lloppyllama

Hello Harper, welcome to the board, I personally would recommend trying a Beta-blocker, as it has made a world of difference for me, so if you aren't able to do everything you used to, it might be worth a shot. Good luck and welcome!

Mary

I am doing a project on Dysautonomia in my health class and am going to have Q&A section to my presentation, and would love some feedback from you guys as to what would be good questions that "normal" people who dont know what dysautonomia is. (the Q&A will be after the presentation, so they will know the basic stuff we "teach" them but will probably still be unclear) Thanks for the help! I really appreciate it!

Happy new year!

Mary

I think that sounds like a good idea, and would most likely be helpful to you, however I would deffinetly check with the doctor who prescribed midodrine for you about the dosing first, just to be safe. Good luck, hope it starts to work better for you on a new "schedule".

I actually saw that article a few days ago when looking for a health article for health class, read through it and said to myself...I kinda feel like she has alot of what I do, perhaps she needs to go to a dysautonomia doctor....

I too am very vitamin-D deficient. I take supplements, and it my vitamin-D is still very very low. My doctor thinks that there might be something wrong with me where like I don't absorbe vitamin-D, but we aren't going to look into that for a few more months i guess...idk I'm not really sure.

I get goofy visual disturbances, my doctor (who is a my POTS doctor) just chalks it up to another weird POTS thing, and says to just ignore it. I would guess that that is all it is, if you were to tell you doctor I dont know what they would think it was since they are specialized in POTS, if I were you I would mention it to them, but not get to worked up about it, I would just tell them so that they are aware of the fact. For me usually when I have goofy things with my ears or eyes, they go away in a month or so, and then another crazy thing will appear....LOL.

So even though its quite bothersome and hindering, I wouldn't fret too much about it, our bodies are really messed up since our ANS isnt regulated properly, so goofy things are bound to happen!! Good luck, it if persists for too long or gets worse, I would think about looking further into it to see if there is a different cause than POTS, otherwise your just one of the lucky crazy POTSies!

Hope it gets better soon!

Mary

Clever!

Thanks guys!!! Im very excited to eat my cake, I will eat a piece for all of you!!!

Love,

Mary

Even though what Mack's mom said is true for this particular person, I would say he is a great doctor. The meds he has given me have made such a difference. I went from missing half of the school year last year.....to now this year being more involved in things and busier than anyone else at my school that i know....including upper class men, so i would say i have had a wonderful response to his treatment....just for an uplifting experience....i guess you could say.

But ultimetly the decision is up to you and your child, but I hope whatever you do works out well for you, good luck!

Im like Rachel, the only way i can sleep decently is to take melatonin, I myself take 5mg at night, at it makes a world of difference....so i don't know what led you to believe we were to avoid it, but it works great for me and was suggested by my pots doctor.

Hey,

Sorry your having such a hard time. I myself have never truly fainted, as that is not one of my symptoms, however I come close, and fall over a lot, but don't truly "pass out", like they said earlier though I didn't pass the tilt table test. Its so hard when they think its from depression, I kept getting told that too, because i was so frustrated i would cry and then they would think im depressed when actually i am a very happy person who loves life....so i know where your coming from, but its strange that you have actually been diagnosed and they are trying to tell you its just from depression. I dont really have much advice, but im here if you ever need to vent, as though im not in college, i am in HS which has whole different issues......as im sure you remember.....keep looking for a wonderful doctor though, they are out there!!! good luck!, and welcome!

Mary

aww thats very nice, it brightened my day! thanks for sharing!!

Dr. Fischer is my POTS doctor, he is who diagnosed me and he is who is treated me now, and i must say i absolutely LOVE him!!! I have had alot of different doctors in my day, and he is by far my favorite. He is very intelligent, wonderful to get along with, and just overall a great doctor. I would deffinetly look into taking your daughter there, as he is a doctor that is hard to get, and if you have the option, i would take it.

