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So frustrated!!


halmad85
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Hi everyone! I'm so frustrated with doctors and trying to get myself a dx that I could just scream. I'm starting to consider just accepting it...yes, I have tachycardia and it can cause alot of symptoms, plain and simple. :huh:

I saw the doctor today who actually does the tilt table test, and guess what..he's never heard of POTS!! He said he's heard of sinus tachy causing symptoms, but never heard of it being reffered to as POTS. So, basically he's just going to do the test now to get me to be quite. I told him today that sometimes I can have a symptoms without my pulse being sky high. For example, I had some nausea and just the cloudiness and shakiness today. But my pulse was about 90. Usually it will be higher during my symptoms, but sometimes I even feel one or two symptoms when it's not so high. So, he immediately was saying that my pulse isn't the only thing causing these symptoms. I did explain that if my symptoms are severe, my pulse is always about 120-160. Maybe he's right. Maybe it's not only the cause of my symptoms. I don't know what to think anymore.

He checked my pulse while sitting/standing. Said it was 70, then went to 100 after standing. He said that is normal adjustment for the body and gravity, and there was nothing abnormal going on with that. He was also quick to say because there was no change in blood pressure that I shouldn't even be taking the Florinef because it's more for orthostatic hypotension. He didn't seem at all interested in the pain I've been having since all this started. He didn't seem to find my fatigue, cloudiness, and loss of appetite related. He also told me I'm complusive because I wrote him a list of my symptoms and described them for him. I thought it might be more helpful if I had time to think about it so I don't forget something or get mixed up in my words. He mentioned maybe I have an anxiety disorder. Expecially since I've already talked to 4 other doctors about the problems I'm having. Well, I just think it would be nice if I could find one that knew how to diagnose POTS, or at least have heard of it!

I feel ready to give up on trying to find out why. Maybe it's not POTS. I mean, I do get symptoms while standing for long periods of time, just about always. My pulse will be pretty high at that time. But, I also feel bad sometimes if I just sitting down, but it's not severe. I do know that when I lay down, my symptoms will usually subside, except for maybe the cloudiness and just kinda feeling out of it (fatigue). I don't really know what it is, all I know is that I'm not right these days, and no doctor seems to know why. Any encouragement you can offer would be great and thanks so much for listening.

Thanks, Jen

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Hi,

I'm sorry you are having a hard time getting a diagnosis. :huh: Where do you live?? On the POTSPLACE page it has a list of docs in differ. states who are familiar with POTS...

Jacquie

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Jen,

I'm so sorry you are having problems getting this doc to hear you or help you.

FYI I am diagnosed with POTS (via a tilt table test). I did not faint during the test. I feel bad sitting as well as standing. I can be very out-of-it and fatigued when lying down as well. I have chronic GI symptoms which wax and wain along with a host of other symptoms listed on this website.

You're best bet is to locate a physician who is familiar with autonomic nervous system dysfunction. Others on this forum have asked where you live to try and help you.

If and when you do locate a physician, you should ask the receptionist ahead of the visit if the doctor has heard of neurally mediated hypotension or postural orthostatic tachycardia? That way, you won't waste your time at the wrong doctor's office.

I forgot if you said this doctor will give you a TTT or not? You do NOT have to faint to fail this test. If you have any of the POTS symptoms while standing, in addition to the increase in heartrate, that would be an abnormal response.

During the TTT, my hands and legs turned bluish. I felt headachy and bad and very uncomfortable. That is not a normal response to being upright.

I hope you get answers soon.

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I'm so sorry you are struggling with these things!!! Many of us here understand what you are going through but I know that doesn't take away your own personal pain.

It does sound like maybe this Dr you saw isn't a good fit for you.

Follow your instincts, rest when you need to (if you can) and keep up the fight. There are good Dr's out there but it indeed may take years for you to find one. I don't know where you live, what insurance coverage you have or your personal situation but I can say for me, going to one of the top facilities was a HUGE key for me. In the end, even though I haven't found any meds (or combination of) that really control my symptoms, one of the best things I did get was documentation in my medical file of NCS and POTS (along with some other conditions); since that time I don't fight with many Dr's on if I have a "real" illness or not. Local Dr's certainly don't know what to do but they don't treat me like it's all in my head either.

