bellaluna Posted January 26, 2008 Report Share Posted January 26, 2008 Hello all. I am so glad to have found this board, and people who can understand what I am going through! I have not been officially diagnosed yet (because my doctor is a bonehead), but I strongly suspect that I have POTS. I began passing out and having "episodes" in mid-September of 2007. Since then, my condition has worsened, and now includes extreme fatigue, weakness, dizziness, tachycardia, flushing, insomnia, feeling cold but being very sensitive to getting too hot also, and hair loss. I haven't been actually passing out as much, but do still have the "almost passing out" feeling where I need to sit or lie down right away. I have some good days where I almost feel normal, but the bad days are SO bad...My doc had me go in for a tilt table test, and this is the part that I'm not sure about... I did have the 30+ bpm increase, but it was within like 15 minutes and not the 10 that I've read is the standard... is there such a thing as delayed POTS? Or can this still be considered POTS? How hard and fast is that 10 minute rule? Also, when the 2nd part of the test was done (where they give you the adrenaline stuff), my heartrate skyrocketed within the first 5 minutes and I became very ill, so ill in fact that the tech ended the test early. According to my doctor, this is a normal test result (really?), and when I suggested POTS, he said that "POTS is an emotional disorder". I told you he was a bonehead. I'm currently seeing a new neurologist, actually just started seeing her. I went in today for an MRI, which I'm sure won't show much, but I'll jump through the hoops if I have to. She has admitted that she does not know anything about POTS, but I think she is more open to referring me to a POTS specialist than the old doc would have been (he just basically dismissed me as being crazy, although he did prescribe Atenolol at my insistence that it was POTS, which seems to be helping, so I guess I have to thank him for that)...Any info that any of you can share is greatly appreciated. I guess I'm basically just looking for reassurance that what I'm experiencing is real, and that I'm not just crazy, as everyone around me, who've never gone through anything like this, seems to think.**Sorry, I forgot one question, so I'm editing my original post- does anyone know why I would have had such a strong reaction to the artificial adrenaline stuff during the tilt table test? Is this a POTS-type thing?Mary Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 26, 2008 Report Share Posted January 26, 2008 Hi,Welcome aboard.No, you are not crazy. You have just met God!Or someone who believes he is god. There are many doctors like him, that when he does not know what the patient has diagnoses her with a psychiatric disorder.You can check the different links belows to reassure yourself:Overview of POTShttp://www.dinet.org/pots_an_overview.htmSymptomshttp://www.dinet.org/symptoms.htmMechanisms (what is happening with your body while you're symptomatic)http://www.dinet.org/what_are_the_mechanisms_of_POTS.htmCauses of POTShttp://www.dinet.org/what_causes_pots.htmDetection of POTS and other autonomic dysfuctionshttp://www.dinet.org/how_is_pots_detected.htmTreatments (what helps)http://www.dinet.org/what_helps.htmWhat to Avoid (what makes things worse)http://www.dinet.org/what_to_avoid.htmMythshttp://www.dinet.org/myths.htmWhat does the research have to sayhttp://www.dinet.org/research.htmRelated linkshttp://www.dinet.org/links.htm Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 26, 2008 Report Share Posted January 26, 2008 Delayed forms of orthostatic intolerance have been observed in POTS patients. Some physicians believe POTS symptoms should occur within 10 minutes of standing. However, studies on orthostatic intolerant patients prove that some display a delayed form of orthostatic intolerance in which orthostatic hypotension occurs after ten minutes of standing (Streeten & Anderson, 1992). One study showed that out of 23 chronic fatigue patients, 17 had orthostatic tachycardia alone during the initial period of head-up tilt. However, 22 eventually had obvious orthostatic hypotension after an extended period of time (Bou-Holaigah, Rowe, Kan & Calkins, 1995).that is from the link from ErineMechanisms (what is happening with your body while you're symptomatic)http://www.dinet.org/what_are_the_mechanisms_of_POTS.htmthat med they give you is supposed to raise your BP and they watch how your body responds to it. I find it hard to believe being very ill is normal. I'm guessing he means your HR response was normal. (do you have the report?) My HR-for example dropped which is a neurocardiogenic response. Since I have neurocardiogenic syncope I am not well versed in POTS.Wanted to say Hi tho and add what I could.Hi bellaluna Quote Link to comment Share on other sites More sharing options...
bellaluna Posted January 26, 2008 Author Report Share Posted January 26, 2008 Thank you both for the information and the welcome! Pat- thank you for explaining... as far as the reaction after the medicine in the tilt table test, not only did my bp increase but my heart rate went through the roof. No, I'm pretty sure it was not a "normal" response, but to be completely honest, I don't think my doc even looked at the test until I was sitting in his office asking him why he said it was "normal", when I clearly had tachycardia, nausea, shakiness (my legs were shaking almost uncontrollably), dizziness and flushing... I think I caught him off guard, and my doc is kind of a jerk anyway... which leads me to your response Ernie- I had to laugh when you said "you met God"... it is really kind of true because my doc is the kind of person who thinks that because HE'S the doctor, his opinions are the only ones that count. He's very full of himself. I'm glad I've found a new doc, hopefully I'll be able to make more progress towards a diagnosis and getting better. Thanks again to you both.Mary Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 26, 2008 Report Share Posted January 26, 2008 Welcome, Mary!Probably about 90 percent of us (at least) have been tagged as just plain crazy in the past, so you're in good company!Welcome aboard!Amy Quote Link to comment Share on other sites More sharing options...
