mkgirl01 Posted September 7, 2013 Report Share Posted September 7, 2013 Hello everyone I am new here and I'm having a difficult time..... So I was diagnosed with anxiety but I've been reading a lot on pots and I'm now torn..... If someone could lend me advice and would like to know my story and really take time with me that would be great!!!!! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 7, 2013 Report Share Posted September 7, 2013 Hi Mkgirl, please feel free to share your story so that we may be able to offer you some suggestions and ideas to discuss with your doctor. Your amongst friends Sarah Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 Thank you very much! It is very nice to feel welcomed! Well let me start off by saying that I am a 20 year old female when my problems started I was about to graduate college.... It started out with random dizzy spells then one day I got dizzy then 10 min after I got the chills my heart was racing and I had diariah ... Then every time after I ate I had to run to the bathroom .... So one day I woke up with my heart racing it was up to 150 I went to the er after awhile it came down...my life was changed forever i hve many symptoms and I've had many many tests and nothing is wrong... I'm not sure weather it's all anxiety or pots or both Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 7, 2013 Report Share Posted September 7, 2013 Mkgirl,Welcome. There isn't any way for us to diagnose you here. But many of us did receive an inaccurate diagnosis of anxiety before finally being correctly diagnosed with pots. If you share what state you are in we may be able to suggest some doctors in your neck of the woods that are familiar with autonomic dysfunction and would be able to examine you and run a tilt table test which is the definitive diagnostic test for pots and some other forms of dysautonomia. Finding the right doctor would be the first step in figuring it all out. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 7, 2013 Report Share Posted September 7, 2013 Mkgirl,I'll echo what Katie said above. We're here to help, but in no way can we diagnose you.I was misdiagnosed with anxiety/depression, like many others with dysautonomia, but I knew deep down that the doctors were not seeing the real issues. So I kept pushing for answers, I kept looking for a dr who would take me seriously and would be willing to recommend the right tests. I did find such a dr, lucky for me relatively fast after I started having symptoms and he was able to see the real medical issue where others have seen an anxious depressed patient.Having a diagnosis is only half the battle though as in my experience of 2 years treatment for POTS takes a lot of trial and error. What has helped me was reading, researching, looking for alternatives, going back to my drs and not being afraid to tell them that whatever meds they have prescribed didn't work for me. Ever tried a poor man's tilt table test? (that would be checking your blood pressure and heart rate after lying down perfectly relaxed for 10 min and then after 1, 3, 5, and 10 min of being upright). In POTS you should see a sustained increase in HR of at least 30 bpm when going from supine to standing, or a standing HR of over 120 bpm while your BP shouldn't significantly change when you assume upright position.I hope this helps.Best of luck and welcome to dinet. Alex Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 7, 2013 Report Share Posted September 7, 2013 Welcome! Sorry you are having such struggles at such a young age.As the others have said, trying a poorman's tilt table at home will hopefully give you some direction as to whether it's POTS or not. You didn't mention whether you have emotional feelings of anxiety when you have the physical symptoms you describe. The fact that you are describing mostly physical symptoms makes it sound like that is more of the issue for you and therefore makes it seem like POTS would certainly be worthwhile to explore.When I was at Cleveland Clinic a few years ago to get an official diagnosis, the cardiologist I saw in their autonomic center said she had not seen a single patient come thru her clinic who hadn't been diagnosed with anxiety and/or depression prior to getting to her. So, that may tell you just how common it is for those of us with POTS to get misdiagnosed with anxiety. Hang in there! Quote Link to comment Share on other sites More sharing options...
