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cardiactec

Anyone's Doc Do This??????

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has anyone's cardio just "given up" on taking orthostatics when you have your follow up appt? i dont know whether or not my cardio has "given up" or if he just doesnt want to deal with the reality of the situation, but seriously, he has not done orthostatics on me for like a year! he only takes me pulse and BP while lying down! so anyway, i saw my PCP today and told him i havent been feeling right with my BP and that i almost guarrantee my pulse is completely out of wack when standing because of my cardio cutting back my beta (he had to cuz i told him my BP in the docs office last week sitting was 82/60)...........

so anyway, after the appt with my PCP was almost over, I HAD TO SUGGEST TO HIM to do orthostatics on me saying to him "so i guess everyone is fine without knowing what my heart or BP are doing when i'm standing because i have felt really cruddy and i assume something is up". so he said "oh well we'll do orthostatics on you at 30 secs, 3 minutes, and 5 minutes. heh oh yeah....

... so the med assistant comes in to do all this. after a minute of standing, like you all have explained, she cannot get a BP. the first BP she got at 30 secs, she got 90/60. she called the doc in to get the next reading and even SHE was like "i cant hear it that well, your pulse is thready"....anyway she seemed to come up with "88/50 something SHE THINKS".............meanwhile my heart rates are up to the 170's!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MIND YOU WHILE I'M STILL ON 160MG'S OF BETA BLOCKER AT THIS POINT!! before i left my PCP's, i happened to see my him and asked him if they had given him the readings and he said "yes i got them, i am going to call your cardio cuz obviously there needs to be more of a control factor happening with your HR". DUH!!! glad SOMEONE thinks so! i'm wondering why he wasnt too concerned with my pressure also, while only after 5 mins, being at 88 when TYPICALLY my pressure upright is more like 110. i wasnt even going to ask to stand longer than 5 mins to see where my BP would go, and actually i told them i had to lay down cuz i thought i was going to go down!

he's a great doc, but i'm wondering why no one has been running orthostatics on me unless I SUGGEST IT???!!! anyone have this problem???? i mean the only way to TRULY tell if any meds are helping is to stand you up, right?!?!?!?

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yea they really dont do othrostatics on me any more unless they feel they need too.. they allready know that i spike and drop.. and im normal very symptomatic.. so..we dont push it..

maybe they just dont want to put you thru the risk of fainting.. andtriggering you to feel yucky...

But i m gald that they are finally taking you more seriously and are going to try and regulate your meds more..

I wanted to also mention that i have very irratic Hr;s as well... my hr has been in the 240's.. and i ve had resting rates way to frequently .. of 190-200 and higher..

Have you thought of trying a different BB? Im on a decent combo of bb's right now..i ve maxed out on the one bb's but it works better then any bb i ve tried before... (right now my resting runs bettween 50-120 depending on the day..instead of 200...)but it has taken 5 years of trying meds.. and about 15(possibly more) different bb's and calcium channel blockers before we've found somehting that work ok..

so dont give up with your HR issues..it may be a matter of finding the right med for you..that is potent enough to really work well for you.. good luck

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My EP never does orthostatics. He just asks about my symptoms and has my sitting pressure and hr measured. But, I agree it seems like baseline data they should collect at each visit. I was denied short-term disability based on the fact that my SITTING hr and bp were "under control" 3 months after diagnosis. I could not go back to work for much longer than that. So, I think you are making a really good point, for a number of reasons. It is good for the doctor to have this baseline data in your records--for making appropriate care decisions and as evidence for disability.

So sorry you are still struggling with such high heart rates. I hope this can be resolved soon with appropriate treatment.

Katherine

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Guest tearose

In the case of our "favorite" doctors who usually are excellent...

Sometimes I think even good doctors get numb when dealing with us. Sometimes,I try to put myself in their shoes. Let's face it, we aren't the easiest bunch to treat! :P

They can't give us a magic pill and get us all better. We sometimes even seem to manage better without their intervention...

That being said, I would have done the exact thing you did. You took the matter into your own hands and were your own advocate. I hope this doctor will have learned from this experience and will be more in tune to your needs so you can get the help you need and then manage yourself well again.

best regards, tearose

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Guest Eliza

Cardiactec,

Yes, my EP used to do orthostatic bp's everytime I saw him and NOW he doesn't. I have even noticed that my visits with him are much shorter and he seems to be too busy (unlike when I first started seeing him... he was very attentive). I think after a while the docs DO get to a point where they don't think those things are important anymore, though they may be important to US.

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I have been to about 30 doctors and only two did orthostatics. One was a chiropractor who was interested and the other was a neurologist after we had a fight (she thought there was nothing wrong and I saw her for my orthostatic symptoms!) So, I think if you want it done, you have to ask for it, period.

OLL

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My docs did initially, but they haven't in years. In fact, some of my lab work is really wacky and they don't followup or do anything to correct it. Once I asked my IMD why and basically said that for me this is normal. They know of the problems, and medicate around them, but don't need to necessarily follow every step as they would with an undiagnosed or new patient. This made sense to me.

Also, he said that he doesn't explain everything anymore, because he feels that as expert on POTS as he is and he trusts that I will ask if there is anything confusing and said that we've been on the same page for a long time. This made me feel great. If I were feeling ill though, I would have been full of anxiety about it.

I think it would be a nice conversation to have with your doctor about expectations and his motivations behind what he is having you do or not do. Sometimes I get caught up in thinking that I'm being brushed off, but then when I say something about it- it always ends up that my doc is smarter than I'm giving him credit for. At least, this has been my experience. Maybe your doc is the same way...?

