So basically, he said that I have dsyautonomia that my nervous system is F'ed up. No kidding I knew that. The he says that everything going on with my heart is because of this disorder and that physcially there is nothing wrong with the heart. Other than the Atrial flutter which they say is no big deal until it turns into a atrial fib. Said that I have tachycardia, and that there is nothing that can be done with it. Since the problem once again is my nervous system causing it. That I have hypertension now that I bascially have started this in my family now since there is no other history of it in my family. That I need to continue the medications I am on, and just live with it. GERRRRR!!!!!!!! So today was basically a waste of my time. He wants to see me back in 4 months, for what to say I still have to deal with it!!!!! My reg cardio does more for me then this idiot did. And I had two doctors in the room with me. They just dont know what to do with me basically. They said I need to see and endocrin doctor, well I have been trying but no return phones calls from the place I have been referred to. Says it takes 3-4 weeks for an appointment to be set after the doctor reviews my records. Its been over a month and still no contact with them. Another thing pissing me off. Excuse my language but I didnt have high blood pressure earlier but now I do. I am so annoyed right now.

Hi Misty,

I can appreciate your frustration. {{{sigh}}}
Another day, another appointment, and not a darn thing accomplished. I'm sory your appointment didn't produce any new information or suggestions for you - that is always disappointing...I've been there too. So, why see him again in four months??? There are always other opinions out there to be gotten.

Lynn

It is just so annoying when you have been told what you have and you expect doctors you know something more indetail about it. And be able to as doctors tell you what you can do. Not just be a guine(sp?) pig on medication to make it so your symptoms dont disable you. This is a joke, to have to go through life without any answers other than a diagnoses to why you have this issue but not sight of how to fix it or make it better.

I know how hard it can be to not want to jump up and down and scream! I think that maybe you need a new EP doctor, the one you have may be good, but his bedside manor doesn't seem so great. Why do they have you seeing an endo? Have you seen a good neurologist yet? That might be your better bet. I have seen them all, and honestly the only one that doesn't fustrate me is my psych! LOL...instead, she encourages me to keep fighting, to keep looking. It sounds like you may need one of those too. It does help to have someone to talk to...someone to listen to you vent. (and believe me I went through several of those too before finding a good one!!)

I was reading the other day about your heart problems, and have to say I was completly lost, lol....but, don't worry, I have no clue what the heart docs are saying to me either, and I've had 3 ablations......there is so much termonology, that I don't understand how anyone understands it....lol.....I guess that's why they're the doctors, and we're the patient. Don't give up hun, find an EP doc that will sit down with you and help you understand everything. I think they get so busy with making money, they tend to brush us off! My Ep doc told me the last time that I saw him, that I was all done, that I didn't need to see him anymore...LOL~ well that lasted 7 months and now I find myself needing another ablation....My heart is now going too fast?!?

My point here is not to give up, arm yourself with lots of questions....write them down if you have to, but try to understand that our ANS is messed up, and it causes all kinds of interesting symptoms. It affects everything from eating to breating to the bowels. And any number of triggers can throw it off balance.....The key to this is finding your balance.

Well....I think I've babbled on long enough....keep us posted!

I'm working on a book girls. Need to get the word out. And trust me. I don't hold back.
(imagine that!) lol

Misty,

Your EP is right. There is nothing wrong with your heart and you are wasting your time by seeing him. There is something wrong with your nervous system, and you need to see a neurologist who is an autonomic specialist. I found these two in Florida listed on this site. It is wroth a short trip to see someone who can help.

Dr. William Cheshire
Mayo Clinic Jacksonville
Department of Neurology
4500 San Pablo Road
Jacksonville, FL 32224
Phone: (904) 953-7228
Specialty: Shy-Dragger Syndrome, Orthostatic Intolerance
Web Site: http://www.mayo.edu/mcj/MCJhome.html


Dr. Charles Thompson
The Center for Patient Care
Autonomic Medicine
8550 University Parkway
Pensacola, FL 32514
Phone: (850) 969-7990
FAX: (850) 969-0611
Speciality: Orthostatic Intolerance / POTS, NCS, other Autonomic disorders

I was seeing a neurologist before I got diagnosed with dysautonomia. she was treating me for the migrains. But I cant see her anymore since she dont take medicaid. My cardiologist referred me to a neurologist but she dont take medicaid either. The same group she works for is at another location and they do but it is the same deal with my appointment to see a endocrinologist. The doctor needs to send over all my records, they will review them and set my appointment in 3-4 weeks. So I have to call the cardiologist back and let him know what he needs to do inorder for me to see the neurologist. I guess with the endo doc they want to make sure nothing else is going on. The orginally though I may have addisions diease. So that is the main reason they want me to see them. And also now that we know its dys they think the endo would be able to help me with that. I dont know who to go to anymore or what to do. I am lost at this point. When I got home I had a message from my pcp office that I needed to call them. I dont know what it is about but it was already after 5pm so I will have to call them tomorrow. I am just so frustrated. The doctors know what is wrong with me for the most part but none of them know what to do anymore. My system is always changing what its doing. Like having hypotension for 4 yrs and now developed hypertension. They just dont understand how this could be. Said yea with dsy it can change and be either or but to go so long with low pressure to now having high they are confussed. Its not like I went high and back down to low I am staying high. My cardiologist has been awsome I think he sent me to the ep cardiologist to see if they think I need an ablation done again. But he does not feel I do that it wont be of us, since the first one didnt hold up. That I dont need to put my body through that anymore. As if its really going to matter, my body is going through hell now, what would one test change? Well I think I have vented enough.
Thank you for your kindness and inspiration to not give up hope.

