Appointment with Cardiologist

[Mrs. Glass]

I saw my Cardiologist yesterday, and after sitting in his waiting room for almost an hour and in the exam room for two hours, it was such a waste of time. Every time that I think that he is finally going to start to do something to really help me, he pulls one of these duhs!!! My b/p was extremely low and my pulse was very weak, and he had the gall to ask me if my b/p was this low before I had back surgery. I have been going to this doctor for almost a year now and it has always been low. He is the one that ran all of the tests and put me on all of the meds. He put me back on Florinef which is scary in itself, because I had the stroke after he put me on it the last time. And then after I told him that I was scared to go back on it, he said that he shouldnt have raised the dosage so fast, and that he shouldnt have just told me to stop it, he should have tapered me off of it. I just wanted to scream, but of course all I could do was to cry. It was like " uh, have I seen you before"? And also I asked him if my continued extremely low b/p was doing any damage to my heart or brain, he just danced around the question, and never really answered it. He just started explaining how some peoples bodies are geared for low b/p and some are not, and evidently mine was not, or I would not be feeling the way that I do. It was like he knows the answer and will not tell me. I just want to be told the truth. I started to ask him if he was on drugs or something. I mean he was the one that gave me the horrible prognosis for my life, and now he wont even tell me if my vital organs are being damaged or not. Get real this is my life, what is left of it. Well my husband called me on my cell just to see how close to home that we were, and I told him that I barely got out from seeing the doctor,and told him what was going on, and my husband blew, he insisted that I get ahold of Vanderbilt and beg if I had to, just so I can get competent doctors to help me. I hate it when my husband blows up, it is so unlike him. Before I got sick, nothing ever made him get mad, and now look out docs because here he comes. Thanks for letting me vent it was a very frustrating day,and I really got no answers at all. I am scared to take the Florinef, because of the last time that I took it, but I am going to keep closer check on my b/p this time, and I have read up on Florinef, and I know how to take it now, which I did not before, and the doctor failed to tell me. Wish me luck on getting in at Vanderbilt, they are my only hope right now. Vanessa

[ben_uk]

Hi Vanessa

I totally identify with how you have been treated by these lousy doctors.

In my experience, doctors have rarely given me a straight answer.

It sounds like your Cardiologist is well out of his depths in the treatment of dysautonomia.

In addition, isn't it common sense to gradually increase dosage in the beginning and gradually decrease it when coming off it? Even I know that. It is common sense. He sounds like a complete idiot.

You really need to see competent people - phone the place you mentioned (begins with Vand...), speak to your family doctor and really try to get them to see you. Failing that, can you go somewhere else?

I also haven't had a clear answer on how the BP drops can affect your heart brain. One neurologist said it "can" cause damage, but I guess this is over a very long period of time and who knows how much damage is caused.

Hopefully the Florinef will work for you but - as you said - it is important to take things slowly, particularly as our bodies are so sensitive.

Good luck with everything - hope you get to see a good doctor.

By the way, when you feel like your BP is low, do you do counter manouvres like putting your head in between your legs whilst sitting. That is what my neuro said to do.

Take care

Ben

[Mrs. Glass]

Hi Ben

Thanks for responding. I agree with you some doctors are idiots. If they dont know how to treat a patient then they just should refer them to someone who knows. I have just finished typing a letter to Vanderbilt University Medical Center begging them for help. I am getting all of the forms filled out to fax to them. My b/p has been dropping dangerously low for over a year that I know of. Maybe longer. my memory is not what it used to be,and I get confused very easily. I thought that my Cardiologist was a good doctor until yesterday. He acted like this was my first visit or something.I know being on the florinef I am going to take it slowly, I dont want to have another stroke. I got lucky on the last one it was just minor. The next one could be worse. I really dont think that he knows how to administer the florinef, because when he first put me on it he did not tell me that you had to take in extra water, and he just told me that the salt was to help raise my b/p. I found out on the internet after I had stopped taking it. I just hope these doctors dont end up killing or crippling me trying to help me. Some times I think that their egos get in the way of their patients best interest. When my b/p is low the only way that helps is for me to lie down. I have tried putting my head between my knees and I feel like I am going to pass out. Hopefully I can get into see someone who knows what they are doing, because this is getting very old and expensive. The new year is upon us and that means that I will have a deductible and have to pay 20% until I get my out of pocket expenses paid for the year. Last year it only took 2 months. But the medical bills are outrageous. I will be paying on them forever. Thanks for responding. Vanessa

Edited December 23, 2005 by Sunfish

[ben_uk]

I am pleased you will be taking things slowly. If you find it hard to get into the university, keep trying and pushing for it (or a viable alternative).

I also get confused when my BP is low (in addition to lots of other symptoms). My neuro told me to eat lots of salt and drink lots of fluids. I do have lots of salt but it doesn't seem to help. Oh well, maybe I will have a few more bags of crisps a day!

Best of luck with it all - I sincerely hope you get the treatement and care that you deserve.

Do you do any forms of gentle exercise like Yoga? Some of the postures are good for getting blood to the head but for me the effects do not last very long. Maybe worth a try with an experienced teacher who understands the condition and who will go very easy on you (my teacher, even though experienced, gave me an exercise that made me worse, so be cautious!)

Best wishes

Ben

[Guest Belinda]

MRS Glass- Do you know of any electrophysiologists in your area? I have found that they tend to know a little more about dysautonomias since their specialty is the electrical system of the heart.

