So Happy To Be Here Again

[macy]

Thank Heavens and all the Stars in the sky (and you too of course, John) I have missed Braintalk so much. I will never take it for granted again. Looking forward to catching up with all my old and new friends.Lets all get busy and start posting.
Macy

[Ella]

Good to be back. Hope people are still checking from time to time so they too will discover it's back on line. I tried to register with my original name, but it didnt work so I have to change my ID. I know I'm not the only one that had that problem, anyway great to be back!

[JeanC]

Well, it was more than three times but I just tried again and NOW I can post! I re-registered first thing this a.m. but never got the confirming email though I could log in, but not post. I was just debating whether to try a new username and gave it one more try and voila! YAY!

Good to see people coming in so quickly. I saw bobkat/Kathy a while ago. One thing I noticed was that though I could log in I didn't show up on the Members' list when I couldn't post. And now I'm there. [Here's a post by JL explaining why - http://brain.hastypastry.net/forums/showthread.php?p=159#post159 ] Still some glitches to be worked out, but things are coming back slowly. Also note that the TN forum has a different number than before so you may need to reset your bookmark (I'm sure John just went down the list creating the forums so they were done in a different order than when first created in an on-demand basis).

I sure hope John can load the old posts and stickies successfully - such a wealth of information and experience from all of you there. And so many people who were counting on support that have been without it for a while - I hope they're all doing okay and keep checking back to see that we're ba-ack!

Take care everyone and update us on your summers! :D

Jean

[Pat]

I hope the old threads will be back at some point. I have gleaned so much info and support over the years. Is there a way to get to them that I don't know about? Best to all. I am trying Lyrica now. Does anyone have any experience with it? Pat

[macy]

Pat,
I have been on 150mgs a day of Lyrica since July '06. I also take 500mgs of Tegretol each day also. So far, it is working fine.
I was on 2700mgs of Neurontin and 900mgs of Tegretol before and still had breakthrough pain.
I know I feel better than I have in 2 years. Hope it works as well for you. I hope to cut down on the Tegretol again and again until I am not taking any. It does help my pain ,but leaves me in a fog all the time, even small doses.
It is so wonderful to be communicating again.
Macy

[ella138]

I hope the old threads will be back at some point. I have gleaned so much info and support over the years. Is there a way to get to them that I don't know about? Best to all. I am trying Lyrica now. Does anyone have any experience with it? Pat

Actually there is a way to get to your posts
All you have to do is type this line into your Google search
"site:brain.hastypastry.net username"

where it says username, put in your user name you used before it crashed
for example I would type in site:brain.hastypastry.net ella138

Then you will get a whole bunch of hits. At the bottom of each hit there is a line that says "Cached-Similar Pages"

Click on Cache and Voila...all your posts come up. You can either save them as html or copy and paste them onto your harddrive for safe keeping just incase you want to reload any of them if Johns backup doesnt work.

[missyjo]

I am so happy this forum is back up! I hope everyone is going to come back!

[ella138]

Missyjo
I've been wondering about you. How have you been? How are you since your MVD. Last I remember you were having pains where the incision was. You called it something but I cant remember what it was. How are you doing with that. What about your TN? Hope you are doing well Lots of us ended up on BrainTalk2 but I didnt have our email so I couldnt let you know. Anyway glad you're back

[jgreene]

I had MVD on July 3 and all went so well. What a relief to not have pain besides post surgery pain. My neurosurgeon found three compressions 2 arteries and one vein, he said that out of the 800 surgeries he had done mine was one of the ten worst. I was back at work in three weeks part time, full time in four weeks. I think you over do because after the pain of TN surgery pain was minor. My doc didn't have me take meds after surgery and he tells me that there is only a 2% chance of it returning. I have some headaches and surgery sight ache but all is well.

[baywatcher]

What good news to return with. You sound like you're just ready to take on the world, pain free, drug free and worry free. It was so difficult being unable to be in touch with people who had just had - or were just about to have - surgery. No way to reach out and send best wishes or to celebrate. We'll have a real cyber-celebration for you here now!!!! Nancy

[missyjo]

Hi Ella! I finally went back to my neurologist and he confirmed what the surgeon had told me, that I had occipital neuralgia. I have had 2 nerve blocks that only lasted about 9 days each, and he will will only do one more then refer me to a surgeon to have the Occipital Nerve fried. I haven't been back for another block because I don't want him to refer to the surgeon, and I don't want to go back on the medication again. So I have been living in pain for about 2 months now.
I am starting to get stabs in my eye again from the TN, and the "crawlies" along my cheekbone, not a bad as the TN pain, but I think it is because I am still extremely numb from the MVD. I guess I will not get any feeling back as it has been almost 10 months from the surgery.
When this forum went off line, I searched for other answers and other websites for people that I can talk to, but was unable to find any. I was unaware of braintalk 2.
Has anyone heard from Stephanie?
Melissa