corina Posted September 7, 2013 Report Share Posted September 7, 2013 Hi MKgirl, welcome to the forum (though sorry you have reason to be here)! Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 I will try the poor mans tilt table and ill post results here Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 My readings Laying down bp 116/76 pulse 86 .... I used pulse rate idk if that's the same thing from heart rateStanding 1 min 118/81 pulse 1133 min 113/78. 1075 min. 113/ 79. 10110 min. 107/ 74. 109 Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 But if I do it myself by taking my own pulse laying it was 80 and standing it was 100 Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 7, 2013 Report Share Posted September 7, 2013 MKgirl.. have you had a tilt test or any autonomic workups as of yet? Alex and others make a really good point about being diagnosed with dysautonomia or anxiety. For years my migraines and GI symptoms were diagnosed with stress and anxiety, my spikes in BP and Tachycardia came last. My POTS symptoms started too when I was around 20. In college and working. Then one day I got hit with a migraine they thought was a stroke and things have changed every since. I'm doing better now with the combo of medications but it is a lot of work and trial and error.You know your body better than anyone else.. so I would get some second, third, fourth opinions (Like most of us have had).. anyway, like Katy suggested, I think your best bet would be to find a dr. who specialized in autonomic dysfunction. Here is a list of such doctors by state:http://www.ndrf.org/physicia.htm#sectNhope this helps. good luck with everything and hang in there! Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 Do my readings sound like pots? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 7, 2013 Report Share Posted September 7, 2013 Morning, This is a link that is the clinical diagnostic criteria for POTS..http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/table/T1/Here is a really good website that explains a lot. Please try to read the Psychological Findings in POTS sectionhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 Is pots deadly??? This is all so new to me I'm sorry I'm just very upset right now Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 7, 2013 Report Share Posted September 7, 2013 Pots isn't deadly...it's just a pain in the rear end. Staying calm and going about this step by step will help to not make your symptoms worse. There is some question as to what you have, so the next step is seeing a doctor that specializes in autonomic dysfunction. They will put you through some tests to evaluate you further. Pots is rare so most doctors aren't going to even know what it is let alone how to diagnose and treat it. The doctors list link that Sarah posted should help you find a specialist. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 Thanks I'm just very upset right now Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 7, 2013 Report Share Posted September 7, 2013 MKgirl,I know how scary this can be. Especially in the beginning stages when your not diagnosed and wondering whats going on with your body. The good news if this is pots, there are medications out there that can help you, along with life style changes. Don't lose hope and try your best not to panic (Easier said than done). Im sorry that you are so upset but you are taking the first step in trying to find out what is going on.. that takes a lot of courage. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 I'm just terrified..... I don't want to die Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 7, 2013 Report Share Posted September 7, 2013 It also depends on what time of the day your doing to poor mans ttt. A lot of us are worst in the morning and some of us are pots free at night. It sounds like you are in the right page looking for answers. It could be pots. Dont be upset, no one is ever alone in how they feel. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 7, 2013 Report Share Posted September 7, 2013 I started out with GI issues aswell. I would get really bad thumps in my chest and two seconds later, running for the toilet. Thankfully that went away! Dysautonomia is a tricky monster, good luck! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 7, 2013 Report Share Posted September 7, 2013 I'm just terrified..... I don't want to dieThe symptoms of POTS can be scary, but in 10+ years of being on this forum I have yet to know of any member or hear of anyone who has died of POTS. It is not considered life-threatening (although fainting, if a patient is fainting and falling, can of course be dangerous). It can be disabling. Fortunately there are medical treatments that are often effective, or the condition may just improve on its own over time, depending on the cause. The first step is getting a correct diagnosis and finding a doctor who is familiar with the condition (if that is what you have) so he or she can work with you to find the best treatment for you. Hope you are able to find a doctor who can diagnose what is going on with you and that you feel much better soon! Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 7, 2013 Author Report Share Posted September 7, 2013 Is this manageable? Can I live normally? Will it get worse over time? Will this eventually kil me? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 7, 2013 Report Share Posted September 7, 2013 Have you been diagnosed at this point? I definitely understand your feelings, as I also felt fearful when I was very sick, and first diagnosed. For most people, it is manageable. Keep in mind that the sickest people tend to seek out support forums, so while you may see a lot patients on DINET who are having a hard time, this does not mean this is typical or that they will always be sick. What research has been done seems to show that most people with POTS improve over time. There are medications that work for most people, although it may take some time to find what works for you.POTS is not considered to be progressive--it will not progressively get worse and worse and eventually kill you. Please see what I just wrote above your last post. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 7, 2013 Report Share Posted September 7, 2013 Yes it's manageable.Yyes you can learn to live with it (if this is what you're really dealing with).No one can predict though the evolution of an illness/syndrome in a patient.To the best of my knowledge it's not life threatening, but it can be challenging and your quality of life can be diminished to some extent.Please try not to jump to conclusions and not to think in terms of worst case scenarios, particularly since you don't have a diagnosis yet. A positive attitude is a key component of any treatment plan, no matter the condition treated.Ever tried meditation or deep breathing? - lots of benefits (at least from my experience) and also lots of free online resources.Best,Alex Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 7, 2013 Report Share Posted September 7, 2013 I agree with Alex completely. It's true that no one can predict -- and certainly no one can figure out what your specific situation is--via internet, and also we are not physicians--you can't get a diagnosis or prognosis on the support forum. But I think you should feel reassured, if you are diagnosed with POTS, that this diagnosis is not by any means, a death sentence.I would add that a good resource regarding meditation and breathing and health is Dr. Weil's website. He has a book called *Spontaneous Healing* that helped me when I was very sick--it includes breathing exercises intended to "calm" the autonomic nervous system that I found helpful to practice. Quote Link to comment Share on other sites More sharing options...
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