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rob
04-24-2011, 05:29 AM
Hi everyone,

Friday night I had the worst flare up of Trigeminal Neuralgia that I have ever experienced. After about two hours of blinding pain in my head, I drove myself to the ER. The flare lasted for over four hours before I finally got some pain reliever that was effective. The pain was enough that I got sick to my stomach, and then passed out at the ER. My dad came and took me home, as I couldn't drive. I spent all day yesterday and last night at my parents house. The pain meds they gave me work, but make me sick to my stomach. Needless to say, it's been a rough weekend.

I'm home right now feeding my cats, but later I'm going back over to my parents house, and I'll be spending the night there again. All of this means that my choices for treating the TGN are narrowing, and I will be speaking to my neurologist tomorrow about my options which only include surgery at this point. There is a procedure called Gamma Knife that's minimally invasive, and that's probably what I'll go with. I have no idea the when and how at this point, only that I'm seeing my neuro tomorrow to discuss options.

Anyway, I'm hanging in there, I have plenty of supportive people around me, and I have a gameplan, so all is well for now. I'll be checking in here when I can. I hope you all have a great Easter! (or at least a better one than me!)

Rob

steve.b
04-24-2011, 05:42 AM
please let us know the details when you work out what is happenning.
thinking of you over this hard time

you have probably read all you need but this was interesting to me
http://www.jonathanborden-md.com/gamma%20knife%20mass%20dental.html

Bonita
04-24-2011, 06:06 AM
I am very sorry for the pain and misery you are going through and i am glad that you have such a supportive family. You will be on my prayer list. Get well Love Bonita

tgal
04-24-2011, 08:27 AM
OMG Rob I am so sorry! I can't even imagine having TN pain that long. My thoughts are with you. Please keep us posted when you can.

wolfwhisper
04-24-2011, 09:21 AM
Sorry your weekend hasn't gone well for you. Take a rest, and I hope you'll feel a little better. Happy Easter

Nonna
04-24-2011, 05:37 PM
Good thoughts and prayers headed your way. Please keep us updated, we care.

Nonna

red246
04-24-2011, 07:53 PM
Sending prayers & lots of (((hugs)))!

BonusMom
04-24-2011, 08:12 PM
Sorry to hear that you're not feeling well, Rob, but glad to know you've got a gameplan and some relief, albeit temporary.

Take care and keep us updated on how things go once you see the neuro.

rob
04-25-2011, 04:14 AM
Well, it's 7am, and I made it through another night. I'm still sick to my stomach, and I've been having these night-sweats and what can best be called "night terrors". I wake up terrified of something, I don't know what. It's an awful sensation, and the fear is very real feeling. I don't understand this at all. It's like a nightmare that doesn't stop when I wake up. It goes away after maybe 15 minutes.

I had another TGN flare start to come on last night, but I took the pain med and it stopped it before the flare took hold. So, there's one victory amongst all of the madness! I'm waiting for the neuro's office to open, so I can get the ball rolling on my next step in treatment, whatever that may be.

Thank you guys, for all you do. Seeing all these familiar names and faces, these people I consider to be some of the best friends I have, wishing me well, has really helped me cope. You guys have helped me keep the fear under control. There isn't much that scares me anymore, but I have been honestly very scared the past few days and nights. Thats not a normal state of mind for me.

Rob

Nonna
04-25-2011, 04:34 AM
Galaxy Quest

Never Surrender
Never Give UP

My son had night terrors. Good thoughts and hugs, I know all about them.

Toni

rob
04-25-2011, 04:39 AM
Galaxy Quest

Never Surrender
Never Give UP

My son had night terrors. Good thoughts and hugs, I know all about them.

Toni

Oh, thank you Toni. Hey, what causes these night terrors, and how do you stop them? Any ideas would be greatly appreciated.

tgal
04-25-2011, 06:05 AM
Good morning Rob. Sometimes the biggest victory we have is simply that we survived another minute. I hope your minutes begin to string together and you end up with a better day.

Thinking of you and keeping my fingers crossed

debbie-b
04-25-2011, 06:33 AM
Hi Rob,

I am sorry, that you have endure this much pain.
Hopefully the next step will be to get rid of this pain forever.
Thinking of you.

Debbie

bunny28
04-25-2011, 08:21 AM
I am sorry you are going though so much pain and then night terrors are disrupting your sleep on top of that. Please take care and know that others are thinking of you.

