Hi All! Still waiting on biopsy results but colonoscopy only showed an internal hemorrhoid, which was most likely causing the flat stool.
Unfortunately, this new GI doctor is like every other doctor I've seen, he shrugged his shoulders, said he had no clue, and pretty much gave up immediately. I'm still having daily symptoms with no course of action.
I've also seen a POTS specialist cardiologist and all they've done is prescribe beta blockers and run some blood tests that all came back fine.
This whole experience has really left me with a bad taste in my mouth with the entire health care system. Lot of caring people but unless it's something really easy or one of three things that doctor knows about they give up and send you elsewhere. Out of the nearly $2 million spent through insurance and the year of my life I've already lost to this I'm still not any closer to even finding a diagnosis or any relief. I always thought doctors were there to help you, they only exist to churn through patients.
My only option now is to deal with it until one day I might get really lucky and find a doctor who has heard of this before.
Thanks to everyone for your help, I'll come back and update this thread some day if I even find out what's going on to hopefully help others.
You've gotten tons of suggestions, but I was thinking silent or ocular migraine or abdominal migraine. I get ocular migraines, and have many of your symptoms. I haven't ever taken my BP during them, so I don't know if it rises, so I can't address that.
How are you doing now?
Jon, I'd generate data for 1st visit with the new POTS-cardio by doing lots of runs of the DYI "poor man's tilt table test". (Start BP cuff, then immediately stand to try and catch initial very-low BP -- that can explain the resulting HTN over-compensation via adrenalines.)
POTS can generally involve blood pooling in the legs. Low circulatory volume can be involved, that's why a mineralocorticoid (Na-retaining) is an Rx.
Hello~You have been given some very good advice, the only other suggestion I would give would be to see a Naturopath. Have you seen one yet? The reason I ask, is sometimes they are more in tune with symptoms that are otherwise unable to be diagnosed by a conventional MD. I had a couple of great ones back home in the states, they gave me tests that no other doctor had heard of, and due to that, were able to come to some conclusions as to why I have having the issues I was experiencing. I highly suggest seeing one, but make sure they have graduated from an accredited Naturopathic college, I don't like to see any unless they have graduated from the "Bastyr College" in Kenmore Washington, that is the "Rolls Royce" of all Naturopathic Colleges. They also have a clinic which I went to, it was awesome. Here is their site, perhaps if your wrote them they could help guide you to a good Naturpathic doctor in your area. https://bastyr.edu/
I hope you get the help you need soon, have undiagnosed symptoms can be so frustrating.
Here you go, jc. This one has some discussion about adrenaline, chills etc:
This other one is very long, don't give up and stop reading until you get to "abdominal migraines". That's not a perfect match (navel instead of sternum, e.g.), but that or something else in that thread might spark something.
Neither thread is a perfect match, but you might sort of mix and match in an attempt to get at and understand the mechanisms.
cj, some thoughts that might spark something:
Skin tests don't necessarily tell what sensitivities you might have in the gut.
"can't find a pattern"
It can be not a particular food, but a component of foods. E.g., a person can have a sensitivity to salicylates in foods, or tyramine can raise BP. Or else, are you familiar with 'leaky gut' (which is increased intestinal permeability, from breakdown of tight junctions), which can allow undigested proteins into the bloodstream - making for an immune reaction to almost any food?
"The days following the attacks I will have lots of loud and constant gas movements"
Sounds like probable fermentation. Are you familar with SIBO and FODMAPs?
"I even had issues when admitted to the hospital and on a clear liquid diet."
But an episode had already begun, correct? The clear liquid diet did not trigger an episode? Btw, have you heard of 'elemental nutrition' (predigested liquid food) which is used by people with conditions like Eosinophilic Esophagitis?
"When I feel an attack coming on (extreme dizziness, tachycardia, heart pounding, shaking..."
Is it possible that you had very low BP or low O2 right then (extreme dizziness), then you had a compensatory flood of adrenaline (tachycardia, heart pounding, shaking... and chills as blood withdraws from skin)?
"I've been told I have POTS but no Cardiologist even mentions it during visits (I've seen 4 different Cardiologist all say heart is fine)"
POTS is from the vessels, I believe, not the heart.
"I was perfectly healthy 10 months ago before my 1st attack come out of no where"
Did you have a really bad cold before that? (possible post viral syndrome). Or anything else like toxin exposure? Parasite from swimming?
I'm going to see if I can find two threads that have some sort of similarity to you...
"I've hit as high as 171/110"
Hi, cj. With mystery conditions, you want to rule out whatever might be catastrophic, even if it is unlikely. So then, has a pheochromocytoma been rued out? (That's roughly an adrenaline tumor.)
That's pretty severe blood pressure. If I remember correctly, 110 diastolic qualifies as 'medical urgency'. Have you been given nitroglycerin for those episodes?
I agree that I'd look at when the attacks happen and back track with information. Record it and look for a pattern. Since you have the GI issues, that seems like it could be related to food intake. How do you know your blood pressure goes up? Do you have a home monitor? wearables aren't always accurate. What is your BP normally? You sound pretty healthy overall.
Have you been tested for allergies? New allergies can show up at any time. You could try keeping a food journal of everything you eat, included all spices used. After you've have symptoms a couple more times look back over the previous few days before each attack and see if any of the foods match.