Allene

It started a little over a year ago, along with my other symptoms. If I sat still too long, my toes would go numb. It's steadily gotten worse. Now I wake up 8-10 times a night because one or both of my arms have gone numb. My entire leg will go numb just sitting for five minutes. I have a hard time in class because I'm required to sit in a desk for 50 minutes. For now, just moving my arms from the desk to my lap and crossing my legs relieves the numbness, but I'm worried that it will continue to get worse. Does this happen to anyone? What can be done about it?

I used to have terrible chest pain attacks. I always worried I was having a heart attack, since I have heart troubles, but after seeing my cardiologist about it I was informed that I wasn't having heart attacks and my heart is the same as always. It just so happens that the same visit concluded with my diagnosis of dysautonomia. What I always did, before the pains stopped happening, is I'd go draw myself a hot bath. As soon as I hit the water, the pain would go away. I don't know why it helped, but I suppose it couldn't hurt for you to try.

Well, lessee. When my symptoms were at their worst (I was confined to a wheelchair, constantly pale as a ghost, and generally feeling even more ill than I did when I was recovering from open heart surgery) my BMI was 28. I don't even want to know what my BMI is now that I've gained so much weight, but incidentally my symptoms are almost completely gone. The more I gained, the better I felt.

Pickles. I love pickles (:

I was curious about how weight could effect the symptoms of everything that falls under the dysautonomia umbrella, but particularly POTS (which I think is the subset I have). I've noticed that if I lose weight, my symptoms get worse, and if I gain weight they get better. I can't tell if that's just coincidence or what. I've always been somewhat heavy, though I don't look as heavy as I am. I've been told by more than one health professional that my muscle content is roughly 40% higher than that of an average woman my height, leading me to weigh considerably more without necessarily being fat. At 13 I weighed about 170lb. I was in really good shape, and my size was comparable to my much lighter classmates. It was at 13 when I started first experiencing fainting and fatigue and such. I was really active until I hit high school, and then schoolwork got in the way of exercise and I started gaining weight. I slowly but steadily gained until I was about 210lb, and I didn't seem to have any problems with dysautonomia, save for a brief period when I was 18 when I managed to lose some. I stepped on the scale at 210, and was horrified. I modified my diet and started getting a little more active. In the winter of 2010-2011 I lost about 40 lb, and in January of last year I was at 170lb again. Unfortunately, through the weightloss process, my faintness and fatigue and everything slowly crept up on me until the point where I was using a wheelchair to go places outside of the house. For whatever reason, I was unable to maintain my weight, and over the past year I've gained 60lb. I have seen incredible improvements with my dysautonomia. I'm rather upset with my weight at the moment, but now that I've seen how my weight seems tied in with my symptoms, I can't seem to motivate myself to try to lose any again. Has anyone else experienced anything like this?

Eurgh. I used to get this (or something like it) every night. For me it's like waking up from a nightmare, and your emotions are still strung up from that monster chasing you or whatever. Except it would happen with benign dreams, or even no dream. My doctor suggested that it was my ANS causing my fight or flight instinct to go off. I'm not entirely sure why it stopped, but I haven't had an episode in a few months.

I'd have to say that dysautonomia is the second most difficult thing I have to deal with. First would be depression. Even when I was a normal, healthy person with a great family and friends, no worries at all, I felt like life wasn't worth living. I know I have it great still, and I still struggle to see the value in my own life. The most difficult thing in the world is knowing you have everything you could possibly want, and being unable to feel happy about it.

I often have night sweats. About a year ago it was so bad that every night I'd have to change clothes around 3am, and sometimes change the sheets. Now it isn't so bad, and I just roll over and find a dry spot! For several months last year, I'd wake up every night anywhere from 1am to 4am in a panic. I'd wake up in the middle of a random dream, sure that there was someone in my room trying to get me. (One of) my (many) doctor(s) thinks it's because of the dysautonomia, and that is where my anxiety stems from as well. Lately I've been sleeping pretty well. about 9 hours a night, without waking up for a potty trip or anything! I feel more rested during the day now, but I still tend to get sleepy anywhere from 3-6 pm. For a while it was pretty intense and I'd end up sleeping 12 or more hours a night. I'm able to stave off going to bed until a normal time now, and I hope I can keep it that way.

