LostSapphire: sending out love, dust, prayers and support to you!!!

[risingsun]

I'm sure you have made the neurologist aware of the urgency of your situation. I can only hope that you are seen ASAP! I can only imagine how frustrating this has been for you

 

[diamondseeker2006]

I''m thankful you are trying to get into see a respected neurologist. Praying for an appointment SOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[LostSapphire]

Thank you ladies. I''m pulling in every possible ''connection'' I''ve got through my work (we have a few neurologists who act as medical professionals for our firm). So the boss is calling in favours, and I expect on Monday there will be a voicemail with an appoinment on it.

hope hope hope.

Better yet, would be to find out the neurosurgeon has a cancellation for his last clinic this month....

I''ll take either one, or BOTH would be fab.

LS

 

[Linda W]

LS, I hope you don''t mind me asking you this question. Do you ever get the sensation that there is a ton of bricks just sitting on top of your head????????????? I mean, like a crushing pain sitting on top of your head???

 

[LostSapphire]

Date: 12/14/2008 3:10:39 PM
Author: Linda W
LS, I hope you don't mind me asking you this question. Do you ever get the sensation that there is a ton of bricks just sitting on top of your head????????????? I mean, like a crushing pain sitting on top of your head???

Of course I don't mind Linda!.

And as to your question, nope none of that. What you describe sounds horrendous though. I'm so sorry if that's what you've got...

The pain feels like my jaw is in a vise that is tightened as far as it can go. The left palate burns like it's on fire. All of my jaw around my teeth burns and aches at the same time. It feels like the best thing to do would be to grab a pliers and yank all of the upper left teeth out. As far as the outside of my face is concerned, I am numb from my middle upper lip, in about a 2" path that goes up to my jaw. pic below. mine affects the middle branch of the trigeminal nerve, which has 3 branches.

Apparently mine is an atypical trigeminal neuralgia (dammit why can't I just be typical for once??), I don't get the sharp pointy pains, or have the hypersensitivity to wind/touch like some people do. It's just screaming all the time.

I gotta get myself an icon for "the MONSTER".

So in the pic below, it's #2.

LS

 

[Skippy123]

GIANT hugs and I would make fudge for you if we lived closer, huge hugs and prayers outgoing!

 

[LostSapphire]

FUDGE is a *distraction*....I''ll try anything!

Thank you Skippy.

LS

 

[LostSapphire]

just for this moment…

I see that all experiences in
my life are moments of learning.
I give thanks to the Creator for my
life, for it has brought many rewards of
joy and happiness. I sing songs of praise,
and I am blessed in every phase of my
life now. My consciousness is lifted to
a state of gratitude, and I respect
every living thing. I fill this
moment with joy.
I am grateful.

 

[mia1181]

Hoping for news of an appointment on Monday!

 

[marcy]

Lost Sapphire, thanks for posting the illustration about where your pain is. It sounds and looks so awful! I sure hope you have great news tomorrow evening about having an appointment.

 

[diamondseeker2006]

big {{{{HUGS}}}}

 

[VRBeauty]

Thinking of you, LS, and waiting for news of an appointment!

 

[beaujolais]

neurontin (asap)

rf (radiofrequency) ablation

 

[MonkeyPie]

I took the time to read all 8 pages today. And LS I am SO incredibly sorry that you are going through this. You''re being a lot nicer and more patient than I could ever be - I''d have ripped into the doctors already for waiting around. I know they are busy but jeez.

I really hope they get something going for you ASAP.

 

[LostSapphire]

Date: 12/15/2008 12:25:00 PM
Author: sonomacounty

neurontin (asap)

rf (radiofrequency) ablation

sonoma:
If I could get some d*mn doctor to prescribe a transitioning process between the Tegratol and Neurontin, I''d be on it in a flash.

LS

 

[diamondseeker2006]

Date: 12/15/2008 4:45:22 PM
Author: LostSapphire

Date: 12/15/2008 12:25:00 PM
Author: sonomacounty

neurontin (asap)

rf (radiofrequency) ablation

sonoma:
If I could get some d*mn doctor to prescribe a transitioning process between the Tegratol and Neurontin, I''d be on it in a flash.

LS

This is maddening. A doctor on PS easily sees what you need and you can''t get a local dr. to give it to you!!!!!!! We all need to go and stage a protest at the doctor''s office for you!!!!!

