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.

I am going to ask one question. Have you had a MRI before this for something else and did they use a dye?

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@predictable

Hi @johnwes5819. I am as puzzled as you are about your complex of symptoms. I looked at your other message, and it prompted me to respond right away because what I saw stood out so clearly as a potential problem -- 50,000 International Units of Vitamin D3. That's a very high daily dose of Vitamin D3 and might be the source of several of your troublesome symptoms. I suggest that you have a direct conversation in person with a doctor you trust, first thing in the morning, about the Vitamin D3 dose. Second, you made no mention of what kind of doctors are on your medical team. Given the range of your symptoms and their mysterious relationships, would you consider arranging for thorough examination by an endocrinologist; this could reveal something about your body chemistry that is not now known -- for example, the catecholamines, hormones made by the adrenal glands (epinephrine (adrenalin), norepinephrine, and dopamine). Third, would it be possible for you to undergo a complete examination by Mayo Clinic at Rochester, Minnesota, or Scottsdale, AZ, or Jacksonville, FL? Mayo or a similarly equipped complex of clinics with a history and reputation of patient-directed, full range, diagnosis and treatment would be a good option to consider. We can help you make arrangements with Mayo. Martin

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Excellent advice! I don't see where this is written but if you are taking 50,000 IU of vitamin D3 per day, FIFTY TIMES the suggested dose...that could be the cause of all your symptoms. Why would you take so much? I don't understand. Excess vitamin D causes all kinds of reactions in your body. I read that it can take a year to rid your body of the excess amount of vitamin D. Have your blood levels checked,
Fatty liver is very common among those who are overweight.
I think it is important to drink plenty of water every day to flush your system and go for big walks to stimulate all your internal organs and clear your mind. Put sun screen on if you live in a warm climate so that you avoid even more vitamin D from the sun.
Good luck, John!

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@johnwes5819 Somehow, I missed the info that you are taking mega doses of Vitamin D . This can be toxic! Hypervitaminosis D is NOT caused by sun exposure ( it is erroneous advice to tell you it is) nor by diet . Your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods are not loaded with excess vitamin D. The problem with too much vitamin D is that it causes calcium to accumulate in your blood. Symptoms of hypercalcemia include - weakness, bone pain, kidney problems nausea, vomiting, confusion, abdominal pain.. and other symptoms from MANY different parts of your body.

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@johnwes5819

@predictable Thank you for your sympathy. it started with me jumping through the hoops of a primary care doctor sending me to a psychiatrist. I tried 6 months worth of antidepressant medications that made me feel worse overall. With no background in medical but someone that has a great grasp on learning new information. I took it upon myself to read 100's to 1,000's of the long boring mayo clinic assays that nobody fully reads but I did. I started with biochemistry, then cellular biology, and so on. When I went to see the psychiatrist for a 7th prescription to try, I asked her about vitamins and the precursors to serotonin. She basically said, "none of that matters" that's when I knew the doctors I was seeing were cookie cutter doctors that belong at band-aid hospitals. So I had to research for myself. Because of my random adrenal surges that didn't seem to have a rhyme or reason, I had my cardiologist check my urine for catecholamines to exclude pheochromocytoma and I've been at this journey by myself. I have an ND right now who's work with me but it's been a slow process. I've only been seeing her for a few months. There hasn't been one doctor in charge because they either run out of ideas or my issues are just too complex. I would love to have a captain of the ship but for right now it's just me. Most of my doctors have told me I'm more knowledgeable than their students. I really don't want to know any of this stuff I just want to fix myself since none of the doctors are.

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@johnwes5819 I’m so sorry you’ve been going thru all of this! I strongly encourage going to a university medical center. When I was very sick last year, I begged for an MRI, but the doctors here could barely interpret it. My husband got on the phone and called University of Colorado Health. From my symptoms,etc, they put me into the neurology clinic and I’m being well taken care of. Yes, it means a long drive to Denver, but... I sure wish you luck. Let us know what happens! Becky

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@slynnb

@johnwes5819 Somehow, I missed the info that you are taking mega doses of Vitamin D . This can be toxic! Hypervitaminosis D is NOT caused by sun exposure ( it is erroneous advice to tell you it is) nor by diet . Your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods are not loaded with excess vitamin D. The problem with too much vitamin D is that it causes calcium to accumulate in your blood. Symptoms of hypercalcemia include - weakness, bone pain, kidney problems nausea, vomiting, confusion, abdominal pain.. and other symptoms from MANY different parts of your body.

