fire_lupine06 Posted May 21, 2009 Report Share Posted May 21, 2009 Okay So I had the tilt test. it was Positive ...my bp dropped and my HR went from 70 to 120 ( 50 points ) and he called today and said " yes there a mild drop in bp, and that was most likely caused by you losing weight"...what the heck...Why cant I find a doctor that knows what he is doing and can help me .... Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 21, 2009 Report Share Posted May 21, 2009 Okay So I had the tilt test. it was Positive ...my bp dropped and my HR went from 70 to 120 ( 50 points ) and he called today and said " yes there a mild drop in bp, and that was most likely caused by you losing weight"...what the heck...Why cant I find a doctor that knows what he is doing and can help me ....hi, i know how frustrating each and every test we have done is. Along with each and every visit to ER's as I just went though a frustrating experience myself. i have to think of ways to turn my anger around as it's not worth it anymore. i now make action plans. i think a good thing to ask for would be a 24 hour blood pressure cuff test and you give it it's money's worth. it's like a tilt table test on the move. i would also find out this ; where will your insurance pay for it? as all of mine have been covered when i had them outpatient at a hospital that did this procedure. recently my own cardio office got their own which was either faulty or the nurse didn't know how to use it. i wasn't charged the 1st time and sent back to the hospital. next time i noticed the #'s weren't matching my machine and we had just calibrated my machine. i noticed a bill from my insurance company saying they don't cover that service. if i get a bill, i'll discuss it and tell them i can't and won't pay. AND IN THE FUTURE send me to the hospital where this is covered.or if not if you have your own BP monitor ( I use this Omeron BP with software to print out your readings ) it has 2 modes you could use 1 mode for sitting and 2 for standing and print out the readings for each visit. I usually do standing. Sometimes the PS will request sitting, then standing, or a certain time of day . But they say send me a PDF file whenever you need to. give it a good days workout every 1/2 hour and at night also seeing that most of us don't sleep. at night they set it for every hour, but i used to hit the button when i would get up in the night as that's when i would be falling.My doc told me this was the only monitor that ran closest to true. In fact when i first started with him i had an old finger one by that co. and he said, " i don't trust finger cuffs." took my reading and he shook his head and said, "i don't believe it, but it must be the name." the thing was like 20 years old. the motor burned out in 2 months. LOL!So, you show him and i hope the weight loss was a good thing. Some docs are just jerks, we have to take our anger and turn it around lose our ego and teach them. after all, that's how they learn. I'm sorry that happened to you and now teach your doctor. next time maybe he or she might listen or treat the next person like you kinder all because of you. maybe you will have taught this doc more information. Good Luck! Blessings, BellaMia Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted May 21, 2009 Report Share Posted May 21, 2009 O.K. I promise I will quit after this. To those of us that are more "mature" (old). There was a t.v. show and as it opened there were 4 people who would say MY name is miriam poorman-knox the next one would say my name is Miriam Poorman-knox the next would say my name is Miriam Poormaan-Knox and the celebretied could ask questions and decide which they rhought was the real one.Your post makes me think we should have a link : MY DOCTOR IS AN IDIOT, then someone else says no really MY DOCTOR IS AN IDIOT.........You get it. Oh well thats all. M Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 21, 2009 Report Share Posted May 21, 2009 I thought on the TTT that your BP should go up, and your pulse? My blood pressure drops about 30-40 points and my pulse goes up by 60-70 points when I stand (and during the TTT), but that's not POTS. I've been told I have severe orthostatic hypotension, another form of dysautonomia. Perhaps that is what you have.....Jana Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 21, 2009 Author Report Share Posted May 21, 2009 My understanding is that if your HR goes up 30 points on the TTT , its pots Quote Link to comment Share on other sites More sharing options...
