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rob
11-23-2010, 02:43 PM
Hi Everyone,

I just wanted to let people know that I will not be active here for a few days. After being dormant for a substantial time period, my problems with Trigeminal Neuralgia have returned. I am also having other CNS symptoms, mostly numbness in my right leg, and burning feet and hands.

The TGN pain is off the chart terrible. If it keeps up, I am going to be more than willing to pursue a more invasive form of treatment (I'm only taking meds for it right now), in order to get it under control.

I have plenty of support, and I'm not alone at all, so please don't worry. I'll be back to give an update as soon as I can have a period without pain, and better able to collect my thoughts. I am hopefully seeing my neurologist either tomorrow, or Thursday.

I hope all is well as can be with everyone, I'll talk to you all soon.

Rob

tgal
11-23-2010, 08:04 PM
My thoughts are with you and I hope you get to feeling better soon! The CNS issues are the worst for me so please know that I am glad to know you have wonderful people around to take care of you. Keep us posted when you can

teresaa40
11-23-2010, 08:45 PM
So sorry Rob, to hear you are going through so much pain again. You'll be in my prayers. Definitely keep us posted.

BonusMom
11-23-2010, 10:07 PM
So sorry that you're having increased CNS symptoms, Rob, but very happy that you have such a great support system to help you through the difficult times.

We'll all be thinking of you and count you amongst our "things" to be thankful for on Thursday..

Take care.

magistramarla
11-23-2010, 10:49 PM
Rob,
I'm sorry to hear that you're hurting, too. Take care of yourself, have a quiet holiday and get better soon.
We'll all be waiting to hear from you when you do.
Hugs,
Marla

Nonna
11-24-2010, 05:33 AM
Hugs, good thoughts and a load of prayers for you. So glad you are not alone. Stay quiet and rest.

Nonna

debbie-b
11-24-2010, 05:59 AM
Awww, Rob not again.
I am sorry that you have to go through this again.
I hope your pain goes away and stays away.
Luckely, you have loving people around you.
Let us know, how you are doing, as soon as you can.
My thoughts will be with you.

Debbie

SandyR
11-24-2010, 11:34 AM
You're in my thoughts and prayers Rob. I hope you feel better soon and it doesn't come down to surgery but if it does, I pray it goes well. Happy Thanksgiving. Hope you are able to enjoy some of the holiday tomorrow.

rob
11-24-2010, 12:43 PM
Thank you guys. It didn't even occur to me that Thursday is Thanksgiving. It's like I've been in my own little world these past few days. I have an appt. with the Neuro 9:30 am Friday. Been up since about 11:00am here, and have not had another TGN flare, but the pressure is there. It's like walking through a minefield. Brush my teeth the wrong way, turn my head too quickly, and boom. Could not have happened at a worse time. I don't want to bring others down, like family who have traveled far to come home for Thanksgiving. I've told others here many times about just getting through it, and not letting it get to you. I know it works, but's it's different to be on the other end of one's own advice! It works, but it's easier said than done.

I am taking things one hour at a time, and I have had no pain for almost three hours thirty minutes. This is good. Thanks, everyone, and I hope you all have a great Thanksgiving tomorrow.

Rob

tgal
11-24-2010, 02:31 PM
Don't worry Rob. We know it is always easier to be a teacher then a student (we do it every time we post)! We also understand hour by hour. I hope you continue to have good hours and that your family and friends understand and don't put any undo pressure on you. We will be waiting for you when you return. Good thoughts coming your way from Texas!

mountaindreamer
11-24-2010, 03:50 PM
hi rob,

oh, i am so sorry to hear of your troubles returning. sometimes there just aren't any words that will help you feel better, but please know that you are loved by all of us here at whl, and i know you will be in our hearts and thoughts tomorrow.

yes, you are right, when this stuff hits us, it is so hard to remember our words of advice, we just have to ride it out and rely on our resilience to get us through. So glad that you have lots of support there, we are here when you can return.

sending you wishes for peace.

rob
11-26-2010, 01:30 AM
Well,

I made it through to about 5:00pm yesterday, dinner and visiting was basically over, thankfully. Then I had another TGN flareup and it lasted for over three hours. It was bad, really effing bad. This is no way to live. I see the Neuro in 6 hours, and I am going to tell him that I don't care what has to be done to fix this, just fix it. I have one more type of med I can try as an option, then we get into more invasive treatments. It's about 3:30am right now, and I'm awake, and not in pain, but living in dread of the next flareup.

There is also a procedure that uses a targeted form of radiation to zap the nerve bundle that's causing the pain. It has about a 70% success rate, and is an outpatient procedure. After that, it's actual surgery. The trigeminal nerve is located kinda deep, under the brain, so we're talking major neurosurgery. If that's what it takes, then so be it. I'll stop in and let you all know what the Neuro tells me when I get back from my appointment.

