AshleyPooh

you know what's weird? is that ever since this nonsense developed, i swear i see crap out of the corners of my eyes. like seeing stuff move then realizing that there is nothing there. it's freaky! I have seen some folks speculate that vision problems could be cluster headaches , so between that and the salt issue, I know what to talk to my doc about. I really want to try florinef. i'm going to ask her about it!

how interesting that so many of us seem to have problems that are so similar! I really think I will ask my cardiologist about this and see what she thinks, b/c like some of you said, driving is a serious issue with this problem. Can't see a car coming at you well when you are zoned out like crazy... I will definitely let you all know what my doc thinks

So I've been talking to few people with NCS, and one thing I've noticed some people complaining about are visual disturbances. I mentioned it on a ncs group and someone came back describing to me the exact symptoms I am experiencing! Basically , we are getting a 'funhouse mirror' type feeling of tunnel vision, disconnect from the world around us type stuff. It makes face to face conversations extremely uncomfortable, and my eyes are constantly feeling uncomfortable for no reason. At work, it sort of makes me feel like I'm floating around on my own, and it's hard to focus. Now I am on Midodrine to keep my bp up, and so far it's doing a good job, but whatever is going on visually is NOT being fixed by this medicine. I've seen an eye doctor not long ago, and they said my eyes were fine, and that if i have issues, it's something 'affecting' my eyes, not any damage or disease of the eye itself. I am beginning to suspect this is a salt issue. I have heard that aldosterone, a hormone that regulates electrolytes and stuff, is greatly affected by salt. I also know that aldosterone affects your eyes in a strong way, especially the little muscles in them. Basically I want to hear feedback from folks who feel like they experience this, or have had this problem in the past. Also, to anyone on Florinef: Did you experience eye issues before taking Florinef? Did the Florinef help your eye problems any? Also, I want to ask my cardiologist about this, but I'm afraid she won't know what I'm talking about :/

That is interesting Cala, b/c if i remember correctly, my hands don't do it in salt water either! It clearly must be a salt imbalance then, but why show up on the palms? so weird. Also, as much sea salt as I crunch on, you wouldn't think there would be any salt imabalance, but I guess I'm not as salty as I thought I was? lol

Wow you sound like you've had a nightmare of a time dealing with your problems! I imagine you are definitely stressed out right now. I definitely think you need to switch neurologists, it sounds like the one you have just is completely apathetic. I would go to the neuromuscular doctor for sure, but you sound like you have a lot of other things going on as well, including issues with hormones and other chemicals. You need a doctor who understands all of that, and won't miss the obvious. The only doctor anywhere near Washington that this site recommends is in Oregon OREGON Emilia Arden, DO Northwest Cardiologists 9155 SW Barnes Road, #431 Portland, OR 97225 503-292-4485 Treats POTS She trained with Dr. Grubb If she's trained to spot dysautonomia problems, then what you need to do is possibly make a trip out of it, go see her, but make sure all of your medical labs and tests have been sent and looked at ahead of time(including mayo test results), so you won't be delayed in getting really checked out. Explain your situation to them, how far away you are etc, and hopefully they will understand. Also, sounds to me like you need a new endocrinologist :/ I really hope you get the help you need, and please let us know if you do!

Hanice... http://i1301.photobucket.com/albums/ag117/ashley_pope1/IMG_20131015_001538_zps2e34b0ee.jpg http://i1301.photobucket.com/albums/ag117/ashley_pope1/IMG_20131015_001638_zps699dc979.jpg Okay so my phone's camera is really terrible, sorry about that. If you look closely, thanks to the blur you'll have to , you can see bumps or plaques forming on my hands. Only on the palm side, not the outside of the hand. Those pics are within about two minutes of hand immersion in warm water. This happens anywhere with warm water, not just my house, and not with any specific things in the water... just has to be water, preferably warm. Sorry it's not more dramatic, but sitting around with a hand in a bowl of water isn't that fun and i didn't want to wait for more dramatic results

