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Help! Does POTS ever go away?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Help! Does POTS ever go away?

After over 6 months of dizziness and lightheadedness, I finally went to the doctor. While all blood tests were normal, as well as my blood pressure, my heart rate went from 90 while laying to 124 while standing. Finally, my doctor saod she thinks I may have POTS. I'm scared. I'm only 21 and have my whole life ahead of me. I'm already scared to go out with friends or go out at all sometimes because of the dizziness. This past week it has gotten worse, and I have also experienced nausea. Does POTS ever go away? Will I ever get better or will I live like this for the rest of my life. I want to have a family.. and to travel. Also, I read that fatigue and migraines are main symptoms of POTS. I do not experience these symptoms.. but now I am afraid I will develop them. Can anyone give me some answers? =(
Tags: POTS
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Avatar_f_tn
  Have you had an MRI to rule out brain tumor? There can be a tumor even with normal blood tests.
You won't necessarily develop migraines but fatigue is pretty common with all Dysautonomia.
Have you been to an Autonomic Disorders specialist?
There is much to learn about POTS and other similar conditions. I am just learning myself. Others on this forum will be able to give you more info than I. Do google search for Dysautonomia,  DINET dot org. LOTS of info. POTS can "go away". There are things that can help a lot.
I wish I could be more help. You will find lots of support here.

Enzy
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612876_tn?1355518095
Sorry to contradict you enzymelover, but I think that it is probably rather unlikely given the limited number of symptoms and the particular signs/symptoms that Jenzy is experiencing that MRI to rule out brain tumor will be warranted.  Jenzy, if this is a concern of yours you are certainly welcome to raise it with your physician, but don't be terribly surprised if s/he tells you that you don't need this test.  Not every patient with dysautonomia/suspected dysautonomia does; it depends on the constellation of signs/symptoms.

I'm sure that the past 6 months of symptoms seems like EONS stretching out behind you, but can you think back and remember if you had any triggering events that coincided with the start of the POTS symptoms such as a viral illness, pregnancy, car accident or other major injury, surgery, etc.?  Or did it come on quite suddenly one day without apparent trigger?  Or did it seem gradual?  Some specialists think knowing this can give a better idea of prognosis ... though even this is rather fuzzy and won't hold true for every patient.

I think you have an understandably difficult mental balancing act to work through right now.  You're trying to learn about this condition without scaring yourself.  Knowing all the possible symptoms can be very intimidating, as can knowing the varying severity levels different patients have.  This may be of comfort:  there is no disease called "POTS."  (I'm not making that up, you can ask your doctor, hehehe ... bear with me here.  It has to do with medical terminology and our poor understanding of it as laypersons.)

POTS is by definition a "syndrome."  A syndrome is not the same thing as a disease.  A syndrome is just a collection of signs/symptoms that tend to occur together (sometimes for known reasons, sometimes for reasons medicine has yet to figure out).  Frequently syndromes can have several (or many) different and diverse causes; so it is with POTS.  One reason that each patient with POTS has his/her own "brand" of POTS in terms of which signs/symptoms affect her/him; how severe the illness is; whether it comes in cycles, is constant for a while and then goes away forever, progressively gets worse, gets better and worse at different times, or is cured whenever the primary disorder (causing the secondary POTS) is cured; and how easily it is managed with medications and lifestyle changes is because each patient may have this same syndrome, but the underlying cause is different from case to case to case.

Some known underlying causes of postural orthostatic tachycardia syndrome include:  norepinephrine transporter deficiency, ehlers-danlos syndrome/joint hypermobility syndrome, chronic fatigue syndrome, mitral valve prolapse, post-viral, physical trauma (e.g., motor vehicle accident), some autoimmune diseases (e.g., sjogren's), and diabetes (due to autonomic neuropathy).  Some patients never know what causes their POTS.  What's important to always keep in mind is that often the "scariest" things you read about POTS relate to cases where people have serious underlying conditions that you very likely may not have.  It's very likely that "what ifs" about the worst case scenarios may never apply to your case and are only serving to give you unneeded anxiety!  

