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Unread 02-07-2013, 07:09 PM   #1
jenparker1975
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Join Date: Feb 2013
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Hi,

I don't know where to start. This is going to be long, so please bear with me.

Mid-December I got the flu and was wiped out for several days. After that, I had pneumonia and was put on Zithromax. I took the Z-pak for 2 days and started getting a rash. So they switched me Doxycycline. I took that for about 6 days and got violently ill at work on the 6th day of that course. After getting ill, I got the worst headache over the right-side of my head that I ever had. I called the on-call and they thought I was having an allergic reaction and told me to stop Doxy and call my PCP back in the morning. The next day the headache was gone so I went back to work. Around noon that day, the right-side of my face started feeling like pins and needles and was partially numb, including my tongue and gums. Food tasted weird on the right side too. I called the on-call again that night and they sent an ambulance for me.

The ER took a CT scan, blood work, EKG and told me it was acute sinusitis causing the weird tingling numbness. The tingling would come in bursts and last only seconds. The partial numbness was constant.

They gave me Clindamycin (spelling?) which is another antibiotic. I took the first dose in the ER and several more doses. Since it wasn't getting better, I called my PCP. He switched me from Clindamycin to Levaquin and also gave me a steroid for my face. I took the entire 10 days worth of Levaquin.

2 days after I was done with the Levaquin, I was back in the ER. Another cat scan and they told me it was sinusitis. I went back to my PCP who said it wasn't sounding like sinusitis anymore. I had no other symptoms. I haven't had a fever and no congestion at all since the end of December when I had the walking pneumonia.

He ordered another CT scan and more blood work. After the tests came back, he referred me to an ENT doctor. I went and they said I should go to a neurologist. The CT scan showed a partially blocked sinus passage on the left side of my head, which isn't even the side that is bothering me! So now I don't know if they took my right side at all in the CT scans they had done previously. :-(

All the while, the frequency of the "attacks" are about probably 10 attacks a day, with several of them resulting in my mouth feeling really tight and not wanting to open and my ear "drumming". I don't know how else to describe it.

I finally got in to see a neurologist on Monday. He did some reflex and other tests where he pricked my face, etc. Then he ordered an MRI and gave me paperwork on Trigmenial Neuralgia. He said he wanted to remain neutral about what might be causing it until they see my brain. I'm so afraid it could be a tumor. I'm 38, and I'm terrified of leaving my kids without a mother.

I go for my MRI next Wednesday and a follow-up with the neuro is scheduled for the following Thursday. So it's 2 weeks before I learn anything at this point.

It's also now that the attacks are leaving me with headaches above my right ear. Today was especially bad with LOTs of painful attacks. I don't know if I should go to the ER or if I should wait it out until Wednesday for the MRI. I feel like I'm wasting precious time they could be treating me. My husband says that if it were really urgent they would have scheduled the MRI sooner. I don't know what to do, and I'm so scared. I also feel like the ER doctors that I've seen just don't believe me. I think if I go to the ER, I'll get the same lip service about a sinus infection.

Sometimes the pins and needles shock feeling makes my tongue vibrate and lips vibrate and goes up the right side of my nose and makes my eye twinge. Is this normal? Does this sound like TN? sometimes I even find myself biting my tongue on the right side without really realizing it. Is that normal too?

On top of that, I had a dentist appointment today and they found a small cavity in my right back molar. Could it be related?

If anyone can offer me advice, I would greatly appreciate it.
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Unread 02-10-2013, 05:19 PM   #2
EE03
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Originally Posted by jenparker1975 View Post
Hi,

I don't know where to start. This is going to be long, so please bear with me.

Mid-December I got the flu and was wiped out for several days. After that, I had pneumonia and was put on Zithromax. I took the Z-pak for 2 days and started getting a rash. So they switched me Doxycycline. I took that for about 6 days and got violently ill at work on the 6th day of that course. After getting ill, I got the worst headache over the right-side of my head that I ever had. I called the on-call and they thought I was having an allergic reaction and told me to stop Doxy and call my PCP back in the morning. The next day the headache was gone so I went back to work. Around noon that day, the right-side of my face started feeling like pins and needles and was partially numb, including my tongue and gums. Food tasted weird on the right side too. I called the on-call again that night and they sent an ambulance for me.

