lloppyllama

I too will light a candle and take a moment to stop and pray for her. I think thats a great idea, thanks sue!

Hello Carly, I'm glad you found us. You have had a rough couple of years dealing with all of this, sorry you had to go through all that, and still do. I'm glad that even though your doctors haven't officially diagnosed you, that you found out about POTS and now know how to treat yourself better. You said you don't have the money to go to a place that specializes in dysaut. like Mayo. I go to Mayo in MN, and I just though I would share with you the things that they do to "treat" patients, since you don't have a doc who is helping you, and it definitely sounds like POTS to me. First off they had me increase my liquids and salt. They had me start out by taking in 2 liters more of liquids a day than I had previously, and now I am supposed to take in as much as I can. As for salt it is the same, as much as my body can handle. I also am starting taking salt pills to increase my sodium. The other main thing they stress about at Mayo is exercise. I am exercises for 30 minutes a day, of upright exercise. I am also starting to run a little bit each time... hoping that soon I can make my exercise more strenuous. They also put me on metoprolol, which you are on, but I take my 20 minutes before I get out of bed in the morning, which makes mornings go a lot smoother. I am also on midodrine, and nortryptiline and melatonin for sleeping. I don't know if that will help much but, I hope things start to get better for you now that you have more support in your life! Oh I also use compression stockings, which are very helpful. Best of luck, and Welcome! Mary P.S. One more thing that came to mind, is that even though you do need to pace yourself, you really need to push yourself as well. For me that is more important than pacing myself. There are a lot of things in life that I want to do right now, and so I have made the decision that since nothing is actually harming my body with this illness and I just will be in pain or feel crappy, it is ok to push myself. I just have to be able to handle the "crash" and persevere through it and get the things done that I need to do. So I guess I am just telling you that you might need to make the decision of whether or not you would rather accomplish all the things you want to do while feeling ill, or feel healthy but not get everything done as quickly as you want, or at all. Either option is fine, and just becuase I chose to feel crappy but get to do more of what I want, does not mean its the right choice. But I think that for me, I needed to sit down and figure out what was more important to me, so that I could go on with life, and have a plan. Sorry for such a long post, Mary

It could just be from the skin there getting too much blood. I dont know why it would cause that, but our skin looks the way it does because it has circulation in it getting it oxygen, so maybe if it has too much blood it looks as though its almost burned. Do you wear compression stockings? I wear them all the time, and they make a world of difference for my blood pooling, it used to be very bad, but now it is much more controlled. Also are you on a vasoconstrictor? I dont know what clonidine and clonipin are, so perhaps they are. But if you arent on one, midodrine helps with my blood pooling issues in my legs, as it constricts the blood vessels and moves the blood back up my legs. Best of luck...perhaps putting lotion on your legs and feet before you go to bed would help with the "burned" affect in the morning. -Mary

Honestly I feel that is a reachable goal for your daughter, if it is really important to her. If she would gradually work up to that during the summer, I think that she would be able to reach that goal. I dont know if she is up for running a mile everyday this summer and gradually getting it down to under 7 minutes, but if being part of this volleyball team is really important to her, I think that it is a reachable goal, and that as long as she doesnt push herself too much right away, that she would be able to reach under 7 minutes. She just has to remember to be safe about it, and not make bad decision, such as not drinking enough before and after practicing her running, or running super fast the 2nd time she practices and not pacing herself, making her crash. Good luck, I hope things work out for her! Mary

When I had my TTT they didn't even ask if I wanted the injection. They just did it without...so I don't think you have to worry about that. You say you want to assume its POTS and not take the test....while that may be true and easier, I think you know how much doctors don't believe you already and if you just assume you have POTS I don't know how much help they will be without a confirmed test. But its entirely up to you, thats just my thoughts on the matter. Good luck, Mary

Thanks, I read that and really enjoyed the story...glad information is getting out there. That happened to me in english class about a week before school ended...so I definitely can relate. Thanks, Mary

Hey Mindy, Sorry your having such a rough time with figuring all this stuff out. The things you have listed are all things that I will experience on a day to day basis, and yes I do have POTS. However this does not mean that you do. While all the things you listed could be from having POTS, I cant say for sure that you have POTS, so I think that it would be best to do some more tests first. You said that your heart races...but does it get worse upon standing and then slow down again when you sit/lay down? I would look into getting a TTT or Tilt Table Test. This is the main test to determine if you have POTS. You said your doc wants you to go to a "shrink"as you put it. I am guessing this means he/she is telling you that its all in your head. We (people with dysaut.) were usually told that a time or two throughout the diagnosis process, so dont let that get you down and feel that this isnt real. Even if your problems would end up being from a mental illness (which I dont feel is the case) that doesnt mean it isnt real and that you are a falure, so dont let yourself become led to believe that. I think that maybe it would be best for you to go through a different doctor for a TTT, as I'm not sure you are comfortable with the one you are seeing now. The doctor who scheduled my TTT wasnt a POTS doctor at all, he specialized in sleep problems, but was my neurologist. What part of the country are you located in, or what country I suppose as well. Perhaps someone here depending on where you live, could refer you to a good doctor that you would be able to look into dysautonomia with. Good luck, if you ever need anything feel free to PM me, Mary