Here's the good news I can give you for the here and now:  at the moment, you have every reason to believe your case of POTS is highly treatable and that you very well may overcome this.  Have you started any form of treatment yet?  What has your doctor Rxed and what lifestyle changes were recommended?

Keep talking here, we'll be happy to talk you through these first stages of tackling this new diagnosis and getting on with your life!  
-Heiferly.
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Avatar_f_tn
   I agree that Jenzy's doctors will not feel MRI is warranted, due to her normal blood tests and blood pressure. I was just asking if she'd ever had one. I keep thinking about the chiropractor I took my son to, who said, "Don't waste your money on an MRI. It won't find anything". He was so wrong. At the time, my son's symptoms were, extreme light sensitivity, lightheadedness, digestive issues and morning nausea. His blood tests were "normal", saliva test said otherwise. His tumor would have been found 1 year earlier, but for this doctor's comment.
A central nervous system tumor can be one cause of autonomic dysfunction, but I know there are  many others.
I don't want to needlessly scare anyone, I just hate to see people with pituitary tumors go undiagnosed, because a doctor doesn't recognize the symptoms, regardless of "normal" blood tests. My son didn't get his MRI until his IGF-1 (growth hormone) was too low, and an endocrinologist thought to order a prolactin test (which was elevated).
He now has severe orthostatic intolerance, but the mechanism of it is not yet known. I no longer believe he has POTS, as his heart rate does slow down to about 110 after standing  30 to 40 seconds (usually), however, it is at this point he can no longer stand, due to weakness, dizziness and feeling faint.

I believe his problem has to do with over- dilated blood vessels and elevated norepinephrine, but we don't know enough yet - still workin' on it.

I hope Jenzy's doctors work to find the cause of her symptoms. As you said, POTS is not a disease, but a syndrome of particular symptoms.
How are you doing, by the way? Are your migraines lessening at all?
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       Since I have not posted to you yet I would like to start by saying "Welcome to the Forum" glad to have you here but sad you have been ill.

  Heiferly has givin you some "Awesome" information!
Thee is really not anything more for me to add except that I do hope that you get a better understanding of your "Syndrome" and how it may react / live in your life.

     Well, I guess I could add that an ElectroPhysiologist had told me that some people can have this for a brief time and then not again.  I have no idea if that holds any weight to it or not.

Good Luck and please continue to post here on the Forum.
Take Care,
~Tonya
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612876_tn?1355518095
I'm currently battling heat intolerance (oh lovely Ohio and it's full complement of seasons).  It's a scorcher here this week.  As for the migraines, I'm waiting on one of those wonderful prior approvals from my insurance to get my Rx for that needle-less injection filled; hopefully they'll approve the SumaVel DosePro thingers, even though they're expensive, because that's the only thing I've found that has actually worked on my really bad ones.  

Thanks for the information on tumors.  I honestly was not aware that tumors could present with minimal symptoms and no abnormal blood labs as you described ... how frightening.  I'm sorry to hear about the delay in your son's diagnosis.  This is why I love the community here:  we learn so much from each other.  I will keep this in mind for the future.  Over-dilated blood vessels (venous insufficiency is the diagnostic term--I have the dx code for it if you want that for any reason; it is useful for ordering compression hosiery with insurance coverage) is a common component in cases of POTS.  Elevated plasma NE levels are not at all infrequent in POTS patients either.  Which is all to say that "POTS" would just be descriptive of the syndrome of signs and symptoms which are occurring, not diagnostic of the condition, and neither of the signs you mention are mutually exclusive of a POTS diagnosis (indeed, they are quite consistent with POTS).  Because you have a known primary diagnosis that would account for nervous system disturbance in your son's case, he would most likely be diagnosed with "secondary POTS" (secondary to the effects of the tumor).  Have your son's specialists gone into any of this in any detail with you?  Let me know if you want more reading on any of this.  I have medical journal articles on POTS coming out my ears.  ;-)
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Avatar_f_tn
Hi there! This is what I got about - Prognosis (prediction of the course or outcome of a disease) and Impact of POTS - from Dr Blair Grubb

At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed.
Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction.
However, some patients do not recover, and a small subset will worsen over time.
For the most part, the younger the patient, the better the prognosis.
In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy.
Patients with the hyperadrenergic form of POTS usually require therapy indefinitely.
The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder.

http://circ.ahajournals.org/cgi/reprint/117/21/2814

So don't despair too much :-)  As stated, near to 90% of people do recover with meds and physical therapy, and because you are young your chances are even better!

