lloppyllama

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!

Like ajw4055 said, Neurontin (or generically Gabapentin) is another medicine used for that type of illness. I was put on it before being diagnosed with POTS, and it made me really high/ out of it. I couldn't walk i had to be carried out of church, and i just kept fainting/falling over. It really freaked my best friend out. So that is one you could look into if you are looking for something for more the other nerve problem type things. Good luck!

I had that exact same problem. My migraine lasted for about 6 months straight, it would get better at times, but it was always there! None of the migraine medicines worked...not the preventatives or for acute problems. Once I was finally diagnosed with POTS, and started my treatment plan the migraine when to a constant headache. I was then put on medicines for my POTS symptoms that made the headache go away. I still usually get a migraine 2-3 times a week, but I have learned to deal with that. One thing for me is to put something cold on my neck, that helps with the blood vessels issues, and usually makes my head stop spinning at least. I also drink Gatorade, as that has more sodium that propel. And then I eat something salty. And I try not to lay down as in the long run that is bad for me, so I pretty much just suck it up and go on with my day, and no I'm not going to lie to you, that is very hard!!!!! But really it is what has to be done. I hope your feeling better soon!!! Lots of love, Mary

Im so sorry to hear that Pat. My thoughts and prayers will be with you, your mom, and your family. As uneasy as this will be for you, I hope things go as smoothly as possible. Take care, Mary

I'm only a high schooler, but i work at an apple orchard, however i plan to attend college to become a doctor, bot sure what type yet though. Not children, but i don't know what i would want to specialize in, if healthy enough though i would want to become a surgeon, otherwise something in diagnostic medicine maybe...

Love the pics!! I have some goats like that too!

Deffinetly a mixture of both.

Hi Laurie! Welcome! I myself only have the POTS diagnosis out of your list, however there are many others here with EDS. Also there are quite a few with a chiari malformation too. I hope that your blog will help your family understand, as it can be hard going through all this crud when you feel so alone. Just remember that your not and that we are all here for you when you need to know you have some friends that actually can say "I understand" and actually mean it. Again, welcome, I'm glad you found us, and I hope if you have surgery it goes well for you. Good luck! Have a wonderful night! Mary

I have been told that I have all to a variety of those types of neuropathy and such, however my POTS doc says that really its just from the dysautonomia. I have decreased sense to touch temp and such in my right foot...which is where i have all my issues...and where this whole ordeal with pots started...but yea im not really sure, as my doctor said it was pots, not actual nerve damage....

Yes I can see how that would be a problem, I dont think that your doctors think you dont know what you are talking about or are trying to say they dont know what they are doing, they probably just feel that they have already thought of those things and since they are doctors they know best and realize that it isnt really something that is a problem. You could say something like, I'm glad I'm on these meds as they are really helping me in dealing with this (if that is the case) however meds can be rather harmful to your body and I was wondering if there would be anything more natural like vitiman supplements or something we could try that wouldn't be so damaging in the long run to my body. Good luck!

Blood pressure just doesn't regulate itself properly, so it could be either high or low i believe....I'm not positive but am pretty sure, its more common to be low, but some people have it high. Heart rate for people with POTS is very high when upright, it is still high when in the laying down or resting position, but not to the degree of when standing....but it will be significantly higher than that of a "normal" person. Good luck with everything, i know it can be very overwhelming when first learning about things.

That is very true that we will be tested for many things most people will not, so it is deffinetly important not to read to much into things, as if we weren't sick with dysautonomia we probably never would have know about a problem.

hmm thats interesting, thanks pat!

Ok so most nights I will get diarrhoea. When I'm going to need to go to the bathroom I will know as my stomach and back hurt as expected, but my ankle/foot also gets very severe pain as well. My foot has problems most of the time during the day and is always in pain, but when I'm going to need to have diarrhoea my foot aches and shoots pain terribly and gets all swollen....anyone else have anything crazy like this happen??? I'm just rather confused as what makes that occur, I mean I know poties like us have our weird crazy things, but this one just baffles me some days... Thanks! Have a wonderful evening! Mary

yep its a blood test. I dont quite remember if it was a POTS thing, or POTS with pain thing......as the way i got POTS was through an ankle injury that still isnt healed and have pain there. Now that i think of it it may have been the POTS and intense ankle pain that led my doc to investigate my vitamin D levels, however im not sure one that on. I think it probably does have to do with that i like to stay indoors more with heat issues and such. However i work at an apple orchard on the weekends and i am outside alot there, so im not sure. I myself am thinking that i might have eds, however i only think this from reading about other people's symptoms and so i trust my doctor and if he hasnt brought it up as an issue, once and hopefully once my pots is cleared up...if my foot and that kind of pain i will investigate further, until then its not a good idea. I will send my doctor an email after talking to my mother, if she thinks its ok, and ask if maybe my dosage needs to be higher on the vitamin D and see if that would help with the pain in my ankle as well. thanks for the help, have a good night! Mary

Hello everyone, I am just curious as to why those of us with POTS have so little vitamin D in our systems. I was low when I was diagnosed so now take multivitamin daily. I take in 800 IU of it a day and am still low.....does anyone know why? I'm just rather curious I guess. Thanks, Mary

are you on any pain relievers, or medicines that would thin your blood other than advair?

i take vitamens, iron, and melatonin. I dont know if you are on melatonin or not but it has helped with my sleep significantly. it might be worth checking out. If you dont know what it is its the hormone in our bodies that differentiates between being awake and sleeping.