Aquadiva

My daughter just had surgery on Monday. I'm not sure if her POTS was under very good control at the time as she was ill from another issue. However, after surgery she started to get REALLY dizzy and had vomitting. The strange thing is that it is only in the morning, when she simply raises her head or even the head of the hospital bed. She had major abdominal surgery, so throwing up and dry heaving was not pleasant to say the least. The dr's blamed medication. I think it is POTS. She will go up to 8 hours without ANY medication and she still gets sick, and takes Zofran before getting up. Yesterday and today, she managed not to vomit but still feels terrible until the afternoon and cannot be out of bed. Do any of you have any experience or information that might be helpful? Each day seems to be a little better, but we are concerned about it happening again as she has two more surgeries coming up.

This is my daughter's second try with ritalin. She really doesn't see any difference when she takes it, but it has only been 2 days. No positive or negative effects. She took 10 mg the first day and 20 the second day. When she tried it before, the same thing-no benefit, no bad side effects. She tried it longer that time, but was on a beta blocker at the same time which we now believe has been making her worse. We have added this back on our own as the only other meds she is taking are bcp and fluoxetine just to see if she notices a difference. Should she notice a difference right away with stimulants? She isn't interested in continuing taking it without seeing a benefit, but I have to wonder if it would take a longer trial? Part of me says no as it is such a short acting medication. She needs it mostly for concentration and energy.

Your poor daughter! How is she doing now? Well, we saw her new primary care doc and we were VERY happy with him. He is definitely more willing to try different drugs and different combo's. Got more from him than all other visits combined with specialists! He thought maybe Inderal would be worth a try, but I told my daughter not to take it last night. She didn't and said she felt better today. I SURE hope that this could be one of the keys. I hate to think that all this time the drugs have been making her worse, but will be happy to have an improvement. I feel like the specialist diagnosed her (which had already been done 2 years ago) and then thought his job was over! I am SO much happier with this new doctor already!! He is willing to look at the research and would even work with a doctor out east that I talked to on the phone. My daughter is still waiting to see Dr. Grubb, and even though we are very happy with how things seem to be heading, I think we will still go regardless. Have been waiting since April already and were told it would probably be another couple months. I think Florinef would be worth a try, but daughter doesn't want to blow up like a balloon. She is going to try adding Ritalin back in now that she isn't taking the bb and see if that gives her any added relief (didn't notice any difference before). She tried Mestinon and it made her nauseated without any benefit. Midodrine is another one that I am interested in along with EPO. She goes back in a week and a half, so we will discuss more with her doc.

Did he also try the extra fluid and salt before starting fludrocortisone? My daughter has been doing that continuously, and wonder if the fludro will still help? I'm not familiar with doxepin.

That is the million dollar question. She is on her 4th dr. for this if you count her pediatrician who basically wouldn't do anything. That is what the current dr. also said about being the first meds, but he switched her from metoprolol to propanolol first (and added fluoxetine and bcp). She was on propanolol 2 years ago and felt worse, but it wasn't the extended release, and I guess propanolol has a better history of improving symptoms?

I am looking for other people's experiences or knowledge with beta blockers. I am wondering if maybe we need to ditch the beta blockers all together and try something else? But what? Daughter hasn't tried florinef or midodrine. Fatigue, dizziness and brain fog are the main issues. Any thoughts/experiences?

How much and how often? How great and immediate are the improvements?

I totally agree. NO ONE knows WHEN or IF anyone with POTS will get better! And, I am NOT willing to just WAIT for SOME day to arrive IF it ever arrives. You have to live your life to the fullest every day, and I will not rest until we have exhausted every possibility of having it the best it can be. For some that will be better than others, unfortunately, but just because she "should get better over time", doesn't mean I will give in and wait while precious days/months/years pass her by. Sorry, but I don't give in easily, and I will not stop fighting until I am satisfied. Maybe I will NEVER be satisfied, but then I will just keep on fighting! I will do everything within my power to make sure she is feeling the best possible. The good part is that she had a little over a year when she felt pretty good--and then BAM! It hit again. And, that may be what she is facing for the rest of her life, on and off again. But, hey, I will take that over always being sick! In the meantime, when she is sick, I need to help her feel as good as she can and be as normal of a teen as she can. MAN! Being a parent is hard--let alone being a parent of a teen-age girl with 2 chronic illnesses/diseases! It just goes to show that life isn't fair and we have to be thankful for what we DO have. And, for now, I know we DO have medications out there that might help her feel better. Maybe none will help, but they ARE out there to try and why should she be denied the opportunity to try?? I will get off my soapbox now. So, Mighty Mouse, I am just curious, we don't really know when the POTS came about, but you mention that it is more likely of a recovery if she got it post-viral. It seemed that it was after anesthesia, but she had other things going on at the time so it is kind of hard to tell. I am sure I had POTS also when I was a teen and still have some symptoms, but was never diagnosed. I couldn't stand long enough to dry my hair, or once that was done, curl it, or stand for a hymn in church for some examples. I still get really sick and weak feeling if I stand in line very long, shop too much, get too warm, etc. I have to lie down or at least sit. So, I think it is possibly hereditary as well in her case.

