LisaMarie

I'm so sorry for what you had to deal with, and, yes, I have seen a lot that follows that pattern. Our high level research and therapy tech in the U.S. is amazing, the things we can do are astonishing. But the medical professionals who have to make all of it apply to actual patients sometimes aren't up to the job. When you get a good doctor, it's fantastic, but most are "C" students, just average people who are maybe in above their heads. The problem is that they can't just openly recognize that and work to get better, they so often seem to cover for not understanding a situation by blaming the patient. There's a great book called Black Box Thinking that explains how the more important it is that a person not make a mistake the more likely it is that they won't be able to recognize it when they are in the middle of making one. It's a real system problem. Thank you for bringing up your concerns, we definitely are on the lookout for what you are talking about but it's good to have a reminder.

Thank you for this information, I just checked back on the forum and saw replies, I didn't realize more people had come on here to help, sorry for the delay. I will keep that in mind, then, about the Atavan. Also good to hear you don't have to increase the dose periodically and can take a break during certain situations. If it comes up I won't reject it, then. Also interesting to hear about how things work with autism and ADHD. Great info here, and I agree that physiology varies so much, I see that all the time in all my kids. Thanks a ton!

Thanks for your thoughts, very considerate of you!

Thank you very much for your information, I just checked back, didn't realize there were more replies. I agree about the ADHD diagnosis, and I also know that it's a really imperfect science and Autism spectrum, learning disabilities, processing disorders, or just the brain fog from no sleep and hypoxia can look like ADHD. We were pretty careful about getting the diagnosis but also pretty cautious now about believing it on face value. We do know there is something up in addition to the POTS, although it might be connected, and it's so hard to tease it all out. We dropped the Clonidine like a hot rock because it made her so sick, we figured out it draws potassium so she had some bananas and felt massively better, but we'll not go near that again. She is now using a very low dose of Doxepin, it is not addressing her focus issues but it is allowing her to sleep for the first time -- well, in living memory! I am hoping when we start school again this week the sleep will help her focus. We've been checking her bp as per doctor's request, there have been some mornings where her pulse rate is 54 lying down and then 157 standing up. She can't stand for long enough on those days to test it a few minutes later. Frankly, I don't know that this didn't happen before the Doxepin, though, as we didn't directly test, just went off how she felt and acted. I think you are absolutely right about the adrenaline, I think it's hard for us to untangle it all because she's never really known things to be any different so we don't have a baseline to compare. We do see a cardiologist soon. I also think it's obviously very stressful to have a chronic medical condition and that has to be factored in, also. Her sister has Type 1 diabetes so there is a lot of daily reasonable stress from all that. I really appreciate you giving me your opinion. Very helpful, and if you have any opinion on the above that will also be appreciated.

No, I didn't know that was an option, thanks!

Sounds right -- thanks!

Sorry, he said it was a P450? Something about a genetic test to see how she metabolized medication. Never heard of it.

Oops, a P450.

It was a pretty bad experience, I'm grateful we had a pediatric GI doctor that was also surprised and tapered her off it. That's probably why we haven't tried to see specialists again, the Gatorade has worked largely for ten years so I didn't want to get back on the merry go round. The current doctor is suggesting low dosage to start, which is good, and has ordered a NP450, so at least he's aware. He suggested we test her BP twice a day before and after starting. From my experience, though, she doesn't have a blood pressure problem, she has a blood pressure regulation problem. Her bp reacts poorly for the situation, so we could see fine numbers all around but still have an issue at 3 a.m. while she's asleep. So I'm not sure that will be a help, but well try it. If you have any suggestions for getting that kind of baseline, or if you have an opinion on the test, I'm all ears. Thanks for all your help.

Hmm, this is not good to hear. When she was 6 a neurologist (before the POTS) diagnosis, put her on a very high dosage of Elavil and it was super bad. If they are similar I'm reluctant to let her even try it. So complicated. Thanks.

That really resonates with her experience, thanks, will look this up.

Wow, grabbing a pen and paper for that, great info, thanks!!

Ashc, Thanks so much, I'll look that one up. We've had a recommendation of doxepin, the doctor says it raises blood pressure but I'm googling that it may lower it on standing, which would be the thing she can't tolerate, obviously. Appreciate your help.

Well, we'll skip that one, then, but still lots of great info. Thanks, and I will!

That's unbelievably helpful, thank you! I think the Wellbutrin/Clonidine combo is this doctor's automatic go-to for ADHD with anxiety, and he just didn't think it would be necessary to adjust for the blood pressure issues. It made her very, very sick at an extremely low dose. In a way it's good to know that is "normal" for the situation. She has not had a tilt table test, and I guess after all this time we should push for it. I Thanks also for the notes about listening to your body and not "powering through", that is good reinforcement for what we've been seeing. Our biggest challenge now is making sure she is in a good place to drive every time she does. I have worried about using Ritalin because stimulants do seem to tank her -- she can't drink caffeine, etc. It's great to know that's a possible option. Will also look up Ativan. Sorry for the long post, your advice is exactly what I was hoping for, some info to help us navigate this. Thank you very much, and have a wonderful night.

Hello, everyone. Have read from DINET over the years, it comes up in searches, but joined the forum today to see if anyone had some advice for me. My daughter is 17, at age 6 we had a cardiologist diagnose here with "POTS-like" dysautonomia. She has been able, all these years, to keep her symptoms controlled with Gatorade daily. She is also active. However, as an older teen she is identifying that she has trouble with focus and anxiety, and has had for several years. We talked to a doctor and he prescribed Wellbutrin for ADHD and anxiety, and Clonidine for her to sleep. He told us the clonidine dosage was very low so it shouldn't affect her blood pressure much, but she's always had a hard time sleeping and a harder time with her bp at night, and it just wrecked her. She fell asleep, but was up ten times a night and then felt horrible, we stopped but she still felt bad. We read that it depletes the body of potassium so she took some and felt drastically better within a few hours. Now she is only on the Wellbutrin, it seems to help with focus and anxiety but she is keyed up all the time and her sleep is out of control, she got three hours last night, maybe five the night before. We have a referral (finally) to a cardiologist, but what we are finding (you won't be surprised) is that doctors know little about this, aren't really interested, don't think it's much of a factor in treating other things, etc. It would be great if anyone here could give an opinion on the interaction of ADHD and dysautonimia, if there are sleep aids that help with the insomnia from this (she can use melatonin but it also reduces bp and causes issues), if Wellbutrin interacts with dysautonomia, etc. We spent many years just "leaving well enough alone" because the Gatorade kept her pain, fuzziness, fatigue mostly under control. Now we are back with the medical system I'm seeing what I saw before, you can just get dragged from one path to another -- this treatment helps, but has side effects you need to take that for, and then you need another thing to treat the side effects from the new thing, and each time you have to convince the doctors that this is an actual physiological thing. Getting the original diagnosis was murder -- two years of begging and then the pediatrician finally did a pulse test and was shocked to see she really did have a problem. I'd really like to go into this new effort informed. Thanks for anything you can help with!!