lloppyllama

For me when I take deep breaths it gets worse, but I would still check it out with your doctor just to be sure.

Hey Zach,

I'm glad you found us, so first of all welcome! Sorry you have reason to be here, but none the less, I'm glad your here. As for the fact that you cant have BB's there are other meds that help. For me my other main med is my Vasoconstrictor called Midodrine. Many people here take this and find much help.

Now the fatigue, nausea, Dizziness, Palpitations and Stomach aches are all "normal" for someone with POTS to have. I get them all on a daily basis, even on meds, but they become much more manageable. To help with dizziness, try tensing your muscles in your legs and squeezing your butt, haha I know. Also scuating (sorry sp) down helps too. For the nausea I eat carrots and take anti-diarrhea medication, that seems to help alot. My heart will hurt too, there isnt much I have found helps there, I will ice it sometimes, but that usually doesnt do much.

I have found that just doing therapeutic breathing tends to help me a lot. Just taking slow deep breaths in and out while concentrating only on that seems to be quite helpful. You would have to work on it and figure out what works best for you, but that is what I like to do.

I hope I can be of some help to you, feel free to PM me with any questions you might have, I would love to help, I remember what its like to be in your shoes!

Good luck,

Mary

Yes, my stomach does this. I have lots of digestive issues, along with many other people here as well.

Do you have more specific symptoms? We might be able to help you more that way.

Good luck, hope it starts to feel better soon!

Mary

Hey Casper,

I think you seem to be seeing the brighter side of things here, and I think you knew it and saw it before, but everyone needs to be sad, and hit a low point to be able to get to that "happy" place. I'm glad that it seems your at peace with all of this more so. Good luck, and never forget that we are all here for you, and do truly care!

Love,

Mary

Wow, I am so sorry that you are feeling so unloved and lonely right now. Everyone feels that way sometimes, but when you are sick it is definitely magnified.

It is very hard to count your blessings when you feel like you dont have many at all to count. I try to look at being sick as a blessing. For me there are religious aspects that is have factored into it, and with God helping me along the way, I dont feel nearly as alone, and I do feel blessed to be "cursed" with this illness. I dont want to be "preaching" to you, because if you dont have the same views as me...its probably not going to be appreciated....but I just like to look at this burden as the cross that we are meant to carry, and so I want to carry it well, as God's reward for me in heaven will be much greater. That is just how I deal with it, take from it what you will.

As for actually getting people to care more perhaps. Maybe you could get in touch with some older friends or relatives who wont be so busy...and talk to them through the mail. Nothing super deep or painful to talk about, but just friendly reminders to say that you care about each other and that your in each other's thoughts.

As for your husband, maybe you could talk to him about this. I dont know how your relationship is with him, and how comfortable you are with speaking to him about things such as this, but I think that if he knew you were so lonely, perhaps he could try and be there more, even though he is so busy, or when he is at work, that he could just call you over his lunch break to say hey quick, and let you know that he is thinking of you.

I hope things start to be better for you soon! If you ever need someone to talk to, feel free to PM me, I would be happy to respond, because I do care!

Good luck, you'll be in my thoughts.

Love,

Mary

For me, at the end of the day my face and ears will get red and are extremely hot, its like they are radiating heat...haha. But yes I know what you mean. My explanation of this is just that at the end of the day my body is tired and can no longer control the thermo things in my body, so my face flushes and gets very very warm...not sure if that is the actual reason, but that is my theory.

Ice can help sometimes...Good luck, I know how annoying it is, it happens most everyday

Mary

Yes I too thought that post viral pots was the "easiest" to recover from....thats weird that she would tell you that, since I believe alot of us thought it to be the opposite. hmm I dont know what to tell you. As for that med, I have never tried it or heard of it, so I'm notmuch help there either, good luck!

Mary

I'm not sure but I get that as well.

I eat a lot of carbs, as thats all my stomach can take. Those being foods such as, cheese and peanut butter crackers, pretzels, fiber one bars, and thats about it, o yea waffles, ha ha. And then I drink a ton of Gatorade!

Hope this helps,

Mary

P.S. If I actually feel like eating a real meal, I will eat pasta w/o meat sauce.

Hmm, though it seems odd for us POTS patients to have brandycardia, since tachycardia is actually in our "name", it does happen, and for me I will have chest pain during both fast and slow heartbeats.

Mary

Hey Angela, just wanted to wish you a happy birthday!! I hope things are going well for you, we haven't gotten to talk in a while.

Love,

Mary

I cross my legs or sit on them all the time. I also prefer to sit on the floor cross legged (indian style) rather than in a chair, its easier and more comfortable for me. But I do cross my legs and sick on them when in a chair, I also cross them when standing. I too am very fidgety! haha. I do wonder if its bad for us to cross our legs, clot wise, but my doctor did tell me its good for helping the blood sometimes.

