Dr. Really Ticked Me Off...

[comfortzone]

I hate when this happens..... As a nurse I've heard doctors do this ever so rarely when a patient is driving them crazy about their blood pressure issues. I always cringed when they did it. It goes like this....The patient reports their worrisome blood pressure & the doc says in response, 'I order you to not take your blood pressure but twice a week'.

Yikes it happened to me LOL.... But I'm innocent. I was told to call if my new b/p med regimen was problematic. It was. I called. The doc made a med adjustment and ordered me to call and see how that change did with me after the Labor Day weekend. I make the change. I call to report that the change is not helping - in fact I am headachey almost daily and my b/p is still labile and I am still very symptomatic when it's high with headache - when it's low - feeling as if I must lie down.

I was curious if that was d/t the stopping of a med I'd been on a long time or just that the new meds aren't working as desired.

The nurse calls back and says the doctor says to stop taking your blood pressure except twice a week.

I was furious and called another of my physicians to report what I was told & that it was 100% not okay with me to have a patient with symptoms in the midst of tedious med adjustments not feeling well and be told to in essence ignore the way you feel and quit taking your blood pressure.

I would absolutely delight in tossing my b/p cuff in the trash if it weren't for feeling so crappy and it being all over the map to match how I feel --

I got so angry I almost did throw it in the trash....... Along with all the medications as well...... Would I be any worse off for doing that? Probably not - which is maybe why he said what he said to begin with.....

I'm getting more thin skinned these days it seems....

[Crow]

I'm sorry.

That sounds really crappy.

[Noreen]

That is rotten. Isn't it usually women the docs do this to?

After you have had a chance to step back from the overwhelming irritation and frustration, would it be possible to write up what the doc and when, what happened, etc. and FAX it in? We are always at the mercy of the nurse and her interpretation of the doctor's mood whether to minimize or not, the symptoms pts are reporting. The same words said in different tones can convey vastly different meanings.

I had similar thing happen with my cardiologist. I was going to schedule appt and then the Midodrine thing happened and realized I better get a 90 day supply to have in hand. Now with my blood pressure and heart rate issues I need to get in but am trying to get up the courage to call - not sure I can take any more dismissive answers myself.

((hugs))

noreen

[nmorgen]

Sorry to hear that. Maybe he is thinking it might take longer for your body to adjust to the new medication and that you need to give it time to work. Other than that I can't think of a good reason to not take your blood pressure. Ive never had any of my doctors tell me that. I also tended to get stroke level high blood pressure, so it was a necessity for me to take my blood pressure. I have to say that before I was diagnosed I went through 4 different blood pressure medications in a 4 month period. When I would have an POTs norepinephrine surge none of them worked and I would get crazy blood pressure like 175/159 and 160 pulses. I'm assuming you aren't having huge bp spikes and he still thinks it's in a relatively safe range. The real thing is do you trust his judgement? I know we all have to experiment with medication to find out what works for us, but if it isn't working and you aren't feeling better you need to pick your own timeline for when you decide that this regime isnt working and it's time to try something else. No sense in staying on medication that doesn't improve your life.

[momdi]

Agree with nmorgen. You might need 2 - 3 days on a med before things balance out.

OTOH, this can be infuriating. I remember when Michael was having problems with unusual fatigue (even for him) and a very slow pulse (30s, and even in the 20s), he brought a record to the doctor with his pulse and BP readings. The doc said "why are you being so obsessive?" Nice, huh? A friend, who's quite a bit older, brings the same doc detailed readings of her vital signs all the time and he praises her for her thoroughness. This was a young doc and I think he just couldn't relate to someone not too far from his age who was so sick. "Old" people - well, that's ok.

[issie]

You need to pay attention to "YOUR GUT FEELINGS". You know what is and isn't okay for your body. Just because a doctor tells us to do something, doesn't mean we have to. If it isn't working for you, you know it and there is no reason to continue something that is making you worse. Sometimes, we do know the answer - we just want someone else to say it out loud - it takes the responsibility off of us and puts it onto them. In the end, it is up to us what we do to our body and what we put into it. You being a nurse, know or will know as much as any doctor - because you will research your own individual issues. He won't! He will just treat you as the majority. When we have complex issues, we can't be treated like or as the majority. We are unique, and what works for one - may not work for us. HANG IN THERE!!!!!

[comfortzone]

Okay - you all do have some good points to consider. One I understand is to maybe understand that I interpreted the comment negatively and defensively when perhaps it was his odd-ish way to say give things more time. Thanks for the caring comments everyone!

I also see that momdi you endured much worse - gosh in regards to one of your own children -- good grief to read what you wrote was maddening..... Obsessive - wow... ridiculous For most of my career I worked in pediatrics -- if I heard a doc treat a mom/child duo in such a way that would have been written up so fast that doc's head would spin! If they would spend even ten minutes in that parents shoes with a sick child with a rare disease....well they would never fathom such an attitude.

Yes Issie I agree I am not a 'majority' person because just the hyperadrenergic part of this alone - means my blood pressure may not respond to meds in a way that's predictable -- for instance just getting out of bed in the a.m. when your meds have worn off - and the adrenalin surge just getting upright -- then having pain etc... well it's higher than the average Joe's normal hypertensive morning 'high' most likely. Blood pooling when standing - and heck I would have never taken a standing job except for the fact the only thing I know how to do is be a cook aside from nursing.....

