Discussions By Condition: I cannot get a diagnosis.

Autonomic sympathetic disregulation?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: fenstege
  • December 1, 2009
  • 11:23 PM

For 3 years we've been searching for help for my now 15 yr old daughter.
She gets 3-5 "ice-cream headaches" an hour 24/7. Duration = 30 seconds to 7 minutes. Location varies. On a pain scale of 1-10 (10 highest), they range from 3-8. We can't find any triggers - stress, food, allergy, evironmental, illness, cycle, growth spurts - nothing. She also experiences about 1/3+ of the symptoms of B12 deficiency that come and go. Coordination issues, lightheadedness, tremors, pallor, fatigue, cold skin, GERD, disturbed sleep. She gets between 3-5 hrs of sleep per night, about 45 minutes-1 hour consecutively. The dizziness is something we can manage, but we've found nothing for the pain. Specialists = 4 Neurologists, Adolescent medicine, pediatric cardiology, Psychology, dentistry, Opthamologists + PCPs. All tests = normal - MRIs, CBC, chem panel, eye, teeth, EEG, EKG, Halter Monitor. She's been on amitryptaline, fludrocortisone, Indocin, Rozerem, Sertraline. No measurable affect except the Rozerem helps her get more sleep, still not consecutive.
The only time she doesn't experience them is during intense physical activity - like volleyball practice or games. When they take a break during practice, she can count on head pain in less than a minute.
I did the dizziness, tremors, pallor, fatigue when I was her age, but grew out of it. One neurologist said could be a hereditary condition and could likely ease by age 21-23. I did not experience the same type of head pain and that is her key problem.

Stable home, no sexperimentation or drug/alcohol use. Live in rural PA. 4.1 grade point average, lots of friends. Normal menses. No allergies. Copes well, good body image, good self esteem, normal pain tolerance. Family history of headaches / migraines on both sides, but NONE like these.

I'm trying to research dysautonomia. Any other ideas?

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  • For 3 years we've been searching for help for my now 15 yr old daughter. She gets 3-5 "ice-cream headaches" an hour 24/7. Duration = 30 seconds to 7 minutes. Location varies. On a pain scale of 1-10 (10 highest), they range from 3-8. We can't find any triggers - stress, food, allergy, evironmental, illness, cycle, growth spurts - nothing. She also experiences about 1/3+ of the symptoms of B12 deficiency that come and go. Coordination issues, lightheadedness, tremors, pallor, fatigue, cold skin, GERD, disturbed sleep. She gets between 3-5 hrs of sleep per night, about 45 minutes-1 hour consecutively. The dizziness is something we can manage, but we've found nothing for the pain. Specialists = 4 Neurologists, Adolescent medicine, pediatric cardiology, Psychology, dentistry, Opthamologists + PCPs. All tests = normal - MRIs, CBC, chem panel, eye, teeth, EEG, EKG, Halter Monitor. She's been on amitryptaline, fludrocortisone, Indocin, Rozerem, Sertraline. No measurable affect except the Rozerem helps her get more sleep, still not consecutive.The only time she doesn't experience them is during intense physical activity - like volleyball practice or games. When they take a break during practice, she can count on head pain in less than a minute.I did the dizziness, tremors, pallor, fatigue when I was her age, but grew out of it. One neurologist said could be a hereditary condition and could likely ease by age 21-23. I did not experience the same type of head pain and that is her key problem. Stable home, no sexperimentation or drug/alcohol use. Live in rural PA. 4.1 grade point average, lots of friends. Normal menses. No allergies. Copes well, good body image, good self esteem, normal pain tolerance. Family history of headaches / migraines on both sides, but NONE like these. I'm trying to research dysautonomia. Any other ideas?Hi... My name is Keilah McNaughton and I am 18 years old. I have suffered from a lot of very similar things as your daughter for many years and, like yourself, have gone from specialist to specialist to try to find answers. I live in Mount Joy, PA, and have recently received a diagnosis of Dysautonomia (among other diagnosis). Please, please contact me at KM687862@wcupa.edu. I would love to talk with you more. Sometimes it seems like there's no hope, but I really encourage you and your daughter to have hope. I have not quite found the answer either... but I am still trying. I actually have an upcoming appointment with Dr Weimer at the Neurology Institute in New York. Please, please contact me. I'd love to talk with you more.
    Anonymous 42789 Replies Flag this Response
  • hi, i have one of the commoner dysautonomia conditions called postural orthostatic tachycardia syndrome (POTS). Thou she gets dizzy and has POTS like symptoms eg dizziness etc, Your daughters condition doesnt sound like POTS to me and isnt nothing like how I experience POTS (but there are other forums of dysautonomia thou your daughters symptoms dont sound like none i know). A good site on dysautonomia is http://www.dinet.org/ * why i dont think she has POTS.. You didnt mention her having heat sensitivity (heat usually affects POTS people) and the fact she gets better when she exercises makes me think it's likely she has something else. (during exercise makes my POTS worst as it makes me get warm..and with warmness.. it brings on POTS attack). With POTS there is also often things like irritable bowel syndrome due to it being an autonomic disorder.. also often POTS people experience thirst and hence needing to drink a lot (i drink up to 28 cups per day at times.. my POTS is extreme thou). Your daughter has also nothing like this which helps point to it being POTS. There are triggers for POTS and things which often make it worst, your daughter has none of those by the sounds of it. POTS is also more likely when standing (thou in some severe cases they do get all the time). The headaches you describe..are different to what I experience with POTS (thou maybe some do get headaches like that with it, I dont know)..................... If you want to 100% know if it could be POTS or not and i do suggest you do this just in case seeing there is certainly nothing to loose by testing it, i suggest for you and her to test her for it by doing what is often refered to as the "poor mans test" (This is sometimes done to test for it instead of a tilt table test). When she wakes in the morning before she moves about or gets up.. take her heart rate.. then have her get out of bed and just stand. Take her heart rate at one minute, 5 minute and 10 minute while shes just standing there. If it has increased by over 30 beats a minute or goes to or over 120 beats per min while standing. She has POTS.
    taniaaust1 2267 Replies Flag this Response
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