I had one top Dr tell me that with this disorder I would have to be my own best Dr and do my own research and find local physicians who would implement both what he suggested as well as what I learn on my own.

If there is any way you can go to one of the top facilities I would recommend it. It can be costly but in my case, it paid off because I quit having to pay so much for local Dr's who weren't doing anything for me.

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Thanks alot for you quick responses. Maybe I should just cancel with this doctor now and go to one of the ones listed on the web site. I think I will actually. Thanks for that advice because he's probably going to make me feel worse about trying to get some answers. I live in PA. The closest one is a couple hours away, but maybe I can just get my husband to drive me. I get very nervous on the freeways, expecially if my symptoms act up. It's well worth the trip if I can find someone who will say, "Yes, I know it could be this, and I can help".

So, those of you who do have POTS can have symptoms while sitting or laying down too? Is you pulse high at that time or can it be normal too? He made it sound like the pulse always has to be high when I'm having symptoms in order for me to have a problem that was related to the HR. He really let me down. I was so glad to find a doctor that did the TTT, but he didn't know anything either. I'm starting to wonder if I'll go though this my whole life not knowing why.

I just don't know how much more I can take of being so sick all the time and having nobody to back me up. Nobody knows why it happening or what kind of affect this is having on my daily activities, on my life. I dread going to work everyday but with all my bills, it's impossible to even call off for one single day. Thanks for the support. I do feel a little better about the situation now. I'll call my primary tomorrow to set me up with an actual POTS specialist.

Thanks,

Jen

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Hi,

I was misdiagnosed with a TTT by a supposedly top notch and it hurt badly my medical file. I could not get any doctor to treat me after because he had diagnosed me with Munchaussen. I had to go to another country to get a proper diagnosis and I lost 2 years of my life being bedridden because ot it. If I would have been diagnosed when I crashed it would not be disabled now!

So if you know ahead of time that the doctor does not know POTS you are taking certain risks.

I have tachycardia and high catecholamine supine but it is much worse standing.

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Jen,

It is very possible to have POTS symptoms while sitting, and even sometimes lying down. I have passed out standing, sitting quietly with my feet up, and lying down. Also, you can have other autonomic symptoms that might not correlate with your HR or BP. I can have bowel or urinary problems, fatigue, or brain fog and not have an exceptionally high heart rate at the time of the symptoms. POTS is just a collection of symptoms. I think you would feel really affirmed to be seen by a specialist. It's a lot easier to be diagnosed by a specialist than to educate a doctor to try to get a treatment. good luck!

Kristen

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Thedizzies,

No, I do not necessarily have a high heartrate while I'm having other symptoms. It isn't necessarily the high heartrate that causes symptoms; it's dysregulation of the autonomic nervous system. In my case, I feel like it's "lack of bloodflow" to the brain, or blood pooling in the lower extremities that causes symptoms at times.

Also, my blood pressure goes up on the TTT, not down like some people here.

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Guest CyberPixie

Did I read correctly your taking florinef? If so , your blood pressure is more likely to go up while standing. Mine used to drop until I was on florinef, now it goes up when I stand because of taking it.

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Thanks for letting me know that it's not abnormal to have POTS and still feel symptoms when sitting or laying. I was definelty starting to doubt myself and thought maybe it is just anxiety or just in my head.

I did make an appt with on of the doctors listed on the website. My insurance doesn't cover him or any other doctor who was suggested to me, but my PCP will try to get me approved for the visit. I asked the receptionist if he knows about POTS, dx and treatment and she said he does. She said he himself doesn't do the tilt table test, but he will send me somewhere to have it done. I'm not sure now if I should just wait to have the test done by whoever he will send me to, or if I should just keep my TTT scheduled with the other dr. who didn't know about POTS, because I already have the test scheduled for the 1st. I'm not even sure if he'll know what to look for. But, if the test does show any abnormalities, maybe I could just go to this other doctor with the results of the TTT, and simply not follow up with the one who does the test. I don't know.

About the Florinef, yes, I started it a week ago. My BP at the doctors office yesturday was 130/90. That's very high for me. I actually made me nervous. I didn't know if it went up after standing or not yesturday, so I checked it right now and this is what I got.

