mkgirl01 Posted September 9, 2013 Report Share Posted September 9, 2013 i have not been diagnosed with pots as of now.... i have actually been diagnosed with anxiety but the more i read and hear peoples stories the more i think and worry i have pots to the point where i think about it always and i cry about it.....can anyone give me guidance i know i have been told by some people to get a tilt table test but that is not a reality for me right now with insurance and all Quote Link to comment Share on other sites More sharing options...
lejones1 Posted September 9, 2013 Report Share Posted September 9, 2013 Unfortunately a TTT is the gold standard diagnosis for POTS and without one, it will be difficult to get a diagnosis. Have you been able to find a doctor to discuss this with, to see if they think it may fit your symptoms? Can you find a doctor to give you a poor man's TTT (just standing in office)? Here is a physician list: http://www.dinet.org/physicians.htm Or you can post your location on here, and maybe people can give you recommendations within your state.Regardless of whether you have POTS, another undiagnosed condition, or if it is really anxiety, it can only help you to find an outlet to deal with these fears. Would it be possible for you to start seeing a therapist? Or do you have a close friend or family member that you trust, who you can discuss your fears with? I've dealt with periods of anxiety and sadness since getting POTS, and I've found it's very helpful to be able to sort out the irrational fears from the genuine concerns that can be addressed. Getting caught in a cycle of fear and sadness will only make you feel worse, emotionally and physically. I'm not at all suggesting you just snap out of it because I know it's not that simple - but maybe you can reach out to someone who can help you work on your fears. You may also consider trying meditation and deep breathing. If you look on YouTube, there are some wonderful guided meditations. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 9, 2013 Author Report Share Posted September 9, 2013 thank you and im in the pittsuburgh pa area... and i do have a pretty good pcp but i have not talked to him about this yet..... Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 9, 2013 Report Share Posted September 9, 2013 I got diagnosed with pots without a ttt. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 how? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 I was admitted to the hospital after having some nutmeg ( nutmeg should be in the dinet list of what NOT to consume ) and I old the doc all of my symptoms and he saw that when I stood up, my beats went up +30 and he agreed it was pots. He said he wouldn't change the diagnoses even if I failed the ttt. He said I had pots and some parasympathetic something something.. lol Dont be sad. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 And I also told him and all the other doctors that I thought I had pots but had not been officially diagnosed with it. Then he said, yes you do havepots. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 im sad im so scared like im only 20 ill be 21 tomorrow im not excited for my birthday... i wanna have my normal life back!!! i wanna be okay and not worry i feel like my life is over and ill never get better like i cant be normal Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 10, 2013 Report Share Posted September 10, 2013 And I also told him and all the other doctors that I thought I had pots but had not been officially diagnosed with it. Then he said, yes you do havepots.HANICE- you should get a TTT. I've never heard of anyone being diagnosed with POTS without a tilt table. I don't want you to miss some other problem. The pots diagnosis is somewhat a diagnosis of exclusion.I'm not saying that you don't have pots. It's just unheard of to be "diagnosed" without a tilt table. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 I was 24/25 when I got pots and now Im 26. The important thing is to not let the feeling of healplessness overwhelm you. Just know that you're healthy and young. Pots doesnt mean unhealthy, it just means out-of-whack.And for the ttt. A ttt from my knowlege doesn't really fiagnose anything, its just a table. Tables dont talk! Lmao. Jk. I am not sure a ttt is in my horizons either. My doctor doesnt seem to think I need one, since my symptoms where obvious to him. What else can the ttt tel the doctor that I cant with a chart I make myself at home with my sitting and standing bp and bpm? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 Oh and also tomorrow is my abdominal and pelvic mri. Fingers crossed! Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 good luck!! and thanks i wanna live a normal life...are you able to have children with pots? Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 10, 2013 Report Share Posted September 10, 2013 I was 24/25 when I got pots and now Im 26. The important thing is to not let the feeling of healplessness overwhelm you. Just know that you're healthy and young. Pots doesnt mean unhealthy, it just means out-of-whack.And for the ttt. A ttt from my knowlege doesn't really fiagnose anything, its just a table. Tables dont talk! Lmao. Jk. I am not sure a ttt is in my horizons either. My doctor doesnt seem to think I need one, since my symptoms where obvious to him. What else can the ttt tel the doctor that I cant with a chart I make myself at home with my sitting and standing bp and bpm?It actually is really different. A poor man's tilt can point you in the right direction. You could possibly miss another problem. POTS is considered a "difficult diagnosis" . Getting diagnosed was a process. