Kidney Stones or something else? Horrible recurring episodes
47F, caucasian, rare alcohol (none during this period described), never smoked, obese, relatively healthy, have HTN, (take telmisartan) and acid reflux with chronic cough (just switched from Omeprazole to Nexium by ENT)
Thank you for any help you can provide.Sorry for the length, just feeling really scared and wondering what might be happening to me the last few months. Also posted on kidney stone sub, but this seems like a really helpful place.
I am somewhat familiar with how kidney stones usually present, former roommate and husband have both had traditional presentations, but my doctor thinks some episodes I have been having could also be kidney stones with very unusual presentations. I have appointments scheduled with cardiologist, GI, Urology, and ENT, but all are several weeks or even months out, and this keeps happening, so would love your thoughts.
Since late August, I have had 6 episodes every 2-4 weeks, lasting about an hour each, starting with mild stomach cramping that sends me to toilet and escalates into:
--Prickly feeling around lips and sometimes neck
--Intense diarrhea
--Violent vomiting (as in 30-40 vomits/dry heaves over about 30-60 minutes) (this is awful. Loud and retching. over and over and over)
--drenching sweat all over, feel insanely hot. Soaked.
--really weird vibrations/sensations in my hands, wrists, lower arms
--sometimes splotching/itching, mostly in arms but sometimes on neck and then all over
--incredible weakness (this past one was yesterday and I laid down on the bathroom floor twice in between the diarrhea because I didn't have the strength to hold self on toilet anymore)
--drop in blood pressure (vasovagal response) (at least the first time) but don't pass out
--when it's over, I begin shivering and my temperature drops. I make it to bed when I'm sure I'm done pooping and puking and lay there and shiver for 30-45 minutes.
--wiped out rest of day and still tired the next day. Then go back to normal until the next time, which has been about 2 weeks each time.
The first time this happened in lat August I thought I was dying and having a heart attack. I called 911, they came, couldn't find a blood pressure. Was better with fluids in ambulance and by the time I got there. ED doc blamed antibiotics I was on (for spider or tick bite) for making me nauseated and causing a vasovagal response. Sent me home with nausea meds.
Happened 2 more times and I went to regular doctor who did labs and saw blood in urine. He thinks it is kidney stones with a unique presentation--not the usual sharp pain, but my body is reacting the same way.
Has happened 3 more times since then while I wait for specialist appointments. This happens suddenly and has created a lot of anxiety around going to bathroom or being out in public--this happened once at work and my husband had to come get me since I was too weak to drive. This always happens out of no where other than some mild cramping, but then lasts at least an hour while I strip off my clothes from being so hot, so I am terrified about it happening in public again like it did at work.
4 times have been late afternoon/evening, one was middle of the night, yesterday was mid-afternoon. So no pattern. No other patterns I have identified with food or activity.
If you have any ideas what this is and what I can do to stop it, please let me know. I would be so grateful for any direction. I really feel like I am dying each time.
Note: In this time I have had 3 negative Covid tests, not due to symptoms but required before starting semester at work and then chosen for a random test. I have not had any direct Covid exposure that I am aware of and don't think I have had Covid.
Posted Dec 20, 2020, 4:49 AM UTC
So I am not a doctor. Just a nerd who loves medicine (not the kind one takes; but the field in general). I also have acute intermittent porphyria. I have had symptoms from around age 8 or 9, and until just a few months ago, none of the doctors I had seen even suspected it. There are several reasons - some said my symptoms were psychosomatic because I have PTSD. Some said I was malingering. Most thought I was not in very much pain. Some thought I was drug-seeking. Then I was diagnosed with very extensive endometriosis and had multiple surgeries for it. The surgeries were worth it because the endo was very symptomatic, but it didn't fix the random attacks. I was also diagnosed with Crohn's disease, and the treatment for that helped some of the other symptoms I had.
My attacks are easily a 9 or 10 on a 10 point scale. Have had numerous ambulance rides because it felt like I was being torn apart and vomiting violently, so much so that it felt like I didn't even have the ability to breathe. I would pour sweat, literally running down my face and torso. The last time I was taken by ambulance, my GI doc happened to be in the ER for another patient. He saw in person how NOT okay I was (he said I looked way worse than when the Crohn's disease flared AND I had c.diff at the same time). I have one unusual aspect of AIP, in that twhen the severe attacks happen the attacks are only super unbearable for a day or two before they gradually improve. So he had me pee in a cup and diagnosis was made definitively. AIP isn't common, and my presentation was not typical as the attacks are shorter than usual. I get infusions of heme on a schedule, and have only had one attack since starting that. Before that, it was happening at least a few times per month
Anyway, my point is this: common things have common AND rare presentations, and so do rare things.
That’s really interesting, thank you for responding. I will ask the doctor about it. Sorry you have been through so much but glad you have found some relief.