Family, Complaints And Fighting For A Diagnosis.

[joshrandall]

So basically, Im writing this thread because, my family all keep saying there is nothing wrong with me or I have a minor hindrance and it's kind of getting me down. Im not sure my case of pots is severe enough to warrant treatment, ill give you some info, so I went for a walk the other day pretty slow, my heart rate was around 120 the whole time, when I got in it took a while to settle down, and I felt pretty bad kinda like I'd been on a jog, flushed, quite dizzy.

I suffer with anxiety and depression and the whole issue kinda scares me. The other day, my sister asked me to bring her bag up stairs my HR was 150 after going up the stairs and I felt pretty out of breath. I found it particularly telling my sister said her hr was 140 and she was pushing extremely hard in the gymn. I can often find myself struggling with piecing my conversation together when Im talking with someone. It's like I think of what Im going to say then forget it then remember it 10 seconds later.

I seem to be more tired, but not extremely tired, some days I get muscle aches, and spasms, and knots/without any exercise. My hr doesnt always jump 30 beats if I stay still it tends to drop a bit lower sometimes just 25 but it does sometimes, and will always go up 30 bpm if I start walking, If I eat a big meal my hr can jump to 140/150 laying down and be pounding with ectopics. I often feel a rocking vertigo like feeling when Im laying down, its very brief but somedays last longer and is nauseating, I also get lightheadedness and brainfog, but this is worse certain times throughout the day and certain days. I also do struggle to remember things, or even details of an event that just happened.

My mother constantly tells me that because the doctors have told me there is nothing wrong, she does not think I should let it "rule my life". Or that it is really bad enough for it to stop me doing things or that basically it's no big deal its a minor hindrance, at times she even doubts there is anything wrong. My whole family do not believe there is anything wrong, nor doctors, as I have a history of mental illness. I have sat passionately speaking and refuting this to my mother and offered her countless bits of evidence, but she ends up agreeing and then I said you just agree for an easy life, there is no support whatsoever, and she nods. I am not the best person, I suffer with depression and I find it hard to do things, I dont have many friends, but this POTS has now made it even harder because it makes me anxious to go out or to do exercise. It seems because my life was already pretty bad and I was abit of a lost cause no one even cares I have this now, they seem to say, "well if its not one thing its another with you". or "your always not right though you" referring to my depression.

I have now complained to a section of a hospital, but Im slightly worried that if I end up being asked to do sit to stand, my HR wont make the jump 30 bpm it will if Im asked to lay for a couple of minutes but when i stay still a lot of time ive seen it drop down 5bpm, making the jump on 25 bpm not always some days it will hover at 117 and 120 others it doesnt sustain it staying still it drops about 5bpm, I have some pretty bad symptoms apart from that and I pretty much said that this nurse didnt investigate that and that I have signs of it Im also worried that maybe a tilt table test, it wouldnt make the jump and Id look like a fool for pushing this so vehemently, some days however my hr seems to hover at 110-115-120 just sat playing cards.

I guess what Im asking is, should I be fighting this hard for a diagnosis, I mean the other week I went to a concert and I felt quite lightheaded and your natural instinct is to want to sit down, I had to ask for a chair and I sat down all the way through. But I wonder could I have stood up and I was just anxious, about fainting, I know I felt lightheaded and it wasn't panic but what I mean is, is maybe I could have withstood the lightheadedness, but felt abit uncomfortable with the prospect of possibly fainting. Or would I become dizzier the longer I stood up, we are talking a good 2 hours here, so thats 2 hours id be expected to stand up feeling lightheaded. Does this warrant some help of some kind.

My family make me kinda feel like im making a mountain out of a molehill, and I know that I can do most things, but im quite uncomfortable doing them.

What do you guys think?

Thanks Josh....

[shathaway0811]

Josh,

I have faced similar issues, as well. My problem is primarily that both of my parents are physicians (my dad is a cardiologist, specifically) and because I have shown no majorly alarming symptoms (fainting, vomiting, etc.), they have often brushed aside my complaints as either being unproductive/unnecessary or somatic. I also have always had panic disorder and anxiety/depression, and the unfortunate thing about dysautonomia is that there are many overlapping symptoms. What I have started to do is emphasize my physical symptoms more to my parents and physicians during times when it is clear that my mental status is high-functioning and overall healthy so it can't be immediately dismissed as psychosomatic.

