Want To Ask Doctor To Look Into Dysautonomia, Any Tips?

[Hyuckaderp]

Hello, everyone. I'm 22 years old but I'm definitely not feeling like it.. at a certain point after feeling like crap every day, I asked my doctor to order some labs. She tested just about everything from hypogonadism to hyperparathyroidism but has not found a diagnosis. Upon coming across an article about POTs and reading the insightful posts here I'm beginning to wonder if I should suggest to her that perhaps it is some form of dysautonomia? I mean, is there some kind of test (norepinephrine) that, if it were off, would force her to admit something dysautonomia-related was going on?

Here are the symptoms that make me suspect it:

-My blood pressure from yesterday:

( sit ) (stand)

11:00:104/52 63bpm / 83/51 97bpm

1:00 109/50 60bpm / 103/44 75bpm

2:30 110/54 64bpm / 98/48 87 bpm

3:00 115/46 55 bpm / 84/49 82 bpm

7:20 117/50 69bpm / 112/43 84bpm

9:00 110/49 65bpm / 102/45 75 bpm

I do not suffer from fainting, however I do sometimes unexpectedly stumble or lose my balance when walking or standing from what I would attribute to lightheadedness.

-Lifelong essential tremor and chronic nervousness that multiple SSRIs have not brought any relief to whatsoever. I feel like my *** cheeks (figuratively speaking) are more clenched than I realize because I've forgotten what it means to be completely relaxed. Very bad temper and extreme mood swings as a child (still bad to an extent)

-Exercise intolerance - Poor stamina. When running at a distance most would find comfortable at a certain pace, I start to get lightheaded and I have to stop or I pass out.

-I know this doesn't necessarily mean I have polydipsia, but people are always in awe at how much water I'm able to drink and so quickly. As it relates to hypovolemia, I do have high albumin levels even though I drink a lot. I do have salt cravings as well.

-Fatigue - I feel like I just can't get through my day without a nap most of the time. When this urge comes on my BP is pretty low. I feel very zoned out all the time, thinking is slow and I never feel like I'm 100% there.

-Coarse/dry hair, hair loss: Appeared about 3 years ago, has gotten worse. Hair used to be very soft, fluffy, oily, curly; now it's dry, weak, thin, and full of dandruff. Hypothyroidism and other diseases have been ruled out, if dysautonomia is indeed the culprit perhaps inadequate blood supply to head is causing this? Also, oral temp of 97.4.

-Not sure if relevant, but stretch marks on inner thigh I got when I was 11 yrs old even though I was a very skinny kid.

Help would be much appreciated.. I'd just like to know how I should proceed with my doctor. She is pretty open-minded and understanding.

[Chaos]

Hi! Welcome to the forum. One way you could get some good info to give your doc which might be helpful would be to do what's called a poorman's tilt table test.

Lie down quietly for 15 minutes or so. (or better yet do it first thing in the morning before you get up) and check your BP and HR.

Then stand by the side of your bed without moving and check your HR and BP at 1 min and every couple minutes after that up until 10 minutes.

Record those numbers as you do the tests.

You might want to repeat this test over several days as symptoms vary from day to day in a lot of us. Also some of us notice that our symptoms are worse in the morning so you might want to do this when you first wake up.

A diagnosis of POTS is made when your HR increases by 30 beats or more between lying down and standing up, or if your HR goes over 120 in the first 10 minutes of standing. There are other forms of dysautonomia as well so if you don't meet the criteria for POTS there may still be other abnormalities going on. The PTTT will help give you some concrete evidence perhaps to show your doctor.

Good luck!

[HopeSprings]

A couple of those sit/stand readings would qualify as orthostatic hypotension and you had the 30 point jump in heartrate on that first one. I would do what Chaos suggested, then bring that info, plus maybe an article to your Doctor and ask to be referred to someone who deals with dysautonomia. Or just find someone yourself. A blood test isn't really enough - you'd want autonomic testing done.

[Hyuckaderp]

I finally had the time and courage to write an e-mail to my doctor. If she doesn't reply within a couple of days, I'll give her a call. I took your suggestion, Chaos, and checked my BP/HR for 10 mins while standing. The results were as followed:

laying down: bp 121/55 hr 66

standing 1: 118/61 90

2 122/64 87

3 123/64 87

4 111/63 93

5 121/58 91

6 117/50 85

7 102/63 87

8 109/53 93

kinda all over the place, not sure about how accurate this omron device is either.. anyways, I'll keep you guys up to date if any developments come along or I need guidance on what to do next. Thanks for always being so helpful.

