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(This is extremely long but I am EXTREMELY desperate in trying to get better..)
I am 20 years old female,
In September (2014), I was feeling more tired than usual with. I didn’t think it was that out of the ordinary since I am student so I figured the work load was getting to me… It’s Junior year. But I had been developing headaches which I was not use to getting since growing up I NEVER got headaches, now they seemed to happen everyday.
Then I started to become very itchy and started to develop pins and needles on my left side. I also noticed unusual scab/blister on my stomach and a somewhat circle shaped red on my leg that had eventually crusted over (looking like white dots)
I went to the emergency room one night because my throat began to tighten up and my face became pale, I felt I was going to pass out. When I got there I was suppose to see a doctor but I ended up seeing a nurse practitioner who basically shooed me away, telling me it could be allergies.
It only became worse. The day of halloween morning my left eye had become extremely red and itchy. My boyfriend was with me, he thought it was pink eye. I had drops from the summer so I used them but it didn’t get better. The next day I developed a fever and basically didn’t leave my bed. I had tinglingly feeling along my left side, my scalp felt like it was on fire and I was in a lot pain. The following day I woke up, I couldn’t see fully out of my left eye. I had an excruciating headache but it was only my left side. My friend drove me to the health center (at my school) and they wanted me to go to the emergency room immediately.
Eventually, the neurosurgeon of the hospital diagnosed me with Shingles and had me start taking Famcicvoloir and Polymyxin B Sulfate-Trimethoprim Ophthalmic for my eyes.
Mid November, still was in pain, I came home again. My mom noticed how blotchy my face would get and it was constantly itchy. So I meet with my pediatrician who started me Famcicvoloir again. She also suggested I met with an ophthalmologist because of my eye issues.
So I met with ophthalmologist who basically wrote me off could not have been less interested if he tried. He told me he never suspected I had shingles in the first place and that my eyes are fine.
In early December, I am not feeling any better I begin to feel worse… the same symptoms I had been having for months, in addition, the left side of face was killing me, the slightest touch against my face would cause extreme pain. A year ago I had my wisdom teeth removed except my bottom left one. I started to think “ Omg I figured it out, its my wisdom tooth!” (The reason the oral surgeon didn’t take it out at the time was because it was too close to my nerve.)
So my mom made an appointment for my oral surgeon to take the last wisdom tooth out during my winter break. I had my wisdom tooth taken out on Monday but was leaving for vacation that Friday.
(That Thursday I met with him again before I left for vacation, I guess my face had become all blotchy and he asked, “Have you ever had the herpes zoster virus?” I said, “Actually yes I am I recently finished a course of medication for it.” he then said,” I don’t think it’s over.” I thought that was interesting that he said that…)
Anyway, since I would be out of the country my oral surgeon put me on antibiotics, steroid and pain killers, to be extra cautious. I had a normal recovery that week, until Saturday. I was in excruciating pain on the left side of my face. Needless to say my vacation was not a vacation at all. When I got home (a week later) I met with my oral surgeon and he checked me out and said where my extraction was, looked fine, nothing unusual. Thats when he mentioned Trigeminal Neuralgia and that I make an appointment with a Neurologist.
Finally in January, I meet with a neurologist, in which after asking me a bunch of questions, said he doesn’t think I ever had Shingles. Instead of the symptoms I was describing he felt it was Trigeminal Neuralgia.
While talking to him, it was brought up that I was in a bad car accident over the summer (July) in which I was driving and was hit full impact by a double tractor trailer. I proceeded to tell him I was not brought to the hospital immediately after the car accident. I did however go to a walk-in clinic the next day where the doctors tested me for a mild concussion and my left cheek felt like a part of it chipped so she ordered a orbital scan which unfortunately I did not get (insurance issues). However, the neurologist did not believe the car accident and my symptoms were connected because of the gap of when my symptoms started to when my car accident was. But he ordered a head MRI to make sure it wasn’t anything serious. It came back clean which I kinda suspected myself. He started me on Carbamazepine for my TN which I was on for about 2 months. In those 2 months I was constantly in pain, EXTREMELY exhausted/drowsy, and had memory/cognitive issues. As a college student, that does not work well!
Now frustrated and angry, I had scheduled another appointment with my Neurologist except its impossible to meet with a neurologist because they are so busy! So I met with his Physicians Assistant. I would be going home that week for spring break. (Unfortunately I had developed laryngitis so I was dealing with that as well as my usual face pain.)
When I met with the physician assistant, we discussed how I felt while taking Carbamazepine. She told me to slowly stop taking that and has put me on Gabapentin and muscle relaxers.
In addition, I had mentioned to her that this episodes I was having (even before taking the medication) in January, I remember I went to grab lunch with my boyfriend and about 15 minutes into being back home I had this weird sensation throughout my body, I became extremely shaky like I was about to faint, so I laid down on my couch and felt this weird sense of dejvu. My heart was pounding so hard I felt as if it were about to pop out of my chest, I honest to god felt like I was on my death bed. I vaguely remember my mom talking to me asking what was wrong and I just laid there. My memory was hazy I couldn’t really grasp what was going on. I ended up falling asleep. It was all really strange it’s like a dream so I can see it when I think about it but it’s hard to explain.
Before that time it occurred in October, while I was at school we were out for lunch, and all of sudden I had that shaky feeling throughout my body, my heart was pounding but I didn’t pass out or anything I just needed to sit and it eventually went away.
AGAIN in February (This time I was on the Carbamzepine), I was talking to my roommate in her room and came back into mine, then all of a sudden I felt that shaky feeling throughout my body, my heart pounding, and that sense of dejvu. So, I laid on my right side with my arm out in front of me but this time something happened that hadn’t happened before. My arm kept jerking/moving, I know it’s doing it but I can’t control it. And I developed this strange urge to cry but no noise can come out just tears.
As I told my neurologist she thought it was strange and decided to order an EGG which I will be getting in May.
When I met with her it was in early march and I was leaving for vacation the next day, so we needed the scripts for the medication to be called that day. However, someone in the office forget to call it in so I didn’t have it on the trip. While on vacation (I was in Mexico with my family not the typical college spring break) my face pain didn’t feel as bad (I was on no medication). I finally felt happy again! I did have a few times where it hurt but nothing like at home which made me think the cold (at home) exasperates it and maybe in the summer it will go away. When I finally got home, it started to hurt again and by night it was in a lot pain. So I took one of the muscle relaxers (Baclofen) and it helped a little.
Now I am back at school, in pain all over again. The muscle relaxers don’t give me that much relief maybe like 10 minutes.. I also feel pain in my left arm and heart it races really fast. As well as constant ringing in my ears it hurts.
Growing up I was extremely healthy, rarely got sick but then as soon as I came to college I am sick all the time…
Before this pain started I was a workout freak, I was always working out (healthy ways) I eat extremely healthy (maybe not eat as much as I should but I don’t eat junk food.) I was adopted from south america so I don’t know my family history that was brought up a few times for certain illnesses.
There are a lot of symptoms that don’t necessarily go together, I need someone who can look at the whole picture…
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