Presyncope Or Something Worse

[angelloz]

Hello,

I am 53 years old and was diagnosed with autonomic problems and low blood volume at the Cleveland Clinic about 3 years ago. I have episodes where I am light headed, vision goes fuzzy ..lay down slowly feel better...those feelings I get.

Then I have spells where I am weak, shaking, heart is pounding hard but blood pressure may or may not be that abnormal,I feel like I am dying though it is hard to put into words. I of course fall to the ground unable to stand but laying down does not decrease my symptoms. Sometimes I wait it out at home feeling like what will happen will happen and may recover a bit after an hour. Sometimes I have gone to the ER. usually very orthostatic and am given fluids. I try to keep breathing slowly because it is hard to breath due to weakness. I stare at something and try to stay conscious. I may have nausea, excessive urination, oh so weak. Does anyone have episodes of this severity?

I have elevated tryptase and am looking into mast cell issues. Also, multiple thyroid nodules and elevated thyroid antibodies. I have other symptom questions but will start with this one for now... Thanks to all who share their thoughts and ideas. Maybe all these heads together are better than one doctor:) Angelloz

[songcanary]

Before I got diagnosed I had those exact same symptoms. It was scary to say the very least. I had four ER visits; they thought I was mental. Once I got on meds and salt/fluids, I slowly got over those episodes. I was diagnosed at CC, too.

It took me two years from diagnosis to start feeling like I might pull out of this. But I must emphasize that the progress has been very slow; it's been a two steps forward/one step back process. I do not have elevated tryptase but I suspect I have mast cell also. Fortunately I take doxepin for fibromyalgia, so I'm essentially treating mast cell at the same time.

[MomtoGiuliana]

What you are describing is not unusual for POTS. For me too, I would have episodes of feeling very poorly with the symptoms you describe. The weakness, for me, was one of the scarier symptoms. IV fluids can help.

I hope over time and with the correct treatment for your individual case, you will begin to feel a lot better. It can take awhile to find the right treatment and/or start to improve. Most people do improve over time--it helps to keep that in mind!

[ceindeg]

I know what you mean, when I get these episodes lying down doesn't help at all. In fact, it usually happens to me at night when I'm in bed, so was lying down to start with. Suddenly my heart is racing and pounding, I get electric pains in my chest and I can hardly breathe. Also get the nasusea and needing to get up to urinate a lot while it's happening. I usually wake up my boyfriend and he holds my hand and usually within a few hours it fades and I feel better. But yes, I do feel like I am going to die and it doesn't seem like a low BP episode to me - no fuzzy vision - but then I don't have a BP monitor so couldn't be sure. Always think it would be good to see a doctor while it's happening but the last thing I want to do in that state is sit through a journey to the hospital.

Last time this happened I'd had a couple of glasses of wine in the evening, but I definitely wasn't drunk. I've been scared to have a drink ever since!

[angelloz]

I think an issue for me is increasing salt causes SEVERE migraines and I can't stop vomiting...so not much ground gained. I do drink alll day long. The saline IV will even give me a migraine...I need to find a balance that will work for me. Thank you all for the encouragement.

[Soap]

Angelloz, it all sounds very familiar. I've got POTS and have had all of this. Most symptoms were slightly relieved by taking betablockers. Good luck to you!

[Kellysavedbygrace]

What you are describing is what I would call my "POTS attack.". Usually starts w me noticing palpitations and I'm always short of breath. My HR usually jumps high 150-200 erratically and then will shortly resolve in the lower 110-130s before returning to baseline in the 70s. Like you described I get very weak, shaky, and I feel like I'm going to die. I just have to tell myself I'm not going to die.

It helps if I've had lots of fluid /salt and have had Good rest w little stress. Oh and eating well is a big element too.

[Guest Alex]

Angelloz,

it sounds all too familiar - that's pretty much how I would describe my symptoms during an "attack".

sorry you're going through this as well.

Hope you have a good dr that is going to find the right treatment for you. For everything else you have your dinet buddies ;-)

Hang in there.

Alex

[angelloz]

Thank you all so very much for taking the time to reply. I appreciate it more than you know. Past two days have been bed bound and feeling pretty low....your sharing and kind words give me a boost.

Angelloz

[Angelika_23]

I can get these attacks after eating, or sometimes they come out of the blue. Very scary. Trying to "push through" usually makes it worse. IV hydration works for me sometimes. One time I had a very bad attack at a friends house and downed a very large glass of water quickly and ate some salty pita chips. That seemed to make the attack less powerful, but it still knocked me back quite a bit for a few days.