rising and falling blood pressure with slow heart rate

[thefox2sly]

For almost 2 years, I had been very ill, abdominal tenderness, sometimes severe enough to have emergency room dr's check me for ovarian cysts or fibroids. I also was in and out of emergency rooms monthly, always centered near the start of my menstrual cycle with very unstable blood pressure that would go from 175/98 clear down to 90/50 in minutes, I had a very slow heart rate averaging only 50 bpm, I had severe headaches, usually on my left side, and wheezing in my chest, I was nauseated for the whole 2 years with diarrhea and constipation alternating. I already have history ibs and a bicuspid aortic valve as well as mitral valve prolapse. Other symptoms included dizziness as well as a weird sound (slmost like static from a tv station)in my head that worsened when i laid down and prevented me from sleeping.I had tingling mostly in my hands, but sometimes in my feet as well. All of my trips to the er led to the same tests, looking for heart attack or stroke.

My dr's were baffled, my family dr would write in notes to er dr that i looked chronical (my skin was very pale, almost ashy) and they would run the same tests over and over again.
My heart dr did not feel it was cardiac, and the neurologists stated it wasn't neurological.
I had countless MRI's, MRA's, corroded artery studies, ekg's, stress tests, all of which appeared normal.I was even checked for thyroid storm on 2 occassions.

My Ana was elevated leading dr's to suspect lupus, but that testing came back negative as well.

I was put on plavix to treat a blockage that never showed up and still battled the symptoms for 8 long months regardless of treatments. I was put on prozac for a short term to no avail as well as ativan  and pain meds to help me sleep. To this day I have no idea what was wrong with me, and my blood pressure and heart rate have returned to normal, but I fear another attack and would appreciate any suspicions or further testing that my dr could do.

I saw a show on porphyria and my husband said that guy has all your symptoms, so i quickly became interested in knowing more.

[laurie1067]

I'm so sorry you've been through all of this & that your doctors aren't following up on things they should be testing.  I was just diagnosed with Celiac disease pretty much by accident after 3 months of tests done by my GP, neuro & gastro.  It started with me feeling like there was a lump in my throat.  The GP put me on Aciphex and then my right thumb and left big toe went numb.  I stopped taking the Aciphex, the numbness didn't go away, and I got nauseus, lost my appetite, and had vomiting once.  After a month and a half, I went on Nexium.  That has helped, but not completely.  I've lost 30 lbs in 4 months without trying to.  I was referred to the neuro for the neuropathy, and after blood work (ANA, sed rate, C-reactive protein, CBC), nerve conduction testing, and an MRI they still couldn't figure out what was causing the neuropathy.  Last week I got a diarrhea bug that was going around and ended up in the ER after having diarrhea 4 times in 2 hours because I fainted and had a seizure.  (way too extreme a reaction for garden variety diarrhea!)  Two days later I had an endoscopy because the gastro wanted to see if I had a hernia to explain the weight loss and lump feeling.  He said everything looked good but did random biopsies while he had the scope in.  Lo and behold my biopsy shows Celiac.  There are blood tests your doctor can do that will show if you have the antibodies without having to have an endoscopy.  Celiac frequently gets misdiagnosed as IBS, and lots of people have it and don't know it.  My symptoms were not typical at all, and even my gastro hadn't tested for it and found it through luck.  Have your doctor do an IGA and TTG IgA.  I know how frustrating it is to know something is wrong but not to get an answer after lots of tests.  Hang in there & remember that you are your best advocate!

[thefox2sly]

I did think of doing the urine test, only I am not sure if it will work if you are not having symptoms...but i surely will the next time i feel ill. i would love to know what was wrong with me, and my family dr just considers it a blockage and TIA's, yet they have no evidence that either ever existed especially with all the testing i had done, someting should have shown.

[Annie62]

The above suggestion about celiac disease is a good one.  You might have (had) some kind of autonomic dysfunction, and that can be caused by many things (celiac disease is only one cause).  If you had BP and heart rate issues (or if you get them again), there are tests they can do for autonomic dysfunction-tilt table test, specifically, as well as testing to see if you sweat normally (QSART/sudomotor testing), and if you have stomach issues (nausea, pain and bloating after meals) they can test for gastroparesis, although you mentioned abdominal tenderness and not bloating and nausea after meals (which is seen with GP).  I wouldn't listen to the doctor who told you it wasn't neurologic in nature, especially since you also have tingling in your feet.  If you have an autonomic neuropathy you can also have sensory neuropathy with it.  I was told there was nothing neurologically wrong with me for years and years (actually that there was nothing with me period), and I was finally dxd with autonomic dysfunction.  It's not picked up on the usual tests and sometimes the symptoms of dysautonomica are perceived to be psychosomatic by doctors.  

[thefox2sly]

my aunt had mentioned celiac disease because she has thalasemia (however it's spelled) which is an anemic disorder and someone mentioned it to her because of all of her health issues. I mentioned these possibilities to my dr but they never checked me for it. I was checked for anemia  after my ob/gyn ordered some tests, and was told i should take an iron supplement, but i never did.

I am always bloated no matter how thin i am...but that was always blamed on the IBS, I also have reflux and that was blamed for the nausea, though I myself know that it was not the cause, nothing helped and most days I was so sick, so weak, so dizzy that I could barely walk, much less work.

All I know is when I had bronchitis and was treated with a steroid I ended up with a whole host of symptoms unrelated and was told by my heart dr that i had an autoimmune disorder and should be checked for them. Some years later when I was so very sick, I was told the same thing, that I had some autoimmune disease and should be checked, the only one they ever checked me for was lupus.

[Annie62]

Sorry, I forgot a couple things-I'm half asleep. You actually said the tingling was mostly in your hands, not feet as I thought.

I also have a slow pulse (in the 50s now)--it used to be very rapid for years and years-over 100 resting.  I was told my slow pulse could be due to the dysautonomia.  And I also had an extreme exacerbation of my symptoms before my period, though mine was at the time of ovulation every single month.  I still don't know why that was and no doctor has given me any ideas on it.  Sometimes I felt so ill, weak and faint I thought I was going to die (though I have no BP issues and did OK on the tilt table test).  Some autoimmune diseases are exacerbated at different times of the cycle (my dysautonomia is thought to be autoimmune) and some women report getting worse during their period and some worse during ovulation, depending on which autoimmune disease one has, as hormonal changes influence symptoms.

Anyway, the good part is that your symptoms resolved-perhaps it was a postviral thing that got better on its own.  Hopefully for you it doesn't come back, but I can understand your concern that it will.

[rainsummer]

I saw that same show you did and when I was reading about you I thought of that show....have you tried the urine test?...put some of your urine in the sun light for awhile and see if it turns purple...

[laurie1067]

Have your doctor do a blood test to see if you have Celiac disease.  It can cause neurological symptoms as well as digestive symptoms.  It can have a pretty wide and diverse range of symptoms, and it often gets mistaken for other illnesses.  I just got diagnosed, and my neuro didn't know to check for it.