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 I got pots after having my second child. I had them back to back though. They are a week away from being a year apart. You WILL see improvement and hopefully and most likey a dissapearance of your pots. Their is nothing good that comes from stressing. Just take it a step at a time and try not to pass out when you stand up. Lol. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 thank you for helping me be positive..... can you have children tho if you already have pots Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 10, 2013 Report Share Posted September 10, 2013 My sister was diagnosed w POTS without a TTT. In her case her symptoms were rather mild and she was familiar with the condition b/c I had already been diagnosed. She saw and EP who did a poor man's tilt and diagnosed her. I agree tho that this is probably unusual and I think if symptoms are quite severe especially a doctor would want the data that could be obtained from a TTT.mkgirl--yes many members of DINET, diagnosed with POTS, have had children. Some find their symptoms improve during pregnancy. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 And some worsten during pregnancy aswell and especially after. Pregnancy is really difficult and takes the breathe out of a healthy woman. I would love to have more babies but wouldn't dare anymore. Although, if I were in your (probable) position of not having kids already (?) I wouldn't care, because before I had my kids I felt a hole in my soul. They completed it and made me whole. I always wanted to be a mommy. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 But seriously, pregnancy with pots would scare me. And if you have eds even more so. Durning the last few weeks of pregnancy your body releases a hormone called Relaxin. This hormone relaxes all your joints to help you open everything up to ready you for the babies' arrival.When I got hit with that little miracle hormone, my pelvis was out of place and click clacking. This lasted for 6 months after his birth. It hurt SO much! Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 No I do not have kids and I'd love to be a mom but now I'm not so sure.... Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 Adoption is a beautiful option. If I ever recover from pots I will try to adopt one or two little ones. I LOVE kids and I KNOW I can love another kid just the same as if it came out of my body. Family is not always necessarily blood. Quote Link to comment Share on other sites More sharing options...
mkgirl01 Posted September 10, 2013 Author Report Share Posted September 10, 2013 What would happen if I had my own children??? My boyfriend and I really wanna have our own kids Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 10, 2013 Report Share Posted September 10, 2013 That's your own choice Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 10, 2013 Report Share Posted September 10, 2013 I have been diagnosed with pots by a cardiologist and double checked with a second ttt by a pots neuro. I have been diagnosed with eds by one of the top genetics eds experts in the country (world actually). I have been diagnosed with mcas by a well respected immunologist. I belong to forums for all three syndromes. All of my docs are fine with me attempting to have children should I decide to do that and I have read countless stories on the forums of women having healthy babies and not put themselves in harms way doing it. I think we should remember that there is never a way to foresee how a pregnancy will go for anyone, healthy or diagnosed with any illness.Mkgirl- if you have a good relationship with your pcp and insurance is otherwise an issue, why don't you print some information regarding pots and take it to your pcp. Tell him that you feel like the anxiety diagnosis may not be right and that your body is telling you it's not the right answer. Ask him if he will help you at least rule pots in or out. You're going to have to get someone in the medical community to diagnose you. We can give moral support, but what you need is diagnosis and treatment to get you on a better path. Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 10, 2013 Report Share Posted September 10, 2013 I had two healthy children with Pots. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 10, 2013 Report Share Posted September 10, 2013 I've always wanted children. This was one of my biggest fears when being diagnosed with hyper pots.. But, My doctors have told me not to make pregnancy part of my 5 year plan...which Is their opinion and not their decision. We've been very clear about this. Hang in there MK girl... Talk to your doctor about all of this like Katy suggested. Quote Link to comment Share on other sites More sharing options...
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