I'm Getting Fed Alot About What Normal Is

[pulp]

So guys, I'm new around here - gonna start off by saying I don't have a diagnosis but I just started the fight to get one. Slightly frustrating. But yeah, I got my bp measured in-office by a nurse and it showed resting 90/65, sitting up 75/65, standing 72/? after standing 3-5 mins 70/?. She didn't find the diastolic pressure. I got it measured later at uni and it was about 70/30. They keep insisting that it's all normal (oh hey you're a young woman), nevermind that I have alot of symtoms of hypotension and the anxiety I feel after my heart has raced all day with me at work is according to them causing the tachy and not other way around. Hen or the egg kind of stuff right now. I really want them to take me seriously, I do not have an anxiety disorder. Any tips from you with experience?

I sort of broke down after the dr last week said I have panic attacks, I'm a 100% sure it's not that. He agreed to do a 24h BP/pulse measurement, I think I will have it tomorrow. Did any of you get any diagnosis from this? Or did it help you in your struggle at all? ECG has been normal.

pulp

[corina]

hi pulp,

welcome at the forum! i'm sorry you're having trouble getting diagnosed as many around here have. hope the 24h bp/pulse measurement will give you (and your docs) some answers. when you check out the website you'll find lots of info on dysautonomia and for all your questions we are here to help you out!

corina

[mwise]

Hi Pulp,

Welcome to the best forum for support, love and lots of knowledge to help you find a diagnosis. I do hope you get the answer you are looking for from the BP/pulse measurement. If you don't, I would press for more tests like a tilt table test, QSART, etc...What state are you in? There are alot of good references of doctors on this forum. Good luck and keep us posted. Hugs to you

[Katybug]

Hi Pulp.

First, don't stop advocating for yourself. Trust that you know your body best and if you feel something is wrong, find a doctor that will commit to helping you figure out what it is. I actually asked my current cardiologist up front if she was willing to help me figure out what is wrong and not shrug me off. She has been a angel. You jut have to find the doctor that is going to work with you but any doctor dimishing you symptoms or brushing you off is not helping you.

My 24 hr/holter monitor did not give us the information we needed but I was so sick that I was laying down most of the time I had it on, so that could have been the problem. From everything I have read, the official diagnosis of POTS, Orthostatic Intolerence, and/or Neurocardiac Syncope, comes from a Tilt Table Test. Then, there are other tests that can be done after receiving a diagnosis that help to develop treatment plans and/or determine the origin of autonmic dysfunction (i.e. breathing tests, blood tests for catecholamines, sweat tests.)

Hope you find a diagnosis soon. Feel better.

[pulp]

Thanks for the warm welcome guys. Unfortunately I'm in Sweden so there's not very much around, I found some articles written about orthostatic hypotension written here but that was about it. I will try to press for a tilt table no matter what the 24h check says, just not sure which hospitals carry it. I've been told so much that it's just anxiety that I until lately was shrugging it off with the same thing but I've turned much worse so I can't really ignore it anymore - working is exhausting and at home even making food is postponed as long as I can cause it's so uncomfortable.

I did call psych last week after being so frustrated and got an appointment today, the doctor was an absolute angel. She listened to me and took 1,5h of time to do that + examine me more properly than any of the GPs have. She sent me for an ecg and orthostatic test at once and had me come back. The ecg had elevated pulse as it has been before but normal. The orthostatic test was an experience to say the least, they couldn't get a manual reading (don't think I've met anyone who can get one on me, bah!) so they took out the automatic cuff. 5-10 mins of rest had me 99 pulse 100/75 bp, upon standing 123 pulse 102/75 bp, 2 mins 142 pulse 93/72 bp, 4 min 163 pulse 101/77 bp. It was supposed to go on but I was about to faint so I sat down. I don't really trust that automatic cuff but no one seems to be able to do it manually. I've never been this close to fainting, uncomfortable. Was surprised that my BP didn't drop. Don't know what this exam says, the doctor said that it's difficult because anxiety could show itself like this too (though wouldn't my bp go up too?) and was a bit at a loss cause she's at the psych and can't really do very much but treat that. She did send the test results back to the GP though + a suggestion to start betablockers and also try some other heart monitor.

