trappedat20

@Katybug aw I'm sorry. Do you crack your neck or anything? If you do please stop. I don't have EDS but my neck cracking up the connective tissue in my neck and made it really hypermobile. I don't have EDS, so I can't give you specific advice there, but you should ask around and see if there is anything you can do. Whenever the tendons and ligaments in my neck heal (they are torn from this) I'm going to start weightlifting to make my neck stronger. I'm already weightlifting to make the rest of my body stronger, but I can't do the shoulders or anything that effects the neck because it hurts really bad when I start to do anything that puts pressure there because it's all torn. My husband use to have really bad scoliosis and had to see a chiropractor weekly for maintenance after his treatment, but he started weightlifting and it made his back muscles so strong that they stayed in place. I don't think that would work in the case of EDS though I'm just mentioning it. You should do some research and see if there is anything someone with EDS can do to make the neck muscles stronger and hold them in place better. Good luck! @AshleyPooh I understand the skepticism behind it because even my chiropractor said that there are a lot of scam artists out there and imho I think it's really sad. Chiropractic, when done right is really amazing and it's amazing the things it can fix. There are a lot of corrupt chiropractors out there unfortunately and my chiropractor even explained the most chiropractors will only treat you until your pain goes away, verses fixing the problem. Or there are chiropractors who are so money hungry they talk more about that instead of your health and that's when you should run. I'm debating listing the name of my chiropractor because I don't want it to be considered that i'm promoting it or anything and get in trouble. We have a miracle board at my chiropractors office and people write all sorts of amazing things that have happened because of it. I could already write on the miracle board with what has already been accomplished, but I'm waiting until I'm done with treatment and know how much will get fixed. It's crazy what a pinched nerve can do. There's pictures out there on the spinal cord and what areas go towards what body system, and where ever that pinched nerve is will effect that body system. I'm not explaining this that great, but it's true. I heard this story about a woman at my chiropractic office (I watched it on a video) who was trying to get pregnant for 10 years and it turns out she had a pinched nerve around the part of the spine that controls reproductive help. She got it unpinched and wound up getting pregnant that month. There was another story about a kid who they thought had horrible ADHD that was unresponsive to medication and he was getting into all sorts of trouble and it turns out his neck was curved the wrong way like mine, only his was squashing the lower part of his brain that controls reasoning and stuff. I forgot what it was called. After a few months of adjustments when his neck started to curve the right way his supposed ADHD went away and he went from failing in school and doing drugs and being a troublemaker to getting good grades and staying out of trouble. There's plenty of people who had blood pressure problems disappear and migraines disappear. Doctors just want to give you medication to treat the symptoms, but if there is a pinched nerve that isn't going to help you at all, and it can be dangerous if you don't get it fixed. Now, I know right now I sound like some sort of enthusiast or something and it's not that I think if you go to a chiropractor it can fix any problem a person has. I just think that chiropractic is very underestimated and people don't realize how important your spinal cord is. It deals with the nervous system and we should all know what it's like when your nervous system doesn't function properly. So if you have a pinched nerve or if part of your spinal cord or brain stem is being squashed it can literally effect any one of your body's functions. Sorry for that long story. I'm really not some sort of cult person lol. I didn't even start seeing a chiropractor until about 2 weeks ago, but I know from experience it works. Okay so this is a part that I forgot to mention. Part of what is going on with my neck curve being all screwed up is it's pressing up against my Medulla oblongata. Which your medulla oblongata controls cardiac functions, respiratory functions, autonomic functions like breathing, heart rate, and blood pressure. All of those things which are compromised with me and with someone with dysautonomia. So even if I didn't have pinched nerves, which I have several pinched nerves,it would be screwing with me anyways for that reason. I'm not sure if I can post links but go look up the medulla oblongata. If you look up it's functions it controls all of the things that a person with dysautonomia lacks. Oh and it also controls like parasympathetic and sympathetic nervous systems, and the vasomotor center and baroreceptors. My point is don't knock it. Maybe someone isn't having a problem caused by their spinal cord, but what's the harm in checking when it could very well be the thing that gives you your life back? If there is any possibility that it could be caused by a problem in your spinal cord than research and look around for the best chiropractor in your area. Do your research and look around and maybe even talk to people who go there. It's your health. Don't even mention the dysautonomia to them right away so they can't try to make it seem like it's the cause if it isn't. I told my chiropractor I had dysautonomia right AFTER he told me about the medulla oblongata and where my pinched nerves were. It fit perfectly for me and since I didn't tell them before I had no doubt in my mind they were telling me the truth. I agree with you that half of them are quacks, and half are legitimate. My migraines were caused from that because after having a 24/7 migraine all of the time, I went to my first adjustment and they disappeared. If I were you I would pay out of pocket anyways. Insurance only covers the first 20 adjustments. I'm paying out of pocket and while it's financially stressful now, it's worth it for me to have my health back. I really would wait if I were you. That's what I did and look where it got me. I started getting the pain and migraines when I was about 15 and I'm 20 now. Every time I would get a massage they would tell me I really should see a chiropractor. I always meant to but it never felt important enough. It wasn't important enough to me until I got so sick with dysautonomia that it disabled me. If I had kept waiting it would eventually have gotten to the point it was irreversible without surgery and the nerves would have been damaged. I already have a ton of problems in my neck that would have been prevented had I gone a lot sooner. Update: I haven't had an adjustment since I last wrote, but I was able to do a SHORT STANDING WORKOUT yesterday. It was really pathetic and short and I took a break, but I did it and that is just amazing to me! I did Turbo Jam: Learn and Burn. To those who don't know what it is it's a short 10 minutes explaining the moves and a short 16 minute workout. I took about 3 breaks that lasted 2 minutes during it, but I was able to complete it which is great because I was able to do a standing workout.It wasn't until recently that I was able to even do sitting cardio at the gym. I'm hoping somewhere in my treatment I will be able to do my old 45 minute- 1 hour workouts again. Not only that I've been cleaning for the past few days. I've been cleaning everyday, and while I'm not able to do what a healthy person can do, please note that I haven't even had a good enough day that I've been able to work on cleaning for even 1 day in 2-3 months. The fact I've been working on cleaning about 4 days in a row and I haven't had a crash says something. I've been working on the bedroom this whole time and today it will be finished. A healthy person would be able to do it in a day if they worked at it all day, but the fact that this room got pretty gross from me being too sick to work on it and my husband not knowing how to clean up after himself and being too busy with work to help me, really says something. I'm such a neat freak and being too sick to clean the room has been dragging me down for a while now. I can't wait for it to actually be clean. If I feel okay enough I'm going to do the bathroom today too, if not I'll do it tomorrow. Like I said the landlord is coming to inspect the house Tuesday and it needs to be done, so the fact I have a few extra spoons is great.

