Sleeping elevated for autonomic dysfunction??

My son was recently diagnosed with autonomic dysfunction after 3 years of being misdiagnosed or told to see a pyschologist(the pyschologist thought it was autonomic dysfunction).  He has had some improvement with his symptoms with fludrocortisone.  He feels his worst when he wakes up.  I've read that people with autonomic dysfunction should sleep elevated.  Has this helped anyone?

[halbashes]

This is mainly helpful to patients experiencing high blood pressure while lying flat, but low blood pressure while standing.  If his symptoms are primarily associated with low blood pressure only, it may not be very helpful.

It's not unusual for mornings to be the most difficult though.  Something that may help is to have a bottle of Gatorade by his bed at night.  That way he will have something to drink before he gets out of bed in the morning.  Also, a stimulant like Ritalin, or another drug called Midodrine can help to raise blood pressure.

If he is experiencing episodes of higher blood pressure, then disregard all of that.  In that case, elevating the head of his bed may be helpful.

What kinds of symptoms is he dealing with?

[CHRISTYDRAKE]

His symptoms vary.  He experiences stomach pain, nausea, dizziness, headaches/migraines, hot spells, heavy head.  His migraines are under control right now, but still has frequent headaches.

He wakes up with stomach aches/pains and nausea frequently.  Since he started fludrocortisone it has not lasted all day, as it has it the past.  

He has not attended school since the first week of February.  He is 14.  I am trying to get this under control before school starts back up in August.

He recently had a growth spurt, 7 inches in 15 months.  I read that in children it can cause the autonomic dysfunction.  I've read that it should correct itself, but I've also read that it won't.  There is some conflicting information out there.

I would just like to return some normalcy to his life.  He used to be very athletic, but has had to give up soccer and can only play baseball 50% of the time.

Thanks for any ideas or input.

[Heiferly]

Do you have a blood pressure cuff at home so that you can track lying, sitting, and standing blood pressure and heart rate for your son?  (If you need tips on how to properly take each of these, let us know--little things like crossing your legs can skew the readings.)  One way to evaluate how things are going, beyond symptoms, is to keep track of these between doctor's appointments; this can be invaluable information for the docs to make med adjustments.  

Many of us take medication specifically to relieve nausea.  You may want to ask your son's doctor about the possibility of anti-nausea medications.  The downside is that many of these medications have the side effect of drowsiness, but sometimes a low dose can be effective without causing drowsiness.  If the stomach pain and nausea are persistent problems, you may want to consider asking for a gastric emptying study to check for gastroparesis which is a common condition in people with autonomic dysfunction.  

If fludrocortisone alone is not working for your son, there are certainly other medications out there.  Often fludrocortisone is taken in combination with a vasoconstrictor such as midodrine or ritalin, as halbashes mentioned.  There are many other medications available depending on the unique characteristics of each case.  Hang in there, stay in close communication with the docs about how treatment is working, and try to have as much concrete/detailed information for them as possible.  

When you say you are reading that it should correct itself, are you referring to the 80% recovery rate cited for youth-onset POTS?  Have your son's docs determined whether his autonomic dysfunction is POTS or not?  I don't know about finding prognosis information with a more generalized diagnosis such as "autonomic dysfunction."  I'll be happy to try to help you sort through the conflicting information you've found if you can give me more information on your son's diagnosis and relevant test results (tilt table test results would likely be most helpful).  

I highly recommend the blood pressure tracker here on MedHelp if you're not already tracking BP and HR.  There should be a link to it in the right hand column on this page under "most popular trackers."  If you have trouble finding it, let us know.

[CHRISTYDRAKE]

I do have a blood pressure cuff.  I will monitor him.  Also, he has tried every over the counter and several prescribed anti nausea medicines.  None helped at all.  

The fludrocortisone seems to be helping, but as I wrote his mornings are still bad.  They are upping his dose of this medicine to see if it helps with the morning symptoms.