Well, we are at Mayo and that is the response I got, that medication really doesn't play a huge difference and she should gradually improve (gradually? Well, she is certainly not heading in that direction.). There are MANY drugs she could still try, but they really seem to like the "wait it out" approach. I don't agree. We realize there is no "cure", but I feel if there is something that might help get you through, why not? Isn't that what a crutch is? If you have a broken leg, you don't need crutches either! Your leg will still get better without it and much faster than anyone's POTS! Sorry, I am still very frustrated. But...GOOD news is that I contacted her new primary, and talked to him over the phone. He has agreed to work with us and seemed to know quite a bit about POTS and the different medications. My daughter just switched over to him a couple months ago from pediatrics, but hasn't actually seen him yet. I can tell already that I REALLY like this guy and I know he will be much easier to get in to see and communicate with! What is the worst that could happen? We try some different things, and they don't work? I am willing to spend the time and $$ and take the chance.

Okay, so I am extremely frustrated. My daughter is not getting better, in fact, she is getting worse. I was just told by her dr. that she should just stick with the metoprolol, that drugs are just a crutch and she should eventually get better over time. I am so disappointed. Yes, I realize they may be a "crutch", but doesn't a crutch help you get by until you ARE better???? I could just scream. She is on the "list" to see Dr. Grubb, but I called yesterday and they said it could be a couple months yet. Anyone know a dr. that is willing to try different medications that is taking patients? We are in MN, but willing to travel. Thank you!

When you call, who are you talking to, the appointment people? I would keep calling and maybe even ask to talk to the dr.'s secretary. Also, I would ask about being a "checker" if you are desperate and have some time to kill. What that means is that you go to the floor and wait for either an opening/cancellation or to be "worked in". It can take a few days, but if you are there and willing to wait, someone will see you. They can't guarantee how long it will take, but it may be worth it. I know other areas take "checkers", I would assume they would also. Something to look into. My mother-in-law did this a few years back in ophthalmology and was there registered and seen by 11 am! She was told there were no appointments also. Have you tried to get an appointment with Dr. Grubb? I know that is a long wait as well (as my daughter is also on that list), but if you are on a wait list, maybe being on two will get you in to see someone new faster. Good luck!

I sent you a message about who we see at Mayo.

Thanks for your responses. I really think she should be checked for this if nothing more than to have an answer to all her aches and pains--to be validated. She once said she didn't want to go back to the dr. because they never found anything wrong and there was nothing they could do to help her. It was very sad as a mother to hear that your child feels they have to just suffer and that there is no help for them. And, I know she is SO tired of all the dr. appointments and I hate to haul her to another specialist--especially if they don't find anything. I know we should, it just gets SO frustrating--kind of feel like you are crying wolf if you know what I mean!! I also feel like a paranoid parent sometimes, but I need to get over that. Maybe I should email her POTS dr. and ask what he thinks?? I am sure he would do the referral, and I don't think I even need a referral to get an appointment. Two other things that has me thinking. Tonight she was just sitting on the bed next to me and her hip popped. Her shoulders creek, grind and pop all the time as do her knees. I thought I read that it was a sign of EDS somewhere (joint instability). Also, my mother had mitral valve prolapse and died very unexpectedly at the age of 56. They said the best thing they could figure out was that it was some type of heart thing such as an arrhythmia. That kind of freaks me out with this whole thing too.

I got the numbers back, but haven't talked to the dr. Both tests were in the normal range of 70-750. Hers was 506 when lying and 306 after standing. This doesn't make sense to me. Or, could it indicate something else? Some other reaction to standing? Could the lab have messed up and got the two results mixed? Probably no big deal, but it seems a bit odd to me.

I have seen this mentioned quite a bit on this forum. I have been asked by doctors if my daughter is really flexible, but that is about as far as it has gone. She isn't generally flexible. However, after reading about EDS, it mentions dislocation or sublaxation of joints such as knees. She has had that a LOT. Also her ankles. She had her first really bad ankle sprain when she was in kindergarden. Also, she has a LOT of muscle/ligament aches and pains and some arthritis. I have even told her pediatrician I really felt she had some type of connective tissue disorder as it isn't normal for a kid that age to hurt all the time, but that is as far as it went. She agreed that there was likely "something", but until the symptmos manifested in a manner that could be diagnosed, she didn't know what to do the help. Also she has had a lot of bruising for no apparent reason--especially on her legs. She was checked for some bleeding disorders, but not by a hemotologist. I don't think she has any serious bleeding disorder, but she does bruise easily. One time we counted over 30 bruises on her legs and she had no idea why. I guess what I am wondering is what benefit is it to be diagnosed? Is there treatment? Is a skin biopsy required? If so, where do they do that? Who diagnoses this disorder? It seems to me that it would explain part of POTS in that the blood vessels are stretchy and don't constrict properly. Any information would be appreciated!