[Libby]

Hi! Welcome to the forum!

Your BP numbers remind me of my TTT, actually. It doesn't look like you'd be diagnosed with POTS, but you may be on your way to syncope. Neurocardiogenic Syncope/Neurally Mediated Hypotension/Vasovagal faint (there's a lot of names for the same thing).

Here are my numbers, just so you can see how mine played out:

0 Degree 15 min BP 116/69

70 Degree 1 min BP 123/69

70 Degree 2 min BP 129/68

70 Degree 3 min BP 120/66

70 Degree 4 min BP 119/65

70 Degree 5 min BP 118/64

70 Degree 6 min BP 117/55

70 Degree 7 min BP 124/50

70 Degree 8 min BP 109/47

70 Degree 9 min BP 108/50

70 Degree 10 min BP 115/37

Comment of feeling hot and nauseous

70 Degree 11 min BP 106/35

70 Degree 12 min BP 106/36

70 Degree 13 min BP 98/34

70 Degree 14 min BP 98/28

70 Degree 15 min BP 70/22

Comment of loss of vision

The pattern of sort of one of the two numbers holding steady, then a big drop, then holding steady/rising a little, then dropping, that your numbers have makes me think that if you stood for at most another 10 minutes, you'd drop. You might want to ask for a TTT, specifically. I had never fainted either, before that day (though I think my doc had to put syncope on the prescription for the TTT to get insurance to cover it.). And actually, I was still conscious at the end. Just feeling really crappy lol.

[Batik]

I am still in the middle of the referral process, but here's what I've been doing. I wrote to my GP, talking about the symptoms that were bothering me (just the POTS-like ones - I have other medical conditions too), giving her a few of my more striking BP/HR measurements (no point overwhelming them), saying that it had been suggested to me that it may be POTS, and enclosing a factsheet about POTS from a respected organisation. Last time I spoke to her, she said she'd been looking into it. Today she visited, and we agreed that it sounded very much like me. She asked if I wanted to be referred to a cardiologist, and I told her about the specialist I've been recommended to see, giving her a copy of a paper (dead on topic, of course) by that specialist. She is looking into referring me, and meanwhile we are discussing the possibility of a 24 hour BP test and/or a 24 hour ECG. So it seems to be going well. You need to pick your info carefully, you don't want to overwhelm them with pages of readings or multiple medical articles.

[Hyuckaderp]

I've been experimenting with a low dose of prozac daily (5mg) and I'm pretty sure that it lowered my HR a bit for that latest series. I'm going to go off of it, because I can't have it interfering with a diagnosis. Oddly enough, it seemed to be helping my anxiety more than high dose SSRIs ever did (which is to say, they haven't) but it's also making me moody and tired. I'm also getting these tiny hairs sprouting all over me: on my hands, in my hairline (which is receded), on my chest and stomach... perhaps a result of vasodilation? This has also happened upon starting other SSRIs, but I've never made the connection until now.

I've only fainted once in my life, and it was after I'd been chasing some kid during elementary school lunch. I've come close many times, and exercise has always been the provoker.. it's a feeling of breathlessness and malaise that comes over me. It angers me that most doctors would find all of my symptoms pretty unremarkable. Each of them separately are indeed pretty unremarkable, but all together, don't they at least suggest something is going on?

[Batik]

Only to a doctor who is familiar with the conditions in question. Going to a GP and saying that your hair growth has changed in a funny way since starting SSRIs will probably get you nothing but strange looks. Try going along, bringing a leaflet on POTS (nothing too long), saying that your HR jumps by up to 34 when you go from sitting to standing (though if you can try a lying-to-standing test, I recommend that you do that) and that your BP drops markedly as well (give one example), that you're having problems with dizziness which cause repeated stumbles and near-falls, near-blackouts for levels of exertion that used to be manageable, that you're very fatigued, and I'd measure your fluid intake for a day and tell them what that is as well. Don't overwhelm them with detail. Work out who you want to be referred to locally and then ask for that. I took the print-out leaflet from this site, and also filled in their blackouts/falls checklist.

[looneymom]

My son had been sick for almost 7 months before he saw a headache specialist. This doctor did the poor man's tilt table test on our son and suggested that we get an official tilt table test done. A cardiologist usually runs this test but getting into one can sometimes be a problem. Hopefully your doctor will take your concerns serious and can get you in to see one soon.