwards it means to come upstairs because I'm going to get sick. I've already taught him not to cuddle with me or hug me during a seizure or fainting spell though. He thought it was comforting but I already feel like I can't get enough oxygen when it's happening and need my space. So now he sits at the end of the bed or by the stairs or wherever it happens to watch and make sure I'm okay. He says I always start breathing again though but if I don't start breathing again shortly after he will do CPR.

@June that's how I feel. I don't want to put all of my hopes into Vanderbilt just for them to tell me what I already know. I guess we'll just have to wait and see. Good luck with the specialist appointment. I hope you get some answers for your daughter.

@Gackedo thankyou. I did. It was so nice to get out of the house and not be the sick girl for 2 hours. Wow, I'm really hoping you're right and it shows some concrete evidence about what is going on with me so that we can try to fix the problem.

@Sue1234 I just googled what a electrophysiologist is and I think depending on what my tests say and what the neurologist says it looks like something I should ask the neurologist about as far as referrals go. ty

@gjensen Thank you, that message was so sweet! I really hope I start to get better soon too. I hope everything works out for you also. My husband and I are actually going to a movie tonight because I've been so depressed and stressed out about being sick and stuck in the house all of the time that he's hoping it will cheer me up to get out of the house for 2-3 hours and do something fun.

@Chaos I don't have a cardiologist or pulmonologist although depending on what my holter monitor and echocardiogram say when I get them done I might be referred to one.

@Dkd I've never heard of an electrophysiologist. What do they do? Are they like a special kind of cardiologist?

@Freaked and @dkd I'm not sure if I'm more worried about it telling me I'm fine or if I'm more worried about it telling me I'm not fine. At this point I wish something would show up with blinking lights saying "Over here. I'm the problem. Now you can fix me" It would be especially nice for my husband to look at it when I'm having a seizure or passed out for him to know that I'm okay. Since I stop breathing and turn blue during them he's sometimes not sure what to do. I think it would be good for him to know when I'll be okay and when we should go to the hospital.

Does anyone know anything about this though? Is there a chance that this could turn into respiratory failure or is that something entirely different?

@Sue1234 what kind of specialist do you think I should see for this? Does it sound like it could be something else? My neurologist kind of brushed it off as part of the dysautonomia but I'm getting progressively worse and nobody seems to be really doing anything to help me.

So, my general doctor told me he doesn't know what to do with me anymore. The neurologist is going to have the echocardiogram run and holter monitor but it seems like he doesn't even know what to do with me. Looks like my neurologist might check into a few things but he's trying really hard to get that referral to Vanderbilt because he really doesn't know either. My catscan and MRI of just my brain came back normal so because of this apparently the doctors here have no idea what else could be causing it. I see so many things on here about the causes though and am upset that they aren't doing more. Sorry this was more like a mini rant. I just feel like they keep referring me to different doctors but at the end of the day nobody knows what to do with me. My doctor doesn't want to give me anything because he doesn't want to mask any symptoms so they don't know what's going on.

I live about 20 minutes away from Nashville so Vanderbilt was the obvious choice. From what I read on here it takes about a year to get in there. Is that correct? Is it worth it though? Are they actually going to search for what caused my dysautonomia or are they just going to run a few tests and tell me what I already know, that I have dysautonomia. I've looked through some of the posts on here about Vanderbilt but I'm confused on this. Do they actually look for what caused your dysautonomia? I don't want them to run a tilt table test and just be like yep you have dysautonomia but good luck from here on out. That's not worth waiting a year for. I want them to find out what caused my dysautonomia, if I have a subtype, and what I can do to feel better. I'm just so upset. I feel like I'm getting sicker and sicker and nobody knows how to help me.

@Corina I went to the doctor today and he basically told me he was at a loss what to do with me at this point and that I need to talk to my neurologist for now on about this because he doesn't know what to do anymore. My neurologist is going to run an Echocardiogram and a 24hour holter monitor but beyond that he doesn't seem to really know either and is having me referred to Vanderbilt.

@gackedo + gjensen thank you I will look for one of those. That sounds like it will be very helpful in helping me figure out what is going on with my body.

I know that acute respiratory failure is one of the few listed causes of death for people with dysautonomia. I don't know if I'm just being paranoid but I don't know if I should worry about this. As some of you may know my dysautonomia has progressed a lot in the past few months. The slightest things make my heart go so crazy that I stop breathing, turn blue, and either pass out or have a seizure. I feel like I can't get enough oxygen.

This is what I found on healthline "The symptoms vary according to how healthy you are. But most people acute failure of the lungs with low oxygen levels will experience:

• inability to breathe
• bluish coloration in your skin, fingertips, or lips
• passing out

When carbon dioxide is high, your heart rate may increase. You may be confused about your surroundings, who you are, and others around you"

That's exactly what happens to me so I'm worried. When does it get to the point that you actually die from it? This happens to me several times a week now. Is this related to my heart rate like my neurologist was saying or is there some kind of test that measures oxygen levels and stuff that I should get? Please, I'm really worried. The slightest things are causing this to happen now. Could I actually die from this or will I always start breathing again? I stop breathing for a minute when I have the seizures and I'm worried that one time it will be too long and I won't come back to it or something.

@Katybug thanks for the info. I will look into it further than to make sure. I have an appointment with my regular doctor who is a lot more open to this stuff May 1st and I will bring it up to him. The rest of my doctors are such know it all's when they don't even know much about dysautonomia. My regular GP is very open to my suggestions and investigates anything I think could be wrong.

@IceLizard that's interesting because I try not to sleep more than 8hours because of all of those stupid things that tell you that you need 6-8hours of sleep and not more or less, but I always feel like I need more. Maybe I will try to go to sleep a little earlier so I can wake up a little later and allow myself to sleep 10-12 hours if I need to. Normally I figure it really doesn't matter because I'm exhausted no matter how much I sleep but maybe if I actually sleep more I'll feel better. It's worth a try. Thanks.

@Katybug I haven't. I know it's the usual but they were telling me if I had one the catscan would have shown it and all that. Do I really still have a chance of having it since I haven't had an upright MRI?

@iceLizard wow that sounds just like me! How do you realistically sleep 20 hours a day though?Did you do that for just a little while or do you have to keep up with it? How much does it help? That's really interesting that it helped. I wonder the science behind it.