Hello Richard, To me many of the things you say sound like POTS...or dysautonomia. With this syndrome you can have pretty much just about anything happen to your body and my doctor will think its related to POTS some way or another...for me anyways. So yes I do think that you sound like you have dysaut., so most likely all the problems you are having are from that. I would have a Tilt Table Test (TTT) if I were you to find out once you get working with that doctor of yours who is consider dysautonomia. As for your blood pressure and heart rate issues, those both sound like POTS to me. The adrenaline problems do as well. The brain fog and dizziness are both things that all of us here are far too familiar with, so yes I think that could be dysaut. Your eye problems all sound like dysuat. things to me as well...as I experience all of them. People with dysaut. also get anxious very easily. Heat intolerance, and inability to sweat properly are also things that go along with dysaut. In regards to gastropherisis and GERD...there are many people here with Dysaut. and both those two issues, so they do go hand in hand. Now just becuase all these things do sounds like Dysuat. you dont know for sure that that is what you have...so treating yourself for it, could be harmful to your body if there is some other condition really going on. So I would look into the TTT. However if you do end up getting a diagnosis of Dysaut. the "treatment" plan that you have put yourself on sounds like an excellent start. Some things I would recommend to you would be...really pushing your self on a daily basis to be as active as you can, and to live a "normal" lifestyle as much as possible...as difficult as it is. Continue to push salt and liquids as much as possible (Gatorade is great if you like it or can tolerate it...I buy the mix and then use about 2 times as much powder as they recommend). Perhaps some diet alterations to make your stomach more "normal" along with perhaps helping your esophagus regurgitation. You asked about the exercise; whether tread mill with dizziness or stationary bike is better. In my experience I would say whichever one you can handle more exercise on and get a better workout is best. If that means using a stationary bike so that you push yourself more, then do that. However if that is the case, once you do become more tolerant of exercise, I would start using a treadmill to do walking, because that does use more of your muscles in your body because you have to hold yourself up. Best of luck with finding a diagnosis...I know what a struggle that can truly be!!! If you have any questions on what I meant, or just on anything else you think I could help you with, feel free to PM me. Mary P.S. Rachel lives in Georgia I believe, so if she really likes her doctor then perhaps you could look into seeing him. That is a bit far though. I would perhaps make a post about doctors in the south...and see what you come up with, Good luck!

If I were you I would call in to your doctor that you like that is leaving at the end of the week, and ask her to refer you to someone else who she thinks is a good fit for you. Then look into seeing them about your BB and POTS in general. Always remember, that even though you are lost and scared right now, everything will be ok, I know thats hard to believe sometimes, but its true, you will be alright, no matter what gets thrown your way. Good luck! Mary

Hi Hollie, I apologize in advance if this comes off as me being insensitive, or that I don't understand, but I do, this is just how I truly feel. However I want you to know that I do think your symptoms and such are real, and I do care that you feel healthy. In regards to all of your doctors telling you that you just need to drink more, eat salt, and exercise, they are right, and that is about all they can tell you. I go to Mayo, and have very severe symptoms, and am dealing with different doctors than you (most likely) because I am in Pediatrics, but that is what they tell me too. I am on medications and such that have made a tremendous difference, but the salt, liquids, and exercise have made just as much a difference. I know you said you are drinking and eating salt, and you literally can not take in anymore than you already are. That is where I am at with things as well. Just remember, what the docs are telling you about liquids and such IS really all they have to offer. There really are not that many other meds out there for us to try...this is just a sucky illness that doesn't have a whole lot of treatment options. You said you're on the BB but its doing weird things. Tell your doc that, and try and get put on a different BB. There are two things that I am trying right now since there isnt much more the doctors can do at this point. I am trying to take salt tablets to increase my sodium since I am already taking in a lot of it. Also I have been seeing a psychiatrist at Mayo to learn Biofeedback...in hopes of getting rid of some of my symptoms in particular by doing this, and also to learn an effective way to control them once they do appear. Sorry that I dont have a doctor to reference you to, if you are really uncomfortable with the doctors you are seeing at mayo, I could ask my peds doc what adult docs are good at treating pots, but I have a feeling its just going to be the same ones you are already seeing. If I were you I would look into perhaps changing your BB, and seeing a psychiatrist to learn biofeedback skills...but I would go through the doctor who you feel most comfortable that you have seen thus far. Good luck, Mary

Hello, I'm sorry that you're having so much fatigue that is debilitating you like this. I guess what I would say from my experience is that, yes it is from POTS, and that you are going to have this fatigue and its going to continue to get worse until you make yourself not lay down when you are tired, as hard as that is, I know. But that is the only way to make it go away, you need to become more active. I realize that you might have other conditions that would stop you from doing this, but that is just my suggestion, and what my doctor would say. While this fatigue may be from something else, the chances are much more likely that it is just POTS. Sorry if I am coming across insensitive, I really do care and don't want you to be in pain, but I know for me it is really important to not let myself lay down unless I faint. Once I get to that point I usually will let myself, but it is just SO important for me anyways to not "give in" to the pain, weakness, and fatigue. Good luck! You'll be in my prayers, Mary

Awesome, thank you!