Hope you all had a good Thanksgiving,

Rob

tiggerlishus - Heidi
11-26-2010, 04:05 AM
oh rob i am so sorry to hear the troubles you are gonig throu i really hope it all gets sorted soon much love and hugs xx

tgal
11-26-2010, 05:49 AM
So sorry for what you are going through! Thanks for the update and keep us posted as you can!

SandyR
11-26-2010, 07:36 AM
Right now you are probably sitting with that Neuro. I am praying they give you an answer for how to get this pain out of your life. (((gentle hugs)))

rob
11-26-2010, 04:23 PM
Hi guys,

The Neuro started me on a new med called Tegretol. Supposed to be an effective treatment that's well tolerated with few side effects. I also have to go have another MRI done to see if the blood vessel and the trigeminal nerve next to it has changed in size or proximity. If the new med does not work, I will have a treatment done known as a "Gamma Knife". Sounds kind of scary at first, but it's really not. It's a targeted beam of radiation that they aim directly at the affected nerve. They zap the nerve and it shuts down some of the nerve and thus the pain transmission. It's an outpatient procedure, nothing to it really. The overall success rate is 70-80 percent. Sounds good to me. The other options involve invasive neurosugery in the area at the base of the brain. I want to avoid that for obvious reasons. I'm feeling OK right now. Hopefully this will continue.

Rob

red246
11-26-2010, 04:45 PM
Rob,
Just now seeing this thread. So sorry to hear you've been having troubles! Praying that the new medicine works for you!

tgal
11-26-2010, 04:49 PM
I am so glad to hear it Rob! After I found out you were having trouble with this I looked it up and I read that Tegretol was one of the best meds for this. I also read about the Gamma Knife. I am with you and I think either of those are pretty good options. Not mentioning the third one because it will be corrected before that. Glad you are feeling better today. I am not sure if you know how important you are to all of us on here but I wanted to make sure and let you know. You are more than a moderator. You are our friend. Not only does the forum need you but we, as a group need you as well.

Take care of yourself and know that we will be here waiting for updates as you can give them

(FYI... after all this time I finally figured out that I can change my own thread title. LOL Sad that it took this long considering I use to do computer support!)

Linda From Australia
11-26-2010, 07:56 PM
Hopefully you will start feeling better soon Rob, and be able to get back to your hobbies

BonusMom
11-26-2010, 08:12 PM
I read about the Gamma Knife when they thought I had a meningioma and it didn't sound too bad--all things considered.

I'm just really sorry that you're having such a terrible time of it. Head pain is just miserable! I hope the new med prevents further attacks.

Please keep us posted on how you're doing.

rob
11-26-2010, 08:24 PM
I'm feeling pretty much beaten up and defeated tonight. It's like I'm walking around the house in slow motion surrounded by a fog, or haze. I guess the lack of sleep, and the stress from trying to hold back a wall of pain has gotten to me. I haven't felt this strung out since way back when I first got my SLE diagnosis. I should be thankful that right now I'm not feeling any pain, but I can't help but feel very apprehensive about dealing with the next flare up. It could happen five minutes from now, or five days from now. I don't do fear, and I can tolerate a fair amount of pain, but this thing is really testing me on both counts. But, I have support from here and at home, so I will get by, if only by the skin of my teeth. Thanks guys, for everything.

Rob

tgal
11-26-2010, 09:31 PM
I really am sorry Rob. Anticipating something you know is going to be really bad and you know is going to come back but you just don't know when would have to be the worst. I am crossing my fingers that the new medicine will start working quickly and until then just know that we are here for you.

magistramarla
11-26-2010, 09:49 PM
Hi Rob,
I've just now caught up on your updates. I hope that the new med works. Hopefully, you can rest tonight and it will kick in. Anticipating the pain probably just makes it worse.
Here's hoping that you have a decent night tonight and that we hear good news from you in the morning.
Love and gentle hugs,
Marla

SandyR
11-29-2010, 07:26 AM
Hi Rob,

Hope you're feeling better. I'm only just now getting back on here after the weekend. Are you still in the foglands?

Hunniebun
11-29-2010, 10:32 AM
Hope that things work out for you rob and things start to get better.

Nonna
11-29-2010, 11:28 AM
Hi Rob, hope today is going better for you.