I am just recently seeing one now and he was the most valuable to me.

I am starting the florinef at the right dosages-and now I understand why the dosaging seemed so whacky in the beginning.

It sounds to me like your cardiologist definitley should not be treating you for this..in the meantime try and keep your head up and look in the electrophysiologist deal.

Good Luck I hope oyu get into Vanderbilt soon.(((HUGS TO YOU)). Belinda

[michiganjan]

Dear Mrs.Glass,

Well, that was certainly an unsatisfactory visit with the cardiologist! I do hope you can get into Vanderbilt. Or somewhere else where they better understand how to help you.

Unfortunately, when you have something that is not well understood, you must become your own advocate and search and not give up until you find the help you need. You are on the right track.

There may be other places that might be able to help you closer to home and sooner. Did you check the doctor information page that can be accessed from the DINET home page?

I share your frustration and can only say, there are doctors available who can help and just hang on until you find the right one to help you.

[Mrs. Glass]

havent tried yoga yet. My therapist suggested it but wants to wait until i get some strength back. Thanks Vanessa

I am pleased you will be taking things slowly. If you find it hard to get into the university, keep trying and pushing for it (or a viable alternative).

I also get confused when my BP is low (in addition to lots of other symptoms). My neuro told me to eat lots of salt and drink lots of fluids. I do have lots of salt but it doesn't seem to help. Oh well, maybe I will have a few more bags of crisps a day!

Best of luck with it all - I sincerely hope you get the treatement and care that you deserve.

Do you do any forms of gentle exercise like Yoga? Some of the postures are good for getting blood to the head but for me the effects do not last very long. Maybe worth a try with an experienced teacher who understands the condition and who will go very easy on you (my teacher, even though experienced, gave me an exercise that made me worse, so be cautious!)

Best wishes

Ben

Hi Belinda, just looked in the telephone book and no we dont have any here. This is a small town and I have to go out of town for most of my doctors, but none there either. I agree my Cardiologist is over his head, and I just hope he doesnt make things worse. Thanks Vanessa

MRS Glass- Do you know of any electrophysiologists in your area? I have found that they tend to know a little more about dysautonomias since their specialty is the electrical system of the heart.

I am just recently seeing one now and he was the most valuable to me.

I am starting the florinef at the right dosages-and now I understand why the dosaging seemed so whacky in the beginning.

It sounds to me like your cardiologist definitley should not be treating you for this..in the meantime try and keep your head up and look in the electrophysiologist deal.

Good Luck I hope oyu get into Vanderbilt soon.(((HUGS TO YOU)). Belinda

Hi I have checked on the Dinet home page and this is as close as it gets. I just hope that I can get in. I am so tired of messing with doctors who dont know what they are doing. But I am going to keep looking and begging Vanderbilt if I have to. My family will not let me give up. Thanks Vanessa

Dear Mrs.Glass,

Well, that was certainly an unsatisfactory visit with the cardiologist! I do hope you can get into Vanderbilt. Or somewhere else where they better understand how to help you.

Unfortunately, when you have something that is not well understood, you must become your own advocate and search and not give up until you find the help you need. You are on the right track.

There may be other places that might be able to help you closer to home and sooner. Did you check the doctor information page that can be accessed from the DINET home page?

I share your frustration and can only say, there are doctors available who can help and just hang on until you find the right one to help you.

[sally]

Mrs. Glass,

I don't know if you have seen any of these docs listed but they are supposed to be electrophysiologists. They are located in New Mexico. They also have a search where you can find a specialist elsewhere in other other states if you prefer. I don't know if they see patients who have POTS though you would have to ask further questions to them.

Maybe one of these specialist may work incase you are unable to get your appt at Vanderbilt right away.

http://www.hrsonline.org/find_heart_rhythm...searchbycountry

Good luck and hope you feel better.

[blackbirdsings]

Have you been tried on anything other than Florinef? There are LOTS of other meds out there, not tons, but certainly more options than just Florinef. I had a rough time with Florinef and I did much worse on it, and with lots of side effects. Works for some, others it doesn't. Are you continuing with extra fluids, salty foods, and all those little things? Any little thing you can do is better than nothing, until you can get to a better doctor.

[Mrs. Glass]

sorry to be so late on responding, between the holiday, and this stupid illness, I have not felt very well at all. No all he has tried me on is Florinef and Midodrine. He has put me back on the Florinef and the Midodrine as well because my b/p started dropping dangerously low. It is not any better though. Yes I do drink a lot of water and salt is my main food group these days. Nothing seems to help. Thanks for the suggestions though. Vanessa

Have you been tried on anything other than Florinef? There are LOTS of other meds out there, not tons, but certainly more options than just Florinef. I had a rough time with Florinef and I did much worse on it, and with lots of side effects. Works for some, others it doesn't. Are you continuing with extra fluids, salty foods, and all those little things? Any little thing you can do is better than nothing, until you can get to a better doctor.

Thanks for the link I will check into it to see where the nearest one is to me. Vanessa

Mrs. Glass,

I don't know if you have seen any of these docs listed but they are supposed to be electrophysiologists. They are located in New Mexico. They also have a search where you can find a specialist elsewhere in other other states if you prefer. I don't know if they see patients who have POTS though you would have to ask further questions to them.

Maybe one of these specialist may work incase you are unable to get your appt at Vanderbilt right away.

http://www.hrsonline.org/find_heart_rhythm...searchbycountry

Good luck and hope you feel better.