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Dysautonomia?
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Dysautonomia?

Dear doctors,
Thank you for taking the time to review and answer my question.
I had an onset of symptoms in early childhood (preschool age) that have continued through adulthood (I am a 30 year old woman).
I have episodes of pallor/flushing associated with fatigue and sinus tachycardia. I occaisionally have headaches associated with these episodes (the headaches were more severe when I was younger but have dissipated over the last few years). I also often have nausea with these episodes. I often have hand tremors with these episodes. When I was younger I experienced many episodes of graying out, also a couple of syncopal episodes. These were often, not always, associated with a change in position from sitting/lying to standing. These symptoms have greatly decreased and I now experience only mild, transient lightheadedness - very rarely any graying out or visual disturbances as when I was younger. I occaisionally have paresthesias of my extremities and muscle fasiculations. I occaisionally have shooting pains in my extremities. I have always had an increased number of bowel movements (4-8 per day)- usually they are normal bm just increased in frequency.

The most troubling of my symptoms are the pallor/flushing with fatigue and sinus tach - when I was younger I seemed to bounce back from these episodes much easier - now the flushing is more severe (I am told my face is beet red) and feels like it is on fire, and the associated fatigue lasts for hours after the flushing has subsided. The fatigue makes it extremely difficult to concentrate on even the simplest of tasks.

I am in a very stress-free period of life and have been for several years. I don't take any medications and I don't touch caffeine, sugar or alcohol. I drink at least 64 ounces of H2O per day - often more. I don't eat junk food - I have a very healthy and nutritious diet. I exercise - I walk 30-45 minutes per day at least 5 days per week, low-impact aerobics 3x/week and toning exercises 2-3 days per week.

I have had a glucose tolerance test (completely normal, throwing out the "diagnosis" of hypoglycemia I received as a child (no blood test was done when I was diagnosed by my pediatrician). My thyroid gland is normal as are basics chemistries and cbc. I tested negative for pheochromocytoma (catecholemines and plasma metenephrines - urinary catecholemine study results are pending)
I had a normal tilt table test. A cardiac event monitor and holter monitor associated the lightheadedness, flushing, and fatigue with sinus tachycardia with rates usually 120-140, occ. as high as 165. My resting HR is 75-80. Resting BP 100-110/60-65. Occ. mild increase in BP during some episodes (BP Inc. by 20-30 points over resting). Usualy BP is stable during episodes.
Echocardiogram is completely normal. My cardiologist believes the sinus tach is not cardiac in origin, and believes I have some type of catecholemine disorder. My primary doctor thinks I may have dysautonomia.

My questions are these (and I apologize for the lengthy description): 1) Are my symptoms consistent with a possible catecholemine disorder/dysautonomia?  2)What catecholemine disorders/dysautonmia disorders have a childhood onset with progressive symptoms similar to mine and where can I find info on them ie Dx, Tx, Prognosis?

Again, thank you for your help and time.
Sincerely, Joyce
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Dear Joyce:

Sorry to hear about your problems.  Most of the syndromes that would give you a dysautonomic picture beginning in childhod have characteristics that would have given you a diagnosis by this time.  Most of these have obvious features.  With a completely normal work up thus far, I am not sure what to tell you.  The episodic nature, including headache, makes one thing of two things, atypical migraine and seizure.  Wait until the outstanding test are back and if normal, then maybe think about these two entities.  

Sincerely,

CCF Neuro MD
10 Comments
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Avatar_n_tn
i too, was told my symptoms were due to dysautonomia. i had many symptoms, fading out upon changing position, low blood pressure, palpitations, nausea. however, now i am under treatment for severe depression, i believe was brought on by the lenght of time i have suffered these symptoms without relief. even the depression isn't responding to treatment. so i don't know where to turn now. i also have restless legs that drive my to distraction. i have had a ct scan because of severe headaches to rule out tumors, but that is the only test other that routine blood work and ekg, which was borderline normal. what might i try next? any suggestions would be appreciated. thanks
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Dear Diagnosis?

I am not sure I can help much. The information doesn't seem to be leading me in any direction, and I do not know any of your work up thus far.  The restless legs, does it keep you from sleeping at night?  If so, have you had a sleep study?  The headaches may be migraine, but you need to see a neurologist to make sure.  I think I would gather all the information you have and see a good neurologist.

Sincerely,

CCF Neuro MD
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i have not had any "workup". i have seen an internist, and she really hasn't offered much in the way of answers. i haven't told her about the restless leg yet, there were more pressing matters to tend to. the doctor is under the impression that my problems stem from the depression, i can't make them understand that i am depressed because of the problems. anyway, i was VERY sick. my headaches are mostly in the back of my head, and very intense. i get dizzy and nauseated. it is a throbbing, especially if i bend over or exert myself. i get the same sensation in my head when i am having palpitations. does this sound like migranes (migraines)? my blood pressure drops when i rise from sitting or lying down, i will fade out but never pass out. i have alot of nausea, my ears ring (this has occured for as long as i can remember) my prior internist called it dysautonomia, my present doc says no. i'm just confused, and not getting any better. i am taking pills for depression, pills for sleep, pills for nausea, a pill for everything yet i dont know what we're treating. as for the restless legs, YES they keep me awake! at times they keep me from sitting to watch tv or read. its the strangest sensation, not pain but i HAVE to move. i hate it! sometimes the sleep medication helps, but not always. i know this doesn't give you much more info, but i have not had any tests other that blood work, ekg, gi, and the ct scan. these were 3 years ago, and i dont know any more now than i did then. i don't know whether to seek out another doctor, a specialist or just go with what i'm doing now. the meds i am on are:compazine for nausea, remeron for depression, ambien for sleep, prevacid for acid reflux and i have phenergan for nausea if i need it.can you offer any suggestions? as for the restless leg, what is used to treat it and is it a circulatory problem or a problem with nerve conduction? i also have been having alot of cramps in my feet. sorry to be so long. thanks for any advice you can give.
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Avatar_n_tn
There is a great website that offers much informaiton on different forms of dysautonomia along with a medical referal site.  I had the same type of problems for years and fianlly stumbled upon this site and was able to find a doctor to help.

National Dysautonomia Research Foundation

www.ndrf.org

If you need additional help please emal me ***@****
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Avatar_n_tn
Thanks for the information.

CCF Neuro MD
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Avatar_n_tn
Dear Doctor,
     Thank you for your answer. I had a diving accident as a child in which I suffered severe head and neck trauma- the attending physician at the ER said I came very close to becoming quadraplegic. This accident preceded the onset of most, but not all, of my symptoms. Could there be a relation to the accident and the symptoms I have had for so many years?

Thanks! Joyce
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Avatar_n_tn
Dear Joyce:

Anything is possible, but I would try and figure out if anything else is going on.  The migraine angle and epilepsy may be possibilities as previously mentioned.  

CCF Neuro MD
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Dear Doctor:
Thanks again for all your help.

Sincerely, Joyce
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your welcome

CCF Neuro MD
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