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I saw the autonomic specialist today


Traci
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He did the tilt table test.

My heart rate increased about 50 beats but my bp stayed the same.

So he ruled out an autonomic problem.

I don't know how I feel about this for my hr and bp have been all over the map lately.

I didn't know that the bp was the big factor and it had to be low.

I still feel so many different symptoms like difficulty standing and sitting up, excessive thirst, nausea, blood pooling, loss of circulation, hr and bp changes etc.

I'm kinda discouraged for I don't know what to make of this Dr's opinion.

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Traci,

I hate to disagree with your doc, but your bp does not have to be low to have an autonomic problem. I for one have increased bp upon standing with increased heartrate. My bp does not fall until much later in the game. Look at the pages on DINET and you will see this info and many symptoms. Maybe you could print them out and take the pages to your doc next visit. This type of thing happens a lot with uninformed docs. My cardio used to think the same thing. I am not saying you have dysautonomia. I am saying that you do not have to have a drop in bp to have POTS or dysautonomia. Did he do any other autonomic testing? How long was the tilt and how many degrees? Did they do the medication part?

Ann

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The test took probably about 5-10 minutes at a 70 degree angle.

That is the only testing he did and no he didn't do any medication testing.

What is the medication testing?

I don't know, I mentioned to him that I thought the bp didn't have to go low, but he was positive it did.

Unfortunately he said he didn't need to see me again.

I think he is the only autonomic Dr in my city.

I sure hope he is right.

Traci

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I agree with Ann..your BP does not have to fluctuate on the tilt to have a problem.

My personal opinion is that we wax and wane so much in our severity of symptoms that the the tests can not always confirm our problems....

I also feel that the tilt test is in a much more controlled environment than we are in daily living and activities.

Oo the tilt you go from laying flat on a bed to being slowly tilted up with a bed supporting your body...

In my opinion that does not mimic the day to day activities of standing to sitting to laying to bending etc..... And all the pressure we put on out tendons and body in different ways all day,

The tilt just cannot mimic that.

I dont know where you live but hoprfuly you can do some research and fins a new Dr....

Good Luck and I hope you feel better quickly :rolleyes:

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Traci, I suggest you do some research and reading on this. On Pots place it clearly discusses the difference between low BP and HR increases. POTS is not a drop in blood pressure. It is an increase in HR more than 25 bpm. I have seen many doctors who are more familiar with Neurally Mediated Hypotenstion (dropping BP) and though they think they understnd, are really unfamliar with POTS. It's taken me a while to be able to explain the diffence to them, but I hope you'll do some reading so you can understand the difference too. Begin at Potsplace and I think it'll help.

PS: where is the doctor that you saw?

~Roselover

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The Doctor that I saw today is in Vancouver, Canada.

I really do not know what to do now, for I'm living a dysfuntional life with bp and hr problems along with other symptoms and nothing is being treated. I've been positionally trying to manage my symptoms on my own, but the symptoms have increased and are just too hard to manage on my own presently, especially the weight loss and lack of sleep due to odd feelings in my arms and head.

Traci

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Traci,

I am sorry for what you're going thru and can totally relate. I have seen a few of the docs who are listed on potsplace.com and ndrf. Some of them were OK, but I can tell you that some of them did not know much about it even though they are listed as autonomic specialists! I followed some very bad advice from one of the drs who told me I was fine and to stop my meds. And I wound up in the hospital because of it.

I agree with the others that it might make sense to get a second opinion. A doctor should confirm your diagnosis, but an increase of HR of 30 points or more would seem to mean POTS. Your BP does not have to drop. Did your specialist give you any ideas on what to do about the increase in HR? Even if he's saying it's not autonomic problem, a 50 point increase should mean something...

-Rita

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The specialist said he'd give me a beta blocker, but I am an asthmatic so he couldn't do that. Other then that he offered no other meds to lower the hr.

He mentioned that he thought it was due to deconditioning. How can I become conditioned when I can barely stand up for more then a couple of minutes.

I told him that right before the increased HR and the standing problems started I wasn't this deconditioned, I was able to jog a little and still do yoga. Then I became imobile due to all the problems.

Traci

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I am sorry you have had such problems. I have had two tilt tables, both in one week, both at the Mayo in AZ. My blood pressure only dropped slightly on one of them. They told me that did not matter. What mattered was that my heart rate went from 100 to 180 in less than a minute. The diagnosed me with POTS. I have since been to another cardiologist in Seattle who has admitted he does not know a lot about POTS but he is friends with Dr. Grubb and consults with him. NO one has ever questioned my diagnosis. That is just my personal experience. You may not have any autonomic problems but the increase in heart rate may make you want to get a second opinion. Unfortuately most people have to travel to get a correct diagnosis. Good luck with all this!

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Hi,

You have my dearest sympathy for having to find a good doctor in Canada. I have gone to the "best" Canadian specialists and none are able to help me.

In my opinion, your TTT is positive for POTS. As the others have said you don't need a drop in BP for POTS. It's the HR increase that matters.

I have travelled to the States and paid out of pocket money to have good treatment there. You might have to eventually consider that.

In the meantime you can still try to find one in your area that will at least give you the proper diagnosis.

Ernie

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Hi Traci,

To give you an idea, I was tilted at 75 and immediately went to 167 heart rate with an increase in bp. My bp did not drop till 25 minutes into the test. Again-you do not need a drop in bp for POTS, but even if he was looking for one, he did not wait long enough. Most tests are a minimum of 30 minutes. After 30 minutes, if there is no reaction, many times they infuse a medication isopropenol (spelling?) I think to try to induce a reaction in case you are having a good day. It sounds like you not only had a bogus doc, but possibly a bogus test. I think you should do some research and get some recommendations from board members and get a second opinion if you can. Sorry this happened.