The way I understand it is this: The vagus nerve is a nerve that runs throughout the body. It's got its finger in everybody's pie. It goes into the lungs, the heart, the esophagus, the stomach, digestive system in general, the legs, and whatnot. It means "The Wanderer" in Latin, and words like "vagabond" share the root-word. It's part of the autonomic nervous system. It helps control blood pressure by constricting the blood vessels in your legs when you go to stand from a sitting or lying position. It aids in swallowing and other digestive functions. It has some control over the heart. Since the autonomic nervous system is out of whack, the vagus nerve is, from what I've seen, involved 100% of the time. So, considering all of this, it basically explains almost all of our problems. But specifically, it can cause problems anywhere along the digestive tract. Some people have difficulty swallowing. Some people have acid reflux or GERD. Some people have IBS or other bowel problems. Often, we are struck with more than one of these ailments. I have bizarre swallowing issues, acid reflux, and IBS all rolled together. I'm not entirely sure the hows, I just know the whys. So I can't really tell you how the vagus nerve does this, just that it does.

I thought I posted in this thread, but I guess I started to and then never did. Hmm... My symptoms don't vary much day to day as much as they do month to month. My symptoms come and go, and while I've never felt totally recovered during the times when I've felt symptomless, there are definite periods of feeling better and definite periods of feeling worse. Usually feeling okay lasts a month or so, and feeling bad will last 3-5 months. That's just a rough estimate. Since the onset of my symptoms, the bad times have gotten worse at their peak. When I am in the throes of a bad spell, I am unable to work or go to school, shopping is difficult, daily chores are almost impossible, etc. I mostly stay home in bed and restrict my movement as much as possible. If I do get out and do something, it's the One Thing I do that day. I might go for a 30 minute shopping trip, and then come home and crash for the rest of the day.

So, I woke up yesterday and my legs were in a lot of pain. I got up and nearly fell down because the muscles in my legs refused to function right. My sense of balance is shot. I can't walk straight. I literally look like I'm drunk when I walk now. I've had this before, in January. It lasted a couple weeks then progressed until I needed a wheelchair because I literally could not walk more than a few steps without falling down. I'm really worried and depressed that this has struck so fast, when in the past things tend to go slow. I was feeling better than ever until the day before yesterday when my symptoms started flaring up again. I'd been going for walks every day, I'd even gotten a job. I'd been feeling great. Normal, even. Then suddenly, I started shaking, started drooling (it's gross), I could feel my blood pressure drop, and now this. I went for a walk yesterday and felt like I couldn't breathe. I have an appointment with a new doctor on Friday. I'm really hoping that something can be done.

I seem to sleep all the time. 12 hours straight at night, and I'll often take 2-3 hour naps during the day. I also have fatigue, but that is different from the somnolence. The fatigue is more like the feeling you get when you're getting over being sick. Not necessarily sleepy, but just dragging and tired. Does anyone else feel the need to sleep excessively?

Lexapro made my symptoms unbearable. I had been on it for three years for depression when I developed dysautonomia, and it made my symptoms so bad that three months later I had to quit. My doctor put me back on it a year later- again for depression- and it made me tremble, made me nauseous, gave me muscle cramps/twitches, made my fainting problems go from under control to pre-syncope or actual fainting at least 10 times a day, among other problems. I've heard that it can make things worse before making things better, but I was on it for 3 months and things only were continuing downhill. Maybe I'm a special snowflake, but at least Lexapro didn't work for me at all. Not everyone reacts to medications the same way. For the record, and to stay on topic, I'm now taking Zoloft -yet again, for depression (and anxiety)- and I haven't noticed a difference in my dysautonomia symptoms.

I see another topic similar to this one, but it isn't really answering my questions and I don't want to hijack the thread. Since my symptom onset in 2008, I have gone through periods where my symptoms gradually become worse over a period of 2-3 months, plateau for a month or so, then resolve and I go back to "normal" (whatever normal is) for a few months. An entire cycle lasts about 6 months all said. Generally each "relapse" is worse than the last, and each "remission" doesn't leave me feeling as good as the last "remission" A friend of mine is worried that I in fact have (relapsing-remitting) multiple sclerosis that has been misdiagnosed as autonomic dysfunction. Having looked into it, quite a bit matches up but I feel that dysautonomia fits better with the exception of this bizarre cyclical thing I've got going on. Is this "relapsing" and "remitting" thing normal for those with dysautonomia, or should I be heading to the doctor to talk about MS?

Well, I have a cough that's related to acid reflux. I know we tend to have gastric problems. Ever considered that as a possible cause? I don't know, but that could be part of it. The only symptom I experience is the cough, and for a long time I didn't know I had acid reflux.

I know that dysautonomia can develop after a viral infection, but what about an increase in symptoms after one? I've had dysautonomia for several years, and I caught H1N1 a couple years ago. After I had the virus, I noticed my symptoms more. Could this be coincidence (since my symptoms seem to be progressing anyway), or could having a viral infection actually have made things worse for me?

