Hiya, Beccar. It surely seems that your immune system 'thinks' that you've got something really bad inside and it's doing everything it can to get rid of the invader.
The question leaps to mind: do you think you have picked up a bad parasite or bacteria back when this started? Were you traveling, having exotic food, had under cooked food? Swam outdoors (in wild water)?
Why your blood withdraws to your core is an interesting feature to ponder... So is being hungry right after. (That's a very well written post, btw.)
As far as the paroxysmal nature? What comes to mind is possibly "quorum sensing" by microbes. Look it up if not familiar - it's roughly when they 'decide' that they have enough of a mob together to attack.
Next up, Beccar: did you maybe have tons of stress before getting attacks? In other words, possible weakened immunity, from worry to too much exercise.
Or severe allergies?
We're trying to guess if you should see an Infectious Disease doc or an immunologist or rheumatologist.
The 1st minute of this vid isn't too bad. Afterwards, it goes over the line into too much jargon.
Quorum Sensing [Animation]
"I have regular CBC's all of which have been normal except for my vitamin d levels."
The immune cells that we'd expect to most be involved in fighting parasites are the Eosinophils. Were they high normal?
But there's a catch: they don't have to be high in the blood in order to wreak havoc in mucus membranes, such as the GI tract. They take up residence in the lining. A scan won't show that. Typically, a scope won't, either. Usually what's needed is a scope with a set of small alligator jaws on the end to snip biopsy samples. That's most often done in the esophagus. Do you have problems in the esophagus? Does food ever get stuck on the way down? That would be a gigantic clue.
"... except for my vitamin d levels."
There's been a lot of hype about vit D these past years. But one thing that is true is that people with immune system problems often have low vit D.
Vit D acts as an anti-inflammatory. I would take supplements - there is little risk and it's not very expensive. Didn't any doc say to do that?
"The attacks come and go. Some months i'm fine and other months I'll have episodes. Dec-March I had episodes and then was episode free until last night."
There are such things as 'periodic syndromes' which are usually, but not always, genetic. However, none of those seem to fit - I'm just making you aware that such things exist.
It's very good that you are so detailed. You would have noticed if there was some common environmental trigger, right? Food, heat, dust, mold ...
Well then, it's not known if there is an active parasite (or other pathogen), or if it's an immune thing, or if it's both. Or something genetic, but porphyria doesn't really fit.
It seems like a stool test would be in order. And maybe an antispasmodic drug, for now - maybe there is one that has a very fast onset of action (inhaled?), so that you can take it when feeling an episode coming on.
The short duration of the episodes and the way that you suddenly get better, and even get hungry, has got to be a clue that's useful in differentiating this from the usual.
Have you had your blood sugar levels checked? It sounds like you might be severely hypoglycemic , especially the rapid onset, shaking, feeling hot, confusion, inability to have a conversation, shaky.. then the hunger post episode.
What is your typical diet like? Do you eat small, multiple meals per day, consume sugar/starches, or avoid them? Are you excercising/exerting yourself just before these episodes occur?
The frequency and varying time frames between episodes leads me to suspect your blood sugars may be responsible, given your other blood work results.
It turns out that there is a motherlode of info on this right here at MedHelp. A very detailed thread has 100 responses from people having mostly similar episodes, but not identical. Some of the guesses from sufferers range from parasites, to not-eating, to food ingestion, to some poisoning, etc. Many tests are taken by many people -- most or all are normal. Lots of "that's just like me!" Unfortunately, there is no surprise ending wherein all is solved. From what I've seen in the medical world, that usually means that immune cells are involved - or else there is some rare genetic thing.
Beccar seems to have had another attack just the other night. Maybe when she's up to it, she can study that megathread. It would take a while. I hope you're doing okay, beccar.
I periodically have similar episodes, sudden dizziness, sweating but hot then cold, clammy, shakiness, confusion, atypical hunger- stomach upset, etc. Mine is brought on my sudden hypoglycemic episodes. Afterward, when I get my blood sugar back up, I feel fine.