So many docs are misinformed about this illness. Till this day, my cardio believes that "true" dysautonomia means that bp goes down. I am so thankful that I got a diagnosis from somewhere else and he accepts it (begrudgingly) because it is from a well known medical facility.

Ann

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ggggggggggggrrrrrrrrrrrrrrrrrrrr.

traci-

for the most part others have already said what i would say. i'm sorry you didn't get more help from the testing & doc today but don't give up....

a BP drop is not necessary for POTS nor for some other autonomic issues. especially with such a short tilt table test.

re: the doc's comment about deconditioning, it's something that a lot have heard and does have a grain of truth in it. chances are you are deconditioned NOW and that never helps, but like you said that doesn't mean that's the cause of things. and you're right that it's really hard to stop the downward spiral (of deconditioning) when you're not able to be upright without misery. for a lot of us one goal can be to find some type of treatment that helps enough to be able to be up enough to be able to work on the conditioning thing. not as a total fix, but as an added help.

hang in there,

:-)melissa

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Hi,

I understand what it's like to be frustrated regarding your diagnosis! I still don't have one...except for inappropriate sinus tachycardia. I still have lots of other problems that the docs have no clue about! The only reason I have that diagnosis was because I landed myself in the hospital for a few days and they watched my heartrate 24/7 on the monitor. So the doctors themselves saw that my heartrate shot up just walking to the bathroom!

If I hadn't been in the hospital, I would still have heart rate issues... I had passed the tilt table test. Nothing went wrong during it. Very frustrating, especially since I started to pass out during the test and they still told me I was fine!

As for taking a beta-blocker. My neurologist was going to give me one, but didn't because I have asthma. When I was in the hospital, the cardiologist decided to give me a small dose anyway and see. So I'm on atenolol, which hasn't made me wheeze at all!! It's a lifesaver. My pulse has slowed down considerably and I can't feel my heart beating out of my chest anymore!

Just thought I'd put my two cents in...

Good Luck!

Deb

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Doctor's tend to make this mistake but you don't have to have any change in blood pressure at all. That's the way I was when I was first diagnosed with POTS. I just had an increase in heartrate. 3 1/2 years later I do have a drop in my pressure.

I would suggest that you do some research, print some of the material that you find supporting your case and take them back to this autonomic specialist. You can help educate this doctor in what he's really seeing and maybe prevent his misdiagnosis for you & others. If you need weblinks let me know and I can give you very credible ones from research studies and doctor's!

Steph

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As a fellow POTS sufferer and from BC may I ask who you saw in Vancouver?I have recently seen Dr John Stewart who moved to the North Shore from Montreal .... I tried in vain to find an autonomic Doc in Vancouver ....looks like you need to extend your search ! Where do you live ? Maybe I can help you find a decent doc .....got lots of experience!!!

Margaret

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The most recent article on POTS, which poohbear posted the other day, from Clinical Cardiology, by John Camm in London, says that POTS can happen withou accompanying hypotension.

I had the same problem as you- my pulse and bp are all over the place, but in the tilt, my bp didn't drop, so I've been told I don't have autonomic dysfunction.

However, every other Doctor I have knows that this is RUBBISH. My blood pressure can be anything from 203/152 and 51/30

My pulse can go anywhere from 29 to 186

So take heart, your doctor isn't saying you don't have pots- or at least he shouldn't be.

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Traci...I agree with the others. With regard to the tilt table, I have been told by a doc on the Dinet list of docs that he thought a better judge was to hook you up to a dinamapp blood pressure and heart rate machine and take your vitals laying down, sitting up and then standing. The standing part should be done in intervals of a couple minutes and the standing time should be guided by your symptoms. He moreover indicated that many docs simply did not have the time to stay with you throughout the standing time etc. Standing on your own, he felt, was a better mimic of daily life than using the tilt table. Lots of time bp first rises to compensate for the heart rate changes -- eventually for some of us, the bp then begins to drop. Finally, you can have high blood pressure and still have POTS. That is, according to a 1995 article by Philip Low is a subset of POTS that is difficult to diagnose. Good luck

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  • 4 weeks later...

Thanks for all the replys.

I would have responded sooner, but I just recently got out of the hospital.

They holtered me and saw that my HR was all over the place, so they started me on a beta blocker.

I seem to keep getting more symptoms.

I've most recently have been experiencing weak eye muscles, funny face and head feelings.

Also before I would only dilate too much, now I seem to be going back and forth to dilating and constricting. I don't know if this is normal for people with pots. Does anybody else have this type of problem?

Margaret, was Dr. John Stewart helpful, and yes I do live in the lower mainland and would very much appreciate it if you could recommend me to some docs.

Traci

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Atleast they saw that your hr was all over the place. Hopefully with the beta blockers you will see an improvement.

At times, I can't think, just in a fog, but most of the times it will last a few minutes. I am going to be calling my dr. back, I think I need something else or more of what I am on.

Good luck

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Tracy ~

I've had 2 tilt table tests done.

The first one was for 20 minutes and I did fine.

The second one that I had done was for 45 minutes. My heart rate increased pretty quickly after the test started, but it was after the 30 minute mark that my blood pressure started dropping.

I bet your tilt table test wasn't long enough to get the correct results!

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