unexplained paroxysmal episodes

[beccar6]

I'm going crazy trying to figure out what's wrong with me. I've had these episodes for as far back as I can remember, but for this post's sake, I'll reference back to the last one about 3 weeks ago. I started to feel my blood rush thru my body and my insides started to feel extremely hot. I'm talking about ripping clothes off and laying on the cool tile floor hot. The weird thing though is that my skin is very pale to the point my lips have no color, it's freezing cold to the touch, and I'm sweating profusely. I felt nauseous and had some stomach pain/cramping. It's followed by severe vomiting (dry heaving/bile if I haven't eaten recently) and bowel movement (diarrhea) I get extremely exhausted during these episodes and very lethargic. Making conversation during an attack is extremely hard. I'm dizzy/lightheaded and extremely weak. Last episode I pooped my pants which is extremely embarrassing, and afterwards, my friend said she'd never been so terrified or witnessed something so close to death. She wanted to take me to the ER but after an hour and a half everything was fine. I got up and ate a blueberry muffin. I feel like my soul is slowly leaving my body during these attacks and then it comes back once it's over. I'm literally on the floor naked begging anybody to make it go away, to not let me die. The episodes only last for an hour, 2 hours tops and then I return back to normal. I had a CT in 18 that came back normal aside for the fact my bowels had too little barium to produce a clear image. 24hr urine came back normal and my CBC was normal. Has anyone heard of this? Any suggestions?

[GBS_patient]

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  

[GBS_patient]

Also, Try an elimination diet.  It's a lot of work but can be invaluable.  if you have food sensitivities, you want to know what they are, and it's not obvious when there are cumulative effects and delayed triggers.  I';ve done the diet several times, each time unlocking a nugget of info.  Also turns out I have lyme, which can make for abdominal problems, but mostly pain, fatigue and nuero.  All the same, people can have more than one thing and the key is to remove what we can so we can deal with the rest.  I learned I am sensitive to BHT in the packaging of chex cereals and since avoid it in packaging and food because I get brain fog and I'd rather have better quality of life than be a pile of mush.  now I;m learning that histamines from the gut have affected me greatly, like an allergy that progresses to anaphylactic shock- so avoiding low grade food stressors on my body has been quite helpful.  I like nourishingmeals.com for ideas of what to cook when you restrict to the safest and therefore healthiest foods possible.  

[Ken_PA]

Let's try an overview, some of these things you might not know.

Part I

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


=======================

Part II

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?
....gut inflammation/vasodilation
....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.

[beccar6]

Yeah, I never followed thru with the rest of the pheo testing because she kinda dismissed it. I’ll ask for a a1c1 when i follow up with my pcp and mention another episode that happened. My mom has also scheduled an appointment with a GI specialist to rule out any IBD issues. I guess we’ll just go from there and see.

[Ken_PA]

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?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4931800/
"White Coat Hyperglycemia: The Forgotten Syndrome"

---

Also, caffeine might raise blood glucose in some people.

[backhurtz]

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.

[beccar6]

Sodium: Low
Glucose (serum): High
Bun/Creatine ratio: High
WBC: High
Absolute Neutrophils: High
RBC: High and the Low
MCV/MCH: Low

These are the flagged results from the last 3 CBC’s. I’ve never had an HbA1C.

[beccar6]

And Vitamin D was chilling at a 19

[backhurtz]

Were you fasting before the bloodwork? The glucose-was it high in all 3?

[backhurtz]

If your blood glucose is high, consistently, then you likely need to see an endocrinologist. Do you have a family history of diabetes , type 1 or 2 in your family?
The clinic at school should be able to help you with a referral.

[beccar6]

The glucose has been high once, and then other times on the high end of normal. I don't remember if I ate or not. I probably didn't have much other than coffee. It wasn't specifically a fasting blood draw.

[backhurtz]

Are any of the blood test results starred high or low? How about your blood sugar levels? HbA1C?
https://www.webmd.com/diabetes/t1-sugar-19/type-1-blood-sugar-warning-signs

[beccar6]

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

[backhurtz]

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.

