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New Here And New To Dysautonomia


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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!!!

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That .3 mg of florinef seems high. The highest they would go on my son (who is 6'2"/ 195 lbs) is .2 mg. Have they talked about adding an anti-depressant? It is not prescribed for depression/anxiety, but as off-label to help the dysautonomia symptoms.

My son has only gone to school for 6 weeks in the last 2.5 years. He did have a 6 week 'remission' while on Doxepin, but then he too crashed again. He is currently on Cymbalta, which helps, but not enough to get him back in school. It is a long process of trial and error with medications/doses.

My son is 16, and symptoms started when he was in the 5th grade and just gradually increased until they were daily and debilitating.

Finding the right doctor is half the battle. We, too, went through the 'attention or anxiety or just not wanting to go to school' label. Just keep researching and reading and fighting for your daughter.

Water jogging seems to be a little helpful as well, exercise wise.

Christy

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Welcome KaybersMOM;

Although we both probably wish it was under different circumstances, Welcome :rolleyes: There are a lot of great, caring people on this site with loads of good ideas. We have all been there on some level or another.... My advice, Water, gatorade and especially coconut water if your daughter can stand it. Salt loading...for me just adding a lot of salt to current diet has helped, but a lot of folks on here take salt tablets. Compression hose for the legs, stomach area....I know they aren't gorgeous but they work. For me even tight panty hose are enough ;o) I don't know if your daughter is constantly cold or hot but a shower or bath might help, either cold or hot...Just make sure you or your husband is right there in case there is a problem. A sitting stool in the shower is good idea, but for me the 1st few weeks of my really bad symptoms, I had a bathing suit or something on and someone was always present until I knew how I would react.

Always check with your Doctor but at least these are some items that might help a bit. It is a long, slow process of figuring out what works for your daughter, but hopefully with the Docs help she will see some improvement soon ;o)

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Welcome! I have two questions. Did they do an ACTH stimulation test? If so, what did the baseline cortisol and ACTH do upon stimulation?

And, secondly, when you say her labs are normal, but in the lowest "normal" range, what labs were low-normal?

I hope the testing coming up gives some answers and help!

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I'm feeling kind of crummy right now, but wanted to jump in with a few quick thoughts. I am so sorry for what you, your daughter and family are going through. I take 10 mg midodrine every four hours (5 mg in the evening) and it didn't really help me until I got to that dose - but I also have to take MCAD meds at the same time to address the reason my bp keeps falling. I didn't do well on Florinef - it seemed to cause an increase in my mast cell related symptoms. Now I take a 1 g salt capsule with every meal. I am far from "fixed" but doing much better than before.

Sorry for the short reply - I wish I could fix her and all the kids going through this. It is NOT attention seeking behaviour (as you know) and when kids get the idea that this will even be suggested they start hiding their symptoms. Who can blame them. Keep fighting and we'll help any way we can.

P.S. I just wanted to add that I also had the testing where they injected meds to see how I responded (and made me crash). It was pretty unpleasant and I couldn't even walk afterwards for a while, but they also gave me IV saline which seemed to help me bounce back to my normal crummy, and it didn't set me back. I was ok not staying overnight, but definitely needed someone there to wheel me to the car and help me in afterwards.

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@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)

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I found this old thread of people here talking about their low aldosterone/low renin. It seems kind of "normal" here for some of us POTS people, but don't know why:

The glucose is ALMOST considered low, along with the cortisol, ACTH, sodium. You are right, alot of things sitting on the "verge" of being low. It kind of resembles a panel for adrenal insufficiency--ALMOST. But, with everything sitting soooo close to low, it would be nice if they would give her the ACTH stimulation test to make sure those adrenals respond appropriately.

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I'm so sorry to hear about your daughter! I have a 15 yr. old daughter who has had POTS for the past 4 years. We also heard from several doctors that her symptoms were something they hadn't seen before. I lost count of the amount of drugs we tried for her daily dizziness. We never did find something that helped it. The dizziness just gradually got better over the years. Other meds did help the headaches, insomnia, and tachycardia.

I can totally relate when you said that she went from being an energetic girl to a sick one. Liz woke up on the morning of March 13th, 2007 complaining of a headache, dizziness, body aches, and fever. The fever and body aches went away and the rest stayed along with many other symptoms. It's been a difficult illness to say the least and I'm not going to sugar coat it, it's not an illness you get over in a few months.

I have just a few things to add to what the others have recommended. If your daughter does have some form of dysautonomia, she's going to need help from the school. Thankfully, our school was awesome and due to Liz being so debilitated, we put her in special education. Other parents on here have gone the 504 plan. Your daughter is going to need help and understanding from her school to get through this. Also, Dr. Grubb (one of my daughter's doctors) told us that with teenage bodies, a medication may work for awhile and then stop working or it may work when tried at a later date. Time of the year may have your daughter feeling better. Summer is usually the best and then fall starts the downward trend with winter being the worst and spring seeing improvement again.

These are just a few things I can think of right now but there are many other parts to this illness. Very important is finding a doctor who really knows about autonomic issues and dysautonomia. It took us awhile to find the right doctor and I was on the computer full time when Liz first became sick, but it was well worth it.

I hope some of this helps and I'll be praying for your entire family. My heart goes out to you,

Brenda

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