New Member Who Is Really Scared, Can Anyone Help?

[shoegal]

I have had sinus tach of unknown cause for 11 years and take a beta blocker, 3 years ago I had my first SVT and had awful issues while pregnant. Low BP, low blood sugar, high pulse etc.

Had the baby, and it didn't stop. They thought I had low adrenal gland function this year since my tests were low but the doc isn't so sure now.

I get funny palps every day and SVT's every month usually with cycles of when the low sugar and low BP is worse.

I've been under a lot of stress (family disaster) and now the last 2 weeks lots of high morning HR's up to 160 and SVT's and funny flip flop things with so many quick beats in a row. I feel so scared all the time. I never had this before. I also have clamy hands and feet and chills.

Whenever I get the SVT I get chills so bad it looks like a seziure. The docs say they have no idea.

My husband came across Dysautonomia the other day and says it sounds like me. The electrophysiologist (who I need to get back to) said I had inappropriate sinus tach which is part of the family?

I'm taking anxeity meds which aren't helping, I'm still scared. My general doc thinks it's all just panic attacks

[Godsgal]

Hi Shoegal, I'm Godsgal (although I like shoes also)

I know what it feels like to be the newbie....not fun. I would suggest you find an electrophysiologist that is familiar with POTS and speak to them about your symptoms. Ask if they can do a tilt table test on you. That would be helpful. It's all about finding doctors that are familiar with POTS so you can get treatment if in fact that is what you have.

Anxiety and panic attacks. Just chalk that up to ignorant medical people. You will find all of us on here have been accused and dismissed of that.

We all understand on here the fear that comes with these symptoms. Research as much as you can and please read the what to avoid and what helps section on the home page if you haven't already.

Take care

[lieze]

Hugs shoegal.

Stress always makes my symptoms worse.

I know this is difficult but if you can you may need to slow down your pace a bit and let your body relax.

I know as mom's we have way too much to do to even think about that.

As far as the anxiety/panic it's all a vicious cycle.

Stress can aggravate our heart activity for some and then all those horrible feelings in the chest just feel like someone has launched a small grenade right into out chest cavitiy.

Try to take a deep breath.

I have lived with the incredible fear too and I know how horrible it is.

It's not necessarily logical-you just want to feel safe and okay again.

I'm very sorry about the recent disaster you've had.

One day at a time.

Don't feel like you have to stop seeking help.

You don't have to accept that this is all anxiety/panic.

It's just one aspect of what you are going through, and I think normal for anyone feeling the sensations you are feeling.

[autumn]

Have you worn event monitors and had a full cardio workup -- stress test, echocardiogram, etc.? Even if you have, I would think that because your cardiac events are happening more frequently and it sounds as if a new type of beat is present, it would be worth having the routine done again. The doctors need to catch the arrhythmia episodes and to determine that your heart is structurally sound. If your arrhythmia runs can be induced, they might be able to do an ablation. Depending on what the other beats are, your doctors might be able to adjust your medication to something that will work better for you (from a beta blocker to a calcium-channel blocker, for example; my doctors said they'd never give me a beta blocker for my inappropriate sinus tachycardia). Keep in mind that often, the weird/flippy/skipped beats can feel so much scarier than they actually are. For some peace of mind at the very least, it's worth wearing a monitor so you can see what's actually going on.

Long before my POTS was confirmed, I was diagnosed with ventricular tachycardia and inappropriate sinus tachycardia. The holter and event monitors (I've worn four over the years) have also caught PVCs, PACs and SVT. The runs of these feel SO scary, especially the v-tach, but I've had multiple cardiologists/electrophysiologists confirm that they're nothing to be concerned about -- in light of my other test results, anyway.

You can also request a tilt-table test, as Godsgal said, to determine whether this could be POTS. However, even with the POTS diagnosis, you and your doctors need to have a better idea of what's going on with your cardiac issues so you can treat the specific symptoms that come with them. POTS is a syndrome, just a group of symptoms, and the symptoms still need to be addressed appropriately.