Don't stress too much about other'e people symptoms; everybody are different. POTS is a syndrome, which mean that not everybody suffering from it will have the exact same symptoms.

Concentrate on you own POTS symptoms and take everything one day at a time.

And don't forget hope is a potent medicine  :-)
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Avatar_n_tn
Hey you were lucky it only took you six months to be diagnosed. It took me over a year and a half and about 12 doctors, neurologists, allergist, ents, I cant even remember all I went to and  2 hospital stays, countless tests, including mris, cat scans, eegs, ekgs, echos etc.  I was told I was depressed so many times, that I started to believe it. I finally went to a family dr. who diagnosed me. He put me on zoloft, topomax (topamax), a beta blocker and surpisingly enough vitamin D and and my life has changed dramatically. I am not totally symptom free, but and can now get through days without worrying if I am going to pass out all the time. My pots by the way, besides standing too long is mostly weather related. Any time there is a thunderstorm or high humidity I go down. Good luck with yours! I hope you can find some one who can help!
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Avatar_f_tn
My daughter came down with p.o.t.s when she was a toddler she's 19 now and at age 11 her p.o.t.s has gotten worse now age 19 its takening over her life. We need help she's been seeing doctors for years and medication she has been on not helping i want to see a cure for this syndrome or at least find out what is exactly going on with the person who have p.o.t.s. instead of just guessing and using the patient as a guinnine pig until the doctors actually help some one with this syndrome.
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612876_tn?1355518095
In order for your post to get the attention it deserves, it would be preferable for you to start a new thread of your own since you are starting a new topic and this thread is from a discussion from May of this year.  To start a new topic in our forum, click on the green "Post a Question" button at the top of the page in the header box with the description of the Dysautonomia Community.  Thanks so much!
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Avatar_f_tn
I have POTS also my doctor put me on a beta blocker and another medicine, so should yours. Make sure you go to a cardiologist they will give the best answers, my POTS is caused by a growth spurt and I do not have symptoms if I stay in line with my medication
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612876_tn?1355518095
Beta blockers are not appropriate for all patients, nor is there any one-size-fits all treatment approach for dysautonomia. It is fine to say what works for you, but please don't give medical advice.
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4703993_tn?1379771988
Well said... i went to 2 different specialist.. since i have eds fibro chiari and pots both drs said the pots will not go away but may go into "remission" for a little but will come back.. i was diagnosed at age 26 with all of the above dxs plus other health issues.. my career was going outstanding..i have my degree.. and now i was forced to resign and apply for ssd... i know all too well how hard this is..... wish u the best of luck xo
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7707879_tn?1393518655
my daughter was also diagnosis with POTS about a month ago...which was February 12 2014 ...she is also Hyperthyroidism... in 2011...  and you have Palpitation from Thyroid...she was ok...when she took her thyroid meds..but starting this year two week after her 21st birthday...she starting having palpitation when she was active like standing and doing normal things...when she sat down she was fine...Palpitation and feeling faintness and shortness , of breath., but never fainted.she was in the Hospital for this...it took a special Cardiologist to Diagnoisis who specialize with the arrhythmia of the Hearth...no tilt tab test was done...she sits she was fine...she stands heart rate went from normal to 120 everyone thought it was weird...she has not pain , heart is healthy, just palpitation and bad feel comes over her. she was told to drink lots of Gatorade and eat salty foods. they gave her bata block in the hospital, but she don't dwell on them.she have been doing ok...she is a college student.
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