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.

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@oakbourne

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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@oakbourne I had 2 colonoscopies and one upper endoscopy. During the colonoscopy, they found a polyp which was removed and biopsied. It was benign. I have not had any biopsy of the actual colon itself though.

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@johnwes5819

@oakbourne I had 2 colonoscopies and one upper endoscopy. During the colonoscopy, they found a polyp which was removed and biopsied. It was benign. I have not had any biopsy of the actual colon itself though.

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There has to be a biopsy of the inner colon, underneath the lining. That's where the problem is and should be addressed. That will address MC as a problem. Dorothy

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My sense is that you may need to see a neurologist. Describe all these symptoms, just as you wrote them, as you write well. The thing is, I am not quite articulate enough to tell you why a neuro doc is coming to mind. I will get back to you if I can articulate better. Of course, also a gastroenterologist for the bowel problems. Best of luck, Lori Renee

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@lorirenee1

My sense is that you may need to see a neurologist. Describe all these symptoms, just as you wrote them, as you write well. The thing is, I am not quite articulate enough to tell you why a neuro doc is coming to mind. I will get back to you if I can articulate better. Of course, also a gastroenterologist for the bowel problems. Best of luck, Lori Renee

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@lorirenee1 I've seen 2 neurologists. Unfortunately, they couldn't find anything. That's just how it is. I've also been to 4 gastro's. It's impossible to get answers.

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it may be a combination of Postural orthostatic tachycardia and food allergies and gall bladder issues you need to be seen at the mayo to get a definitive diagnosis or UCLA medical center

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Hello John, You are really suffering terribly. I feel very bad for you because it sounds like you are going through absolute hell!
Check the meds you are on. They are OFTEN the cause of all kinds of nasty side effects. For example, a side effect of meds for rheumatoid arthritis is paranoia and psychosis!
Often when a patient in hospital presents with a host of seemingly unrelated symptoms, they call in an internist to figure things out. Can you go to see one? Don't worry about the cost if that is an issue because your health is precious and it sounds like your quality of life is seriously compromised. Can you insist on being admitted to hospital to undergo a battery of tests to figure out what is causing all these symptoms? No one should have to live with such a condition and have no idea what the diagnosis is. Let us know what happens...hopefully very soon!

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@sirgalahad

it may be a combination of Postural orthostatic tachycardia and food allergies and gall bladder issues you need to be seen at the mayo to get a definitive diagnosis or UCLA medical center

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Good idea!

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@afrobin

Hello John, You are really suffering terribly. I feel very bad for you because it sounds like you are going through absolute hell!
Check the meds you are on. They are OFTEN the cause of all kinds of nasty side effects. For example, a side effect of meds for rheumatoid arthritis is paranoia and psychosis!
Often when a patient in hospital presents with a host of seemingly unrelated symptoms, they call in an internist to figure things out. Can you go to see one? Don't worry about the cost if that is an issue because your health is precious and it sounds like your quality of life is seriously compromised. Can you insist on being admitted to hospital to undergo a battery of tests to figure out what is causing all these symptoms? No one should have to live with such a condition and have no idea what the diagnosis is. Let us know what happens...hopefully very soon!

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@johnwes5819 I absolutely agree that medications are a very frequently overlooked cause of sometimes debilitating and worrisome symptoms - and by "overlooked," I mean by physicians as well as people taking the drugs! A case in point is what I predict will be revealed as an extremely serious problem over the next decade or two : common protein pump inhibitors taken by countless millions and now sold over the counter. From heart arrhythmias and fatigue from low magnesium to unexplained dizziness (often blamed on "anxiety" ), to an increased risk in serious kidney disease, heart attacks and pancreatic cancer and more are now known potential sequalae ..an increased risk in dementia is not proven but suggested by some studies. yet people keep popping them. And doctors too often keep declaring them as "safe and effective" - because, let's face it, they calm symptoms easily and it's quicker and easier than to deal with other potential causes and solutions to GERD and heartburn (and, no, PPIs now are fairly well proven to NOT prevent esophageal cancer as was previously claimed and some research suggests the opposite..)The US is a nation of drug takers and while I totally support medication that is needed and I promote and love and respect science, and research, it is disheartening to consider how many people take multiple drugs they do not necessarily need with little thought or attention paid to what they may be doing to that person and how multiple drugs interact - and if they could be causing strange symptoms. Having said all that, I still think it is highly unlikely, John, that you are suffering from multiple ills. I still think the best explanation so far that covers most all of your symptoms is a form of dysautonomia.

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@slynnb

@johnwes5819 I absolutely agree that medications are a very frequently overlooked cause of sometimes debilitating and worrisome symptoms - and by "overlooked," I mean by physicians as well as people taking the drugs! A case in point is what I predict will be revealed as an extremely serious problem over the next decade or two : common protein pump inhibitors taken by countless millions and now sold over the counter. From heart arrhythmias and fatigue from low magnesium to unexplained dizziness (often blamed on "anxiety" ), to an increased risk in serious kidney disease, heart attacks and pancreatic cancer and more are now known potential sequalae ..an increased risk in dementia is not proven but suggested by some studies. yet people keep popping them. And doctors too often keep declaring them as "safe and effective" - because, let's face it, they calm symptoms easily and it's quicker and easier than to deal with other potential causes and solutions to GERD and heartburn (and, no, PPIs now are fairly well proven to NOT prevent esophageal cancer as was previously claimed and some research suggests the opposite..)The US is a nation of drug takers and while I totally support medication that is needed and I promote and love and respect science, and research, it is disheartening to consider how many people take multiple drugs they do not necessarily need with little thought or attention paid to what they may be doing to that person and how multiple drugs interact - and if they could be causing strange symptoms. Having said all that, I still think it is highly unlikely, John, that you are suffering from multiple ills. I still think the best explanation so far that covers most all of your symptoms is a form of dysautonomia.

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johnwes5819 I would strongly recommend if you are in USA and not far from the Mayo clinic they have 3 locations or near UCLA that you get a referral to be assessed for Dysautonomia or what I suggested .the other thing is to go online and look up Mims pharmaceutical book .which has all medications listed and referred to by doctors and specialist and have a look at the medications and see what the contraindications are involved and or see if the medications aren't reacting with each other and the constipation and insufficient fluids and kidneys issues and liver and gut issues could mean inflammation of the gut lining and intestine . .the important thing is to get someone to write down all the meds you are on and have a look and query if too many meds . but a review at mayo clinic and or Ucla if in America would be strongly advisable

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I am allergic to penicillin and Cephalosporin /Sulphur based antibiotics and there is only 2 pathways for those antibiotics to work on . I have to take Docyclines antibiotics to get the same effects .I did become allergic to warfarin and had to change too Elequis /apxiban blood thinners to able to continue to stop blood clots and stroking out . I was also wondering how much water you drink and also how much fiber you take with your medications a lot are known to cause constipation and or diahorea excuse spelling . We do reach a time where by we have to change medications to another one to get the same effect .we stop reaching the drug active level to fix body system problems . most medications aren't kind to kidneys and liver and to gut linings and need to increase stuff . I would also suggest you go and check with your doctor about the possibilities we have suggested Postural Orthostatic Tachycardia or Dysautonomia and also do a list of medications and to check contraindications and are they antagonistic towards each other . please do go and see Mayo or ucla regards sir galahad

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