It felt really good to have someone actually making an effort for you. This site is amazing, I think I read just about all I could find here and alot of topics

Hugs to you!!

[wyominglacey]

Hi there, I went through a lot of the same process. I went to a bunch of doctors and 3 trips to the ER. EVery single one of them told me I had anxiety disorder and panic attacks. I did not agree with this. I kept telling them yes I probably do after having to go through this, but that is NOT the problem!!! I just felt from every doc that they didn't care to find out anything else and just wanted to get me out of their office because they didn't think it was important. I finally went to Mayo and they told me I have POTS. After being on here though I see that there are different kinds of POTS, which no one has even told me that. Now I am curious to know more about that.

[pulp]

I'm sorry you've had to go through it too Wyoming. I'm rather frustrated cause the psych doc said today that she tends to agree that it is anxiety. Don't really know what to say or do at this point. I'm a calm person who's never had problems with panic anxiety, not even at the worst times (If this is anxiety I guess I didn't know what it was until now, that it could make me so horribly exhausted and affected. I'm just so sad.

[Libby]

Oh, pulp. I wish I could give you a hug right now.

Was the other heart monitor the psych recommended a holter monitor? At my first appointment for tachycardia, the nurse practitioner who saw me made it very clear she thought it was anxiety, but she ordered a 24hr holter. After it came back, she had no problem believing that it wasn't anxiety. I don't know what aspect of the holter made her change her mind (I guess I didn't fit the pattern for anxiety), but maybe having one could help you, too?

It makes me sick that they're not listening to you, but I'm glad they're at least prescribing something that can treat your symptoms and make you feel better. Beta blockers were a godsend for me. There are a lot of them, so if the first one you try doesn't help, don't lose hope.

Keep us updated.

[pulp]

I am on my phone so a bit awkward to write. Thr psych suggested 24 holter yeah. I think if they put it on they would be quiet. I wont see the doc until next week I feel so bad and as if all is unreal. I am a nurse student and at the hospital training right now and today I just got some kind if attack again, just overwhelming fatigue and palpitations. My cognitive mind feels so far away and it just echoes in my head. I barely comprehend what anyone says. Do any of you experience this? It is like my whole body thrums, very surreal feeling. I want the blockers but it seems so far away. I have to make 175 hours in 5 weeks else I fail, have no idea how I will make it. I hope the doctor will help me. I tried lyrica which I have vs anxiety but it did not help. It used to when I had normal anxiety or how to put it. Hugs, pulp.

[Chaos]

Pulp- it sure looks like your numbers from the test the psych doc did with you would likely indicate POTS. Your HR definitely exceeded the 30 beat per minute increase within the first 10 minutes of standing. That's the definition of POTS. And, it is usually stated that there should NOT be much of a change in BP with the increase in HR. ( It is a NORMAL reaction to have your HR increase if your BP drops. It's abnormal (ie POTS) that you have that kind of an increase without the BP changing much.

Some people have POTS and then also have NMS or NCS in association with it. That would be where your BP drops later in the test if you were to continue past the first 10 minutes of the standing poorman's tilt table test the psych doc seems to have done.

Have you had a chance to check out the DINET website? It is a fountain of information about this condition. You might want to print out some of the info and take it with you when you see the doctor next week.

It's pretty common that we get mis-diagnosed with anxiety. In fact when I went to the autonomic center at Cleveland Clinic for testing for POTS, the cardiologist I saw there said she had NEVER seen a patient in her clinic that didn't come in with a diagnosis of depression and anxiety attached to them already.

[Katybug]

Hi Pulp. I went through being misdiagnosed with anxiety too. And at first I believed that's what it was (I had never even heard of POTS). But when the other symptoms (migraines, vomiting, diarrhea, severe abdominal cramping, visible shaking) continued to get worse, I knew it was something other than anxiety. Your autonomic test sounds like the typical POTS results. Please keep on the doctors until they help you, even if that means finding new doctors. I don't know what healthcare is like in your country but I have found even here in the US that it is more about the doctor's attitude than their knowledge. My cardiologist didn't know much about POTS, but she has made a point to learn since she diagnosed me. I think she's an angel but it wasn't her knowledge that helped me, it was her willing attitude that made the difference. I have my fingers crossed for you and send a hug your way.