And an aside/lesson I've learned: In my quest for some sanity and anxiety-reduction with regard to my cardiac issues, I've learned that Googling all these arrhythmias comes up with seriously scary information that really just may not apply. V-tach, for example, is often described as a potentially deadly arrhythmia that requires immediate attention. Even medical professionals freak out when I say that I have it. However, because my heart is structurally normal, it's really not a dangerous arrhythmia at all. I worried myself sick over whether I was going to die in my sleep, and that was just plain stupid. Find a doctor you like and trust, and don't be afraid to seek out a second or third opinion. Once your test results are in, ask for a copy before you walk out of the office; having all your results in your possession will make things easier if you have to see another doctor and/or move to another practice, especially on short notice.

Lots of hugs and luck to you, shoegal. I know how scary this is.

[shoegal]

thank you so much for the replies everyone. They are going to try to get me into the EP doc next week, the nurse said she can't see me, she'd not be able to help.

GP did another EKG today which was normal, it's been 3 years since my last echo.

I also looked up PTSD and it fits a lot of how I've been recently. A few of the meds they list give low BP, so I'll pass on them.

I had non sustained vtach on my monitor at the ER recently, I know I get something which is a PVC like feeling then 6-10 quick beats then fine and it scares the heck out of me and makes me a bit dizzy.

A doc did a sort of tilt table test once and I failed

[autumn]

It sounds as though we have similar cardiac issues, shoegal. I'm on a calcium-channel blocker for my v-tach and IST, though it's hard to say whether it helps with the latter. It does, however, keep my v-tach episodes nonsustained, which is nice. My EKGs have always been normal.

Press your EP for more testing and answers. You're armed with more information now -- about POTS and other avenues to explore.

Please keep us posted.

[ramakentesh]

it could be anxiety or panic attacks - but it also could be POTS. POTS often gives people adrenalin surges and in general when Im feeling POTSie I tend to feel on edge.

[Friedbrain]

Anxiety can definitely make symptoms-ANY of my symptoms-worse, so try to find some ways of giving yourself some TLC (this from an expert stresser, so I know how hard that is, especially when you can't control the stress!). I've been trying to find ways, too-like hot tea (I'm not a big tea drinker, but I do find it slows me down to drink some), or a hot bath.

If you would like, you could share your adrenal challenge test results with me, and I can tell you what I have learned. There's a lot more on the web on how to interpret those results than back when I was first diagnosed with adrenal insufficiency. http://en.wikipedia.org/wiki/ACTH_stimulation_test is a site that I found to be REALLY interesting to use while comparing my old stim test results. 8 ys ago, my endo said it looked like maybe my borderline results were supportive of adrenal insufficiency so put me on cortef, and I was like a New Woman. I've been on it ever since, and I can't seem to go off it (which a new endo wanted me to do in order to re-test for herself) without all sorts of horrible symptoms returning. Anyway, while the guy said my results were "borderline", when I look at them in terms of the whole picture instead of a cortisol level that only kinda increased, what *I* see is a possible misdiagnosis!!!! My baseline cort was LOW (6) and tripled to a low of 18 when stimulated by ACTH. If you ONLY look at one result (er, which you shouldn't), it may look like a borderline response; however, if the doctor bothered to note that my baseline ACTH and aldosterone were ALSO low, and that my aldosterone level did not even double.... the interpretation based on that information suggests that it may be secondary or tertiary failure with atrophy of my adrenal gland. And THAT makes sense.

Anyway, I don't know your doctor, but I have years of experience trying to find endos familiar with adrenal dysfunction (and failed) because of my multiple moves....MOST endos do not have expertise with adrenal glands because they have spent too many years treating their moneymaker-diabetes. So in this case, it would be in your best interest to double-check the results yourself, and then talk to the doc about them. I wish I had back then. (I need to make a list of things to ask my new doctors when I find them after moving!)

Also, fwiw, my mom started having middle-of-the-night "panic attacks" when I was in college (in her early 40s). In my mid-30s, I started having middle-of-the-night seizures that, once somewhat controlled by anti-epilepsy medications, started resembling her "panic attacks". Mine weren't "panic attacks", and neither had hers been. It's an easy diagnosis for unknown events, sometimes

[ramakentesh]

POTS can cause autonomic storms - either adrenaline surges to combat blood flow abnormalities or perhaps extreme parasympathetic withdrawals.