Thanks for all the replies!

I mentioned to my doctor about the trigeminal neuralgia possibility, to which she responded that she did not believe it was actually trigeminal neuralgia.

Sometimes these doctors just make me want to

Anyways, I slept AGAIN from 5 pm to 9 pm this evening.. now it's almost midnight, and I'm ready to go back to sleep again.

Possible I caught a touch of something, but I am going to wait until I can contact my doctor and discuss the drug before taking any more of it. I did feel absolutely dreadful.

I've tried:

Amitriptyline (lots of side effects)
Carbamazepine (changed my pitch perception of music in 2 day's worth, scared the crud out of me, discontinued this)
Neurontin/Gabapentin (the stuff made my head feel like it was going to explode)

Clonazepam is the only one thus far I have been able to tolerate.

So that's 2 "nos" on the anti convulsant front, and 1 no on the anti depressant front. Effexor may join the list as a 'no'.

My doctor wanted to try the extended release venlafaxine (37.5mg tablets), starting with 1 daily for 10 days, and then up to 2 daily.

In any event, I felt truly awful all day, and it began about 1 hour following taking my first pill.

I believe I am seeing my neurologist in November, but it may be worthwhile to call him and see what he has to say about this head burning. It's almost like my burning mouth I had for so long (which by the way, is nearly gone.... still some tender spots though) moved upwards into my head. I've had the head pain before, but it had gone away, now it's back and it does not seem like anything is breaking through it.

For all I know, my neuro may suggest another round of IVSM, or prednisone. The pain has gone away completely before, but the quitting smoking definitely triggered this current relentless pain I'm having.

Edit: Cherie, nope I didn't try that but maybe I'll go grab some tomorrow. Worth a shot!

Laura,
I'm sorry you're not feeling well from side effects from the Effexor. I've never been on that. I was on Zoloft for a short time though and had to stop it due to the nausea side effect I got. If it were me, I'd call my neuro. I think a lot of us with MS seem to be more sensitive to side effects than say, the general population. Feel better soon!!

Oh yeah, it's definitely neuro time. I feel cruddy!

I'll call and I'll get the secretary saying "You need a referral to see the doctor".

It's such a crap process here, honestly. I don't know if this is standard or not, but I have to have a referral to get into my neuro from my GP every time. Seems really silly.

Dimpled one, I'm sorry you're feeling cruddy and really happy you're going to try to get to see the neuro. What a mess.



Neurontin/gabapentin worked for burning stuff for me, but as for pain...well, it didn't touch it. So I tried Elavil (we've been through the Elavil thing already in another thread) and it made me feel strange so I ended up on a low dose of Pamelor. The Pamelor took the pain away in a day! It was AWESOME. Eventually stopped using the Pamelor but it was great. Plus, and I wasn't using enough for a therapeutic dose of it, it helped lift my mood a bit. After having felt so cruddy for so long, any lift in mood was good. That was 2003 however.

Hope you get this straightened out--and SOON!

P.S. Do you play Dark Age? I can't remember. Got a kid who works for Mythic (E.A.).

Dimpled one HAHA!

Pamelor, that's a new one to me. I should look into that possibility perhaps...

I feel like an odd ball sometimes.. I keep hearing about the cases of pain in the arms and legs, and it seems like those of us with it in the head, beyond headaches, are a rarer bunch.

Anyways... Yes I still play Dark Age of Camelot! I'm still the "Druid Team Lead" for the game. I actually was just in Chicago for their "road trip" they do. That was a lot of fun!!!!

Well........

He just got promoted to game tester so he gets to play all day and try to break the game and find bugs in it! Tough life. I'm so glad I let him exercise his thumbs and fingers after school.

LOL Gaztastic, did you ask him about playing Dark Age of Camelot?

Should try and get a free for life account!

Laura, You are not alone! I know when I first told my neuro about the burning/tingling pain on the top of my head he just shook his head like he had never heard of it before. I have had it off and on ever since my first flare. (Neurontin was working until about 6 weeks ago.) He then acted as if the burning in my arm was more "normal."

Well Barb, I think we should just reference one another when we go to our neurologists as 'case studies of real people suffering the same crummy as heck pain"

Mine's actually improving a lot today. I took some Aleve (which I purchased in the USA!) and much later 2 Tylenol 1's (with codeine, mind you a very small amount) and I have only taken .25mg of Clonazepam today. So that's a VERY good day overall on the drug to pain ratio for me.

I haven't touched that anti depressant again. Still waiting on Monday... however I am going to mention the one Gaz talked about, because having read about it, it makes so much more sense.

Then again, perhaps my doctor didn't prescribe this anti depressant because it's from the same family as Amitriptyline?

http://en.wikipedia.org/wiki/Nortriptyline

It makes SO much more sense as per the description of what it helps. When I read "TMJ disorder" I nearly slapped my head, dumbfounded. I have TMJ! Fact is, that was the FIRST thing I was diagnosed with throughout this whole cruddy mess.

Anyways... doctor SHOULD be available tomorrow to talk to at least. I just wonder if Nortriptyline would be a no no after my Elavil (La Evil) experience.