The ER took a CT scan, blood work, EKG and told me it was acute sinusitis causing the weird tingling numbness. The tingling would come in bursts and last only seconds. The partial numbness was constant.

They gave me Clindamycin (spelling?) which is another antibiotic. I took the first dose in the ER and several more doses. Since it wasn't getting better, I called my PCP. He switched me from Clindamycin to Levaquin and also gave me a steroid for my face. I took the entire 10 days worth of Levaquin.

2 days after I was done with the Levaquin, I was back in the ER. Another cat scan and they told me it was sinusitis. I went back to my PCP who said it wasn't sounding like sinusitis anymore. I had no other symptoms. I haven't had a fever and no congestion at all since the end of December when I had the walking pneumonia.

He ordered another CT scan and more blood work. After the tests came back, he referred me to an ENT doctor. I went and they said I should go to a neurologist. The CT scan showed a partially blocked sinus passage on the left side of my head, which isn't even the side that is bothering me! So now I don't know if they took my right side at all in the CT scans they had done previously. :-(

All the while, the frequency of the "attacks" are about probably 10 attacks a day, with several of them resulting in my mouth feeling really tight and not wanting to open and my ear "drumming". I don't know how else to describe it.

I finally got in to see a neurologist on Monday. He did some reflex and other tests where he pricked my face, etc. Then he ordered an MRI and gave me paperwork on Trigmenial Neuralgia. He said he wanted to remain neutral about what might be causing it until they see my brain. I'm so afraid it could be a tumor. I'm 38, and I'm terrified of leaving my kids without a mother.

I go for my MRI next Wednesday and a follow-up with the neuro is scheduled for the following Thursday. So it's 2 weeks before I learn anything at this point.

It's also now that the attacks are leaving me with headaches above my right ear. Today was especially bad with LOTs of painful attacks. I don't know if I should go to the ER or if I should wait it out until Wednesday for the MRI. I feel like I'm wasting precious time they could be treating me. My husband says that if it were really urgent they would have scheduled the MRI sooner. I don't know what to do, and I'm so scared. I also feel like the ER doctors that I've seen just don't believe me. I think if I go to the ER, I'll get the same lip service about a sinus infection.

Sometimes the pins and needles shock feeling makes my tongue vibrate and lips vibrate and goes up the right side of my nose and makes my eye twinge. Is this normal? Does this sound like TN? sometimes I even find myself biting my tongue on the right side without really realizing it. Is that normal too?

On top of that, I had a dentist appointment today and they found a small cavity in my right back molar. Could it be related?

If anyone can offer me advice, I would greatly appreciate it.
TN can be a hard condition to diagnose so keep that in mind while you are waiting. The MRI is part of the diagnostic process so you really need to wait for it to happen, be read and forwarded on to the neurologist. [b]I know its hard to keep calm while waiting[b] but until the doctor has all the info available, he won't give you a firm diagnosis. You are probably imagining the worst and you need to do everything you can to focus on the here and now and not drive yourself crazy in the interim. The old saying "cross that bridge when you get to it" keeps coming to mind. There are a lot of things that can produce these types of symptoms and as hard as it is to go through this, you've seen a lot of the different doctors who are involved in most of our experiences. All I can suggest is that you read up on TN and be prepared so if that is the diagnosis, you'll have a start on understanding what you're dealing with. TN isn't fatal but there is a big learning curve to understanding what your treatment options are and then what options are right for you. Again, I know all of this is hard to do, but until you know for sure, your really grasping at straws. I wish you the best of luck and hope that this is a fluke and that we never hear from you again. That would be the best outcome. None of us here enjoy welcoming new folks to this, but if it is TN, your always welcome. Take care, ee
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