Ok so I am wanting to try salt pills or tablets because I eat so much salt that my mouth gets sores and I still am being told to eat more. So I thought that I would try salt pills, but I cannot find them anywhere!!! Where do those of you who take them get yours from? Do you have to order them online type of thing, or did you find a store that still has them? Thanks, Mary

In regards to the doctors telling you that there isn't anything they can do to help other than what you are doing, doesn't necessarily mean they don't believe you, this is just a illness where there isn't much Dr's can do. I'm sure you already know this, and don't need me telling you, but just thought I would remind you that there isn't always going to be much that a doctor can do for you, because you are already on meds and know how things work with salt and fluids. Good luck, sorry things were so bad the other night, I had a pretty bad ER visit myself lats month, so I know how you feel! Mary

I will get things kinda like that. My arms will go numb, but I can still feel things with them. A few weeks ago my legs went numb, I could still feel, just not as much as usual, and also I did react to the hammer thing. However I could not walk, my doctor just said it was from pots. However I do not know about your daughters case...that does sound quite different than mine, because when my body goes numb, I still can feel when I touch there. Sorry I am not much help. I would look into things further, perhaps you could do a nerve conduction study, I had one of those when I was having peripheral neuropathy issues, about a year and a half ago. Good luck! Mary

I myself am a high school sophomore right now. It has been rather difficult, but I have managed to keep up my 4.00. I am not always in school but I go in after school when I can and get the work to make things up. I really have to work hard at my foreign language, as I am not good at spanish at all, and I dont enjoy it, so learning the things on my own is quite tricky. I am way behind right now and have about 6 tests to take in the next 8 days of school I have, but it will hopefully all work out well, and I will still be able to get an A, but if not, I do also realize there are more important things in life than getting amazing grades in HS, especially someone in my condition. Right now I am trying to write a paper for English class, and then tomorrow I will work on my speech for it. But it is really hard for me to think right now, and I just have to keep making myself work at it, because I know it is something I have to do. I like to tell myself that if I get something done now, then I can go pet my bunnies later, or something to that effect. Its really hard to keep doing that when I just cant concentrate or think clearly...but I have to get it done, and I cant just stop an pity myself for what I cant do. I hope things get better for your daughter soon! Mary, you can PM me anytime with questions if you need to. O and I do not have a 504 or an IEP.

I take Nortryptiline 50mg at night time along with 6mg of Melatonin. Nort. is a prescription drug, however Melatonin is not, it is a natural chemical in your body that helps with your sleep. I have not had issues with either of these. However, when I dont take Nort. I dont sleep and am in great pain the next day, however I think this is from not getting the pain med relief that I use it for, which in turn makes me not sleep. So I would say they are both safe in regards to dependency, for me anyways. Hope this helps! Good luck! Mary

I cant say that I get that way everyday, or to that degree, however I do know that I will get very "fuzzy" in the thinking area, and will just be super out of it, especially when I dont feel well.

I took 300mg once daily and then I was supposed to eventually go to 3 times a day, however after about 2 days of taking it, I was increadibly ill from it. I was passing out left and right, and a lot of other issues. However I was also very sick at this time, more of the peak of my illness, so I do wonder if that had something to do with it. I might be interested in trying it again here in the future and see if I would have more luck, or react the same.

hmm....that is odd. You're right it does not sound like POTS, but maybe going to a different doctor in general would be of benefit, as the one he has isnt really doing the trick. Good luck, hope it gets better soon!

Obviously like any other neuropathy, it deals with your nerves, but I believe this one tends to be more in the feet, with a burning sensation more commonly. Sorry thats about all I have got for you, hopefully others have more info. Though you could very well have both POTS and some type of neuropathy, I do think that it is more commonly found that your POTS will just present symptoms that people with neuropathys would have. For me before I was diagnosed with POTS they thought I had peripheral neuropathy, and they aren't sure if I don't now, but they think it is just my POTS that makes it seem like I have that. Our nerves send the wrong signals to different parts of the body sometimes, because the automatic nervous system controls what signals nerves send, so when the ANS isn't working right, nerves will send incorrect signals. So that might be what is going on, however you could have a neuropathy along with POTS, perhaps ask your doctor to look into it next time you are there, if it is really bothering or worrying you. Good luck, Mary

That just kind of goes along with POTS, for me increasing my salt intake and fluids really helped with the tiredness, however I definitely still get that quite often. I would recommend trying Gatorade if you haven't already, as it covers the fluid and salt part.

For me my mother and other docs before diagnosis did like to blame my anxiousness, or lack there of sometimes....on why I was ill and having HR increases. So I guess just dont worry about what they think, making you more anxious, about being anxious, and in turn worrying them more, or skewing the results. But my hyperactive anxious personality did not make them think I was not actually ill. Good Luck Mary