 

[beaujolais]

I hope I'm not being a pain, LS. I work in diagnostic medicine so thought I'd put on my thinking cap for you. First, I'm hoping you are not too bad right now. Second, it annoys me that you've had to go on like this. I'm so sorry.

So, transitioning means you'd need a pain killer to help you get through coming off off Tegretol and onto Neurontin. I thought of Ultram but searched and that can react with Tegretol. Which, do you know of, that would be o.k.? I tell you, sometimes have to do your own research, need to grab these people by the ears and be firm and tell them, "this is what we are doing." (Yes, then, of course listen to their reasons for possible valid "why nots.")

B-6 is often taken by people with nerve pain. I know that is not the magnitude of relief you need (at all) but it could help. (Google search B6 and nerve pain/problems). If it won't hurt, you might consider adding that in.

Oh, I just saw that you live in Canada.

 

[LostSapphire]

Date: 12/15/2008 8:36:16 PM
Author: sonomacounty
I hope I''m not being a pain, LS. I work in diagnostic medicine so thought I''d put on my thinking cap for you. First, I''m hoping you are not too bad right now. Second, it annoys me that you''ve had to go on like this. I''m so sorry.

So, transitioning means you''d need a pain killer to help you get through coming off off Tegretol and onto Neurontin. I thought of Ultram but searched and that can react with Tegretol. Which, do you know of, that would be o.k.? I tell you, sometimes have to do your own research, need to grab these people by the ears and be firm and tell them, ''this is what we are doing.'' (Yes, then, of course listen to their reasons for possible valid ''why nots.'')

B-6 is often taken by people with nerve pain. I know that is not the magnitude of relief you need (at all) but it could help. (Google search B6 and nerve pain/problems). If it won''t hurt, you might consider adding that in.

You are NOT being a pain! You seem to be the only one out there in the medical field who at least will try and help.

The way I understand it, I can''t just stop Tegratol and start something else. My family doctor (who of course indicates she''s totally uncomfortable with prescribing for TN) said I need a Neurologist to help me do that.

B6? Sure, why not. I''ll google it right away. Thank you
LS

 

[LostSapphire]

Lousy day all around.
I didn''t get into the last neurosurgery clinic before XMAS. There were no cancellations.

I also didn''t get called back YET from the neurologist to whom I was referred to last THURSDAY.

This hurts so bad I want to scream.

Yet a month ago it seemed the worst it could ever get. I''d give my right arm to have the pain from a month ago instead of what I''ve got today.

The more I read about this type of nerve pain the less optimistic I am feeling about this whole thing. So much for a normal life: it''s either pain or drugs. Nice choice.

Sorry folks, I''m trying to be optimistic and grateful today but that''s not happening. Going to bed. Night night.
LS

 

[Kelli]

I''m just so sorry for you. And MAD! I keep checking in, hoping to see some good news. I wish there was something I could do to help.

 

[beaujolais]

Some links:

http://www.endthepain.org/support/documents/2004feb.pdf

http://www.scienceblog.com/community/older/2003/B/2003838.html

I did a search on trigeminal and B6. Found some positive things and many things that talk about the problems from excessive B6. I had taken it for awhile for chronic tennis elbow and I believe it helped. I have many co-workers that take B6 for some nerve related problem or other. I believe they are starting to use/look at it in migraine patients, also.

Tapering on and off Tegretol - I understand that. Most of the "bigger" meds you do that with and it is necessary. Many "regular" Doctors don't feel that comfortable prescribing Neurontin and that is a problem you've probably run into. I think the neurologists should feel comfortable with it, though.

I don't necessarily love all of what the PDR (classic drug reference book) has to say about it but In Real Life, people/patients say it works like nothing else. I have a pharmacist friend who I spoke to about it (I have some chronic pain issues, also) who feels quite comfortable it. I've not taken it myself but was looking into it at one time. I know someone who has trigeminal who has only found relief with neurontin. Some people speak of fogginess when you first start but say that wears off, tapering up gradually will help keep that away.

Sometimes it's o.k. to be Strong (but still polite)with your Doctors (makes them get on the ball a bit). Tell them about (the lack of) quality of life due to the pain and how profoundly it's affected you.

I'll keep my thinking cap on for you. Please update and hang in there. Soft hugs, Sonoma

Oh, and I'd call the clinic & neurologist Every Day to see if they have a cancellation. Every day. Maybe ask to speak to their manager. Tell them you're not making it and they need to get you in.