TREATMENT IS WORKING! Omg guys the treatment is actually starting to help. I only did 5 adjustments and I'm standing longer and able to do a little bit more physical activity. 2 days ago I did a lot of laundry, a little bit of light cleaning, went to the gym, and took a shower ALL IN THE SAME DAY! Normally I only have like 1 spoon and it's broken and I can only do one of those and I'll feel like crap for doing it too. I feel like treatment has given me an extra 3-4 spoons. Yesterday I did some cleaning and was able to clean up an area of the room that got so messy from me being too sick to ever work on it. Today I'm going to do some more cleaning and go the gym. There's a lot that needs to be cleaned because the house is getting inspected Tuesday and my husband works all of the time and I've been way too sick. Cleaning was always way more spoons then I had. I had gotten to the point the laundry was getting like 3 weeks backed up and we were running out of spoons because it cost too many spoons for me to do it. I was also showering only like once a week and my hair started to look like I dumped crisco in it. I don't feel normal, but those extra 3-4 spoons make quite the difference between being able to do a little bit verses being able to do nothing. I've also been standing longer and have been able to stand at front counters and stuff if it's only like 10 minutes verses before when after a few minutes it felt unbearable. I did 25 minutes straight on the bicycle thing at the gym 2 days ago. A month ago I only was able to do 5 minutes before I felt so sick I had to get up. When my heart started to speed up too much to the 170's (the 170s feel like crap for me) I would just slow down but I never stopped. I really feel like it's starting to help me out. I have a long way to go but if I'm able to do a little bit more after 5 adjustments that's pretty good since I have 72 total. My neck is starting to feel a lot better too. It use to kill me before and now it barely even hurts. Oh and guess who didn't even experience pre-syncope while cleaning? It's been a really long time since I've even had it in me to do any cleaning but when I did I would experience pre-syncope and normally wound up passing out. It's just the beginning and maybe I'm jumping the gun but my husband and brother in law noticed it so it must be helping. The fact that my neck feels a lot better makes me think that either enough pressure was taken off my brain and spinal cord or something got unpinched allowing me to feel a little bit better. I can't wait to get more adjustments. I'm hoping I will be able to make a full recovery. Wish me luck guys and don't give up hope that you can fix this.

Yep, happens to me too. This is why I don't technically meet the criteria for POTS and only for dysautonomia. My blood pressure is all over the place and never makes any sense at all. Try to record your b/p before/after doing different activities like sitting, standing, going up/down stairs ect. to see what it does after these activities and if it consistently does the same thing. Another thing to pay attention to is what you heart rate is in reference to your b/p, and to keep an eye on your pulse pressure (the difference between your diastolic and systolic.) This will also help you if you experience syncope or pre-syncope to know what your b/p and hr are doing around he time this happens. Sometimes though, if you're anything like me your b/p and heart rate might be completely crazy and inconsistent and not tell you anything. My doctor originally tried to have my measure my bp 4 times a day but that told me absolutely nothing because it would just be so different for no reason, so I tried doing little tests where I took them before/after doing certain things to see how my body reacted to actions. Good luck! I wish you the best.

