Dysautonomia (Autonomic Dysfunction) Community
POTS, IST, and Support
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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POTS, IST, and Support

Hi everyone. I know I am new and I know this is a long story, so I hope you will read.

A few months ago, I woke up in the middle of the night, and basically was covered in a cold sweat, and passed out in my bathroom, or at least they say I did. I don't think I ever really lost conciseness, but in truth, I remember thinking "I'm going to fall" and then being on my back on the floor. I have a diagnosis of Inappropriate Sinus Tach and I have for about five years. I thought that waking up in the middle of the night was a cold, virus, whatever, and went to my primary care doctor, who ordered testing and thought it was neurological because I have a neurologically based disability. The CT came back fine, and the symptoms I had abated somewhat, so I sort of let it go because, let's face it, I didn't want to deal.

My symptoms have never been noticeable before that night. I never noticed the IST before that night. Since then, I have had lightheadedness, palpations, shortness of breath, inability to regulate my body temperature. I honestly thought that I could manage. Those symptoms were manageable if annoying and challenging and befuddling. I wrote them off as maybe a winter slump, part of my disability, whatever. The fatigue was challenging but workable, as was the constipation and back and neck pain. It isn't now, after that cold three weeks ago.

About 3 weeks ago, I got sick again with a cold or whatever, and since then, my symptoms have been really debilitating. I can't eat. When I do eat, I either throw up or get so nauseated that I never want to eat again. I'm so tired. I can't regulate my body temperature. My heart rate goes up when I stand in line, I get so dizzy sometimes that I almost black out, though I can't measure it.

So I went to my cardiologist. I told him about the two really bad episodes of these symptoms, told him that this time, they haven't really gone away, told him that I can literally feel my heart racing and the blood moving around. I'm so tired, even though I do have good days and bad days. I have good hours and bad hours insofar as the symptoms go.

But the thing is, everything I said, and he basically looked at me and told me they had nothing to do with my IST and to get a sleep study if I was exhausted and not having good mornings. I tried to talk more about my heart and the way it feels when I stand up and sit down and move around, and it was clear to me that he thought I was pulling things out of my behind, though he was professional and spent time answering my questions. To a point, though, I really couldn't explain because I wasn't sure he was hearing me and I started to think I was being ridiculous. I felt that way, anyhow.  

He told me to increase my salt intake, make sure I'm drinking water, and be sure to work out. He also said to stand still for two minutes before I move but that I likely wasn't feeling well and would need to do self-care. I know these are all good things to do and are things I am trying to do because they do make sense.

So then I went in the bathroom there and tried to figure out how I was going to handle the symptoms. I'm on beta blockers now and have been for years, but he can't increase them because he thinks that the tunneling of my vision may be blood pressure. I literally could not figure how I was to eat if I was throwing up. I guess I felt really invalidated sitting there.

These last few months have been really tough on so many levels. So yesterday, I decided to call the Cleveland Clinic and get an appointment to be evaluated. I like my cardiologist, and I know he's interested in my care. I value his opinion. But at the same time I know that going is a good idea because I just don't know how to manage and I really feel like I can learn from at least ruling out a autonomic disorder or finding ways to manage in new ways.

Please tell me it's normal to have good days and bad days. The last two weeks have been so awful that yesterday I actually said, "I can stand up without feeling like I'm going to pass out. Maybe I don't need that specialist." But the feelings come and go, even as I am perpetually exhausted and only feel marginally okay in my bed. I am worried that I will be wasting the specialist's time. Please let me know if you, as people who actually do have POTS and other related disorders, think there is value in my going. In all honesty, I kind of feel alone and hope that in putting myself out there a bit that I can internalize that I am doing the right thing and talk to people about the reality of what I'm feeling.

I would also like to thank you guys for this forum. Reading here has enabled me to find posts and people that I relate to so much.
2 Comments Post a Comment
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Avatar_n_tn
Good and bad days are so called normal. I have been dx for a year and basically you have to be your own dr. researching different meds for your symptoms. Are you in the Cleveland area? if so thats great theres a clinic near you. Im in Indiana and have to travel to Vanderbilt.
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Avatar_m_tn
Hang in there! My symptoms are quite similar and flared up again recently as well. I spend my time googling all I can and can suggest these search terms as relevant to your symptoms. Most doctors are not familiar with them so you have to research them yourself:

1. orthostatic hypostension: feeling dizzy when standing up. Well documented and diagnosed via a tilt table test (though no one seems to have one that I know of)
2, postprandial syncope: this causes chills or sweats, heart palpitations, nausea and vomiting, leading to syncope (passing out, fainting) I have this.
3. neurocardiogenic syncope: formerly called vasovagal syncope, can be triggered by 100s of different things, including eating, needle stick, sight of blood, etc. I have this
4. post-viral dysautonomia: episodes can be triggered by viral infections such as cold or flu. I have this.
5. hypochlorhydria: low stomach acid (Hydrochloric acid, HCL) Taking HCL with Pepsin supplement (cheap, available everywhere) immediately improved my symptoms without adverse effects so I have this, though mainstream doctors will not suggest it or even approve of it.
6. fluxetine treatment for dysautonomia: Prozac and similar drugs are prescribed for this condition because our guts have even more neurotransmitters than our brains. I was taking this already for depression, another symptom of dysautonomia.

From what I can see, we are mostly on our own after the specialists have ruled out everything else. Find out as much as you can because you are the key to your cure. You can find your own triggers and learn how to manage them. Please let me know if I can help you.
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