AshleyPooh

My doctor tried to say that i was having anxiety, before I explained my blood pressure problems to her. I refused to believe it was just anxiety, because I didn't have a whole lot to be anxious about, and didn't feel anxious until something startled me or i had adrenaline rushes. After we found out I had dysautonomia, I knew that my nervous system was like a megaphone: everything gets amplified. Startled? Most people shrug it off. my body starts banging the war drums and wondering where the home intruder is!

Have you given any thought to hormonal imbalance? Not just estrogen, but adrenal hormones, and /or possibly thyroid?

26 now, 25 when symptoms started

Nitro is given during a tilt table test to elicit the symptoms you might otherwise experience during either prolonged standing ( as in the case for NCS) or exertion and stress ( for Potsies and hyper potsies). If they can't get you to respond with just the tilt alone, which apparently lots of people don't, they use the nitro to simulate stress. I went down within a few minutes without the nitro, but that's b/c my cardiologist says I was so 'brittle' ( meaning sensitive? untreated? bad off?) with pots or hyper pots, sounds like your cousin is probably one of those yeah. Like with other things, some people have strong symptoms at lower bp and hr ranges than others. For instance, my thyroid levels were at 17.9 when i was diagnosed with thyroid disease. I was almost bedridden and terribly miserable. Others have felt exactly like I did at a thyroid range of only 9. So it is just a matter of sensitivity.

Honestly I never feel good doing cardiac exercise. I was chasing my dogs ( who ran over next door to harass the neighbor's dachshund), and after I stopped running i felt a wave of dizziness and knew I needed to sit down. Today is one of those ' weak' days for my NCS, i could feel that before i even started running. If you are determined to jog as exercise, i would say to make sure that you only stop when you are in an area where you can lie down momentarily to cool off. Take the cool down slow, then lay down for a few minutes, flexing your leg muscles as you do. then slowly work your way to getting back up after your HR and stuff has stablized. Otherwise, I have found that swimming is a great exercise for dysautonomia, as you are practically horizontal most of the time anyway, and the water cools you down and keeps things stable. Also, while jogging i would consider bringing salt tablets with you to munch on while moving, so that when you stop it won't be quite so harsh

Thanks for letting us know about this!

katybug, we are thinking that it is something like hypersomnia yeah.She started having phases of basically not being able to sleep. she'd go outside and garden or whatever even though she needed sleep. Then she'd go into a 'loopy' phase where she'd get so sleepy that she'd practically be sleeping while on her feet, hallucinating conversations, being stubborn about laying down even though she clearly would fall asleep immediately if she did. Sometimes she'd randomly go make food even though she couldn't stay awake enough to eat it. We found out that her medications were making her worse ( anxiety meds) so she stopped taking them. Without any depressant meds, she does a lot better. She still needs to nap in the daytime though, and if she doesn't she runs the risk of loopiness. She was once in the hospital for 3 days because they couldn't keep her awake. All her vitals were normal, brain scans fine. Finally she got better, woke up, and we could take her home. She'd lost 20 lbs b/c she hadn't eaten the whole time. We were terrified until they told us they thought it was a sleep disorder. Now we are going to get that investigated. okiedokie: I have TMJ as well. I hope to get a sleep study too to rule out sleep apnea, but from what i can tell, my problem seems to stem from anxiety triggering some sort of weird breathing reaction when trying to sleep.

I was told by a health food lady that Tart cherry juice can help sometimes during bed. not sure how that works but that's what she said

Yeah I'm not sure if the apnea (if that's what it is) is caused by the NCS or anxiety, aka adrenaline rushes, or what. 30 percent is a lot of people to get sleep apnea. my dad had it, but he had heart disease and that is common. my mom has some unknown sleep disorder, basically a 'hyper sleep' where she goes into shut down mode and has to sleep for days at a time. Anything depressant that she takes, such as anxiety meds, antihistamines, stuff like that would drop her into an episode. she avoids all that now, and is supposed to go in for a sleep study. And yeah, as to the menstrual stuff, that's exactly what's up with me, Katybug. Basically my body hates estrogen, which is uncool since i'm only 26 and a girl kinda needs estrogen for stuff at my age. Depo has been a blessing in terms of keeping me pain/faint free

I like to think of my adrenaline rush as if someone had just dropped a set of metallic pots and pans onto the floor right behind me, and even I can't hear them but my body reacts as if i had. It's a startling over nothing, a surge of nervousness and alertness. After my heart rate goes back down i feel tired but so strung out and jittery that if it happens at night when i'm trying to sleep, you can kiss the night goodbye because one good surge will ruin my entire sleep cycle. The only way I have found to prevent those surges is anxiety medication, but I'm not on any now b/c i didn't want to 'depress' my system any more than it already is with the blood pressure. Oh yeah, after these adrenaline rushes, if my body is tired enough to fall asleep, the leftover anxiety I don't feel in my system actually cuts off my breathing every time I'm about to fall asleep. That's always a fun (not) experience.