My parents also find it difficult to cope with the fact that I feel physically ill BECAUSE they're doctors and they have no answers. My dad told me it makes him feel helpless, which I understand, but I also want to be able to go to them for advice as they are obviously knowledgable resources. I've had to adjust that expectation, however, and realize I have to be my own advocate and not worry so much about what my family says or thinks because ultimately, I'm the one in pain/discomfort daily. I don't know about you, but I've gotten really good at hiding/dealing with it too so I'm sure on the outside, and to my parents, I seem fine.

Doctors are hard, in general... Some know about these things and some don't. I'm lucky to have found a primary care physician who is aware of dysautonomia and its subsets of disorders, but I've had a much harder time making headway with getting referred to specialists to confirm all of it. You just have to keep fighting for your health and being your own advocate. If you want to feel better, it absolutely IS worth fighting for a diagnosis because treatments can't happen without one.

Good luck!!

[statesof]

Hey Josh, I don't think that your story is very different from many of us; it took my doctors 4 years till they even considered autonomic problems as a diagnostic option, and my parents only believed that my symptoms weren't "just in my head" after a formal diagnosis was made.

It is a difficult path because many doctors don't know about POTS, and since POTS mimics other more common conditions it is easy for them to diagnose you as having those. I found I really have to explain how i feel on my worst days when i go in for appointments, or my doctors won't always understand the full picture. I think tilt table tests are the only good way for diagnosis, when they do the lay down stand up thing at appointments it's not really accurate enough to show my hr increase.

The most important thing I've had to ask myself is how are my symptoms affecting my quality of life? And usually that helps me to focus on why I find it important for myself to keep going to doctors, even after many less than helpful appointments. Also like you I struggle with depression and panic disorder, which POTS tends to make worse, but I find it has almost become a completely different task to work on those two areas. Mindfulness and meditation has improved those areas for me, it won't help my POTS symptoms at all, but it does improve my quality of life.

[DizzyGirls]

Your story is all too familiar. I agree with statesof in that you have to stop and think how this affects your quality of life and it reminds you of why you go to doctors. Only you can truly know just how bad you feel. This is one of those invisible illnesses and what people can't see, they tend not to believe. It sounds like you most likely do have autonomic dysfunction. My daughters' pediatric neurologist prefers the term autonomic instability. That is where everything tends to affect the whole entire autonomic system - he's not much for just calling it POTS, says it's so much more than that. I also believe that the depression/anxiety goes right along with it. It's so hard when family makes you feel like your this malingerer, but you've got to ignore them (I know, easier said than done) and get yourself better. It has taken me years to finally find someone who has a general working knowledge of all this, but we kept persevering until we found him. There is much more information out there now regarding Dysautonomia and the word has gotten so much more attention in the last few years. Clinics are starting to be formed because doctors are finally putting two and two together. I tell my family that it's too bad that these discoveries didn't happen 20 years ago, my daughters would be in better health.

[yogini]

Hi Josh,

It takes a while to figure out what works for your POTS. It is normal to be scared and not to know what to do. Do you depend on your family for income and support? Do you live with them? What I would do is try to take care of yourself first - so if your sister asks you to carry her suitcase, tell her no. It does not make sense to do anything to aggravate your symptoms.

Also, I have found that some people are easier to talk to than others. For the people that aren't as supportive, I try to tell them as little about my condition as possible.

You should ask your doctor whether to be worried about those HRs. Irregular HR and BP often comes with the territory with POTS. It is scary at first, but a fact of life. It might not make sense to worry about the numbers alone, unless there are other lasting symptoms.

[abizzle229]

It is a good thing you are a member of this support group! I am sorry your family isn't more supportive. I agree that you do need to think of yourself first, and not push yourself to with the results only you feeling like crap. I would keep fighting for a diagnosis, because a HR shouldn't be high like that. This can be very scary, especially the unknown and little support. We are all here for you! I think with the concert, it was good you sat. My motto is it is better to play it safe than sorry. You would have hated to have passed out at the concert, and/or been miserable through it. You wouldn't have enjoyed yourself, but by sitting you were able to see the entire concert! I don't think there is anything wrong with that! Hang in there!!!