When he was diagnosed,  the cardiologist just told me he had autonomic dysfunction.  He wasn't more specific, and he said it should even out within 6 months to a year.  I'm not sure how versed the doctor is on autonomic dysfunction.  He said the stomach pain and nausea weren't symptoms of autonomic dysfunction, so he thought there might be something else wrong as well.  But I've found on several sights that nausea and stomach pain are some of the symptoms.

We have a follow up appt with his neurologist tomorrow, so I'm going to pick his brain on this new diagnosis.  Do most people get treated by a cardiologist or a neurologist for autonomic dysfunction?

[halbashes]

Actually, both Cardiologists and Neurologists can treat Autonomic Dysfunction.  Though you may have better luck finding appropriate treatment at an academic teaching hospital.  These hospitals tend to have more up-to-date information on generalized Autonomic Dysfunction, and other forms of Dysautonomia.

Has he been prescribed Phenergan or Zofran?  These are two of the more common nausea medications that have been helpful for members in our community.

[CHRISTYDRAKE]

He has tried Zofran, no help at all.  He has not tried Phenergan.  I will ask his neurologist about it.

[CHRISTYDRAKE]

About the gastric emptying.  When he was seeing a gastroenterologist, I asked him about gastroparesis and he blew me off.  He said that doesn't usually happen in children.  But I thought the key word was "usually".  I think maybe I should push that again.

[Heiferly]

It sounds as though the GI doc may not be familiar with ANS disorders, as gastroparesis is a frequent complication of ANS dysfunction, and symptoms such as abdominal pain and nausea can be indicative of gastroparesis.  If this doctor does not have knowledge/experience in this area, it may be time to look for another doctor.  

As halbashes said, doctors at major university teaching hospitals generally are more up-to-speed on dysautonomia.  

How high are they raising the dose of the fludrocortisone?  Are they testing his potassium levels before and after the dosage increase to monitor for hypokalemia?  

[halbashes]

Let me add to Heiferly's excellent suggestion by recommending he have all of his electrolyte levels checked, along with a complete CBC.  Potassium in particular does tend to lower with Fludrocortisone treatment though.  Good thinking Heiferly!

Body temperature dysregulation, and heat intolerance are common in Autonomic Dysfunction as well.  I noticed your mention of "hot spells".  These might be helped by cold drinks, and freeze pops.  Did your doctor mention sports drinks like Gatorade?  These are usually recommended to keep hydrated.  (It's absolutely vital that patients with Autonomic Dysfunction stay hydrated.)  Also, you may want to keep him in a cool environment, (with air conditioning, fans, etc.), to help keep him comfortable.

[CHRISTYDRAKE]

The doctor wants to do a blood test in 2 weeks.  My son has been on the Fludrocortisone for 2 1/2 weeks now.  The first week was .2 mg, then he reduced to .1 mg.  After two weeks, I called and let the doctor know he was still sick in the mornings, so they uped his dose back to .2 mg to see if this would help.  

My son spends alot of time on his computer, which is right next to the AC vent and he has a fan blowing on him.  But when he does leave his room, he complains the rest of the house it too hot (which it isn't).  When he is in the car, he makes me blast the AC.  So yeah, he seems lately to be constantly hot.

I will get him some gatorade.  He has been drinking a lot of cool aid and crystal light lemonade.  He doesn't care for water without any flavoring.

Thanks!

[CHRISTYDRAKE]

At the time of of GI appointments, he hadn't been diagnosed with Autonomic Dysfunction yet.  At that point, he was diagnosed with abdominal migraines(which I have found on a list of symptoms for Autonomic Dysfunction).  The GI doctor couldn't find anything wrong through the tests he did do, so he sent us to the psychologist-thinking it was anxiety.  Without the psychologist, he would still be sick in bed all day being told by doctors that it was mental.  She (pyschologist) was awesome! Got us headed in the right direction, where the medical doctors had failed.