Okay, so this is going to start off sounding off topic and random, but really, I think it may have something to do with my dysautonomia, I just ... am not sure how. So recently for the past... oh five or so years before my dysautonomia diagnosis, I have had something rather strange happen to my hands. When I am washing dishes, or taking a shower (basically keeping my hands in warm to hot water for any real length of time), my hands will form bumps all over them. They aren't red, they aren't itchy or painful... but it begins to look like I basically have pebbles underneath my skin, and touching my skin on my palms feel dry and gravelly. It will fade as my hands slowly dry out. Now I know , you might be going " But Ashley, hands wrinkle when they are wet". Yes, yes they do. But these aren't wrinkles!! They're bumps! I can't figure it out!! I tried googling my symptoms, and yes that sounds paranoid but keep in mind my regular doc is not a doc so much as a sliding scale clinic that's extremely overworked and my np is terrible. So basically the closest match I could find is something called Aquagenic wrinkling of the palms. Anyone ever heard of it? Supposedly, they are saying that this has something to do with permeability of the skin allowing water through? Also have seen that people with Cystic Fibrosis or Carriers of Cystic Fibrosis have this quite a bit. I am pretty sure I don't have CF, or I'd probably be dead by now, but is it possible I could be a carrier? Is this something anyone else with Dysautonomia has? Any ideas would be helpful , thanks

You know what's interesting about this. Reading up on Adrenal dysfunction , especially insufficiency, they pretty much say the same thing: you have to eat certain types of fat, b/c it keeps your cortisol reserves up. If you eat too low fat of a diet, it depletes your stress hormones, causing symptoms of insufficiency ( which are also very similar to dysautonomia).

I wonder if the midodrine actually causing more heart palpitations? I feel a lot better for the most part, now that I'm taking midodrine, but at the same time I have noticed a strong increase in heart palpitations...

I would make sure you have a heart problem before you get a pace maker. As for the low and fluctuating bp/pulse stuff, I sympathize. My pulse and bp can go from 75/40 with a pulse of 47, to 106/75 with a pulse of 80 within a minute or two. (or random pulse spikes up to 106 sitting, like today) Constant fluctations, and pulse drops and spikes quite a bit. The best thing I have found for this so far is Midodrine to raise the blood pressure. This makes it so that your body doesn't have to work so hard to be stable. it's kept my pulse more stable too, which is nice. I would consider asking your doc about it if your bp is just too low.

I have weird voice changes sometimes. The most notable is when I'm very tired, or have taken medication that makes me tired or has narcotics in it. Once I had a back strain really bad, and the medicine i took for it made my voice really soft and croaky :/ Also, I notice when I'm really tired, I get crazy fluid retention in the face. It's like one moment my face is skinny, the next it looks fat and watery! I suspect hormones at play there...

I'm actually getting tested for this same problem. My doc ordered a congenital adrenal hyperplasia steroid panel.. not b/c she thinks i have hyperplasia ( b/c that's a rather screwed up condition that causes excess hair growth and ..er.. goofy effects), but b/c it has cortisol and DHEA checks in it. (and b/c it tests lots of other hormones) If anything shows up there, she may do the ACTH stim test as well. I have suspected adrenal insufficiency for some time, and even ordered an independent lab test once ( saliva cortisol 4 samples for the day). That was back when I didn't have insurance or a doctor. The results came back that my morning cortisol was 3 ( should be somewhere around 13-25? After that i got a doctor and was going to get her to test me again, but she left the clinic and i got stuck with an idiot who wouldn't test me b/c it was too expensive. Finally , the local lab gave me a 100 percent discount, and i talked her into a hormone check. I just did the lab today, so i guess my results will be coming back sometime next week!

