I'm having multiple odd episodes that are keeping me undiagnosed. Help

Posted by johnwes5819 @johnwes5819, Mar 10, 2019

Hello,

I posted before in another group in its entirety but I think it’s too broad and there could be a multitude of theories and explanations. So I’m going to break my story down into my most bothersome episodic symptoms. To start, everything on the surface looks like panic disorder or anxiety. However, my different episodes seem to be helping each other keep me feeling frantic more days than not so on the surface it looks like anxiety. I’ve had lots of lab work testing including thyroid, Lyme, sleep apnea home test, brain MRI, spine MRI, abdominal ct scan, and way too many doctor visits with no answer, but they do agree on one thing. The symptoms are weird and seem to be more than just anxiety. There are little bits here and there but unfortunately not enough to go on.

Keep in mind these episodes aren’t all going on at the same time but they’re not giving me any recovery time and feel like i’m sinking further down the hole. It’s like fighting 5 bullies one at a time and losing. Just as you feel like you can get up another bully hops in.

Episode 1: After waking up with head pressure, teeth chattering, shivering, lower back pain, and sweating. Oral temperature is ALWAYS between 93.8 F and 94.8 during these episodes. Also, every day is constant cold hands and feet that never happened until all of these episodes started.

Episode 2: Brain fog, head pressure that feels like you’re being pushed down when standing (like when you’ve had one too many drinks), usually later in the day when that feeling wears off, I’ll have adrenaline body tingling, uncontrollable thoughts of self-harm and head chatter. (Not dwelling on things or worried about things, it’s just the mind doing what it does and I have no control.) Also, my eye will twitch like crazy before and during these.

Episode 3: When standing for a long period of time, like cooking or washing dishes, and sweating starts to happen my heart rate increases and get extremely dizzy and feels like I’m being physically pulled down.

Episode 4: An overly excited feeling, almost like needing to yell or run to get adrenaline out, Heart rate is low.

Episode 5. Sharp colon pain, yellow stools (frequently), stools that look sickly or unhealthy, and constipation more often than not. I had a colonoscopy recently and I was told everything looks good.

I’ve tried SSRI’s and benzodiazepines and they don’t stop these episodes from occurring. I’ve tried strict diets and those don’t help.

If you have any thought about even one of these episodes please don’t be shy to comment. Thank you so much for taking the time to read.

@contentandwell

@afrobin My doctor avoids drugs also. I am borderline high blood pressure but so far he has not put me on a medication for it. He knows that I abhor how many drugs I am already on — immunosuppressants, a PPI for Barrett's Esophagus, and levothyroxine for thyroid — so he is not in a rush to push more.
I know too that he really tried to figure out what was wrong with me before a non-alcoholic diagnosis was finally made by a neurologist, but I really don't know how with all the symptoms I had he missed seeing what should have been obvious. My hematologist commented that if anyone would get to the bottom of what my problem is, it would be my PCP. Unfortunately, he did not though, and that could have cost me my life.
JK

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You may have several things. You may have POTS (Postural Orthostatic Tachycardia Syndrome). The heart is not strong enough to pump blood to the extremeties when you stand or sit, but lying down helps. (episode 3)
You may also have low thyroid and a symptom of that is sensitive to cold. (episode 1)
You may also have celiac disease and that's why you are often constipated and have yellowish stools. Both can be symptoms of celiac disease. (episode 5) Have you tried the elimination diet to see if food bothers you? With celiac it is wheat/gluten.

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@airey2

You may have several things. You may have POTS (Postural Orthostatic Tachycardia Syndrome). The heart is not strong enough to pump blood to the extremeties when you stand or sit, but lying down helps. (episode 3)
You may also have low thyroid and a symptom of that is sensitive to cold. (episode 1)
You may also have celiac disease and that's why you are often constipated and have yellowish stools. Both can be symptoms of celiac disease. (episode 5) Have you tried the elimination diet to see if food bothers you? With celiac it is wheat/gluten.

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This is incorrect information. Having POTS does NOT mean that your "heart is not strong enough…" It means your sympathetic nervous system is – to use non-medical terms – out of whack. In medical terms, POTS describes a common form of autonomic dysregulation characterized by excessive tachycardia (your heart beating over 100) upon standing in the presence of orthostatic intolerance. In other words, when you stand up, your autonomic nervous system doesn't send the correct signals quickly enough to tell the blood in your lower extremities to get it back to the heart to be pumped to the brain in a timely manner.. so you may feel light headed or even faint. Let's be careful not to frighten people into thinking , if they have POTS they have a weak heart. That's wrong. Just being deconditioned is often a cause and slowly getting back in shape can turn POTS around. Please see the NIH for correct information on POTS: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page

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@slynnb

This is incorrect information. Having POTS does NOT mean that your "heart is not strong enough…" It means your sympathetic nervous system is – to use non-medical terms – out of whack. In medical terms, POTS describes a common form of autonomic dysregulation characterized by excessive tachycardia (your heart beating over 100) upon standing in the presence of orthostatic intolerance. In other words, when you stand up, your autonomic nervous system doesn't send the correct signals quickly enough to tell the blood in your lower extremities to get it back to the heart to be pumped to the brain in a timely manner.. so you may feel light headed or even faint. Let's be careful not to frighten people into thinking , if they have POTS they have a weak heart. That's wrong. Just being deconditioned is often a cause and slowly getting back in shape can turn POTS around. Please see the NIH for correct information on POTS: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page

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Thank you for the information. When I mentioned to my cardiologist that my HR can go up alot from lying down in my bed to getting up to go to the bathroom, and sometimes in my walk for no reason, his answer is the same as yours.. "conditioning". I do not feel faint or out of breath when thus happens. Actually I didn't know I even have this until I got my fitbit and notice this irregularity. I'm trying to get myself back to shape even though I have hip and leg pains. Hopefully it will get better.

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