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@slynnb @johnwes5819 I wanted to pass along something I learned from my environmental medicine doctor about Vitamin D supplements. He does test my blood vitamin D levels to optimize them, and the supplement he has me take is both Vitamin D and Vitamin K2 because the K2 is to regulate and prevent the excess calcium to be deposited in the blood stream. That supplement is from Orthomolecular, and just called K2 D3. Vitamin K is really important, and if you don't get this in your diet, it should be in your Vitamin D supplement.
Here is an explanation of how K2 inhibits the deposition of calcium on the wall of blood vessels.
https://www.nutraceuticalbusinessreview.com/technical/article_page/Vitamin_K2_new_research_confirms_essential_role_in_heart_health/114933

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@jenniferhunter

@slynnb @johnwes5819 I wanted to pass along something I learned from my environmental medicine doctor about Vitamin D supplements. He does test my blood vitamin D levels to optimize them, and the supplement he has me take is both Vitamin D and Vitamin K2 because the K2 is to regulate and prevent the excess calcium to be deposited in the blood stream. That supplement is from Orthomolecular, and just called K2 D3. Vitamin K is really important, and if you don't get this in your diet, it should be in your Vitamin D supplement.
Here is an explanation of how K2 inhibits the deposition of calcium on the wall of blood vessels.
https://www.nutraceuticalbusinessreview.com/technical/article_page/Vitamin_K2_new_research_confirms_essential_role_in_heart_health/114933

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ALL HANDS. Please be careful about taking Vitamin K! Discuss that with your medical doctor before following any nonmedical advice. Vitamin K is an antidote for Warfarin (Coumadin), an anticoagulant that is widely used to reduce chances of blood clots forming within the heart and other parts of the circulatory system. Those clots can really damage the brain, the heart, the kidneys, and other vital organs by blocking the flow of oxygen-rich blood to those organs.

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@predictable

ALL HANDS. Please be careful about taking Vitamin K! Discuss that with your medical doctor before following any nonmedical advice. Vitamin K is an antidote for Warfarin (Coumadin), an anticoagulant that is widely used to reduce chances of blood clots forming within the heart and other parts of the circulatory system. Those clots can really damage the brain, the heart, the kidneys, and other vital organs by blocking the flow of oxygen-rich blood to those organs.

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@predictable Thanks for bringing up blood thinners. Yes, absolutely discuss any supplements with your doctor, and doctors do adjust doses of Coumadin based on a patient's typical food intake. My mother in law had to avoid eating salad and greens because of the Vitamin K they contained. It wasn't that she could not eat any of it, but she had to be consistent, so that her daily dose of Coumadin would be correct. My mom takes a different blood thinner, Eloquis , and this isn't an issue for her.

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@predictable

ALL HANDS. Please be careful about taking Vitamin K! Discuss that with your medical doctor before following any nonmedical advice. Vitamin K is an antidote for Warfarin (Coumadin), an anticoagulant that is widely used to reduce chances of blood clots forming within the heart and other parts of the circulatory system. Those clots can really damage the brain, the heart, the kidneys, and other vital organs by blocking the flow of oxygen-rich blood to those organs.

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@predictable. Seriously? Vitamin K is an ANTIDOTE for Warfarin/blood thinners???? Please confirm.

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@capausz

@predictable. Seriously? Vitamin K is an ANTIDOTE for Warfarin/blood thinners???? Please confirm.

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This is to confirm what I said earlier: Vitamin K is the most common antidote for Warfarin (Coumadin). I say this with personal knowledge, being a user of Warfarin for more than four years and having "enjoyed" a stroke when I got careless with my Coumadin doses last summer. Martin

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It is usually very frustrating when there are symptoms but all labs are normal. On the other hand, normal labs are encouraging, indicating major body systems are functioning well despite whatever process may be going on. We do not know you medical history, family history, social history or travel history. The episodes you described, as you mentioned, do not clearly point to a specific diagnosis. If we were to only go by US findings of liver, and intermittent chills plus a variety of vague symptoms:

Unusual causes of paranchymal liver disease on imaging may include metabolic disorders like Hemochromatosis or Wilson's disease or Autoimmune disease. Earlier stages could be hard to diagnose. Dr Vupalanchi is a good hepatologist at St Vincent Hospital.
When dealing with fluctuating unexplained chronic symptoms it may be appropriate to evaluate your home and work environment for potential exposure to toxins through water, air vents, car, medications, partners or food. Your travel history may have exposed you to diseases doctors in Indiana do not look for, like malaria that can cause intermittent chills. About 12 years ago it affected a number of people in Chicago. Ask your primary provider for related testing or consider consulting an Infectious disease specialist for chronic viruses that my reactivate causing vague symptoms including chills like ebv. Lyme and Erlichiosis disease may be hard to diagnose. Lyme antibody will be negative for many weeks after an infection so early negative labs may be false. Since you live in Indiana, consider seeing Dr Misra at IU, infectious disease.
Dr Imad Shawa is an internist/pulmonologist/critical care doctor affiliated with st Francis Hospital in Indiana. He is very experienced in work up of complicated or unusual cases. However he primarily sees pulmonary patients in private practice.
If no clear diagnosis is made, an option is to optimize healing ability of your own body by trying a "lifestyle medicine program" while you continue your search Avoid alcohol to protect your liver. Best wishes.

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