Dysautonomia - diet

My daughter has been diagnosed with dysautonomia.  This has been going on for 2 1/2 years.  We found a wonderful doctor but, the medicine is not working or she has gotten worst.  She is a senior in highschool.  Very active and does not complain at all.  But, she does not feel well and what should she eat?  We need help!!!  She drinks Tigeraid atleast 7 daily and water all the time.  But, she is still fainting and shaky and tired all the time.  It is very scarey.  The problem is we have no clue what to eat.  She does not drink caffenine or candy or sugar stuff.  I wish I could find a doctor that could help with all the problems.  

[Lynn63]

My daughter is also a senior in high school. She was finally diagnosed with Postural Orthostatic Tachycardia Syndrome last February.  She has been seeing a Cardiologist (he and another Cardiologist diagnosed her with the tilt table test).  The medications we have tried are not helping her either.  She has tried high sodium diet with lots of water as well as several medications.  She has gotten to the point that she can't even go to school.  She is on home bound where a teacher comes by twice a week to drop off and pick up school work.
It's so frustrating....more so because this is their Senior year and they shouldn't have to be worried about this when they have so much they should be doing.
Which type of dysautonomia was she diagnosed with?  Is she going to a Cardiologist or Neurologist?
The reason I ask is because I was told that a Neurologist is better for Hyperadrenergic POTS which is the type of POTS we now think my daughter has.  We plan to see a Neuro soon.
Maybe if you could tell us which type of dysautonomia she was diagnosed with someone can help you with diet suggestions.

Lynn:)

[Maggie1833]

Lyn,
We went to a Neurologist at Children Hosp. and did the 48 hour test on her brain.  Nothing showed up.  Finally we went to our second Cardiologist and did a tilt test next week and change our medicine and diagnosed her with dysautonomia.  She drinks alot of water and tigersaids ( like gatorade )  because  it has more of the electrolights ( Misspelled).. She drink atleast 5 to 8 a day.  She always made straight A until she started getting sick that is what scares me for her.  Her brain goes into a fog and she does not test well.  She is suppose to go to college.  

Her diet it a good protein breakfast
sandwich for lunch with bananas and chip ( not to many)
Dinner - high protien and fruit
If she eats alot of carb's she get sick and faints.  Her color drop out of her face and is so pale.  The important thing is that she drinks alot of water beverages and no caffenine
I am sorry about your daughter I wish we could find a magic pill to help.

[halbashes]

Has she ever had her blood sugar tested?  I used to drink a lot of Gatorade (for the electrolytes), but my body would overreact to the sugar in those drinks. An hour or so later my blood sugar would be dramatically low.  There is a newer sports drink available called Powerade Zero that doesn't contain sugar.  I wish I could be of more help.

[Heiferly]

If the fainting seems to be correlated strongly with eating carbohydrates, I would strongly recommend seeing an endocrinologist and having her tested for postprandial/reactive hypoglycemia.  Syncope following high-sugar (carb) meals is a red flag for this and controlling the reactive hypoglycemia could really improve your daughter's dysautonomia if that is one of her main triggers.  A good endocrinologist should be able to provide guidance on this.  Good luck!  

[redsox123]

I agree. It sounds like POTS. I suffer from dysautonmia and POTS. Is your daughter on beta blockers for her autonomic disorder- they help to regulate heart rate. The trouble with them (and with the autonomic disorder in general is that it causes your heartrate  to go out of whack). If her blood pressure is going low or her heart rate is slowing, it will add to her fatigue. Unfortunately, I am all to familiar with it. Also, I used to be incredibly active. POTS and the autonomic disorder can cause her to pass out from level changes (for example-if she runs track and takes a starting position and then jumps up to run or if she is on cheerleading and has to go from standing to kneeling). The blood doesn't travel to the brain quick enough. My doctors have all but told me not to exercise, particularly cardio. They especially caution not to do it unless someone is around. Anyway, I hope it helps. You may want to check out my profile too:)

[princess4969]

Hi there I have recently been thought to have this as well and I had to change things on my own 9 years in the making as noone has been able to find out what is wrong til recently, a big I mean big lifestyle change needs to happen, I cannot eat gluten, alot if any carbs, no refined sugar and not alot of cane sugar either, not much dairy, no nuts, no corn syrups, no eggs, no processed foods, nitrates, or caffeine.  Whole foods (veggies, steamed etc..) lean meats minimally processed meats, light on the red meat and organic and natural dressings and sauces depending on what is in them is what I have to live on and I am only 34 with 3 children.  I had to start exercising everyday no ifs and or butts, a light walk even or I am ill and weak, it is hard and requires alot but it helps, also people with this have an increased effect when taking meds, be careful with them even if the doctor gives them to you, I take childrens tylenol because adult strength over affects me, I know it is tough I battle and struggle to get answers everyday and I try new changes and learn alot, I feel for your daughter and you,  please keep me updated on what you find out.

[KinOhio]

Hi Maggie 1883, and all on post.  My 17-yr old daughter has dysautonomia - POTS, treated with florinef (as well as prozac and lamictal).  Before diagnosis, she had many digestive symptoms (nausea, cramping, bloating, vomiting, mostly in the a.m.). She was tested and found to have dietary fructose intolerance and delayed gastric emptying.  She can't drink the gatorades or the like, or anything with fructose, sorbitol, etc (splenda, fruits, many veggies, juices, sodas).  With the POTS, like princess4969's post on 3/1/09, she eats as organically as possible, no processed foods and as little sugar and carbs as possible, as well as daily supplements (without fructose, sorbitol or manitol).  This with the florinef and increased sodium has helped tremendously.  You may want to switch off the ade's for a while and try to get your electrolytes in other ways to see if this could be exacerbating your symptoms.  We're finding that treating dysautonomia is not an exact science because of all the different causes, types, and symptom combinations that patients may have.
Even though my daughter is doing much better than before treatment, she still is unable to go to school and attends school online (a junior) through www.k12.com.  Removing the stress of trying to get up and make it through a day of school has made a big difference in the quality of her life while she has POTS.  She still goes to school dances with friends at her regular school, and participates socially, which means a lot to her.  
Best wishes to you both, I hope she has a smooth semester till graduation and feels much better soon.  

[1worriedmom12]

Has your daughter gotten any better?  My 16 year old daughter has been diagnosed with POTS.  She has severe stomach pain, bloating, etc but hers is mostly in the evening.  Her docs keep changing her meds trying to find something to help, but so far nothing has helped the stomach issues.

[Heiferly]

The post you replied to is pretty old so it's less likely that you're going to get a response.  We recommend starting a new thread with your own question so it gets the proper attention and responses it deserves.  Just hit the "post a question" button at the top of our community (you can retype your post or just copy/paste it and do some minor editing for context if you wish).  Thanks!

Heiferly.