Anyway, I believe, I will call the GI back and give him the new diagnosis and request the gastric emptying test.
Thanks.

[Mom_ZAR]

Hi,
My son, who is now 15 has had a POTS diagnosis for 2l years and was sick for 2 years before we got that diagnosis. Interestingly, the cardio doc that I brought my son to for the Tilt Table test commented that we had managed to get to him a year earlier than most families!  Food for thought if your son has been all the way out of school since Feb:  Start working with the school system to establish a 1/2 day at school (2nd half) plus homebound tutors for whatever subjects don't fit into the 1/2 day at school.  It will take time to convince the school system to do this. It took us several years before they saw the light. He basically missed all but a few weeks at the start of each school year during middle school.  He'd go for 3-4 weeks and collapse, and then be on complete homebound the rest of the year trying to recover.  This year was a miracle with the 1/2 day schedule for 9th.  He missed ~20 days in the fall, but only 6 in the spring.  He feels fantastic to have made it through the year and was able to have social interactions with peers, etc.  He had Math, Bio, Gym (modified), Lunch, and an Elective (required Health course in Fall; Art class in spring) at school and English and History with Homebound Tutors (1 hr/week/course).  This schedule has also allowed him to be as active as he can without going too far over his limit.  Interestingly, as the year went on, he got up earlier and earlier and has been increasingly functional in the am (although not "normal" yet, and he still has bad days if he does too much - no "bounceback"). He takes fludrocortisone, buspar for anxiety, and strattera for ADD.  We're going to add a disposable course (so it can be ditched if it's too much) and lengthen his school schedule by one period next year.  Personally, I think the same chemistry problem that is causing the POTS is causing the generalized non-specific anxiety.  I have to say that I've been very disappointed with the neurologists (2) that we've seen.  They admitted that they don't really understand the neurochemical basis for POTS and didn't have any useful recommendations besides learn to live with a modified life style.  On the other hand, the cardiologist doesn't understand the neurochemical basis either, but at least treats the cardio symptoms.  

[Heiferly]

You are correct that anxiety can be a symptom of POTS.  The anxiety is physiological rather than mental, and caused by dysfunction of the sympathetic nervous system (responsible for the "fight or flight" response) and what can in some patients be quite dramatically high catecholamine (e.g. norepinephrine) levels.  

As for your neurologists or cardiologists understanding the neurochemical basis for POTS, I don't believe research to date supports a neurochemical explanation of POTS.  There are several proposed theories regarding POTS, and I will do my best to list the most prominent ones off the top of my head.  Some of this is piecemeal, in that it does not attempt to explain POTS as a whole, but some symptom or mechanism within the syndrome.  None of this is written in stone by any means yet, I just thought you might be interested in some of the directions the research is pointing since you were asking about the actual *basis* for POTS, which unfortunately is only bouncing around at the theoretical level at this point.

Norepinephrine-transporter deficiency:  "Genetic or acquired deficits in norepinephrine inactivation may underlie hyperadrenergic states that lead to orthostatic intolerance."

source:  http://content.nejm.org/cgi/content/full/342/8/541
see also:  http://circ.ahajournals.org/cgi/content/full/105/3/347

Subcategorizing by (abnormal) patterns of regional (rather than systemic) circulation:
"In summary, our data to date suggest that POTS depends on thoracic hypovolemia, which can occur by diverse mechanisms. Regional sequestration of blood occurs in normal-flow and high-flow variants, whereas a degree of absolute hypovolemia and abnormal local blood flow regulation occurs in the low-flow variant. Although molecular mechanisms remain forthcoming, we hope the data presented may help focus the effort."

source:  http://ajpheart.physiology.org/cgi/content/full/287/3/H1319?ijkey=e76ab96b63c08162557476fef088221d978cbcad

Nitric oxide:  "The data suggest that flow-dependent nitric oxide release is reduced in low-flow POTS. This may account for local flow regulation abnormalities."