@Katybug that's interesting that we have a lot of the same problems with our necks. Have you looked into getting the curve back into your neck? I now realize how important it is to have that curve because it causes so many other problems in the neck when you don't have it, and it's kind of like a chain reaction. I hope everything works out for you. @Yogini the coordination issues came from my neck being screwed up and not the dysautonomia. I don't have POTS. I have all of the symptoms of POTS and all of the problems that people with POTS have, but my blood pressure and heart rate are completely insane and never do the same thing, so I don't have POTS. I'm currently just diagnosed with dysautonomia and vasovagal syncope. Tbh part of the reason that I'm hesitant in trying to figure out what I'm going to do with my life once I start to feel better is because I don't know how much better I will feel. I know that the adjustments will make a difference because they already got rid of the migraines and the sensitivity to light and sound, but I won't know if I will be 100% better until I'm done with treatment I guess. Theoretically it should be cured, but I guess when you're dealing with the nervous system and dysautonomia it's all a toss up even when you find your primary cause. @Marigold I'm so sorry that you had a bad chiropractor. This was actually something I was worried about because I believe that chiropractors can actually be very useful if they are good chiropractors. Unfortunately, there are a lot of bad chiropractors out there which is where the mistrust of chiropractors comes from. My husband and I did a lot of research to find the best chiropractor in the area because we were worried about this. Especially with all of the issues with my neck we knew if I had the wrong person touch it that it could be very detrimental to my health. I immediately got a very good vibe from these people and I really like them. They even teach you how to read your own x-rays and stuff so that you know what you are looking at and they do progress x-rays and evaluations so that you can see the progress instead of just taking their word on everything. The fact that they even told me my back really wasn't that bad at all made me trust them more because they didn't try to lie and say my back was bad. They told me I just had minor scoliosis in my back and it wasn't really effecting anything but that my neck was really messed up. I could see and feel how messed up my neck was and had previous x-rays and knew they were telling the truth. Idk I just got really good vibes from them. If you get bad vibes from a chiropractor or if they are more interested in your money than your health than run as fast as you can. As far as pain there are two types of pain. It's very common and normal to be kinda sore for a few hours after your adjustment. I always feel a little sore after my adjustment and ice it when I get home and the next day I wind up feeling even better. There is also bad pain though. If you feel like you are getting worse instead of better and are experiencing more pain or bad pain then that is not common. There is a big difference between the pain I felt when my neck was really screwed up verses the slight amount of discomfort I feel after my adjustment. I would not trust anyone who did not take your concerns seriously either. It is your health and your back/neck and if you feel something is not right then you should be able to tell them that without them trying to tell you it's normal without looking into it. I'm very sorry you had a bad experience and I wish you the best. My Update: I have now had a total of 3/72 adjustments. I have a really long way to go and a total of 9 months of treatment. As far as my symptoms go the only symptoms that have gone away are still the migraines, and the sensitivity to light and sound that happened at the first adjustment. I have barely had anything done yet though. It's just the beginning. I'm really not so sure how the whole symptom thing is going to work either. If my symptoms will lessen and then go away, if they will go away mainly at once, or if they will go away symptom by symptom. I'm not completely sure if that is all of the symptoms that have gone away, maybe there's a minor one that I'm not thinking about, but the migraines and sensitivity to light and sound were so awful that I noticed they were gone right away. My neck feels a lot better too. I still have neck pain, but it's not the unbearable I want to just cry pain that I was experiencing before. It was awful before. It's bareable now. There haven't been any negatives.There is something weird I experience after my adjustments though. I noticed this a little bit on the second adjustment and on the third adjustment it was a lot more noticeable. After my 3rd adjustment my ears felt like they had a lot of built up pressure (like when you're on a plane or have too much earwax), which was relieved by massaging the pressure points in the back of my neck after a few hours. I wonder if it has to do with all of the built up pressure in my neck (remember the neck cracking and hypermobility stuff) being moved after an adjustment. My husband say I'll probably experience weird symptoms after an adjustment because of that disc moving around and stuff but I'm not sure. Either way I will keep you guys updated. I have A LOT of built up pressure in my neck, so I wouldn't be surprised if it's just because of adjustments moving that pressure around because it's relieved after massaging the pressure points. Also I have my first follow up x-ray in just my neck in 5 weeks, and my first full x-ray evaluation in 3 months. I'm very eager for the x-ray in 5 weeks. I want to know how different my neck will look and if I will see any progress that early on.

