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General General TN & GPN (Old Site)
1

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?

2

Phew, there is so much here that I have no answers for, so here is what I can tell you.
I cannot diagnose anyone, but the symptoms you describe are common to many members here, soit may well be TN.
The percentage of patients with TN that is caused by a tumour is small, there is a much, much higher chance that you do not have a tumour.
Worrying can exacerbate attacks, try to work on calming yourself. I try to remind myself that worrying will not change one darned thing.
I am sad to inform you that with a rare illness, we have to get accustomed to waiting for results etc, it’s part of the condition, sorry.
I really do understand your worries, it’s natural and we probably all have had these thoughts:-(
You could write to RED LAWHERN and ask for his expert opinion as he knows more than I can dream of, I wish you peace and calm.

3

Hi,
Sorry your going through this:( I have to agree with Jackie reply. I would only go to the ER personally if it was a knock me out attack and I can not handle the pain any longer at that point, but I can not tell you if should or should not go. If you do go perhaps try a different ER nearby.

You might want to look under the face pain info area and read more on medications and treatment for TN. If you do have tn learning all that you can is the best way to help treatment. I wish I had a better answer for you. Please let us know if you have anymore questions.

4

So sorry - and the pissy thing is that narcotics don't do much for us.... if a narcotic from ER wipes out your pain I would think you might not have TN

If you neuro finds anything on MRI - they will move up your follow-up appt.

Mostly it is to rule out MS believe it or not. Very few of the couple thousand on these boards have actually had TN from brain tumor.

I would hold off on any dental work until you find out if TN.... may need extra precautions

can you have your pcp write you up either some anti-anxiety med like clonazapam? Call them after hours - they might call it in.... it will calm your nerves and your nerves!

Also get from one of the docs - some topical lidocaine patches and lidocaine mouthwash until they figure this out! You deserve to be in less pain

If neuro suspected that you have TN - he should have given you an immediate trial on an anti-epileptic drug -- that's what stops the pain for mannnnnny.... it is the frontline thing to take!

Please keep posting - and come here to worry

5

Thanks so much everyone. I'm just really glad I found this site. I have been spending so much time reading at this point.

6

As Jackie said, there's just so much in your post that i simply can't address, but a few points i wanted to add...

When i'm having a particularly bad attack, my tongue does spasm on that side as well as getting little spasms up under my eye. Also, it is my firm opinion that no one should be in pain if it can be helped. So if your pain is bad, then yes go to the ER. Take that info about TN that the neurologist gave you with you and show it to the ER people.

For a long time i suffered with this, and with dr's who didn't know what it was or who thought i was just drug seeking..etc. But i've come to realize that you have to be your own advocate in order to get the care you need. Dr's are paid employees. YOU are their boss...if you are not getting the care you think you need, then insist on more. Go to different ER, go to different dr. Whatever it takes.

Also, i agree that if your neuro thought enough to give you info on TN, he should have given you a beginning prescription for the meds that can treat it. My dr said that the fact that i responded to them helped confirm the diagnosis. Maybe call the neuro and ask for a trial of carbamazepine? (or whatever other med he'd use for TN)

Regardless, know that you are not alone. *hugs*

Wishing you some peace and a pain free day

~Mistee

7

I have no answers, but I DO have some questions. Did your neuro give you a prescription for an anti-convulsant medication to see if that would stop these attacks? Because if the meds work, that is the indication that it is TN. Do NOT worry about that MRI unless you are told you have a tumor. They ALWAYS do an MRI to rule out tumors or M.S. as the cause of your TN. That is usually protocol. Anticonvulsants and an MRI to start with. Just read up and research as much as you can. And come here for support. You can message any of us whenever you like. Good luck sweetie and keep us posted. (((((hugs))))

8

I sure understand many of your symptoms and frustration. And even though I am new here, too, there's been a thought I've held onto that's REALLY helped me in the, "HELP ME MY GOD HELP ME!" moments, and that is:

"I have already made it through ______ attacks today. They hurt worse than anything I have experienced, but I made it through." For some reason, this helps me keep moving forward and not be snappy. (I can get snappy when I am in pain, and I don't want to be like that). It's empowering to know I made it through ONE of these horrible attacks, let alone the many that happen in a day. I am also proactive with my doctor and my care and taking my medicine as scheduled.

Like I said, i just started this journey, too. And I am a bit freaked out inside with all this--on top of the horrific pain. BUT...we're walking forward in this, together!

Blessings--Helenann

9

No, I didn't get any meds. The neuro said he wanted to remain neutral until he saw my MRI. All he really did was tell me it was Trigmenial Neuralgia, give me paperwork, and then schedule the MRI. He said he could tell me it was TN but not why I have TN until after the MRI comes back. He said he didn't think it was a tumor, but that doesn't mean I'm not completely freaked out anyway. LOL.

In all honesty, I'm just happy that there is a name for this. It makes it easier I think. And although it sucks to think so many people are going through this, it's good to know that I'm not alone and not going crazy. I go from being optimistic to pessimistic every 10 minutes it seems. LOL. I'm just really trying to keep it to myself in my house right now. My kids don't know, and I want to keep it that way until after the MRI results.

Donna Cook Turnage said:

I have no answers, but I DO have some questions. Did your neuro give you a prescription for an anti-convulsant medication to see if that would stop these attacks? Because if the meds work, that is the indication that it is TN. Do NOT worry about that MRI unless you are told you have a tumor. They ALWAYS do an MRI to rule out tumors or M.S. as the cause of your TN. That is usually protocol. Anticonvulsants and an MRI to start with. Just read up and research as much as you can. And come here for support. You can message any of us whenever you like. Good luck sweetie and keep us posted. (((((hugs))))