diamondcut Posted June 8, 2012 Report Share Posted June 8, 2012 (edited) Hello All I am afraid i am going to have to rant a bit here so be prepared! But i am a bit upset after doing nearly 2 months of research and coming on here and learning so much from you all, i feel this is the best place to ask. I have been with my Pots doctor for about 8 months now. I had a very disappointing consultation, I began by very politely asking if i could show him some of my hand written notes and observations on how my Pots has been going over the last couple of months. On my notes were 5 drugs i had thoroughly read up on and asked you guys about taking in with me to find out his opinion. As soon as he looked at my list of EPO,LDN,Lexapro, Paxil, Zoloft, Wellbutrin, he straight away ruled out EPO because i am "not anemic", but hang on i thought it did not matter if your were not deficient in Iron? From what i have read people who have not tolerated meds can see improve on this with volume expanding to the blood and having a dual vasoconstricting effect? I have Low BP and EDS you see!!! He then said to me one by one, what is Lexapro? what is Wellbutrin....What is LDN? I mean this man is known for treating Parkinsons desease and he didnt know what LDN was? When he realized he then went on to say..."oh well there is no scientific proof that this could help Pots patients". But surely many of the drugs we try have not been clinically approved for people with Pots anyway. Even Midodrine is not licensed for Pots in the UK and probably never will be, yet we are prepared to take it. So after knocking all my suggestions down, mostly down to the fact he didn't know what they are we moved onto my main issue which is a very fast heart rate. I have told him and told him Beta Blockers will kill me if i so much as touch them again. I tried them 6 months ago and had a terrible reaction to them and even to this day now my heart has never been quite the same. I know this because i know my own body. He pushed for me to try a more specific BB and i refused. He then offered Moxonodine at a push, but i had to stand my ground. I then made the mistake of saying "I believe i can come under both the PD AND HYPER POTS GROUPS. This explains why i CANT take beta blockers. Now this is the golden line he then said to me.... "It doesn't matter what group we put you into, we can call it whatever, we could call it the Jon Doe disease group, or the Doctor X disease group, it doesn't matter." I am know thoroughly disgusted that this doctor is not keeping up to date with new treatments and advances, it seems he is only prepared to prescribe medicines that he has conducted his own thesis and clinical trials on. Thats fine but so far 5 different meds have not helped me one bit from him. I may not be an easy case to treat, but really are any of us? I feel like i have come to the end of the road with this person, which is sad because i did respect him, but the cherry on the cake was although he dismissed my notes at the end of the consultation, once i had paid him cash there and then, he said as i got up to leave.. "Do you think i could keep these notes you have made?!" LOL he is going to just google them!!!!!!!!! I mean please!!!!!!!! I just paid to educated a so called expert, whose answers to all my suggestions were, "well the Americans are very gung ho!!!" Sorry i don't mean to insult you guys, in fact YOU ARE the future for treating pots NOT the UK.... So advice would be nice please guys.. Should i go and see a top Cardio if my heart rate is the main issue now? Edited June 9, 2012 by corina Quote Link to comment Share on other sites More sharing options...
corina Posted June 9, 2012 Report Share Posted June 9, 2012 Hi Diamondcut, I'm very sorry you had such a negative consultation. I'm in The Netherlands and I have to admit that my ANS doctor was difficult to work with after we found out that everything he thought could help didn't work for me. He basically told me to go home and live with it. As I got worse over time I went back to him and told him that I needed someone to take responsibility for my illness and that HE was the one (most knowledgeable). We now work together very well, he listens and takes what I come up with into consideration and that really works for both of us.I think European doctors can be a bit arrogant towards their American colleques. I wish they would work together and learn from eachother.An option for you could be to see dr Glyn Thomas who is a cardiologist and electrophysiologist at the Bristol Heart Institute. He knows about POTS and seems very empathic. Quote Link to comment Share on other sites More sharing options...
Soap Posted June 11, 2012 Report Share Posted June 11, 2012 Visit the Stars website (and become a member) and you can find there a list of dysautomnia-friendly doctors. Or if you cannot find it, ask the Stars people, they are super helpful and friendly.http://www.stars.org.uk/ Quote Link to comment Share on other sites More sharing options...
anna Posted June 11, 2012 Report Share Posted June 11, 2012 I think you might be in the same boat if you go to see a cardio if they are not totally ANS Dysfunction savvy. I think the UK medics do tend to be a bit more let's say 'careful' when scripting off label. My kids Cardio did mention that Glyn Thomas was seeing quite a few dysautomia and EDS patients so my guess is he might be of some help.Would you be ok PMing me the name of the Dr. you mentioned. Quote Link to comment Share on other sites More sharing options...
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