hmm the one time I tried Tramadol, it was the extended release version called Ryzolt. I never wanted to try it again after that, as it made me feel completely bug eyed and out of it, as well as a slight back rash. The only time I've tried Toradol was a shot in the hip, and I blacked out from it. Thinking now that it was the NCS being triggered by the pain of the shot rather than the medication itself though. I will try it again one day when needed, but warn them not to go near my hip Migraines are.. ugh. I watched my mom deal with them her entire life. I had never had one myself, up until the dyautonomia. I had a phase where I thought my vision was messing up. I went to the eye doctor complaining of disorientation, light sensitivity etc. My eyes checked out fine, and then I got the NCS diagnosis and some aura stuff started showing up, and we realized it was a silent migraine probably caused by bloodflow issues from NCS. Go figure. The morning of my ttt, I had the worst headache. I just woke up and it was terrible, so I had to take tylenol just to make it through the test. Thankfully the headache had eased off by the time the test began. also Khaarina, I'm sure you already know this, but do make sure to check your blood pressure. If you are hypertensive, it could cause headaches. A friend of mine had a hypertensive episode, and her head was just killing her for the longest time until the bp went down again. I hope Comic con was great! Want to go myself one day

Wow sarah I didn't realize hyper pots could be so horrible! A resting heart rate of 130s? That sounds insanely exhausting.I complain a lot because of the low blood pressure and high heart rate, but compared to you, my heart rate looks pretty good! The midodrine at least might help keep your heart rate lower than it was before. I have noticed it keeping mine fairly in control, except for occasional episodes. Have you tried other bp medications besides chlonidine? I know my mom is on metoporol? it seems to work decently well for her. I know not all bp meds work the same. When they tried to switch her to a different kind called Verapamil, her bp skyrocketed and she had to switch back to the other stuff. She's actually on two bp medications i think: metoporol ( which regulates heart rate more than anything) and Lisinopril. Sometimes it takes two I hope you get some relief soon though, you're exhausting me just by thinking about it!

Sarah, thanks for replying. I am considering a sleep study. I have had trouble sleeping a lot like you have for years, constantly waking up, and adrenaline surges when trying to fall asleep. I have a feeling that yesterday's nap problem was because someone put the a/c to like 75 degrees, and the house heated up (it's not very shady and it's like 90s F here). I think this, along with maybe a heart rate decrease? could have triggered whatever happened. I did not get any real rest today either, felt bad waking up again. I think it's definitely something that if it doesn't resolve, I will need to see a doc about a sleep study. I had no idea florinef could mess up your cycles! I am not on it but it's good to know for future reference. I actually got a little faint the other day after ramming my toe into a chair. i got really hot, a bit queasy and stuff. I think pain is definitely a trigger to watch out for now

Hi all, I have two symptoms that I want to ask you all about. I have NCS by the way, at least only that as far as I know. First off, has anyone experienced this?: Today I was very sleepy so I went to take a nap ( which usually never works out as I get adrenaline rushes from the tiniest noises). Today I was able to fall asleep, and slept about an hour. When my alarm woke me up, I felt AWFUL. It was strange, but it felt like I had just not been breathing hardly at all for a long period of time. My head was really heavy feeling, my chest felt weird and heavy, and I felt basically suffocated. It took 15 minutes of laying in bed just breathing to recover enough to get up. I've felt something similar to this before, mainly from having my head in the covers or something like that. Does that sound like an oxygen deprivation issue? I can't imagine why it happened. I wonder if like I've heard reported, I was waking up into a fainting episode or something? Okay, here's another random symptom I wanted to ask about: Does anyone have trouble with their menstrual cycles? I ask because, for years, I have had what nurses assumed was Endometriosis ( no surgery to verify this). On my first day of my period, I would get cramps that would worsen to the point where suddenly the blood would drain from my face and I'd go completely white, followed by vomiting and disorientation, until I would up on the floor. This would go on for hours until it subsided on its own, or with the help of heating pads and pain medication, usually chased by nausea medication. These episodes were so bad I became terrified of having one in public, as I would be completely unable to help myself. I got on depo provera, and it has stopped my cycles completely, so I don't have these episodes anymore. Do you think that the near fainting episodes I have with those are my NCS being triggered by the pain of the cramps? If so, I've had NCS since I was a teen but didn't know it b/c I only reacted during that situation. Anyway, just curious

Oh and thanks Alex for the articles. It sounds to me like you can have something like POTS or NCS, but not just have those very specific symptoms but overall dysautonomia symptoms as well?

