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I'm having multiple odd episodes that are keeping me undiagnosed. Help
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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I agree that many are caring. Bedside manner for me is less important. Caring in the sense that they care to get to the bottom of an issue is important, of course but I think it is rare. And you are fortunate to have found one. Some are jaded...and let's face it...it's not a great job to be stuck inside a small room all day with sick, miserable and complaining people. I read that if they could start their careers over again, most would not choose to be doctors. There's not the fulfilment in it (prestige yes) that they expected.
So, they may go through the motions and fall back on their standard procedures. Most avoid discussing prevention or management through lifestyle changes. Most often, I find, they grab the prescription pad.
I am lucky. My GP explores different options and drugs are a last resort. My aim is to be off any medication unless absolutely necessary. Lifestyle changes can manage illnesses such as type 2 diabetes, fatty liver, obesity, chronic hives, depression...even in my case a serious case of AFib. It's the good doctors who encourage lifestyle changes rather than resorting to drugs.
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4 Reactions@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
Have you had your aldosterone levels checked? Just read a very good book by Janet Rankin "Primary Aldosterone" and your symptoms and struggle!e sound familiar to what i just read. It can be bought on Amazon for kindle for under $10.00. She also has a website.
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1 Reaction@maxaz1 Thank you so much for taking the time to respond. It means a lot to me that you would be so kind as to do so and to reach out to your friend. I sent you a PM on here. If you could reply that would be fantastic. Thank you again 🙂
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1 ReactionSo I was able to find out Episode 1 is Insulin resistance. It's causing hypo/hyperglycemia episodes usually during the middle of the night. Known as the dawn phenomenon. My liver is creating too much insulin. This was confirmed by my Endocrinologist.
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1 ReactionActually, it's the pancreas, not the liver, that produces the hormone insulin via the 'beta cells' in the islets of Langerhans in response to food. Insulin regulates blood sugar (glucose)levels and is necessary for moving glucose into cells of fat, muscle, liver and other body tissues. Insulin resistance means those cells in your muscles, fat, liver are resisting the signal from insulin to take up glucose. The result? Blood sugar (glucose)levels rise. Insulin resistance is often part of metabolic syndrome ( a cluster of conditions including elevated blood pressure, high blood sugar, excess body fat around the waist, and too high cholesterol and/or triglyceride levels). Insulin resistance usually precedes type 2 diabetes. The good news is, while there can be a genetic factor in insulin resistance and type 2 diabetes, by far the most likely causes that bring on type 2 diabetes(even if there is a genetic factor) are lifestyle factors (being overweight and sedentary, primarily) - and those you CAN change and reverse the path toward type 2 diabetes and often reverse type 2 diabetes once in develops.
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2 Reactionsexactly @slynnb from the islet of langerhan CELLS AND WHY WE ALSO DIE SO QUICKLY FROM PANCREATIC CANCER
How much are you sleeping? My son has mentioned similar feelings when "in episode" with Klein Levine Syndrome. He also will sleep 15-20 hours a day. Keto diet has really helped him along with probiotics and prebiotics. It's sometimes a mix of insomnia and hypersomia. Often his circadian rhythms get thrown off and he's up all night and sleeps all day.
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1 Reaction@slynnb Yeah sorry that was a typo. Yeah, I meant pancreas. I was also told I have fatty liver. So my hunch on liver issues was correct. He said too bad my doctors didn't listen to me.
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1 Reaction@momnxtdr Thanks for your post. My sleep is pretty consistent. Some days for 7 hours and then some days for 9 hours.