@agtaylor wow, I'm glad to know that there is someone else who's dysautonomia could be caused by that! You should def. look into that and think about going back to your chiropractor. Good luck I have still only had one adjustment, although I have my second one today and I will def. let you know what happens. So far my migraines have gone away, the ringing in my ears,and I notice I'm a lot less sensitive to sounds. My husband was able to play the guitar and listen to his heavy metal in the same room as me for an hour and a half. That never happens because I'm so sensitive to sounds that we have to keep music down really low, and when he listens to heavy metal music it feels like there is too much going on at once and I don't know how to explain it except to say I'm sensitive to sounds, smells, and lights. As far as lights I think I'm even less sensitive to that now that I think about that. I say this because normally driving in the car at night bothers me because peoples headlights feel so much more intense than they are and really bother me, but I notice I haven't thought about this in the car the past few nights. Also we have really good speakers that play really loud and we were able to watch Lord of the Rings without it bugging me at all. This whole not having a migraine thing anymore is awesome too and I'm sure contributes to sounds and lights not feeling horrible. I still have a billion symptoms left but for only one adjustment it feels pretty hopeful. I figure in the first 3 months most of the changes will happen and I will know by then whether it's working or not. I don't expect to have less and less symptoms everytime I go as there is a lot to fix in my neck, but I'm glad the migraines went away after the first adjustment because 24/7 migraines are so unbearable. @katybug That is really interesting! I've been looking it up since I saw you mentioned it and I will def. keep that in mind. Thank you. It's funny because a lot of the things mentioned with that word are things like EDS and Chiari and things that are mentioned so commonly among the Dysautonomia community. The ironic thing too is that I cracked my head open a year and a half ago and fell directly on the back of my head. I was getting out of the shower and slipped and fell head first and hit my head on the back of the tub leaving a dent on the tub. This was August 2012. I went to the hospital to make my head stop bleeding and with a concussion. While I don't have EDS (at least not that I know of lol. nowadays I feel like anything is possible), I do find it interesting because I know my neck is constantly in a state of hypermobility. The fact I was cracking my neck about 40 times a day everyday for the last few years made this worse and worse. It wasn't until I went to a chiropractor that I found out just how bad cracking your neck is for you, but I felt I had to because my neck would stiffen up so much that I couldn't even move it, and thus began a vicious cycle. I've never dislocated anything or been really flexible or anything that would lead me to believe I have EDS. While I do find this interesting though because of the hypermobility in my neck. There is so much build up pressure in there right now that I'm barely moving it because it cracks every time I move it. The fact that I had to crack my neck so many times a day just to be able to move it should have told me that I need to stop messing around and go to a chiropractor years ago. One thing I find interesting is I just recently (as in the past few days noticed something.) My back pain isn't really back pain at all. After being told that I have a minor curve in my spine and my scoliosis isn't all that bad, and that my neck is the main problem part of me was like well that makes sense cause I don't always have back pain, and the other part knew that when I got back pain it was really awful. 2 nights ago I got really horrible back pain, but noticed that it was a painful stinging feeling traveling ALONG MY SPINE. While I always knew it was my spine I noticed it started with my neck and that it wasn't really my back being messed up that was the problem, it was that sometimes my neck liked to tell my spine to start torturing me. Around the time I was working it was really hard to differentiate things because I also had muscle spasms everywhere, which I just assumed was that. My husband massaged my back though when I first came here, and he's kept the muscle spasms in my back away. Not only that, since the curve in my spine isn't that bad it wouldn't make sense for that to give me pain either. Unless, my neck was sending the signal to my spine to start hurting. Seeing how messed up my neck is that is really possible and it seems like it was just my neck all along. Also, the curve in your neck is there for a reason so if you don't have that curve or it's curved the wrong way all 12-15lbs of your head are now crushing your neck and spinal cord. Imagine placing a bowling ball on top of your head and seeing how that feels or if it causes pain.

Ever since my first adjustment (partly because I'm no longer allowed to crack my neck so I notice all of the things that bother me) I've noticed one of the things that hurt my neck is driving in the car with my husband. Today I was actually doing pretty okay when I went in the car. Have still had yet to have a migraine since getting my adjustment. My head gets thrown forward a lot (only like an inch or so but I still feel it in my neck) and I noticed it making my neck hurt worse. My migraine and the ringing in my ears started to come back a little bit, but not only that even though I was previously doing pretty okay when I got in the car, I couldn't even walk into stores because I felt so dizzy, my heart was racing fast, and I just felt very fatigued all of a sudden. Maybe it's a coincidence, but I've thought my neck was involved for a while now. I guess I won't know though for a few months whether it really is or isn't the cause. It's one of those things where I would have had to get it fixed anyways though. I'm just really hoping it makes the dysautonomia go away. @badhbt I'm glad you are feeling better from the fusion and I hope you find the cause of your POTS. Good luck!

Thanks. What are you skeptical about?