GoodDog
04-25-2011, 12:37 PM
Oh Rob! I'm so sorry you're having to go through this. You're in my thoughts and prayers.

magistramarla
04-25-2011, 03:35 PM
Hi Rob,
I'm sorry that you're in such pain.
I'm guessing that this means that it is time to take the next step and have that surgery. Hopefully, the night terrors will go away after the surgery.
Keep us posted about what the neuro said.
Meanwhile, we'll all think good thoughts for you.
Love and Hugs,
Marla

Nonna
04-25-2011, 04:30 PM
Oh, thank you Toni. Hey, what causes these night terrors, and how do you stop them? Any ideas would be greatly appreciated.

All I can say is try not to get overtired. try to de-stress and above all calmness. This is the first time, I've ever seen an adult with them so I can't tell you that hopefully you'll out grow them. get plenty of rest and above all do not overdo.

hugs,
Toni

Linda From Australia
04-25-2011, 04:47 PM
Gee Rob, sounds like you are in such a mess at the moment. All I can say is I remember when you had a couple of months that you were relatively flare free. When you are in the darkness of the pain try to remember, even if it is just for a scond, the great time you had when you were free of all these hinderences to your life. And try to remind yourself that the pain and terrors are only for a short period of time.

mdawncooper
04-25-2011, 04:59 PM
So sorry to hear of your pain. I am praying rest and recovery for you.

Melanie

kim,l
04-25-2011, 07:27 PM
dear rob i am sorry you are feling so unwell at the moment hope your pain eases very soon many hugs my friend luv kim l

Colleenc
04-25-2011, 07:47 PM
Thinking of you!!!

Hugs!!!
Colleen

rob
04-26-2011, 12:17 AM
Gee Rob, sounds like you are in such a mess at the moment. All I can say is I remember when you had a couple of months that you were relatively flare free. When you are in the darkness of the pain try to remember, even if it is just for a scond, the great time you had when you were free of all these hinderences to your life. And try to remind yourself that the pain and terrors are only for a short period of time.

Hi Linda,

Yes, I was just thinking about that wonderful 2 month period I had with basically no flares of any sort. And I am most certainly a mess at the moment. In military terms, I'm AFU-that's an acronym for All Frakked Up. Tonight I've been doing the whole "why me" thing. Of course, it's a useless exercise. The weird thing right now, is the fear. I'm not a fearful person by nature, so it's just very different for me to be like this. I'm afraid of sleeping and the horrible dreams, and afraid of the future treatments I will be considering.

But, for now, the pain meds are indeed working, so my base problem is under control for the time being. Thanks again for all the kind words and the advice everyone, it really does help.

Rob

Linda From Australia
04-26-2011, 01:26 AM
I have no idea how you are feeling, especially the fear you are experiencing. The only way I can even come any where near you are is to remember how I felt when my daughter was younger. Being autistic, I could not talk any sense into her. I just had to go on auto pilot and just do things for her automatically.

Everyday for many years I lived a nightmare, just trying to get my daughter to do the basic of things. One particular time when she was about 10 years old she was throwing a full blown tantrum, screaming non-stop for 15 minutes, without taking any deep breaths. (I have no idea how she did it) The reason why …. she wanted to have a bath and not a shower. But I was going out to a meeting and she needed to be washed before I went out. My friend came to pick me up, and she saw just about everything. As I was trying to dry her off and dress her in the living room, she was biting, kicking, hitting, punching, scratching - you name it she did it to me. I finally got her dressed and raced outside to get into my friend's car to go to the meeting. She asked me how I was feeling, and I told her everything was OK, life wasn’t really that bad. She stopped the car and was very cross with me and told me "Linda – your life is really bad!!!!

What I am trying to say is, in a round about way, when you are having a really bad time, instead of recognising the hell you are going through, just go on auto pilot and carry on with life like a robot. You will get through it and then when you have time to reflect after the nightmare, you will have the chance to wake up to yourself and freak out a bit. Then you can make some plans. But while you are going though a frightening experience, switch off for a while. If anyone shakes you and thinks you are withdrawing from life, just say that you are going on auto pilot until the nightmare passes.

I must admit that things are a bit better now that my daughter is 23, however, she still throws tantrums, but they are different. I still operate on autopilot at times when she is out in the public …. but that is another story at another time. Too much of a nightmare at the moment to talk about it.

Peridot20_Gem
04-26-2011, 03:18 PM
Rob,

I am sorry mate to hear what your going through and hopefully they can sort that nerve out to stop you suffering and passing out is'nt good for one thing, so stopping close to your parent's is another good thing, at least you know they're at hand in any situation such as this.

