Stopping Anti-hypertensive Meds

[Braveheart]

Hi everyone,

Happy New Year to you all! I arrived back on British soil this morning from Houston, Tx. Thoroughly enjoyed the vacation and visiting my American friends again. Had a good time, even if the weather was cooler than expected. Ahh well.

Now, I have another question I'm afraid. As many of you will know I've been having these epsidodes over that past 16months or so, which have been thought to be TIA, then migraine, vasovagal and so on. I don't honestly think anyone knows, but no one will admit that. Anyway, about 5 weeks ago I had a 2nd neuro opinion in London. This neurologist says the brain scans look entirely normal to him and that the visual problem could be migrain and the fainting/dizzy epsiodes as a result of drop in blood pressure.

I have an appointment with my cardiologist on 26th January, in meantime I have recieved a letter from him saying that he has a report from the neurologist regarding my last appointment. My cardiologist said he would like me to come completely off my anti-hypertensive drugs and hopes I am comfortable with the decision!! Quite frankly I think he's crazy doing this. I have a history of aortic aneurysms and my last heart surgeon told me I should remain on the Atenolol as a protection and that if my blood pressure ever went above 140/90 i was to report it to him. I will of course discuss my concerns with my cardiologist in a couple of weeks, but in the meantime I'm confused and a bit upset. I feel like it's just one more thing they are trying to see what happens, I feel like a guinea pig in some kind of experiment.

Any input would be appreciated. How should I approach this and what should I say to the cardiologist??

Thanks,

Jonathan

p.s. when I was in Houston I was chatting with a friend of the family, who is a cardiologist and he said that Medtronics have a device that can be inserted under the skin. It's called 'REVEAL' and it can help determine the cause of a patient's epsiodes by monitoring heart tracing.
----------------------------------------------
Resection descending aortic aneurysm - Feb. 99
Aortic Valve & Root replacement (carbomedics mechanical valve & dacron conduit) Oct. 98
Dacron onlay patch graft for Coarctation of Aorta - Jan. 85

 

[hensylee]

Mornin Jonathan - on another site (about.com - heart disease/cardiology - Dr Rich) there was a lady who had REVEAL implanted. It is another type of monitor. My brother had sudden drops in bp and his was dxed as orthostatic hypotension (which should show up in the REVEAL). His bp would suddenly drop and he would pass out - syncope. His dr is electrophysiologist cardio - is yours? If this hasn't been explored, you might ask. Best to you.

Glad you had a good visit in Houston. God bless

 

[Jessica_B.]

Hi and welcome home !

I would not stop taking the blood pressure drugs until you have been able to discuss it at length with the doctor.
Just tell him that at the present time you do not feel comfortable with his request and will need more information and clarifications as to why you should before you proceed. Given your history it shouldn't be too hard for the doctor to accept that... After all, it is your body.

Good luck,

/jessica

 

[RobThatsMe]

Hi J,

I am with you on the thoughts of your cardio being crazy. I have been on Atenolol since my surgery. The two reasons are, my surgery was caused due to a dissection, and that I have several other areas that have aneurysm potential. Both my surgeon and cardiologist want me to stay on it. Their reasons are: 1). it lowers my BP, thus the impact on the weak walls of my aortic arterty are less, and 2). The slowing of my heart rate limits the number of times the walls take an impact.

Also, I think you may already know that you have to be weined off of a Beta Blocker. You just don't stop cold-turkey. Your doctor should know that, and gradually take you down in dose before you quit completely. If that is what you decide to do.

Keep us posted on how this all progresses,

Rob

 

[Braveheart]

Update

Update

Hey Jessica and Rob

Thanks for your replies. It REALLY helps to know people understand and care.

Well, today I called my cardiac surgeon's secretary and she had read my email to her and was concerned with it's content. She said that she remembers my heart surgeon explaining how important the Atenolol was in preventing more aneurysms, even a disection of the aorta. She said she will speak with the surgeon first thing tomorrow and arrange for him to call my cardiologist. I explained that if necessary I shall change cardiologist as I feel so strongly over this. We will just have to see what happens now. But, I need someone I can trust and all my life I've had doctors who have screwed up on me - my confidence is at an all time low right now. I do, however, totally trust my cardiac surgeon. He brought me through a surgery I was not expected to survive. I'm thankful for his help in saving me, but now I want to be looked after and not have someone screw up on me.