EarthMother Posted May 21, 2009 Report Share Posted May 21, 2009 Giggles Miriam. I DO remember that show!Best I can recall ...POTS is defined as an increase in standing pulse of 30 BPM or more (or over 120 bpm) within ten minutes of being upright.Not all orthostatic hypotension people have POTS. Sometimes the BP drops without any heart rate increase ... typically followed by a faint. POTS can have a BP increase or decrease on tilt -- or stay roughly the same. BP is not part of the criteria per se for POTS.fire_lupine, make sure you get COPIES OF THE TTT!!! You'll need the medical chart notes with the actual values and times on supine and tilt for BP and pulse rate ... and any other bodily fluid or function they collected!Don't settle for the Doctor's notes and his subjective assessment. You want the objective data for your own records.You will be able to take the positive TTT records with you as you interview NEW physicians who either know something about dysautonomia ... or who are willing to listen and help you through referals or other appropriate steps.Goodnews is you had a positive TTT, you now know why you feel like you do! Now its time to find the RIGHT Doctor to help you.Good luck! Quote Link to comment Share on other sites More sharing options...
Tammy Posted May 21, 2009 Report Share Posted May 21, 2009 I think every EP has a different look at this. My EP diagnosed me with POTS even though I had a normal TTT. He said that from all his research it is only about 85% accurate and typically has about a 15% error of both negative or positive results that are incorrect. Therefore he based it on my syptoms which point to POTS. However my general practician doctor said that he does not understand how it all works and said that since my stuff falls into speciality areas that he is unfamiliar with, there's nothing he can really do other than prescribe meds that other specialists have recommended. It has been a long road to get to this point and recall how many doctors I saw that wanted to try this or that and it always made me even worse. I finally just stopped going to them as I seemed to be going backwards from all the testing. So now as I sit here feeling very short of breath, lightheaded and so weak, I read this website and find support here instead. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 21, 2009 Author Report Share Posted May 21, 2009 Thanks for the help, all of you, its calming to know that i am not crazy and that i am right about this . Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 22, 2009 Author Report Share Posted May 22, 2009 is there any way at all my doctor is right tho? Quote Link to comment Share on other sites More sharing options...
EarthMother Posted May 22, 2009 Report Share Posted May 22, 2009 Sure thing. Weight loss CAN cause issues with orthostatic hypotension. Now ask yourself WHY did you have the weight loss in the first place! I've certainly had new doctors think it was the weight loss that caused the POTS. I'm fortunate that my current PCP has known me for 10 years and sees that my weight is actually pretty stable when I am not in a bad POTS hole. For me weight loss is one of the first signs that I am going down hill fast. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 22, 2009 Author Report Share Posted May 22, 2009 i was overeating and slowly over 2 years lost the weight . Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 22, 2009 Report Share Posted May 22, 2009 If your doctor is telling you that the heart rate increase is because you have lost weight then yes he is wrong. It is highly abnormal. Its POTS. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 22, 2009 Report Share Posted May 22, 2009 Also,If you can't have good communication with your doctor, you must find another. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted May 22, 2009 Report Share Posted May 22, 2009 I don't see what meds you are on. If you lost weight and are on certain medications it absolutely will affect your HR. I would peruse that first. M Quote Link to comment Share on other sites More sharing options...
jlmahon Posted May 22, 2009 Report Share Posted May 22, 2009 I don't remember anyone specifically telling me that losing weight can cause autonomic problems. My PCP (very intelligent) doesn't have any other patients with dysautonomia but he has a good theory. His impression is that when the autonomic system goes out of balance, it is unable to manage fluids properly. Whenever I go into a big flare, my weight drops pretty significantly in a short time. Obviously, 5 punds in a few days has got to be fluid. I remember Dr. Grubb telling me that anemia can also make dysautonomia worse. We already have problems with blood flow so the stress of low blood cells and less oxygen is a real stress. I think losing weight quickly can be a stress on the autonomic system but I don't see how it can cause autonomic problems. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 22, 2009 Author Report Share Posted May 22, 2009 I haven't taken any meds at all for years. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 22, 2009 Report Share Posted May 22, 2009 I haven't taken any meds at all for years.if you don't mind, what do you have and how bad? what do you take and how much does it cost you a month?thanks,BellaMia~ Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted May 22, 2009 Report Share Posted May 22, 2009 I lost a lot of weight (10 lbs and I only weigh 108 at my heaviest). I was 97 lbs having problems walking, short of breath, hr 188 and they told me it was deconditioning. Once I started treatment for POTS I have slowly gained my weight back. I am back at 108. I was tested for anemia tho; I had low RBC and NO iron. I also had a low hemoglobin/hemocrit. Is this POTS related? Does anyone have any info on this? I seemed to get worse with these blood counts (lower rbc etc) as my POTS symptoms got worse and were undiagnosed...But I wanted to say my cardiologist gave me a hug today.....he doesn't have all the POTS/dys answers but is committed to helping and that is soooooooooooo great!!Erika Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 22, 2009 Author Report Share Posted May 22, 2009 besides prolly having pots i dont have anything else that I know of..and in 2 years i went from 300 to 200...so its not like i am underweight or anything ... Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 23, 2009 Report Share Posted May 23, 2009 besides prolly having pots i dont have anything else that I know of..and in 2 years i went from 300 to 200...so its not like i am underweight or anything ...so is this a self dx. and you don't take natural remedies or treatments? because you know what will happen to your heart if you really have pots and it's left untreated? Quote Link to comment Share on other sites More sharing options...