[baywatcher]

Melissa, I think there is still some hope that the numbness from surgery may decrease or disappear. When I had the parotid tumor surgery I had a lot of areas that were numb, my ear, behind my ear and along my jawline - numb but still with little tiny sparkly shock feelings - and I was told at that time that it would be permanent. So I more or less learned to live with it and somehow hardly noticed but slowly, over a period of several years, that faded away and I realized that I could feel things again. Only the tiniest residual sense of loss of feeling. That's the good news, the less-good is that to my surprise that area is now a little more sensitive, verging on slightly painful. (Not the tn side by the way.) Now some people might never notice, but since I have pierced ears I notice when I put the earrings in (or out). Still, don't give up hope. I also regained feelings in two of my fingers that were left numb after an injury from an auto accident, and that was way way back. It may be a very individual thing from one incision to another as to whether nerves recover or regenerate. Nancy

[macy]

jgreen, Congradulations. What wonderful news. It is so great to hear that sometimes all does go well. Whatever you are doing....keep it up!!
I am so happy for you, and so glad we are back so you can share your good news.
Lets hear from others. Good or bad this is the place to be. Honestly, this place has helped me more than several gps and 2 Neurologists.jgreen,keep us posted.
I know you have a Lot of living to catch up on, but thanks for remembering us here. Your doc sounds like a gem...kiss him for me.
Macy
(((((HUGS)))))

[papadrew]

Nice to have two places to go now. I tried checking in during the past a few months and hadn't any luck. Now not wanting to be dramatic, going through an episode that I haven't since the Gamma Knife. I think I have more going on then just the TN. I feel vertigo and like an ice pick in my ear. My ear has been clogged since my first diagnosis of TN. I had a bunch of standard hearing tests done and my ear appears normal... to them. Today have appt and I'm coming in prepared. It's hard to take it as I know you all know. It's hard looking normal but feeling like this. Doctors look at me like I'm crazy... Hope you all are well... Andy

[MarleneW]

Andy,
In looking at some of the information on the net about cranial nerve disorders I came across one called geniculate neuralgia. It much sounds like what you are describing. Here is the url if you would like to look at it http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/geniculate_neuralgia.html.
-Marlene

[papadrew]

Hi Marlene, Thanks for the info. I saw my regular Doc today{substitute Doc} reg's on vacation, He seemed very knowledgable about TN. He said I have classic TN. I'm wondering how he knows. It seems like when I mention my ear I get brushed off to the next subject. My next appt is Nov. 9th with my neurosurgeon and I hope he listens to me. Thing I hate about this or talking about myself is the woe is me, I have so much to be grateful about but this episode got me and life is interrupted. Does altitude trigger you or anybody? I was on my way to Denver on I-70 and had an attack. Currently taking 900mgs of Trileptal and building. The pressure in my ear is constant. The stabs are sporadic, same with the tongue in the electrical socket. At least the shocks aren't constant. I think the Trileptal is helping. I'm going off,but thank you again for your help. I know everything is temporary. Andy

[baywatcher]

Yes, Andy, altitude is a problem for many of us - it came up a while ago on the forum - but not everyone seems to have trouble. I can notice the difference if I go from sea level, where I live, to a few thousand feet higher. I wonder if it bothers us more because we seem to have ear involvement. I feel a lot of pain from the tn in my ear, external and internal both. Real deep earaches. Although I used to fly a lot, I had not flown for years until I took a trip to Toronto in '05; what I did was take more meds before going and also found some elaborate earplugs to use. I was very relieved to get through the trip without trouble.

I can commiserate with you on the other feelings as well. If I look at my life overall I feel as though I am one of the most fortunate people on this earth. I'm happy and active and creative and my life is so beautiful and exciting. For that reason I'm a bad patient in a way. I find it nearly impossible to dwell on how rotten I feel sometimes! So I go in to see the doctor laughing and joking and fooling around, and sort of paper over the things that I don't want to acknowledge. This is not good if you really need the help. It's like sitting in the ER bleeding all over their bedding and sponges and stuff while someone with a sore arm is whining and yelling - I wonder then, why the heck can't I learn to scream?! You all here on the forum are my heaven sent friends, you can understand what I mean if I say that I am happy - happy in caps and with exclamation points - but that sometimes I get just so doggone tired of having to structure life around the meds, their side effects, the effort that it takes to not impose my condition on those around me. Come on in, Andy, and {{{{{{SCREAM}}}}} anytime. And i hope the ear eases up a little, too, Nancy

