Admitted to hospital overnight

General General TN & GPN (Old Site)
1

Hello all.

As I have previously mentioned I was thrown for a loop when I was hit on the 16th of Novemeber with TN which at the time I ascribed to dental pain. (I have not had dental work done for years and years by the way.) As another member mentioned, I have been very lucky to have been diagnosed so quickly.

Yesterday I was getting ready for a meeting and my mouth started feeling "funny." On top of that I had just been telling my husband that I thought I was getting to point where I may begin to tell If I am going to have attacks. Being so new however, and in a state of denial thinking each attack will most likely be my last, I ignored the possible signs. A couple of minutes later "BAM WHAM KABOOM."

I had already taken the Carbamazepine my neuro doctor prescribed. 200 mg 2 x per day. (When I had the last bout that took me to the hospital and they didn't do anything for me except a prescription of 10 pills of Naproxen which the ER doctor from last night and the Neuro guy today laughed at.)

So any way, yesterday afternoon my mouth started to feel funny. I kept thinking I was imaging things. Hell no. Not wanting to take a chance though I shouted to my husband to get me another Carbamazepine. My neuro had told me to up the dosage to 3 if I got the attacks and go to 4 if that didn't help. Then he said if I had to go over 4 go to the ER. Well the attacks just kept coming and the Naproxen didn't do a thing. So toy dog duck in my mouth to bite on off we went to the hospital again. This time things went a little different.

Earlier in the day I had prepared the form that Red has drawn up, a medical history form I found on the web, and the picture I drew of the pain. When we got to the hospital I had my husband drop me off so he could park the car, I didn't want to waste any time, and I went in an pretty much about threw the papers at the registration people. I still had the darn duck in my mouth. I don't know anyone else has done with these papers but they sure did the trick for me. I didn't have to wait to be seen at all. This time, instead of a PA only I had nurses, doctor, techs, etc. They put a port in my arm. It took 3 doses over a few hours but I finally did not feel my mouth. They also gave me IV doses of Prednisone and something for nausea.

There was discussion between the ER doctor and the doctor who was on call from the neurology department and the doctor in charge of admitting. I begged to be admitted. I just couldn't bear the thought of going home without something that would help with the attacks. I was admitted thankfully. I was given more anti-inflamitory and Dilaudid was the pain medication.

I was told the next morning, about 6:45 today that I would be staying until they figured everything out......NOT. As it was I had to wait 3 hours for all my bipolar meds. Turns out one of them had to be hand delivered from the main hospital for goodness sake.

The morning PA and Nurse had never heard of TN which probably has something to do with the fact that they kept referring to me as a TMJ patient. I had to correct them numerous times and finally asked if they knew anything about TN. They did not and I may have indicated they should read up on it before attmpting to talk to patients about conditions they are not knowlgeable about.

It does not help my cause either that I am a "terrible" patient. Excuse the hell out of me if I want more than 5 minutes or something fully explained. A doctor from the neurology practice came to see me and after complimenting me on my picture proceeded to turn into an ass. He told me he had disagreed with the ER doctor from the night shift about admitting me he also said that I had a benign case. What exactly is a benign case, I didn't really have time to ask because he said "I'm in a hurry now."

I have looked up benign TN and the only things I see are about benign tumors and such. SO the thought I had, which was my case is not important isn't necessarily the case? Longer story short...

I reached my own dr.( by the way if you are a patient in the hospital I was in you are not allowed to have the drs. answering service call you back. It must be the nurse who calls or one of the other hospital drs.. However, it can be your husband. Crazy!) and it was more comforting to speak directly to him and not through a bunch of other people. I told him what had been said and he gave me instructions on upping my Carbamazepine by 1/2 4 x per day while taking my Prednisdone. He also said to call tomorrow, Monday and reschedule my appointment for asap and not wait until January.

So now I am home, worrying about the next attack. I really ADMIRE those of you who have managed to stay alive with this condition.

Regards,

Phoebe (And as I said, the medical info & pic DID work.)

2

I am newly diagnosed about the same time as you..... I too, for the first few days was silly about thinking the last attack was the the LAST attack, if you know what I mean. Finally, I admitted to myself that I was being stupid. I can tell you what helps me when I feel an attack coming. For me, my mouth feels funny and I get a few smaller electric shock feelings about 20 minutes after I eat. As soon as I feel those cues, I run, and I mean RUN for my medication. I take a tegretol, a vicodin, and an aleve. My doctor said that most medications are only really good when to prevent it, not necessarily to stop the attack... I don't know if that is true or not, but it has helped. When the episode starts, it is 1/2 of what they have been. Meaning, I don't want to die. They are uncomfortable, they hurt, but they do not feel like someone is putting a jackhammer to my face.

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Thank you very much for your comment.

The doctors here have been slow to help me in IMHO. I don't know if it is because I am so newly diagnosed and it is uncommon to have so many attacks so often at the beginning or what. I have the dumb worry that the MRI will come back negative. I SHOULD BE HAPPY if it does right. No MS, No Tumors. But if there is no evidence of the TN I am afraid they will think I am low priority.

I have read where TN involving the nerve and a loop are sometimes not discovered until surgery.

As for drugs, we just started. However, I am a little more limited because of all the other medication I am on. I just guess I have to play it by ear and be armed with info :)

Regards,

Phoebe

4

Phoebe: at least 10% of all blood vessel compressions of the trigeminal nerve are not seen in MRI before the exploratory phase of an MVD. The figures may be higher, because imaging practice still hasn't been standardized. Patients with trigeminal pain should receive MRI under the FIESTA protocol, both with and without contrast agent, and with post-procedure 3-D processing for sub-millimeter resolution and visualization.

Iamrite, the comment of your doctor on prevention versus acute care is at least plausible. The classic Type I Typical TN with its lightning strikes of electric shock pain is characterized by many physicians as a sort of neuro-chemical cascade process. Once started, this kind of breakthrough pain can be a bear to get stopped. Thus it is much preferable to dampen down the nervous system before attacks can occur.

Regards and best both,

Red

5

Wow, read your story!! I can't imagine a pain that's worse than TN!!! I too have wanted to die from this pain. Sad thing about TN is it doesn't kill you. What doesn't kill you makes you stronger???? Yeah right!!! People who have no idea about TN just don't get it. Luckily more and more doctors and health professionals are getting more knowing about TN. Thank God for that!!! Sometimes I wish I could just have a normal life...well, not sometimes, ALWAYS!!! It just takes away your "normal" life.......FOREVER!!