Thank you! Best wishes to you too

I don't know if I mentioned it but I always suspected a link between my neck/back pain and my dysautonomia. Around the time my neck started hurting wayyy worse was when my dysautonomia started. Not only that whenever the pain gets excruciating, my dysautonomia symptoms will get a lot worse. I mentioned this to my doctor and he took a look at my bad and neck and said it was a good possibility and had me get x-rays. The nurse called me back and told me that I didn't have any pinched nerves and they only saw the scoliosis, and muscle spasms in my c-4. I started to lose hope and feel hopeless since I felt so certain this was the cause. So I was endlessly looking for the cause of my dysautonomia, which felt like a hopeless end of possibilities. When I had my doctors appointment on the Thursday before Christmas I found out what the nurse told me was wrong. The doctor said there is a good chance I have pinched nerves and that I have a degenerative disc in my c4 and that my c4 is starting to twist. This gave me a tiny bit of hope and so I went to a chiropractor on Monday. First off let me say that I trust this chiropractor completely. They are really good people and aren't like most chiropractors. I know they are telling me the truth for several reasons I won't get into so that I don't have to make this longer then it has to be. They ran several tests on me on Monday. We found out that the coordination on my left side is completely awful. He was having me touch my hand to my nose and stuff and I was thinking "wow this is stupid. of course I can do this" but I was awful! Not only could I not touch my finger to my nose on my left side, but I didn't even wind up touching my face. This happened for several tests. I didn't have good coordination on my right side of the body, but my left was a lot worse. You are suppose to have the curve in your neck for many reasons. Not only did I completely lose the curve in my neck, but after it straightened out completely it started curving in the opposite direction! It's called reverse cervical lordosis. Because of this my brainstem and spinal cord are being crushed, it caused my c4 to start twisting, a degenerative disc in my c4, and for my nerves to be really pinched. I was looking at the x-ray and I could see how messed up my neck was. When we got home I had my husband and brother in law feel their neck and then mine, and I did the same, and my neck doesn't feel like a normal neck at all. He told me that it was causing my dysautonomia (he actually knew what it was) because of the pressure on my brain and spinal cord and because of how pinched the nerves were, and the nerves that were being pinched are the same ones that would give me my symptoms. Yesterday I had my first adjustment and the appointment where they discuss the treatment plan. After they were able to evaluate my results in forming the treatment plan, it was also discovered that I had bad arthritis in my neck and torn ligaments and tissue. They ran more tests then the doctors did btw and the doctor didn't have an x-ray of my neck from the side for some reason so they weren't able to see that it was curved the wrong way. They told me they were going to be honest with me that my back isn't that bad. I have scoliosis in my back but the curve isn't that bad and it's not causing me any problems. My neck is really messed up though. When I asked if any nerves were damaged he said that right now they aren't and they are just being pinched, but if I let my neck get worse they will be. This was not a scare tactic. I can feel how messed up my neck is. I have a migraine 24/7 and I'm always feeling nerve pain in my neck, and it's always super stiff and painful. You shouldn't be able to feel bad nerve pain in your body unless something is wrong. I'm suppose to go 3 times a week for a total of 72 adjustments. Then it's just maintenance after that. He said most people see a significant improvement in symptoms caused from the neck being like that after 3 months. I can't wait to start feeling better! After my first adjustment although I'm still in pain, I do notice I haven't had a horrible migraine or ringing in my ears. I normally crack my neck probably like 40 times a day because it stiffens up so much I can't move it. Even after cracking it I still am in a lot of pain, but it allows it to not be so stiff that I can't move my head for a little while (and at like 40times a day a little while isn't very long.) He said I have to stop cracking my neck though because it makes it worse, so now I'm feeling all of the stuff I normally don't allow myself to feel, but I know it would be a lot worse if I hadn't gotten that adjustment yesterday. I'm just really excited. I thought this was the cause from the moment we found out I had dysautonomia, but after the nurse called I lost hope that we would ever find the cause. Then when I went to the doctor and found out that what she said wasn't true I had a little hope again, and after going to the chiropractor I was like Hallelujah! The more stuff they told me was wrong with my neck the better lol. That is completely tangible and fixable. Guys, don't lose hope!! If you're still looking for your primary cause keep looking and don't listen to anyone who tells you to stop looking for it. Also to anyone who doesn't know their primary cause but has any kind of back or neck pain I seriously recommend getting it checked out. Do your research and find a really good chiropractor or something and have it looked at. For all you know you could have nerves being pinched or your neck could be all messed up like mine. Good luck to everyone still searching for their primary cause.

That's interesting. I'm glad to know others didn't have good experiences with swimming because I thought I was crazy or something. I went swimming yesterday and almost passed out getting out of the pool and decided that was the last time and that I was going to stick to the gym. That make ssense about the blood not pumping as well. Warm water does make me sick, but the tai chi sounds fun. I have been very persistent with my workouts too as of like a week ago, so I'm hoping it pays off

Oh wow I never knew that about the calves. Maybe that is part of the reason weight training helped. I will have to make sure to do more exercises that focus on the calves Thank you for this information

It's 82 degrees at the YMCA. They say not to go over 80 degrees, but I figured 2 degrees wouldn't really make a difference. Unlike showers where I feel sick in the water though and slightly better when I'm out, I feel better in the water, and much worse when I'm out.

Thankyou. I think i'm going to just do both this week and see if swimming continues to make me feel worse, or if weight lifting continues to make me feel better and if swimming isn't helping but weight lifting is I'll just stick with that.

