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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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Martin Jensen, Volunteer Mentor | @predictable | Mar 25, 2019
In reply to @jenniferhunter "@predictable Martin, I understand now why you wanted to make sure everyone understood the issues with..." + (show)
@jenniferhunter

@predictable Martin, I understand now why you wanted to make sure everyone understood the issues with Vitamin K and Warfarin. Do you have a choice in which blood thinner your doctor prescribes? Would one of the newer ones be a better choice if you forgot to take it once in awhile? Do you monitor your blood pressure too? I'm glad that you are able to talk about your experience and what you learned. My mom's issues with blood clots in her legs are because she can't walk very well and is sedentary in a wheel chair. Her Eloquis is expensive, but it doesn't require the regular blood testing of Warfarin. She's on it as a preventative now.

Jump to this post

Jennifer, I have studied the literature on the anticoagulants and remain committed to Warfarin (Coumadin). When I started on it, it was the only anticoagulant that had a ready antidote. That became crucial to me after a friend and neighbor on Warfarin died when the ER to which he was taken by public ambulance had no Warfarin antidote on hand, so they called for a helicopter to take him to another hospital. He died enroute from a brain bleed. I sang at his funeral.

There are now two anticoagulants for which antidotes are on hand in ERs that care about the quality of their life-and-death services -- for Warfarin and Pradaxa. No antidote for Eliquis has yet been approved by the FDA.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 25, 2019
In reply to @johnwes5819 "@jenniferhunter Thank you for the info. I was already aware of this. After I was taking..." + (show)
@johnwes5819

@jenniferhunter Thank you for the info. I was already aware of this. After I was taking vitamin 50,000 IU of vitamin D3, a few weeks later was when I had my first kidney stone. After I passed the stone I started taking 100 mcg of K2 daily to accommodate access calcium. Glad to hear someone else knew this. Thanks for the reply.

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@johnwes5819, @jenniferhunter Oh my goodness. That happened to me after being prescribed a high dose D3 regimen. Kidney stones. At the ER they thought it couldn’t be a kidney stone because I was female. Thanks for connecting the dots for me. Be safe and protected today. Chris

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 26, 2019
In reply to @predictable "Jennifer, I have studied the literature on the anticoagulants and remain committed to Warfarin (Coumadin). When..." + (show)
@predictable

Jennifer, I have studied the literature on the anticoagulants and remain committed to Warfarin (Coumadin). When I started on it, it was the only anticoagulant that had a ready antidote. That became crucial to me after a friend and neighbor on Warfarin died when the ER to which he was taken by public ambulance had no Warfarin antidote on hand, so they called for a helicopter to take him to another hospital. He died enroute from a brain bleed. I sang at his funeral.

There are now two anticoagulants for which antidotes are on hand in ERs that care about the quality of their life-and-death services -- for Warfarin and Pradaxa. No antidote for Eliquis has yet been approved by the FDA.

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@predictable @artscaping This has been an interesting discussion and we've learned a lot by sharing experiences. I'll ask some questions of my mom's doctors about Eloquis. I wasn't aware that having an antidote for a blood thinner could be an issue. Thank you.

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gemttaz | @gemttaz | Mar 26, 2019

I didn't have all of those just some and I have Guillian Barre Syndrome and I am almost sure they done know why or how its starts, but it has some of those symptoms.. Sorry I don't have more positive words.

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johnwes5819 | @johnwes5819 | Mar 26, 2019

Thought I'd share another "episode" that may or may not be helpful. Another part of having chills and shakes. Usually is accompanied by diarrhea, frequent clear urination. I'll drink the normal amount I always drink to stay hydrated but it's nothing over the top. But lots of clear urination is usually following the chills, shakes, and diarrhea.

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jo81 | @jo81 | Mar 27, 2019

In regards to your cold hands and feet, have you been checked for Reynauld’s syndrome? I have it and it causeas my hands and feet to be very sensitive to cold.
It’s just something to think about...