Sitting 106/59 P 79.

Standing 93/67 P 113.

So, I guess it's not raising my BP to stand, except for the diastolic. Thanks for all the advice again. I really appriciate finding these boards. I've learned so much already.

Thanks,

Jen

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Hi, I'm sorry you are having so much trouble. I think that every one of us has gone through something similar at one point in time.

I, too, had a list of symptoms that I took to the doctors to see if they could diagnose me. Because the symptoms seemed so diverse and unrelated, there was no way I could remember all of them, and I didn't know which one would be "the one" that would clue in the doctor. Finally, a friend of mine who is a

GI doctor, asked me to e-mail him my symptoms and he is the one who figured it out! He said that he noticed that all of the symptoms pertained to the autonomic nervous system, so he knew it was a dysautonomia. Smart guy. So, this list is what saved me. You are not obsessive, just concerned!

I saw a POTS specialist in Dallas who also indicated to me that because I was having so many symptoms even when lying down, he didn't think my symptoms were just POTS. And this was a guy who was supposed to know POTS!!! Anyway, I went to Mayo and within 12 hours, I had the diagonosis and treatment plan. Basically, the doc said that POTS affects so many areas of the autonomic nervous system, that the system is basically "broken". I do not think it is just a postural problem, speaking from experience. I have every single symptom on the list, except fainting, and they come and go in ANY position.

I would echo everyone else's recommendation that you need to find a good doctor. I went through over 15 of them! (I can't tell you how many thought it was anxiety!!) But now, I am doing better (year and a half later) and I am starting to believe that it will eventually be a non-issue. I have an excellent neurologist and PCP, and can return to Mayo if I need to. Much of the treatment is trial and error , so after the diagnosis, almost anyone can help you (but you have to bring them the research much of the time!).

Please hang in there. With the right doctor you WILL get better, but I caution that is takes a long time...

You can call on us anytime, meanwhile.

Diana

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If it were me, I would wait to get the TTT with one who knows because the doctor who understands POTS will know what OTHER symptoms to look for besides increased heartrate on the TTT. My neurologist wrote down the other stuff as well such as bluish color to legs and hands, feeling fo heaviness in legs, headache, etc. He knew what to ask me during the TTT.

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Guest CyberPixie

Florinef can take awhile to kick in.You'll get some effect from it in a day or two but it's one that needs a few weeks to really get going. Plus there's working out how much you need and how best to take it for you.

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I know it can be a hassle, but it might be worth the effort to see a doctor who is familiar with the diagnostic criteria for POTS, NCS, and other ANS problems. I, too, went through years of thinking I must be crazy, or lazy, or depressed, or making it up... but in the end, I have both POTS and NCS. Only took the right doctor to have me for 15 minutes on the Tilt Table Test to be able to say without a doubt "I know what's wrong".

Life's too short to waste time and money on a doctor who's not willing to be a good detective on your behalf.

PA doesn't have a huge number of specialists, but there are a few. I'm within minutes of Philly, and we really don't have anyone here. I've traveled to NY and OH for care and accurate dx /treatment.

Good luck and don't give up. Nina

Oh, one other thing...you need to be off meds for the TTT to be accurate. Florinef takes WEEKS to leave your system and if you're taking it, it needs to be weaned off of carefully and slowly, as stopping suddenly can provoke worsening symptoms. If you're taking meds during the test, the meds could mask the problem(s) if they are there.

Nina

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Thanks everyone for the replies. I decided to take your advice and just cancel the test with the other doctor. I just hope that this one who was listed on the site is going to know everything about POTS. If I go to him, and he doesn't know at least everything I know about it, then I'm just going to scream!

I only take 0.1mg of Florinef...so, I don't think I'll need to wean, right? I think that's the lowest dose and I only take it once a day. Maybe I should just stop it now before it starts to have to much affect on me. I don't know when I'll get to do the TTT. My appt with this specialist isn't until March 10th and then he'll have to get me scheduled for the test. I wasn't even going to start it until I got my test done, but then my symptoms started to become worse than normal each day, so I couldn't wait anymore. I was despirate for something to help me.

Thanks so much for all the support and advice again. You guys are fantastic!

Jen

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