Okay so I know this seems like a dumb question since they tell you to swim and everything and that it's a great exercise for people with dysautonomia. I've been swimming lately though and while I feel a lot better in the water, the second I get out of the water I feel about 3 times worse then I did before I got in. It's like gravity slaps me in the face once I leave the water. I haven't noticed swimming making any positive difference though. Today I went to the gym with my husband and went cycling and did a ton of strength training machines (sitting down.) I felt sick while doing them, but I took breaks and kept pushing myself and we wound up staying at the gym for like an hour and a half. Everyone has commented on how much better I have been the rest of the day. I'm standing for much longer periods without getting sick and was even dancing around the house. I got quite a bit accomplished today for me too. I went to the YMCA, took a shower, cleaned the guinea pig cage out, and did laundry. Which normally I can only do one of those in a day. I also drank a protein shake after my workout, but I feel a lot better having done that workout. My original plan was to swim 30minutes twice a week and to go to the gym twice a week and do yoga once a week. I can't do all of that already btw, I was going to build up to it. Now I'm wondering how great swimming is though. I don't know if I should stick with the swimming or just replace it with the gym. The gym makes me feel worse while I'm doing it, but better the rest of the day. While swimming gives me temporary relief but the moment I get out of the pool someone has to help me out so I don't pass out and I'm bed ridden the rest of the day. Granted today was the first day I went to the gym and I am very very very surprised I was able to do it. With the exception of having gone swimming a few times recently (I just started last week) that was my first real workout since May. I'm completely surprised I was able to do it. It's weird because I didn't feel progressively sick while working out like usually. It was just the same amount the whole time and afterwards I felt better. I don't know I need some real advice on this. Do you guys think I should stick with the swimming or just switch to the gym and doing strength training? Is there any scientific facts that support what I'm saying? I feel like everyone says the opposite but I wonder if it's like my body gets a break from my messed up autonomic system when I'm in the pool, but when I'm out it's like I'm having to readjust all over again. Kinda like an astronaut landing on Earth. The pool is my space and stepping out of it is like walking on to Earth for the first time in a while. That sounds really weird but that's how I feel. I know swimming has really good benefits and I got really excited about starting swimming and really into the idea, but it kills me the rest of the day and makes me feel horrible. The gym actually made me feel better afterwards. Since It was my first day at the gym I don't know how long these benefits last, but I was standing longer today after my workout. Which is interesting because we went to Aldi's (a grocery store) right before we went to the YMCA and I almost passed out and my feet turned bright red because I didn't have a wheelchair then. I felt awful and I can't believe I even made myself go to the YMCA afterwards because I was dizzy and sick and didn't feel good. I went though and somehow pushed through feeling sick (I took breaks though the second I experienced pre-syncope) and then felt better the rest of the day. Not normal or anything, but better then I've been feeling lately. Normally I wouldn't push myself like that because it normally makes me pass out and has zero good benefits but for some reason I did today and it has a good outcome. Please share your feedback. I'm curious what other peoples input is and what they think I should do. Also my husband really has his hopes up and now thinks that going to the gym will somehow cure me. I know it won't necessarily cure me but can it really make a huge difference? By working out and reconditioning and eating healthy do you think I could make myself feel like 70% better or something or somewhere where I'm at a functional level?

@bellgirl . I've had dogs and cats my whole life. They are actually quite cute. They don't bond to you as quickly as bigger animals though. I assume it's because they are prey out in the wild though, that they are very skittish and scared. I think it's the cutest thing how they communicate with each other though. They love each other so much and I have to take them out together or the other will go crazy chirping and searching the cage for her friend. They're best friends and watching them cuddle and communicate is probably the most rewarding thing.

Thankyou MomtoGiuliana for sharing your story

We have a 1,000$ pet deposit where we live for dogs or cats and so I knew they were off the table until we oneday move to a different apartment. My husband knows I've been down about being sick all of the time though so about a month ago he surprised me with 2 guinea pigs. I never thought I'd be a guinea pig person but it's nice to have something to cuddle.

You should add ADHD medicines to the list. I find adderall to help me considerably. Without it I sleep all day and am so fatigued and dizzy upon standing that I'm literally on bed rest all of the time and sleeping my life away. With it I'm still disabled but I'm able to stay away during the day and get out of bed and do things for limited amounts of time.

I'm the same way and I'm glad I'm not crazy for thinking there was a link. I couldn't quite pin point the scientific reason for the link though. I notice the others with dysautonomia get worse around their periods too though and I'm thinking there has to be some sort of hormonal connection. Does anyone think that trying birth control could have triggered my full fledged dysautonomia or is that too outrageous?

I've been doing some reading and I've read a few times about there being a link between endometriosis and dysautonomia. A lot of people who have endometriosis are estrogen dominant and I heard of one women with POTS who started using progesterone cream and her POTS symptoms disappeared. It makes sense to a certain extent. You could even say that endometriosis might mask some of the symptoms of dysautonomia. People with endometriosis have long, heavy periods that can easily make people feel dizzy and lightheaded and in some cases pass out. I heard someone say that people with dysautonomia are 100 times more likely to have endometriosis. I was just curious if anyone has heard anything about this? 4/5 cases of POTS are women. Could hormones play a role? Could estrogen play a role? Sorry if this sounds stupid. There isn't nearly as much research as any of us would like on dysautonomia and though I might be grasping for straws I wanted to know what people thought. I've had endometriosis probably since I started getting periods when I was 11, although I got diagnosed at 19 and they tried me on birth control which made me so sick and moody that I only lasted 20 days before I threw the pills out in a rage. I hate the pill so much. I've had symptoms of dysautonomia since I was a pre-teen, although I was always functional and there was nothing that made me feel a need to get evaluated. Things like fatigue, constantly being thirsty, constant migraines, slight dizziness but nothing that was debilitating that made me go wow I need to get evaluated. Around 19 though I was really thinking that something was wrong with me hormonally. My mom was the same way with her periods and so she made me think it was normal. I went to an ob gyn and was told I had endometriosis and pmdd. They tried me on Lo-loestrin fe and from the first day I felt awful. I really wanted to at least finish a pack before throwing it out but I couldn't. It made me feel so awful that I only lasted 20 days. Anyways does anyone know if there is any type of hormonal link or if birth control could trigger someone with a few symptoms of dysautonomia to get much worse?