I developed dysautonomia before I began working. I haven't been diagnosed with POTS though, so I dunno if that makes a difference to you.

I am 21 years old. I've had NCS since I was 13 but my dysautonomia symptoms didn't really start getting noticeable until I was 18. Since then it has gradually gotten worse, with periods of near-normalcy. I was diagnosed at 21 (in January of this year). I have other problems that I do believe are related to my dysautonomia. I was born with an atrial and ventricular septal defect. I also have congenital mitral and tricuspid valve prolapse. The cartilage in my body is bad and wears too easily. I've had problems with my tendons being too lose in some places and too tight in others. I know connective tissue problems can be related to dysautonomia, so I think it's too coincidental for my tastes that I have connective tissue problems and dysautonomia. I often worry that my gradual worsening will cause me to die at a young age :/

I used to exercise (karate, and walking) until my symptoms became so bad that I would have pre-syncope in the middle of an activity. Pre-syncope for me drains all my energy, and for about 30 minutes or so afterward I'm much more prone to get it again or actually faint. I'm going to try to get back into physical activity again this fall since my symptoms seem to be helped by this new medication (I'm planning on taking a martial arts class at my college), but with a note from my doctor explaining that I may have limitations and to allow me to sit out or rest as much as I want to. The last time I tried to use a treadmill, I fell off it because I got dizzy and lightheaded. I can walk without that happening to such a bad degree, so I'm going to try taking walks in the afternoon/evening with my grandmother (she enjoys walking the dog twice a day, so I'll just join her :3) I used to have issues walking on treadmills because I easily get vertigo, so I imagine it was just a worsening of that. I also have a really hard time on the stairs. I have to rest halfway up most of the time :c Fortunately for me, I'm moving to my dad's house and it only has one floor. I'm hoping that this new medication will allow me to exercise semi-normally. I need the activity to keep my heart strong, and to lose weight :B

Alright, well, I was put on Focalin last week for ADD. I've noticed a tremendous difference in my dysautonomia symptoms since then. It works on a daily basis, and wears off 10-12 hours after it's taken, and I can feel when it wears off because I start getting dizzy and lightheaded again. It has even helped with my fatigue a bit. I was on it before, and now that I think back on it when they took me off it is when my dysautonomia started acting up again. I did some research, and Focalin acts as a mild stimulant to the CNS. I know the ANS is part of the peripheral nervous system, which is not part of the CNS. I wondered, however, if stimulating the CNS has anything to do with this. My dad mentioned that it works as a vaso-constrictor (he knows about this kind of stuff), and I don't know if that's part of the CNS stimulation or what. But keeping my vessels constricted is good for me since they don't do it an their own and I get pooling which of course makes me tired and dizzy etc. Thoughts?

For me it's been about 3 years since the onset of my symptoms. I'm not as disabled as some, but I have difficulties getting around and am looking into wheelchairs for trips out of the house. I can drive most of the time, and I am generally functional (if only barely), but quit my job in February because of my illness. I worry about continuing to get worse.

My grandmother keeps urging me to try "breathing with your stomach." I haven't tried it for breathlessness, but maybe it could work. Taking deep breaths. Also, something I learned in karate that could be helpful is to take a deep breath and hold it for two seconds, then let it out slowly. I know it works when you've exerted yourself, but for general breathlessness I don't know. I get this problem a lot and I never think to do anything except breathe faster. That only makes me lightheaded, so I should probably start taking my own advice!

I have migraines, so I can't take regular birth control pills. I have PMDD, so I have to be on some type of birth control. My doctor said the Depo shot would be best for me (I love it! No periods!). I haven't noticed any difference in my symptoms, except the gradual worsening which has been going on since before I started it. I used to take birth control pills (ortho tricyclin lo) before I started getting migraines, but at that time I hadn't really developed many symptoms so I didn't notice any big improvement since there wasn't much to improve. It did not make my symptoms worse.

I used to take SSRIs for depression and they made my dysautonomia symptoms ten times worse. I've heard they can be like that for the first 6 weeks or so, but I was on them for several months and still was having major side-effects. It didn't make me more sensitive to my other meds though. I'm sensitive to dairy, but that just makes my tummy hurt, it doesn't make my main symptoms worse. That's about all I've got :c

I've found that I get short of breath in normal, everyday conversation. If I keep talking, it can get to the point where I struggle to speak. This I've been told is due to my autonomic dysfunction. I also have found that I randomly swallow in the middle of a word or sentence, or at least my body tries to but I'm talking at the same time so I end up making an odd "click" noise. My tongue trips over my words on a regular basis. I figure both of these things are related to my vagus nerve, which I've been told doesn't function correctly. I haven't been able to do anything about any of it, though :/