 

[pjean]

Oh, no, LS! I''m so sorry to hear about the clinic. I guess now we''re sending out dust for the neurologist''s appointment? DUST!! Also, dust that the Monster takes a Christmas break.

Darn Monster! Leave our LS alone. GRRRR.

Um... funny blog for when you run out of PS distractions? Woulda Coulda Shoulda You know, since gecko has puppies and kitties covered.

 

[LostSapphire]

OK we got something done today.

My boss (the big Kahuna Lawyer Owner of the firm) called up the Neurologist. Who happens to be on of his friends, and how we got an inside track in the first place.

Turns out the Doc had been in hospital and just got out today.

So, I saw him this afternoon. Got the gold star treatment with him and his student docs. 3 hour assessment (although my medical history is a bit complicated with the previous brain tumor so that makes it interesting I guess).

I GOT NEW MEDS!!!

He took a full history, and is forwarding it to the neurosurgeon. Saves the neurosurg from having to do it. And then, they're both on the same page.

Oh, and did I say,

I GOT NEW MEDS!!!

I have to transition off the old stuff and onto the new. Takes about 2 weeks, but he feels I should be getting some relief within a week (just the kind of Christmas present I want).

That should tide me over until I see the neurosurg. Until the MRI is checked again and the neurosurg determines the location of the lesion/neuroma/pinched nerve *whatever* we stay on this protocol.

And I am in the hands of a highly respected neurologist in this area.

Oh, and did I say,


I GOT NEW MEDS!!!

In case any of you are wondering, the new meds don't put me into the Land of the Faieries. But I am so happy to think that maybe there will be a bit of relief coming from the pain in the meantime.

Grateful for small mercies.

LS

 

[LostSapphire]

Sonoma:

Thank you for taking the time to provide research, suggestions and support. I appreciate your doing that.

Just to fill you in, I''m at 800mg tegratol/day. We''re switching over to 2 x 75mg Lyrica. The 1st week will be scaled back amounts of tegratol, and 1 x 75mg Lyrica. 2nd week, less tegratol, and 2 x 75mg Lyrica.

I asked him about the Neurotin and he said he finds the Lyrica more effective with a few less side effects. We''ll try that first.

Learned an important thing: if a patient stops any of the anti-seizure meds cold turkey, they then are at risk to seizure themselves....hmmm, wonder if my family doctor was aware of that when she was prescribing short doses of tegratol???

And B6, he said leave it alone until we''ve transitioned over and I''ve been on the Lyric for a month. Too many things going on, and he needs to be able to see if it''s working first or not. But he did say, too much B6 can be problematic as well, so we''ll see in a month or so.

Anyhow, I just thought you might be interested in the medical detail.
thanks again

LS

 

[Elmorton]

LS, YAY for new meds!!! I hope this is just one piece of happy news with lots more to follow when you see your neurosurg.

 

[diamondseeker2006]

Thank God, LS!!! Give your boss a hug for us!!!! I am SO happy that you got in to see that dr. and got some new meds AND info to the neurosurgeon!

 

[beaujolais]

Oh Thank Goodness ! !

I'm so very glad.

The plan sounds good, in fact. Lyrica is quite similar chemically and functionally to Neurontin. (I think someone told me they came out with Lyrica as Neurontin is now (or is going) generic and they won't be able to make as much money on it. Eeesh, figures. Anyway.)

I wasn't aware that they are liking Lyrica better. Great. Really great.

Again, so very glad.

More soft hugs, Sonoma

Will check back.

----

...hmmm, wonder if my family doctor was aware of that when she was prescribing short doses of tegratol??? ---

Not surprised. The mistakes that go on . . . Last time I was at the GP they suggested an additional medication for me (chronic pain patient here). I said, "You realize that reacts with the other one I'm taking." Reply, "Oh, right . . ."

 

[marcy]

Lost Sapphire, woo hoo and yippee - I am so excited to hear you got to see the doctor and are starting new meds.

Take care!

 

[VRBeauty]

LS: I',m so glad that you got in to see the guy and that you got new meds!

I know you'll be happy if they make even a little bit of a difference, but please rest assured that all of PS will be hoping, dusting, praying, and generally sending the strongest possible message that we want the new meds to make a huge difference!

ETA: Please make that a ***HUGE*** difference!

 

[risingsun]

New meds rock the house

I hope you will be feeling some relief soon!!