[beccar6]

Same here but my hot then cold doesn't happen like a hot flash or cold sweat. I physically feel hot internally while my skin is cold to the touch and sweaty. I'm starting to wonder if it's possibly IBS or IBD considering the bowel aspect but that doesn't make sense for the rest of the symptoms.

[Ken_PA]

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.

https://www.medhelp.org/posts/Gastroenterology/Acute-Sporadic-Episodes-of-Severe-Abdominal-Pain/show/1729434

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.

[backhurtz]

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.

[Ken_PA]

Now there's a thought, backhurtz. It's good of you to join in. But still, we'd then need to have more than one causative factor at work, as we'd also have to explain the vomiting/diarrhea and GI pain.

I was thinking that a flood of adrenaline was maybe being released if she was having very low BP (shock) from histamine etc.; but yep... low blood glucose can also provoke that. So, it's either/or. Or even both.

"excercising/exerting"  
Yep, or else as you know, reactive hypoglycemia.

Let's see, besides having a glucose meter: her friend using a thermometer and BP cuff would be nice - and at least take pulse (adrenaline, or reactive tachycardia). All to gather clues. I suppose a portable EEG (seizures) is out of the question :)

[beccar6]

No, I've never had my blood sugar checked. My diet is not the greatest considering I'm a college student. I thought it could be that at first but the frequency didn't add up to that because I go extended periods of time without food. I did buy a monitor at Walmart a while back and my sugar is usually on the normal end of low. I do try to push carbs because they're the main source of energy for your brain, but I also eat from other food groups and avoid dairy since I'm lactose intolerant. I grew as an athlete, but the older I have gotten the more frequent the episodes have become. My doctor didn't seem too worried about hypoglycemia when I told her about my episodes. Her reaction was to test for pheochromocytoma (a tumor on your adrenal gland.) My blood pressure also stays pretty low, but I think it bottoms out during these episodes which is why i'm lethargic. I forgot to take my blood sugar level during the last one, but I'll try to remember. I can look in the labcorp portal and find results from different years. My vitamin d level is also low. Low enough they wanted me to take 5000 ICU daily. (I'm only 22) but I know females tend to run low.

[Ken_PA]

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.

[Ken_PA]

"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 ...

[beccar6]

No, none that I've noticed. I even tried eating trigger foods, but nothing happened. I avoid dairy because I'm intolerant and spicy foods because they make my stomach upset. As far as I have noticed, there's not a particular trigger. I'm starting to wonder if it's possibly IBS

[Ken_PA]

"... 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?

[Ken_PA]

"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.

[beccar6]

My vitamin d levels were low, very low. They called me to tell me I needed to start taking 5000 ICU daily instead of the recommended 400-800 ICU. I've never had a colonoscopy, but I had a CT w/ contrast that showed normal. My bowels didn't get enough barium to light up all the way through. As far as the food, I haven't noticed which probably means no. I feel like I would know if I choked every time I ate.

[Ken_PA]

The 1st minute of this vid isn't too bad. Afterwards, it goes over the line into too much jargon.
https://www.youtube.com/watch?v=gU75FIIfAHY

Quorum Sensing [Animation]

[Ken_PA]

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.

[beccar6]

No, I wasn't super stressed or anxiety ridden. 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. I have no known allergies. I have regular CBC's all of which have been normal except for my vitamin d levels. I've had a ct with contrast that was normal, but the barium didn't fully set in my bowels so that was inconclusive. EKG and Halter were normal. Electrolyte levels were normal. 24 hour urine was normal. Bone density scan was normal. These attacks have been happening for years, but everything they've done has given normal results.

[Ken_PA]

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.

[beccar6]

Now that you mention it, I grew up camping a lot. We swam in lakes, ponds, creeks, and rivers. I've also lived in the country/rural areas most of my life. I've never traveled outside of the USA, and as far as exotic food goes, never really had anything other than your Americanized chain places. I've never heard of quorum sensing microbes. Could you tell me more about them?