sally Posted January 26, 2008 Report Share Posted January 26, 2008 Just wanted to say Hi.Hope your new physician gets to the bottom of what's going on. That other doctor that said Pots was an emotional disorder really needs to be educated on dysautonomia. I also feel badly for the other patients he has probably said this to that believed him and didn't look further for answers. Good luck and hope you find answers soon. Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted January 26, 2008 Report Share Posted January 26, 2008 Hello and welcome!!!! I hope you can get diagnosed soon and have some reassurance that you do have a real condition, whether or not it turns out be POTS, or a different form of Dysuatonomia, maybe you have NCS or NMH, it is still good to have a diagnosis so you can properly treat it, good luck!Mary (my name is Mary too! ) Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 27, 2008 Report Share Posted January 27, 2008 Hi!Welcome to the board! Quote Link to comment Share on other sites More sharing options...
bellaluna Posted January 28, 2008 Author Report Share Posted January 28, 2008 Thank you all for the welcome- I'm looking forward to learning a lot from all of you!Mary Quote Link to comment Share on other sites More sharing options...
maryfw Posted January 28, 2008 Report Share Posted January 28, 2008 I wonder why the doc bothered with the test in the first place is POTS is an "emotional disorder".mary Quote Link to comment Share on other sites More sharing options...
bellaluna Posted January 29, 2008 Author Report Share Posted January 29, 2008 I wonder why the doc bothered with the test in the first place is POTS is an "emotional disorder".maryHe was originally looking for the cause of my syncope. But I didn't pass out during the test, so he was insistent that it was a normal result. When he actually looked at it, at my insistence, I think he realized that it wasn't normal, but it wasn't something he was familiar with. I think he was just trying to cover his butt because I was asking questions he couldn't answer. Apparently, a lot of people who suffer from unfamiliar disorders get this type of treatment, which is sad. I actually started to cry after he left the room because I was so upset that he was dismissing me as just being crazy... but my husband put things back into perspective for me. He said "so what if he thinks you're crazy. We can always find another doctor, and if we have to, another one after that, and another one after that". Mary Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 30, 2008 Report Share Posted January 30, 2008 Hi Mary,Welcome to the forum. I'm glad you found us.POTS certainly is not an emotional disorder! I hope you can find a doctor who is willing and able to treat your dysautonomia.Rachel Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted January 30, 2008 Report Share Posted January 30, 2008 Mary-When I had my tilt table, I didn't pass out either. The cardiologist who did it first said that I'm just out of shape, that's why my blood pressure dropped out!! I hope you find a sympathetic doctor. They are out there, but are few and far between. I've got new doctors now who finally get it. It took about 2 years, but keep looking. With this condition you need a good team behind you. Best of luck!Sara Quote Link to comment Share on other sites More sharing options...
bellaluna Posted January 31, 2008 Author Report Share Posted January 31, 2008 Mary-When I had my tilt table, I didn't pass out either. The cardiologist who did it first said that I'm just out of shape, that's why my blood pressure dropped out!! I hope you find a sympathetic doctor. They are out there, but are few and far between. I've got new doctors now who finally get it. It took about 2 years, but keep looking. With this condition you need a good team behind you. Best of luck!SaraOh no. Now I'm afraid that I will get the same answer. Yes, I'm kind of fluffy, and probably out of shape, but that ISN'T what is causing this. It is just so frustrating that we have to bend over backwards to prove to our doctors that we are actually ill... seems unfair.Anyway, thanks for the info and the well wishes!Mary Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 31, 2008 Report Share Posted January 31, 2008 OMG you made me laugh calling yourself "fluffy"--I love that comedian who does his "I'm not fat, I'm fluffy" routine.No, POTS is not an emotional disorder BUT doctors who play the blame the patient game can give you enough stress that it makes you feel like you have an emotional disorder. Nina Quote Link to comment Share on other sites More sharing options...
bellaluna Posted January 31, 2008 Author Report Share Posted January 31, 2008 OMG you made me laugh calling yourself "fluffy"--I love that comedian who does his "I'm not fat, I'm fluffy" routine.No, POTS is not an emotional disorder BUT doctors who play the blame the patient game can give you enough stress that it makes you feel like you have an emotional disorder. NinaYeah, I prefer "fluffy" to "side of a bus"... tee hee Mary Quote Link to comment Share on other sites More sharing options...
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