So to try and deal with my burning MS pain in my head/face...
 

My doctor has now prescribed me Venlafaxine (Effexor).

I'm a bit weary about this one, having read the description of it. My prescription is to be taken 1 37.5mg capsules for 10 days, then increasing to 2 capsules a day.

I took my first one last night, and went to bed around midnight. Woke up at 4am feeling really 'weird'. Kinda nauseous or 'off'. Finally fell back to sleep, woke up at 8 am and same deal, I feel kinda nauseous.

Of course the 'hope' behind this isn't the anti depressant portion, if the off label help with neuropathy.

So far, I'm not too impressed and I don't know if I should keep taking this crud. Doctor did keep me on Clonazepam however and was surprised to read that it has anti convulsant properties (ever feel like you know more than the doctor does?).

Anyone else tried Venlafaxine before? As I sit here typing this, I'm yawning and it's a mixture of poor sleep feeling and wanting to toss my cookies.

I went back to sleep and woke around 1pm. I decided then that I will go a week before thinking about touching this drug again. I tried to call my doctor today, and no luck, they're having a flu clinic and the phones are off!

I'll stick by my clonazepam for now.

Sorry you are dealing with this! I don't know anything about the medication, sorry. I hope this improves quickly for you though!

I did tell my GP that I had not heard of this medication either... and she knows that I know a bunch about medications doing my own research (I had to basically explain to hear why Clonazepam is helping the burning pain, due to it's anti convulsant properties.. and she was unaware of this!).

Ideally we both want to see me OFF the Clonazepam, but it may be the only drug that really and truly helps to calm down the burning.

Doctor also gave me heck for quitting smoking cold turkey. Said I should have gone to her first to get the patch or something to ease the process. It does now seem I have tossed my body into a semi relapse as far as the burning pain in my face is concerned.

Laura I sure hope something gives for you and this annoying issue, I know the clonazepam was only thing that worked for me for some time, dont ya just love having to talk to a doctor on a friday:Bang-Head:

hang in there:hug:

From what I understand effexor is often prescribed for neuropathic pain (particularly trigeminal pain which is what you are probably experiencing). It is an anitdepressant.

Clonazepam is more likely to be prescribed for spasticity. I have taken it a few times when my leg is really bothering me with spasticity.

My neuro mention effexor as a possibility when I first started taking neurontin if neurontin does not work. Side effects do not sound pleasant. I have heard that mj helps more with the burning than anything else.

Efexor experience
 

Hi Dmplaura,

I've been taking Venlafaxine [Efexor] for some 12 years without any ill effects. My current dosage is 300mg per day [half in the morning and half in the evening]. You may find that you tolerate slow release version [Efexor XL] better, than the older tablet form.

Efexor is a Serotonin and Nor-epinephrine reuptake inhibitor [ie it does not supply serotonin or epinephine, but rather enables a build up of these naturally produced substances in the brain]. Thus it is chemically unrelated to other types of antidepressants.

Let me know if you have any specific concerns and I will try to help if I can. :)

Take care.

Merle

Sorry to hear about all of your problems Laura, I don't know anything about the drug you are talking about but i do know about Clonazepam, my doc put me on it for anxiety but it just made me too tired so he switched me to zanex. This doc I like and he usually does me very good, it is my NEURO that ticks me off and sometimes I DO feel like I know more about SOME things than she does....

I take gabapentin for nerve pain, temzepam for sleep and zanex for anxiety. My neuro will only prescribe me the gabapentin, all else comes from my PCP..

I have so many issues all at once I am SICK of being SICK.......I am sure you know what I mean...

Keep your chin up and try and smile at LEAST once a day, sometimes it is all we can do :)

Joe

Sorry to hear you are still suffering with the facial pain, Laura. Did you happen to give Benadryl a try?

It sounds like quitting cold turkey was stressful for you, although from here you seemed to manage it exceptionally well. I'm a smoker, so I know it wouldn't have been easy . . . but CONGRATULATIONS for such a huge accomplishment!

Cherie

I am also taking the neurontin (gabaptin..or whatever it is generic lol)

for nerve pain...it kicks the tingling pain off me...I will feel my face feel that numby feeling...but not the tinglings....I have some side effects...and watching how much I am taking..due to that...but for the nerve pain...heaven....hugss,sarah

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 :Bang-Head:

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. :eek: 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.

:hug::hug:

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. :cool:

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........ :D

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! :D

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" ;) :hug:

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? :o

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.

Best to ask. Last thing I want to see is a smoke-free, crabby, sleepless, spotty mouth Dimpled One who's burning up. :eek::eek:

mouth pain
 

:smileypray:

Hi everyone,
This is my first time posting, I sure hope someone can help me. I have a burning, tingling, metal taste in my mouth and my tongue just feels weird, I want to loose my mind, I have been to several doctors and they never help, tried different drugs no luck, been to a taste and smell doctor nothing. I am thinking it is a neropathy, does this sound familiar to anyone. I need help before I loose it.

Thanks

I was on effexor a long time ago. Mine wasn't for pain though it was the so called bi-polar my GP decided I had. He combined the effexor, amitryp, zoloft and something else. None of which really worked to treat the post partum depression I was having. But it seemed like it made all of the other meds stronger, and brought out all of the bad side effects of all of them.

I basically had to eliminate a ton of possibilities before I came to the conclusion that mine's due to my MS (neuropathy) and nothing else. That included exclusion of allergens, dentistry, drug reactions...

what your's sounds like is burning mouth syndrome, but it could be Sjorgens (if I'm spelling that right) syndrome... there's a few different disorders causing burning/tingling or dry mouth.

Getting a doctor to understand it is a true test in beating your head against a proverbial wall and seeing how much you can take. Mine still doesn't 'get' it. She just finally agreed to prescribe me Clonazepam, after I tried a bunch of other stuff that didn't work (antidepressants, anticonvulsants).

Welcome to NeuroTalk! :) You'll find a lot of useful info and support here! :)

effexor
 

Hi I was very temporarily on effexor years ago and it made me severly depressed and weird feeling also within hours. My brother was taking it when he tried to commit suicide. I have it in my charts that I will never touch that horrible drug again. Hope you are o.k

metal tastein mouth
 

Hi, I had a flaire that produced a metal taste in my mouth 17 years ago almost now before I was diagnosed with sjorgrens...of course,the drs didn't take me seriously..however, I kept a diary of they symptoms and still have that diary.These past years I developed the burning mouth thing to extreme which, eventually, bounced me from dr to dr draining my financial resources until I ended up at Tufts University where I finally was tested properly. I take salagen twice a day and that has resolved much of the burning mouth unless I get real tired and stressed.I also had terrible fungal infections in my mouth and on my lips for months and was given a med that worked great for that. I was improved in just about two weeks from that flair. The metal taste really stood out,though.

Hi Laura

I am sorry that you are going through such a hard time at the moment.

I am taking Dothiapen (which is a tricyclic antidepressant) and also Topamax (which is an anti-epileptic) to help me handle burning legs/feet and reduce the number of falls that I was having.

So far, it is working pretty well, with my legs still burning but not near as much as they were before I started the meds, and no more falls in the last few months.

I think they both work, but on different systems - and together I seem to have much less problems.

Take care, and listen to your body, but don't forget that many meds take a while to become effective and to lose the initial side-effects - I know I had lots of tingling a quite a few sleepless nights until it all settled down.

I hope that it has the same benefits for you if you stick to it.