[pulp]

I thought the test did too! At least after I looked at the criteria again. If it was anxiety my BP imo should've moved quite alot cause a panic attack with 163 in HR should in my opinion be a quite good one. But I guess I have selective panic attacks cause my hr dropped 40 points just by lying down. (bit ironic). I tried to find another doctor, just ANY doctor to be honest who might know something about pots here but I don't find anything at all in Swedish. I read just about all here in DINET, I'll see if I can print some out. The GP just seems quite non open-minded and is rather dismissive. If he starts up next week with talking about anxiety I think I might actually go crazy for real. So horrible thinking about how many people are in the psychiatric care who actually have an dysautonomia. If I manage to get a diagnosis (I'm sure I will eventually - the when is taking a toll though) I'm gonna start translating all I can about this into Swedish and try to inform people. I know that my issues are NOT mentally induced, it's just a feeling inside my body that I will try my best to trust.

It seems quite many people here see cardiologists, I thought neurologists would be the speciality for ANS issues - but maybe it's not?

[corina]

pulp,

a lot of us see a cardiologist because they start off having high heartrates which often makes a gp send you to the cardio. i was lucky to have a cardio who (after several tests) told me that he knew of some rare illness (didn't name it) that would need a neuro involved. that turned out to be pots. even luckier i was that that particular neuro was just 10km's from where i live! i have been on bb's (as well as other meds prescribed by my neuro) for years to control the high heartrates as my cardio told me that in the end that could cause damage to my heart.

here in europe we have the EFAS (european federation of autonomic societies) but unfortunately sweden is not a member (yet), but if you're interested, their website is www.efasweb.com . maybe your doctor can start learning from there (or from the amercian sites of course!).

corina

[pulp]

Okay, thats understandable Corina. That's great that your cardio knew all that and that your neuro was so close! I tried to tell my GP about POTS/dysautonomia over the phone but he wouldn't talk unless face to face - both good and bad I guess but I wanted him to read up before we met.

pulp

[pulp]

the GP's office today and he said he had looked through it and said nothing was important. I wrote down what I was doing during most of the readings. He said went along well yeah it's normal. Highest pulse it recorded 139, I was at home then - maybe making coffee. And he said it's normal? Really? Sleeping I had a pulse of 80-90 if I read it right (have requested copies to be sent home) . Asked if he had read the orhostatic test I did last week and he replied with "We'll we're out in the reality now". Told him I want the TTT and he said "basically you'e just done it". - meaning the 24h bp measuremt. Also asked if he had read about postural orthostatic tachycardia syndrome like I suggested he could do before we met and his reply was "orthostatism or what postural whatever - you don't have it". I just looooooove Drs. There's nothing wrong with me he says.

Wish I had some kind of that'd handle me all the pressure of trying to get ahold of doctors, again explaning my symtomsl Would be awesome having a #Next and the doctor ported into my livingroom instead.

[IceSkate]

Hi pulp,

I seem to be in a similar place with getting a diagnosis even though my numbers indiciate I have it. How is it going?

[pulp]

Hi IceSkate! I'm sorry you're going through the same thing. I did manage to meet a GP who believed me and that's good - he's a resource from whom I can get referrals to specialists. Right now I'm waiting for an appointment at the local hospitals medicine section. I'm also on propranolol from the GP and it has helped with most of the tachy though it seems hard to find the right dosage, he started with 40 mg x3, one pill had me 40-50ish bradycardia so now I'm taking 20 x 2 and it seems to work somewhat most days. Forgot my pills at home yesterday morning so yesterday evening and today didn't have any and sure noticed a difference, really high pulse all day. I so hope the specialists at medicine will believe me, hopefully will since I've worked with most of them the last 5 weeks while I've been at the cardiology ward as a student and know them by name and face.