Was told I had IBS/constipation my whole life. Then when my dysautonomia started, I was getting random upset stomachs. Like literally had to drop what I was doing and go find a bathroom. Was always bloated, gassy, acid reflux etc before then though. Was checked for gluten intolerance, hpylori etc etc, nothing. Doe GI symptoms only affect POTS people? Or does it affect NCS people as well? b/c I certainly have had a change in GI habits since my NCS symptoms began for sure

I'm going to give you some advice that most people don't really know about. And to do so, I will give you a great example of the advice, as this just happened to me. My cousin and I both came down with a cold virus at the exact same time.She didn't realize she was sick until she'd driven all the way up from florida to illinois for her mini vacation. That day, we both talked, and realized we were both sick. Anyway, we both got bad enough that we had to go to the doctor. I went to an urgent care center, and her to a doctor up there. I was told that it was an acute virus, and that antibiotics weren't going to work for it, and I just had to treat the symptoms until it went away. My cousin, on the other hand, was given antibiotics for her virus. Bot of us continued to be sick at almost the exact same degree, regardless of medication. Then, we both developed bronchitis at the same time Well she went back for more antibiotics. I, knowing my doc had said antibiotics wouldn't do anything, did not go back. My bronchitis resolved at the exact same time that my cousin's Bronchitis resolved - and I did not take antibiotics. The things that helped me the most were Tylenol, cold medicine, and an albuterol inhaler for the Bronchitis. Antibiotics don't do anything for viruses, unless you develop a secondary bacterial infection due to your immune system being compromised and bacteria overgrowing. If you are really adverse physically to antibiotics, don't bother with them, as they probably won't help anyway. I recommend cold meds, an inhaler, and lots of water , salt , and rest. Now, if your bronchitis or coughing gets extremely bad to where you get too short of breath, or are worried it has become pneumonia, then I do recommend you go and find out if you need antibiotics. Also if you have a proven fever that doesn't go away after a few days. Btw, my tachy problems and palpitations were way worse when I was sick, so I sympathize. Best thing I found was laying horizontal as much as possible, and being careful about the type of cold meds I took, plus drinking loads of water. I hope this helped!

After years of medical problems that were brushed aside by my regular doctor, I switched clinics. The new doctor listened to me, and although she wondered if it was anxiety ( part of it was) she sent me to a cardiologist through a charity program to make sure it was nothing more serious ( my family has SERIOUS heart disease history). The Cardiologist, Dr. Cox, immediately spotted my symptoms for what they were, and told me so that very first appointment! She said she'd run appropriate heart tests to rule anything else out, but that she wanted a tilt table test to check for dysautonomia. So we did, and I'm ever so grateful she listened to me! I felt like I was going insane, especially after my old doctor refused to believe me about my problems, I was desperate and crying all the time when I got to her. No insurance + vague strange symptoms = no diagnosis, for so many people, but luckily someone out there listened and knew a little something, and I got the diagnosis I needed.

I understand the frustration. As someone with neurocardiogenic syncope, you would think i'd only have problems standing, but it's just not true. Sure, my worst problems are while standing, but I always had a lot of problems, even sitting. Low blood pressure, high heart rate, all that happened while sitting around. The standing just made it worse. Thankfully my medications are helping out a great deal, along with fluids and salt. So it's not quite so bad as it used to be!

yikes! What did the hospital say about what you were experiencing? Also I don't like the sound of the chest pain/ arm pain. I mean it could be from eating (gas can do that) but you need to make sure that's not something more serious. I have had shortness of breath after eating. mainly it is due to heart palpitations and blood pressure drops associated with my NCS. overeating, or just being too full, can cause dysautonomia issues to mess up, so I hear, and so I have experienced as well.

Not just with POTS, but NCS as well, this is a problem. Whenever I tell people I have Neuro-cardiogenic syncope, they look at me as if I've lost my mind, or as if I've spoken alien language. Then I have to explain what it means, then I have to explain that no, it's not some thing that only happens sometimes to me, but a constant problem that I have to watch out for, regulate with meds and fluids, and be careful when standing too long or in the heat etc etc. My cousin this summer wanted me to run around with her everywhere , and I have to keep reminding her that I can't go on hours long goof abouts with her in 90+ temperature and 70+ humidity, or I'd collapse. She doesn't understand at all.

