lloppyllama

I have terrible brain fog as well. It has been really bad this last month and has made school nearly impossible. This whole not being able to think issue stresses me out so much more than just feeling ill. Today I am home sick because I keep passing out But I also have major brain fog issues, right now I am looking into taking Cerefolin NAC, which is supposed to help with memory issues. My vision has been really poor lately too, the optometrist I saw said that it was because there just wasnt enough blood flow to my eyes. I dont really know what to do about that though, my doctor doesnt really have any ideas either other than just taking in more salt and fluids. I hope we are able to get your minds back soon! Love, -Mary

When had you taken your medications in comparison to your activities. Perhaps if you just took your beta blocker and then went for your walk that could be why your HR was low. That is just a thought that I had...maybe by the time when you were sitting down your BB had worn off more. Good luck! I'm glad you were able to get at least that small bit of walk in though -Mary

Compression stockings make a world of difference for me. I have really bad blood pooling in my limbs, so if that is an issue, I would definitely recommend it!!!

I will get one side of my face really hot and warm, and my right arm is just always a bit more purple hued. The flushing in my face is usually on the right side. I dont know why it does this. If you figure anything out could you let me know? Its really weird, but it happens to me too.

well I have migraines due to by autonomic stuff, so I feel like it is likely to be both...it is for me anyways. I get the same weird vision issues as you described. They tend to happen on days when I am feeling really sick, so I would definitely have dizziness and fainting going along with the eye issues. I had my eyes checked by an eye doctor, and he thinks that its just due to my POTS, and that my eyes arent getting enough blood flow and so they dont function properly....just like everything else in our bodies! I dont know what to tell you on how to fix it for your job, just keep up your liquids and salt intake! Thats what makes a difference for me. Best of luck! -Mary

It says she was "last seen" yesterday at 2:30 PM. So I am guessing she will see this and reply. I hope she is doing well too!

I think I might have the same thing, but am not sure. I eat a lot of those same crackers, and on Saturday I got really sick with stomach cramps and diarrhea, I am doing better now though. Is there even anything doctors can do for salmonella? hmm...I hope thats not what either of us have, but even if it is, we just have to be sure to take care of ourselves! I hope you are feeling better soon! -Mary

The arms thing I believe is because it raises your heart rate since you body has trouble pumping blood up there, so your blood pressure drops, and your heart starts to race.

I would say its because the incline is more gradual...but the stairs if you go to fast you leave your stomach/head on the last step, causing severe dizziness. Plus stairs are much choppier, hills are smooth. For me going up stairs is harder than up a hill, but down stairs is easier than down a hill. Such silliness!

Hello there, First off welcome, glad you found us, but sorry its all so confusing! Hopefully you will start to understand things more soon, and then your daughter can start feeling better Drinking the 2-4 liters a day while feeling ill is really tough, especially when you are overly nauseated. For me I really just have to force myself to, and teach my mind to not let me be nauseated, though it sounds imposible, it does work for me. Between biofeedback type techniques to just plain persuasion in my head, I am able to not throw up, and stomach the nasty 2-4 liters of gatorade that I drink a day. Its really hard, but for me the only way that I am able to function during the day is if I get my liquids and salt, so ultimately its just a matter of forcing myself to do things. I am also a POTS teen, so if your daughter needs or wants someone to talk to, feel free to message me, and you can have my e-mail or maybe she can set up an account if you and her wish too. I also know of a site for kids and teen with dysautonomia, if you are interested. In regards to pots switching on and off, I have never heard of that. It is usually more gradual of a healing process, and hopefully eventually she will grow out of it, but unfortunately, my guess is that she is just having a good day or two here, and will be back to her "normal" sick self soon. I hope I am wrong though! That would be wonderful you you and her I hope you both are doing well! Feel free to message me if you want to. -Mary

Why didn't they put you on an antibiotic like penicillin or amoxicillin? That is what I was just put on today for my sinus infection.

http://dinet.ipbhost.com/index.php?showtop...own+back+of+leg Check that out...I get that same symptom, as did many others.....