Check your pulse pressure. If your pulse pressure is high it will give you that heavy pounding feeling that sometimes is mistaken for a fast heart rate.

My doctor tried me on midodrine but it didn't really do much. It just made my vision not black out during pre-syncope episodes, but that wasn't worth the cold sweats it gave me. I was on 15mg of adderall twice a day for ADHD-Combined type and since we noticed it helped some of my symptoms he increased it to 15mg 3x a day with a sleeping pill so that I could take it in the late afternoon instead of experiencing an early crash at 7pm. Adderall helps me quite a bit because it helps some of the symptoms, but i'm still disabled by this. I haven't really had any tests done. My doctor has all sorts of tests he wants to run on me but we've been waiting until I get on insurance. I'm currently paying out of pocket for everything. We plan on getting on insurance this month. I also live around Nashville, TN so if the tests my doctor runs don't work out I can go to Vanderbilt. My stress hormones were not tested, although I think that is a really good idea. Especially since I've had problems with estrogen dominance and my hormones being screwed up (I have endometriosis and pmdd.) I'm always feeling stressed so it's probably a good idea. I'm kind of weary as far as doing things to raise or lower my blood pressure since when I experience the swings they are so drastic as it is that I don't want to do anything that will make it worse. Medicines don't make much of a difference anyways as far as I can tell. Adderall and Midodrine didn't really effect my blood pressure. Although I guess I wouldn't know because my blood pressure doesn't really have a normal. I don't carry a blood pressure machine on me when I'm forced to stand for a while, and I wouldn't put myself through that torture on it's own so I don't know what my blood pressure is after standing a while. Although like I said I did notice my pulse pressure tends to get low whenever I faint. I just noticed the pulse pressure thing the other day and it wasn't something I was paying attention to, although I think I need to start recording that too to notice any more connections. As far as the blood pressure machine thing goes, normally I don't take my blood pressure that often, I was just doing that for testing purposes because I was really curious. My blood vessels are still broken though in lines up both of my arms from that day though. Since my pulse pressure gets low when the machine is tightening to find your pulse the machine will read up to the high 280's sometimes trying to find my pulse and then just wind up reading error. Typically this only happens when I'm feeling faint though and I typically expect this to happen. I drink a lot of water on my own because I'm always soo thirsty and my mouth always feels so dry. I've been like this since the beginning of highschool and everyone always use to pick on me because I would carry this huge jug around and people use to think I was doing it to lose weight or something but I'm really just always thirsty. I just started drinking gatorade and I do notice it helps a little bit. I'm trying to start swimming at the YMCA and so I drink gatorade afterwards to help me recover. When I get in the water I feel like 85% better, but then the second I get out it's like gravity slaps me in the face and I feel so sick. I'm glad my numbers don't show a failure because I was actually worried about that. That is something I didn't think about though, it's a good think my heart rate tries to compensate for my blood pressure

Thank you for your response.I looked up Carcinoid Cancer but I don't have any of the symptoms. I never get diarrhea, although I only go to the bathroom about once a week even if I eat a lot of fiber, and I'm always bloated and I do get abdominal cramps. I don't experience flushing either. The only time my face turns red was mainly over the summer when I didn't know hot environments would set me off and I didn't sweat so I just got really overheated. Don't wheeze either. Hmm borderline pots? I feel like I have every symptom of pots and it's very disabling because I feel so incredibly fatigued all of the time and so dizzy and weak when I stand that I'm just unable to do anything. My heart rate races often when I do things and I get chest pains. I get migraines all of the time and my ears will ring and I get ear aches. I have problems with sensory overload. I pass out a lot if I don't sit down when I start getting pre-syncope. I have a lot of pain in my back and neck and I'm wondering if I have some sort of nerve damage because of all of the pain I feel. I've noticed I got sick around the time I started getting pain there and now when I get pain there I get more sick. At the same time I wonder if it's not pots because of my blood pressure fluctuations. I've never heard of a persons blood pressure doing what mine does even among other dysautonomics and so I felt I needed to ask. It's definitely some sort of autonomic dysfunction but what type is the question.