I just talked to my husband on the phone about all this and I told him about the two places in florida that specializes in it. And he said they are only about a two hour drive for us and that I should call them and see if I can get in there. My only issues is to find out if they take medicaid. I do not have the money to pay out of pocket the economy hasnt been on my side. And I cant work so my husband works 3 jobs to support us.

Also, check out the Cleveland Clinic in Weston, FL.

http://my.clevelandclinic.org/florida/default.aspx

Misty -

Hope you get the help you need and those places in Florida work out.
Just for the record, not all EP cardios are a waste of time. I was finally diagnosed by my EP cardio who is very informed about dysautonomia. In fact, the neurologist I saw was not. So, it just depends on who you are dealing with and what they know. Unfortunately, there's really no way to know until you see him/her and then you find out the hard way like you did.

You said that the ep doc said you have tachycardia and there's nothing to be done because it is the nervous system causing it. What I believe he is saying (but not clearly) is that he can't do anything structurally or surgically like ablation for it but there certainly are medication options you can try. As you may know, I have POTS, IST, afib and episodes of SVT. My EP Dr. has always said that it is possible to ablate and treat the IST, afib and SVT as they are being triggered from an electrical malfunction but not the POTS as it is triggered by wrong brain signals (technically it all originates in the brain but I don't understand all the nuances). However, he won't attempt this right now while everything is so active. The problem is in isolating which "bad circuits" are related to POTS and which circuits the other atrial arrythmias. I'm fortunate that he recognizes that ablation could actually make my POTS worse. Good luck....it's so frustrating to be bounced around like a ping pong ball....

I have been told by my regular cardio that I have IST. That was the reason why they sent me to the EP cardio, for that and SVT. But he said since I have had the ablation done once in 04 most likely I wouldnt help for me to do it again. The same problem would just come back again as it has. That is what he said to me that all we can do is try different medications. So... I am going to call those other places in florida and see if they take medicaid and if they do then get in to see them asap. So so far I have POTS, NCS,IST, and SVT. I go on next wed to find out if I have IBS I finally got an appointment with the gasterologist.

Misty -

You said the Dr. said that since you had an ablation for your IST in 04 that it wouldn't help to do it again. That's not necessarily true. For IST, if they are able to isolate the right circuits, it can be very successful. It was with my cousin. The first attempt was successful for about 6 months and it did come back. The next attempt has been successful so far for 5 years. Again, you have to find an ep who is well versed in POTS because if they aren't experienced enough with isolating the right circuits, your POTS may get worse. This is why my EP is holding off on another ablation attempt for my other atrial arrythmias. He won't attempt it until my other symptoms are calmer and if the circuits are too irritated during the procedure, he opts not to do any ablation at all. But, it depends on the Dr. I see mind next week - if he believes he could ablate the circuits causing the IST, etc. I would be willing to try. They are a big part of my daily symptoms that I would be thrilled to be rid of. I know there are no guarantees......
Hope your tummy is still feeling better....

quote:

You said the Dr. said that since you had an ablation for your IST in 04 that it wouldn't help to do it again. That's not necessarily true. For IST, if they are able to isolate the right circuits, it can be very successful. It was with my cousin. The first attempt was successful for about 6 months and it did come back. The next attempt has been successful so far for 5 years. Again, you have to find an ep who is well versed in POTS because if they aren't experienced enough with isolating the right circuits, your POTS may get worse. This is why my EP is holding off on another ablation attempt for my other atrial arrythmias. He won't attempt it until my other symptoms are calmer and if the circuits are too irritated during the procedure, he opts not to do any ablation at all. But, it depends on the Dr. I see mind next week - if he believes he could ablate the circuits causing the IST, etc. I would be willing to try. They are a big part of my daily symptoms that I would be thrilled to be rid of. I know there are no guarantees......
Hope your tummy is still feeling better....

I think they said this due to after my first ablation I had something happen that they dont want to repeat. When I left the hospital and got to my parents front yard to get my son I collapsed. Lost my heart rate, went completely pale and was not breathing. My mom had to call 911 and they had to shock my heart to get it pumping again. They never figured out the exact cause of what happend to make my heart stop but they said it had something to do with the ablation. My body did not handle it well. So in a way myself I am in no hurry to have it redone again either. That was very scary.

As far as my tummy it is feeling better. No more cramping and I finally had a bowel movement yesterday. I will find out what is going on with that on Wed when I see the gasterologist. I guess they want to do a bunch of things. So I will have some answers then.

Well, that certainly puts a different light on things. So, when he said it wouldn't work, he was talking about how you responded. That had to be a terrifying experience - I don't blame you - I wouldn't want to attempt that again either.

Glad your feeling better.....good luck with everything Misty.

Well my hunt continues on to find someone who specializes this disorder. All the places that was listed to me does not accept medicaid. The one in Pensacola told me that they made an exception for one person and took them from here with medicaid and I guess they are still fighting to get paid. So needless to say they wont take another person on medicaid. So I am right back to square one...