Discussions By Condition: I cannot get a diagnosis.

I need to know what's wrong with me

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: AAMoore2
  • April 19, 2013
  • 06:15 PM

Hello. In November of 2012 I was taken to the ER after I became confused while driving. My thoughts were jumbled, I couldn't remember where I was or what I was doing, and I was severely nauseous, dizzy and lightheaded. The attending physician said she thought I'd had a seizure and sent me to a neurologist, who scheduled a CT scan, an MRI, and an EEG. All came back negative except for two things: Nausea with flashing lights during the EEG, which they said was most likely due to migraines, and mastitis on the MRI, which was treated by my primary physician with penicillin, but which could have been due to allergies. I continued to have frequent periods of spaciness/dizziness, particularly when in a car at night. In December I was taken to the ER again after experiencing one of these episodes, which quickly intensified into a feeling of utter panic coupled with trouble breathing and chest pain/heaviness. My blood pressure in the ambulance was 200/115 (I'm normally 120/76-80). I also had a funny thrill-like feeling (hard to explain, kind of like the feeling one gets while dropping, like on a rollercoaster) constantly running down my spine and through my stomach, with severe nausea. My muscles also tensed up to the point of hurting, I was very hot to the touch, and I had uncontrollable tremors. This episode was diagnosed as severe anxiety/panic attack, and I was given IV Ativan. I calmed down, but the thrill-like feeling remained for hours, accompanied by some nausea. The attending recommended that I also see an endocrinologist because these dizzy, confused spells seemed to happen on a regular schedule (mostly around 7 pm and 3 am). Urine and blood test for endocrine issues were negative. Shortly after these episodes I began experiencing a debilitating depression which affected my school work. My college referred me to employee assistance where I was hooked up with a psychiatrist. By then I had been through two weeks of anxiety so extreme that I would barely leave my bed, even to eat or go to the bathroom. I was afraid that moving would bring on some severe attack similar to the others, but that it would be much worse and I might die. The psychiatrist prescribed Celexa for my depression, Lamictal for depression/anxiety, and Xanax to be taken only if I felt panicky. I took them exactly as prescribed and my depression and anxiety were almost entirely non-existent within a month. However, I continued to experience periods of dizziness and an out-of-body type feeling, sometimes with the nausea, which would send me into a state of anxiety, which would trigger spikes in blood pressure, stiff muscles and tremors, and extreme nausea. I would take .5 mg of xanax and feel mostly better within 20 minutes. These episodes seemed to relax after a few months, but then I began having horrible digestive issues: pain, nausea, constant burning and stabbing feelings, diarrhea and constipation, trouble swallowing, pain with swallowing.... just a general, consistent feeling that my insides were on fire from my mouth all the way down. The attacks of dizziness, dream-like feelings and nausea continued (3-4 times a day) while I got my digestive issues under control. I have continued to treat these episodes with Xanax, which works most of the time. Repetative thoughts during these attacks have been added to the list. Usually just one word or phrase. Then, during a more intense episode (they seem to be much worse in the middle of the night - I wake up and they come on) a had very sudden bilateral blurred and double vision with pain and a feeling that my eyes were under intense pressure. It happened twice during this episode and seemed to resolve on its own. I want to note here that about 4 months prior I had a 30-60 second episode where I looked at something on my wall, then tried to focus on my computer screen and my right eye got "stuck" to the side, causing immediate dizziness and nausea.
Recently I've had two ER visits in one week, both of them for stomach pain and nausea followed by a dream-like, distracted state, dizziness, dilated pupils and hallucinations. The first time I remained under observation for 14 hours because my blood pressure had dropped to 70/45 and remained so despite 4 LITERS of IV fluid. Diagnosis was hypotension and possible toxic ingestion (GHB?). The second time I was very giddy and had stiff, spastic movements in my legs when I tried to walk. It resolved in an hour and I went home. Diagnosis toxic ingestion based on previous visit. That last one was yesterday. During the day I experienced two more episodes of the same thing, only with no pupil dilation. Today I've had one so far.
Other symptoms (coming and going): Red rash on both cheeks with periods of numbness when touched, tingling feelings in my arms and legs, shooting pains in my extremities, more frequent migraines, sinus pressure, sharp transient pain behind one or both eyes. After these episodes I now experience extreme states of exhaustion and may sleep for hours, which is affecting my performance in school.
Additional facts:
I have a history of bipolar 2, well controlled
I have a history of anxiety (but not panic attacks)
I have been experiencing the dizziness/nausea/strange dream-like feelings for almost 8 years. In the beginning, they happened between 3 and 3:30 am and went undiagnosed.
Years ago I had two episodes where I was walking quickly (waiting tables) and suddenly lost my balance. It literally felt like the floor opened up under one foot and I fell into a hole - but the floor was still there, of course.
I go through digestive "flare-ups" with all above symptoms and burning urethra/cramping abdominal pain while urinating (no infections found).
I DO NOT use illicit/illegal drugs, nor do I abuse any other substances.
I have a history of fluttering heart palpitations and fast heart rate (at one time due to a med I was taking, but also has happened without).
I have a recent history of head trauma, twice from two different car accidents. Both were light concussions.
I was hospitalized once in 2011 for a complex migraine (intense pain and nausea, vomiting, loss of coordination, loss of all feeling on one side of body).
I have steadily been losing weight for the past year despite eating more than enough and decreasing exercise. I am now 110 lbs. Normal is 125.
Medical testing (all negative, some multiple/repeated):
EEG
EKG
CBC-diff
Additional blood tests for cholesteroll levels, etc. What they would run with an annual physical.
Electrolytes
Blood glucose
CT (head)
MRI (head)
Urine (various stress hormones, pregnancy tests, infections, anything else "off")
Toxicology screenings

That's all I can think of. All medical professionals are at a loss. My depression has returned despite meds due to the stress and debilitation from all of these issues. I've had to stop working. I now owe thousands in medical bills with no way to pay. Please help?????

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2 Replies:

  • Okay I just read a lot so bare with me if I ask a question you posted already. Have you checked your vitamin levels? (Iron, vitamin D) etc? and thyroids? I am anemic and low on Vitamind D Let me tell you.... I felt the same way you are describing for like.... 12 years or something. FINALLY a doctor told me to take some vitamins. I did and guess what? they were slowly going away. My brain fogs that made me just believe I was stupid is slowly going away and I can concentrate WAY better. NEVER in my life thought it would go away.. ever.... and I had terrible anxiety because the pain and stuff was driving me crazy. Youre getting that because of the low vitamins im thinking. For anxiety, take niacin and vitamin C. Simple vitamins have HUGE effects... Look up what vitamins are best for your synptoms and TAKE THEM. EVERYDAY. Dont stop taking them. BE PATIENT. I hope it will work for you. and make sure to check your iron and vit d levels at least for sure if you have not. If you ahve and they were normal, still, look up what vitamins are best for your symptoms. good luck.
    Anonymous 42789 Replies Flag this Response
  • Thanks Rika. The only thing that has ever come up deficient in my blood tests is vitamin D, which I take. Iron levels are fine and my thyroid has been checked multiple times. I've been wanting to look into niacin anyway, and I'll try anything at this point! thanks for the advice, glad you're better :o
    AAMoore2 4 Replies Flag this Response
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