So yes i have had a wonderful experience with him and would deffinetly recommend him.

Hope this helps, if you have any question feel free to PM me!

Mary

I hate that. Whenever i talk to people about something they always bring up there little problems, like how "o yea yesteday i got a flu shot, and i can still feel where the injection was, and it hurts so i cant even concentrate" im like seriously!!!!!! omg!

In band i sit next to the biggest brat in the school and she complains about everything. As much as it i just look at it as an opportunity for me to become more patient. I also have to remind myself that god knows how well i handle this and how tough i really am, i shouldnt seek praise from those around me for how tough i am, when really god is the only one in life i want to please, and so he knows, and that is all that matters. But some days its really hard to remember that one...

Hang in there everyone, we know were tough, and if no one else can believe that its their own problem, i guess its just another thing we will have to get used to!

My body is the same way! In the summer i am unbearably warm, and now im always freezing. My hands are so cold its quite gross actually i feel...

But i would rather be cold than too warm, i handle the cold pretty well too, its kinda a mind over matter thing, and if i concentrate hard enough i actually wont be as cold, i just have to relax.

But yes like earlier posts have said, its just because our ANS system cant regulate our body temp like a normal person's would.

Good luck on keeping warm!

I usually eat a PB&J or i just have a granola bar type thing. Its too hard to make a "real" meal, plus there just isnt the time!

Yep I used to get that all the time before I was diagnosed. Now I will still get it frequently, but with the meds im on it helps control it so its not so noticeable and hindering.

Sorry, any I could recommend would be from Mayo in Roch, there are a lot of good ones there though. Most of mine are peds. docs too! Good luck!

Im not sure exactly what the two types are, however we increase our salt because our bodies cant circulate our blood properly, so if we have more to circulate then it will be easier on us. So if both forms have the whole blood pooling issue and such, then i would say yes.

Rachel, what is Provigil for? As if it is something that might help with my brain fog, I would be interested in looking further into it. Thanks.

wow thats alot to take in all at once!! great to have answers though!!!! congrats and good luck!!

I think that since dysautonomia is so unknown the doctors don't really realize what little crazy things out bodies do! Its so frustrating when you bring something up and they just think that your a wimp and complaining for the sake of complaining.

As for what to do, I would just start off not saying that you had a fever since you know what they are going to say...make them listen, challenge the things they say to you...dont let them just get away with it. For me you almost have to be "as smart as the doctor" and i actually have gotten pretty good as he has me labled as of now as a 3rd year medical student. He has also told me i need to get a life, but there are no worries as i am very busy and indeed have a social life, even though i am a big nerd. But as i was saying dont start out saying i have a fever, say over the past few years i have monitored my temperature and for me normal is around 96, not the average 98, so the other day when i took my temp it was 99 and though to someone with a normal temp of 98 that wouldnt be bad at all for me that is like more to the degree or 101 to the "normal". Perhaps if you execute things differently it will work better in your favor.

Good luck, I know how frustrating it is not being understood!!!!

Hugs,

Mary

People with POTS or other forms of dysautonomia are going to have their colds for a longer period of time just because there body already isnt functioning properly so add a virus to that and your gonna not recover too quickly...so that is normal for us, but it sure does stink!!!!

Hey Mary,

Salt tablets aren't always the best idea like Nolie said, they can cause stomach problems. My doctor just told me to put as much salt on my food as my mouth can tolerate. After a few days of heavy salt loading i have to take a break because my mouth will get soars in it from too much salt intake.... LOL

Liquids are a must need for me as well. I use about 60 oz of super concentrated Gatorade a day. And then i drink some other stuff as well. But since the Gatorade has a lot of sodium it can be very beneficial.

Good luck, I know waiting to go back to the doctor can be a huge pain!!

Mary

Thats a good idea to use a stool! haha never thought of that....surgeon it is! Plus i dont want my illness to stand in the way of my dreams!