*scratch* *scratch* Oh man.... *scratch* *scratch*

Well, I've been on Tegretol for.... *checks calendar* 3 days now, and although it hasn't completely cured the electric shocks (didn't expect them to go away overnight), it has brought along a new friend to play named ItchyScratchyOMG.

I'm pretty sure, sitting at work, I look like I have fleas. I try to be as subtle as possible, but man! I'm itchy! What amazes me is I have absolutely no rashes, no skin discoloration at all. After scratching all night last night, I really expected some red areas.

I had a pretty rough night last night, between my teething toddler who cried pretty consistently from 1am to nearly 5am, and having had an attack of my own around 8pm...it was a long night!

It was the first timeI I've used the nerve gel that it didn't work, so that kind of dampened my spirits as well. I certainly didn't expect it to be a magical cure, since it's not even medicine (it's all natural homepathic stuff), but I was kind of hoping it would keep me going until we could see if the Tegretol works or not.

I'm still using the nerve cream whenever possible, but I've noticed it kind of has it's own funky side effects. Namely, that side of my face is mostly numb, even when I'm not actively using the cream. Is that a side effect of the TN or of the cream? It was really noticable last night when my face got flushed red (was time for the Prednisone) but only half of my face lit up.

I can say that the attacks have gotten more "typical" since this second round of Prednisone, and, I suppose, the addition of the Tegretol. Instead of the hours-long burning and aching that had initially made me suspect a tooth ache, now they are more like lightening strikes, or forceful ice pick jabs.

My frustration with explaining these attacks to my doctors seems to stem from the fact that I consider an attack to be from the first lightening strike to the last one, which can be about 20-30 minutes. Each individual strike is only a few seconds long though, and I think that is the typical pain respsonse that they are expecting me to report on. However, since I get upwards of 30 of these strikes within an attack, it just seems to make more sense to report on the whole event, instead of saying "oh, there's one. Yup, there's another. Oooh yup. Ow."

I don't know. I'm really struggling with how much information to give them. I feel like when I do research and I keep track of things, they look at me like a drug seeker or a faker. Even before all the TN stuff, this is how I am! My father was a pharmacist. Just because I can rattle off drug names and pronounce them correctly, doesn't mean I'm a drug addict. I haven't even taken most of the drugs I know the names of.

Okay, enough whining. My break is over. Back to work!

My thoughts went to Shingles..another autoimmune disorder...???!!!

GrandmaHoney: They actually put me on Acyclovir in case the pain was from Shingles, but I've never developed the rash, and the medication did nothing for the pain.

I actually only started itching since starting the Tegretol, so I'm guessing it's from that.

Hummm some at my Sjogrens support group have TN and also were diagnosed with shingles. It does sound like the med you are on and your doctor are on top of it...Bless your heart...our issues certainly are not fun..how long ago were you diagnosed with TN?

I was diagnosed by an urgent care person last Thursday, after previously being diagnosed with an ear infection and TMJ (I have had both, they are not this. But try to tell a doctor that)

My current primary care guy is out of town for three weeks, so on Monday I got to deal with a totally new doctor who was, ahem, less than nice and basically told me I wasn't in pain right.

He did ultimately prescribe the Tegretol as a test to see if I have TN, because my insurance won't cover an MRI "for no reason" (his words, I've actually had one a few years ago for migraines, same insurance).

I've been dealing with the pain since the end of August, so it really hasn't been that long.

Roselyn. Keep a daily journal...journal everything you can..moods, where it hurts and how it hurts, meds and med schedules...even post how y ou are doing one hour after you take a medication. and even when someone is around you and you suddenly get a symptom...journal as much as you can...I was not a journal person until all my medical issues began...and I tell you it is now part of my day and life...some things may not seem important then out of no where it is a big issue to your doctor. are you with an internal med doctor or neurologist? both of these are important...

I have started a pain journal and I find it quite helpful. No real patterns have jumped out at me yet, but it still seems like a good idea with my bad memory!

I am currently working with just a general med doctor. Waiting to get a referal to either an ENT or a Neuro guy. Unfortunately there is a lot of red tape involved because I have public insurance. :(

Proud of you...you are on the right track...hey another thing hit me...have you suddenly gone off any medication cold turkey...I had one of the basic medications that should have never bothered anyone to stop taking and I absolutely went nuts...!!!! I cant recall what it was..but it sure hit me hard and furious...another reason to keep a journal. Even some foods!!! I also list all my medications. so when I hit the er or any doctor they are easy for nursing to just copy print it off. I live in Montana where are you...?

I started a pain diary and it really helped me when I was referred to a Neurologist as my memory was so bad due to the meds, so good luck with that! I have also recently been put on Tramado land I can emphazise with you re: the scratching, it was really bad for the first couple of weeks, it's settled down a little now but I'm still scratching and when I checked the side effects to this, scratching was on the list!

As for reporting on the attacks, I was very much like you, getting several or more which lasted up to 30 minutes each time with a break of approx 15 mins then wham, back again - I ended up just saying that i get one after another lasting, however long, with another straight after which went on for a period of 30 mins with a break etc, as I got soooo frustrated when they were saying they don't last that long. Sometimetimes I think they do know what we mean but they have to be sure what sort of pain we are getting that they want us to be so precise about the type of pain we are getting - I hope that makes sense and hope that you get the help that you need soon!

Take care

Mandy : )

I spoke about Shingles way too soon an now I have to eat my words...I have just received confirmation I have shingles...doc prescribed pain meds and antivirus drug called Acyclovir 800 mg x 5 in 24 hours plus prednisone. I am trying to find out if its contagious...would you know? Have a nice Thanksgiving...stay well

Honey: I have read it both ways regarding it being contagious so I’m not sure.