rmlyonsfamily

For my daughter - 1) Dizziness and feeling faint like she could pass out at any time 2) Extreme fatigue 3) Pounding headache with pain up the back of the neck and head 4) Fingers feel numb and tingly 5) Nausea anytime she eats or drinks

We have been at Duke since early this morning. She is home tonight with us and we are all exhausted. But - we got things accomplished that needed accomplished! We got there and her BP and pulse were better, but still very low. The cardiologist came in and was quite concerned because of how symptomatic she has been over recent days. He was honest and said that the autonomic studies were booked clear out through September, but he was going to see what he could do because of the severity of K's situation right now. Within an hour he was back and had it scheduled for NEXT Tuesday!! July 5th!!!! He had an RN come and explain everything that will happen step by step. It is the nurse who will be with her all day next Tuesday - so that was very helpful and made K very at ease. I was quite surprised at how involved the day will be! Check in is at 9am. They will start placing her IVs and an aterial line at 10am. After that they give her an hour to "settle down" and be relaxed and at "baseline". They will then begin the tilt table testing without any medication to see her initial body's response. Then they will give her various medications (mentioned isoproterenol, atropene, and propanaolol)to challenge her body and measure it's response through the arterial line (BP and intrinsic heartrate) and transcranial doppler. After they get what they need she will be given an IV of simple fluids to flush her and rehydrate her. From here they will talk with my husband and I about their findings and begin a treatment plan right then and there. IF they don't see evidence of dysautonomia she will be admitted for further EP/heart workups. She has to come off her Florinef immediately and her Midodrine on Saturday so that they don't affect the studies. As far as my "how low is too low" question - he answered that as well. Basically he said if she is responsive we are safe. If she is symptomatic, lethargic, and laying vertically for a period of time doesn't help, head to the ER. He said not to worry about the numbers too much. Anyhow - that's a synopsis of how today went. I feel more comfortable with it all and really just want next Tuesday to come so that we can move forward with whatever it is she needs!

We have been out of town since Thursday night for a death in the family and I had to take K with me. Things have not gone smoothly with her and I hate that we had to be traveling, it only made it worse. Her BP has remained dangerously low (low 70's over low 40's) and she has been in Bradycardia since last Wednesday again. I spoke to the nurse Wednesday, Thursday, and again on Friday. On Thursday we were told "she is in no danger... just monitor and write everything down". Then on Friday when I called because her heartrate was 38 they got concerned (finally) and wanted her taken to the ER... but, we were 8 hours away! So, they scheduled an appointment for first thing tomorrow, but said that if the symptoms didn't improve to take her in to the closest ER. Well... her symptoms haven't improved, but I didn't want to really take to an ER in a small town 50 bed hospital. They just aren't equipped to handle much. So - we watched her like a hawk! Then, on the way home today, she took her afternoon dose of Midodrine around 1pm when we stopped at Wendy's. By 2:30pm she was complaining that she felt "weird", dizzy, and felt like she had a big air bubble in her chest. Her BP was WAY up for her to 124/76, heartrate was 38 again, 02 95%, and sugar 76. We had 2 more hours to drive so I kept trying to get her to drink fluids to which she said she felt like she'd throw it up. We are home now and I have left a message for the cardiologist on call at Duke, but nothing back as of yet. She's at 111/70, but still in a very low brady at 38-42 for a heartrate. I'm not completely convinced that Dysautonomia is our answer... Reading other forum posts, most of them talk about higher blood pressures and tachycardia which is not K's case at all. We are completely the opposite. We were with my step-mom all weekend who is a RN and said the same thing... she's concerned they are missing something. For now, since she's "stable", we are trying to stay here at home until we hear back from the doctor. Again, don't want to take her to the ER here because we had a terrible experience. She sees her cardiologist at Duke in the morning (2 hours away), so we are trying to just hold off on going. Just feeling very frustrated with it all. If there are so many people suffering like this, why can't they come up with a treatment plan that works?!? Ughhh!

