Odd symtoms, no diagnosis - hypertension, heart rate, dizzy, shivering, more

[jc17263]

I'm a 40yr old male, 180lbs, non-smoker, non-drink, no drug use, no other health issues.

About once a month (for the past year) I get these attacks/episodes with hypertension 150/100+, shivering, and sternum/stomach pain. Sometimes I will also get tachycardia, cold hand/feet, severe dizziness, blurred vision, and exhaustion.

The days following the attacks I will have lots of loud and constant gas movements after eating, hard to pass gas, hard to pass stool, constant stomach pain after eating.

I've seen many specialists and done many, many tests no one seems to be able to figure out what's going on. Just checking to see if anyone else has this or aware of it.

Thanks,
Jon

[jc17263]

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.

[Emily_MHManager]

I'm so sorry. Sometimes getting a diagnosis is really difficult. I hope you find some answers soon.

[Emily_MHManager]

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?

[jc17263]

Hi Emily!

One of the ED doctors I saw suggested abdominal migraines as well. I was given a large dose of Ibuprofen while I was there and it lit my stomach on fire that lasted days but my daily symptoms didn't go away. I have had a few ocular migraines in my life but haven't had one for quite a while.

Having a colonoscopy today so will post an update after I get some results.

Thanks!

[Emily_MHManager]

Good luck!

[Ken_PA]

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.

[SassyLassie]

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.

[jc17263]

I have not yet heard that term/title. I will start checking to see if one is close by.

Thanks for your help!
Jon

[SassyLassie]

You are very welcome. If you go to that site, you will notice at the bottom of the page where you can click to find a clinic near you.

[Ken_PA]

Here you go, jc. This one has some discussion about adrenaline, chills etc:
https://www.medhelp.org/posts/Undiagnosed-Symptoms

/unexplained-paroxysmal-episodes-/show/3048607

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

Neither thread is a perfect match, but you might sort of mix and match in an attempt to get at and understand the mechanisms.

[Ken_PA]

https://www.medhelp.org/posts/Undiagnosed-Symptoms
/unexplained-paroxysmal-episodes-/show/3048607

[Ken_PA]

Last try, it keep splitting the url for some reason:
https://www.medhelp.org/posts/Undiagnosed-Symptoms/unexplained-paroxysmal-episodes-/show/3048607

[jc17263]

Thank you again,

I've read pages upon pages of posts on this great site and will dive into these shortly.

Jon

[Ken_PA]

cj, some thoughts that might spark something:

"pin test"
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...

[Ken_PA]

Sorry, I mean "jc".

Also, are you familiar with the vagus nerve and how even pressure inside the stomach can trigger a neural response?

[jc17263]

"are you familiar with 'leaky gut'"
I've read about it but would that show up in any testing? It does seem to happen with any food.

"Are you familar with SIBO and FODMAPs? "
I've read about these as well but haven't had a breath test yet which I think is the one that determines these.

"But an episode had already begun, correct? The clear liquid diet did not trigger an episode? "
Correct. I had a massive attack while at a doctors appt. and he admitted me to the hospital. I remember "feeling better" once I was there and had no solid food, but my journal says I stay had palpitations and diarrhea a couple of those days. After going home, my stool become flat and broken up. Like a #6 on the Bristol chart but very flat. I haven't had a normal stool now for over 2 months, maybe longer.

"Btw, have you heard of 'elemental nutrition' "
I have not but have begun reading about it.

"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)?"
It's possible. This last attack is the first time I've gotten dizziness. Other times I feel faint. The only constant seems to be high blood pressure and pain in my abdomen. The last attack is also the first time without any tachycardia.

"POTS is from the vessels, I believe, not the heart."
OK, my other doctors keep referring me to Cardiologists for it. My last cardio sent me a referral to another one that specializes in POTS. So I'll see how that goes.

"Did you have a really bad cold before that?"
I did not but I was found, during all this testing, to have Rocky Mountain Spotted Fever. It was treated with doxycycline and retested and found negative afterwards. I remember finding the tick but that was in April and my symptoms started in Jan.

"Also, are you familiar with the vagus nerve and how even pressure inside the stomach can trigger a neural response?"
Yes! I've read a lot about it and it does sound like what was happening but no doctor that I've found knows how to test, diagnose, or work with it at all.


Thanks for all your help!
Jon

[Ken_PA]

"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?

[jc17263]

I've been tested for pheochromocytoma and a few other rare ones by an Endocrinologist (CT scans and 24 hour urine collection). I was given a nitro table for the first time last week during my last ambulance ride to the ED, it did lower my BP but most of my symptoms were dwindling at that point.

The last cardiologist I saw (last week at Duke) said my holter monitor and stress test were fine and I only had to worry if my BP was sustained for longer than 5 mins, I told him mine stays that way for upwards of an hour. He just referred me to someone else, as all other drs have so far.

I've seen an Endocrinologist, Neurologist, multiple cardiologists, 2 Gastroenterologists (3rd coming up next week), 2 surgeons (for nissan fundo and gallbladder removal), about 10 ED visits.

The Mayo clinic turned me down so I'm kinda running out of options. Hopefully I can get a colonoscopy soon, this is one of the only tests I haven't had.

Thanks for your help.

[specialmom]

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.

[jc17263]

Since having these attacks for months I check my blood O2, pulse, and BP multiple times daily to get as much data as I can. It's normally around 110/70.

When I feel an attack coming on (extreme dizziness, tachycardia, heart pounding, shaking, sternum pain) I go lay down and start recording vitals every 5 mins.
I've hit as high as 171/110 and 150 pulse. They come out of no where, are sudden, and last between 20-60mins.

Since this has been ongoing for almost 10 months now I've invested in a pretty good BP monitor. I check it frequently and also had it compared against the EMS when they had to take me to the hospital a few times.

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)

In between these attacks, I have pain in my stomach and sternum all day, every day. I'm mostly bed-ridden and on disability it's so bad.

I've had multiple CT-scans, ultrasounds, upper endoscopies, digestive tests, an MRI, and about a million blood tests and have seen multiple specialists with no answers from anyone.

I was perfectly healthy 10 months ago before my 1st attack come out of no where, now my life has been completely hindered.

Thanks for your help.

[specialmom]

This is maybe way off base, but what about panic attacks?

[jc17263]

It's possible but would it last for months at a time?

[Alexis1197]

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.

[specialmom]

That's great advice!  Especially about including spices as those can impact things too and people don't always realize this. thanks

[jc17263]

Hi Alexis! I have been tested for food allergies and had a pin test done as well. I've kept a pretty detailed journal of my diet and can't find a pattern. I even had issues when admitted to the hospital and on a clear liquid diet. The only time my stomach doesn't bother me is when it's completely empty along with bowels.