Trigeminal Neuralgia Pain or more?

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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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  • Posted

    hi!omg!ur story is v.similar-i saw the dentist i need a couple ov teeth pullin out but he sed it ad nothin 2 do wiv my TNtype2(atypical)then i went 2 opticians& got glasses 4 reading & again woz told it ad nothing 2 do my TNTYPE2 also my MRI came back clear don't let it get as much u can help it I'd luv 2 tel u we all will get better but apparently it duzn't luk gud at the min but hopefully 1 day eh?lol! em x
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    • Posted

      Ugh trust me I’ve been trying! I am just taking it day by day… but I hope for you it gets better as well smile I wish this pain on nobody!!  x
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    • Posted

      hey!u can always cum & c wot every1 is up 2-i no u maybe not meant 2 but I'm logged in permanently coz I now no I'm not the only 1 goin thru all this crap on a daily basis,families r supportive but the just don't quite get it,I think?but u no were 2 cum & chat now yeah?lol! em x

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  • Posted

    Gosh you have been through the mill havent you, well i have had 3 flare ups, i had shingles a few years back when i was diagnosed with a rather low B12 and Folate deficiency. However i started with TN 2 years ago and must say i have just had my 3rd flare up and worst ever flare up headaches, excruciating pain in the side of my face, to the point i was nearly passing out, i was sick, the pain in my jaw and the teeth ache all of them upper and lower was awful. I was on gabapentin but the dosage was to low, so it was increased to 400mg 4 times a day, along with paracetamol 4 hourly and ibuprofen 400mg 8 hourly. and still the pain would break through.

    Now something you said which has rung alarm bells with me is the ITCHING, omg the itching and if you scratch it burns, my scalp alll round my neck legs back stomach its is just awful, because i have arthritis in my neck and have deveoped dodgy stiff knuckles i have been referred to a rheumatologist (not neurologist) as they think my TN is linked with my arthritis which has just been diagnosed as poly arthragia, but the itching they have referred me to a dermotologist, my neck is itchy and feels waxy its horrible i am travelling to the Himalayas in June July and hoping the warm weather will help, what have they said to you about the itching, its driving me bananas. If its helps you, you have doen well to keep up with your studies im currently on a BSc(hons) Natural Science (Earth Science) and i have just deferred until October as the work load got to much,with the pain and medication, but i think you have doen really well to continue  x

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    • Posted

      Has not be a fun ride! But it sounds like you haven’t had the best time either sad I know for my jaw pain I try to relax it as much as I can and laying down gives a little bit of relief..I have a space heater in my room that adds extra warmth, definitely adds to the relief. and yes the itching it so annoying!! it usually gets worse when I am about to go to bed. For the longest time, I thought I had bed bugs but I am in a new apartment with new bedding and everything! Showering sometimes helps the itching but then it will hurt my face. It’s like you can never win with this! I hope your travels help with the pain because at least for me the warm weather definitely made a difference! Honestly I should have taken a semester off I am computer science major and it requires 100% cognitive function but I am doing the best I can everyday… Thank you for your support, its really refreshing! My friends are getting so frustrated and annoyed with me, they say, “You seem fine you don’t even look sick.”  ugh but I hope you get better!! x
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    • Posted

      Yeh i have just been off work for 4 weeks but they all say the same but they dont know, you have really well to continue your studies keep up the work and dont give up like i did im regretting it now as its going to take me an extra year to graduate. I sleep with my painful side on a hot waterbottle and that really helps, but like with you the water and eating and cold wind, hurts. I was the same with the itching i kept thinking bugs and was making it worse, but its always in the evening and bedtime, my GP has suggested i take an antihistamine for the time being until i can see the dermatologist. I hope you feel better soon and you get some relief i am always around if you need a chat, i dont mean to sound awful but i glad i found someone else who is itchy i was begining to think it was just me x but i dont mean it horribly because its isnt nice but i was just beginning to think it was me because no one else mentioned it only you. 

       

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    • Posted

      Honestly, your health is more important, there is no rush to the real world! its not going anywhere haha…oh no I totally know what you mean about the itching trust me! It’s nice to know it’s not all in your head. Has any doctor ever mentioned lupus to you? I have been mentioned that a few times from the itching and the butterfly rash on my face. Try looking into it. Same goes to you if you ever need to talk smile
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    • Posted

      I have read about lupus but I don't have that rash on my face although my face itches too , my ears were reply bad last night today it's my face I had some blood tests today and the nurse bless her look puzzled and said there's definatly something going on there, GP told me it's allergy bit it's not I know it's not arrgh they don't listen I think sometimes they just fob you off to get rid of you
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    • Posted

      Hi,have only just joined this group, but your mention of B12 and folate, and itchiness, made me wonder if you've been tested for underactive thyroid (Hypothyroidism)? Just a thought.
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    • Posted

      Funny you should mention it im not B12 deficient at the moment im in range over 300 at the moment, so thats ok however i have today been and had blood test for thyroid function, so will know in a few days ive taken oriton tonight and to be honest im still itcy and only taken the edge of it
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    • Posted

      yeah sometimes they mistake it for celiac disease rolleyes its very frustrating and insulting like why would I want to be sick I'm 20 years old!! haha but also I wanted to ask do you still have your appetite? For the last 2 weeks I am never hungry! I mean I feel kinda hungry but if I try to eat I just feel full and not hugnry. It's so annoying cause I need to eat.... 
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    • Posted

      hi!I've as a ruff past couple ov days the cold weather really duzn't help,myy heat packs & hot water bottle r on over time lol!hope u r avin a gud day? em x
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