source:  http://circ.ahajournals.org/cgi/content/full/112/17/2611

Cerebral hypoperfusion:  "Patients with the postural orthostatic tachycardia syndrome (POTS) have symptoms of orthostatic intolerance despite having a normal orthostatic blood pressure (BP), which suggests some impairment of cerebrovascular regulation.  ... paradoxical vasoconstriction occurs in POTS because of an increased depth or respiration, resulting in hypocapnic cerebrovascular constriction, and impaired autoregulation."

source:  http://www.amjmedsci.com/pt/re/ajms/abstract.00000441-199902000-00007.htm;jsessionid=KDbSRc4LW4cnLLBycLvC4rVznQ4rrd1LcGtl3yhpDhbkw93YPJQJ!-847254088!181195628!8091!-1

see also:  http://www3.interscience.wiley.com/journal/120754484/abstract?CRETRY=1&SRETRY=0

Sympathetic denervation:  "The neuropathic postural tachycardia syndrome results from partial sympathetic denervation, especially in the legs."

source:  http://content.nejm.org/cgi/content/full/343/14/1008


I'm sorry, this is incomplete, but I hope it gives you a starting point.  Unfortunately, I don't think there is one POTS, but rather POTS is descriptive of an endpoint condition that different patients reach through different pathways.  Researchers are trying to account for our varying symptoms and presentations, but some of the research has been conflicting in and of itself--the transcranial doppler studies regarding cerebral perfusion in particular have given extremely inconsistent results from one facility to another.

Very few doctors specialize in dysautonomia, so it's not terribly surprising that the specialists you've seen may not have known everything there is to know about POTS.  Even so, it sounds like they are knowledgeable about it, as your son is on a pretty typical treatment for it.  

In a general sense, what we are fairly confident of is that thoracic hypovolemia (low blood volume of the chest cavity, where the heart is) plays a crucial role in POTS.  So much of the treatment we have is focused on increasing the volume of blood that is available to the heart, by expanding overall blood volume (fludrocortisone, vasoconstrictors, increased salt and water intake) or by decreasing displacement of blood volume away from the heart (compression garments such as abdominal binders and stockings, eating smaller more frequent meals).  Fortunately, cases of young persons like your son getting POTS are the ones reported to have the best prognosis for recovery.  

If you post a question with specific symptoms he is struggling with, we may be able to give you additional tips or suggest things to discuss with his doctor.  

[halbashes]

I would definitely consider Mom_ZAR's recommendations on seeking help through the school system.  Many school-aged patients with Dysautonomia will require alternatives to traditional education.  Without part days, and home bound options I would not have been able to graduate.

[CHRISTYDRAKE]

Thanks for the info.  My son did have homebound schooling the last couple of months of school, 1 hour for every day he missed.  In the fall he'll be a freshman and I've asked his counselor to schedule his important classes in the afternoon.

He seems to have had improvement on the Fludrocortisone, but still has bad days like today.  He was unable to get out of bed until 3:30.  

Hopefully, the school will help with the classes he might not be able to attend in the mornings.  His counselor mentioned on-line classes, which would be great since he is very computer savy.

I'd still like him to get back to school to get back a social life.  He used to have tons of friends, and he's down to about 2.  Boys don't have that maternal instinct to check on sick friends like girls do.

His neurologist is going to monitor his progress and send us to Vanderbilt in TN if necessary.


Thanks for your info.

[Heiferly]

Good luck with his school schedule!  Online classes sound like a nice option as well.  

Others on this forum have been turned away from Vanderbillt because they do not see children there, so you may want to look into that if the neurologist decides to make a referral.  I believe Mayo and Cleveland Clinic see children.  There are also a couple of options in NY-- NYU Langone Dysautonomia Center and New York Medical College Center for Pediatric Hypotension.

[LivingInHope]

He grew 7 inches in 15 months?  Did they test his growth hormone level?  From what I could see on a website I checked, 7 inches sounds like more than normal to me.