Hey, I live near Mayo in Roch, so that is where I go for all my non POTS stuff and my POTS treatment. I am in pediatrics, so mine is a different area than where you will be, but they all "preach" the same stuff. I don't want to make you worried about your appointment or make you think that it wont be successful, but I do want to "warn" you. I have talked to people who went there all excited about the possible new knowledge, and left disappointed because all they got was the same, high salt/fluids and exercise talk. The doctors at mayo are very bright and do know what they are talking about, but depending on where you are in your treatment, they really might not have anything more to tell you, unfortunately. I do think that its great that you are going though, because its important to make sure that the doctors have reviewed all their options for treatment. I hope that they know something that they think can help. Try not to lose high spirits no matter what the results of you appointment are!!! Best of luck! Love, -Mary

Well I know for me my migraines, are becuase of POTS. So when I have a migraine, I always know that it is b/c of POTS, now the symptoms during the migraine (i.e. falling down, black outs, blurry vision, vertigo...etc.) I dont know if they are from the actual migraine or POTS. I would guess the migraine, but since the migraine is from POTS, then that would indirectly make the symptoms of the migraine from POTS as well. Sorry if that is confusing, it made sense in my head, but that doesnt mean that it actually makes sense, haha. I hope that helps a little at least. Did you perhaps have migraines before you got POTS...if so did you have these symptoms you are experiencing now then as well, or are they a new thing?

Like Flop said, the treatment for both NCS and POTS is the same, so I wouldn't get to worried about which condition it is. Just focus on the treatment of your daughter. It is very possible that she has POTS along with NCS. Also...every case is different so your daughter's case of NCS is going to be different than any other documented case, because she is a different person, and will react to the illness in different ways. Good luck, I hope things start to become less scary and confusing for you soon! Love, Mary

Cool, let us know what you think of them if you try them! I like the no sugar part!

I am so glad to hear that you are home and things are going well for you! I hope they stay that way

I know that when my mother is too strict with things, I just dont tell her. Also if she is annoyingly worrisome, I also dont. Though this maybe isnt the best thing to do, and I know that and try not to, it is how the human mind, or child/teenager mind, works. Just something to remember. It is very important to protect your daughter and make sure she is safe, that is more important, but the above is just something to be aware of and keep in the back of your mind.

Thanks for letting us all know, Melissa you're in my prayers. I hope they are able to get things under control for you as soon as possible!

I dont know if I have much comfort for you as I have never been pregnant with pots, or pregnant at all for that matter, but I have seen before on here that most people pregnancies go wonderfully and they actually feel the best they have in a long time. I think its a good sign that you said you are feeling better than ever! And also if I remember correctly from when I watched that episode, she does have POTS she actually started the NDRF site...but the doctor only thought that her miscarriage might have been caused by the low blood volume...that doesn't mean it actually was. Miscarriages can happen for many reasons, this was just a guess. Also dysaut. patients dont actually have low blood volume, our volume is that same as any other person, it is just due to the fact that our blood vessels dont constrict properly that we need a higher blood volume...but our actual volume is not low compared to a normal person, we just need to have it higher because of our ANS dysregulation. Try not to worry! -Mary

I used to shiver and tremor ALL the time before I started treatment...now that my symptoms are more under control it occurs far less commonly, probably only once a day, when it used to be almost constant. Now I get the shivers commonly around meal times. I think that this is related to POTS in your case as well, as my doctor at Mayo believes it is. I hope it starts to go away for you in time with treatment, I know its annoying!!!

Happy Birthday! I hope you get to go home soon

Hello, I will try to help as much as I can, but I have POTS, another form of dysautonomia, not NCS, but I do know some about it. I would say that her dizziness, chest pains, "brain fog" as we like to call it, or concentration issues in plain terms, are all due to the NCS. The clumsiness I am not sure if you meant she was starting to faint, or near fainting, which we call pre-syncope. Even if she was fainting or near it, and it was just play clumsiness, that could be the NCS as well, I know for me POTS makes me terribly clumsy for various reasons, vision impairment, I just cant plain coordinate my limbs, and so on... I am 17 years old, so I am not as young as your daughter, but I am dealing with the whole schooling thing. Feel free to personal message me with any questions or anything, I am more than happy to help if I can! I hope that you can figure all this craziness out soon! I know its stressful, I remember when I was first diagnosed. Best of luck! -Mary