Hi nmorgan -- I'd have to agree mine are not stroke high -- well at least I don't think so .... more like the 150's over the low 100's for my daily highs. But it's been like this for a long time ... well since January - that's when I went from fairly well controlled on 2 meds to crazy shifts and bounding fast heart rates, lots of palpitations etc... Heck I can't fathom what ever shifted to have things rather 'suddenly' get so much worse...with b/p control. Then when the beta blockers were added - it's been a never ending battle since. I do thank you for writing!

I probably over-reacted. I think beta-blockers make me feel like crap to begin with -- probably the abrupt stopping of another med didn't help things.

Now the fallout ... the doctor that I 'whined' too about being treated like some kind of Kook or nut case........I was told is going to call that very doctor who upset me and the two of them are going to put their heads together & let me know what's up. Great I thought - now what have I done.. Oh well! I suggested to his nurse that they just put me on Clonidine and my pain management doc does think it would be a good fit too...

I'm sorry for being so thin-skinned & irritable -- I feel foolish for letting that get the best of me - I need to think before I talk and rant...

I made an appt. with Dr. Francomano - the EDS expert in Baltimore..... to have her perhaps shed some light as to the Hypermobility Syndrome diagnosis and how it may be related to my weird experience s/p knee replacements when all of this stuff started happening. She would be the last rock I have to turn over to get more information -- if I can see Dr. Brad Tinkle in Cincinnati earlier than she in December than it will be him. After that puzzle piece is explained and snapped in - I will be out of respectable insurance and quite through with this seeking, seeking, seeking.... I've read up to 80% of EDS Hypermobility Syndrome patients have issues with blood pressure and tachycardia ... though thus far neuro thinks mine isn't related to this......we'll see I guess.

[issie]

Please do fill us in on what you learn about the EDS and the hyper adrenal thing. Since some of us are dealing with those issues. Maybe you can help us put the puzzle pieces together with your searching. It would be wonderful to find answers. Was your noriepi. high? If so, most people don't do well with beta blockers if that's the case. There are exceptions, but I haven't read of too many doing well if that's an issue.

[comfortzone]

From memory I believe my lying down numbers for all the catecholamines were normal. The standing one's were in actuality normal as well. The thing that stood out to the physician was that the difference from lying to standing was that the norepi tripled....or put in his words "showed a robust increase with standing"... So while I didn't have it get knocked out of the ballpark - it was a notable sharp rise...to the very top of the normal range.

Yes I hope to get one last appt. in about EDS things by years end...& I absolutely will share any gems I learn. I just got the paperwork from Dr. Francomano's for the pre-visit stuff ....... almost 40 pages to fill out! Genetics at UCSF had some paperwork - but nothing like this. It will be a true privelege to get to see her if it ends up working out... I hope it does. I should probably take careful note of the questions I need to have answered or clarified.....& start jotting them down right now.

[momdi]

40 pages! Yikes! Seriously, good luck with that.

Agree with Issie... please keep us posted on this.

I know you potsies are all so different, but if it's helpful, Michael is hyperadrenergic with high norepi levels lying and standing. He's doing better than ever on Toprol XL and Clonidine. The clonidine has transformed his sleep to a semi normal pattern. And just a couple of hours to wake up instead of half the day. He was on Inderal before, but the toprol xl is just smoother for him.

Dianne

[comfortzone]

40 pages! Yikes! Seriously, good luck with that.

Agree with Issie... please keep us posted on this.

I know you potsies are all so different, but if it's helpful, Michael is hyperadrenergic with high norepi levels lying and standing. He's doing better than ever on Toprol XL and Clonidine. The clonidine has transformed his sleep to a semi normal pattern. And just a couple of hours to wake up instead of half the day. He was on Inderal before, but the toprol xl is just smoother for him.

Dianne

Hi Dianne :-)

I got a call from Dr. Goodman's nurse and she said he'll speak with the b/p doc I found disagreeable and that they will call with recommendations. I really want to try clonidine. It's been mentioned by my pain mgmt. specialist - I just sense it may be the best for my b/p -- a low dose at night perhaps. And of course my b/p has 'suddenly' become a bit more normalized......I still need better control for the high's -- but the very low's haven't come up in the last couple of days :-) Toprol wasn't enough control for me - but Bystolic seemed to target the highs quite well... The thing I noticed though was with standing it worked a bit too well. I'm sure it will all work out fine in the end

I'll do whatever he suggests... even if it is to not take my bp -- I trust Dr. Goodman. I'm glad Michael has a med profile that's working better - that was fantastic to read!

It took me all day to do the paperwork today for Dr. Francomano....Her part was 32 pages and then I copied my genetics report from UCSF - for an even 40 pages... Truly I didn't even do that great a job on the family history part about aunts and uncles and cousins and their similar maladies if they had any -- because I needed to get it mailed today to get a December appt. Then once it's in - I'll work on getting any details I can find....I have 7 sets of aunts and uncles and a near 30 cousins!

[Noreen]

Okay - you all do have some good points to consider. One I understand is to maybe understand that I interpreted the comment negatively and defensively when perhaps it was his odd-ish way to say give things more time. Thanks for the caring comments everyone!

...

I'm sorry for being so thin-skinned & irritable -- I feel foolish for letting that get the best of me - I need to think before I talk and rant...

You have nothing to be sorry about and you most definitely should not feel foolish.

Maybe you should think of it this way - By posting, you were able to release the stress the doctor and nurse caused. Since you weren't feeling as stressed you could constructively address other issues such as completing the report for Dr. F. I think everything you did was appropriate.

We're here for support. sweetie, and you can't be the superwoman you'd like to be and do everything yourself.

((hugs))

noreen

[comfortzone]

Thanks so much for the encouragement Reen.......

That was so kind and thoughtful and so appreciated!

:-)