Hugs and good thoughts
nonna

Bonita
11-29-2010, 05:22 PM
Dear Rob hopefully there will be no more flare ups and i hope your pain goes away to stay. I am glad that you have a good support system. Love and prayers Bonita

Saysusie
11-29-2010, 05:56 PM
Rob;
I am so sorry to hear that you are suffering so much as a result of what you've been through. It is totally understandable that you are filled with apprehension and stress due to fear of another pain-filled attack. To have endured such unbearable pain and to have no idea when it will occur again is a very frightening way to live. The trepidation, alone, is enough to cause fatigue and an inability to focus.
I pray that you do not have to deal with this again for a very, very long time. But, whatever occurs, please know that we are here for you and that we are holding you in our thoughts and prayers. Sending you hugs filled with understanding.

Peace and Blessings
Namaste
Saysusie

rob
12-05-2010, 09:31 AM
Update-

Hi everyone, I thought I should give you all an update on what's going on. Yesterday, I woke up to NO PAIN! Last night, I went to bed after my first full day of having no TGN pain and it felt really damn good.

Today, I've been up for a few hours now, and once again, no TGN pain. I believe the new med is actually working. However, I am fully prepared to do what has to be done if the TGN flares are not gone for good. I am also very aware that in the next minute, hour, or day, it can all come back, but I don't care about that at the moment. Right now, I have almost 1 1/2 days of no pain. I now own those days, and TGN can't have them back! To use one of my favorite Sci-Fi four letter words- Frak TGN!

I cannot thank you all enough for all the kind words and support. And I want you all to know that despite the fact that I am a non-religious person, I very much appreciate all of the prayers so many of you have said for me. I'll take all the help I can get!

So, I'm keeping my fingers and toes crossed that this terrible episode is now indeed behind me, but I will not allow myself to become so damn devastated and depressed again if it's not. I'll just move on to the next step in treatment.

You guys are truly awesome,

Rob

tgal
12-05-2010, 09:52 AM
I am so happy for you Rob! You are truly missed when you are away! I have had my fingers and toes crossed and thought of you daily. Thank you for the update and I am glad you are having some time to enjoy being pain free!

Nonna
12-05-2010, 12:01 PM
Rob
I'll ditto what Mari said

You are missed always and I'm so glad you are doing better.

I won't even castigate you for your use of the word FRAK!
I've actually gotten slapped across the face by my Mother for saying "s**t"

but all inall so glad you are feeling better
nonna

magistramarla
12-05-2010, 12:11 PM
Rob,
It's so good to see you back! I hope that you are back to your normal self very soon. We all missed you!
Don't you love those sci-fi euphemisms?
Hugs and more hugs,
Marla

BonusMom
12-05-2010, 11:14 PM
Excellent news, my friend. An early and well deserved Christmas gift. I hope that your days continue to be pain free.

SandyR
12-06-2010, 08:28 AM
woo hoo! (I don't want to scream and give you another headache)

tiggerlishus - Heidi
12-06-2010, 09:20 AM
I'll ditto what everyones been saying I'm so glad you are on the mend I hope it continues

Much love and look after your self rob xxx

rob
12-06-2010, 02:46 PM
Got up this morning, and felt great. We had a foot of snow last night, and I snowblowed the driveway. I still feel good! Gonna have to make sure Santa brings my Neurologist a bottle of Glenfiddich Single Malt.

Rob

Linda From Australia
12-06-2010, 03:47 PM
YAY no pain ...... perhaps you can play snow angles, or make some snow men. Better still, draw a target on a tree and write pain in the middle and throw heaps of snow balls right in the middle! Bulls eye!!

Well come to think of it, just enjoy your fire inside you house because if your do all the things I just said to your pain is sure to come back. What do I know - it never snow here in Western Australia. The only time I have seen snow is when I unzipped my bean bag when I was a kid just to see what was inside it and my Mum and Dad came home so I jumped on the bean bag so they couldn't see what I was doing. GOSH - now that was a snow storm, and at 40 C (104 F).

Enjoy your pain free days Rob, and the snow (what ever you do when it snows)

mountaindreamer
12-06-2010, 04:30 PM
hi rob,

hmmm, a good single malt, a foot of snow, a roaring fire.....sounds like a great way to spend an evening celebrating "no pain". oh, rob, i am so relieved to hear that your pain remains controlled. However, i am most impressed with your inner strength. You are truly a blessing to the many members of WHL, and you are so loved by so many people. I am honored to be your friend.

i know the fear of pain returning that you are feeling, but I do't think i have ever experienced the level of pain that you have endured. The effects of being in such pain can result in several days of foggy brains, weak bodies, and the overall feeling of being "wiped out". Every inch of your body was affected by that level of pain, and now you all just need a few days of rest.

i, too, my friend, will keep my fingers and toes crossed in hopes that your new medication is a 100% success.

teresaa40
12-07-2010, 02:21 AM
So glad you're feeling better. What a great Christmas surprise.