Are there any specific results from the CBC you'd like to know? I had one done in 19, 18, 17, 16, 15 and they all vary in different aspects from low or high RBC/WBC/Absolute neutrophils/MCV/MCH/BUN Creatine levels/Glucose serum/sodium
Are any of the blood test results starred high or low? How about your blood sugar levels? HbA1C?
Glucose (serum): High
Bun/Creatine ratio: High
Absolute Neutrophils: High
RBC: High and the Low
These are the flagged results from the last 3 CBC’s. I’ve never had an HbA1C.
I would still consider seeing an endocrinologist. You don’t mention actual numbers, but unless you have eaten very shortly before the blood draw, your fasting ( 8 hrs or more since your last meal), your blood sugar levels should fall within the normal range. You may be one of those people whose body produces too much insulin or even not enough. There may be GI associated issues as well or that co exist. But both those specialists are where I would start.
beccar, I will take the contrary position and say that the megathread is filled to the brim with people who went to specialist after specialist, test after test, and most of them got nowhere from that - and some are resentful.
You've already apparently been to lots of doctors over the years anyway. I think you are instead correct in your original statement of "trying to figure out what's wrong with me".
One thing: everyone has heard of 'white coat hypertension'. Do you know that there is also 'white coat hyperglycemia'? Have you compared the high-ish results from your blood draws with what you get from finger sticks at home?
"White Coat Hyperglycemia: The Forgotten Syndrome"
Also, caffeine might raise blood glucose in some people.
Let's try an overview, some of these things you might not know.
It's a lot of interest that your doc thought there was enough justification to test you for a very *rare* pheo. That was the 24-hr urine test you had, then? Therefore, speculating on a working theory can continue the thinking that many (but not all) of your symptoms are from a flood of adrenalines -- just not from a pheo.
A common, easy-reading way of talking about this is "When you see the bear..."
-your body knows you might be bleeding soon, so noradrenalin constricts blood vessels in the skin. You say that you do turn pale and feel cold.
-you might be fighting or running soon, so adrenalin dilates blood vessels in the muscles. You say you feel hot inside.
-you need extra fuel for fighting or running, so adrenaline (with another hormone) makes your liver secrete more glucose
-getting wounded means infection, so adrenalin (and the stress hormone cortisol) causes all the neutrophils that are stored away (compartmented) to go out into blood circulation and even to live longer, to be at the ready
-vessels in the intestines constrict, since you don't need to be digesting - and the muscles have more need for the blood than skin and GI
There is no bear, so what else might provoke secretion of adrenalines?
-a compensation reaction to low blood sugar
-compensation for low blood pressure. What can contribute to low BP?
....chronic baseline low BP; e.g., being small and thin, low sodium
....acute dehydration (hypovolemia) -- some sufferers in the megathread mention that
What can cause gut inflammation/vasodilation?
-real pathogens, such as a parasite
-some non-infection immune reaction: e.g., a sufferer in the megathread did have the Eosinophilic Esophagitis that I mentioned previously, and is okay after food elimination.
You might be a hyper reactor to adrenalines.
I would get a workup for parasites if I were you. AFTER this, can try some parasite cleanses from the internet- but you definitely want the name of a microbe before you treat it half ass.. And get yourself involved by researching different parasites and bowel infections so you can specifically ask for tests that match your sx, you may have to see a private functional doctor bc mainstream doctors are lax on investigations. I have had tests I needed skirted by people I trusted would help. I also found a new company, UBiome, who was giving sophisticated tests for free as a start up. This is how I learned I had C Diff- they contacted me! But I Still had a hard time getting my doctor to order a test that They could accept. Even with his positive test he was reluctant to treat me for, ditto for insurance. So keep doing research, research as if its up to You to figure it out, because it is. good luck