[papadrew]

Hi Nancy, Ive always been a good patient but when I'm on these pills I feel like I'm Whinning and easily hurt. Thing I'm worried about is my surgeon up in LA looked at me when I 1st had my consultation about the Gamma Knife like I was an idiot for thinking my ear had anything to do with TN. It felt like that anyway. I've had so much relief as far as lightening bolts and sore teeth since the GK but the one constant bother has been my ear and it was the 1st bother long before my 1st blown attack 4-5 years ago... whenever it was Since the GK,the ligfhtening has been goneall except for a few times nothing unbearable but my ear has either been plugged ,knife like or tinnitus coupled with vertigo and I don't have a tumor and the tinnitus goes away like the knife attacks and vertigo but I'm always plugged. I hope I can remember this when I see him. I'm given 6 minutes then he's on to the next. Actually though, the Trileptal is nice and helping, not my ear though. Half the stuff I've tried to writeI've lossed twice soI better give up for now I'm still a one fingered typer. That stroke thing from my accident cramps up my left side when Trileptal induced. Cramps up my hand but relaxes my hip and leg. Lovely walk. Guy at the Dr's office thought I was in there for my limp so that was a fun side track. I hope you're well and I'm wondering how we all function or if the days just keep rolling by anyway... Andy

[baywatcher]

Try to make the doctors understand this. I first felt the twinges that became tn in my ear. I had ear pain for years. And now, even with the lightning bolts fairly well controlled, I have lots and lots of ear pain. And it isn't just me and it isn't just you, if we could get at the archives you would see that others have had the same problem. Yes, the tinnitus goes with it. It isn't sinus, it isn't a cold or congestion, the tn is affecting your ear. Ear, cheek, teeth, lots of constant aching feelings, many of them the ones that are listed in the literature as "atypical" tn. Who the heck makes up this stuff anyhow? Who's to say what's typical, or atypical, when the patients report this gradient of pain, this development from one set of symptoms to another? I am absolutely typical, textbook, saggy brain saggy vein tn - except that after all this time I have exactly what the literature calls atypical. I have both at once. I have things that they never even mention, like the burning fire that runs up to the top of my head and - at the same time - triggers exactly the same burning in my throat. We have the symptoms, Andy, tell your doctor to stuff the book into his drawer and listen to his patient. Sigh. Nancy

[EE03]

Jgreene, that is wonderful! I'm so happy for you!:D :D :D

To Pat - I'm on Lyrica again (150 most of the time but I've been known to bump up the nightly dose by 25-50mg if I start to feel pain) and I'm also taking Lexapro (20mg). My pain is ok but anxiety is eating me alive - making it hard to concentrate and think straight. Some tests are in my future to figure out whats going on. I think chemical imbalance, but I'm not a doc! I never had anxiety before I started treating with drugs.

Anyone else ever experience this! If so, i'm all ears....Ellena

[baywatcher]

Ellena, I have never felt that any anxiety was associated with the drugs. I'm not even sure that I would characterize what I feel sometimes as anxiety - it's more like a fear that suddenly none of the pills will work and that all-consuming pain will be back big time. Maybe that was more true early on, before I really understood that this is the way life is and will be. And this isn't any kind of high level thing that interferes with life, more like a lurking undercurrent that is ready to erupt. I wonder if you aren't right about it being more of a personal physiological thing - too little thought is given to the fact that we aren't all cookie cutouts with exactly the same chemical/genetic makeup. It's good if you have a doctor who's willing to work with you on this because coping with tn is enough without adding the burden of emotional distress caused by the meds. This is where I miss archives, there's no way to search to see if anyone else has posted on this in the past. Hope you find an answer though. Nancy

[EE03]

Nancy,

Thank you for sharing! Niki posted on the other board as well, and I don't want to rant on about this, but the knee-jerk reaction to TN pain and that type of anxiety and acceptance I can relate to. This sort of anxiety, which presented itself before ~2 months after beginning drug treatment, has gotten significantly worse lately. I am still betting on some sort of imbalance as you also suggest, and I note in my post on the other board that my docs are aware of my hypersensitivity to drugs, so time will tell. I hesitate to change anything since there are things to be done to measure this, and I don't want the mix to change and effect the results. Niki also shared her experience which at least lends some credibility to what I'm researching, finding, and personally experiencing. That's a big help to me! No, thats an understatement, its an enormous help!

I'm so glad this forums back! Otherwise, I'd have no one to relate to me!!
Big Hugs everybody...