Thank you again.

Jonathan

 

[Mb]

My husband takes attenenol also. Four tabs daily, which I understand is kind of high......

His heart rate, resting, stays around 70. Slight exertion causes the HR to go between 140-190, which just exhausts him.

Any comment from you attenenol folks?

 

[Mara]

Jonathan-
You seem to have the worst luck going.
I am glad you are standing up to those twits at the NHS. Tell them what you want.
Maybe you should write a letter to ol' Tony Blair and let him in on all your NHS troubles and he'll decide to put more money into it.

When doctors don't get paid anything, they don't seem to care about patients. I think that dropping you off your BP meds could compromise your health, I mean, what if you had followed the guys advice, gone off the meds and had an aneurysm? You can't sue the NHS...and if you did, what would you get? Nothing.

The NHS is the major reason I don't think David and I will ever move back to Glasgow. It scares me and I am so worried for all you who are on it.

It might be time to think about going privately, just until you get the whole TIA/migraine thing resolved!

Good Luck!
-Mara

 

[RobThatsMe]

Hi again J,

Just wanted to add to Mara's comments regarding anuerysms. The stat's on aneurysm survival are not great. Mayo Clinic mentions that for aneurysm / dissection ruptures 80% never make it to the hospital, and of those that do, only 50% survive. (1 out of 10)

If you have the potential to develop an aneurysm, you really need to stay on top of your doctors and be monitored with a CAT scan at least once a year if the aneurysm area is stable, and every 6 months if it is in a growing stage.

How are AORTIC ANEURYSMS detected?
Patients sometimes detect an aneurysm by feeling a pulsating mass in the abdomen, or it may be found by their physician during a routine physical examination. The best way to detect unsuspected aortic aneurysms is by an ultrasound or CAT scan of the abdomen. Ultrasound is quick, inexpensive, non-invasive, and accurate; if the aorta can be seen, the presence of an aneurysm can be identified or excluded.

CAT scans of the abdomen remain the most accurate tests for aortic aneurysm, both for initial detection and for determining aneurysm size. They provide information equal to MRI scans.

My surgeon prefers using the CAT scan over the MRI.

Hope this helps you with your doctor.

Rob

 

[Braveheart]

Hi Rob and Mara

Thanks for your input, like I say I really appreciate everyone's help.

Mara, although I live in the UK and have NHS care like everyone else, I'm actually a private patient - all my heart surgery at treatments have been with the top docs in Harley Street London. Yet, despite all this I still keep getting messed about. So, I don't always think it's about money. I'm note sure if I'm just unlucky, but I just seem to always find myself in this situtaions. If I stand up for myself and say anything I'm branded an over anxious patient and that I show leave the medical matters to the doctors and trust their judgement. Unfortuantely, I have little faith in doctors, sad I know, but it's true. I'm always having to watch out for me. I'm about to post a letter to my cardiologist this morning highlight my concerns at his latest suggestion. I have this feeling that my appointment with him at Harley Street Clinic in a couple of Saturday's time is going to be a bit 'bumpy'. I'm resigning myself to the fact that I may have to find yet another cardiologist. I hate moving about, but I may have too. I'll keep you posted.

Rob, thank you too for your support. Your information on aneurysm survival rates is a real eye opener. I knew it was something like that. I can see why it's vital that we are cared for properly after surgery to prevent complications. Like you, I don't want to end up another statistic.

Thanks again friends.

Jonathan

 

[Jean]

Jonathan

Jonathan

Wow, Jonathon, I don't really have anything to help you. Just wanted to let you know that we are here commiserating with you. Hang in there and keep believing in yourself...don't let the doctors buffalo you.

 

[Zazzy]

Jonathan,
Ditto on what Jean said!!! I know that when a doc doesn't listen to you it is the pits!!! Keep at him kiddo... they can change!!!

Take care,
Zazz