EarthMother Posted May 23, 2009 Report Share Posted May 23, 2009 so is this a self dx. and you don't take natural remedies or treatments? because you know what will happen to your heart if you really have pots and it's left untreated?I can hear that you are reaching out and trying to help a fellow traveler here. But a gentle reminder, that not all of us are able to see POTS specialists. Nor have we found any natural remedies or medical treatments that seem to help our situation despite our best efforts. It was my understanding that unless someone has an underlying heart condition, I am not aware of any damage that can occur to a healthy heart by way of POTS. ~EM Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 23, 2009 Author Report Share Posted May 23, 2009 No its not a self DX...on my TTT my heart rate went from 70 to 120 ....the doctor didnt seem to care that the TTT showed it, I doubt he even knows what pots is . Quote Link to comment Share on other sites More sharing options...
vemee Posted May 23, 2009 Report Share Posted May 23, 2009 I had a tilt table test at the local medical college and even though my heart rate went up more than 40 points the doctor said I didn't have pots because my bp did not change. He said my heart rate was from being overweight; I had gained over 50 pounds the year my pots got severe. He was almost mocking me at the time for thinking there was something wrong with me. Later he told my work there was no biological reason I should be out of work ( I was a professional firefighter) except that I was fat. Obviously he is an idiot, and I had to go to Cleveland Clinic to get an accurate diagnosis. The moral of the story is that doctors use weight as an easy excuse to get out of looking for the real cause of symptoms. I read an article about a pots patient that developed takotusubo cardiomyopathy Takosubo cardiomyopathy in a patient with postural tachycardia syndrome The article is just a report on a single case and does not prove a link but it suggests that the issue needs to be studied to see if pots predisposes patients to this type of cardiomyopathy. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted May 23, 2009 Author Report Share Posted May 23, 2009 Thanks, the reason I say this isnt a self dx, is cause of the positive tilt test results. And I think the cardio doc seen there really wasnt he could do for me (Ieheart surgery ) or he just didnt know what pots was , granted its not a common thing , esp in males.My bp didnt really drop but at one point it was 135/40 which is on the odd side . During the tilt test , my hands started going blue from the blood in them,my head was throbbing, I had chest pain, shoulder pain, and I started to have an aura to my vision. Quote Link to comment Share on other sites More sharing options...
Brye Posted May 24, 2009 Report Share Posted May 24, 2009 I've been having a terrible time finding a doctor who is willing to treat my P.O.T.S. They made a fairly quick diagnosis and seemed very proud of themselves but now don't seem to know the best treatment to control my symptoms. I finally found a great E.P. doctor who was willing to try to help and he retired in January. I think my favorite quote from one of my cardiologists was "people your age (36) don't die from heart rates in the 30's" Do they pass out from heart rates that low because if you can fix that problem for me I promise I won't be back. My new E.P. doctor I don't think knows how to treat P.O.T.S. and doesn't have the time to figure it out. My other favorite quote was "I can put a pacemaker in if you want" If I want??? Who wants one of those? If it will help sign me up!! There are no specialists in my area (Arkansas) but I was wondering if anyone has any input on any of the Milwaukee area specialists. I grew up in that area and that would be a convenient place for me to travel. This is my 1st post on this site but I have been reading them for the past few months and have gotten some great advice!! THANKS TO ALL!!Brye Quote Link to comment Share on other sites More sharing options...
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