Mary

Happy Valentines Day!

I have done it before, and honestly I wasn't a huge fan. First off my psychiatrists who was helping me with it was a total jerk, so I then just got some CD's to do it at home. So I guess I haven't done a lot of the real in the office biofeedback (I have done some though) but I have done it at home. It didn't really work for me, but I have my own techniques that I use that I just taught myself, that are helpful to me, most of it is just breathing stuff. So I suppose you could call it biofeedback, but I didn't really like the stuff they taught me, but I have come up with my own that works well for me.

I used the CD's for a few weeks every day two times, and they did help me relax, but didn't make my migraines go away, just made me more tired and out of it, haha.

So I guess my advice would be to go ahead and try it, but if it doesn't make a huge difference, don't spend tons of money going in to the clinic to do it, and just teach yourself breathing techniques at home to get your HR down.

Good luck, I hope its helpful for you!

Mary

I'm not really sure if I can be any help, as I honestly don't know what either of the things you were talking about are, however I am a high school student with POTS, (sophomore this year) and I am still attending school regularly. So I haven't had any special "plans" or what your talking about, but there are things I have done that are beneficial to me. If you want to PM me with questions or anything I would be happy to help out in any way I can.

Good luck!

Mary

Hello and welcome!!!! I hope you can get diagnosed soon and have some reassurance that you do have a real condition, whether or not it turns out be POTS, or a different form of Dysuatonomia, maybe you have NCS or NMH, it is still good to have a diagnosis so you can properly treat it, good luck!

Mary (my name is Mary too! )

happy Birthday!!!

Hello,

Just wanted to welcome you to the forum, along with tell you that my Midodrine doesn't really affect my blood pressure too much either. ONce I stand up and such it doesnt get as low though, so that makes a difference, however overall throughout the day its about what it was w/o the Mid.

Good luck, Feel free to PM with any questions or if you just need to vent!

Mary

For me I take my 5mg and then about 20 minutes later I am out of it. So that is good if I am going to bed and just lay there for the 20 minutes while I wait, but if I find something I still have to do and try to stay up, I get really sick, and high too. So thats not good. I'm not sure when you take it exactly, but if your not getting 8 hours of sleep that would probably explain why you are so groggy. Maybe try taking with some bread or something like that at night, so that its not the only thing going into your stomach, perhaps that would help with the grogginess in the morning.

Good luck!

Mary

I use melatonin every night. Right now I take 5mg, but once this bottle runs out I'm going to start taking 6mg, which is the max dose my doctor told me to use. So your 9mg sounds high to me, but I might only be aloud 6mg at most because I am still only a teenager. It works well for me, I too have RLS, and so the melatonin helps me get to sleep and then stay asleep. I am also on nortryptiline 50mg before bed as well.

Good luck!

Mary

I know what you mean, I find myself forgetting quite often...which is not good for my health at all!!

I really have not yet found anything that helps me to remember I just try really hard to remember the times I take them, and then take it that time everyday, so that I dont forget. When my sleep paterns are different that does mess things up somewhat.

I use a container for my meds that are labled for each day of the week, its like a giant one of those SMTWTFS things.... but there is one for each day, with 4 different times to take meds, which works well for me because I take meds 5 times a day, and the 5th is right before i go to sleep so i just keep it by my bedside. This way I will know if I have taken my meds yet or not, but that doesnt help me to remeber all too much.

Good luck!

Hello, and welcome....I know how you feel with the migraines, I was like you and had them for a long time straight before being diagnosed, I had a migraine for about 5 months straight before I was finally diagnosed with POTS and began to feel some relief after starting treatment, I hope you will feel some relief as well, in due time, best of luck, and welcome to the family!

Mary

I think Dr. Low sees teenagers/children, I am not sure on that one, but have a friend from this site who is about 20 who see's him, and has been since she got sick a few years ago.

I believe I have already told you my experience with Dr. Fischer, but like I said before I wholeheartedly recommend him, and honestly believe that your daughter would most likely really like him. I am actually going to see him tomorrow But yes he is a wonderful doctor!

Good luck!

Mary

Thanks, thats a very good one!

Hello Heather, welcome! Im only 16 so I have just recently gotten the "chance" to get my license. However though I dont have the same exact issues as you do with fears of driving, I am worried I will get bad abdominal pain and have trouble breathing, and then like "black out" kinda. I have been really busy and have not had time to get my license, but honestly I'm really quite scared as well!....like you said, what if something happens and I end up crashing...that would not be good.

I dont know how many meds and such you are on, or what exactly your treatment plan is, but maybe you could alter something there to make it more "intense" and perhaps that would help. Good luck!

Welcome, and happy new year!

Mary