Hi, I'm new. I'm really hoping someone can help me. I got diagnosed with Dysautonomia at the very beginning of October. I've had a few of the symptoms during my teenage years, but they are such vague symptoms (dizzyness, chronic migraines, excessive thirst, ect.) that I'm not even positive if that was the dysautonomia. Around March 2013 I started to get a few weirder symptoms, like a few times I worked out or went in the sun and would turn bright red and be unable to sweat, and would just feel so horrible. I also noticed that I started feeling extremely dizzy in the middle of the night and if something startled me and woke me up my heart would beat extremely fast and I would pass out when I stood up. I was still able to function though, until around June 2013 when I got extremely sick. I have been disabled from dysautonomia since the beginning of June. I'm not going to go into a list of all of my symptoms being there is just so many and my brain feels foggy today. I had gone to the hospital twice over the summer and both times they found nothing after doing an EKG and blood test. They tried to convince me I had anxiety but I knew better. I was so sick and I knew something was wrong with me. At first I thought it was really bad anemia because a lot of the symptoms of dysautonomia can overlap with it, but when they ran my blood test my hemoglobin level was 24.5. As in I wasn't even close to anemic. I was completely confused because at the time I felt like everything pointed to it. They also checked my thyroid and low and behold my thyroid was completely fine too. The only physical evidence I had of there being a problem was my unstable blood pressure. The first time I was in the hospital it was extremely low, while the second time it was extremely high. It was so confusing. Was I trying to research a problem causing me low blood pressure or high blood pressure? That wound up being the thing that brought me to dysautonomia though. My biological mother is an EMT and when I told her everything that was going on my crazy blood pressure changes led her to believe it was dysautonomia. I looked it up and felt it fit perfectly. It expained the crazy things that I didn't even think were related. It felt great to be told I wasn't crazy. I went to 2 doctors after that, both confirming the dysautonomia theory. They never ran any tests, but they knew I had it from my blood pressure readings and from my family and medical history (I had shingles at both 12 and 16, my biological mother has MS, I have scoliosis which apparently they were interested in, and yeah a bunch of other medical stuff.) Sorry for the long history. I tried to keep it as short as possible, but since this was my first post I wanted to explain a little bit of backstory first. I feel like I fit the symptoms of POTS so well. Being unable to shower, being unable to stand for a while, all of it. The thing that confuses me so much about trying to find an individual diagnosis among dysautonomia is that my blood pressure and heart rate is completely ridiculous. It's not like my blood pressure gets high when I stand, or it gets low when I stand. My body literally just does whatever it wants. My readings are so crazy that I have other people take their blood pressure and they get completely normal readings back, I've tried several different machines, and I'm taking my blood pressure accurately. I'm the problem. I just ran out of my medication although my medication wouldn't cause it anyways. Here's an example of me taking my blood pressure a few times today. 2:41pm: 108/81 heartrate 112 (sitting) 2:43pm 145/127 heartrate 41 (still sitting) 2:45pm: 110/95 heartrate 96 (still sitting) 2:46ppm 124/87 heartrate 118 (still sitting) Yes, those are real numbers only minutes apart without me moving. It's not my machine, or me moving, or anything. I feel the effects when it goes to extremes too. I tried to do the tilt table test on myself the other morning Laying 15mins: 106/75 heartrate 104 Standing 1 min: 100/76 heartrate 138 Standing 2min: 113/80 heartrate 122 Standing 3 min: 100/62 heartrate 104 Standing 4 min: 97/69 heartrate 90 Standing 5 min: 94/75 heartrate 127 That didn't really tell me anything interesting. My blood pressure didn't get lower and lower or higher and higher, and my heart rate just kept jumping around for no reason and so it didn't even stay above 120bmp for a POTS diagnosis. I took my blood pressure at different positions the other day Laying: 71/52 heartrate 79 Standing: 101/80 heartrate 120 After walking down stairs: 97/67 heartrate 88 Those were all right after the other btw. It makes no sense to me why my heart would go down after walking down a flight of stairs but my body does a lot of things that make no sense. Later that same day Standing: 112/97 heart rate 158 (I was experiencing pre-syncope and felt like passing out so I kept taking my blood pressure and after I finally stopped showing Error this is what I got. Btw it shows error for me a few times a day because my pulse pressure will get really low. I know this because it only shows error when I feel faint and when it finally does give me a reading my pulse pressure is low. Going upstairs: 151/96 heartrate 91 Sitting: 123/100 heartrate 80 I've noticed that most of the times I experience pre-syncope my pulse pressure is low, and I think that is the reason I pass out. I took my blood pressure again during pre-syncope the following day. I was sitting on a stool when my vision went black and I felt dizzy and so I sat on the floor. It took about 5 minutes for me to get a reading but when I did it was 110/94 heartrate 140. My legs and feet were this blotchy red and my knees had this bruised appearance to them. Later that night I was experiencing pre-syncope again, strangely at the same time my ears were ringing and I felt like my head was going to explode. When I got a reading it was 136/121 heartrate 149. I've been keeping track of my blood pressure and heart rate for a few months now and it has gone from extreme highs 190/150 type stuff to extreme lows of like 80/50. My heart rate has gone from the 40's to being in the 170's. The crazy thing about all of this is that it normally happens at completely inappropriate times for no apparent reason. Like the extremely high blood pressure will be while I've been laying down, or my blood pressure will drop after going down the stairs. Other times though something like going up the stairs will make my blood pressure go really high. It's so hard to try to figure out what is going on when I get different results all the time. I just have no idea what is going on. If someone can give me some ideas I would be eternally grateful. I've heard of baroreflex failure but I really just don't know.