pots/dysautonomia

[nessa15]

well im 16 and after 2 and a half years of all the doctors tellin me it was all in my head i finally know i have dysautonomia/pots and another type....i was wondering can anybody tell me about pots and dysautonomia i know little about it and id really like to know more

[Heiferly]

Hi daniel, welcome to our community!

Unfortunately, you seem to have found and responded to a very old post from the middle of 2009, about two years ago.  We would like to encourage you to start your own post instead, because these old threads can be very outdated and the people who posted in them may be in completely different situations by now, or may no longer even be awaiting a response at all.

We'd love to hear from you and get to know you in your own post.  To start your own thread, click on the green "Post a Question" button at the top of the page here in the Dysautonomia Community.  You can just introduce yourself to the community and tell us a bit about your POTS, or you can ask questions if you have any.

Thanks so much!
-Heiferly.

[danielk211]

I am i 13 year old boy with POTS, (I know its uncommon) and your list of symptoms are classic POTS symptoms. My best advice it to drink ALOT! You need to drink at least 4000ml of water/gatorade every day. try to avoid caffine, it makes your heart beat too fast. I am still new to this syndrome, so i am still trying to get an exercise routine. Do not lie around all day if you arent feeling well, try to get some light exercise if you can handle it.

[halbashes]

I'd recommend that you see a Dysautonomia Specialist.  Even if you've already been partially diagnosed, a specialist will be able to pinpoint any type of complexity to your diagnosis.  Perhaps even more importantly, you could begin treatment.  Have you ever tried a drug like Florinef, or a Beta Blocker?  Has Zofran at least eliminated some of your nausea?  (By the way, although can be very helpful for nausea, it also has the tendency to further lower blood pressure.)  I hope you feel better!

Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

If you are only a state away from Cleveland Clinic:
http://my.clevelandclinic.org/neuromuscular_center/services/autonomic_laboratory.aspx

[LivingInHope]

Let me try that last part again.  I was diagnosed with POTS a few years ago.  But iron deficiency was making my symptoms worse- I had even higher beats per minute than I do currently (my highest right now that I know of was in the low 150s), more shortness of breath, more chest pains, and fatigue when I had low iron.  You can have low iron, as I have in the past, and still have your CBC be normal, which is why it is important for your doctor to order blood iron, ferritin and T.I.B.C. (total iron binding capacity) levels as well.

[LivingInHope]

I hope the doctor has tested you for endocrine issues (TSH, FSH, plasma-free metanephrines, etc) with your symptoms, as well as a gall bladder check and has tried to find out what is causing your severe lower back pain and neck pain.

Have you had your blood iron, ferritin and T.I.B.C. checked, as low iron, even if a CBC is normal caused for me with my P.O.T.S. higher tachycardia numbers, more shortness of breath, more chest pains and fatigue?

[nessa15]

well i was diagnosed by my family pediatrician and im not on any treatments i just take ibuprofen 600mg and zofran for nausea and an inhaler and thats it...o and i was diagnosed with another kind of dysautonomia but my doc is not sure wich kind she just said she knows i have another type and i was diagnosed with VASOMOTOR INSTABILITY but i dont know much about it...
MY SYMPTOMS ARE......
severe upper right quad pain
abdominal cramps
diarhhea/constipation
high and low blood pressure
hot falshes
cold chills
heat/cold intolerance
severe lower back pain
dizziness
blurry/double vision and blackouts
frequent muscle spasms all over
tremors
severe headaches
palpatations
severe chest pain
my legs give out on me for walkin
neck pains
shortness of breath
frequent urination
blood pooling to feet/legs
numbness and tingling
stiffness
severe debilitating fatigue
severe nausea
pain behind my eyes
swollen lyph node
fevers/low grade fevers
SWEATING ALOT!!!!!!
lightheaded
presyncope
bloating
sleep disturbance/insomnia
generalized weakness
tachycardia
flushing
exercise intolerance....!!
balance problems
easily over stimulated
many food/other allergies
dermographia
loss of appetite
feeling full very quickly
light/noise sensitive
muscle/joint pain
really thirsty and more....!!!!

[halbashes]

Unfortunately, it's not all that uncommon for diagnosis of POTS, (or other forms of Dysautonomia), to be delayed multiple years past the onset of symptoms.  Misdiagnosis is common as well.  Dysautonomia patients may easily be misdiagnosed with Epilepsy, Anxiety Disorders, Heart Arrhythmia, etc.  It can be a real struggle to diagnose, treat, and ultimately to live with.

Where were you diagnosed with POTS?  Which treatments have been most helpful to you?  What kinds of symptoms are you experiencing now?

Further reading on Dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

Handbook for Patients with Dysautonomia:
http://www.ndrf.org/NDRFHandbook.htm

Postural Tachycardia Syndrome - Blair Grubb:
http://knol.google.com/k/-/postural-tachycardia-syndrome