All my thoughts are with you mate xxx

SandyR
04-27-2011, 07:30 AM
Rob,

I'm so sorry to see the pain is back. I know you must be mad about that too. I know I would be. I'm so glad you have such a good support system around you right now and that you aren't staying at the house alone. Did you move the cats in with mom and dad for a bit too? I'm guessing you are going to move forward with the gamma knive surgery. Please let us know what day that will be so we can pray extra hard for you that day. You're in my thoughts and prayers.

Sandy

lacey50
04-27-2011, 11:14 AM
Lots of hugs and prayers are being sent your way. Check out our kitties!!!

rob
04-27-2011, 12:18 PM
Well, I have an appointment with my neurologist in ten days. I saw my GP today to ask for a prescription of pain meds to get me through till then, and to discuss what he unofficially thinks my next course of treatment should be. He thinks that the Gamma Knife procedure is my best option. It's minimally invasive, and has a fairly high success rate for treating TGN. Since I've exhausted my options medication wise, I would imagine that the neuro is also going to recommend the procedure.

The good news is that I didn't have any pain last night, and I actually slept fairly well. Lots of strange dreams but no night terrors. I think much of the fear I've felt has been the fear of having another flare, and having to endure that level of pain once again. And, the problem causing all of this is located in such a critical area at the base of the brain, that it just gets to me that there is this damn thing in my head that needs to be either irradiated, or physically severed in order for me to get better.

Whatever happens, I just want it over and done with ASAP. I have lots of plans and activities coming up this summer, and I'm anxious to get going with them.

Rob

tgal
04-27-2011, 12:47 PM
Rob,

I have tried to post in this thread more times then I can count but I always erase the post and log out. As you know I have TGN pain as well and there are no words to say how sorry I am for what you are going through. The pain that I feel in 2 min increments can drop me to the floor screaming and cause fear for weeks about it coming back. Four hours? What can I say to that? No words can make it better or even make it where I can understand. Four Hours? If I believed in hell it would be what you are going through now.

I too think that the Gamma Knife is the best course of action if you want my 2 cents worth. I know it is scary and I am glad that you have such a strong support system around you. Never forget that I am here if you need to vent. We all love you and are keeping you in our thoughts

Peridot20_Gem
04-27-2011, 03:49 PM
Rob,

I don't blame you wanting it sorted ASAP because once that's done, that's one less problem to contend with that's how i look at things and it's not pleasent going about waiting for a pain to happen plus if you want to enjoy your summer that's the last thing you want.

Thinking of you mate and i hope your ok xxx

Nonna
04-27-2011, 05:17 PM
My thoughts and prayers are with you what ever you decide to do. Remember that Fear is the greatest enemy we have.

kim,l
04-27-2011, 05:44 PM
dear rob sorry to hear you are still going through so much pain i am sorry you are so suffering so much fear just know my thoughts are with you many hugs kim l

magistramarla
04-27-2011, 08:43 PM
Hi Rob,
I sure hope that the neuro agrees with your GP and gets you set up for the surgery ASAP. Will that end the problem completely once it's done?
It seems that it would be well worth it to be out of that awful pain.
We'll all be thinking of you until this is all over.
Take good care of yourself, my friend.
Hugs,
Marla

BonusMom
04-27-2011, 10:17 PM
I have suffered from some horrific migraines, but I'm sure those pale in comparison to the pain that you suffer from with the TGN.

I am sure that the appt with the neuro will give you some mental relief-knowing for sure what the next step will be and getting it scheduled, performed and your recovery started.

We all wish you the very best and hope for good sleeps and terror free dreams.

rob
04-28-2011, 07:02 AM
Hi Rob,
I sure hope that the neuro agrees with your GP and gets you set up for the surgery ASAP. Will that end the problem completely once it's done?
It seems that it would be well worth it to be out of that awful pain.
We'll all be thinking of you until this is all over.
Take good care of yourself, my friend.
Hugs,
Marla

Hi Marla, and everyone,

I'm feeling pretty good this AM. I slept, had no pain, and no strange dreams or terrors. I feel like myself again, and I've "got my wits about me" again. So I'm looking at the overall situation with a more reasonable and calm eye.

The Gamma Knife Radiosurgery has some excellent success statistics for treating TGN. One study says 95% of people report immediate pain reduction, and usually total pain relief within one week to four months. 70% of the people in this same study reported being pain free 3 years after the procedure. The numbers drop a little if you have MS, but not enough to concern me.