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My docs dont do those either much anymore. They know somedays I am okay and others not so okay...Have/Are you on an extended release BB such as Toprol XL, etc.?...

Jacquie

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they tried toprol xl with me a couple years ago, at 150 mg's, and still was tachy at 170's..... :P/ ....

i talked to the beth israel folks today (doc you know who) and he wants me to give florinef a go again. he actually wanted me to stop sotalol altogether to see if the BP was dropping from that or if it was from auto dys, but since i start teaching my class tuesday, i dont want to make any crazy changes to my meds right now......so yeah, starting back on .3mg's of florinef a day, should be interesting considering what florinef did to me years ago when i started taking that much. not fun. but who knows, my body has changed since then, so perhaps it'll help this time around....for both the HR and BP.

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Is doc you know who lol going to have to work your way up to .3mg. I was having the same probs before...the BB's were making my bp bottom out, therefore my heart pumped faster trying to make up for the low bp....I also had an arrhythmia as well that made my rates go up...Have you thought about a second opinion??

Did you get my message I pm/emailed you???

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i don't want to sound insensitive by any means, but all of you as well as my wife are caught in an economic tornado. i spoke w/a doc @ hopkins at length about the "local" yocals giving a rip about a rare disorder. his response was this, "unfortunately the time, money & resources are just not there anymore to delve into these types of cases. we can make more money seeing 5 patients w/ear infections than 1 pots/rare (fill in the blank). the days of wanting to find the root cause are gone." also, i have found for the last 4 years that you have to do your own legwork. the old addage "if you want something done right, you better do it yourself" definitely applies here. it seems like most, not all, doors get slammed because of the almighty dollar. so much for the hippocratic oath! where is HOUSE when you need him?!? my advice is to get at least one doc in your corner that is your go-to guy, point man, whatever you want to call him and just come out swinging. y'all won't get the answers you need unless you keep at these guys. end of soapbox...

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I hope your doc will EASE you into such a high dose of FLORINEF! I tried that stuff years ago and had to start with a quarter tablet and add another quarter about every 4 days to get up to .1 !! It can cause such fluctuations and headaches and for dose sensitive, needs to be almost pediatric dose and them upped SLOWLY.

And taken off slowly.

My doc takes orthostic tests stuff himself when I am symptomatic and even lying down when I am super tachy..and especially listens to my heart when I am super tachy and the tremors are bad (from adrenalin)

But I have been seeing him for years so no need to check that every three months.

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I think that if you want the orthostatic measurements, even though your doc might not need them to guage your progress/condition, you should go ahead and ask for it bc it's important to you, and you are the "customer"/client. But, when my doc's office conducts the orthostatics, they charge something specifically for that test (although it seems basic enough to me)...so, I guess sometimes it might just come under some kind of unjustifiable charge w/your insurance company? Maybe. Anywho... Another option, if it is important to you to monitor those numbers, I think you really should invest in a bp and hr machine you can use at home. My mom and I both have them (and I also have a heart rate watch, the sports kind, but it gives me the info I need). I also have my cuff and listening duhiky left over from my nursing days...and I trust them about the same for the number itself (although you get some extra info by actually listening).

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Corey,

Yes, you are correct that some medical illnesses are much easier to treat than others. I don't agree that some of the "local yokels" have little interest in treating or diagnosing POTS simply because of money issues. If you detect disinterest, I think it is because POTS is so poorly understood and in some cases difficult to treat. It is very frustrating and demoralizing when a physician who really cares can't help a patient.

I can tell you that I know a physician who allows significantly more time for patient visits because that physician wants to make sure that her patients get the time that is needed. This is not to her benefit. She could make more money seeing more patients in shorter amounts of time. She also spends a great deal of time and energy as a neurologist trying to find the cause for an atypical constellation of symptoms. I KNOW that I am NOT the only person who practices like this. Not everyone in this world is driven by money.

I don't bother to check my own orthostatics because I know by my symptoms when I am in trouble. I don't need to see the numbers to know. Perhaps some of your doctors rely on your symptoms in the same manner?

Karyn

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My BPs are checked standing and sitting---only by Dr. Grubb's office. And only once my BP fell to 80s over something. Most of the time it's in the normal range----and for sure I have OI and POTS. I have had BPs readings of 70s over something standing when I take it at home. Your doctor might be going by your symptoms---because our BPs can swing all over the place.

I do think if a patient has a history of OI---BPs need to be taken standing and sitting. But a lot of physician offices don't do this. My BP machine measures my BP and heart rate. It might be a good idea to buy a BP machine to keep track of yours troughout the day standing and sitting, and when you feel symptoms.

My symptoms tell me also---------if I feel like the floor is coming up at me, or I'm on a moving treadmill, it's time to sit. If my heart starts fluttering---then I had a rapid drop in BP. It is usually delayed, and I have enough time to sit. Sometimes when I'm at home and I take my BP, and it's really low----I may not feel the symptoms-----other then a little sluggish.

Once when I went to our family surgeon to schedule a colonoscopy my BP was really low 80/50----so she said she wouldn't do the colonoscopy unless I'm in a hospital---and one that handles trauma heart patients. This woman really has her head screwed on straight. That is the first time I saw with my own eyes actual concern for my well being. I mean you could see it on her face---the look of concern.

Maybe keep a log of your blood pressure readings for your doctor, and after they see how low it can get they may start doing it on their own without being asked. If not, maybe you'll still need to request it when you feel the need.

Maxine :0)

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