fire_lupine06 Posted June 4, 2009 Report Share Posted June 4, 2009 Okay...I'm pretty sure I have POTS...as a Tilt Test Confirmed I did...but the Cardiologist overseeing me said it was all due to me losing weight ...Anyhow I suspect one of the reasons I was brushed off was because I dont have insurance or the cash to pay up.So this being my case , how do I find a doctor that would treat me or do I have to suffer with this condition without meds ?Just to restate my symptoms :Pvc's when I lay downDizziness when I stand from laying Blacked out a few times in the last year ( 6 times or so ) Nausea esp after I eat Hands go blue if I stand stillBlood Pooling in my legs. Low Energy Brain Fog Some Tremors in my arm if I get overly StimulatedLow tolerance to stimuli.On the TTT my HR spiked at 130 and stayed around 125...my supine pulse was 65-70, my bp well it didnt drop but at one point it was 110/40 . Any Advice would be big help to me . Quote Link to comment Share on other sites More sharing options...
maggie Posted June 4, 2009 Report Share Posted June 4, 2009 I was dx in oct 06 with pots, my heart rate went over 170 in 6 min on ttt. Since then I have been dx with a liver enzyme problem and can not take any of the meds that they usually give patients with pots. I am living with this disorder without meds due to the fact of my liver so it is possible to get through it. Although every person has different issues. I am able to use xanax to help me sleep and if I need it during the day to calm my adrenal glands. I also have found and herbal to help with my adrenal glands as well. I wear a polar heart monitor all the time when I'm up moving around to keep track of my heart rate. When it gets too high I sit down and put my legs up so that my heart rate goes down and when I have let it settle for some time I am able to get back up and walk around some more. The neurologist I see doesn't take my insurance so he has reduced the price for me, but really all he does is monitor me and I only see him twice a year. Hope you can find a solution to your isssues.Maggie Quote Link to comment Share on other sites More sharing options...
EarthMother Posted June 4, 2009 Report Share Posted June 4, 2009 Wow. Tough situation. First things first. Don't feel hopeless about what you can't do medically at the moment. Lots of us with access to meds and specialists found the prescribed treatments did not help much in instead we rely on self-help measures like support garments, high salt and others on the list provided on this website.Next, see what you can do by way of getting insurance. Do you qualify for medicare? or other program in your country? Meanwhile continue to knock on Doctor's doors in your area who will agree to see you given your financial constraints. If you find one who is willing to learn about POTS alongside you, then she/he may be able to help figure out ways to manage the cost of some of the meds. My memory is that betablockers as a drug class is not very expensive (unlike the $240 antibiotic my son was prescribed last month geez!) But betablockers don't work for all POTS patients. So keep calling around and don't give up until you find a physician or clinic who will work with you.Good thoughts your way. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 4, 2009 Report Share Posted June 4, 2009 I hope that you can find assistance. Check with your state and local governments to see what aid can be provided. Also, sometimes drug companies can make drugs available at no cost to people in dire straits.Beta blockers are not expensive. I believe there is a generic for proamatine that is not that expensive. I also take zoloft for POTS. That is also available as a generic.Perhaps if you can try some of the generics you may feel better and find that you can do some things to improve the quality of your life.Good luck and please take care of yourself.Lois Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 4, 2009 Report Share Posted June 4, 2009 Wow. Tough situation. First things first. Don't feel hopeless about what you can't do medically at the moment. Lots of us with access to meds and specialists found the prescribed treatments did not help much in instead we rely on self-help measures like support garments, high salt and others on the list provided on this website.So sorry, although I certainly went to my share of unhelpful doctors before I got a referral to an autonomic specialist. Still, normal POTS meds haven't helped me, and in some cases made me worse. It's been suggested to me to try mestinon, but we're trying to conceive so that's out. Keep trying to find someone helpful... are you close to any of the specialists on the dinet or ndrf lists? For me, it was worth the expense of seeing a specialist because their diagnosis makes my disability claim more valid, and reassured my hubby and I that there's someone out there who's seen people like me before. Either way, my best helpers so far have been my $30 abdominal and leg compression garments, salt and fluids! Quote Link to comment Share on other sites More sharing options...
Tammy Posted June 4, 2009 Report Share Posted June 4, 2009 For the tremors and low tolerance to stimuli, a beta blocker does help but it takes a while to get your body use to it and also if they were to prescribe a normal dose, take about 1/4 of that amount for the first week or two and SLOWLY move your way up. You may still find that 1/2 of the dose that your doctor recommends will work for you but give it time. I had written off BB for years as I couldn't tolerate them, then, finally I figured out that I needed a much much much smaller dose at first and than my body slowly tolerated the Atenolol. As for cost, I get 30 pills for $4. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted June 4, 2009 Author Report Share Posted June 4, 2009 Thanks for the help...the issue of generics is that I need a doctor to actually DX me with POTS to get them. The TTT showed my HR jumped points and to confirm pots the min is 30 points correct ?Thanks again.I also have hanger pains, headaches, and that too. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 4, 2009 Report Share Posted June 4, 2009 Thanks for the help...the issue of generics is that I need a doctor to actually DX me with POTS to get them. The TTT showed my HR jumped points and to confirm pots the min is 30 points correct ?Yes, I believe you have to have a sustained increase in HR of 30 or more beats per minute, or 120 beats per minute or more. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted June 4, 2009 Author Report Share Posted June 4, 2009 Thanks...mine had 130 and stayed there for at least ten minutes during my TTT...my hands and feet turned blue ... Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 So can I ask...is it a pretty certain thing that i have POTS? Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 5, 2009 Report Share Posted June 5, 2009 Based on your ttt results, it certainly sounds like you have POTS. To be diagnosed with POTS you have to have a sustained increase of 30bpm or more upon standing, which you more than had. There are plenty of articles that support this. If you are interested, here are two:General Information Brochure on Orthostatic Intolerance and Its TreatmentPostural Tachycardia Syndrome by Dr. Blair GrubbI hope you can find a doctor who is willing to work with you and treat you for POTS.Rachel Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 Thanks for the help. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2009 Report Share Posted June 5, 2009 or do I have to suffer with this condition without medsThere are doctors/ POTS specialists that believe that medication actually stops the body from re-adjusting to POTS and therefore could prolong the condition. I myself have never been able to tolerate any medication other than beta blockers, and even then I get dizzier from them but they cut out the other sympo symptoms. Quote Link to comment Share on other sites More sharing options...
fire_lupine06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 The most worrisome one for me...is the pvcs i get whenever i lay down >< Quote Link to comment Share on other sites More sharing options...
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