The risks involved are minimal, especially when compared to the other treatment called microvascular decompression, which involves them actually opeing up your head and digging around your brainstem. There is a bit of discomfort because they bolt this frame to your noggin, but they give you a local and a sedative, so it's no biggie. Compared to the pain of a TGN flare, it's nothing. They generally keep you overnight, and the usual side effects are a bit of nausea and weakness from the radiation, and soreness where the frame/halo thing was attached. The machine itself is really kind of cool, looks like something from a sci-fi movie.

I hope I can get it all done ASAP so I can get on with my latest projects. Until then my auto racing plans are on hold as it's quite possible that the vibration, noise level, and G's involved could easily trigger another flare.

So, I wait patiently (most of the time),

Rob

Saysusie
04-29-2011, 12:28 AM
Hi Rob;
I am so happy to hear that you have had some pain-free days and nights without terror. I am curious, what circumstances determine if you should be a candidate for Gamme Knife Surgery or Microvascular Decompression? If the latter has a higher risk, then when would it be considered as an option for your condition? Would it be the next step if the Gamma Knife Surgery did not produce the desired outcome?
I was relieved to see your statistics on the success rate of the Gamma Knife Surgery and I hope that you are able to schedule it soon. I know that surgery was not your first choice, but if there is a great chance that it can eventually give you years and years of relief, then I do hope that you are able to schedule it very soon.
I am sorry that your racing is on hold for now, but what you said makes sense and I am sure that you do not want to aggravate or instigate another flare up.
I am praying that you continue to have pain-free days and reprieve from the night terrors (Oh how I hate those..why do we have them so often??)
{{{hugs}}}

Peace and Blessings
Namaste
Saysusie

steve.b
04-29-2011, 12:42 AM
a good mornings sleep............. great news.
hope they can schedule the op soon.

Nonna
04-29-2011, 02:42 AM
Thinking about you. Prayersand hugs sent your way,

rob
04-29-2011, 06:42 AM
You know, it's funny how sometimes bad things can end up having a good after effect. I'm awake, it's 9am, I'm well rested, and there is no TGN flare activity or pain. Outside, there isn't a cloud in the sky and it's a perfect 70 degrees. I walked out to get the paper, and I noticed that the grass seems greener, the ocean is more blue, and the morning light has never been more inviting. Karen's smile is more infectious than ever, and the sparkle in her eye is that much more brilliant.

Enduring pain that is right on the ragged edge of being unendurable makes the simple beauties of life stand up and compel us to appreciate them.

Rob

Peridot20_Gem
04-29-2011, 06:47 AM
Rob,

That was beautifully said mate and i am happy for you that the day seems better for you in more ways than one.

Thinking of you dearly Rob x

rob
04-29-2011, 07:16 AM
Hi Rob;
I am so happy to hear that you have had some pain-free days and nights without terror. I am curious, what circumstances determine if you should be a candidate for Gamme Knife Surgery or Microvascular Decompression? If the latter has a higher risk, then when would it be considered as an option for your condition? Would it be the next step if the Gamma Knife Surgery did not produce the desired outcome?
I was relieved to see your statistics on the success rate of the Gamma Knife Surgery and I hope that you are able to schedule it soon. I know that surgery was not your first choice, but if there is a great chance that it can eventually give you years and years of relief, then I do hope that you are able to schedule it very soon.
I am sorry that your racing is on hold for now, but what you said makes sense and I am sure that you do not want to aggravate or instigate another flare up.
I am praying that you continue to have pain-free days and reprieve from the night terrors (Oh how I hate those..why do we have them so often??)
{{{hugs}}}

Peace and Blessings
Namaste
Saysusie

You can have Gamma Knife done more than once. Although most people only need one treatment, some do have recurring symptoms and end up getting it done a second or even a third time. If you have it done more than once, you have to wait for four months between treatments. If multiple Gamma treatments have failed, they then consider you a candidate for the more invasive neurosurgery. From what I've read, it seems they will always try the Gamma first.

Rob

Bonita
04-29-2011, 08:59 AM
So glad to hear you are better. And you are right when you say everything looks better when pain is gone. Take care Bonita

steve.b
04-29-2011, 09:18 PM
Karen's smile is more infectious than ever, and the sparkle in her eye is that much more brilliant.

enjoy the smile........................and everything else.