Thanks everyone. I forgot about how the albuterol acts, i haven't needed to use it in years. It's possible that it's aggravating it. Also I really didn't think about the hyperventilating thing. I have been having trouble breathing, so it makes sense that it would affect my heart palpitations! And lol Looney, I know how your son feels. I go for hot tea, cough drops, throat spray, and the inhaler. i feel a little better today than before, so I'm hoping I'm over the worst of it!

Hi Katy I don't think so. I mainly have taken an albuterol inhaler, but only about every 12 hours. I'm not sure if that could make things worse. I have avoided cold medicines b/c of the stuff in it that is a stimulant, so I'm pretty bare bones on the meds right now. I wonder if it could also be from coughing. Constant coughing might upset my condition i suppose, and make heart palps, kind of like the way over eating or losing sleep does.

Hi all. I have been sick with a really nasty acute virus lately. Fevers, aching, sinus stuff etc. Well the virus turned into Bronchitis , and i've been dealing with that in misery. However, I'm noticing a serious increase in heart palpitations, and I can't figure out if it's just being sick? Or perhaps dehydration? Does anyone else get lots of heart palpitations when they get sick? my blood pressure actually seems to be doing okay ( i think it actually gets higher when i'm sick), but the heart palps are driving me crazy and making me not able to tell whether the shortness of breath is from the virus or the palps. Any ideas on how best to deal with acute illnesses with dysautonomia would be great!

I definitely think I look unhealthy, and when people around me are honest, they say I do too. My pale (but olive) skin usually looks a bit sickly, and the dark circles under my eyes are ridiculously bad. I always say I should be a cast member for that show, The Walking Dead..... as a zombie. I guess it has something to do with blood flow/ blood pressure, but sure wish it would go away. As for the glossy eyed look LOL i know exactly what you mean. I usually have a dazed and confused look on my face, like a spacing out type feeling. I know it probably makes me seem dumb and/or slow, but there's nothing I can do about it. Definitely starting to realize that 'fixing' my problem isn't as easy as eating salt and fluids and taking my meds. It might help ease the symptoms, but I don't often feel completely symptom free. Then again, I need more tests too. At the very least a vitamin workup , and hormone checks.

I have a cardiologist who diagnosed and treats my dysautonomia. It took only a couple of minutes describing my symptoms to her for her to immediately go " Oh that's dysautonomia, let's order a tilt table test".... done and done. She's the one who gives me the Midodrine for the NCS.

Although I don't think I suffer from anxiety disorder, and it is actually the tachy and adrenaline surges, I will say that because it took me so long to find help, and a diagnosis, that the more I went to doctors , the more tests I got that came back negative, the more anxious and depressed I became about my condition. I felt like people thought I was a hypochondriac, that I was just lazy, out of shape, or had a mental issue. One of my docs completely dismissed the idea of my blood pressure being 70s/40s as ' normal' for an 'athletic' person ( which i was definitely not, I'm just naturally small). I cried after that appointment, b/c instead of helping me she just told me I needed to ' believe in myself more'. I switched doctors. The next one thought it was anxiety, b/c of the breathing issues trying to sleep, and in a way it was anxiety from the adrenaline surges. But she agreed to send me to a cardiologist for further tests, and I am so grateful to her for that, because now I have my diagnosis and a lot of that depression and anxiety is gone. Now it's just tachy and adrenaline surges

I know I have terrible sleep, even when i do sleep all the way through the night. Multiple people have commented that I make strange sounds during my sleep, and I have often noticed that if I don't wake up periodically, I actually feel worse than if i'd slept all the way through! This leads me to believe it could possibly be oxygen related. The theory I have is that my body is not getting enough O2 during sleep, so it wakes me up to sort of ' refill' as it were. On nights I sleep all the way through, I usually feel like I was hit by a bus. A lose/lose situation. Definitely going to ask about a sleep study though