She and I have been out of town for a funeral the last few days - so I have been with her 100% of the time and watching everything she eats... I have no idea how she is surviving!! Friday: 2 granola bars 1/8 bottle of diet pepsi 1/8 bottle of water 1/4 plate of chicken dumplings from Cracker Barrel The crust off the biscuit 1 chicken strip later for inner the skin off a 2nd chicken strip 1/4 bottle of water and 1/2 of a snack size blizzard Saturday: 1/4 cup grapes 2 pieces of pineapple Crust off 2 biscuits 1/8 glass of water about a cup of a lettuce salad with carrots in it 1/3 cup of berries Grilled cheese sandwich (that I forced her to eat) 1/8 glass of water Sunday: Granola bar 1/8 bottle of water 4 chicken nuggets at Wendy's (yeahhh!!!!) 1/8 bottle of water Reece cup 1/8 bottle of diet pepsi About 1/4 cup of shredded chicken About 1/2 cup of Augratin potatoes THAT'S IT! I've been letting her eat in small amounts throughout the day, but when I see it all written down it's hardly anything. We have an emergency cardiology appt tomorrow (I'll post another thread for that) and I absolutely plan on asking about this.

Also - as far as Toledo goes... we have family up there. Would it be more beneficial to have her seen up there to get things rolling?

I'm already experiencing some of what you are saying. We were told June 9th that they'd be scheduling her for the testing and it's yet to be done. I've called a few times and either I don't get a call back, or the person I need to talk to is off. I'm kind of a squeaky wheel though and won't let it go. I'm actually going to be calling them today again. I'm also there on Monday with her for a Rheumatology appointment and plan on asking while I'm there if I don't get anything today. Do you live in North Carolina? If so, can I ask where you take your son?

These questions keep popping in my head as I watch K go through this struggle... so please bear with me! Is it normal to completely lose the desire to eat with Dysautonomia? Since her collapse on April 12th, she has gone from 118 pounds to 103 pounds and really doesn't want to eat. I feel like it's a daily struggle making her put something in her. She says she is hungry, then after 2 or 3 bites she feels full and if she keeps trying to eat she gets nauseous.

Sorry - I meant to say 10mg of Midodrine 3x a day.

K's on .3mg of Florinef and 5mg of Midodrine 3x daily. This week she's really struggling with her BP being as low as 73/41 and not higher than 84/48 at any given point. As of today she's back in bradycardia... heart rate has not been over 45 since yesterday afternoon. She's quite fatigued and very weak, but is doing her best to manage. I called the doctor's office today, but didn't get a return phone call. How low is too low on BP and heart rate before you throw in the towel and head to the ER? What do you typically use as a standard to say enough is enough? I refuse to take her to our local hospital after what we went through last time. So, we'd have to take her 2 hours away to Duke where her doctors are.

Toledo vs Duke! Wow that's quite a distance. I'm actually from the Defiance Ohio area, but moved to North Carolina in 2006. We are new to Duke Medical Center. We've seen Dr. Camitta, but she's now being followed by Dr. Kanter and Dr. Carboni who really specialize in Dysautonomia (or so we're told). Do you know what their "Autonomic Studies" consist of? They haven't given us much detail other than it will be an all day process. K is having more low blood pressures and is in bradycardia AGAIN. Her heart rate hasn't been over 45 all day long... leaving her very sluggish. I called them today to see if they wanted to see her, but didn't get a return phone call.

Just curious if anyone else goes to Duke Medical Center for treatment of Dysautonomia or if anyone else went there for evaluation?

Thank you for that link sue1234! I'm gonna have to do some research to figure out what some of it means, but it is helpful. We upped her Midodrine as of yesterday to 10mg, so today has been a hair better. We see Rheumatology Monday, as well as Cardiology again.

@CHRISTYD - No, she isn't on any sort of antidepressant, only the Florinef and Midodrine. K will be 17 July 26th - is 5 foot 4 and 104 pounds (she was 118 on April 12th when this got ugly). The cardiologist we saw at Duke was surprised at the amount of Florinef that the initial cardiologist had her on as well, but said he didn't want to change it until he at least stabilized her symptoms for fear of it making things worse than they already are. @Sue12345 - No, they didn't do the ACTH stimulation, only drew labs and sent some sensitivity testing off to another lab in California. I have asked about the ACTH and repeating some of these, but was told it isn't necessary at this time. The Endocrinologist believes that all things are pointing to the Dysautonomia with a possible Rheumatoid involvement due to family history and her elevated ANA. The results of her labs are as follows (the acceptable range is in the parenthesis): Sodium - 135 (135-145) Potassium - 4.0 (3.8-5.2) Chloride - 99 (98-108) Carbon Dioxide - 28 (21-30) Creatinine - 0.8 (0.3-1.1) Calcium - 9.0 (8.6-10.6) Glucose - 71 (70-140) Renin Acrivity, Plasma - 0.6 (1.2-2.4) Aldosterone - <4.0 (<=21) ACTH (drawn at 11am) - 20 (15-66) Cortisol (drawn at 11am) - 7.5 (5.0-25)

