Aquadiva

Thanks for the replies. For those of you taking 1mg tablets, are they by prescription? The ones that were suggested to us are otc and only 180mg of sodium per tablet. It is suggested she takes 6/day. On the bottle, it says 5-10. I know it will help some, but really doesn't seem like it is very much. They are buffered, though, so that is good as she has IBD also, and we don't need to be adding any insult to her digestive system.

We are going to try salt tablets for my daughter because when we were on vacation, she was very lax about getting enough salt and she had a relapse. She is slowly doing better, but we have decided to add the salt tablets especially when she is at camp and too busy to concentrate on enough salt, not to mention it being available to her. (no outside food is allowed) I was just wondering how many do you take and if there are any tips or anything you could pass along. Thanks!

My daughter was terribly fatigued on propranolol, but switched to metoprolol, and it is much better.

Thank you for all the replies. I really feel that it is a very high requirement for a sport that doesn't even include any running (unlike basketball, track or soccer). My daughter could probably do more sit-ups, pull-ups and push-ups than most on the team (in PE she beats most the boys), but that isn't a factor. She is very strong, just not a long distance runner (add on her medical conditions, and it is probably on unreachable goal). I don't know if talking to the coach would do any good, but it may come to that. I doubt he would take her medical conditions into account (probalby would write her off as being UNABLE to play), but if it comes down to trying out or not, we have nothing to lose. Why can't she be judged by what she can do on the court, not on the track?? It will ultimately have to be her decision, but it is hard as a mother to watch your child struggle. To see chronic medical conditions affect someone so young who was always able to "do it all", is frustrating. I, as her mother, am supposed to be there to make things better, and this I have no control over. She has become a much stronger person due to all she has been through, and has remained SO positive, but I am afraid it is starting to wear on her. Life is hard enough being a teen these days; add an autoimmune disease, POTS and throw in exercise induced asthma--it just goes to show life isn't fair. Her biggest concerns should be friends, school, sports and what to wear to the homecoming dance. I am a firm believer that everything happens in life for a reason, it is just trying to figure out the reason that can be most challenging! We will just try to take one day at a time and concentrate on what we have, which is a lot to be thankful for.

Okay, so here is the deal. My daughter who loves volleyball is already stressing about try-outs (second week of August). In order to play varsity in our town (has an outstanding volleyball program--at state almost every year), you have to run a 7 minute mile. We are thinking this is almost impossible. Her POTS for the most part is doing really well, but she also has exercise induced asthma. She is very athletic, but not a long distance runner and doesn't have much stamina. I am just wondering if you or anyone you know with POTS would be able to do it. It is a hard task for a completely healthy person. I know how much she loves the sport and would be so happy to be a part of such a successful program, but is it worth the stress/anxiety? I know only she can decide, but it is really hard for her to even think about.

Jen, I sent you a message.

Thanks for all your replies and suggestions, I appreciate it! We are just trying to get through the last days of school. She is very stressed with the make-up work from 3rd quarter still hanging over her head. She should be able to complete it but only if she is feeling well. I guess all we can do is hope for the best!

My daughter was diagnosed with POTS in March. She went from a 4.0 student to barely being able to go to school let alone do homework. We just got an IEP, and I am wondering if any of you have expereince with that and could offer suggestions on what to put on it. We are looking at a later start in the day, like 3rd hour. She is also thinking about taking a couple classes by correspondence to lighten her load at school and be more flexible with homework. The brain fog has been SO bad for her even with her other symptoms under pretty good control. Any suggestions there??

Thanks for all the replies. Like the last time, in a few days it was much better. She is still not as good with POTS symptoms as she was before the neck pain, but slowly, but surely, right? At least she made it to school the last couple days. I guess it will just take time to figure this all out, if that is even ever possible. It will be interesting to see if this neck thing continues and correlates with her feeling terrible.

My daughter was doing much better, but is apparently having a setback. One of the first symptoms she had before being diagnosed 7 weeks ago was neck pain with dizziness and headaches. The neck pain went away after about 4 days, so we didn't think much of it at the time. Now it is back with a vengeance. She had an episode of not being able to really see last night. She said she could see colors, but not make anything out. It only lasted about 5 seconds. She didn't just get up or anything, so it is kind of odd. Also last night the severe neck pain started in again. It is mostly to one side, kind of at 7-8 o'clock. Anyone else experience anything like this? It is very disabling for her and I do have an appointment with her ped tomorrow, but she hasn't seen her since she was diagnosed by someone else, so I really don't think we will get anywhere. Any ideas/suggestions?? Ugh! Just when we thought things were really turning around!!

