Join Date: Dec 2012
Hoping To Find Suggestions / Understanding
First, thank you to anyone who reads this. Though extensive experience with internet, have never ever joined a chat room or forum. I'm desperate for help from people who have experienced something like I have and am hoping for advice on how to get treatment & what treatment & diagnosis of ? confirmed by ? tests? my local doctors are not helpful.
i look like a very healthy, fit, slim, 43 year old. i am well educated, divorced from a doctor for 14 years, never remarried, have a 16 year old son. i have good friends, some for more than 20 years. though i did lose some during the past 4 years because of my strange health issues & non-diagnosis, which can be a "drag" to deal with as a friend, especially when it seems like friend may just be "crazy/have anxiety."
I've had 2 major "episodes." the first one, three years ago, landed me in E.R. three times at two different hospitals, complaining of shortness of breath, unable to lay down and breathe, weakness, headache, muscle & skeletal pain, vertigo, "twisting spine" (rib cage turned one way, pelvis the other, neck the other!), red ears, drooling, trouble swallowing, chewing, eye pain, anxiety (because i was exhausted & couldn't sleep or eat!). was accused of being drug addict at first hospital (i'm not. no drugs in system but they didn't have results back yet, sent drug counselor in who shut the door and asked me what i was "really on"!!!!). i'd been taking 1 alprazolam a night for several years to sleep & when began having such pain and fatigue, did not want to mix medicines, so went to GP (also was having torticollis!) and gave me fluxeril & cspine xray, and said if xray comes back normal to go to psychiatrist. well, i took the fluxeril and that whole night had convulsions, couldn't breathe when laying down, spine twisting, etc. and so in morning had to go to E.R. My ecg said pulse 119 (it was usually in 70's) "Sinus Tach, possible infarct, left enlarged vent, abnormal ecg" and they took a shot of my chest with a portable xray and declared me anxiety & hyperventilation. They sent me away with psychiatrist recommend.
2nd ER visit basically the same, but no treatment AT ALL. couldn't breathe, had to hold my finger in back of jaw in mouth to keep airway open and lay in a bizarre twisted way on couch, but EMT's put oxygen saturation on finger and it said 98%. I said I'd taken an alprazolam and they said they knew I'd "been taking something" because my eyes were weirdly dilated (non-matching dilation). No exrays, nothing. Got to ER, heard my story, told me to follow up with jaw dr. and psychiatrist.
Third time went to Myofascial Pain Clinic here in town (they'd seen me & told me to learn how to "breathe" because was "obvious" my "parasympathetic nervous system was kicking in" and had told me to ask GP for valium instead of the alprazolam, and come back in two weeks. But when I'd gone to GP, she refused to give me valium to replace the single alprazolam a day, acted like I was "drug seeking" and told me to go to a particular in-patient detox clinic!!!! I was so exhausted and tired and hungry and scared i knew I could not stay alone another night (couldn't lay down and breathe!) so actually WENT TO THE DRUG CLINIC! Well, OF COURSE they wouldn't take me, I'm not nor every have been, a drug addict. So I'd stayed in my car by the myofascial pain clinic till they opened and the next day and went in without an appt and explained what had happened. They put me in a room and eventually walked me down to Head Trauma in the E.R. where I stayed for NINE hours, was interviewed by every resident known to man, NEVER GIVEN AN XRAY, CSCAN, MRI, MRA, NOTHING, only valium "taper" (as if I was an addict), and eventually sent home with instructions again to see psychiatrist and jaw dr, because of my "complaints."
Yes, all this is a true story. So my best friend came from different state & saw I was having spasms all over face, head, etc. took me to nyc and there was given MRI, cscan, orthodontic appliance to keep jaw & airway open while sleeping, daytime bite plate, dx: secondary hypothyroid, given jobs stockings for swollen legs and feet, propanalol for anxiety/tension when going to sleep, an inhaler for inflammation of alveoli, a diet for leaky gut, IBS, magnesium for spasms, Wobenzym for inlfammation, trigger point injections to head, neck, scalp, botox in masseters.
MRI CSPINE: no compression, yes to loss of lordosis, partial disc diseccation changes at mid & upper cervical level. disc spaces and vertebral body heights otherwise well maintained & display acceptable sign.
BRAIN MRI: vascular asymmetry with small right internal carotid artery and right vertebral artery seen. no scalloping distinctly seen to suggest avasculitis. MRA may be performed for better evaluation.
endoscopy/colonoscopy: functional dysmotility, GERD, slow emptying, constipation, incomplete evacuation, esophogeal stricture, received esophogeal dilation while totally knocked out w/anasthesia. noted tertiary esophogeal contractions while out.
I've spent two years recovering from all that, and one year basically "normal" again, except taking hypothyroid meds, vitamin D3, 1000 mg daily of magnesium because when tried to stop got contractions again, and finally given 150 xl wellbutrin for brain fog and fatigue. it worked well, but just took edge off fatigue & body pains. then prescribed adderall for ADD and it took my fatigue away and gave me back my "normal" life of 15 years ago.
Now had a second episode two months (almost three) during which I experienced my first serious car acciden (didn't see car coming, at all?) but without convulsions, and only 1 night of non-sleep. Refused to go to ER, so waited till morning and went to shrink, then to pysical therapist. cervical neck strain, and 1 cspine xray showing more of the same. Neurology appt in 2 weeks. This time also had crazy itching, night sweats, red ears, and PT diagnosed POTS unofficially by doing laying, sitting, standing pulse and then exercise pulse. (cannot exercise, cheeks turn blue).
I'm so tired of getting run around. New pyschiatrist said all was "anxiety" until he got to know me better & I told him that if he proved it by ruling physical reasons out, I'd accept that dx. Asked him to explain the tertiary contractions while totally out under anesthesia. he was sure pulse and anxiety were combo of wellbutrin 150 xl 1 x daily, and and adderall, 30 mg 2 x daily, plus thyroid meds. tapered wellbutrin and back to 1/2 that and pulse even higher. ecg says pulse 110, sinus tach, low voltage in frontal leads.
Here's my "Red Ear" (and i'm wearing the jacket because I'm cold. in my own house. I had been watching TV when this one came on. And my nose swelled and got red, too. No, no alcohol. Just watching TV!) oh, I'm new so it won't let me post link to pic.
I'm almost "better" again. Spasms gone. Sleeping fine. Fatigue worse than ever, brain fog better, anxiety gone, swelling of legs & feet still present, eyes only sometimes strange feeling. but now nausea and flu feeling, moderate loss of appetite, forearm soreness, weird tinglings & pain, flushing neck, weakness (have a hard time opening medicine bottles, lower legs have fatty atrophy). swallowing problems & swallowing problems come and go.