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1 reply
slynnb | @slynnb | Mar 27, 2019

@johnwes5819 Again, the one thing that all those symptoms could be explained by - that I know of , at least - is dysautonomia,..and there are many , many types and causes of dysautonomia. It's often missed by physicians because it's not something that shows up on"regular" tests and blood work. Diagnosis relies on carefully listening to symptoms, tilt table tests, etc... If this has been ruled out, I might suggest one more opinion from a dysautonomia specialist.
Symptoms of dysautomia include these more common ones ( in any combination - some or all ):
• dizziness
• frequent urination
• feeling lightheaded
• body temperature regulation problems ( chills, cold hands, feeling feverish for no reason)
• fainting
• fast, slow, or irregular heartbeat
• chest pain
• gastrointestinal system problems – diarrhea or constipation or alternating
• nausea
• visual field disturbances
• weakness
• fatigue
• breathing difficulties
• tremors
• disrupted sleep
• hypersensitive to noise and light
• anxiety and/or depression; other mental health symptoms

REPLY
1 reply
oakbourne | @oakbourne | Mar 28, 2019
In reply to @jenniferhunter "@johnwes5819 Has anyone checked your liver and gall bladder function? The liver produces bile which emulsifies..." + (show)
@jenniferhunter

@johnwes5819 Has anyone checked your liver and gall bladder function? The liver produces bile which emulsifies fats during digestion, and it is what gives color to your stool. The bile is stored in the gall bladder and squirts it into the small intestine through the bile duct. If anything is blocking the duct such as gallstones, it will prevent some of the bile from getting through. Gall stones can become huge like the tip of your finger. I don't have them, but a friend of mine has had them and she was very ill before surgery removed them. If the timing of how fast things move through the intestines is sped up, the stool can be lighter. The stool is actually white in color if there is no bile. that of course is a question to ask a doctor because one cause of a blocked bile duct could be pancreatic cancer that is in the area and a mass could compress the duct. I also sent you a message.

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Hi johnwes5819. Have you had a colonoscopy performed? If yes, did they do a biopsy of your colon? I had extreme explosive diarrhea, yellow/white diarrhea, diarrhea with undigested food in the matter, sticky bowel movements, hair loss, brain fog, fatigue and heart problems. Luckily, the gastroenterologist perfomed a biopsy. I was diagnosed with Microscopic Colitis. First thing they want to do is put you on horrible medication that does not work!!! The GI specialists treat MC like a gnat bite. NO medication works for MC - only DIET. If you suspect MC, don't get bamboozled into the drug run around. Only DIET works. I don't care for gastroenterologists. Most are useless. MC is a disease that goes undiagnosed. I was thinking of helping a GI/Researcher gain awareness of MC. He wants me to help him because he has MC, but I can't help because much of the time I am wearing diapers and have embarrassing accidents.My Gut has to heal and that's through diet, not drugs.

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1 reply
johnwes5819 | @johnwes5819 | Mar 29, 2019
In reply to @jo81 "In regards to your cold hands and feet, have you been checked for Reynauld’s syndrome? I..." + (show)
@jo81

In regards to your cold hands and feet, have you been checked for Reynauld’s syndrome? I have it and it causeas my hands and feet to be very sensitive to cold.
It’s just something to think about...

Jump to this post

@jo81 No I haven't. Sorry to hear that. How does one get checked for it? Is there a test or lab that can be done?

REPLY
johnwes5819 | @johnwes5819 | Mar 29, 2019
In reply to @slynnb "@johnwes5819 Again, the one thing that all those symptoms could be explained by - that I..." + (show)
@slynnb

@johnwes5819 Again, the one thing that all those symptoms could be explained by - that I know of , at least - is dysautonomia,..and there are many , many types and causes of dysautonomia. It's often missed by physicians because it's not something that shows up on"regular" tests and blood work. Diagnosis relies on carefully listening to symptoms, tilt table tests, etc... If this has been ruled out, I might suggest one more opinion from a dysautonomia specialist.
Symptoms of dysautomia include these more common ones ( in any combination - some or all ):
• dizziness
• frequent urination
• feeling lightheaded
• body temperature regulation problems ( chills, cold hands, feeling feverish for no reason)
• fainting
• fast, slow, or irregular heartbeat
• chest pain
• gastrointestinal system problems – diarrhea or constipation or alternating
• nausea
• visual field disturbances
• weakness
• fatigue
• breathing difficulties
• tremors
• disrupted sleep
• hypersensitive to noise and light
• anxiety and/or depression; other mental health symptoms

Jump to this post

@slynnb It makes sense considering It seems my autonomic system is on the fritz. That would explain a lot. Of course on the dysautonomia informational site, when I search for a doctor in Indiana, there are none. Not one dysautonomia specialist in the entire state. What a joke. haha

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