Honestly, the treatments for both NCS and POTS seem nearly identical. As to the causes, my doctor doesn't seem interested in researching any ' causes' of NCS, and when I asked just told me it was a benign condition. I do wonder sometimes if I have both. when I'm sitting down and my heart rate sometimes jumps to 120+, it does make me wonder why, as I was doing nothing to really stress myself. It never goes higher though than the 120s, and doesn't often do that. My main annoyance is that every article seems to describe NCS as 'episodic' when really it feels much more chronic. Maybe you can have a form of NCS that affects you literally every time you are upright, and not episodically at all. All I know is, that any time I'm upright or on my feet, I feel symptomatic ( medications do help a lot though). Also, has anyone ever heard of a strong increase in blood pressure when exercising with NCS? I ask b/c once i was doing some minor muscle work with resistance bands, and got shaky so I quit and checked my bp and it was somewhere around 179/89 or something. It went down gradually, but I'll never forget that and have no idea why that happened as I normally have low blood pressure, not high. Part of me also worries about pure autonomic failure. I have had some issues form ever since my blood pressure started messing up. Namely, I get upset stomachs much more often than I used to. Sometimes they hit me out of the blue. It's like something is 'triggering' the need to use the bathroom. As I've been chronically constipated most of my life, I find that this bothers me greatly as it was such a sudden change in habit. Also, as for when my symptoms started appearing... the only thing I can really link it to is possibly the onset of autoimmune issues. I had MRSA 3 times in a year, then found out that was probably due to autoimmune thyroid disease dragging my immune system down. Who knows what that could have done to me?

Hey all I have a question. I was diagnosed with NCS, have been on medication and all. I was researching the differences between NCS and POTS, and feel a little confused. My doctor told me I have NCS, but according to most articles about it, you don't feel bad ' all the time' like you would with POTS. They say you'd have few symptoms in between episodes. That just doesn't sound like me at all. I have chronic issues all the time. Every time I am standing up or moving around I have issues! It feels less like 'episodes' and more like just my everyday normal ( without medication). Sometimes my pulse goes up without my bp dropping. Sometimes my bp drops without a pulse increase( in fact sometimes goes low). I can feel bad without a bp drop, which according to NCS wouldn't make any sense? I know some of you say you have both NCS and POTS, and I"m wondering how you were diagnosed that way? I don't feel like I have occasional fainting episodes: I feel like this is a constant thing to have to deal with. I'm way better on my medications, but was just wondering why I see stuff about NCS that conflicts with how I feel?

I have had my carbon dioxide levels checked a few times ( always blood drawing). Every time, my Co2 has either been too low out of range, or just within the range. I was told by my old crappy doctor that it didn't mean anything, but of course now i realize it's a symptom of whatever causes the NCS. I also have trouble breathing sometimes. Usually when I'm sitting I breathe really slowly. When standing of course I feel out of breath. Sometimes when I'm trying to sleep, if something startles me and I get an adrenaline rush, for hours afterward it will cause me to stop breathing every time I go to fall asleep. I guess it's a form of anxiety, or the effects of the anxiety even after the actual nervousness is gone. ramakentesh, what you are saying sounds a lot like what happens to me actually

I am taking 5mg 3 times a day. I only have noticed a couple of pounds of weight gain, but i fluctuate a lot and have been eating a bit worse lately. I can absolutely tell when my midodrine is wearing off. My pharmacy has botched up my refill and i can't get it until tomorrow, so I had to cut my dosage in half to have something in my system until i get it. I feel like total crap :/

Ah Loulou, thanks for the info. I will ask to get my cholesterol tested, as both my parents suffer from it as well.

If you have problems with your blood pressure being high, this makes sense as your bp is always highest laying down flat. Are you on a beta blocker by any chance? If not, and your blood pressure is high enough for it, I'd ask your doctor about it.

I have Hashimoto's hypothyroidism. That started about 4-5 years ago. Dysautonomia diagnosis this year. No one has ever bothered to check my cholesterol levels, maybe assuming b/c i'm not overweight they would be fine?

If you are worried about the echo results, I would get a second opinion. The heart isn't something to play around with, and sometimes doctors can flat out be wrong. I'd never have known about my NCS if I had listened to my original doctor, who said having 70s/40s blood pressure was okay in people who were small like I am, and athletic( except I'm not athletic at all and thought she was insane for even suggesting it) Second doctor thought it was anxiety, but agreed to get me a cardiologist b/c of the blood pressure ( even though she'd never seen it low at the office, b/c I get super nervous around docs) Finally it took a cardiologist and a tilt test to prove I wasn't crazy. Never accept a first opinion if you aren't comfortable with it. Also, I would point out that when I got my echo done, everything looked good, except for one thing: my heart walls, the sonographer said, were too thin. He said he could tell I had low blood pressure by seeing the heart walls. So I assume that if the medications keep my blood pressure up, the heart walls should improve, along with exercise. Not sure how much is influenced by our lack of exercise, or blood pressure problems, and what is actually a heart problem.

Oh my gosh you developed an allergy to it? That really... is not cool. I hate when that happens. I do the same with food sometimes. I ate watermelon all of my childhood, then slowly began to have issues like sneezing and itchy throat. Now I'm at the point where I can't even smell the darn thing without symptoms, it's ridiculous! Allergies to medications though are pretty bad, because sometimes you really need them! I hope the sublingual works for you!

honestly, your brain scan looks a lot like my mother's, and she has chiari, but I am not a doctor so I can't really say. Your brain and spinal cord area do look rather close together though, but I can't fully say. let your doc see it and see what he /she says.