My daughter (who is almost 17) started having strange episodes in September. At first she would have dizziness and hot flashes. On a few occasions she felt like she was going to pass out. We went to the doctor and they found nothing wrong. She has always been in good health and in the past would only have a headache once or twice a year. About 1 1/2 months ago she started having an almost non-stop headache that would usually be at least a dull ache but at times would increase to a migraine that OTC medications would not touch. She tried Imitrex for the migraines but both times it made the headache intensify and her legs and face were very red hours after taking it. She has since had a Brain MRI and MRA which were normal; an EKG (also normal) and a Holter heart monitor. When taking her blood pressure to be sure it wasn't high we noticed that her pulse was at times in the 90's to 127 which is in part why they ordered the monitor. Her doctor's assistant called me yesterday to say that the Holter monitor was normal although her heart rate did get up to 160 at times. There were no abnormal or irregular beats. I don't understand what would cause a healthy teenager to have a pulse of 160 when she was at home laying around the entire time she had the monitor on. I am also concerned with her hot flashes.......the other night her legs looked sunburned they were so red during a hotflash. She missed an entire week of school because she was so fatigued the week before last. Of course I am also concerned with the dizziness and near fainting as she usually drives herself to school. We are waiting for an appointment with a neurologist (because of the migraines).
I don't feel they are stress related as she has been under much less stress the past few months and there is nothing that seems to connect when these symptoms occur. They are very random.
Has anyone else had these type of symptoms or know anyone who has and may have an idea what might be causing them?
My 9 year old daughter has had the same symptoms for a couple of months now. I am concerned. She gets so red in the face and does not act like her normal chipper self. Last 2 days she has been so tired I had to keep her home from school cause they think I don't let her get enough sleep. What have you found out? What do you suggest that helps?
I have a 17 yr old who started having some of the same symptoms around Oct. 2007. Started with nausea, then weeks of vertigo (they think a virus caused vestibular nerve damage). As the vertigo started to get better she started getting episodes of intense pressure in her head, neck and jaw. She has missed so much school (she is a senior). She is also very very fatigued all the time. So she has had every blood test imaginable, an MRI and CT scan of the brain, thyroid ultrasound, EKG, endoscopy, and has been on many many different medications. She has seen 2 ENT's, 2 Neurologists, a Gastroenterologist, an Endocrinologist, and her primary. She is now in therapy with a clnical social worker for "anxiety" which has done nothing so far -- she is not a stressed out, anxious kid. Drs. are recommending acupuncture at this point, which she is against due to the needles. Just came back from our first round of "acupressure" and we will see how that goes. I'm hoping something will work for her, the drs. feel she is in need of a diagnosis. I can't tell you how worried I am about her prognosis...........
I am a 27 yr old male with much of the same symptoms. They started for me around age 17 and I have yet to find a diagnosis. I would say about four times a year I have hot flashes, dizziness, fatigue, high pulse rate, and high blood pressure. I have on two ocassions blacked out. If you all find out any information/diagnosis please keep the posts coming.
Now we do finally know what was causing the symptoms in my daughter. She was admitted by her Cardiologist to a hospital in Houston at the end of February 2008. They ran tests for everything cardiac related and all were negative with one remaining test Friday morning called Tilt Table Test. It showed positive for POTS (postural orthostatic tachycardia syndrome)! Finally an ANSWER! We were both so relieved to know that there is a cause. The only problem is that finding the right treatment is very difficult.
Apparently it can be often set off after a virus. In my daughter's case they ran a blood test for Epstein-Barr Syndrome (not sure if spelling is correct here) but it was negative.
One thing that you can do that may help is record your blood pressure and pulse readings. Take it first laying down; then again sitting up with legs hanging straight over side of chair/bed; and finally take readings while standing. It seems that in POTS the pulse rate increases by 30 beats per minute from laying down to standing.
They want to rule out other cardiac causes of tachycardia before they look at POTS.
The doctor gave her corticosteroids followed by Beta Blockers and various other meds none of which helped in her particular case. We are really at a frustrating point as she is having a bad relapse and has been unable to go to school for over a month.
It is terrible to watch her go through this because she is a Senior in high school and is so frustrated to be missing out on this year.
Her cardiologist referred us to another doctor who ran MANY blood tests checking for adrenal issues among other things. I am relieved that everything came back negative, but at the same time would like to know if something else is going on in addition to the POTS (as her cardiologist thinks).
I am just not so sure. I have read so many comments on forums from others who are in a state such as her....unable to go to work or school and their only diagnosis is POTS.
There are various types of POTS caused by different things. One is likely hereditary and the treatment for that one (Hyperadrenergic POTS) is completely different than the others.
There are some great articles from a doctor by the name of Blair Grubb who really seems to know a lot about POTS. There was one I found that was published in October 2008 which has a table of medications showing which type of POTS each med is helpful for.
In my daughter's case I believe that she has the 'Hyperadren...' POTS (not sure if I got the spelling right above). That would make sense because all of the medications he has prescribed for her do NOT help this particular type of POTS.
There are some websites that may be helpful:
There is also a list of doctors who are educated in the diagnosis and treatment of POTS at The National Dysautonomia Research Foundation at www.ndrf.org/physicia.htm
You might also try doing some internet searches for 'dysautonomia'; 'Postural Orthostatic Tachycardia Syndrome'; 'Orthostatic Interolance'
I am going to continue research and try to find a clinical trial to enroll her.....or a doctor that actually SPECIALIZES in POTS.
it is frustrating because most doctors are just not familiar with this disorder.
When I mentioned to her Cardiologist that I wondered if she just might have an extreme case with an overlap of Chronic Fatigue Syndrome he seemed to not really believe that 'Chronic Fatigue Syndrome' exists.
I am sorry I am not able to help more......I would be happy to answer any questions you may have about this.
I think this forum is a fantastic way to research for ourselves because hearing the circumstances of others often can lead to discovery of a reason for symptoms.
I wish you luck in your search for more information and please do share what you find helpful for your symptoms!
I just realized that this is posted in the 'Undiagnosed Forums' list. There is now a forum for 'Dysautonomia' which you may also find helpful.
KATEFEB26 and pattig I am very sorry I never saw your replies until now....hopefully you have found answers yourself by now!
has your daughter been tested for pheochromocytoma, this condition can cause all the symptoms that you are describing, if you do a search on pheochromocytoma there is a website that is full of information
Yes, that is one of the tests they ran first. She has been diagnosed with POTS and it was later found to be the Hyperadrenergic form which is usually hereditary and requires different treatment than most forms of POTS.
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