Would the person that has the list of high sodium foods please reply?? I would really like a list. We have been label reading, but if we can just focus on certain foods, that would be helpful!

Holy COW!! 4-11?? Do any of you "count" your sodium?? We too, were told as much as you can tolerate, but I'm not sure if we don't have an actual "number" my daughter will get enough. I have a hard time getting her to salt her food, so we are better off buying the processed foods we were always told not to feed our kids! It is SO hard to change the way of thinking!! Thanks for all your replies! We are aiming for 2-4g right now. We will see how that goes!

I think I forgot the heat issues. If I get too warm, I will feel the same way. Very weak and nauseous. It even happens in the shower as I like the feeling of hot water on my skin, but it makes me sick very quickly. Hot tubs are out of the question.

Thank you so much for the replies! What is an "EP" cardiologist?? Yes, I have very good access to specialists, I just worry more that I won't have any thing that could be causing these symptoms than what could!! I would love to have a reason for feeling so crappy all the time. I have just kept it to myself for the simple reason that I fear they would think it is all in my head! My daughter was much more severe and sudden that what I am now, but perhaps years ago, I could have said differently. Her main symptoms were severe headaches and dizziness. Mine is more of a sick, weak, fatigued feeling along with frequent headaches. I also have contributed it to being out of shape, but I wasn't back when it started. My daughter is 15 and she had all the autonomic tests done with the TTT. She was almost written off as having migraines only.

I don't notice my heart "racing" as much as a fluttering, but it could be racing I guess. It also seems like it could be skipping beats. It also kind of takes my breath away. Hard to explain exactly. One other thing I didn't mention is that I get VERY shaky. I am shaky all the time, but get really bad if I don't eat regularly and frequently, and feel sick. I have mentioned that to the dr. and my glucose has been tested and was fine. I didn't pursue it any further, but that has not gotten better. Oh, and concentration problems. Sometimes it is terrible. I thought maybe I have ADD!

I haven't ever pursued a diagnosis because I thought that my issues were probably just "normal" for me, or that I would just be told that I had anxiety. But, now having a child diagnosed with POTS and learning so much, I wonder if I could be suffering unnecessarily if I were to try forms of treatment if it is indeed POTS. This is what I have experienced....I can't remember having as vivid of symptoms before my first child was born. Following having children I couldn't stand long enough to blow dry my hair, or even a hymn at church. I remember DREADING going to church because just simply standing was such a hard task. That has improved over the years quite a bit, but I still get totally exhausted just shopping for groceries that I can't even put them away when I get home. I can't run many errands at once. I get so tired I go home early and will even go back to the stores later the same day if I feel I can do it. I am tired all the time--I mean all the time. I wake up tired, but I don't sleep the best at night-I wake up many times. I have thought about mentioning that, but would get the whole lecture of lifestyle changes, etc. etc. I have stomach issues. I am nauseated a lot as well as bowel issues I have just written off as IBS. I get frequent headaches. I have a lot of what I would call "palpitations or fluttering". Again, afraid to even mention it to the dr. as it would be just written off as "anxiety". I am contemplating asking for a TTT at my dr. visit next month. I just hate to go in like a hypochondriac or "ask" for a test to be run. But, I have to ask, when any of you have had your TTT done, how long do they keep you upright? My daughter they just kept up for 10 minutes (she had obvious tachycardia after 5 minutes), but I have read that sometimes it can take up to 45 minutes for the tachycardia to show up. Any thoughts/advice?? Thanks, you are all so wonderful. I am so glad I found this forum!! I have learned a lot by reading your posts.

I am wondering if any of you know how much sodium is actually suggested on a daily basis for POTS??

May I ask how long it took you to get an appointment? I have heard that it can take a year.

Hi! This is my first post, and I am very new to the POTS world. My daughter was just diagnosed last month. She is currently on propranolol, but her dr. is switching her to metoprolol. Anyone have experience with these? The propranolol seems to make her terribly fatigued. Her dizziness and headaches are less severe, but now the fatigue has her in it's control. Any luck with these meds? I am so glad I found this forum!!!!