My daughter, K, will be 17 on July 26th. Just over a year ago, she passed out for the first time. Afterwards, in the hospital, she was found to be in bradycardia with a very low blood pressure as well. She was sent to a neurologist who told us she was having "complicated migraines" and a cardiologist who who ordered a basic tilt table with some labs. The tilt table test was negative and he left it at that, never did anything else for her. Since this initial "episode" she has had 4 more, each time a bit worse than the previous. We have been told everything from she has mono, to migraines, to she's just oversensitive and attention seeking (yeah... that was my favorite!). With each episode, her bradycardia that follows has also increased in time from a few days to a few weeks and she has struggled to get her energy back after each. On April 12th the "biggie" happened. She collapsed at school and was unconscious for 25 minutes. When the paramedics arrived she began seizing and she was in bradycardia again (shocker) as well as had an abnormal sinus arythmia. Blood sugars were fine, BP was "dangerously low", oxygen was 82%. Got her to the hospital and they did nothing for her and sent her home a few hours later. The next day, our family doctor ordered MRIs and a bunch of labwork - all of which has came back "ok". Her labwork is always within normal limits, but on the very low end of what is considered normal. She did have an elevated ANA indicating. From there we were sent to Endocrinology for possible Adrenal Insufficiency - the doctor did a huge lab profile, but again, all came back "normal". Her Aldosterone was only 4 and her Renin Plasma was only 0.6, but they weren't too concerned. Her ACTH was 20 and her Cortisol was 7.5 (11am). So, Endo discharged her as well. We did go back to Cardiology who put her on .2 mg of Florinef 1x day and then added 5mg of Midodrine 3xday two weeks later and upped the Florinef to .3mg daily. Even on that, her vitals are staying very low and we haven't seen improvement. I promised K that I would fight like **** to get her answers and get her help and I called our doctor requesting to have her case moved to Duke Medical Center. I've watched my daughter go from an energetic, fun, life loving girl to being completely exhausted, suffering from bad headaches, and having to be pulled out of school by mid May. On June 10th, we finally went to Duke Medical Center where we saw a cardiologist who believes without a doubt she has a form of Dysautonomia, and he said straight to my husband and I that he hasn't seen a case where the amount of meds she's on hasn't helped, nor has he seen where it's affected someone's life this drastically. He is scheduling her for a series of "Automonic Studies" to include yet another tilt table with a medication that will be injected IV. While we were there they did a CPX test - she didn't do horrible on it, but he was very concerned that her blood pressure didn't go up at all... and that was ON .3 of Florinef and 5mg of Midodrine. She's also now scheduled to see a Rheumatologist next Monday at Duke. So here are my questions... We have seen improvement when she went on the 5mg of Midodrine for about 3-5 days, then she started to crash again. Called Duke last week and they upped her to 7.5mg of Midodrine. Again, we saw improvement for 3-5 days and the last few days she's crashing. Today they upped her to 10mg (the max they can give her). My concern is it's gonna work for a few days and then crash again. Anyone else experience this? What happens next since it's the max they can give her, and the Florinef is the max she can have as well. When they do the autonomic studies, is that really going to change anything they are currently doing medication wise? I know we have to be there super early in the morning for it and we were told to expect to be there all day because they'll be injecting her with meds to "force" her to crash. This scares me to death!!! How is she going to be when we leave there? Do I need to push for her to stay overnight? How long until she feels good again? All she wants (and all we want for her) is to feel better again and to be able to have fun without being so exhausted. Anyone else have Rheumatology involved? How do they play a part in all this? What else has worked for any of you other than medications? What else can they do, if anything? ANY thoughts, suggestions, etc. are greatly appreciated! As parents, my husband and I feel COMPLETELY helpless!! If you've read this far... Thank you!!!